Liz Blows
“I Told You I Was ill” (thanks Spike)
The Personal Journal of a Stiff Person Syndrome sufferer who is still dancing inside, despite the disability
(DoB 24/3/52)
My Diary...
1980 to …? (when I’m ready and not a minute earlier...)
1980
In 1980, I married my husband David. I frequently revisit this opening line in My Story as the years pass and, to this day, I can still say it is a secure and happy marriage. So some things in life are good!
1983
I was diagnosed with IDDM (Type 1 diabetes). My first autoimmune disease! Three cheers for endless injections and a lifetime of strict dietary control (supposedly).
1989
We applied to adopt. We were feeling very brave, I suppose. Late 30 somethings and mucky nappies (if we get 'em young enough). Should be interesting…
1991
I began experiencing a strange tightness in my upper abdomen. I put it down to the stress of the almost weekly interrogation during the adoption process, not made any easier by David's determination to be (very) Bolshie in the face of what he considered was little short of the Spanish Inquisition.
He just couldn’t stand the incredible intrusion although he did understand it was (sort of) necessary, if only because of the rules and regulations surrounding adoption. But even dear old Torquemada can't have been that bad, could he?
1993
Despite Dave (joke!), we successfully adopted two children: Eloise (aged three) and Christopher (17 months). I gave up my job as a practice nurse to be a mother and kept woman by a poorly paid journalist. Our lives are disrupted forever, but utterly complete...except for the nagging, endless abdominal tightness that, at times, led to hyperventilating. I was also becoming increasingly anxious about things that were of no importance (nothing new there, said David).
I visited my doctor and underwent several tests, all of which came back negative. Curious and puzzling. I then began experiencing lower back pain. Another visit to my doctor and a referral to an orthopaedic consultant again revealed nothing. Curious, puzzling and a little disconcerting.
1993-1996
Time passed and more symptoms manifested themselves. My movements were becoming more and more limited; sounds, touch — anything unexpected kept making me jump like someone had plugged me into a high voltage socket. I also developed an irrational fear of crossing the road. Surely not a reaction to endless jokes about "why did the…?”
I also found I could not bend to cut my toenails, put on socks or fasten my shoes because of hyperlordosis (inward curvature of the lumbar spine). My neck, back and left leg kept stiffening up.
When Chris started school, I could walk across the playground to take him into his classroom, but it was getting more difficult to walk back alone. My back ached constantly and my feet did not seem to want to go where I was pointing them. What on earth was wrong?
I even began to find socialising difficult and started to run out of excuses as to why I couldn’t ‘make it’. It seemed so much worse and that much harder for people to understand because I had been an active member of our local theatre group, and as a member of Junior Chamber I had given talks about my hometown to JC members in Holland and France. I was the one who could ride, swim and dance the night away (though not usually all at the same time).
None of us could understand why my GP couldn't find anything wrong. Neither could the poor old doctor who was as stumped as a man who couldn't get any more stumped. The inevitable conclusion was that it was all in my head, and I was sent to see a psychologist. After three sessions, we all knew it was not going to achieve anything. I then began the rounds of alternative therapies like some poor down and out hunting for tab ends in the gutter — interminable and for little or no reward. In this case, we couldn't even find an empty fag packet. Bottom line: Nothing helped.
October 1997
During my latest trip to my still-stumped GP, he noticed there was a problem with my left leg. He suspected diabetic neuropathy and my always-on-the-ball and ever-wonderful diabetic consultant, Dr Chris Walton, arranged for me to see a neurologist the following week. After his initial examination, he told me I was presenting with a condition called Stiff Man Syndrome. But he also said it was unlikely because it was so rare and in all his years as a neurologist, he had never actually seen a case before. As David and I left his room that evening, somehow I knew, beyond doubt, that what he had suspected would be my diagnosis, my life sentence. I had never felt so frightened in my entire life.
When we got home, I tried very hard to get drunk (not the most sensible and rational thing for a diabetic to do) but, despite my best efforts via copious quantities of any and all the booze I could lay my hands on, I remained stone cold sober. A judge would have been proud of me. Three days later I was admitted to hospital for numerous tests. A week later I was given my diagnosis. The anti-GAD results and electromyogram showed I was indeed suffering from SMS. My second autoimmune condition. What joy! A good pair at poker and my life was the stake.
At least I was relieved to know I was not going mad, but I was still hugely apprehensive of the unknown prognosis of this ridiculously named condition that most men would die for (if it were what they thought it would be, of course). I found myself asking questions in the third person. It could not be me we were discussing. I asked about the prognosis and was told the spasms would get worse until I was bed-bound. I asked what treatments were available and was given anti-depressants (but the only effect they had was to send my blood sugar sky high. Quel trade-off!).
The following day, David and I went to the library and read what was available about SMS — not very much. We also looked on the Internet. We found that diazepam kept coming up as the first line of treatment for the few SMS sufferers who'd actually been diagnosed. I made another appointment with my neurologist and asked him about diazepam, but for some reason, he was reluctant to prescribe it. During the conversation, I realised David and I had obviously done far more research into this condition than he had. It seemed like a case of the partially sighted leading the blind. So I took the bull by the horns and, as politely as I could (under the circumstances), insisted he let me try diazepam.
December 1997
I began taking diazepam on December 15, gradually upping the dosage to find a comfortable level that bordered between symptom relief and narcolepsy. The improvement was astonishing. By Christmas, I was almost my old self (perhaps I am a little mad as I actually enjoyed shopping, preparing, cooking and entertaining 11 people over the holiday!).
Yet I still cannot believe all of this took four years to diagnose! Among other things we found on the net was the name of an SMS sufferer in Baltimore, USA. He was very helpful, and gave me the name of an SMS sufferer in England. It's almost impossible to describe the relief I felt to speak to someone else who understood what I was going through.
January 1998
It was suggested that I should see a psychiatrist to help me come to terms with, and accept the fact, that I had the dreaded SMS. To be fair, my neurologist (Alec Ming) was trying to do his best for me. I turned up for my first visit and was greeted by the psychiatrist, a whisperer who seemed to think that if he spoke in a normal voice we would be overheard. He also spoke very slowly. Perhaps his battery needed charging. I would have offered to do it, but that may have been a bit rude. Anyway, I had to keep saying “pardon?” despite the fact I was leaning as far forward in the chair as I could without falling off.
The 45 minute session ended (thank the Lord). As I got up to leave, he told me: “There will be no barrier between us when you come for your next visit”. When I asked what he meant, he replied: “The clipboard”. The look I gave him was one of utter disbelief. I was shocked and speechless (a first for me). I just said “OK”. The next session, a couple of weeks later, was no better. He had a trainee with him. I can’t remember what we talked about, but at the end of the session he asked if there was anything he could do for me. He was neither impressed, nor did he see the funny side of things, when I replied: “A bacon sandwich and a cup of coffee please.” It was then we both decided there was no point in continuing with the programme. As I left the hospital, I remember thinking the guy was as mad as a box of frogs.
February 1998
My neurologist asked me to go to the National Neurological Hospital in London. I readily agreed as I thought I would be having further investigations, or perhaps a second opinion. Progress — though to where I knew not. But it was still progress. The downside — I had to stop taking diazepam, which made it more difficult to travel as I had the spasms back, the anxiety and the stiffness. When I got there, I was seen and paraded in front of a room full of trainee doctors — and sent home! A 400-mile round-trip journey for nothing. I just couldn't believe it. But at least I got (a brief) chance to discuss with the neurologist my plans to form a support group. He (in front of the trainee doctors) showed great interest and said he would forward my details to other sufferers.
March 1998
I wrote to the neurologist in London to ask if he had made any progress. He didn't even do me the courtesy of a reply.
April 1998
I wrote again. Again, no answer. Not a person to give up easily (ask the Jehovah's Witnesses who called and ended up having to make excuses to leave), I asked my original neurologist if he would look into it for me, which he did, and he received a reply by telephone from a secretary saying they could not help. Dead end. The Stiff Man has been stiffed! I decided to go it alone. I telephoned Daran, who was the contact I had been given by the American sufferer, and he gave me the names of three other SMS sufferers in England with whom he was in touch. I wrote to them and they were all keen to belong to a group that could share knowledge and the strange kind of bond between strangers that a support group would bring.
May 1998
So, with just five members, the group was born and my newly acquired skill(!) of newsletter writing began. I had heard of a hospital, St Bartholomew’s, also in London, which was doing research into SMS. It was headed by Professor David Leslie. Although primarily a diabetic centre, they had found similarities with regard to GAD antibodies in diabetics and SMS patients. I contacted the research nurse, Pam, and was asked to send a sample of blood to be used in their research programme.
I discussed the support group with Pam and she was, and still is, keen and helpful. She gave my details to other SMS sufferers and the number of members began to creep up. Hardly a tidal wave of "new recruits" but it was one small step for Liz, one giant leap for awareness.
September 1998
Meanwhile, Dr Walton (bless him) continued to show a very keen interest in my condition. He arranged for me to be videoed with and, a month later, without diazepam. The aim of this exercise was to show what it's really like to doctors, consultants et al at the national diabetic conference. But when I saw the video, I was disappointed as, in my opinion, it just shows a middle-aged woman who cannot walk very well. David didn't agree. He was utterly shocked — and he'd had first hand experience of me "stiff man-ing around”, as he likes to describe it in his typically uncharitable but well meaning way.
Of course, the video had had to be edited to the minimum, but it does not show the sheer terror I was feeling, or reveal that I was dripping with perspiration, or how much I cried and shook. Nor does it show Dr Walton’s colleague taking me there — almost having to carry me. Nor does it show the look of concern and disbelief on Dr Walton’s face as the ordeal began. Perhaps they're all right and it's only me who doesn't get it because I've got it!
But at least there was one benefit — a vigilant nurse at the conference saw it and that led to the discovery of another new member for the support group. If, by showing the video, it helped anyone in any way, then it was worth doing it and, who knows, perhaps after seeing it a little bell may ring in the doctor’s head when a patient presents with symptoms of SMS, and an earlier diagnosis could then be made. At this point I have to say nothing on this earth would make me go through it again — apart from a guaranteed cure!
January 1999
I walked to the local supermarket with the children. Good grief — are they really eight and 10 years old now? On the way back I fell. Despite wearing thick clothing, I still managed to bruise my ribs, arm and hand. Fortunately, a Good Samaritan helped me up, but I was too shaken to walk. I seemed to be surrounded by people within a matter of moments. Two paper- boys took the children home and a lady took me home in her car. People can be kind and considerate after all.
February 1999
David has bought me a tricycle — £700! But it exercises my muscles. I am quite fearful of walking alone as I am afraid of falling. There don’t seem to be any warning signals when a fall is imminent and there is absolutely nothing I can do to prevent it. My whole body goes rigid, and down I go. I suppose that is why it is called Stiff Man Syndrome.
I am deviating now, but when Moersch and Woltmann discovered this condition in the 1950s and named it Stiff Man Syndrome, why do the politically correct core keep referring to it as Stiff Person Syndrome? Working on that premise, perhaps smallpox should be renamed vertically challenged pox, or chickenpox called fowlpox? German measles should be Euro measles. The list is endless. Political correctness, pointless form filling and endless red tape are anathema to me. Now I have that of my chest, I can continue my diary…
July 1999
Everyone who knows me, knows about my passion for music. My friend Vanessa and I went to a local folk club to see Benny Gallagher. It was Vanessa's comment after the show that really shook me. She said she had seen the 'old Liz' that night. The Liz I used to be. It made me realise how 'down' I had been since getting my diagnosis. Yes, I still went out, I still talked 50 to the dozen, I still told my usual stupid jokes with the punchlines somewhere in the middle, but I knew what she meant. I think I fell in love that night. I fell in love with the atmosphere, the music and with the feeling of being me again. For a time, at least.
I took the kids to Spain for a week (David was on his annual golf holiday/escape from Colditz). We stayed with Peter and Joyce (my stepmother) who have a house there. I don't know if it was the heat or the Med, but I managed to walk further than I might ever have expected — the fact that one has to keep up with "left right, left right" Peter may have had something to do with it. Anyway, I swam and even managed to dive into their swimming pool, and I have the photos to prove it. We went to midnight firework displays, aqua-parks and festivals. It all seemed so completely normal. There weren't even any ill effects from the daily exertions, apart from a few aches and pains. Remission is wonderful — winning the lottery can't be better (though it would be nice to compare…).
August 1999
My next quest was to register my name with the Council for Voluntary Services, a charitable organisation operating in the UK (different regions in Britain have similar organisations, and are known by a different name, but are the same kind of set-up). They have a list of charities, help/support groups and other organisations. Basically, what happens is if you have an illness or are the victim of any kind, the chances are that the CVS will be able to give out a contact name and telephone number?
David has bought many things to aid my mobility, the most expensive item being a tricycle, which was very useful — until I went into spasm while riding it. I was too fearful of a repeat occurrence, so bye bye bike. Never mind, it was very heavy — especially when Christopher was sitting on the back, the lazy lump.
February 2000
I was interviewed by our local newspaper and, through that article, found two more sufferers locally.
March 2000
I heard from a member of the group about a neurologist who practices in West Yorkshire. He has a greater knowledge and interest in SMS than my original neurologist. I am fortunate to now be under his care. He has started me on Baclofen. So perhaps I am one of the lucky ones as I have two very caring consultants looking after me. I also have a very supportive network of family, friends and neighbours.
May 2000
I took the children to the seaside. I was fine driving there, but when I got out of the car the stiffness started. Eloise held my hand and, with the help of my walking stick, we got on to the promenade. By the time we got to the ice-cream shop I found it difficult to sit down because by then my back and left leg were in spasm. I told the kids to go and choose what they wanted, hoping that by the time they came back my body would have calmed down. Fortunately, it did, but I was still very stiff.
While walking back, I held onto the rail at the edge of the promenade. Unfortunately, I couldn’t let go — even when an elderly lady approached holding onto the same rail. Poor woman — she had to walk around me! So much for consideration for senior citizens (I hope she realised I had no choice…).
The children wanted to go on the beach, so when I found a seat, they helped me to sit down and off they went. After about half an hour I was getting cold and wanted to go, but I couldn’t attract the children’s attention, and certainly couldn’t get down the steps to the beach. I just wanted to cry. When they came back we managed (slowly) to get back to the car, and finally I began to relax in the comfort of my four-wheeled cocoon. Strange how being in the car is so reassuring — almost like shutting out the real world.
We arrived home and I told them they could watch TV. I began to prepare our evening meal and then the tears started to flow. And flow. We were in danger of drowning! The kids have never seen me cry (except when watching soppy films) so I told them it was the onions. Lame excuse, but the best I could manage through blotchy eyes and tear-stained cheeks. I must have looked a real sight.
When David came home I told him about the day and the tears started yet again. That evening I cried solidly for about two hours and went to bed absolutely shattered at about 8.30pm. I felt such a useless wife and mother and a burden to everyone. That was the first time — and will be the last — that I feel so sorry for myself. I hope…
June 2000
The latest and most frightening episode happened a few days ago. I was getting in the shower as Eloise was getting out and I began to stiffen up. Christopher got in too. I managed to help him a little, but my back went into spasm and, with his help, I got onto my knees and waited for the spasm to ease. It was then I realised I couldn’t get up. I was completely rigid. I panicked and started to hyperventilate.
Eloise, who despite her youth, is as able to care and soothe as well as an adult, said: “Mum, breathe slowly, nothing will happen to you while I’m here”. Such maturity. She put her arm around me and gently massaged my back (at the same time ordering Christopher to pass a towel to keep me warm). I calmed down a bit and thought it might be a good idea to try and get one leg over the side of the bath — not a good idea as it sent me into spasm again. At this point I realised I needed reinforcements and Christopher telephoned Isobel, a long-standing friend who lives just around the corner. Like a one woman Seventh Cavalry, Isobel charged to the rescue and I was duly lifted out of the bath, dried and dressed.
July 2000
Report in the Lancet: 50% of SMS sufferers are also type 1 diabetics. Interesting.
We all went on holiday to Spain. I was so sure I would have been able to do the things I did last year, but I had not really given a thought to the fact that SMS is a progressive illness, and it was a year since I had been abroad. I spent a lot of the time holding onto David, and on a couple of occasions found it very difficult to get down to breakfast. I wonder if we will ever be able to go abroad again.
August 2000
Interviewed for a magazine called Best. I was very disappointed with the article. Apart from anything else, they did not include the support group telephone number. They did, however (to their credit), print my letter in the ‘You tell us‘ page in November, giving the details they had not printed in the original article. I received quite a number of calls from potential SMS sufferers.
Window cleaning day and it was very hot. I asked the guys if they would like a cold drink. When they had finished, they brought the glasses to the door and we chatted for a while. Then I felt my back starting to spasm a little. Here we go again. I was holding the glasses in the crook of my arm and grabbing the wall with the other hand, trying to appear 'normal'. After they had left, my back and left leg were so rigid I could not move. I tried to work out a plan of action but soon realised I couldn't. If I dropped the glasses I would have both hands free enabling me to grab hold of the door handle, get down on my knees and crawl to the living room. That would not have been a good idea as I was bare footed, so I would have either suffered a broken toe or would have been crawling on broken glass. So many choices! Anyway, this particular story had a happy ending as a neighbour chose that very moment to pop in and rescue me.
October 2000
Interviewed by The Daily Mail. I told them I did not want to take part in a tacky article and stressed the link with Type 1 diabetes and the importance of printing the support group telephone number. They agreed. They also interviewed my neurologist. They even took some fantastic pictures that made me look young and beautiful — David must have been impressed because he got hold of some prints and had the best one framed. I was inundated with calls from SMS sufferers and potential sufferers after the article appeared. I even received calls from total strangers, ringing to wish me luck. Such is the power of the Press (David's a journalist and kept telling me so, but until then I didn't really believe it).
I now have 22 members in the group. Some are in a more advanced stage of the illness, but we all share a sense of humour which helps us cope with our relatively unknown illness (I could write reams about the amusing things my family and friends say and do to me, but that’s another story). There are many anecdotes and there have been times when it all seems so unfair but, as they say, "c'est la vie".
November 2000
I had a call from the TV programme "This Morning" asking if I would appear on the show (they had read the article in The Daily Mail). Great news! More exposure! It was scheduled for Wednesday. But, to cut a long story short, they cancelled two weeks in a row because there were more pressing items which they wanted to cover — one of them being the whatever anniversary of Coronation Street. It was no contest and I had to admit the pulling power of Corrie was (marginally) greater than a little known disease with a funny peculiar name. They said they would get back in touch with me, but they never have. One day, perhaps.
Interviewed by The Sunday Post, a Scottish newspaper. They are not going to publish until the New Year because they want a time lapse because it's it been in The Daily Mail. Fingers crossed that it will appear and that I will again get a good response.
I was called by a London based radio station and asked if I would talk about SMS (do I need to be asked?). Naturally I said yes. Then the bombshell — they would call at 12.30 tomorrow and I would be live on-air! I had no idea what questions they would ask, and sat half the night writing notes. I spent the morning praying they wouldn’t ask me a question to which I would not know the answer. At 12.15, and panic looming, I hit the gin!
It must be a legacy from my days in local amateur dramatics because when the ‘phone rang, my nerves vanished. I had wondered how I could possibly talk on air for 10 minutes, but I did. Unfortunately, I didn’t receive any calls, but as I had never heard of the station, it’s reasonable to assume they don’t reach a very wide audience. Still, it’s all practice for me in my quest to raise awareness and to find other sufferers.
December 2000
Claire, a group member was interviewed by Woman magazine. Once more, I received a lot of calls.
I saw Dr Walton for my usual diabetic check and I was feeling particularly low. December is a hectic time for anyone, but I was feeling so anxious (anxiety is a major part of SMS), and wasn’t sure if I could cope with organising Christopher’s birthday, the run up to Christmas and the New Year party, which everyone takes for granted we will host. I must say that physically I probably do less than everyone else involved (pretty good, eh?). Perhaps I should relax and say yes when someone offers to help, but my stubborn nature always seems to take over and I end up anxious and stiff. I suppose I should be happy, and I am, that people actually want to spend their time here with us rather than elsewhere. As usual, I am deviating from the point of this paragraph. Dr Walton is referring me to a medical consultant specialising in disabilities. I am not sure where this will lead.
January 2001
I wrote to Balance (a bi-monthly magazine for sufferers of diabetes) to encourage them to write an article for their magazine. They seemed a bit perplexed and said they had never heard of it. But at least they didn't say no.
I am now only able to get to my car with the help of a three-wheeled walker (I asked if it was available in British Racing Green, thinking I would be able to go faster, but it wasn’t, and I can’t). My symptoms seem to be snowballing, but not everyone with SMS is the same. Some people have had it for years and are not as bad as me, and the opposite also applies.
February 2001
I had a call from Pam (Professor Leslie's research nurse). The British Neurological Surveillance Unit is contacting all neurologists to ask for details of any SMS patients they have. It would seem the research programme is moving forward again.
March 2001
Stephanie, a group member, was interviewed for Chat magazine. She was not happy with the result. Quite a lot of what was printed, she claims, she did not say, and to top it off they put in her telephone number instead of mine. So all of the calls she received had to be redirected.
I saw my neurologist and he suggested I alter my medication as the stiffness was affecting me more than the spasms. I have increased the Baclofen and slightly decreased the diazepam. Too much of either makes me drowsy.
Two weeks later I was seen by a consultant for people with physical disabilities at a local hospital. This was a referral made by Dr Walton, whom I had seen in December when I was feeling very low and the stiffness was particularly bad. I was seen and examined by his registrar and, as is always the case, I had to explain what SMS is. He was a pleasant young man and appeared very interested. He spoke to my consultant, who then came in to see me. He prescribed Tizanadine (a second line treatment). I have not, as yet, had the prescription filled. I have a gut feeling that on top of diazepam and Baclofen I am going to end up like a zombie from one of those awful but laughable Hollywood B-movies. Others might find it amusing, but not this time. I have written to my neurologist for his opinion. He has advised me to try it. The only drawback is that I have to have liver function tests done every four weeks. Still, if it helps, I don’t mind.
I have written begging letters to Richard Branson, Chris Tarrant and Chris Evans for help to run the group. I received very nice replies from both Richard Branson and Chris Tarrant, but sadly the answer was no. Chris Evans was probably too busy with Geri…
May 2001
I have been taking Tizanadine for four weeks now. I am taking 2mg qid, and will have my first liver function test later this week. The test result turned out OK, thank the lord.
I wrote to Dr Peter Brown at the National Neurological Hospital in London asking if he would put together an "idiot's" guide to SMS for new members — something that would be easy to understand. He duly sent an information sheet that has been very useful as it is to the point and, as requested, easy to read.
June 2001
Have had a few scary incidents all involving spasms and stiffness. Trying to leave the supermarket, I had to be taken to my car, this time in a wheelchair. I had been fine while shopping, but as soon as I got outside I just could not walk. The trolley man has helped me in the past. With the help of Christopher, his friend, the trolley man and a wheelchair I got back to the car. I was too frightened to feel embarrassed or to even be aware of anyone seeing me in such an undignified state.
The following week the children and I went to a local garden centre. I managed to get to the door but could not walk around inside. I told one of the staff what I wanted and after he got a seat for me, he went to get my order. I managed to walk outside, but could not get as far as the car. I asked a passer-by if I could 'borrow' his arm to get to the car. He obliged and told me he was an ambulance driver. It still surprises me how kind and helpful strangers can be.
Sunday Post (June 3rd) have published the interview I did last year. I have had quite a lot of calls. Two of them have already been diagnosed with SMS.
Last night I was very stiff, and having got into the bath, my back decided to go into spasm yet again. It didn't last long, but left me feeling stiffer and more anxious. I could not lie down and had to sit like a small child while David washed my hair and helped me out of the bath. I managed to dry myself in between the children coming in and out, asking questions. Christopher: "Mum, can Adam sleep here tonight?" Eloise (aged 11): "Mum, do you think I should start shaving my legs?"
As I was sitting on the bathroom floor (not exactly 'fur coat and no knickers', but certainly pyjama top and no bottoms) trying to relax enough to get up, Christopher jumped into the bath, and I was wet again. Eloise preened herself in front of the mirror while doing her impersonation of Britney Spears. It is at times like this that I realise how accepting and resilient children are. They knew I was having problems, but also knew if I needed help I would ask. Otherwise, they just get on with what they are doing.
I could hear David talking to my brother and sister-in-law and then footsteps coming upstairs. My brother walked in and I shrieked "Get out”. I don't know who was most shocked — him or me. It was becoming more like a Brian Rix farce by the minute. I called to Sue, my sister-in-law. She came up and helped me put on my pyjama bottoms, went back downstairs and returned with two glasses of wine (both for me). By the time the children had finished in the bathroom and Sue and I had emptied our glasses (so they weren't both for me after all), all I could do was laugh at the events of the last 45 minutes. It had gone from the ridiculous to the sublime!
There have been many upsetting incidents and many funny ones. For instance, when one sees a 40-something woman walking across the road with an 80-something man, one assumes it is the former helping the latter! It is at times like that when I have a quiet giggle to myself.
August 2001
School holidays. We didn't go abroad as I knew I would not be able to walk any distance, so we had the old fashioned 'days out'. Unfortunately, every day ended up with me needing help. Fortunately the kids accept this as the norm, but although David is helpful and understanding, he must feel as frustrated as I do, as I can be relatively OK one minute and in spasm the next. Therefore, there is anxiety on both sides. Not surprisingly, I suppose, it’s getting harder for any of us to keep seeing the funny side these days.
October 2001
I have been in touch with Diabetes UK. I sent them a copy of Dr Brown's information sheet. They told me SMS information is now available on their help line, although I haven't checked it out as yet. I have also been in touch with Balance again. I was told they prepare months in advance, therefore it may be some time before they can do anything.
November 2001
Saw my consultant for people with physical disabilities. I am now taking 2mg of Tizanadine qid. Still a relatively small dose, but I am feeling stiffer than when I began taking them. He advised me to decrease the dosage with a view to stopping altogether, which I am doing. He is also referring me for a wheelchair.
December 2001
I am now free of Tizanadine, but as it is the Christmas period, I don't imagine I will be able to assess how it will affect me for a while yet. Christmas was better than I expected this year. Perhaps it was because I began the preparations and got things organised well in advance. It made it much easier catering for the masses, as most things just needed to be taken out of the freezer.
Ken, a group member, has had his story published in his local paper. The headline read ‘The summer before this happened I climbed Snowden. Now when I go out I have a wheelchair’.
January 2002
I have been assessed for a wheelchair, and it has arrived. Why am I so pleased? Anyway, it folds up and will fit in the back of the car. It is not as easy to use as I thought it would be. It's OK on the flat, but even a slight incline is difficult. Still, as I don't go out alone there is always someone to push it. Wheelchair Olympics next!
I was right about the Tizanadine. I don't feel I am as stiff as I was when I was taking it. Unfortunately, that does not mean I don't get stiff anymore. Ho hum.
I have been working at home as a volunteer for a local charity, APPD (Association for People with Physical Disabilities). They have published an article I wrote for them about SMS, which led on to finding another new member for the group.
February 2002
Via the CVS we now have charitable status. Hurrah! I and other members of the group are trying to raise money, for research. So far I have only written (again) to Richard Branson. It's tiring work trying to write begging letters. Sadly, I received (yet another) "Sorry, but no" from Sir Richard. It makes me wonder a) what am I doing wrong and b) is our illness too rare for anyone to care about?
I saw Dr Walton. He told me I now have hypothyroidism (third autoimmune disease — how lucky am I?). I am now taking thyroxin 50mcg daily
March 2002
March 25: I received a call from a new sufferer, Jane. I spoke at length with both her and her husband, Clive. She wanted to join the group and be part of the research programme at Barts hospital. I (as I always do with new members) sent her copies of all past newsletters and informed Barts. On Sunday 31st I got a call from Clive informing me that Jane had died the day before. She was just 42. She is the second member of the group who has died since I began running the support group. How very, very sad. I must say here and now, though, that neither death was directly SMS related but that took nothing away from the grief everyone felt.
I was talking to Howard, a group member. The subject of birthdays came up and I told him it was my 50th on March 24. I was astounded to receive a beautiful bouquet of flowers delivered from Jersey. Having said that, I still get a warm feeling inside whenever I get letters or cards from members showing their appreciation. It lifts my spirits and keeps my determination at full strength.
April 2002
I received a call from Jane's undertaker stating that Clive had asked for no flowers, but instead wanted donations to SMS research. What a kind gesture. Especially as, after all, we had only spoken on the 'phone twice, and had never met.
April 3: Christopher had his friend Adam here for a sleepover. By 9.30pm I was finishing off my Uni exam paper, which had to be handed in the next day. Eloise, Christopher and Adam were charging about as kids do — despite my yelling at them to be quiet. 10.20pm and the telephone rang but I really could not afford the time to talk. However, the caller was determined and kept on talking. 10.35pm and I saw Christopher walk past the office and up to the loft with a bottle of Jiff in his hand. Hmmm. Alarm bells ringing? You bet. I went up to find the room full of boxes of toys, books etc, and three children scrubbing the floor where they had spilled some 'won't come out, no matter how much you try' ink. It was the last straw, I yelled at them for making such a mess, for spilling the ink, for making such a noise when I was trying to work (and anything else I could think of)! What they didn't tell me was why they had taken everything up there, but it became (embarrassingly) apparent the next day.
I had told the kids a few days earlier that although the group had achieved charitable status, there was no point in me opening a bank account as there was nothing to put in it. It seems they were listening…next thing I know they had sorted through their toys and books and were determined to hold a car boot sale in the garden! They made posters and stuck them to lampposts advertising their tabletop sale, to be held that day and the next, in aid of the SMS charity. I only found out what they were doing when I saw the garden furniture being moved into the front garden. Five minutes after they had started, Christopher came running in to tell me they had made Ј5.50.
Apparently, he had stopped a passing car and asked the poor woman to buy something (I wonder who he gets that cheek from? Not me, obviously). The kids asked for a volunteer to sit and have a wet sponge thrown at them (10p for four throws). Nobody was forthcoming so Christopher was volunteered. He sat on a chair in his swimming trunks and goggles and quite enjoyed the experience. I felt so proud of what they had instigated and of the way thy got other local children involved, I had to do something to thank them. I rang the Hull Daily Mail, gave them the story and they sent a photographer round the next day.
The story was published, but there were so many errors that I rang the paper to complain. Fortunately, I knew the reporter whose name was attributed to the article (even though she had not written it). She said that if enough interest were shown in the article she would do a follow-up story. Naturally I 'phoned all members living in the area the newspaper covered and asked them to ring the Mail demanding more information! The following day I got a call saying the Mail would like to do a follow-up story — bingo!
I also received a call from a woman telling me she thought her horse (of all things!) might be suffering from SMS. I felt sure it was a wind-up, but in fact it wasn't. I rang Barts hospital to tell Pam about it and she told me that there is an equine form of SMS. The spooky thing is that she and Professor Leslie had been discussing it less than two weeks previously.
Late one afternoon and I was on my way to have a shower and walked along the landing. As I reached the top of the stairs, the usual feelings of anxiety started. Why can I walk along the landing and feel safe, but as soon as there is a gap (the staircase) I feel so vulnerable? I held onto the newel post for support. The top airing cupboard door, which is at the other side of the stairs was open, I took hold of it, but stupidly grabbed the handle, which is quite high up. Standing facing the top of the stairs with my arms in a five-to-three position meant I could not move. The only thing that was moving was my back. It was in spasm. It felt like someone kept taking penalty shots (my back being the goal). And nobody was due home for at least an hour.
I tried to keep calm by listening to, and answering questions out loud, to The Weakest Link, which was on in the kitchen downstairs. I knew I had to do something, as my left arm was beginning to get pins and needles, but what? The upstairs windows were open, so I started to shout for help. It started with a whisper, because I felt embarrassed and have never shouted for help before, but it ended with decibels normally associated with a rock concert. Deep Purple eat your hearts out! Unfortunately (surprisingly) no one heard me. Eventually the spasms eased and I began to calm down enough to shuffle my feet to the left and slowly move my right hand onto the airing cupboard door. I then collapsed onto the floor. Thank God I was now safe. I looked at my watch and realised I had been stuck for 45 minutes. It had seemed like an eternity.
I went to the Playhouse in Beverley last night, one of my favourite venues to see live music. Barry Nettleton (the owner) said he had read the latest article in the local paper and offered me the use of the Playhouse to raise money for SMS. I couldn't believe it. So, I now have the task of finding a selection of bands to play (another Everest to climb). Sadly, it never came to fruition as he had been drinking when he made the offer, and when I approached him a short time afterwards he couldn’t remember having said anything. *******!!!!!!!!
I went to Morrisons supermarket with Christopher. My back was quite painful but I thought I could manage. We hadn't got very far when I realised I could not walk another step, and had to ask for a wheelchair. The staff were really helpful. One of the assistants got the rest of my shopping, helped me through the till and took me to the car. She loaded up the car and helped me in. I have been 'wheelchaired' to the car on a few occasions in the past, but I have never had to use it inside the supermarket before.
It has been one of those days today. I was late for my art class this morning, which made me anxious (anxiety about things which are not really of any importance, is, as I have mentioned before, one of the symptoms of SMS). I think the anxiety decided it may as well give me grief for the rest of the day, and just for good measure the spasms and stiffness thought they would join in. So, in a nutshell it's been quite a naff day.
May 2002
I rang the council to ask about the dos and don'ts of charity fundraising in Beverley. I also asked if the Jubilee weekend was free. I could not believe it when they told me it was. So I have both days — the Sunday and Monday! I have bought mini dustbins from the local cheapo shop to be used as receptacles for all the cash the thousands of willing givers are going to donate, and Tony (a group member) is making the labels to put on the bins and flyers to hand out. The great thing is there is so much going on in Beverley on those two days, so hopefully there will be a lot of people around. I 'phoned the local radio to ask for volunteers. The local paper have printed three articles about SMS, to help raise awareness and to publicise the charity event. I am going through my address book to find as many people as I can to help. I have managed to borrow collection tins, draw up a rota for the volunteers, get a parking permit, and put in place all the little things which would enable me to go ahead. It must have seemed like a shark feeding frenzy to my family and other animals!
At last the Jubilee weekend arrived and I nervously approached the market place, praying for the stamina to enable me to get through two days in a wheelchair. Fortunately, the weather was very kind on Day One, as were the football fans as they came out of the pubs — England had just drawn with Sweden. Most of them, at least — two worse-for-wear thirty-somethings suggested I was a poor person and should indulge in sex and travel. No further explanation of this euphemism is necessary.
Everyone else seemed to be enjoying the entertainment, particularly the highlight of the day — The Backbeat Beatles. Some time ago I saw them play, and promised them a chocolate cake when they next came to town. When I gave it to them, I also asked if they would give the charity a mention, which they did, and at one point even paused during the gig, saying they would continue when more people had put money into the charity tins. It worked!
I have a confession to make here. I had a bottle of red wine tucked down the side of my wheelchair. As a result of partaking in a few sips, I found myself much more relaxed and chatty. Actually, forget the chatty bit, as I never need anything to help me talk. Anyway, there I was sitting in my wheelchair listening to the Backbeat Beatles when a guy asked me if I would like to dance. Of course I said yes, but told him he must not let go of me or I would fall. So he lifted me up (in quite an ungainly fashion) and danced/pranced around for the duration of two songs. It was only when I saw David’s face as he was talking to my GP that I sobered up very quickly. After all, I am supposed to be disabled! Anyway, I behaved myself for the rest of the day. Up to this point, I bet you all thought I was a little more demure. Well, it just goes to show, even disabled people can make a complete fool of themselves sometimes. And why not.
The following day it rained almost non-stop and, unfortunately, those brave few who turned out were the same lot from the day before — which meant they had already given. At least, that was their excuse... Nonetheless, it was great fun overall, but I'm not sure I would undertake such an event again in a hurry. We raised a very creditable total of £543 — not bad for a first event. We certainly earned it. The charity will use the money to help to continue to raise awareness of SMS. The local paper wrote a small piece about the event, but thankfully made no mention of my antics…
Nothing I have achieved since 1998 would have been possible without the help and support of my husband who has patiently and (usually) willingly got stuck in whenever needed. He may love his car (a Subaru Impreza Turbo) and his dog Ollie more than his wife and kids, but he does a reasonably good job of hiding it…
June 2002
I have sent out the latest newsletter and a questionnaire and now I am going to have a rest for a while.
Why did I say that? I believe it was just wishful thinking as I'm meeting myself coming back. I got a call from a newspaper to confirm details about an article which Claire, another member of the group, was having published. Surprisingly they 'phoned me back and read me the copy. Thank heavens they did, as they had quoted me saying something that would have had the medical profession coming down on me like a ton of bricks. It just goes to show, it's not what you say, it's the way you say it, and of course the written word does not allow for that. So for a number of days there were 'phone calls backwards and forwards until things were put right/write.
Two more calls from medical information centres asking for any further details about SMS and the support group. It must be New Year at the information collectors' offices.
I have contacted Balance several times over the last two years, urging them to print an article about SMS (after all, 50% of SMS sufferers are type 1 diabetics), only to be told they plan months in advance etc etc etc. So, when I rang them this time, I asked to be put through to the editor. I told him I would make him a chocolate cake — with a cherry on the top — if he would oblige me in my quest for raising awareness. Guess what? Four pages in the next edition. Poor guy, I never did send him the cake.
Tony has set up a web site for SMS sufferers. I can't take any credit for that at all. In the words of the song by Shaggy, "it wasn't me". The only problem is the amount of emails I am receiving from abroad. Although I answer them, I never feel I am of much help. However, on the upside we have gained a few new group members. For anyone in the US reading this, there are four email addresses you could try. They are: stiffperson@comcast.net stiffman@gurr.org sms@stiffman.com and owner@stiffman.net
July 2002
I approached a shopping centre to ask if we could organise a charity collecting day. They told me they did not allow it, but that the money people throw into their wishing well is donated to charity. I was able to collect said money the following week. It was much quicker to drive nine miles, collect the bags and drive home again, than it was counting it. Armed with a pair of Marigold gloves, I began picking out the bits of grit and chewing gum (urgh!). We got over £200. Not a bad result.
August 2002
I had a call from a guy in London who had seen the article in Balance. I don't know why he was reading it (perhaps he was in a GPs waiting room and all the motoring magazines had disappeared). He was working in London, but was from New Zealand, and his mum (Margaret) is an SMS sufferer. I sent him the usual information, which he forwarded to her. A couple of weeks later I got a call from her. She knew of no other sufferers. We are going to keep in touch. It made me think — I don't know of any other country in which a support group exists. At some point in the future I will ask Tony if he can ask that question on our web site.
I have received the answers to the questionnaires I sent out in the last newsletter. There were 35 replies and the results, which may be of interest to anyone logging on to this site, are as follows:
The average age when diagnosis is made: 48.
Length of wait for diagnosis: Average is 4 years.
Of those originally misdiagnosed, depression (or variants of) was by far the most common answer.
SMS medication: Most people take Baclofen (20), closely followed by diazepam (17). Gabapentin (Neurontin) (6) and Rivotril (Clonazepam) (7) were the main others.
14 members are type 1 diabetics.
Eight diabetics said they felt stiffer when their blood sugar is high.
Ten people said they knew of other family members who also have an autoimmune condition (I would hazard a guess that the figure may be higher, as not everyone knows if a particular condition is autoimmune).
November 2002
I had a call from the CVS. They are the organisation who let us use their charity number. I was advised that in order to satisfy the Charity Commission requirements, we should form a committee and draw up a constitution. As a complete novice, this is probably the most daunting task to date.
OK, I am now going to take the break I said I would take back in June.
December 2002
Nothing to report, apart from the usual 'phone calls, form filling etc.
January 2003
We now have 56 members in the group. I had a call from NHS Direct. They wanted me to send information about SMS. I was a bit puzzled as I had already sent them everything I had. What I did not realise is that they do not operate from a central body. Apparently they are in the process of centralising their database so when I provide them with info in the future, it will be available throughout the country.
April 2003
We have applied for charitable status in our own right. I am hoping like a person who has hope at the top of her list, that this will give us the credibility we deserve.
May 2003
It’s funny where a simple conversation can lead. I was speaking to someone who used to work for a pharmaceutical company called Pfizer. He suggested I write and ask for a donation. To cut a long story short, I did, and they sent one. They also told me about the Neuropathy Trust. I wrote to them and they published an article in their magazine ‘Relay.’ No photograph this time — shame really, I quite like posing.
We have just had our living room papered by a so-called professional — I will say no more on that particular disaster, except I know I would have made a better job in the days when I could climb up steps, lean over to one side with a cloth in one pocket, a pair of scissors in another, brush in one hand and a strip of wallpaper in the other.
Anyway, I washed the curtains and spent heaven knows how long on the floor ironing them and the linings (12ft long patio doors). That bit was easy because when I am on the floor there is nowhere to fall. The fun started when I tried to hang them up. I had managed one curtain and had almost finished the second. I knew I was stiffening up, but thought “just this last bit and then I’ve finished.” However, my back realised this was a chance to give me some grief. Somehow it knew there was nobody about to come home, or visit, so it knew it could do what it does best. Oh good, it thought, she hasn’t got her ‘phone in her pocket as she usually does, so let’s get going, I was standing on the second rung of the stepladders and had my right hand on the curtain rail.
My back went into spasm, and there I was — stuck! I was only about a foot from the floor. I thought about just letting go and falling to the floor, but I knew if I did that my body would go into spasm. I thought about putting both hands on the rail in the hope my weight would bend the rail enough to enable my feet to touch the floor. However, knowing my luck it would probably have snapped, and I would have fallen into the conservatory and crushed my beloved tortoise, George. If only the conservatory door had been closed I could have reached the handle.
The ‘phone rang twice while I was perched like an enormous upside down parrot (minus the beak). Actually, I looked nothing like a parrot, more like a complete idiot, who should have known better! I managed to knock the ‘phone off its cradle with my foot. I felt sure I could have used my toes to ‘phone someone, but no, it fell to the floor. Fortunately, the spasms eased quite quickly, but somehow I could not let go of the rail. Anyway, I don’t know how long I was up there, but it was somewhere between reading the Sun and doing a 2000 piece jigsaw puzzle. The first thing I did when I got down was to pour myself a large vodka — and it tasted good and did me good.
July 2003
Subscribed to a new enterprise called GP Surgeries’ Healthcare Guide. A half page entry. It is to be distributed to surgeries in Northern Ireland. Let’s hope the Ј200 it cost will bring us some new members. Apart from anything, the Irish are (in my opinion) an amusing lot. David went on a golfing holiday to Southern Ireland two or three years ago. He came back with some funny stories, eg driving down a road towards a junction there were road markings: The first one said “Slow”; a few yards further it said “Slower.” Another day the six of them decided to go for a pint. Having driven around in circles (there were no signposts) they found a pub. They tried the door, but it was locked. A moment later the landlord came to the door and informed them the pub didn’t open until six o’clock, and then said: “Come in and have a drink while you wait.” There are lots more tales to tell, but this is meant to be a diary about life with SMS — so if you want any more you will have to give me a call.
September 2003
We have confirmation that we are now a registered charity. ‘Stiff Man Syndrome Support Group’. Registered Charity number: 1099206.
Another member, Melanie, had her story published in a magazine called Take a Break. Unfortunately, the support group details were not included.
March 2004
Well, that was certainly a long break! Having said that, the only thing I have been remiss about is updating my diary. There is rarely a day goes by that does not involve something to do with SMS. In fact, when I think about it, I work harder now than I did when I was nursing. I don’t mind — but I do miss the salary…
The East Riding Carers Support Service have published an article about SMS. I am still puzzled as to why. After all, it is carers’ magazine. It is a concern of mine — who cares for the carers? Everyone who calls at my house asks how I am. If anyone ‘phones it is the same. But who asks, “How is David”? He has five slipped discs, and is always in varying degrees of pain. I suppose they still think his primary role is my carer. Wrong, sad but true.
If you look back you will see a reference to David putting his beloved car (a Subaru Impreza Turbo) before myself and the kids; well, he has now bought a Subaru P1, a limited edition, apparently, but I’ve no idea, except that it’s blue. It took me three days to even realise it was on the drive — he took me to the garage to fetch something and I went straight past without even noticing. I think David was a teeny bit annoyed and he stood there like a man posing, introducing something special and I hadn’t even spotted it. So I expect that apart from falling further down his list of priorities, we will be living on bread and water for the foreseeable future.
April 2004
I kept the appointment with my consultant for ‘people with physical disabilities’ (normally I ring to cancel, as there is no point in wasting both his and my time if there is no real change in my condition). I was feeling so low I asked if I could have a plasma exchange. Naturally he said no. I had told him about the non-SMS ‘problems’ I was having at home. He obviously realised my state of mind and referred me to my original neurologist. I will be seeing him in June.
However, there is no doubt my SMS is getting worse (although I try to kid myself it isn’t). There are good days and bad days. On a scale of 1 to 10 (10 being bad), a good day is 4 and a bad day is 6. So really I should be grateful as there are others who would be delighted with that. I can still (occasionally) drive my car, but the only things I really drive are people — I drive them mad! Most of the time I manage around the house. The garden is OK, providing I have my walker. I use my walker when I am out, and a wheelchair if I am going to be out for a long period of time. I don’t have the confidence to venture out alone which frustrates me more than anything. It seems so totally irrational. For example, why can I cross a road if someone is with me, but can’t if I am alone? That is just one example of this weird phenomenon.
I have to deviate a bit here: Have you noticed people who ‘drive’ motorised scooters? It seems everywhere one goes there is a motorised scooter aiming for an unsuspecting pedestrian — myself included. OK, let’s get back on track again. I am hoping this is just another trough I am going through, and that I will return to ‘normal’ again.
May 2004
May 1: One of the saddest days of my life. Mum-in-law died. She had been living with us since last July after being diagnosed with terminal cancer. During that time she had a heart attack and two cardiac arrests. She never complained or told me if she had any pain, although fortunately she didn’t really suffer until a few days before she died. She was at home with all the family around her when she died, which is what she and we wanted. What am I going to do when it hits me that she is no longer here? Typical of me — here I am wondering how I will feel and not even considering the effect it’s having on David…
We have had another charity committee meeting. One of the things we decided to do is to have an awareness week in September.
June 2004
I have seen my original neurologist. He wants me to try IVIg. I don’t know if I mentioned it earlier in this account of my life with SMS, but I drink vodka to ease the stiffness — a bottle usually lasts me about 2-3 weeks. My consultants know, and don’t have a problem with it. I purposely didn’t have any the day of my consultation, and could barely walk. I wanted him to see me at my worst. After leaving his room, David and I entered the lift and as usual there had to be an amusing incident. What could be the worst situation for someone suffering from the startle response (one of the symptoms of SMS)? Don’t know? Answer: Being stuck in a lift with someone suffering with Turettes Syndrome (sorry, not sure of the spelling). I bet the chances of that situation happening is about the same as getting SMS. Every time he shouted or made a high pitched sound, I jumped! I wonder which one of us was the most embarrassed. I’m sure he must be used to people looking at him, but not used to someone jumping at every noise he makes. I wish I had had the time to explain that I knew what his problem was, and had been able to tell him mine. If he had the same sense of humour as me, I imagine we would have both have curled up laughing.
July 2004
I received a ‘phone call on Wednesday evening at 7.30pm from a doctor at Hull Royal Infirmary telling me I was to be admitted the following morning at 9am. I was to begin a 5-day course of IVIg (Intravenous immunoglobulin) on Friday. I arrived at the hospital, with step-mum there to keep me in line, and was met by Dr Nandakuma. I asked him why I was being admitted the day before my treatment was to start. He explained that I could well lose the bed if I were to wait until the next day. Anyway, he formally admitted me and, after giving him a million reasons as to why I could not stay, he gave in and said (in a defeated way) “Oh, alright then.”
I arrived the next day feeling a bit apprehensive. In fact my worries proved to be unfounded. The nursing staff were very good. There were quite a few amusing incidents during my stay. The first was the morning after my admission. I went to get a shower about 6.45am. I had almost finished when one of the nurses called to me saying they needed my room and I would have to move. When I came out of the shower, my bed, case, clothes, everything had gone! I had to search the ward for my bed. When I eventually did find it, I also found I had gone from a single room to a 12-bed ward.
I spent a great deal of time that day being talked at (yes, talked at, not to…) by Joan, who was in the bed opposite me. She told me that her hair was a mess, so I used my styling spritz and a hot brush to sort it out. The next morning I went off for a shower and smiled at Joan as I walked past. There was no response. I whispered “good morning”. Still no response. When I came back, she said “Hello”, and told me she had just woken up. It was later that day I found out she had a glass eye and that she can’t blink!
One of the other ladies had been for a shower and told me she could not wash her hair as she didn’t have any shampoo (she hadn’t seen the gallon bottle on the floor of the shower cubicle floor). So I took her to a single room with a wash basin and washed her hair for her. Another lady was having a hot flush. I was able to help out there, too, as I had taken a cooling spray in with me (expecting the ward to be roasting). Word got around quickly that if anyone wanted anything they were to ‘ask Liz’.
On the Saturday Eloise and Christopher were having a joint birthday party and sleepover. About 3pm I got a call from David asking where I had ordered the bouncy castle. I couldn’t remember. Anyway, it hadn’t turned up. Half an hour later I got another call telling me our gas BBQ would not work. Fortunately, David managed to borrow a small one from a neighbour, which meant the food had to be partially cooked in a frying pan in the kitchen before being transferred to the BBQ. My friend, my brother, his wife and a neighbour all helped out. During this time a few items were smashed or melted, but by far the worst thing was the fact that they finished off the last three bottles of my wine club wine. I wouldn’t have minded, but I always save the best ones for last (for last, read me…).
While all this was going on, I was sitting very comfortably watching TV. On Sunday I used my mobile to ring home and find out if I still had a home to go back to. One of the nurses was watching me, shaking her head and tutting. When I had finished my call, I went over to her to apologise for using a mobile on the ward. She said: “As a former nurse, you should know better”. I was about to say sorry when she repeated herself, adding “You should have used the ‘phone at the nurses station, then it wouldn’t have cost you anything.”
Monday was the day of the ward round. Dr Ahmed, my consultant, told me I could go home the following day after my treatment had finished. Dr Ming (my neurologist) had a chat with me and then the cuddly Dr Nandakuma came and told me I could go home on Wednesday. I told him what Dr Armed had said, but was told they were saving the bed for someone who had been waiting to be admitted for quite a while. I then explained my cunning plan! I would leave the bed a bit ruffled up and put a magazine on the pillow. Then all he would need to do was put Wednesday’s date on the discharge form. Yet again he replied “Oh all right then” (I wonder if he gives in so easily to his wife?).
I have digressed from the object of the exercise, which was to tell you of my experience of having IVIg. The product I was given was called Octagam. I was given 0.4g per kilo, per day for five days. This consisted of two bottles each day, given over about six hours. I am pleased to say I did not suffer any major side effects. My blood pressure is normally about 110 over 70. By the second day, I felt a bit light-headed. When my BP was checked it was 85 over 50. However, it was back to normal the following day. On the 3rd and 4th days I felt a little confused at times (nothing new, there, eh?). I am not sure if it was the treatment or being in hospital. By the next day (going home day) I was OK. I intend to keep a daily diary of how I feel until I see Dr Ming again in two months.
August 2004
As promised, I have kept a diary since my course of IVIg. David picked me up from the hospital and we went out for lunch. When we arrived home I sat down and the next thing I knew I woke up about 6pm. I felt a bit spaced out. There were two non-consecutive days — the second and fourth Sundays after the treatment — when I was so stiff and in pain that I could only lay on the sofa. My back was in constant spasm. Sadly, all in all the IVIg has not had any earth-shattering effect. The only noticeable difference is that I do not have the severe lower back pain when getting out of bed in the morning. I am able to function fairly normally for the first couple of hours each day. The rest of the day is the same as pre-IVIg.
The Hull Daily Mail has published another article!!! It was dreadful. I will say no more, apart from the fact that Christopher, aged 13, could have made a better job of it.
September 2004
I saw Dr Ming and he wants me to have IVIg for three days each month for five months. I went into a BUPA hospital for the treatment on the 17th. I could have gone as an out-patient each day, but as BUPA have told me they will only cover the cost of one treatment as it is a chronic condition, I decided to take full advantage of the facilities and think of it as a weekend away. Big mistake! I was so bored. I had taken in a good book, some CDs, and two cards that needed to be written and posted. The only thing I did was update my SMS address book. I could not seem to concentrate on anything.
If truth be told, those of you who know me know I can talk for England. Perhaps that is what I really missed. At home, the kettle is always on, as everyone I know seems to use it as their second home. The kids have their friends around, so when our evening meal is ready, I usually shout up the stairs “If your name is not Blows, it’s time to go home”. At weekends and evenings I count how many pairs of trainers are in the hall (that way I know if they have all gone).
Anyway, as usual I am digressing. The immunoglobulin I received on this occasion was Vigam. As I write, it is September 30 and I am stiffer and unsteady than I was before the infusion. I have decided to up the diazepam and Baclofen. What do I have to lose? This means I am now taking 7.5mg of diazepam, 15mg Baclofen and 300mg Gabapentin in the morning, with 5mg diazepam, 10mg Baclofen, 300mg Gabapentin at lunchtime and 5mg diazepam, 10mg Baclofen, 300 mg Gabapentin at 7pm (ish) plus 7.5mg diazepam and 15mg Baclofen at bedtime. One of the things I’m not happy about is my short-term memory loss — and why. I’ve heard that someone else taking a statin (cholesterol lowering drug) suffered from the same thing and, putting two and two together, I’m wondering if there is a connection. Diabetics are now routinely given statins so it would be interesting to hear if anyone else is encountering the same thing (if you can remember…).
October 2004
Another member, Angela, told her story to Woman magazine. I remember the first interview I gave. I was terrified. I really admire members who are willing to tell their story, particularly when their health and anxiety levels are worse than mine. Every time someone has the courage to do this, it is raising more awareness about SMS.
I went into Hull Royal Infirmary’s day unit for IvIg. In truth, I don’t feel it is doing a great deal of good. Having said that, it is difficult to know if it is the IVIg or the fact that I increased my diazepam and Baclofen last month. Armed with the increase in medication and three days’ worth of immunoglobulin, we flew off on a much-needed two-week holiday to Florida.
I must deviate here for a moment to tell you about the wheelchair saga. I ordered it in June and was told delivery would take about six weeks as it was made in, and had to be transported from, Switzerland. The six weeks came, but the wheelchair did not. I rang the company and was told it was on its way (does anyone believe that line any more?). Two weeks later I was told something about the ferry company being on strike. Anyway, after numerous calls, and taking a different approach with them each time, I finally rang and ‘tearfully’ said: “We are going to have to cancel our holiday if I don’t get my wheelchair within the next two weeks”. Naturally, they knew nothing of my years in amateur dramatics (let’s face it, girls, we can pull that kind of stunt with relative ease). Naturally, it worked as my wheelchair arrived the next week and I had plenty of time to get used to it before we went away. Nice one Liz — even though I say it myself.
So, back to Florida. The temperature was a constant 80ish. I was in my element as my SMS did not like the climate and decided it was fighting a losing battle and would have to wait until I got back to England before it could even think about trying to get out of jail. I walked alone each morning from our apartment to get a coffee from the resort’s restaurant, pushing my wheelchair. I went on white-knuckle rides (did you notice the plural?). Walked for what seemed like a marathon, pushing the wheelchair around the theme parks. Swam with dolphins. I even sang at a karaoke bar and, surprisingly, did not get thrown out. Ab Fab, I felt so ‘normal’.
Of course, two weeks cannot go by without anything going wrong. The first incident was when Eloise and I went snorkelling. We entered the water, which was about calf height. As we ventured further, of course, it got deeper, but I was OK with that. When I put my mouth under the water it felt strange, as one has to breathe through the mouth, rather than the nose. I got used to that quite quickly. The next step was to put my head under water. I felt a little apprehensive, but I managed it. I’ve cracked it I thought — big mistake! I swam along until I saw a big underwater drop. What went through my head? Did I think I would fall down it? The next thing I knew was I was (excuse the pun) flapping about like a fish out of water. My snorkel had come out of my mouth; I pulled my goggles half way up — letting the water in — and was in a complete panic. I could see someone’s arm, and just splashed about until I could reach it.
Fortunately, there was a lifeguard at hand. However I was in such a state I could not speak (a first for me!). Eloise was by my side all along, but I was so out of it I had not realised. Anyway, she managed to explain, and the lifeguard told her to go and get me a life jacket. She duly arrived back with one, but she did not realise that they came in different sizes and had got me one that would have fitted Ten-Ton Tess! I put it on and assumed I would now be safe — another mistake. As soon as we got to the deeper parts, I lifted up my head, only to find the jacket had more air in it than I did, and all that I could do was to turn onto my back. To end this story as quickly as possible, Eloise got me the right jacket and from then on, we had a great time.
The next incident was at Cocoa Beach. Both the kids had body-boards and were having lots of fun in the waves. So I thought anything they can do…and I went in the sea with them. The next bit of information is not to be told to, or discussed, with anyone else (or I will have to kill you). I wear dentures. I should have glued them in that day, however Eloise took my hand and led me to the water. We struggled a bit with the board at first, but then I thought the next wave is mine, only the next wave came before I was ready, and it hit me like a biggish wave would hit anyone. I was knocked over, but all I could think about was, what if my teeth fall out? So I kept my mouth closed and panicked without a sound.
Just in case you are wondering, no, I did not go in the water again! Anyway, if anything else untoward happened it can’t have been very important, as I can’t remember. Despite the two, at the time, life-threatening incidents, I am considering leaving David, the kids, the dog, the tortoise, the tropical fish and the fish outside in the pond, and emigrating to Florida. On second thoughts, who would run the support group and charity if I were to go? Oh well, I suppose I had better stay here then…
November 2004
Arrived back in the UK. Joy, oh joy! Rain, cold and thoroughly miserable. The only good thing is that at the end of the day, no matter how wonderful it is to go away, it is comforting to be back home. Anyway, I think I have rattled on for far too long about Florida, so I’ll get back to the real world.
IVIg time has come around again. I can’t really see any significant improvement in my SMS. Throughout the month I have gradually reduced my medication back to what I was taking back in September. I am keeping the heating on all the time and making sure I have plenty of warm clothes on when I go out. I am doing this in the hope that the extra warmth will have the same effect as it did when on holiday. Sadly it is not working. I think the cold and damp manage to make their way in, whatever I do.
Another member, Chris, has had his story published in the York Evening Press. Yet again, another moving story.
December 2004
I am getting stiffer and having more spasms in my lower back. As if that is not bad enough, I am wearing out the knees on my trousers, as I seem to be spending so much time getting from A to B by crawling. My dog knows I love him, but when I am on my knees he seems to think I am doing it because I want to play, and he prances around me, which makes my back spasm even more. I’ve told him I will have him put down if he continues, but he takes no notice.
There have been a few minor incidents because of the stiffness, including not being able to stand to cook. The anxiety problems are back with a vengeance, which is distressing. The stiffness and spasms are still getting worse, so I have put my medication back up to the dosage I was taking in September. It took about a week before the effects kicked in, but I am feeling much better. Of course, I have had my IVIg, but it still does not seem to be working, although having said that, I don’t seem to be hitting the vodka as often as I used to (hmmm…?)
Christmas came and went without too many problems. I enjoyed New Year’s Eve, apart from the usual embarrassing things I am told I have done when under the influence of alcohol (as if!). We went to a party at one of my brother’s. It is customary for everyone in the area to gather around the avenue fountain at midnight and drink in the New Year while watching the fireworks. I had drunk it in hours before, but still managed to do it again with everyone else at the appropriate time. So, with a drink in one hand and walker in the other I managed to get lost in the crowd. It was only when a police car, with sirens screeching arrived that David realised I was not standing next to him and came to find me. I am guessing he thought/ hoped they had come for me. Anyway, despite being a disabled dwarf (the name my family and friends call me) I managed a reasonable number of New Year kisses.
January 2005
January 1: Well, I did not have a hangover, so I can’t have drunk too much. Hang on though, two empty beds…where are the children? The mystery was solved about 11am when we got a call from my brother asking when we were coming to pick them up (oops! How do you forget the kids?). When we arrived, they were tucking into a very delicious looking brunch.
The rest of the month passed by without any major incidents. In fact, I had a really good night out with one of my brothers. We went to a club to see one of my favourite folk singers — Chris Smither. Naturally, things didn’t go smoothly, as I was navigating. You can guess the rest. At least we weren’t (too) late...
The three days of IVIg came and went much the same as before.
February 2005
Why do we have to have such miserable weather here? The wind, snow, dampness and cold… I know it makes most people feel a bit down, but when one has SMS it makes life even worse, as getting out is that much more difficult.
There was one particular Tuesday evening that presented a problem for me. Eloise goes to the youth club and Christopher to Scouts. Normally, David does the last two pick-ups. But he was in London that day. It was a cold and sleety night and I took Christopher to Scouts. When I got back home, someone had parked outside my gate (perfectly legal). However, it meant I would have that bit further to walk. That is when the anxiety started. I simply cannot understand why six yards further should make a difference, but it did. I became very stiff, but managed to get myself and my walker out of the car. That is when the problem really kicked in. I just could not walk, not even one step. I stood in the sleet, getting colder, stiffer and more anxious. Three times I got back into the car, hoping I could calm down and loosen up enough to make the journey up Everest (well, that is what it felt like to me). I soon realised I could not do it, and drove across the road and up a neighbour’s drive (leaving my walker on the pavement).
I pipped my horn, and Billy came to my rescue. I reversed my car back to my house and, would you believe it, the other car had gone. However, I was still in no fit state to walk and Billy had to help me out of the car and into the house. By this time I am not sure if I was shaking from the shock of it all or shivering because I felt so cold. I had to ring Billy again 15 minuets later to help me back to the car to go and get Eloise. It is strange how I can feel confident and relaxed enough to drive, but not to walk alone. Anyway, fortunately David was home in time to pick up Christopher at 9.30pm. This incident sounds so absolutely ridiculous, but the reality of it was quite the opposite.
I have had my last IVIg treatment, and although I would say I have not drunk as much vodka as I did pre IVIg, I don’t really feel it has done much for me. However, had I not tried it, I would never have known.
We had our committee meeting this month. We talked a lot about raising money and, of course, awareness.
March 2005
We have had a new bathroom fitted. The reason for mentioning this fact is because the builder is the first person I have come across who did not appear to acknowledge my condition. By now, readers of this diary will know I have good days and bad days, good hours and bad hours. A small example of what I mean: Walking upstairs with a cuppa for him was OK most of the time, but on the odd occasion when I was ‘stuck’, I would call to him and he would come and take the mug off me, but not ask if I needed any help to get back down! As I have said before, little things like that bring on the anxiety. It then takes time to settle down again. The up side of this “cuppa” incident was that he waited much longer before he got another one.
Changing the subject back to IVIg. I finished my course last month, and would not be due for the next one — had I being going to have it — until the end of the month, so why have I felt the need to start drinking vodka again? I seem to be becoming more reliant on it, but as I have said in the past, it does help to loosen me up. Just a note here to say a bottle lasts about two weeks, so I don’t think I am a full-blown alcoholic yet.
My blood sugars don’t help, as they are running high, which makes me stiffer. The question here is how much of SMS is in the head? Before a diagnosis was given, many others and I were told it was all in the head. But I now believe that in part (certainly the anxiety) there is some truth in it. Having said that, there are proven medical reasons for this happening. How we get round it is another thing. It is both embarrassing and annoying when the doorbell rings and I can’t get to answer it. Never mind, if it had been a friend, they would have just come in! So, I was probably saved the job of telling a double glazing salesman to go away.
There are quite a lot of group members around the East Yorkshire area so we decided to get together and have lunch. It was really nice to be able to meet people I normally only speak to on the ‘phone.
David, the kids and myself went to Sheffield to see Anastacia (one of my birthday presents). We left home early expecting to find somewhere to eat on the way. However, it was not to be, as every restaurant was full and we would have had to wait at least an hour to be served. So we ended up at the arena and had chicken and very salty chips. What a horrid birthday meal. Still, not to worry, the concert was pretty good. In parts, at least — why do some artists feel the need to turn their best-known songs into something completely different? A couple of times she ruined top tunes by giving them a jazzy sound.
April 2005
This month has seen the stiffness, spasms and anxiety getting worse. There have been so many incidents where I have got stuck. Silly things like not being able to pick up a plate from the kitchen table, walk to the dishwasher, which is simply
a turn around and a couple of steps. So to plan B: I get down on my knees (that way there is nowhere to fall) and do the job, which is why I wear out the knees on my jeans so quickly. Now this would not be a problem if I enjoyed clothes shopping — but I don’t. I wonder if after that last comment I will have a queue of men at the door wanting to swap their wives for me.
It was the big 50 for David this month. I managed to hide the fact that I was organising a dinner party for him. On the Thursday I did the food shopping with Eloise. I made leek and potato soup. On Friday I made a chocolate cake, profiteroles, and a rhubarb (from the garden) crumble and laid the table for nine. When the guests arrived I managed to stay calm (that’s a first). Admittedly, I did have some help serving the food, but I managed to cook nine fillet steaks to order and make a sauce, served with roast potatoes, peas, mushrooms, cherry tomatoes and onion rings. Why and how did I manage it when I have felt so bad earlier this month? It does not make sense! But this is the irony of SMS.
One of his presents was a day trip to Iceland (the country not the shop). We had to be at the airport by 6am. Because I had not got absolutely everything ready the night before, I was anxious and very stiff. In fact, David had to almost carry me to the car. By the time we arrived at the airport, I had calmed down. Then I realised I did not have any socks on underneath my short boots, so I went into a shop at the airport and asked if they sold pop socks — and why I needed them. Apparently, there was not a shop anywhere that sold said item. But, as ever, my luck was in, as the assistant was wearing a pair which she kindly gave me (she assured me they were clean on that morning). People can be kind. Haven’t I written that somewhere before?
We had a super day. Among other things, we swam in the Blue Lagoon, which is a volcanic pool. The only downside was because of the minerals in the water, my lack of foresight in not taking any shampoo with me and the gusty winds meant that every time the coach stopped to let us off (and there were lots of stops) I would get back on looking as if I had been plugged into an electric socket! Did you know Iceland is one of the most expensive places in which to live? Hence Eloise got a small Celtic necklace, and Christopher got a collection of Icelandic volcanic rocks. Free, of course, as I just picked them up as we walked around. Christopher’s gifts were not as useless as you may think, as one of his hobbies is collecting rocks, minerals and fossils.
Later on in the month I thought I needed some sun, so I visited my sister and spent a week in Brighton. It was a mixed week SMS-wise, some days were good and some days I had to use my walker indoors.
May 2005
I have been fighting a losing battle with my lower back, particularly first thing in the morning. The spasms and stiffness are at times breathtaking. I can usually manage to come down the stairs, but sitting for a cuppa is when it usually begins. I sit at the table, but my back wants to play around with its friend ‘stiffness’, so I cross my legs. That does not work so I sit forwards; no joy. I put my feet up on another chair, but my back does not like that either. In fact, my back does not even like me to pick up a cup of tea. But it lets me, just so it can laugh when I spill it. After about an hour of constant spasms and stiffness I fight back. When I get up and take a few steps my back knows I mean business! It will usually give in when I mobilise myself. However, it will try again later in the morning. This time I hit it with vodka! This is my weapon of mass destruction. After about 10 minutes I am mobile, and relatively comfortable again — for a short while. Because of this, I decided to see my neurologist. He told me to change my medication around, try different amounts, more of one, less of another, to see if it would help. Of course, this takes time, but I will give it a go.
David and I have been to two concerts this month, Neil Diamond, and the newly formed Queen fronted by Paul Rogers. Queen were fantastic. The performance was being recorded, so when the DVD comes out you may see moi on it (I’m the one in a wheelchair, wearing a red top).
June 2005
I have been trying to alter my medication, but nothing seems to work. To add insult to injury my blood sugars have been high. As I have said before, when my blood sugar is high — above 12 — I get stiffer. So at the moment it is heads I loose, tails I can’t win. I saw my diabetic consultant and he adjusted my insulin, so fingers crossed.
We are having some building work done on the house. We are unsure what to call it because we wanted to make a disabled-friendly entrance. We asked the architect for a porch that would be able to house my wheelchair and walker. When we got the plans back, he had called it a garden room. David refers to it as the lean to! Anyway, it will all be on the same level as the garden and hallway. So, if any of you want to come and visit, you can. Just side-stepping for a moment: Have you noticed how much extra sugar you need as all tradesmen seem to have copious amounts in their tea or coffee?
October 2005
Well the summer has been and gone, and so have the builders. I bet you are all thinking, “Great, they can all relax now because it’s all finished.” Wrong! They have left both the garage and the garden room unfinished; however, the garden room is ready to decorate. Mmmm, I thought, I can emulsion that. Wrong again. I managed the ceiling with the help of an extension pole. I used a pad to do the walls. Remember I am now only 4’10” thanks to the hyperlordosis (to those who use the metric system — sorry, but you will have to convert it yourself). Anyway, I was being sensible. I had a small pair of steps to stand on which had the paint tray on the top, and a big pair of steps for me to hold on to. I also had the ‘phone with me. Armed with a medium-ish sized vodka I was making great progress. Slow, but I was getting there. That is until I moved the small steps. I stood on the second step, put the pad in the paint tray and reached upwards. My body realised I did not have the big steps or the ‘phone next to me before my brain did. This is where the nightmare started. My back and both legs went into spasm. Please God, not again. Time went by and from time to time the spasms would ease off. I could turn my head to the left but not the right. I was holding onto the steps for dear life.
The plan was that as I could see through my study window I would be able to see if anyone walked past. About half an hour later I saw a paperboy walking past on the other side of the road. I shouted for help as loudly as I could, but he didn’t hear me. My dog did though, and came running and barking. He was obviously distressed. If only he was ‘Lassie’, he would have found a way to rescue me. Sorry Ollie, but running up and down the garden barking your head off doesn’t help. Nor does barking at me.
I was so hot and sweaty I could feel my hands sliding down the aluminium steps. There was nothing I could do about it. I had to rest my chin on the top of the steps or I would have fallen off. If that had happened I would have suffered numerous broken bones, due to the fact that I would have been totally rigid. About an hour later I was able to move my right leg down to the floor. All I could do was lie on the floor. I was exhausted. I eventually managed to crawl into the kitchen and had been there about five minutes when David walked in. He took one look at my face, which was bright red. I was dripping wet and could hardly speak. David’s response was “Are you having a hypo”? !!!!!!!!!!!!! – Why hadn’t he come home half an hour earlier?
I had an article featured in Real magazine. They took such a professional view of the subject and did not make it into a tacky freakshow. I would say it was by far the best magazine article written to date.
We all went to Majorca in the half term holiday. I decided to go exploring alone — well, not really as I did have my wheelchair for company. The terrace and gardens around the hotel grounds were a bit of a maze. It was disabled friendly, but I seemed to be going around in circles and finding myself in a place I had already walked through. However, I finally reached the beach. The only problem was the very steep (but only about three feet long) slope to the beach. Having got this far I was not going to give up at the last hurdle, so I let my wheelchair run down the ramp, and swivelled round a pole and down to my wheelchair (not as erotic as it may sound).
The first thing I saw was a small island about half a mile off shore. I sat in the wheelchair and had a ‘Shirley Valentine’ moment. Gazing at the island, I said “Hello Rock.” However, as Tom Conte did not arrive with a glass of wine, I gave up and made my way back to the slope. Fortunately, help was on hand and both my wheelchair and me were helped up. I tried to remember the disabled friendly path back, but as usual my sense of direction let me down. At least I knew I could not get too lost as I was in the hotel grounds. Believe it or not, even after a week I still kept getting lost.
The night before we left we ate in a bar which had a karaoke. OK, it’s a bit of a no no if you are ever going to see the audience again, but I wasn’t. So up I got and sang Bob Dylan’s ‘Just Like a Woman’. After the thunderous applause finally died down, David and I made a hasty exit, but not before a tearful woman thanked me for singing her favourite song (alcohol is very inexpensive there, and she was swaying a bit!).
The only problem during the holiday was when a jellyfish stung Christopher. Apparently, a few minutes later, another boy was stung quite badly. I witnessed a mass exodus from the sea, but didn’t know why. Had my island turned nasty? Do tsunamis happen in the Med? Anyway, I had my video camera with me ready to film the event. An event which had been and gone — the boy who had been stung earlier. So I switched off the camera and got back to my book.
November 2005
November has been an extremely stressful month for all of us. I don’t want to go in to details, but the upshot is that Eloise, at the age of 16, has left home.
December 2005
It has been the usual, stressful, December. Shopping — why can’t we go back to the days when buying presents for the sake of them is not the priority? On the subject of presents, why are we told what one’s children, nieces and nephews etc want? Surely it is the giving that matters? Anyway, moan of the month is over now.
Christopher’s birthday was a bit of a laugh. A group of us went to the cinema to see King Kong. I always fall asleep — perhaps the chairs are too comfy. Unbeknown to me, everyone had taken a 50p bet on how long it would take before I fell asleep. Christopher won. He said one hour. I lasted 50 minutes.
We ate out on Christmas day. I would recommend it to everyone. No shopping, cooking or washing up — fab! But I did wonder what Eloise was doing.
It was our silver wedding on December 30. David and I had arranged to spend the weekend at a four-star spa hotel. How could I have even thought it would have been straight forwards? To begin with, a journey, which should have taken 45 minutes, took over two hours, due to a sudden snowstorm. Fortunately, we were towards the back of the traffic jam and were able to turn round (unlike many vehicles which had become stuck in the drifts). We drove back to Beverley, through to Hull, on to the M62, the A1, all the back roads and arrived at the hotel nearly two and a half hours after setting off. I was booked in for a spray tanning session, only to be told it may not be such a good idea as one has to ‘cook’ for at least four hours. I didn’t want to sit in the room and waste the day, so I opted for a full body massage. I guess most of you would relish the idea, but for me it was purgatory. I could not relax. In fact, I sat on a chair and bent over the bed for the back massage. I actually felt more tense when I came out than when I went in! David had a reflexology session which he enjoyed.
We spent the rest of the day exploring the hotel and enjoying our room with its four poster bed and a view over the golf course. I even managed a swim — actually, it was more of a bit of flapping about. The only time I managed to swim, I went round in circles, resembling one of those frogs one buys for the kids to play with in the bath. The reason for this amusing sight is because my left side is weaker than my right and no matter how hard I might try, I swim crab-like.
We went down for dinner at 8.30pm — you know what’s coming, don’t you? Yes, another disappointment! I ordered salmon, David ordered steak — medium to well done. Both meals arrived. I thought they were starters. Silly me, it was nouvelle cuisine. I have a theory that such meals were invented by an anorexic French chef who, in my opinion, should be made to live on such a meagre diet for the rest of his/her life. David’s medium to well done steak was served blue (just how I like it), accompanied by six chips arranged so the two of us could have used the vegetables to play noughts and crosses. David complained about his steak, which was taken away (leaving me eating). The next one arrived, and by no stretch of the imagination could a piece of gristle be disguised as a steak, so back it went. By this time I had finished eating. Along came steak number three. This time it was neither blue nor gristle, but an inedible burnt offering. By now David’s appetite had disappeared and been replaced by utter frustration. Let me say now that if you want a perfect steak, fly to Orlando and try Charlies. I’m drooling at the thought of cutting through one of their blue fillet steaks even as I write…mmm.
OK, back to reality. The rest of the evening was fine, and so to bed. The morning arrived and I felt achy and stiff. Were the pillows uncomfortable or is it because the SMS is spreading into my neck? I suspect the latter. Breakfast was yummy — a bowl of porridge, bacon, egg, tomatoes and mushrooms. I spent the morning reading the paper and drinking coffee. David had a full body massage, which he enjoyed far more than I had the previous day, although I do think the girl carrying out the act made the experience even more enjoyable (yes! David). Our drive home took 45 minutes because, overnight, the snow had done a disappearing act. No wonder us Brits are noted for talking about the weather.
We normally party on New Year’s Eve, but it seemed nobody had the energy to organise anything this year. I should have known better. We had a call from my brother Martin and his wife Sue, inviting us over for a meal. They can always be counted on to make things better. Sue, an excellent host, cooked for eight of us.
Although — as always — I enjoyed being with them, I was stiff all evening. As midnight approached, we began to make our way to the fountain in the avenue where the fun usually begins. I had barely got out of their house when I realised I could not make it, and had to be driven the whole 300 yards! Once there, bottle in pocket, poppers in hand, awaiting the midnight bells, I found I could not let go of my walker, or David’s arm. So, while everyone else made merry, I was glued to the spot, unable to pull the poppers or drink from the bottle in my pocket.
There was one good bit though. Three well oiled young guys climbed to the top of the fountain and somersaulted off the top. I wonder how they felt later as they all landed in bushes as opposed to water. Anyway, I was driven back to my brother’s house, and David helped me out of the car. We were half way across the road when I felt as though I had been winded. I could not breathe. Although it did not last long, I was very scared. Thank heavens David was there. He managed to get me into the house and I had a rather large glass of alcohol. I had not drunk very much all evening. Perhaps I should have done! We went home as soon as the alcohol had calmed me down enough to allow me to get to the car. Bad end to a not very good year and I know I’m getting worse. Much worse.
January 2006
Not a good month for me. In fact, one of the very worst. Read on to get a flavour of the month. My blood sugars have been constantly in the teens. In the UK it should be between 4 - 10 (other countries use different measuring systems). When it is high, I am stiffer. Each day I took my insulin, but did not eat anything apart from my evening meal. I knew it was the wrong thing to do. After all, I had spent several years as a practice nurse, and part of that time was spent running a diabetic clinic.
January 16: I saw my neurologist. Between us, we decided to titre the Gabapentin until I was off it completely.
January 17: I was in one of the bedrooms painting. I felt strange, wobbly, not the usual hypo symptoms. I remember walking along the landing, then nothing more until Christopher was giving me neat Ribena. He had ‘phoned for an ambulance and alerted a neighbour. By the time the ambulance arrived I was coming round.
January 21: A deja vu moment! My hypo matched the previous one, but this time I managed to get downstairs. I don’t know how long I had been there before David found me on the kitchen floor. I must have fallen off the chair as I had bruised my head.
January 24: I got up at 6.30am as David had to leave early to catch a train for a meeting in London. I wanted to check my blood sugar before he left. About 7am I tried to get up off the kitchen chair to go to the toilet, but found I could not stand. I tried to crawl, but got as far as the door when the stiffness and spasms started. My whole body was affected. My back particularly.
It was so bad that I lost control of my bowels. I called to Christopher who came to my aid. The spasms and stiffness were so bad I asked him to lay me down, which he did, but moments later I could not breathe. It was as if I had been winded. It lasted about 20 seconds. Once I could speak, I asked him for the ‘phone (ready for him to call 999). I managed to ‘phone my brother Martin, but it was the answer phone. My next request was for the vodka. It was difficult to drink as I was shaking so much. The stiffness and spasms were still present, but not quite so severe. About a minute passed before the second bout of not being able to breathe began. Again, although it did not last long, it was a terrifying experience.
Three thoughts went through my head: Am I going to die? If this lasts long enough I will pass out and then perhaps my muscles will relax enough, and I will begin to breathe again; lastly, if there is a God, would he be so cruel as to let me die in front of my 14-year-old son?
At about 7.30am, brother Martin rang. He is a social worker and had to take a child to school, but said he could be with me by 10am. At 8.15am a friend rang. As soon as she spoke I burst into tears. “I’ll be round in 10 minutes,” she said. I had to keep Christopher at home until she arrived. Fortunately, the school was very understanding — well, the teachers were.
Christopher’s slightly built and has always been bullied, but after the shock he had encountered that day, chants like “Your mum’s a spaz” a “freak” and the rest had him in tears, which then leads to even more nastiness from the other boys. Bullies have been around since time began, and it does not help Christopher’s case as he has dyspraxia (hand/eye co-ordination problems).
Martin stayed with me all day. David ‘phoned about 2.30pm (having popped out of a board meeting). I had intended lying to him, telling him I was OK, but as soon as I heard his voice I blurted it all out. I told him I would be safe as Martin was picking up Christopher and I at 6.30pm to take us back to his house to eat and stay the night. We were half way through the meal when David walked in, having walked out of the board meeting. I hope he doesn’t get any speeding tickets as he arrived back so quickly. Although I feel completely at home in my brother’s house, there is nothing like one’s own bed, and later that evening that is where we went.
January 26: When I wake up in the morning my back and legs always want to stretch. I’m not entirely sure if it is a stretch or a spasm. However, I would be happy for it not to happen at all. But as usual, my body does what it wants, when it wants. I think my body has gone deaf — it just ignores my brain!
On this occasion I got out of bed with rather damp pyjama bottoms. No problem, as I put them in the shower and practised my grape treading on them — yes, I can still multi-task! For the guys reading this, don’t try to analyse this concept or you will become confused, unless you are not doing anything else at this particular moment in time...
Throughout the month my blood sugars have been high, despite no change in my insulin dosage. To try and combat this I have (stupidly) gone days without eating, apart from an evening meal. I put it down to an undesirable and unwanted glitch. There have been times in the past when my blood sugar will not come down, and I simply put it down to the fact that diabetes is not an exact science.
Since my incident on the 24th, I have had family or friends “volunteer” to ‘baby-sit’ me in the mornings. On the one hand, I have been extremely grateful, but on the other, it has made me feel quite bitter that I have needed this care. I am so lucky to have these caring people in my life; it makes me feel ashamed to say a part of me feels bitter. It also concerns me how much time David has had to taken off work. He may be a big-ish fish in a big-ish pond, but the powers-that-be telling him they understand and that it is OK is one thing, but one never knows how long the ‘understanding’ will actually last.
I am concerned about the amount of alcohol I have consumed this month, but whatever the reason, it seems to help more than medication. Many of the people in the support group find it helps, so I am not alone, and there must be a valid reason why it helps — and so quickly. My consultants don’t have a problem with it, but I do. I have been drinking about a bottle a week this month. Far more than previously. It helps with the spasms and stiffness, but it affects my memory and I find myself repeating things (even more than I would normally).
February 2006
I have had Lifeline installed. It is an emergency help device connected to the ‘phone. I wear a button attached to a necklace. If I need help, I press the button and am connected to someone who can either ring one of the numbers I gave, send one of their people or ring for an ambulance. It gives me a bit more confidence and the family has more peace of mind.
I saw my neurologist again. This time my back decided to put on a good show for him. It was so difficult trying to stay sitting on the chair. I have no idea why it happened. Nor do I know why I said that because most times it just starts when it wants to anyway. Most of us suffer a form of agoraphobia, but for the first time I felt claustrophobic. It was a weird feeling. I remember asking him if I could climb out of his window which would have enabled me to get to the car without having to walk back through the reception area. There were a few expletives intertwined during that request!
The two main reasons why this would not have been possible were a) The window only opens about a foot wide; b) Even if there had been no glass in it, how would I (the disabled dwarf, as my family and friends call me) have climbed out? Fortunately, a wheelchair was provided and David took me back to the car. Not surprisingly, my consultant wants me to take more diazepam…
I saw my GP, Dr Hardisty, who told me I was having a panic attack when I couldn’t breathe (see January entry).
On the bright side, my brother Martin and I saw Flossie Malavialle, a French folk singer. I have seen her a couple of times before and now have all her CDs. After the show, she wrote down the chords to a song called ’More Hills to Climb’. I wonder if I will ever be able to play it well.
When we got home, David told me the hospital had rung, and that my mother had just died. The sad thing was that we had been estranged since she left when I was five. She had lived in Spain for a number of years, and had only returned to the UK when she needed full time care. Over the last few months we had started to build a relationship.
March 2006
I have dispensed with the baby-sitting service, but would like to thank everyone involved for their patience, caring and for keeping my spirits up. However, I still need help, so I got in touch with social services. They have been to assess my needs and have decided I am to have a carer 10 hours a week, Monday to Friday. These hours can be used at my discretion. It was also decided that it would be implemented by direct payments. The advantage of doing it this way is that I can appoint a carer of my choice. If I had used the social services, I would have no knowledge of who was coming or at what time.
This may sound as if I am being ungrateful, but as a sufferer of SMS, I could not cope with not knowing who may turn up. I don’t want someone arriving with an attitude of ‘I will suffocate this poor dear with kindness’, or the opposite — someone who thinks they can tell me what I can or cannot do. The essential thing is that they have a sense of humour, and would help me to do what I want to do. For example helping me do the weekly supermarket shop, if only to spare David this onerous task on top of everything else he has to cope with.
I saw my neurologist again and asked if I can try a plasma exchange. He told me I could, but he wasn’t sure it would be of any help. So we will just have to wait and see. I feel I am going downhill too quickly and will give anything a go.
David and I went to Christopher’s meet the teacher night at school. The car park was full, but we eventually managed to find a spot, unfortunately it was at the opposite side to the entrance for the disabled. We got out of the car and the stiffness started.
Anyway, to cut a long story short (can I do that?), David and Christopher managed to get me back to the car and they went in without me. It was a cold night and I was only wearing a blouse (no silly comments please). After about 15 minutes, I was shivering and found some blankets on the back seat (we keep them there so we don’t get dog hairs weaving their way into the seats). I wrapped myself up like an Egyptian mummy, only to find I had to remove them a few minutes later as I was having a tropical moment.
It’s OK, I’m menopausal, so the ladies will know what I mean. So blankets off, windows open, only to find a few moments later it was windows closed and blankets back on again. All in all I was only alone for less than an hour, as my guys came back having seen only three teachers, but in that time my thoughts had run riot. I found out where the horn was and decided if I had a problem, I would bleep an SOS. Of course, any normal person would have opened the window and shouted for help. I also thought if I die before they got back, how could I tell them I love them. So I found a pen and some paper and wrote it down. Thank God I didn’t need to use it, and they didn’t know I had done it. If David had known I think he would have had me committed (I knew I wouldn’t be able to keep it short)!
At least I have had my music fix this month. I have seen Fiddler On The Roof, the Hollies, a Beatles tribute band and spent St Patrick’s at a Ceilidh.
April 2006
This month has passed without anything significant happening, so I will take this opportunity to tell you about my life. I was a honeymoon baby. Born in Hull in 1952. My parents were called Ron and June. My mother and maternal grandmother wanted to call me Elizabeth. Apparently, my father did not get a say in the matter, so when he went to register me he put Yvonne down first. Not because he particularly liked the name, but it did give him great satisfaction to have done it (I would say at that point, the writing was already on the wall).
Sixteen months later my first sibling, Steven, arrived. Then Jill, who sadly died before her first birthday. Martin popped out next. By the time Simon was born, the marriage was, to all intent and purposes, over. My mother left when I was five. She had met Ben, a guy to whom she had a son called Arthur. To this day none of us know if Simon and Arthur are full brothers, not that it matters to any of us. Ben used to beat my mother and Arthur, so she left. I know this makes her sound bad, but in those days there was no help available for women in abusive relationships.
We were all fostered out. Again, you have to remember there was no help for single fathers. He had to work very hard to pay for us all to be fostered. Simon stayed with the same people until he left home to marry. Steven and Martin stayed in care until my father re-married my stepmother Joyce. They then lived with them. My father and Joyce had two children Claire and David.
At the age of eight I was fostered by my maternal grandmother, who spoilt me rotten. She died when I was 23. I felt very alone, as I had never had a lot of contact with my family. I am slipping back in time a bit now to two weeks after my 16th birthday when I met a guy whom I married at 19. Big mistake! I won’t bore you with the details, only to say I tried to leave a couple of times. He gradually changed me from an out-going girl to a wimp who did not have a mind of her own. These days it would be called abuse.
I was making plans to leave when fate lent a helping hand. I met David. What a breath of fresh air. Bit by bit he helped me back to sanity. I never had to ask his ‘permission’ for anything. He always gave me his full support in anything I wanted to do. He understood my lack of confidence and helped to restore it. We married in 1980, and are still happy, despite the things life seems to throw at us on an almost weekly basis. He is honest, supportive and kind. I will stop there, because if he reads this – which he will, he will require an enormous hat! (I’ve read it — make me breakfasts at the weekend and I’ll be happy — David). When you do read this David, I have to tell you that if Johnny Depp, Richard E Grant, Rik Mayall or Hugh Laurie to name but a few were to knock on my door, well sorry, but bye! I wish my Nan had met him. She would have loved him and been so happy for me.
In 1984, my sister Claire came for Christmas; she left two and a half years later... She was here when we got the call to say our father had died. He was only 55. At that time he was living on the Castle Howard estate. Joyce, his second wife, ran the shop. The wake was held at one of the big houses there.
We noticed a couple of twenty somethings, both wearing shorts and walking around with plates full of food. It was only when they asked where the till was, we had to tell them it was not a cafй. Naturally, in the Ainley tradition we invited them to stay and help themselves to whatever they wanted. The fun bit was watching them both wobble as they rode off on their bikes (one too many glasses of wine, methinks). We could all hear our Dad laughing (metaphorically speaking, of course).
Every now and then an Ainley (my maiden name) family member crawls out of the woodwork — I should have phrased that differently, but no worries. I had met Arthur a couple of times over a two-year period. We got along well enough, but there was no real bond between us.
One day I got a call from Martin telling me Arthur had died. I was devastated, so much so that I rang my mother who was at that time living in Spain. Despite our differences, I felt she needed consoling. I also rang Arthur’s wife to console here…only to find it was a relative with the same name who had died! True to form in the Ainley family, everything has a funny/ slightly crazy outcome. When I rang, Arthur was watching a TV programme called ‘You’ve been Framed’!
I rang my mother back and told her the good news. Anyway, we had a party to celebrate the fact we had not lost our brother. We had a competition to find a name for the party. David (my husband) won with “Our Arthur who ain’t in heaven”. Well, he is a journalist, so I think he had a head start.
I could write a book on how close a family we all are, and have been for a long time, despite the chaos we endured during our early lives. A fitting testament is that we are all married or have partners and children. Career wise, I was a nurse, Steven got a degree in business studies, and for a while taught computer skills at college. He now designs software for companies, as well as being in property management.
Martin has a first class honours degree in social work. His expertise is working with abused children. When Simon was younger, he was a dancer. His claim to fame is that he was one of the dancers in Michael Jackson’s Thriller video (watch out for the short, fair-haired one whose arm falls off!). He has also done a bit of acting, too. He now works as a construction site manager. Claire is a nursery nurse. David is a chef. Last, but not least, Arthur, who deals in antiques and also runs a carpet cleaning business.
Although we are scattered around the country it would only take a ‘phone call if one of us needed anything. I could write a book about my family. I would call it The Ainley Family Versus The Adams Family. Both are as crazy as each other. That may not seem apparent from what I have just written, but I have left out a lot, as it will either offend or excite too many people and, to be honest, I’m not sure I could cope with anyone pretending to be an Ainley just to get a piece of the fun!
This diary is supposed to be about life with SMS, and yet again I have deviated and may well have put you off reading any further, but please be patient and read on.
May 2006
Well, I feel quite proud of myself this month. I visited my sister Claire in Ditchling, near Brighton. I went by coach, alone. As David waved me off, I felt a bit nervous. What would happen if I had an anxiety attack or became too stiff to move, even worse, what if I didn’t have anyone to talk to? Anyway, life was kind and all three concerns were unfounded. We had one stop for coffee, but guess what? My wheelchair was behind all the luggage, so one of the passengers helped me off the coach, which enabled me to have a cigarette (I can hear you all groaning at that).
The next stop was Victoria Station, where I had to change coaches. David had organised a porter to help me as I had my wheelchair and a suitcase, and had the nightmare of having to cross a road. However, no one turned up, so the driver took my case for me while I was going hell for leather in my wheelchair trying to keep up with him.
It was when we arrived at the other side he said he liked the little fluffy dog on the top of my case. What fluffy little dog? I asked. Yes, you’ve guessed it — it was the wrong case. He raced into a waiting room and found the guy who had taken mine. He was Japanese, so I bet he would have had a better video camera, MP3 player etc in his case than I had in mine. The downside would have been that I would not have had my medication. I still can’t decide if I got the best deal…
I had a 45-minute wait for my coach, so I decided to go and get a coffee. I left my case in the care of a member of staff. I then decided I could not get to the cafй with my big handbag, so I left that with him too. Am I naпve or a complete idiot? I returned, only to find later that Ј10 was missing out of my bag. Oh well, at least the longest part of the journey was over.
After nine hours on the road, I was met by Claire. I had a lovely week. I even managed to spread the SMS word. There was a band playing in front of a bar on the promenade. I asked Claire to leave me there. I sat alone with a bottle of beer, feeling like Billy-no-mates. After about 15 minutes a guy on the next table asked if I would like to join him and his friends (obviously a rhetorical question…). So bottle between legs, I wheeled myself over to them. It turned out two of them were actors and the other an artist, so we had a lot to chat about. They had asked what my problem was and I told them. One of them told me the best way to try and get some TV exposure. We shall see.
Ditchling was having an open gardens day. One of the gardens was Claire’s next door neighbour, a renowned artist in Brighton called Phillip Dunn. I asked him if he would donate one of his pictures to auction for the SMS charity. He said he would. So here’s hoping!
I had seen my neurologist in March and asked if I could try a plasma exchange. I got a call on my mobile on the Friday while I was in Brighton. They wanted to admit me that day. Obviously, I couldn’t make it. My return coach was booked for Sunday, and there was no way I could have wheeled myself and a suitcase up the M23, around the M25 etc, and all the way to Yorkshire. Anyway, I was having too much fun. I also had other commitments, so I was told to ‘phone them when I was free. The return journey was a long one. I asked the driver if he would slow down as we passed Lords cricket ground as I wanted a ‘photo. He did, and I took the picture. I had also asked if he would clean the window, but that was one request too many! I was shattered when David met me at the end of the journey. When we got home, all I could do was fall into bed.
The following day I began a course for diabetics called DAFNE (Dose Adjustment For Normal Eating). It was very informative, but when Thursday arrived we were told how to adjust our insulin for sick days. Maths is not my strong subject, plus sitting more or less 9-5 for four days was more than I could endure, and I had to leave the room in tears. I think everyone was surprised to see me return the following day. We all took food in on the Friday, but I was not confident enough to eat anything that contained sugar. The whole point of the course was to teach us to eat food that non-diabetics eat. We are all to keep a diary of our insulin and food intake and meet up in about a month to compare notes.
The following week I spent at home doing the usual things, and chilling out. We had an SMS committee meeting on the 27th. We talked about finding a patron, getting a logo, fundraising and raising awareness.
During the last couple of days of the month I had my hair cut plus all the bits that show waxed in preparation for my holiday in June. So, all in all it has been a busy month. We have also started to have the garden landscaped. It will be easier for me to get around. No lumps and bumps to catch me out. It will be low maintenance, too.
June 2006
For the first time I am not panicking about being ready on time. No ‘have I got this, have I got that’. I was ready and organised! Sorry, I have jumped in in the middle of the story…
June 1: I was going to the Costa del Sol for a week with my brother Martin, his wife and their son Jack, who suffers with autism. It was one of those bargain holidays one just can’t resist. You know the type I mean — the flight is booked, but one doesn’t know what the hotel will be like. I had visions of being half way up a mountain, on the 10th floor with no lift, but nothing was going to put me off the Mediterranean sun.
So, with wheelchair and walker in tow, we set off on our all-inclusive holiday to San Pedro. We were the last drop off and were told we had got the best hotel. She was right. It was all on one floor — obviously a bonus for anyone with a wheelchair. The food was OK, three swimming pools, games room, tennis courts etc. Entertainment each night and a free bar which was open from 10am until midnight, which meant I could top up my small vodka bottle each day! Of course, I spent most days playing tennis and taking part in all the activities which involved running around — I wish!
There were three things I wanted to do during the week. They were to paddle in the Med, dive into a swimming pool and go to Gibralter. All of which I achieved. The first thing I managed was to dive into the pool, although I have to admit it was a daunting thought, so I had an extra swig of vodka and did it.
Not content with that, I kept doing it. My video shows me holding on to my wheelchair, fingers crossed and just going for it. There was no stopping me, I was like a woman possessed. What onlookers may have thought I don’t know and don’t care.
The next thing on the list was Gibralter. We were so lucky, there was no queue getting in or out. I have to say I was a bit disappointed with the shopping areas. Don’t believe it when people tell you things are inexpensive because of the lack of tax. I think they have got wise to that and have simply put up the prices. We drove up the rock to see the Barbary apes. I was very nervous to start with, but as soon as they had grabbed the bag of food from Sue, they ‘knew’ we had no other food to give them and they left us alone. How do they know not to grab one’s video or empty (of food) bag? It was hilarious when we saw an ape jump into an open car and steal a tube of Pringles. It was even funnier seeing two terrified boys screaming as they jumped out of the other side…
I also managed to see some of the caves. What a beautiful sight. Of course, I couldn’t see an awful lot as I was in my wheelchair, but I did manage to see an enormous area where concerts are held. I bet they don’t need a PA system as the acoustics are spot on. If only there had been a concert while we were there — I could have listened all day.
My third objective was fulfilled after we sat by the beach eating freshly caught sardines. Martin took me to the water, where we had a paddle. The only problem was the wave neither of us saw coming. Yes, we both got soaked (why does nobody have the video running when these things happen?). However, by the time we got to the hotel we were dry.
A downside of the holiday was that I was not able to walk as much as I thought I would have been able to.
Another incident took place at the hotel. I was sitting by the pool and felt a call of nature coming on. I knew there was a loo at the other side of the pool, so off I went in my wheelchair. What I hadn’t realised was that there were two steps to get down and no rail to grab on to. The anxiety started and I became very stiff. A woman offered her help, but it took a long time to get out of the chair, down the steps and into the loo.
She waited for me to come out, but when I emerged I was on all fours, I could not stand, and even with her help, it took even longer to get me back to my chair. It was made more awkward as she didn’t speak English, and I couldn’t speak German. After thanking her (not knowing if she understood what I was saying), my first thought was to find one of the family, my mini quest for a comfort blanket. I was still shaking when I found Sue and had to put on my sunglasses to hide the tears. If you are not a sufferer of SMS, an incident like that must sound a bit pathetic. If you are a sufferer, then I know you will understand exactly what I was feeling.
On to something more pleasant. I kept bumping into Bob, the Thomas Cook rep. Actually, I think he was stalking me (if you read this Bob, I am only joking). He had injured his leg and it was quite swollen. As a former nurse, I felt it was my duty to look after him and told him to go to the chemist and get a particular type of bandage.
The following morning I got him bandaged toe to knee, and kept an eye on him all week to make sure he obeyed my instruction to keep his leg elevated. During one of our chats he asked me what my problem was — I thought ‘great, I can raise awareness in Spain’. The top and bottom of this is that he told me to write to Thomas Cook’s head office and ask if they would be willing to help the charity. It is another job on my list of ‘things to do’.
The holiday was over and we arrived at Malaga airport for our flight home. One good thing about being disabled is that one is taken to the front of most queues. The flight home was at 11pm which would have meant (taking into consideration the time difference) I would have been tucked up in bed by about 1.30am. But it was not to be. We were given various reasons why our flight was delayed by five hours. It was no fun at all sitting in the airport for hour after interminable hour. What should have been, door to door, a five-hour journey ended up taking 16 hours. Guess what I did for the weekend? Correct, sleep.
I rang the hospital (look back to May if I have lost you) on the Monday morning. The doctor I needed to speak to was not on the ward, but the nurse said she would tell him I had called. I heard nothing, so I rang again each day. Same story. I finally got hold of him on the Thursday afternoon. He told me had not received any of my messages. However, shock and horror, he told me I could be admitted that day. I asked him what time he wanted me in, and he replied “now”.
He was a real sweetheart, and was the doctor I managed to wrap around my finger when I had intravenous immunoglobulin treatment on the same ward in July 2004. I asked if I could leave it for a couple of hours and he agreed. I then pushed a bit more and asked if it would be all right if I went in after the England World Cup game that night. I think it was at that point he remembered me and said “Oh all right then”. David took me in that evening and I had routine bloods taken the following day.
From here on, remember that doctors and nurses don’t like having a nurse as a patient. When I asked what blood tests she was taking, she said “routine tests”. I had the audacity to ask what ‘routine’ tests they were. She did tell me, but was obviously not impressed when she saw me making a note of what they were. There was nothing else needed to be done before Monday and so I went home for the weekend. I had a central line put in on the Monday. It is quite a thick tube placed in the neck for the plasma exchange. I was to have six exchanges and that would mean being in hospital for just over two weeks.
The procedure took place at the Seacroft hospital in Leeds. It is a specialised day unit, dealing with blood products, which is why I had to travel back and forth. I cannot praise the staff there enough; they were wonderful. However, I did not complete the treatment and discharged myself from Hull Royal Infirmary on Monday 26th — one week after admission. I can’t go into details at the moment as my two-page email of complaints is being dealt with by the hospital authorities as I write.
Only four more days to the end of the month and I am going to spend them relaxing. Well, that was the plan. There was a knock at the door on Wednesday afternoon. It can’t be one of my ‘coffee mates’, as they just walk in. It can’t be the Betterware man, as he also walks in (I knew him years ago when I was a practice nurse and he was a medical rep). It wasn’t the window cleaners either (they get a drink too). It was a friend I hadn’t seen for a long time. She had come to ask if her mum could stay with us for a few days. Her husband had just had a serious operation, and it was a long way for her to visit each day. So we had a guest for three nights. She was good company, good fun and even better than that, she cleaned my fridge after having washed up!
We went food shopping on Saturday and she wanted to buy me a gift to say thank you. I had watched a film called Pay it Forward. The story was about a class of children who were asked how they could change the world. One boy came up with the idea of helping three people and each in turn had to do the same. A pyramid effect. So I put this idea to my new friend, and declined the offer of a gift. Of course, she now has to pay it forward. Wouldn’t it be wonderful if the idea really caught on?
July 2006
It’s been a funny old month. I am still waiting for a reply from the hospital with regard to the letter of complaints I sent.
Eloise came to stay with us for two weeks, to convalesce after an admission to hospital. During her stay, the two of us went to the Humber Bridge’s 25th anniversary. There were lots of things going on and loads of charity stalls, which made me wonder why I hadn’t thought of getting one myself. Not to be put off, I managed to enlist the help of the Humber Rescue team. The idea was they would take me (an alleged non-swimmer) out on their boat. If we didn’t collect enough money, they would leave me out there! Once I had written a few words about the event and our charity, one of the Humber Rescue guys pushed me to the alcohol /music tent and asked the DJ if he would read out my note. He told us he would have to ask his boss, but he wasn’t there (typical man). I told him, with the sweetest of smiles, that if that was the case, he could do it and his boss would be none the wiser.
At 5.45pm Eloise and I were waiting to be taken out on the river. I asked a bystander if she had a video camera. She didn’t, but her son did and he agreed to video us. We exchanged phone numbers so we could get a copy and they duly sent the contents to Tony (our web guy and treasurer). So watch this space, well not this one obviously, as it is just my diary, but when Tony has the time he will put it on the site. We managed to raise Ј40. Not a lot of money, but we had great fun doing it — especially the bit where I was assisted into the boat by two rather hunky Humber Rescue guys!
Our dog, Ollie had the canine equivalent of hay fever and had to have a tablet each day for a week. My bottle of diazepam was on the table next to his medication. Yes, you can guess what’s coming next. I gave him diazepam instead of his doggy tablet. He was fine, but he slept all afternoon! From time to time his little legs were twitching and I heard the occasional whimper. He was probably dreaming of chasing and catching rabbits, as dogs do. He is a bright dog, so I am going to put it down to an executive power nap, which he obviously needed after the energy he must have used up during his dreams.
I went to see Simply Red, and managed my second ‘Pay it Forward’. I overheard a couple asking how they could get to the centre of Hull. I’m not sure where they had come from, only that they were staying overnight. I arranged to meet them after the concert and gave them a lift. They wanted to pay me, but I declined their offer and explained the ‘Pay it Forward’ concept. They seemed enchanted with the idea. Let’s hope they, too, pay it forward.
August 2006
I have now got our fund raising event underway. The hall and the band are booked for October 14th. I have to say a big thank you to Martin Pierson, a friend without whose help I shudder to think how I would have managed. We are incorporating an auction into the evening, but I am finding the most difficult and time-consuming part is getting items donated. However, whatever happens, it should be a good evening.
I went to see the singer Benny Gallagher and asked for his help with the forthcoming event, and for ideas about getting a patron. He seemed to listen with interest, but unfortunately I have heard nothing. It’s such a shame because he is the only person I can talk to who knows and works with so many big people in the music industry. On the other hand, I am not very good at face to face begging — I get tongue-tied and sound like a complete idiot. Actually, that is a complete lie. I think I could sell ice to Eskimos if I put my mind to it. I seem to founder when I plan what I am going to say. I think I have much more cheek and get a much better result when I don’t have time to prepare and just let it happen. However, the music, as usual was good!
I went to Spain (again) for a week. With 18 family members! We had gone to scatter my mother’s ashes in the Med, close to where she had lived for many years. Christopher went with me (David had already booked the following week off work). I only decided to go five days before departure because of pressure from one of my brothers. It was a horrid week. We stayed with one of my brothers, his wife and their daughter. I spent a lot of the time stiff and anxious, and two embarrassing episodes of crying over something but I don’t know what. For some reason, I just felt so vulnerable.
I interviewed a young woman for the job as my carer. She lasted one day, as it seemed her diary was always full when trying to organise days and times when I would need her help. I now have the job of interviewing all over again, which I have done. I have employed two women who are both hard working and good fun. They help me with shopping and housework. In fact, they are both willing to ‘work’ with me enabling me to do things I would not feel comfortable doing if I were alone in the house.
September 2006
I am proving the point I made last month about getting my way when I have not had time to prepare. I was at the folk club (the same one as last month, my local). I went to see Billy Mitchell and Bob Fox. Off I went into the dressing room to have a chat and although they were both eating, they asked me to pull up a chair and join them. They offered me some of their food. Naturally I declined, as one has to watch one’s figure! Or was it the fact that I was still stuffed from my evening meal?
They were great fun and so witty. As a general rule, the further north one goes, the more fun the people are. I think I have made a similar comment before, so my apologies to the southerners who may be reading this. The only problem was that they talk more than I do, which meant I looked like a goldfish — mouth open, mouth closed, and what made things worse was they could see my dilemma, and seemed to find it very amusing. They both took an interest in my talk about SMS and each of them gave me a CD for the fund raising event next month.
We had a visit from one of the group members and her husband who had been visiting friends a little further north and made the time to come and see us. Thankfully it was a sunny day and we were able to sit in the garden with a glass of vino.
Our treasurer (and web guy), Tony, tied the knot on September 16 with the lovely Tanya. We were invited to the reception which was held at a place called Honeysuckle Farm. It’s a working/petting zoo. Typical of Tony. It would not have entered his head to use a ‘normal’ venue. It was good fun as the children played in the hay and were entertained by the animals. I couldn’t resist the animals either, until a kid (baby goat, not a small child) bit my finger. In fairness to the little beast it probably thought I had some food in my hand. The adults listened to Tony and his band, which included Tony’s wife’s dad. He’s a vicar and barely half an hour earlier was in full vicar dress, giving the happy couple’s blessing.
I have been doing a lot of thinking this month and have come to realise that my visit to Spain last month proved just how totally reliant I am on other people. I blamed one of my brothers for so many things while we were there. Yes, perhaps at times he could have shown a little more consideration, but if someone does not know the extent of what an SMS sufferer feels or needs, how do they know what to do for the best? It has made me realise I cannot go away unless it is with someone who understands my disability.
October 2006
The fund raising day has arrived! I have spent the last two months writing or ‘phoning for items to auction, and worrying there would not be enough. How wrong can one be? The day before the event I received an email with 14 more auction items. As fantastic as that seems, it put us in an awkward position. David spent almost all day making lists of the most appropriate items to auction as we only had half an hour allotted. Christopher fell hook, line and sinker for one of the girls in the support band. Typical. We then had the auction. David did a really good job as the auctioneer. He also managed to grab us a few extra minutes, which meant he was able to ‘move’ more items.
The main band, Kinked, (a tribute band to the Kinks) were next on stage. We have seen them before and once again they did not disappoint. In the interval we held the raffle. I think the evening ended about midnight. Apart from the fact that it was a really good night’s entertainment, we made a fantastic Ј950. We still have a number of items left, but I really need to recover from this one before planning the next.
David, Christopher and I went to Ibiza for half term. It was a nice hotel, super food, good evening entertainment and had easy access to the beach. After the first day we hardly saw anything of Christopher as he spent most of his time in the pool with new-found friends, including a good smattering of young ladies, one of whom he called “hot girl” who had a fantastic figure — especially for someone only 13 years old!
I wanted to do some snorkelling and had to walk (does pushing one’s wheelchair count as walking?) into the closest shopping area to buy the equipment. I wouldn’t mind, but we left two lots of snorkelling gear at home. Anyway, we got back to the hotel and headed straight for the beach. I held on to Christopher until it was deep enough for me to stand alone. Off I went and saw some beautiful fish. I went again the next day. Christopher was already in the water, so I hung on to David’s arm until we got to the water’s edge. He was videoing me as I crawled into the water. I didn’t give a second thought to the fact that the water was choppy and that the waves may pose a problem. I was OK with the first few, but the further in I got, I realised how anxious I was getting. The anxiety gave way to panic, and although David was filming me, he couldn’t see my distress through the eyepiece. I think he thought I was waving at him. It was only when a woman came to my rescue that David realised something was wrong and stopped filming (shame, really, as we could have sent it off to ‘You’ve been Framed’).
At this point I have to say David will not even paddle in the sea as he believes there is a shark out there with his name on it. It stems from watching the film ‘Jaws’. We all know he is not a child, and I have sat him down and explained the shark in jaws was made out of rubber and honestly and truly was not real, but he still doesn’t believe me (big woos). Anyway, I am now convinced the Med is determined to get me at some point. It seems every time I put my foot in, it thinks “Here comes Liz, what shall I try this time?”
David and I went to try out the archery. Although a strap was put around my forearm, I still managed to get an enormous bruise most of the way down my left arm. I didn’t look at the scores, but I knew I hadn’t done very well. Having said that, guess who won the rifle shooting! I should have got extra points, as I was sitting in my wheelchair. The guy who won the men’s competition only scored seven points more than me. The irony is that he is part of the Metropolitan Police firearms team! Anyway, I had to win to keep up with David, who won the event the day before (although he didn’t score as many points as me…).
As those who have patiently read this diary will have come to realise, I am either brave or stupid. To be honest I don’t really know which it is. As I said earlier, the evening entertainment was good. We saw there was a karaoke night on the Thursday — I was happy, but David and Christopher both groaned as they knew I would be signing up for it. I looked through the list of songs and decided to try ‘You’ve got a Friend’ (James Taylor). However, the machine couldn’t bring it up. So I tried ‘That don’t Impress me Much’ (Shania Twain). The problem was that the machine only had one line at a time on the screen and unless you really know all the words you make a complete idiot of yourself — as I did. I did a disappearing act for a while, but not one to be beaten, came back later and sang (sort of…) ‘There’s a Kind of Hush’ (Herman’s Hermits) to rapturous (and sympathetic?) applause.
One of the things on my list of ‘things to do while on holiday’ is to dive into the pool. David was nowhere to be seen (probably having a siesta somewhere). I saw Christopher and handed him the camcorder. My only problem was that I had nothing to hold on to. The handrail by the steps was too low, so I pulled my wheelchair up the ledge next to the pool and after the struggle, discovered that would not work either. As you know, I am not backwards in coming forwards, particularly when determination is in the forefront of my mind. So with my usual cheek, I waited for the first good-looking guy to wander by and asked if he spoke English, which he did. I told him he was in sight of a great opportunity — to hold on to me. I needed him to stand behind me with his hands on my waist (!) while I perched on the edge of the pool. Surprisingly, he said OK. So, with two strong hands clutching me from behind and holding me steady, I counted down “Three…two…one…DIVE!” and I plunged into the pool. Perhaps not my most elegant entry, but I did it. And my new friend seemed none the worse for the encounter with a brazen stiff woman.
On that note, I will leave October with a lot of happy memories, although I must admit (even to myself) that this year has seen my condition get worse and worse. I am so much more reliant on my walker, my wheelchair and people to help me do the things I used to be able to do reasonably well (relatively speaking) just a year ago. What does the future hold? It just doesn’t seem worth thinking about. But at the same time it’s hard not to… and that’s very frightening.
November 2006
Good grief, November already, and it’s still relatively warm. If this is global warming, I’m all for it! Just going back to last month. We got back from our holiday on the last weekend of the month. Two days later I was telling someone that I never suffer with coughs or colds. Two days after that comment I felt as if my throat was made of sandpaper. The next day the cough started. About a week later, and two or three sleepless nights — not me, David, because of my coughing — he insisted I went to see the GP. Anyway it turned out I had bronchitis. So a 10-day course of antibiotics, and blood sugars up and down for a couple of weeks were not my idea of fun. It also meant the auction, which was provisionally booked for November, had to be called off.
However, we did manage to hold our committee meeting, which is held at my house. Naturally the month could not pass without something happening which involved me doing something I shouldn’t. It was a couple of days before the committee meeting. We had had a new door fitted between the garden room and the hall, and I desperately wanted to finish the paintwork before Saturday. Despite my promise not to use stepladders when alone in the house, I conveniently ‘forgot’. Of course, the inevitable happened — I got stuck on the second step (I truly believe the Mediterranean and the second step on my aluminium steps are out to get me). I had been happily sanding the top of the doorframe when it happened. I found myself well and truly stuck. Fortunately my back didn’t spasm and I was not rigid. It was my left leg that would not do as it was told. I had my right hand on the steps and decided to hold onto the top of the door with my left. I hopped the steps to the right, hoping I would be able to grab hold of a door handle, only to find I could not let go of the top of the door. I made a few attempts to get back to terra firma, all of which failed.
To understand what I have just described, you had to be there. I decided to press the lifeline buzzer that was round my neck — only to find they could not hear me as the Bob Dylan CD I was listening to was a bit loud, and one of the speakers was next to the lifeline box. In all I pressed the buzzer three times. A few minutes’ later help arrived in the shape of a neighbour, Billy. He arrived in pyjamas, one sandal and a pair of crutches. Apparently he had been in bed as he had had an operation on his foot the day before. When we saw each other all we could do was laugh, as I was stuck in the doorway and he could not physically help because of the crutches. However, the mere fact that there was human contact was enough for me to loosen up enough to get to the floor.
We had just got in to the kitchen when the ambulance arrived and in came two paramedics. They looked at the two of us. I was on the floor, holding onto the table leg, rather pale and shaky, while Billy was standing in the afore-mentioned state. They asked which one of us they had come to attend. Yet again Billy and I laughed. Once established it was me, they asked if I wanted to be taken to hospital. Sorry, but I can’t write what I actually said to the ambulance crew, as the hospital in question was the one I had discharged myself from in July. Speaking of which, I didn’t tell you I eventually got a reply to my two-page email of complaints. I won’t bore you with the contents as they addressed some points, ignored others. One point I found both sad and amusing was being told that all the nurses were attending a programme of ‘customer care and communication skills’ The mind boggles! I was going to take it further, but this SMS ‘job’ seemed to take priority.
When I was nursing, we had an auto-valet where we changed into our uniform. We trained at the school of nursing, which was coupled with working on the wards. The risk of cross infection was drummed into us. However, nurses are now trained at a university. When nurses arrive and depart the hospital, they are in uniform. Is it just me, or does anyone else wonder if that could be a contributory factor to the rise in MRSA, c-dif, etc?
December 2006
It must seem so strange having read November’s entry to begin this one by saying how immobile I have been. I have been using my walker around the house, and sometimes that has not been enough. I have found myself holding onto the walker, and getting around on my knees. The pain in my lower back has, at times prevented me from doing the simplest things like emptying the dishwasher.
When I am in that state I get so hot — or perhaps they are menopausal ‘tropical moments’? Anyway, whichever, I am too stiff to remove an item of clothing to help me cool down. Yet again, the only thing that seems to help is a shot of vodka. Give it 10 minuets and I start to loosen up.
I have decided I don’t like December. It’s too busy. Fortunately I bought a lot of items from ‘Next’ in last year’s sale, which meant there was not a lot of Christmas present shopping to do.
We and a few other family members spent Christmas day at my brother’s house. It was a lovely day, but I felt cheated knowing I could not help with the clearing up. The best I could manage was to pass food to others at the dinner table. Although on the up side I saw David hoovering up at about 10 30pm. Sadly, I didn’t have my camera handy!
Our wedding anniversary between Christmas and New Year came and went (uneventfully) and, for the first time ever, we did nothing on New Year’s Eve. I felt most sorry for Christopher. He loves partying and missed out big time. We did have celebratory bubbly and poppers at midnight, but it’s not what we are used to. So one of my resolutions next month will be to make sure we will party this time, next year. One last thing — I can’t believe I have not been to a concert for two months. I am getting withdrawal symptoms!
January 2007
If there is anyone reading this who has an illness, which is neither progressive nor painful, I would be willing to do a swap. Any offers? No, I didn’t think so. For quite a long time now I have been waking up at stupid O’clock in the morning. I get up, do a blood sugar, get out the daily tablets, have my insulin, and put on the TV. I suppose one good thing about it is that I can watch the programmes I recorded the night before which the guys don’t want to see. I have spoken to my GP and asked for, and he agreed, for me to try Gabapentin again.
I have been taking Gabapentin since the 8th, and have gradually increased to 300mg three times a day. My back is a bit better, and not quite so painful. The downside is that I am in a state of narcolepsy most of the time. I have also had bronchitis again, so I was not sure if the antibiotics plus the 900mg of Gabapentin were to blame. However, having finished the antibiotics, I was still falling asleep at the drop of a hat. It was a potentially dangerous situation as it meant I could be asleep and not take my medication or check my blood sugar. I am now taking 300mg in the morning and the same before I go to bed. I can cope with the dosage, and my back is marginally better, but not so good that I would want to shout about it from the hilltops. All in all, it has been a fairly boring and miserable month.
February 2007
I have been to a concert — the first in three months! Hi-hip hoorah! I saw Chris Smither, one of the best folk musicians around. I don’t know why I write about these things, as this is meant to be a diary about my life with SMS. Having said that, I can’t function very well without a regular music fix.
So on to SMS and me. I told you I now have carers. There have been a couple of changes, but I now have two fab women. They both prefer to be called PAs (Personal Assistants). To be honest, I quite like it. It doesn’t automatically make one think I am disabled. In fact, one may think I am a high flyer — unless I happen to mention it when I am in my wheelchair. Having said that, I could still be a high flyer in a wheelchair…
Sally comes Mondays and we do the weekly supermarket shop. Carol comes to order. What I mean is, she is very flexible. She is into DIY, which is great as we get up to all sorts of things. David comes home from work and his challenge is to look around the house to see what we have done. If he doesn’t spot anything, the forfeit is he doesn’t get fed (only joking). Anyway, February has been and gone without any great catastrophes.
March 2007
I have had another stopping breathing episode. Thank heaven David was home. It was almost the same scenario as the last time (January 2006). I had got up at silly o’clock in the morning again (something I seem to keep doing). I was sitting in the living room, watching the TV with a cup of tea in hand. A call of nature arrived, and I tried to stand up and make my way to the loo. However, my body was having none of it. Perhaps it didn’t realise I had put the programme on pause and would be able to carry on where I had left off. I managed, with the aid of my three-wheeled walker to get as far as the hall. David was coming down the stairs at the same time as I had to get down on my knees.
The panic set in and my breathing stopped. David grabbed my hand as I held on to a door handle with the other one. He was asking me what was wrong. And what he could do to help. All I could do was point to my mouth. He stayed very calm and tried to reassure me I would be OK. I suppose the time like that was actually quite short, but to me it seemed to go on forever. I’m not sure how long the bruises to David’s hand were visible, but he didn’t complain.
I am now getting a bit phobic when in the hallway. Because I know the reason, I walk in there when I need the loo, and walk out again. I give myself a few moments, and almost let it be my decision when I go. Does that make any sense to you? Sorry if you are left rather confused, but I know what I mean. If you really have a problem with it, then instead of doing a crossword, try and work it out.
I have now reached my mid-fifties. Included in my list of presents were a set of chisels and an electric sander. To anyone reading this who gave me flowers or ‘smellys’ — thank you, but the chisels and sander were my favourite gifts. On my better days I will get so much pleasure using them.
I had to have the electrician in one day. He turned everything off at the mains and I got a call from the help-line people asking if I was OK! I explained what was happening, and got a rather curt reply. I told the electrician they are always abrupt (but not in those exact words) only to hear the person from the life-line say “So you are OK then?” I thought they had hung up! On a scale of one to 10, how embarrassed do you think I felt?
April 2007
I have been so busy, it is now June and I have to rely on my note pad and the calendar to remind me of things that have happened. There is no point in trying to remember as my memory is only slightly better than a goldfish. On the subject of goldfish, all of mine are called Bob. – Well, have you ever watched them? They swim about and all they appear to say is “Bob”.
I had an e-mail from an organisation called Orphanet. They keep a database of rare conditions throughout Europe. Did you know there is only one other support group in Europe? Probably not. They are in Germany and if anyone is interested in looking at their site, the address is www.stiff-man.de I have been in touch with the German support group and hope to work together if the language barrier can be overcome. As I said earlier, my memory is severely lacking and I can’t think of anything else to write, but my mouth is still working on overdrive.
May 2007
I have been in a magazine called Top Sante this month. Just the usual stuff to help raise awareness. The only problem is that don’t seem to want to send back my ‘photograph. It was a professional picture, and my dog (Ollie) and I looked reasonably normal! Perhaps that’s why they didn’t use it.
More importantly, at long last the article I wrote somewhere back in the stone age has at last been published in the Journal of Diabetes Nursing. Being interviewed or writing for a magazine is one thing, but a medical journal is in another league. 2, 500 words and they needed acknowledgements for everything I had written. I just wish I had realised before I started to write it. All the information I had purloined had been neatly put back in my filling cabinet. Or if you want the truth — it had all got’ lost’ along with everything else in my study. I spent a full day trying to sort things out. I found lots of things I thought had been thrown out — obviously by anyone other than me. I even found an empty packet of cigarettes filed under ‘c’ (I must have been having a hypo when I did that).
In the past I have done some crazy things during a hypo. Once, when I was agency nursing, I worked nights at a factory. By about 1am I would be fast asleep and would leave the door open and any injured member of staff would come in and wake me up. I always set my alarm clock for 5am, which gave me an hour to refresh myself before the day staff came on.
One particular night I must have had a hypo, but I must have been coming out of it when the security guard came in for a cuppa. Instead of which I had poured him a glass of what I thought was Lucozade — only it was Savlon. He knew I was diabetic, and that there was something wrong, so he locked up and drove me home. The following night I looked for my alarm clock, but it was nowhere to be found. A couple of weeks later I decided to tidy the filing cabinets, and guess where I found it? Yep! filed under ‘c’. (presumably ‘c’ for clock!).
Another incident was when I woke up during the night (at home this time). For some strange reason I thought the bed — which I had made at a woodwork class — was going to break and I would fall through it, so I got up. The next thing I knew was when David brought me in from the garden. It was about 4am. I was wearing my dressing gown, one of my slippers and one of David’s. I think I woke half the neighourhood up as I was chanting “Arthur C Clark” over and over. David asked me what I was doing, and my reply was “I’m waiting for the paper boy.”
And there’s more… I got up one morning and decided I wanted a slice of toast, but instead of putting the bread in the toaster, I put it in the kettle. Once the kettle had boiled, I put my hand in to get my toast. Yes, I scalded my hand, but I didn’t feel any pain. I just cried because my toast was soggy! David yet again to the rescue. What would I do without him?
My back is giving me more problems. If I sit for any length of time my back is so stiff I can’t walk. Mornings are generally the worst time for any SMS sufferer, but I find that late evening is almost as bad. I won’t go to bed after David because I am afraid I will not be able to make the journey from the sofa, through the dreaded hallway, and up the stairs.
On a happier note, We have been to a wedding this month. The reception was held at Hull University. The only problem was that to get to the area meant stairs, stairs and more stairs. I thought disabled access was compulsory in most places in the UK. Actually it was, but it meant going all the way round the building. After pushing myself in my wheelchair, I felt my pecks were comparable with Arnold Swa (I don’t know how to spell his surname, but you know who I mean). Before anyone wonders why David didn’t help, I will not let anyone push me, unless it is absolutely necessary. Anyway, it brought my blood sugar down and I was able to eat a lot of the yummy food. Three glasses of champagne later and I was giving children I had never seen before, rides in my wheelchair, which served two purposes — I was the kids’ favourite adult, and their parents had a bit of respite. I even managed a few minutes on the bouncy castle.
David and I went to see the Who. It was a great event. Ringo Starr’s son, Zak played drums. Good, but not as good as the former Who drummer, Keith Moon. It has been quite an expensive month motoring-wise, as I managed to get a speeding ticket — I was only doing five miles an hour over the limit. Anyway, I had to pay Ј60 and got three points on my licence. To top that off, I managed to get two parking tickets (Ј30 each). David was not a happy chappy when he saw the credit card statement at the end of the month. Obviously I had ‘forgotten’ to tell him about these incidents and I hadn’t realised he checks his statements. Whoops! Anyway, after he cooled down, I explained that a husband’s role in a marriage is to open and pay all bills, even if they are addressed to me — then I made a hasty exit.
June 2007
Where do I begin? Well I suppose the beginning of the month would be the most logical. We had our charity committee meeting, which went well. The only problem was one of the members, Pam, well not Pam herself, but her car. She had driven up from London and during the journey she was having problems with her brakes. We had to call out the AA (no, not alcoholics anonymous – of course that would have been for me!!). When Les, the AA man arrived, he told Pam she would have to be towed back. Once he had had a coffee and got everything in place, the kind soul that I am asked if he would like some of the biscuits etc I had baked. “Yes please” was the reply. So all nicely wrapped up, plus a small bottle of squash for the journey, I handed them over, and said “that will be £10”. I don’t know if it was shock or if I had inadvertently hypnotised him, but he put his hand in his pocket and handed me a nice crisp £10 note (just for the record, the money is now in the SMS bank account, not my personal account).
The following week the window cleaners were, as per usual, having a coffee here and I recounted the AA man story. They coughed up £3! A little on the stingy side, but £3 is better than nothing. Who will be my next target I wonder?
The first week went well. Actually, the second week was OK too. I had an operation to correct droopy eye- lids. The medical name for the op is a blephroplasty. I spent the day before stressing about it, and although I had to be there at 6.30am I felt very calm (I didn’t have any stress left in me, after yesterday). The op was successful, and I was home by 2pm.
The following Wednesday I went to the pain clinic and endured nine intramuscular injections in my lumbar region with a substance called Bupivacaine hydrochloride. The following day I was in more pain than I had been before the injections. My back was in spasm most of the afternoon. I was rigid and I don’t know why, but I could not stop crying. I had been trying to answer some e-mails during the afternoon, and found I could not get out of the chair to stand. I didn’t want to ‘phone David. I didn’t want him to know, as he would worry and feel he would have to come home (again). I really believed I would feel better by the time he got home from work in the evening.
I was in such a state, I had to have some help, and I rang one of my brothers — Steve. He came straight over and rescued me out of the swivel chair, on which I had somehow managed to push myself backwards into the kitchen. He stayed with me until David came home from work. I was still a bit shaky. I could not cook (I don’t enjoy cooking the usual family meals anyway, so a take-away seemed a fitting exchange for the day I had had).
We had been invited to a party on the Friday night, but I just could not bear the thought of getting showered and changed, as my back was still too stiff. David and Chris took quite a bit of persuading to go without me. I spent the evening on the sofa with every appliance known to man (or SMS sufferers) close to hand.
Saturday was not too bad during the day. We ate out in the evening and I spent what was left of the evening watching TV. When I decided to go to bed at 11.45, I found it difficult getting off the sofa. I managed to get into the hallway, and got hold of my walker. I was about to go into the study to give David a kiss goodnight, when I found I could not move. I tried to stay as calm as possible, and told David I was stuck. It was the beginning of another panic attack. As David held me, he told me to breathe slowly while counting down from 10. We both felt the priority was to get me into bed.
The journey up 13 steps took almost an hour. I would manage two steps on my bottom, then start to panic, calm down, turn round, panic again. On and on it went. When I finally reached the top of the stairs, I could not turn right to go toward the bedroom. With a lot of help, I managed to pull myself around to the left, and held on to the newel post. I also had my other arm through the spindles, holding on as tightly as I could. More panic attacks followed. With each one I could feel my breath stopping. It was only because David was there to calm and reassure me that I didn’t actually stop breathing. I had been sitting on my legs, so of course I got pins and needles.
Eventually I managed to kneel up, let go of the newel post, and with that hand, hold on to David. The only thing I could think of that may help me was, of course, the vodka! However, as David began to move, the panic started again. He had to resort to shouting to Chris, who was fast asleep. After about five attempts to wake him, he appeared, bleary-eyed and didn’t seem to have a clue what was happening.
As you will know by now, there is almost always an amusing aspect to my SMS episodes, so here goes. David asked Chris to get the vodka. We both wondered why he was heading for our bedroom, and had to tell him again why we had got him out of bed. Still half asleep, he went downstairs and into the loo. After he had played the extended version of Handel’s water music, he then went into the kitchen. We could hear him moving around for what seemed to be ages.
David shouted asking what he was doing. He said he could not find my vodka glass. “Just bring the bottle” David replied. Chris came up the stairs with the pasta jar!!! After a few ‘wake up’ words, Chris brought the vodka, plus a pint glass — good thinking!! (end of ‘amusing aspect’). I don’t know how much I drank, except to say it helped, as I was able to let go of David, while he got a chair for me.
By this time all I wanted for someone to give me an injection that would knock me out. David rang the doctor. Surprisingly, he had heard of SMS. He said the only thing he could do was to send an ambulance. As soon as I heard those words, I yelled a few obscenities about being ‘man-handled’, and ending up in the dreaded Hull Royal Infirmary. I remember David asking the doctor “Did you hear that?” He obviously did, as by the short and quiet exchange of laughter I realized the doctor sympathized with my predicament. Therefore, the only advice he could give was to tell me to breathe into a brown paper bag. I do suffer with anxiety, and I think that makes me more fearful of, well everything.
For me, the anxiety, which leads to real fear, is the worst aspect of SMS. I can usually cope with the pain of the stiffness and spasms. It was 2.15am before I was ‘safely’ tucked up in bed, and all I could think about was where can I get brown paper bags, how many will I need etc. Thank heavens Frankie Vallie’s song “Oh what a night” referred to a happier event.
The following day I received some cards asking me to have some blood tests taken. They were attached to a plastic bag, which had a sticky bit on it. I looked at it and thought of the doctor’s advice about breathing into a brown paper bag. Without delay I stripped the cards from the plastic bag and placed a folded up paper bag in it, and stuck it on the mirror in the hallway. I don’t care that the first thing one sees as they walk in the house is a bag with ‘diagnostic specimen’ written in big black letters. Although it is a talking point.
Another day I began to stiffen up and decided to get my wheelchair for ‘just in case’. As it happened it was a good idea as the stiffness progressed to the point where I could not walk. After completing what I was doing in the kitchen, I decided to explore the ground floor to see exactly how I could get from one room to another in a wheelchair (I lead such an exciting life!).
On the 19th I was in a bit of a state — stiffness and spasms. I was on the computer and then found myself writing the following on a piece of paper (please bear with me as I can hardly read it as the writing is so spidery): ‘On computer. Then couldn’t walk. Swilled down a gabapentin with two vodkas — like I could give a sh*t what it may be doing to me. I can’t stand — never mind walk’.
Firstly, my apologies for the language, but despite the state I was in I still managed to get the grammar correct! (That’s what being married to a journalist does to you). I think I can say it has been the worst month ever.
July 2007
Well, thank goodness — this month has been a vast improvement after the events of June. I don’t have much to talk about. Blimey, that must be a first for me!
It was Eloise’s 18th birthday. She doesn’t live at home now, but I made her a cake, and we all shared a bottle of champagne while she opened her presents. Of course, it was party time in the evening, as she is now legally able to consume alcohol. Methinks she may have had a hangover the following morning.
Chris’s school put on a showcase, which was fab. So much better than the typical school play. We all go to school events, but let’s be honest, we only go to see our own kids — who (in our eyes) are the stars of the evening.
It is his GCSE year, and he spent a week at a riding school for his work experience. He wants to do equine studies at college when he leaves school.
We all went to one of my brother’s for his birthday bash. A lovely lazy BBQ afternoon, and a fairly rowdy evening. Fortunately, it was a sunny day. After all the flooding we have had this year it was nice to see the sun.
With regard to the SMS, it has not been too bad. I read somewhere that a neurologist had spoken about this condition and said: “SMS is rather unique among neurological diagnoses because of its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable”. How right he was. How can one be relatively OK one moment/hour/day, and then in the blink of an eye be in dire straits?
As closing point to this month, I must tell you about my new hobby, and how sad it is that I am doing it. I have bought a washing line, and I am now washing everything in sight, just so I can hang it out in the garden to dry. Of course if it is windy — which is the best type of weather for drying washing — I can’t stand to hang it out. To be honest, it is a sight to behold as I drag the wash basket in one hand, while holding on to my walker with the other. Once I get to the line the fun starts, as I have to hold on to my walker or the washing line as I peg out the clothes (it doesn’t take much to make me happy!).
August 2007
Like many people we had hoped for a cheap late deal holiday, and like many people were disappointed to find there were none available. I believe it was due to all the flooding we have had. Those affected must have booked early. How selfish of them to deprive us of an affordable holiday!
We were going with my brother Martin and his family. We all tried to find a holiday mainly via the net, and in the end I booked an apartment in Salou, Spain, through a travel agent. I felt so smug as I had never done it before. I think this is where ‘Pride commeth before a fall’ enters the equation.
I had absolutely everything ready and packed the night before. Up at 3am. Checked the cases again, checked I had all my medication again, checked the passports were in my bag — again. By which time I had made such a fuss that David and Chris were getting a bit fed-up. OK, time to go. “Just a minute, I need to check I have put my nail polish remover in the bag”. At this point steam was coming out of their ears, so I just said rather quietly: “ It’s OK, if I have left it at home I can get some when we get there”. 4.30am, and we were off.
Of course, we got lost getting to the airport. I don’t know what Martin thought was going on when we went around the roundabout three times before finally deciding which was the correct turn off.
The flight was fine. The car hire was fine. The apartment was a five out of 10. We spent the first day unpacking and checking out the local area. It was at this point I began to feel a bit disappointed. It was not as clean as we would have expected. On the second day the air-con packed up. We reported it, along with the electrical socket which was hanging off the wall — complete with bare wires. It was all fixed the same day, but the following day the air-con stopped working again. Despite asking, no-one came, and we spent the rest of the week sweltering in bed at night.
We found some good restaurants — so at least we didn’t starve. We were in a fish restaurant on the beach one night when there was an amazing thunderstorm. Those of us who were sitting outside were whisked inside. The only problem was that the roof was leaking. Fortunately, the customers helped out by putting champagne buckets under the falling water. We were packed together like sardines, so what a better opportunity for me to talk to people and hand out my SMS business cards? Obviously only to those were interested.
Opposite our apartment was an Irish bar. They had karaoki every night. We had all been in there, but Chris and I went every night. Neither of us could win the X-factor, but who cares? I sang everything from Dylan to the Commitments. Chris sang Nirvana songs, plus songs by artists I have never heard of. Our only problem was when a rather disgruntled David came in at 2.30am and dragged us back to the apartment. I am sure he would not have bothered if we had taken a key with us (whoops!).
We spent a few days visiting other areas, and a fab day in Barcelona. Our flight home meant an early start on Saturday morning. About 2am, Chris and I were joined in our usual haunt by the rest of the family. Apparently there had been a fire in the cafй, which was attached to the apartments. The smoke was flooding through the air-con system. Although we were offered alternative accommodation, it was of no use to us, as we only had a few hours before we were due to leave. When the acrid smoke had cleared, we were able to go back. There was no point in trying to get any sleep, so two cups of coffee later we left.
I say it each time we go abroad, but yet again, my SMS symptoms were not as bad as they are at home. I walked a lot, albeit pushing my wheelchair. The only real problem I had was one morning when my back was in spasm. It accelerated very quickly. Before I could do anything to help myself, I found I could not breathe. Fortunately, my handbag was close enough for me to grab, and get the paper bag, which I always keep in there. Both David and Martin were on hand to help. Not a pretty sight, almost ‘fighting’ to keep me upright, while I was suffering back spasms and unable to breathe. I still can’t understand why a paper bag helps when I can’t breathe in to it? If anyone can shed any light on that, I would very much like to know. Once I was able to breathe again, the first thing I wanted — needed — was the good old vodka. A few minuets later the spasms stopped.
September 2007
The first thing I did this month was to see my GP. I told him that, in the main, I can cope with the pain, but not the anxiety. He is referring me for cognitive therapy. The only problem I have with this, is that whoever I see will not be aware that anxiety is a part of SMS for me, and therefore may not be able to help. We will see.
My neurologist has asked if I would like to try Naboline. It is a cannabinoid. Of course I said: “Yes”. It is used for people with MS and is meant to help with the pain. I got the prescription, and took one before I went to bed that night. I slept like a log, which I do anyway, but it was difficult getting out of bed when the alarm went off. However, once up, I was pain free, spasm free and, more importantly, I felt as if I didn’t have a care in the world. In fact, I felt so laid back, if we had been burgled, I would probably have told them where everything worth stealing was kept, and invited them to join me in a cup of coffee (providing they made me one too).
I don’t remember a lot about the day, apart from sitting doing nothing. We were meant to be going to a dinner party that night. I waited until lunch time, and had to ‘phone to say there was no way I could do the deserts. To be honest, I couldn’t even remember what I was going to make. Anyway, to make this story a little shorter, all I can say is that the effects of 1mg of Naboline did not wear of until the early evening. So in effect I lost a day.
A few days later David was in London for two days. I had been so worried about how I would cope in the morning, I decided I would try the Naboline again. I took one before I went to bed, but unfortunately the following morning my back pain, spasms and anxiety were as bad, if not worse, than usual. I tried the paper bag, which helped a little with the anxiety, but I had to resort to the vodka.
Of course, Chris was at home, but if I had needed him I would have had to send an Exocet missile up to his room — even that may not have woken him up. Why are teenagers never tired at night, but can sleep until lunch time, and still complain when, for the millionth time, one has asked/told/threatened them to get up? Of course I was never like that when I was his age!
The rest of the day was pretty much the same as the last time I used the Naboline. Or, in other words, a complete waste of a day.
I spent a week in Brighton with my sister. I had taken my wheelchair, which posed a bit of a problem as her house is not very disabled friendly, but other than that I managed well. Each night I would go to bed and give myself a mental tick to signify an SMS friendly day. We had lots of fun, as we share the same sense of humour. I would recount some of the stories, but it is difficult to relay them to people who don’t know me very well. The only thing I will say is that I hope the guy with the dreadlocks is OK now…
October 2007
We have started a dinner party group with my brother and my cousin. The host makes the main course and the other two couples make the starter and dessert. Unfortunately, on our very first night I didn’t count the carbohydrate content well enough and the next morning found my blood sugar was a staggering 27.5! I think I may have mentioned before that if it’s above 13, I become more rigid. However, apart from the rigidity and worse spasms than usual, the anxiety was worse too. My upper abdomen became rock solid and I had to resort to breathing into the paper bag. It helps — eventually! Not much more to write about this month, so I will leave it there.
November 2007
I have had some kind of chest infection since July. Despite different antibiotics, it has not cleared up. I have had a chest x-ray, which was OK, and on November 1st, I had to have a bronchoscopy (not a pleasant experience). To begin with, I got off on the wrong foot with my consultant.
I was supposed to be nil by mouth from midnight. He had previously agreed that my morning vodka would be OK. I had taken my insulin when I got up, and as usual did not eat breakfast. Normally, my BM would stay about the same throughout the morning, but not today. It kept dropping. I kept having sips of Lucozade and doing BMs every half hour. When I told my consultant, he (in a pitch just one step down from yelling) said: “It’s taken me half an hour to get here, and now I am going to have to cancel”.
I, on the other hand stayed very calm and said it had also taken me half an hour. I also asked if what amounted to an eggcup of Lucozade would really make a difference, and what choice, under the circumstances did I have? I think he was a bit taken aback at my response. He did manage to get his own back though. Because of the SMS I was supposed to have an IV sedative before the procedure. I don’t think it was meant to be given immediately before the bronchoscopy, as it only served to sedate me a little after the procedure.
As soon as he had finished, he told me all was well. However that’s not what my mind was saying, oh no, my mind thought: “Mmm, this is a good time for a panic attack”. I sat up and swung my legs off the bed. The nurses thought I was trying to escape. With a hoarse voice, I assured them I was not, but that I was beginning to have a panic attack and that I needed to sit on the edge of the bed.
There were no paper bags to be had, but one of the nurses held my hand and put her other hand on my upper abdomen. She told me to breathe slowly and gave me a lot of encouragement. Back in my room and that’s when my throat became paralysed. That’s when I realised why my consultant had been concerned earlier. If I had vomited it may have been the last thing I would ever have done.
We went out to eat one evening and I have to admit pasta is one of my favourite foods. So pasta is what I had. I so wish I hadn’t. About 2am I woke up sweating and feeling odd. I got up and did a BM, yet again I had not had the right amount of insulin for the meal. Cue a massive rise in my blood sugar levels, so I took some more insulin. Pasta, plus the sauce seems to be so difficult for me to work out. I went back to bed but could not settle.
I felt agitated and anxious. For the first time ever, I had to wake David up. By the time he had got round to my side of the bed I was gasping for breath. Another panic attack! I grabbed the paper bag, which I keep on the bed-side table. It was difficult to get it into position over my mouth and nose, as I could not let go of David’s arm. When things settled down — I don’t know how long it took — I got back into bed, but felt to anxious about lying down.
I sat up and watched the TV. By 5.50am I was a world expert on current affairs as I had been watching the BBC world news. Why it didn’t occur to me to turn over, I don’t know. All I was thinking about was that in 10 minutes I could turn over and watch GMTV. That was the time I fell asleep, and at 7am the alarm went off! So I got up at the same time as David and Chris.
One of my PAs was here one day (I bet she wished she’d ‘phoned in sick). I think I was feeling a bit sorry for myself. The morning turmoil progressed, as did my state of mind. We were having a coffee, when all of a sudden I threw my mug and an ashtray across the room, smashing both items. I ‘ran’ up to bed, crying, and soon fell asleep.
I was awoken by a GP (my PA had ‘phoned him). I don’t really remember what I said, but he recommended I read a book called Mind over Mood. It is quite good, but I think it would have been more helpful for me if I had read it when the anxiety was at a much lower level than it is now. He is also going to send an urgent referral for me to be seen at the cognitive therapy centre.
I saw my diabetic consultant and was given the thumbs up from the results taken the last time I saw him. I received a letter later that week telling me I have a hospital appointment at the eye clinic as they are not happy with my last eye screening results.
I’ve also seen another neurologist about my anxiety. My appointment was 10am. I arrived a little early. At 10.45am I asked one of the nurses how much longer it would take. I explained that I could not sit for too long. However it was about 12.15pm before I saw him. He was perplexed and wants me to have my thyroid function checked again. He is going to see if he can speed things along with regard to the anxiety problem.
When I left his room the ‘fun’ started. I managed to traverse the corridors to the exit without taking a wrong turn (a first for me). Once I got outside, that awful feeling started again, plus my back began to spasm. I sat in my wheelchair for a while, hoping things would settle down.
After a little while I decided I would try and make a break for it and head for the car. I had hardly gone any distance before I realised I could not make it on my own and found a guy who was also going to the car park. I asked if he would mind some company — he could walk and I would talk. By the time we got to my car, I knew I would not be able to get out of my chair, I was too stiff after all that sitting, plus my lower back was in spasm. The guy obviously saw the trouble I was in and somehow managed to get me, and my chair into the car. I sat for a while, hoping things would settle down.
There was an elderly man nearby getting out of his car, so I asked him if he could find a porter or any of the staff to come over. About two minutes later the whole crash team arrived! From what they had been told, they thought I must have been having a heart attack. With all that help at hand, I felt a little easier (heaven knows why, as not one of them knew anything about SMS). I explained my predicament and all but one of the team left. The doctor suggested I return to the reception area, and a porter arrived to take me.
I tried to ring round for help, but everyone was out. Apart, that is, from the one person who lives in the same village as the hospital — my step-mother. Unfortunately, I never thought to ring her… About half an hour later, after I had walked around the reception holding my chair, I felt considerably better and asked Andy (the porter) if he would take me back to the car. As it was all downhill to the car park, I didn’t have much option other than to be pushed most of the way. However, once I had reached my car I was able to get into it pretty much unaided. At last I felt able to drive home without being a risk to myself or other road users.
David had been in London for two days. When he came home and found out what had happened he was not a happy chappy. He had been ringing me — no answer. My sister had also ‘phoned and tried to get me on my mobile — no answer (that was because I had left it at home on the kitchen table, d’oh!). She was worried and texted David. After he tried to get in touch again, he eventually rang one our neighbours to enlist his help.
All he could report back was that there was no car outside. The door was locked and when he rang the bell the dog barked. It really is so nice to know people care enough to go to all that trouble if they think I may have a problem, but at the same time it can feel a bit claustrophobic when I have to tell David each time I am going out.
Anyway this month has been like a ‘Carry On’ film without the humour. Before I leave this month’s diary, I want to apologise. This diary seems to have become more dreary as time has passed. The other thing I want to say is “Don’t forget, this is my diary. If you are a sufferer, it does not mean you will follow in my footsteps”.
December 2007
Well, December cometh yet again. I don’t like December because the winter officially starts. We suffer the totally disproportionate saga of ‘getting ready for Christmas’ (the list goes on, but I won’t, or you will begin to think I am a miserable so and so, which I am not, unless it’s this time of the year…). We spent Christmas Day at my brother Martin’s house. There were 10 family members. All the guests made the starters and desserts, which took a bit of the pressure off Sue (Martin’s wife).
The highlight of the day was when we pulled the crackers. Jack — my nephew with autism — got a pair of nail clippers in his. Nobody knows why he is so fascinated with nail clippers, but they kept him happy for about an hour.
Last year I vowed to do something on New Year’s Eve but alas, when it came to it, I could not be bothered. However, fate lent a hand in the form of my best friend and her husband. They arrived complete with about half a dozen musical instruments. We three got out our guitars (and the wine) and made it impossible for any of the neighbours who may have been hoping for an early night, to get one. We may have been in competition with Jools Holland, but I think we had just as much fun. For anyone reading this who does not live in the UK, Jools’ music programme is the one to watch on New Year’s Eve. Bye Bye 2007.
January 2008
Hello 2008. The first bit of news this month is that Chris has had his hair cut. It is now above his shoulder blades and has low lights in it. The only reason for telling you this is because it has not been cut for over a year. I have never pushed him to have it cut — possibly because of my fond memories of the sixties when all the guys had long hair…
OK, I’m back from my daydream of flower power, free radio, concerts in the park, all night parties (actually I only recall going to one, and the only place I could find to sleep was in the bath). The only things I missed out on were sex and drugs, but I got more than my fair share of rock and roll (as I write I am listening to the Beatles).
I have sometimes wondered if I would like to be born in 100 years from now, only because a cure for SMS will have been found. However, if that were the case I would not have lived through the 1960s.
Enough of the ramblings of my memories of the 60s and I will get back to the present (if I really have to). The only thing of note this month is the holiday to Malta with eight family members. Apart from David we were all Ainleys (my maiden name). After thirty years one would think my other half would understand the ‘in’ jokes that begin at breakfast and end at bed time. It generally starts with one word, and over the course of the day we find link words which seem to get funnier as the day wears on. Perhaps it’s because David’s body contains no alcohol, or maybe he lives in a parallel universe. Who knows? Anyway at least he laughs with us.
Yet again I did a fair bit of walking. There was only one SMS incident. We had gone to bed and my blood sugar was a bit high. I woke up about 4am feeling quite agitated and anxious. I tried to get up to go to the bathroom only to find I couldn’t, as I was so stiff. I had to wake David up. It took two difficult and painful hours to go to the loo and get back into bed. I didn’t have any vodka to fall back on and had to resort to breathing into a paper bag as I was feeling a panic attack coming on. I skipped breakfast as I was still unsure of myself. Would I be able to hold a cup without spilling it? Would my food be flung off the plate by my shaky hands? After about an hour I had got myself together well enough to go out, and everyone took turns pushing me.
Nobody had had much sleep that night — but not for the same reasons as David and I. If they spent the night clubbing, drinking or whatever they did, then they were getting no sympathy from me. However, my heart went out to David. I do sometimes wonder why he stays with me. Let me think. Oh yes, I remember now — I cook (most nights), don’t complain when he plays golf, and listen with bated breath when he is talking about his car. (Just going back to the golf, one wonders how someone can play when suffering with five slipped discs. Perhaps it’s because he has analgesic infusions every six weeks).
February 2008
At last my appointment has come through for help with the anxiety. Six sessions of cognitive therapy. I have had two this month. I call it ‘my daft class’. The guy I see has a sense of humour — which is great for me, as I find it difficult to be ‘sensible’. I came out of both sessions wondering if he was analysing each and everything I said. I will keep you updated on how it goes.
I went to see my old Theatre group perform ‘Abigail’s party’. It was lovely seeing some of the old faces again. I would so love to join them again, but if I put my sensible hat on, I know it is not going to happen. While watching the performance, I began to reminisce. I looked at the set, and remembered how easily I used to climb ladders and paint the very top bits. I only performed two or three times during my time with the group. I enjoyed being the prompt. I would love re-join Junior Chamber, (except I am obviously too old now). I had some great times. I went to France and Holland, staying with JC members. The scariest part was giving a talk about Beverley to a hall full of French JC members. Trying my best to give the talk in French. I think after introducing myself and telling them where I was from, it kind of went downhill from there, and I had to revert back to English. Anyway, enough reminiscing. When I last saw Dr J, a neurologist who specialises in movement disorders, I kept the appointment with him, hoping he would be able to help with the anxiety problems (see last November). He suggested I had a honeymoon period from diazepam, rather than upping the dose, which I thought would be the advice. I began at the beginning of the month by cutting down by 2Ѕ mg. I have had no ill effects. Doing the maths, I expect to be diazepam free by September. I believe the reasoning behind this is that by next January, my body will see diazepam as a new drug, and respond well.
March 2008
There seems to be so much to write about this month, I don’t know where to begin. Let me look at my calendar…I decreased the diazepam by 2 1/2mg again, but by mid-month my anxiety levels had got so much worse, I went straight back to my original dose.
I had another meeting with Paul at my ‘daft class’. He showed me how to use the ‘Emotional freedom technique’ (EFT). In theory, one is meant to tap the meridian points of the body (the same as are used in acupuncture) while using a phrase applicable to oneself. The web address for this is www.emofree.com There are lots of pages which are not worth printing out, but I really do believe it is worth a look (I am writing this mid-April, and know how it has helped me).
I look back at how much money I (OK, David…) has spent on alternative therapies in the past, none of which really helped. Other members of the group have told me about therapies which have helped them, but I guess it’s horses for courses. Anyway. I am not sure if it’s the therapy which is helping, or the fact that in a certain light Paul has a look of Johnny Depp!
I have only had one really bad day this month. Of course it had to be a day when David was meant to be going to London. I like to be up before he leaves so he knows I am not having a hypo, although at times it must be difficult to know if it’s a hypo, or just the usual daft stiff Liz.
However, my back spasms would not stop. David stayed at home and kept telling me he could catch a later train. It was only when I heard him ‘phone to say he would not be attending the meeting that my spasms began to ease. Now I am no Einstein, but I believe without a shadow of a doubt that the mind, to an extent, is able to control some of the symptoms.
When I spoke earlier about the EFT, I have to admit I only use one aspect of it, called the ‘sore spot’. The way to find your sore spot is if you put a finger under your chin, slide it down to find the edge of the collar bone, and go down to the fourth rib. You will find it about half way between your nipple and your mid-line. I massage it at the same time as telling myself the anxiety will ease. Obviously I don’t say it out loud, well not if there are any men in white coats hanging around. I suppose the technique works to get the subconscious involved.
To be honest, if I were reading this, I would question the writer’s sanity. However all I can say is it seems to help me. I am a bit concerned, though, at what I have just written, as I don’t want anyone to think the answer is simply in alternative therapies. Medication is still vital.
I went to Bruges with my brother Steve. North Sea Ferries — very handy, as the port is only about 10 miles away. The last time David and I went on the ferry I was sea sick before we got out of the Humber, so this time I made sure I took a travel sick tablet. Steve and I were fortunate enough to have the best cabin, location wise. Once we got our bags into the cabin, we bade a brief farewell to Hull, had dinner and then went to watch the evening entertainment.
I wanted something from the cabin and rushed — well slowly rushed — along. I had only done about 20 revolutions in my wheelchair when an arm shot out in front of me. The woman to whom the arm belonged insisted she took me to my cabin. After a few minutes politely telling her I could manage, I had to give in and let her push me. A few moments later she started asking (in a slightly panicky voice): “Where is the toilet, will someone tell me where the toilet is?” Once she had located it, she spun me around. I asked what she was doing: “Taking you to the toilet Dear”. “But I don’t want the loo, I want something from my cabin,” I retorted. After having told her where the cabin was, I discovered her sense of direction was worse than mine.
When we got there she wanted to take my key and unlock the door. I told her I was quite capable of doing it myself, and she reluctantly gave in. I quickly got what I wanted, got back into my chair. I then had to give her instructions on the way back from whence we came. Her husband (a GP on sick leave) joined us on the 50-yard journey. As we approached, Steve he thought I had run in to difficulties as I was being pushed, and he invited them both to join us. It soon became apparent they were both pretty drunk. They both had problems too, but on this occasion I felt rather too selfish to stay and listen. After all I had spent days stressing about this short break, and I wanted to enjoy it. I made my excuses and went to circulate. Steve went to the casino and won Ј80. I, on the other hand found Bob from New Zealand. I wanted to talk about cricket and rugby.
Unfortunately he had other things on his mind — probably drink induced. I left him after a short while with the ‘stern’ warning that he had better behave himself or I would not speak to him on the return journey.
Sleep was calling so I found Steve and we turned in for the night (what was left of it). I insisted he slept on the top bunk, and he promised not to snore. I lay on my bunk and rubbed my ‘sore’ spot’, telling myself “I do not want to suffer any anxiety when I wake up”. Then, in for a penny in for a pound, I also said to myself “I don’t want back spasms, and if it’s not too much to ask, I don’t want back pain either”. It worked. I woke up to find all three commands had been obeyed (after all these years, you will now believe I really am crazy, but I don’t care, it’s working. How it’s working I am not sure. I only know it is).
We travelled by coach to Bruges. I don’t think I have ever seen so many people with hangovers. I felt great, as I had only had one glass of wine, and more importantly I had no anxiety, no spasms and only minor back pain. We spent the day cafй hopping and went on a boat trip. We met Gladys and Natalie (mum and daughter). Thank heavens for sane and sober faces. Natalie had been there before and we joined them for brunch. We arranged to meet in Bruges town centre square at 3pm. The four of us did our shopping and headed of back to the coach. Gladys (whose age I will not reveal) was feeling a bit tired, so I asked if she would like me to push her in my wheelchair. I had not realised how far the coach station was, and by the time we arrived I felt shattered. So I had a double vodka and two cups of coffee before getting on the coach back to the ferry.
I was amazed, and to be honest rather ashamed, to find most of the passengers had spent the day drinking alcohol. Anyway, everyone on the coach seemed to have found a new ‘best friend’ on the journey back to the ferry. For me it was Sean, a 26-year-old. When we got back to the ferry, Sean and I decided to use the escalator. Half way up, one of the wheelchair’s footplates fell off. We both laughed. I put it back on again. Neither of us realised there was another escalator to traverse before we got on board. So yet again it was a case of 1,2,3, go! We got to the top, after the same footplate fell off yet again, and were both in stitches. I think that was the first of many times that evening he asked me to marry him (alcohol induced of course).
After Steve and I had eaten, the fun began again. Sean and Bob were both given a red card, due to the fact they had both consumed too much alcohol again. I met up with a couple of German women, who were coming to the UK to improve their English (good luck to them as their English is probably better than most of the people they would meet).
Off on my travels again, and I met a couple from Nottingham. They were both deaf. We had a fab time. I knew quite a lot of the alphabet, but not how to make a sentence. So I spent time learning. I didn’t ask their names — but as they were from Nottingham I called them Robin and Marion. For anyone reading this who does not have a clue as to what I am talking about, look up Robin Hood either in a book or on the computer.
I had no idea of the time, but my body was saying “sleep”, so I found Steve in the casino, where he had won again (lucky so and so). As we walked to our cabin we saw a guy, nicely dressed and well spoken. We talked for a while, but then when he asked me what I thought about holiday romances, I told him we would be back in Hull in three hours, so how could we possibly have a holiday romance?
Both Steve and I realised it was time to go. There were two problems. Firstly he would not give up, and secondly, he was in the next cabin to us. I am not prepared to write about what else was said, but I ended up saying a rather shaky pleasant “Goodnight” and closed and locked the door very quickly. Phew, I was so pleased I had my brother with me.
I massaged my ‘sore spot’ again, giving the same instructions as the nigh before, and yet again it worked. In a matter of a few hours we were in line to disembark. I was standing alongside the wheelchair users at the front of the queue when Steve approached with a look on his face, which I knew had a story behind it. He told me he had overheard a woman complaining about me. The inference was that I had been feigning a disability, as she had seen me pushing, rather than sitting, in my wheelchair. I had been laughing (how dare I?) and socialising (the shame of it!). He had waited until she had finished, and then told her in no uncertain terms that she knew nothing about me, or my disability and had no right to say what she was saying.
The reality of SMS is we have good days as well as bad ones. It did make me wonder though how I would have felt had I been her. I know David feels awkward when we are in an airport or anywhere where the disabled have any kind of priority. He feels I should be sitting — a sort off ‘proof’ that I am disabled. I expect by now you all know I will not be told what to do. Apart from anything else, if I am able to walk, my wheelchair is a very good place to keep bags etc (saves carrying them!). Anyway, why should I sit if I can walk? As long as I can hang on to the chair, I really don’t care what others think. If they want to know, they can ask.
We had a committee meeting this month and have a new member. He is an SMS sufferer. The reason for telling you about him is the medication he is taking. It is called Sativex, a canibinoid. When he and his wife arrived, he was overdue for his spray of Sativex, and showed me how difficult it was for him to walk. About five minuets after he used the spray, he was able to walk unaided around my house — a place he had never been before. He used to smoke cannabis for pain relief (as many sufferers do). The difference was amazing. I have tried smoking it in the past, but it does not seem to suit me. I have never ‘chilled’ or had any beneficial effects. I believe it is legal in Canada, but here in the UK it unlicensed. However, it is obtainable in the UK through a GP or consultant. If you want to know more about it, have a look at the Sativex site on the internet.
April 2008
I really must pause for breath after last month. OK, breath taken. David’s brother has stayed with us for a few days, twice this month. The downside of this is that the guys dominate the TV. Sport, sport and more sport!
During his second stay I went to visit one of the group members who lives in Kent. It involved three trains and a London bus to get there. Wow! I did it, and thoughly enjoyed the experience. In fact, I was so excited knowing I had planned and arranged the whole journey myself (in a normal life, and at my age, that should not be anything to brag about, but as an SMS sufferer, it is).
Naturally, the journey was not uneventful (if you don’t want all the details, then skip forward to the end of the month). If you are reading this, then don’t blame me — I gave you the chance to move to a later part of the month!
Firstly, thanks to my brother Martin for taking me to the station and finding a shop (in the pouring rain) to get me a paper. I got the train from Beverley and met a woman who got on a couple of stops down. She worked in the pathology labs at my most hated hospital.
Strangely, she had heard of SMS, so we had something to talk about. My first change was at Doncaster. I saw a porter, and asked where I could go for a cigarette. He obliged, and off I went. I tried to look inconspicuous, which is not an easy task with a wheelchair. Two minutes into the cigarette and a warning about smoking blasted out of a loudspeaker. For an SMS-er, I moved quite quickly back to the station. The porter looked surprised at my sooner than expected return. I told him I had been spotted by the cctv, to which he replied — while trying not to laugh — “There is no cctv. That message goes out every 10 minutes”.
My next train soon arrived. I parked my chair, with my bag on it, but could not find a seat close enough to keep an eye on them. The path lab woman soon sorted out the problem for me — by asking someone to move. The journey to Kings Cross was enjoyable. I chatted to an elderly woman, travelling alone — very brave to go from Scotland to London.
Each time I wanted something from my bag, I chatted with Margaret, a woman who was keeping an eye on it. Not many people are brave enough to actually ask what my problem is, but she did. Naturally I was more than happy to tell her (more awareness raising). It turned out that she is a composer and musician. Furthermore, she told me she would send the charity a cheque. In no time at all we were at Kings Cross. Every capital city has a reputation for muggings and the like. In fact, a friend had told me I should take ‘mugging money’ with me. What! I am Liz, and from Yorkshire. They would have to kill me before I would give in to that kind of thing.
As it happened, my journey across three main roads to the number 73 bus, which would take me to Victoria station, could not have been easier. The ‘path lab woman’ escorted me and it seemed that everyone had a smile on their faces. OK, perhaps I am getting a bit poetical now, but you have to put yourself in my shoes — 56 (just), disabled, alone, and in unfamiliar surroundings, and a sufferer of SMS. How am I managing this, when there times at home when apart from other things, I have to crawl to get from one room to another?
Anyway, back to the story. I got to the bus and asked the driver how much the fare was. “No problem” he said “Just get on”. After a couple of minutes he asked if I would move further down, but I couldn’t as there were rails in the way. So I had to get off at the next stop, and get back on at the entrance in the middle of the bus. It was quite a long journey, but I got to see lots of familiar sights. When I got off I made a point of thanking the driver for not charging me, only to find if one is disabled, the ride is free.
Having got to Victoria station, I didn’t have a clue which platform I wanted. Perhaps I should have looked at my ticket — but why bother with such minor details when there is always a man to ask? The last part of the journey beckoned and I will have survived what could have been an horrendous experience. With no incidents to record, the train pulled in to the station in Whitstable and Jane and her husband Tom were there to meet me. Did it!
I wasn’t as nervous as I might have been, because Jane is an SMS sufferer, so I knew they would understand if I was not the ‘normal’ kind of guest one would have staying for a few days. They live in a town house (three storeys) and guess which floor I was sleeping on? Correct, the top one. Actually it was fab. I had a double bed all to myself, and my own bathroom. What more could one want? And Tom is a super cook, which meant we ate well.
The following day Tom was at work, and Jane and I decided to go into town. Jane ordered a taxi, and off we went. I barely had time to get my seatbelt on before we were there. I don’t know what came over me, but when the driver got my wheelchair out, I told him we would probably be using his services quite a bit over the next few days. I showed him our business card, and said: “If you will give a donation to our charity, I promise I will never try to kiss you”. I have never seen a man put a hand in his pocket, and pull out Ј10 so quickly. Nice for the charity, but a bit of an insult to me.
So, Jane with her three-wheeled walker and me pushing a wheelchair, entered the town centre. Having got Ј10, I was in the mood for more financial cheek. I saw a man coming out of a public loo while fastening up the top two buttons of his jeans. “Excuse Me,” I said, “but you are supposed to do that before you come outside. It’s a public offence.” Then, showing him the SMS business card, I told him the matter would go no further if he would be willing to make a contribution to the charity. I couldn’t believe yet another man was so quick to put his hand in his pocket! The most amusing bit of this story was that as he turned to walk away, I saw his wife, who must have overheard, laughing her socks off at him.
After lunch, Jane showed me a little more of the town. We walked down a street where someone famous (I can’t remember who) had lived. A little further on there were some builders working. They looked as if they needed a little respite, so kind soul that I am, I stopped and had a chat with them, during which I made a deal with them. I would finish up sweeping the rubbish — about one shovel full — if they made a donation. All four of them coughed up the change they had in their pockets. Result! (I’m getting the hang of this now).
Poor Jane had had enough walking, so we decided the best way back to her home was along the promenade. Along the way we saw two guys walking towards us, each with a pint in hand. I whispered to Jane “More money approaching”. “Oh! No, what are you going to do this time?” she replied. “I don’t know yet, wait until they get a bit closer”. As soon as they were within speaking distance, I began with: “Isn’t it a beautiful day?” The conversation carried on, and I asked them if they realised it was an offence to drink alcohol on the promenade (the way a lie just pops out of my mouth makes me think I missed my vocation, I should have been a politician). One of them was quite upset, as he had just been banned because of drink driving. A compromise was made — they donated to the charity and I promised not to utter a word to anyone official.
When we got home, we were both exhausted. It had been a long time since Jane had walked such a long way. We both knew neither of us could have walked so far had we been alone. Why is that, apart from the fact that it is something an SMS sufferer feels/fears? As weird as it seems, having someone nearby, even another sufferer who would not be able to help if one encountered difficulties, still fulfils the same necessary psychological crutch.
The following day I felt so guilty as Jane felt she needed to stay in bed. I had worn her out the day before. However, thanks to my ‘sore spot’ I was able to walk into town with Tom. We stopped off at the local yacht club for a liquid lunch. Tom was chatting to friends, and I went outside. I saw four men casually leaning against a wall, and of course I saw them as potential victims. No, no, I mean kind-hearted givers. I approached, pushing my wheelchair, and with business card in hand, I told them I felt it was my duty to fine them. They had bewildered looks on their faces as they asked “Why?” I told them it was because they were wearing shorts (that’s all I could think off at the time). When they questioned my reasoning, I simply told them, that personally I didn’t think it was warm enough. Anyway, they all emptied their pockets, as I think they admired my cheek. I did feel a bit guilty as they were RNLI men.
I did promise to put everyone’s name who had donated that weekend on here, so here goes — Tony, Lou, Grant, Roy, John, Russell, Nigel, Bob, Squitters, Mike, Mike, John, Tony, the taxi driver, the guys who were preparing for a wedding at the club, the builders at ‘Windy’s’ shop, and everyone at the Coach and Horses pub. If I have missed anyone out, then I’m sorry.
The rest of the time spent with Jane and Tom was, SMS-wise (thankfully), uneventful. I thoroughly enjoyed my time there. The journey back was fun, too. I got off the train at Victoria Station and took the 73 bus to Kings Cross with such confidence one would have thought I did it every day. A woman got on the bus a few stops later. She had a rucksack with her, and she was kneeling down next to me. I had visions of her being a suicide bomber. So I devised a cunning plan — at the next stop I was going to kick her rucksack off the bus, and then her, or the other way round (my mind goes into overdrive sometimes).
Anyway, she got off at the next stop. She was just fare dodging. I arrived at Kings Cross with only minutes to spare. As I walked down the platform, I heard my name called. I panicked, thinking something must have happened at home, but no, it was a porter (booked when I bought the tickets) there to help me onto the train. From there on it was plain sailing all the way back. David met me at Beverley station. By 1am I was tucked up in my own bed. I had used my sore spot and positive thinking, which I feel is why I managed to be ‘normal-ish’.
May 2008
Well, I don’t seem to be any the worse for all I have been up to recently. In fact, it has spurred me on to get a disabled person’s rail card. Oh, where, oh where can I go next? Any suggestions would be most welcome (I don’t eat much and am easily pleased!). My feet are itching, as are the wheels on my chair.
I have had my last appointment with Paul. He has helped me in a way nobody else has been able. So I made him a chocolate cake to say “Thank you” (I gave it to him after the last session, just in case there were any adverse effects, which may have meant the following sessions would have to be cancelled). As his demise has not appeared in the local paper, I am assuming I have not poisoned him.
As I look through my calendar, it seems almost everything is an appointment to do with doctors, either for David or myself. I have had a small operation on my left thumb. It was done under a local anaesthetic, which meant I could watch the proceedings. I can hear the gasps, but you must know by now that I don’t like to miss anything. In fact it went so well, I didn’t need to attend the follow-up appointment, as I had taken the sutures out myself, and all was well (remember, I used to be a nurse). Anyway I don’t think there is anything of significance to tell you about, so, until next month, bye.
June 2008
I’ve had my diabetic check-up this month, and all seems well. I had an appointment with my consultant who specialises in movement disorders, but I didn’t attend as I was pretty much OK.
David, Chris and I went to Trent Bridge to watch the test mach between England and New Zealand. Everything went wrong. We had to park about a mile away, quite a walk with the wheelchair. We arrived at 11am, and unfortunately we were sitting with the England supporters - we are NZ supporters. There was only one hour’s play before we were slaughtered. On the way out I asked for a programme, but the guy wanted the full price for it. I could say nothing to make him change his mind. I needed a cunning plan! (the disabled card and a sorrowful face didn’t work).
As I was trying to think of one, I saw two policemen. I approached them and a plan was indeed truly hatched. They went over to the guy, and with serious faces they told him he was under arrest. I’m not quite sure what reason was given, but somehow I ended up with a free programme, by which time the guy in question, and the policemen, all had smiles on their faces. David and Chris knew I was up to something and sloped off, out of sight. They have suffered my moments of, well, I suppose they would call it embarrassment. Anyway, programme in hand we went to meet friends for a picnic in the local university gardens.
I think this next bit is quite interesting. As you may know, I have pretty much overcome my fear of crossing roads (one of the main fears for many SMS sufferers). Anyway, we had a long walk back to the car and had to cross a main road — and we were almost knocked down by a speeding motorist! Yet I was the only one who stayed calm. Good, eh?
Chris has finished his GCSEs and left school. He went to his prom night dressed in a tux. He looked fab. As David took some photos of him, I had a lump in my throat. How can my little Snuggle Bunny be grown up — it was only yesterday he would fall asleep in my arms and I would carry him to bed (I had better finish there, as he is sitting next to me on the other computer…).
July 2008
I am writing this in September, and with my memory — or lack of it — I have to rely on my calendar to get my facts in order chronologically. Hopefully. So here goes: Having bought a disabled person’s rail card I felt I needed to get value for money and visited my sister Claire in Brighton.
I am not going to reveal the antics I got up to on the way — I could tell you, and change the names of the people involved, but it’s going to remain my little secret... Not that this has anything to do with what I have just written, but I want to say a big thank you to all the rail staff who helped me throughout my journey, especially Brian O’Brian at Doncaster and the member of staff at St Pancras (whose name I have forgotten).
Anyway, as usual, I had a fab time. I only had one fairly bad spasm attack and thankfully Claire was on hand to help. She always stays very calm. There is nothing worse than someone flapping and making a fuss as it just makes the situation worse. Claire and I visited a National Trust place called Wakehurst. Claire has what we will refer to as the “Ainley” (if you have forgotten, that is my maiden name) trait, aka a weird sense of humour.
At one point we found a large tree stump onto which I managed to climb for a proposed ‘photo shoot. I sat rather demurely for the first shot and posed as “The Thinker” for the next. Then I tried to stand up (gulp), still on the tree stump, would you believe. Claire took pictures of my efforts to stand and, somehow, I managed it! Trying to get back to a sitting position, which would then enable me to get back to terra firma proved a somewhat more difficult task. My (from now on un-beloved sister) kept snapping away despite my obvious discomfort, while saying “Go on Liz, you can do it.”
By the time I got down I was sweating with fear. As if that wasn’t enough, she pushed me in my wheelchair down a path which, for an SMS sufferer, seemed to be not much slower than the speed of light. So I asked myself: “After all she’s put me through, why oh why did I pay for the afternoon tea and buy her the chilli-pepper plant she had her eye on?” Don’t worry, she got her come-uppence! I’ll tell you about it in August…
David, Chris and I went to my brother Martin’s for a BBQ and to look at the local annual open gardens. I popped next door to take their neighbour, Sid, some chocolate cake. He is about 180 years old and disabled, but as bright as a button. When he told me he would like to see the gardens, which idiot told him she would take him? With help he managed to get into in my wheelchair and off we went.
On those occasions when I can walk with my wheelchair, it’s easier if there is some weight in it, and on this occasion there certainly was. I think I should get an award for pushing Sid — it felt like we’d gone up, over and down Mount Everest and through the rain forests of Brazil. OK, swap Everest for bumpy paths and kerbs, but believe me it felt as if I had been on an arduous expedition. You will be pleased to know Sid survived. However, a word of warning — if you attempt to do something similar, don’t do it while wearing new shoes! My feet were killing me after our little jaunt.
Sometime during the month, I needed some shopping from the local supermarket. Although I wasn’t feeling at my best, I was determined to go alone. Too stiff to take my walker, I opted for the wheelchair. I was struggling from the start, but Chris had seen me from the study window and decided to go with me. With the shopping completed, I faced the pain and fear of getting back and into the car. I would not have managed without Chris’ help. Driving home was no problem, but of course getting out of the car and into the house was a continuum of the earlier events. Did I have back spasms? Yes. Were my trunk and legs rigid? Yes Was I suffering with anxiety? Yes. Should I have even attempted the task? Perhaps not.
David and Chris went to the Motor Show in London and then on to see Deep Purple, a rock band once acclaimed as the loudest ever. They arrived home about 4am in the morning. Before they went I had everything I could think of to hand — life-line buzzer, walker, ’phone etc, thinking I would spend the evening watching TV programmes of my choice. However, the best laid plans and all that. I had a call from a member of the group, which lasted for three hours! The rest of the evening was spent worrying if David and Chris were OK. Why oh why does anxiety always have the upper hand in my life? When they arrived home I pretended to be asleep on the sofa. How they could not hear my heart thumping with relief that they had got back safely, I don’t know.
August 2008
I got a call from my sister Claire to tell me she had picked one of the peppers I got her while visiting her last month. Both she and her children had taken a bite, only to find their tongues were on fire. They drank milk, ate yoghurt, anything to cool their mouths. No doubt I was called every name under the sun. Not my fault, but someone always has to cop the flak…
After I almost wet myself laughing, I told her it was pay-back for the way she had treated me (it was a pity the kids had to suffer though). I did panic a bit when she told me her eight-year-old son was going to the loo. I yelled down the ’phone: “Make sure he washes his hands first”.
Chris went to Derbyshire with a friend to a four-day rock festival called Bloodstock. David paid for it to say well done for getting good exam results, enabling him to start college. I got a call from him on the day he was due home saying: ”Mum, we’ve missed the train”. Fortunately, I had a friend with me. She, unlike me, is quite unflappable and after numerous ‘phone calls, and use of my plastic, we managed to get Chris and his friend home safely.
When I thought about it afterwards, I was happy it was the only mishap he encountered over the five days. At 16, I would never have had the confidence to be away from home (I was a bit of a drip even in the 60s). In fact. I thought I was brave going to an all night party.
David has been for his six-weekly analgesia infusion for his disc problems. It always makes him feel a bit rough for about 48 hours, but then the effects begin to kick in. In a ‘normal’ house people are rushing around, getting ready for the day ahead, but our day usually starts with “Did you sleep OK?” or “How are you feeling today”.
Usually I can’t get my head in a comfortable position. Although David falls asleep as soon as his head hits the pillow, he often has disturbed nights. When he talks in his sleep, he is always so angry. I know I have said it before, but I do believe it is often worse for the carer. Perhaps because they feel they should be able to take away the pain and everything that goes with it. Sadly, they can’t. I don’t know how he copes with a stressful job and all that goes on at home.
David took me to the eye clinic where I was told I have a cataract starting on my left eye. I was given the option of laser treatment but declined as it is not giving me any problems at the moment.
We have had our monthly dinner party. I made Hungarian goulash. The evening was, as usual, lots of fun. A dimension we have introduced to these occasions is someone has to reveal an embarrassing story. I’m not telling you any of my tales, but as you can probably guess, there are plenty of them. And as David would be quick to point out, they can go on forever... I’ve never let brevity get in the way of my tale telling, even if the audience has long since fallen asleep.
September 2008
Before I start this month’s account of ups, downs and in-between bits, I would like to say hi to all my SMS email friends in Australia and the USA. Buenos dias to those in Spain, and guten tag to everyone in Germany. All I need now is a contact with someone in Italy, as I love the country and its people.
What a crazy month this has been. I will go through it chronologically. Chris and I went to Brighton again. My disabled person’s rail pass only lasts until next May, so my intention is to use it up and wear it out — health permitting, of course.
Having left on the Thursday, David called me the following day to tell me that thanks to storm damage part of the bedroom ceiling had collapsed. Although some people say we all have a guardian angel, I believe mine took an early retirement years ago. However, it must have come back for one last look on this occasion as David told me three bricks and a breeze-block fell on my pillow! Life can be fun when one manages to escape just in the nick of time.
Anyway, back to Brighton. It rained. Chris used my plastic — obviously with my consent — but I didn’t realise he ‘needed’ so many clothes. Oh well!
Thanks to drinking too much vodka, I managed to upset Claire. Thankfully, we are close enough to have talked it through and make up.
When I first discovered the help alcohol gave me in relaxing the muscle spasms, it was wonderful. Mornings can be pretty rough when thanks to lower back spasms one is clinging on to the kitchen table for grim death, with feet around the chair legs so as not to be thrown off the chair.
The problems started when I began to drink it when my back was painful, not just in spasm. Even when I realised it only helped with the spasms, I still carried on. Perhaps my thinking was that it would ‘work’ this time, and so the morning routine consisted of getting up, checking BM, counting out the day’s medication, take insulin, take tablets, make and a cup of tea and then have a vodka. The weird thing is that I don’t need much for it to help me. Although I try to say “Don’t do it Liz, your back hurts, but it’s not in spasm this morning,” I still do.
I also use alcohol when I am anxious. ‘Normal’ people would look forward to a night out, a holiday, an enjoyable experience, but I just get so anxious. It puzzles me that as a former nurse, and someone with a modicum of intelligence I choose to ignore the dangers. I fear there may come a time when it rules me. If you are religious, then please pray for me that it never happens. Perhaps it’s my way of shutting out life’s problems. Believe it or not, I only drink Hi juice orange in the evening, unless I am at a social event. So my message to other sufferers is, by all means use alcohol, but only when you need it! Of course the main problem is obvious, if I have more than one in the morning, it means I can’t drive. At this point I must tell you that many sufferers use either alcohol or cannabis, as they are almost instantaneous analgesics.
After writing about alcohol, the next thing to tell you about will seem a bit bizarre. As a diabetic, my driving licence needs renewing every three years. The DVLA this time decided I also had to sit an assessment. Not a re-test, just an assessment.
Definitely no alcohol that morning, I told myself. Inevitably, it was a day when my back decided to have double the fun, spasm activity-wise. I’m not a pretty sight at the best of times, but watching this disabled dwarf, who to all intents and purposes looks as if she has St Vitus’ dance, coupled with a look of pure fear on her face, would be enough to put a saint off his breakfast.
Thankfully, David ranks several levels above a saint and as the assessment wasn’t until 2pm, he insisted I have a drink (I didn’t need much persuading). One shot and my back began to settle down. David then drove me to Leeds for the aforementioned assessment. It began with a spatial awareness test (quite good fun actually), which I apparently passed with no problems.
When I was asked which of their cars I would like to use for the test, I asked for an automatic in British racing green. As they didn’t have one, I told them they could choose one for me. Aren’t I considerate?
When asked what car I normally drive, I told them “a black one or a blue one” to which they replied: “But what type?” I said: “A Subaru.” They said: “Which model?” I replied: “Well, it depends which colour car I am using.” I wasn’t trying to be awkward but I think that was the point where they gave up asking me questions about cars and led me to the one I would be using. It turned out to be a semi-automatic Vauxhall (apparently).
So, seat belt on, mirrors adjusted, engine on and off we went. We drove around the grounds first and at one point my instructor told me I was the first person not to have driven over the curb on a particular corner (I’m only telling you that to show off). I had to spoil it, though… about 10 minutes later I remarked that the surroundings looked familiar. “Yes, that’s because you have just driven around it” was the reply. The only thing I could think to say was: “Well, I am a woman and we don’t have a sense of direction.” Clever, eh? I think that was just before I went over the curb I’d missed earlier… At this point I will bore you no longer, except to say I went up hill, down dale, around roundabouts etc, etc and almost sent the instructor through the windscreen when doing my emergency stop. After 90 minutes the ordeal (for both of us) was over. I passed, by the way. Good, eh?
The day of my driving assessment was Chris’ first day of further education. He is doing equine studies at Bishop Burton College near Beverley. For those in the know, it’s quite famous. David and I forewent a visit to Ikea on our way home so we would be home before Chris to find out how things had gone. It turned out that the first day is all form filling etc, so not very exciting.
Chris set off for college on Day Two, still full of enthusiasm (which, for anyone who’s had teenage sons will know, is rather unusual). He was probably more excited by the fact we had tickets to see the band Nickleback at Sheffield Arena that evening. But when he got home, I only had to look at his right hand to know he had broken his wrist (this is the fourth time it has happened).
As any good mother would do, I strapped it up, gave him analgesia and … off we went to Sheffield! A fab night was had by all, but Chris was in pain by the time the evening drew to a close so I was dropped off home and David took Chris to A&E where, several hours later, they confirmed my worst fears. Home by 4am and back at hospital by 11am to have a pot put on. He doesn’t get it off until October 20th, which means no riding or being close to a horse. As it was a horse that broke his wrist, that’s fair enough, but Chris was — and has been — hugely downhearted by not being able to take part in riding and fears he will get left behind. His tutors have been good, though, and encouraged him to take this set back in his stride. Hopefully he will.
October 2008
I have, as usual, been up to my eyes with group and charity work, and am writing this mid-November. Well, at least the builders have been to try and rectify the gaping hole in the bedroom ceiling. Fab? Well no, not quite. New flashing and other things that builders do to fix a hole in the roof. The ceiling was renewed, and arrangements were made for them to come on the 16th to reconnect the electrics and decorate. Why, oh why do I always believe things will go according to plan, when from past experience I know they don’t?
I was on desserts duty for our diner party this month (we have changed the name to Come Dine With Me). I made lemon tart and a chocolate truffle torte. Yummy — for those who are not diabetic. I coped quite well during the day as I paced myself. Had a shower in the afternoon and got out the clothes I was going to wear etc. So why, as the time to leave approached, did my anxiety levels increase? On such occasions it feels as though I am suffering from equal quantities of OCD and bi-polar.
Once we arrived, I began to calm down and the evening, as usual, was lots of fun. I almost always suffer the following day because a) I can’t count the carbohydrates, as I don’t know how much of what has gone into the meal and/or b) I feel quite stiff because I have been sitting all night. Oh! The joys of having a good time.
Steve and I went to Bruges again. Well, it would be silly not to take advantage of a buy one get one free offer. It was odd because I didn’t suffer any anxiety during the day. However it started with a vengeance once we boarded. I had taken a small squash bottle of vodka, and it was not long before I needed it. Our cabin was so far away, it felt like a half marathon to get to it.
Although there was air con in the cabin it was still too hot, so of course I had to fiddle with it. If anyone from North Sea Ferries is reading this, I was not the one who somehow managed to dislodge the square bit that covered the air con workings. I am also not the one responsible for Steve almost knocking himself out every time he got out of his bunk and bashed his head on it!
We had arranged to meet Natalie and Gladys (we met them on our last Bruges visit, and have stayed in touch). It was lovely to see them again. The entertainment was quite good, but the only thing missing were the ashtrays, which meant we had to go out to the deck — not an easy task with a wheelchair. However, there always seemed to be a strong, willing guy or two to open the doors for me.
Apart from the talking it was fairly quiet — an ideal opportunity to do a bit of awareness raising! Steve had disappeared, probably to the casino, Natalie and Gladys had turned in for the night, so Billy-no-mates Liz stayed on deck. Any ‘normal’ person would, when feeling a bit anxious, have gone inside, but not stubborn Liz. “I can get through this,” I told myself. In my defence, it would have been difficult to get in, get a drink and get out again, so I drank the vodka I had taken with me, not all of it, but more than I should have.
One of the guys to whom I had been chatting was driving down to Italy the following morning. Bruges? Italy? Mmm, Given the choice I think Italy would have been the clear winner. However, I think he would have noticed the bulge in his case if I had stowed away in it!
I can’t believe the awareness raising I did that night, and the promises made, and yet nobody has sent huge amounts of dosh, or even emailed me (remember, as I write it’s November). Anyway, c’est la vie, evening over, and off to bed!
I was up early the following morning, not suffering from mal de mere, I think it was more mal de hangover. I made my way on deck with a coffee and to get some fresh air. Deviating for a moment, I hadn’t realised it had been a full moon the night before, and I managed to get a ’photo of the moon at one end of the ferry and one of the sun at the other.
As I have said before, it doesn’t take much to make me happy. Steve, Natalie, Gladys and I set off for Ostend, but the weather was cold, wet and windy, so we stayed in Bruges — yep, should have gone to Italy. We spent the day coffee bar hopping and shopping.
Back on board, and after eating I was out on the deck again with all the other lepers, aka smokers. Before long we all had our mobile ’phones out, reading jokes. I decided to have an early night, as the decorators were coming. I have to say at this point it was, SMS-wise uneventful, apart from the anxiety.
When I got home there was a note from David, which read ‘Go and look in the bedroom. No decorators today, the builders are coming instead.’ A big wet patch on our new ceiling. The builders came and did something on the roof and went again. This saga has been on-going since early September. This is the kind of thing a lot of people would, quite rightly feel stressed or anxious about, as it’s not just the ceiling, but the fact that space is limited because everything barring the mattress has to be stored elsewhere. In this type of situation, the most I feel is cheesed off. SMS anxiety is usually unwarranted.
We had our charity committee meeting this month. As secretary for the charity I should write the minutes, but it’s the only job I can delegate, and I do. The ‘only’ thing I have time to do is use the computer and ’phone. Sounds easy, doesn’t it?
My step mum, Joyce and I went to see The Buddy Holly Story. An enjoyable night, and I have had my music ‘fix’. The only problem when going to the theatre is the downward slope to get to the seat. Even with a walker it is impossible to do it alone. If I had my way everywhere would be either flat or slightly on an incline — whichever way one is headed.
November 2008
I started with a cold last month and it seems to have developed into the closest thing to the ’flu I have ever had. We had tickets to see the comedian Frankie Boyle, of ‘Mock the Week’ fame. Not a chance of me being able to go. So, armed with every device known to man and a big box of tissues, I resigned myself to the sofa and TV.
The following day was even worse. I was supposed to be going to the local folk club to see Benny Gallagher (if anyone has managed to wade through this diary, you will know he is in my top 10). I was determined to go, and took a dose of almost everything in the medicine drawer, but by 6pm I knew I would not make it…and had to ’phone to cancel.
I was in that state between sleeping and waking up and could hear myself singing ‘Surrey with a fringe on top’. As I began to wake, I was feeling quite cross because I knew I wasn’t singing the song at the right speed — I blame the pony, it would not get into trot. It was only when my eyes opened, I realised the pony had been keeping time with the drips from the ceiling. I guess a more appropriate song would have been ‘Raindrops keep falling on my (bed).’ All this in one week!
Carol (one of my PAs) and I decided to rearrange the concert and theatre programmes, which I have collected over the years, and adorn the walls in the loft simply because we could not think of anything better to do. The loft is the one room in the house in which I get anxious, because there is so little to hold on to.
Anyway, there we were, nails, hammer and frames in hand. We decided what was going where, but when I started to hammer a nail in the wall, which was an arm’s stretch high, my anxiety levels rose. My back went into spasm, as did my legs. I felt as though I was trying to hold up the wall with greasy arms. The only thing I could do was ask Carol to hold me. I then sat on the floor. The spasms stopped, but I was shaky for quite a while. Carol made the coffee and I acted as the supervisor, while she carried on alone. So all was not lost!
It was a feeling reminiscent of the day, many moons ago when I was ‘stuck’ up the steps, painting the garden room — if only Carol had been there that day I would not still have the inch long scar on my shin (you need to go back to the time it happened to understand what I am talking about).
It’s strange how one lives with the day-to-day pain of SMS, almost accepting of it. Yet when an incident happens, which causes real problems, be it anxiety, rigidity or spasms, it’s yet another reminder that life will never be ‘normal’ again. Oh well, I suppose these things are sent to try us. Speaking of health issues, Chris has been diagnosed with glandular fever, which means no riding. He is still going to college, but apart from tutorials he is unable to do anything else.
I believe David and I are the only two people in the UK who are praying for rain at the moment. We need to see if the work on the roof has cured the bedroom ceiling problem, as we are still sleeping on a mattress on the floor. Oh, I almost forgot — my brother Steve came over to do something on our web site. Before he started, he said: “I’ll just have a look at the holiday sites”. Before I knew what had hit me, six of us were booked to go to Faro, Portugal, next month! Thank heaven for Ј2 flights and inexpensive hotels.
December 2008
December 5th and off we go to Faro. We stayed in a lovely hotel. Quite amusing, really, as the room Chris and I had had a shower, whereas the other two rooms had a bath. At first I was a bit disappointed, but having tried the shower, both Chris and I were amazed at the places the multiple showerheads managed to reach — without actually knowing how it did it! I have never known Chris spend so much time under water, apart from when he goes swimming.
The Christmas decorations in the village were superb and the main streets were adorned with red carpets. Having said that, it is not the most disabled friendly place. I had to push my wheelchair everywhere as the pavements were so uneven (even on top of the red carpet). The kerbs were, as is the norm in Europe, very high — yet another barrier for someone in a wheelchair. The front wheels are small, and therefore even small holes are enough to get jammed into.
Because the pavements were so uneven, I had to hold someone’s arm, as well as push the wheelchair. I would grab whoever was the closest — perhaps that’s why everyone tried to stay ahead of me! Obviously we managed, but I felt I was constantly holding the others up. It’s strange how anxiety makes one walk with hunched shoulders. When this happens to me, I find I can only look forward. I can only turn my head if I stop walking.
Chris was desperate to find a gift and Christmas present for his girlfriend. Almost as much as I was to find a florist. One of my weirdo obsessions is to beg, buy or purloin a cactus plant every time I go on holiday. We were both successful. The girl in the florists asked me if I had MS, as I appeared to resemble her mum. As you know, I don’t waste an opportunity to raise awareness and gave her an SMS business card. She promised she would give it to her mum’s neurologist.
We did so much walking that after our three day break I felt shattered and really wanted to go home. As we were driving back from the airport, we were all looking at the clock on the dashboard, and when it struck midnight, we sang Happy Birthday to Chris. When we felt we had embarrassed him enough, we had to find other things to torment each other about — much of which I could not possibly let you know about, as most of it was aimed at me.
It took a while for me to recover and I am now wondering if these mad cap ideas of going on short breaks is really worth the anxiety, which of course can descend on me at any time, anywhere, and happens for reasons best known to itself.
Great news, we have had rain! Actually, not so great, as the ceiling is wet again. Believe it or not, it happened yet again when I was away. Another reason not to leave David home alone. However the builders came out again. I am at the stage where I know who drinks coffee, who drinks tea, and who takes sugar. Anyway the saga continues, and we now have to wait for rain again.
We had a low key Christmas. A lazy day-ish. We had a late Christmas diner at my brother Martin’s house. Most people eat about 2.30pm, but I only eat one meal in the evening. Martin and Sue’s son, Jack, has autism. Eating later meant he could continue his routine. Sue had had an operation the week before, but still managed to cook a super main course. I made the starter and deserts.
We saw in the New Year’s at a party with friends. For the first time we didn’t have Chris with us — he had gone to a party with his friends. Why do our kids have to grow up? Wasn’t it was only yesterday I was changing his nappies, and then in the blink of an eye he is a young man going to college. Our only use now is to provide food, clean clothes, act as taxi service and a cash machine.
Our daughter Eloise has had her demons to deal with, but is hoping to start college again. And so we say goodbye to 2008, and hope 2009 brings us all the things we need.
January 2009
How can it be another year? Time really does fly by more quickly as one gets older. So, where to start? Oh yes, last month I said short breaks are becoming a bit difficult. So why when my brother Steve rang did I agree to go to Bruges in February and a five day trip to Spain, Gibraltar and Morocco in March?
I was in the kitchen watching breakfast TV and ‘Mr Motivator’ was showing the nation his exercises for the day. As I was feeling in fine fettle(!) I decided to join in. Walking on the spot, arms up, arms down, in, out, shake it all about. Before you think I have made a miraculous recovery I must point out it only took about three minutes. Feeling pretty good with myself I glanced out of the window to see two men in a van outside, both looking in my direction. Obviously they would not have known I was following an item on the TV...
David and I bought a Wii as a joint Christmas present. It’s fab! Great exercise. I ‘do’ ten-pin bowling and tennis. I have experimented by playing it while sitting in my wheelchair. If one has some upper body strength, it can be done. I play right and left handed as I don’t want to have a muscular right hand, and bingo wings on my left arm. I play with as much gusto as if I am really playing. Unfortunately I injured my hamstring during a game of tennis. Don’t feel so surprised. By now you must know I have a mad gene.
I’m sorry to start talking about the bedroom ceiling saga again but it really is getting to me now. The builders say the problem is the flat roof. The guy who put the roof on says not, but has been and patched it. It’s rained and guess what? The ceiling is wet again…
An independent roofer confirmed the roof is the problem. One particular day there were so many people here, I didn’t know if I was coming or going, and decided to get in touch with Trading Standards. By the end of the day I was shattered. I went to bed — still just a mattress on the floor — about 11pm. I was feeling anxious and could not get comfortable. I watched the TV, but could not concentrate.
For the first time in almost a year I felt I might be going into panic mode, so I got up and watched a film. I felt very rigid, but thankfully no spasms. Of course, I headed for the vodka and contemplated getting drunk. Thankfully I had my sensible hat on and only had one small glass. I rubbed my ‘sore spot’ while telling myself to stay calm. (You need to look back to last April, if you don’t know what I am talking about).
I toyed with the idea of staying downstairs, but decided to go back to bed with my MP3 player. I still couldn’t settle, and instead of listening to the music, all I did was wonder what the next song would be. 3.30, 4.30 and I was still wide awake. Anyway, I must have fallen asleep at some point, but was awakened by David’s alarm at 7.15am.
As you know, my house is an ‘unregistered coffee shop’ and today everyone and their dog called in, interspaced with the ’phone ringing. By the evening I was in no fit state to cook and we ended up with a take-away and, for me, an early night.
Do any of you remember your dreams? Last night I dreamt I was chasing a car as the driver had my money and passport. I pursued the driver down a motorway. I have no idea if I caught the culprit (I think I must have, as no money is missing and my passport is still in the drawer). The only point of relating this is that in a dream, why am I not disabled? Weird!
One bit of good news is that Chris is now able to ride again.
February 2009
I’m not sure if I have mentioned the fact that sometimes I don’t get the warning signs of a hypo. On one particular occasion all I felt was a bit sleepy. Deciding I needed the loo, up I got and off I went. I remember resting my head on the cistern — and the next thing I heard was David and Chris telling me to drink some Lucozade.
At some point later I awoke to find myself lying on the study floor, covered with a blanket. A moan from me brought the two of them to my side: “Are you back with us?” My reply was “Yes, but my bottom is freezing” (neither had thought to pull up my jeans). A hot wheat bag arrived a few minutes later and the problem was rectified.
What a wonderful family I have. Well, that’s what I thought until they showed me the photograph one of them had taken while I was in the loo. They had covered my “bits” which would have caused offence, but it was a horrid picture. The problem is that because I am such a technophobe I don’t know how to delete it from the camera. It’s a Canon camera, so if anyone out there can help me out, please send me an e-mail with step-by-step instructions!
Last month I agreed to go on two short breaks. Little did I know the first one, Bruges, which I and my brother have been to twice, and is basically a cigarette run, had somehow turned into another seven family members’ break. Anyway, I almost single-handedly (with a little help from Chris) managed to cause havoc during the entire break.
The Thursday morning of the day of the holiday was fine. Anne, my cleaner, came and when she had finished we had our usual coffee and gossip. I needed some cash from the hole in the wall and then had to up pick Chris from college.
But in the hour before I was due to set off, the snow fell heavily and suddenly it was about 2ins deep. There was no way I could get to the car, so Anne kindly did the honours and helped me.
With minutes to spare we were, time-wise back on track. My brother Steve picked us up and off we went into Hull to get brother Martin, wife Sue and nephew Jack. Before we left my house I had thought about going to the loo, but as the journey to the ferry was about 10 miles, I thought I could wait.
Thanks to the snow it was four hours later before we arrived at the ferry. Can you imagine how my bladder was screaming? Anyway, once the problem was dealt with we set out in search of our cabins. Chris and I shared with Steve and Sue. As usual it was freshen up, eat then watch the entertainment. Chris got up to dance, and made friends with all the others in his age group.
When the music had finished, Steve and Sue went to the quiet area. They had taken my drink with them and I had told them I would join them shortly. Well, obviously, that was not going to happen, as I was having so much fun with all Chris’s new friends. It was about 2.30am when we arrived back at our cabin. I will spare you the details of the wrath we incurred from Steve for not joining him and Sue and then turning up in the middle of the night.
The following morning we got off the ferry and drove to Bruges. The problems were apparent from the moment we got out of the car. Liz, as per usual and as determined as ever to be independent, held everyone up. The scenario was this: Steve and Sue, hand in hand walking around; Martin, Sue and Jack in the middle (with Jack wandering off at any given opportunity) and Chris and I at the back, trying our best to catch up — even with the help of a wheelchair and Chris, it was not an easy task.
By the time we got back to the car, I still hadn’t got the Belgian chocs I had wanted to get as a thank you for Anne. Anyway, an argument started — and everyone (it seemed to me) felt I was to blame. Looking back, I can see now I had been selfish. I had had offers of help, but declined them. If I had let someone push me, we would have got around much more quickly.
Back on board the ferry and another night of fun and frivolity beckoned for Chris and I (everyone else had gone to bed). This time, all the youngsters were from Belgium. We had so much fun, and it was about 5am when we finally rolled back to the cabin. We had the help of two guys, as Chris was a bit worse for wear, and I, being a woman, have no sense of direction (apologies to the women who do). I don’t think Steve and Sue appreciated being woken up again. Whoops! I spent the following day apologising to the family. Thankfully the apologies were accepted and normal family relationships were resumed.
On the 20th David came home from work early. He was not a happy chappy as he had been told — out of the blue — that he was to be made redundant. I know we are not alone, it’s happening all over the country, but when it happens to you it feels pretty scary. He feels particularly bitter about what’s happened as he has done so much for the company and he felt he was being cast off like so much rubbish.
March 2009
I have been given an exercise bike and have ridden it every day. Each week I add another mile. By week three I realised three miles was my optimum ‘journey’. With my MP3 firmly in my ear — only one ear, or I would not be able to hear the ‘phone ringing — I am cycling from Land’s End to John O’Groats. Just for the record, I am still in Cornwall. I have discovered I can complete my three miles before Bob Dylan finishes ‘Desolation Row’.
This month David seems to have been on an endless journey of constructing proposals, counter proposals and attending meetings with regard to the redundancy. He has worked from home quite a lot, mainly because of the effect on my health. The anxiety symptoms have led to a lot more stiffness and spasms. The trio is back! I have also had numerous hypos. Thankfully (touch wood, fingers crossed etc) I have not had a panic attack. I’m not sure either of us could cope with that.
Despite the doctors telling me nobody has ever died from a panic attack, when it happens it’s easy to believe I would be the first. My poor sore spot is getting quite sore itself. I’m finding it hard at times to be supportive because of the effect all of this is inevitably having on me.
David’s ‘support’ needs are quite simple — a foot massage, an assortment of chocolates, a cooked breakfast — nothing major. But even a cooked breakfast is out of the question when at times I can’t even stand to use the grill and need help virtually 24/7.
I listen to what he says, although understanding David’s job is an alien concept to me. He works in the media which, as usual, is at the forefront of the recession assault (it’s all to do with advertising — the media is built on advertising and in a recession, advertising is the first to go, hence the huge impact on newspapers and the media in general).
But the whole thing has been made so much worse because the person behind his redundancy is someone he thought was a friend. The old saying about keeping your friends close but your enemies closer is no use when the friend turns out to be the enemy. I’ve never seen him so bitter — he puts a great store on loyalty and he obviously feels this is the ultimate betrayal. I’ve never seen him so stressed, even though he tries to hide it from me to protect me.
It never rains but it pours: David’s redundancy, the effect it’s having on me — and now Chris has contracted glandular fever, commonly known as the kissing disease. The up side is that at least he is being kissed. The down side is he can’t ride, as his spleen is enlarged. At times like this, is it any wonder we all feel we must have done something dreadfully wrong in another life to deserve all this?
I can’t really think of anything amusing that has happened this month. Don’t let it put you off reading my diary, as I am hopeful things will get better. With any luck, humour will be restored as soon as possible. Actually, I tell a lie, there was one incident: David came home one evening feeling particularly down. During the conversation I said: “Don’t worry, at least we have each other and our health.” It was only when he gave me a strange look that I realised we only have the former. Between us (at the moment) we have five slipped discs, tennis elbow, diabetes, hypothyroidism, SMS and a cataract. And none of that includes Chris! Lack of sleep does not help matters either.
And just for the record, we are still sleeping on the floor because of the roofing problems. It’s an annoying factor, but a typical one for us. Still, I’m sure we will get there at some point.
April 2009
Well, this month really has been like the Curate’s egg. Chris, Eloise, her fiance, James, and I went to my niece Clover’s 18th birthday party. David couldn’t go as his brother was arriving for the weekend. The following probably sounds weird — to a non-sufferer at least — but it seems the more I am looking forward to something, the more anxiety I suffer. If I can get the anxiety out of my system the day before an event, it helps.
For the party, I made sure the present was wrapped. I showered and put on my face. Got out the clothes I would be wearing. All done! However, as the time to go drew closer, I could feel the anxiety starting. Even a small thing like getting dressed was difficult, as I was shaking inside. Why??? I couldn’t even write the card; David had to do it for me.
By the times James came to pick us up I was almost ready to throw in the towel. The only thing that stopped me was knowing that once there, I would be okay and enjoy it. I had to enlist the help of David and James to get me from the house to the car.
We arrived fashionably late (because we got lost). All the family were there, and lots of people I hadn’t seen for a while. It took some time for my back to settle down, but by the end of the night I was on the dance floor with Clover’s boyfriend. I would say dancing, but I think that would be an ambitious statement.
Just so you know how totally bizarre SMS is, I will now tell you of my next venture. We have a Silver Bond in the 2010 London Marathon. Virgin is sponsoring the Marathon, and I was invited to attend a bond holders’ reception in London. As the funding would be coming out of the charity, I opted for the most economical train fare — but for £2 extra I managed to go first class! Great idea as it costs £2.50 for a coffee (free in first class) in the pleb’s seats (where I would normally sit).
I got everything ready the day before and I didn’t suffer any anxiety, so I assumed it would hit me on the day. Read on! I was up at 6am, showered and dressed, and ready (no anxiety, and only mild back pain). David took me to Beverley train station at 8.30am. A train pulled up on the other side of the station at 8.45, and it was only when the driver shouted across to us, asking if I was going to Doncaster, that we realised we were on the wrong side of the tracks... In my (limited) experience, the Doncaster train always departs from the side on which we were waiting.
I had to grab my overnight bag and climb over the bridge and David carried my wheelchair — not really a task one wants to undertake with five dodgy discs. But we managed it (first of the travel problems). Once on the train, I spent a moment or two wondering if or when my brain would realise I was alone, and decide to punish me for daring to do such a thing.
Having arrived at Doncaster, I found myself on the right platform. My connection train pulled in and in front of me was carriage B. I was booked on carriage L. So off I went as quickly as an SMS sufferer with a wheelchair and an overnight bag could go. I found carriage L and pressed the button to open the door, but it didn’t. Press, press, press — and the doors still wouldn’t open. Then the train pulled out without me. How dare it? (Second travel problem).
Almost as soon as I had closed my mouth in disbelief, Brian O’Brian — a porter who always seems to be on duty when I get the London train — appeared with a colleague. “Liz, I’ve been blowing my whistle to get your attention” (call me dense, but who would pay any attention to a whistle being blown at a railway station?).
Fortunately the next train was due to in 10 minuets and Brian stayed with me until it arrived (if you’re reading this, thanks Brian). Two cups of coffee and the company of my MP3 player saw me quite nicely in to Kings Cross at 12.30pm. I managed to cross three main roads to get to where I was going, the number 73 bus stop.
From that point I began videoing what I could of London for an SMS sufferer in Australia (I may have SMS, but I am a woman, and can therefore multi-task).
Deviating for a moment, sad though it may seem, I love the 73 bus route, in fact so much so that if anyone knows Ray Davis of The Kinks, then please ask him to write a song about it — it could be the new Waterloo Road!
I was going to the London Museum and knew which stop I needed. Just to make the hat trick of travel problems, the driver announced there had been an accident and the bus would be taking a different route. Fortunately, after asking around, I found a guy who was also going to the same place and we got off together (I mean the bus).
He offered to walk with me, but as I would have held him up, I declined. The museum was fab, and I even managed to get the staff to narrate and do the videoing for me. Big thanks to them.
Time was pressing and I needed to be on my way. The exit I wanted was at the opposite side of the building. It also meant I had to use the lift. No problem, well, actually it was. Everyone and his dog were using it. Once I got in, I found I was the only person wanting the floor where I could exit the building. So I was up and down like a fiddler’s elbow. Eventually I made my escape.
I knew where I needed to go to get to the university and set off. I stopped a woman on the way to ask if she knew where I could get a coffee. She asked if I had MS, as I walked rather like her husband, who has the condition. We must have talked for about 20 minutes. It turned out she was a nurse so I gave her an SMS card and she promised to do some awareness raising in the hospital in which she worked.
Anyway, no time for a drink now. I rushed off to meet Pam (our chairman) at the university. In we went and were greeted by four Virgin co-ordinators. I honestly don’t know what came over me, but before my brain got into gear, my mouth started.
Somehow I managed to get all four of them to ‘buy’ my SMS business cards, thereby raising awareness and cash for the charity. Plus, half the sponsorship from one of the guys who is going to do the Trans-Pennine walk next year.
Once inside, Pam started chatting to a representative from another charity. Off I went, telling Pam I was going to mingle. I spotted a guy with a Virgin badge on and lied my head off by telling him I had made a bet that I could get Ј10 for my charity before the reception began, and Ј10 found it’s way out of his pocket and into my hand. Can it really be this easy, I wondered? Well, only time would tell. By the time we went back in, my front pocket was bulging.
The evening started out with a quartet of drummers called The Drum Cafй. Everyone in the hall each had a bongo drum, and after instruction from the band we all had a lot of fun — and sore hands.
The speeches about Virgin Money Giving were short and to the point. Good thinking, as it keeps people focused. Thankfully Pam was listening for both of us, as I was plotting my next move (anyone who knows me, or has managed to wade their way through my diary, knows by now that I will stop at nothing when SMS is involved).
As we left the auditorium, I kidnapped my bongo drum. One of the co-ordinators told me where the band were coming out, so while everyone else was tucking into the super buffet, I was negotiating a price for the safe return of the said drum. We settled on Ј10 and a Ghanaian 2,000 Cedis note (which I later found was worthless). One of the guys asked if I would like to keep the drum. What a silly question — of course I would; it would go very nicely with all the instruments we have at home.
Off I went in search of Pam. She had filled a plate with all my favourite food — salmon, salad, salmon, pasta and more salmon, yum, yum. As the evening drew to a close, Pam and I said our cheerios. The next thing I knew was I was sitting in a bar with the Virgin lot. It is debatable as to who asked whom, and the debate carried on. Perhaps we will never know the answer to that one.
Someone bought me a Guinness while I got out the video and began filming. Fortunately, there were a couple of people who had not contributed earlier — and how could they refuse when I was filming them?
Each time I sat down, another drink appeared — it would have been rude not to drink them! Sir Richard’s daughter was there, too. How embarrassing is it when having been introduced earlier one forgets their name? I knew it ended with a ‘y’, and to be honest after a few glasses all I could do was point the video (which by this time was a bit wobbly) and say “Hi Molly, Polly, Holly, which ever is the right name.” Naturally I made sure she had one of my cards. She is a doctor and said she had heard of SMS.
At this point I would like to thank Vince, Kevin, Jeremy, Scott, James, Roy, Andrew and Fiona not only for the money they donated, but also for putting up with me. All I can say in my defence is that I remain extremely passionate about my charity, even after consuming copious amounts of the afore-mentioned booze.
When the taxis arrived, I discovered they had ordered one for me too. I arrived at my God-daughter Dawn’s home about midnight, and found the taxi was pre paid. Yes, I feel another thank you coming on.
It was pitch black, and I didn’t know which bell to press — so I pressed all of them. Well what else could I do? Anyway, after being let in, I fell asleep as soon as my head hit the pillow. I spent the following morning playing with Dylan (Edward and Dawn’s son). At five months old he is a bit young to teach the bongo to, but he did try.
Dawn walked me to the bus as my back was beginning to pay the price of the day before, and I needed her help to get on. Everyone got off at the stop by Euston station, so I followed. By this time my back and legs were yelling: “Enough’s enough”. I didn’t have the time to rub my sore spot, or the energy to take my bag and bongo drum off the wheelchair, which would have enabled me to sit down.
The 73 bus was in sight and, for a ‘normal’ person, it would have been a minute’s walk. I managed to walk very slowly toward the station, but I had to ask for help to get across the bus lanes as they had a small downward slope. I felt so frustrated and angry. Yesterday I was walking without my shoulders being hunched and I had a smile on my face. Yesterday I could have conquered the world, but today I have to pay the price for that privilege.
Somehow I got on the bus to King’s Cross and again needed to ask for help for the one in two slope at the station. Once on the train I began to relax. After all this time one would think I would know which is the instigator — anxiety, spasms or rigidity, but I don’t! All I do know is that if one starts, the others follow.
The journey home was uneventful and gave me time to count the donations — Ј138 and a bongo drum! I have decided to keep the bongo for myself. Perhaps I can use it to ‘drum’ up some awareness raising when needed — or they may just pay me to stop!
One day, for reasons unknown, I decided to decorate the conservatory. I knew I would not be able to reach the pointy bit at the top, but I was not going to be put off. So, prep finished (that’s the bit I don’t like) and paint, brush and pad to hand, off I went. I was a woman on a mission. By the time painting the pointy bit approached I was feeling tired. I decided to leave it until the next day.
The next day arrived, and all I had on my mind was my determination to finish the painting. I opened the steps to make it into a ladder and put it up against the wall. “Quickly, quickly before you loose your nerve” I told myself. My mind was taking one step forward and two back. No, it was playing stupid games with me again. Therefore the closer I got to the ladder, the more anxious I became. I remember thinking that it would be easier to rob a bank.
I took myself upstairs and shed a few tears. They were tears of anger and frustration. The job got finished, but not by me.
We went to a party at my step-mum’s house. Yet again, I had to go through the pre-anxiety state before enjoying myself. Having arrived, and a glass of wine later, I began to relax. It was really funny as I became the focus of attention of all the youngsters (nieces and nephews) at the party.
I was telling them a story (Ok, so I embellished bits here and there). They sat wide-eyed as the story progressed. However, it was even funnier watching the adults watching me, wondering what was going on. I made the kids promise not to tell any of the adults what the story was about. My sister came over the following day and, despite her attempts to find out what the story was, I left her in suspense.
By the way, if you have been following my rantings about the bedroom, you will be pleased to know it’s done, finished, ready, hurrah!
I was planning to put a wish list on this month’s diary. However, as we won the Lotto, perhaps I don’t need to. Actually it was only Ј10. Anyway, here’s number one on my wish list: To go to the Galapagos Islands to see George, the only surviving tortoise on one of the islands (I even have a picture of him in the kitchen). Naturally I would take my tortoise, who is also called George, even though he is a she. Yes, even I am aware of how my brain rambles and diversifies as it wishes.
So that was April — pretty eventful, eh? There was something else, though, what was it? Oh yes, David was made redundant on his birthday by those nice people he worked for. I can’t begin to tell you how he feels but I think it’s the disloyalty and betrayal that hurts most. I’ve never seen him this distraught before and hope I never do again. He built the business for them and to be discarded so callously is completely unforgivable.
May 2009
Thank heavens this month has been relatively quiet. I have managed more letters, emails ’phone calls and Skype calls and completed a couple more questionnaires, although my ‘to do’ tray doesn’t look very different…
I had my diabetic check-up which went well, and David went away with his brother for a few days to play golf and escape the bitterness that is lingering over his redundancy — and I was determined to be okay while he was away, which I was, although my sore spot was worked overtime. So May came and, went SMS-wise, rather uneventfully.
June 2009
This month started with a visit from one of the group members and his wife. They started by asking if I knew anyone called David and Mary P? Well, yes, actually, they are neighbours. What a small world! They belong to the same caravan club.
We’ve also had two long-weekend visits from David’s brother Mike (I should start charging him rent). It was actually quite timely — on one occasion I begged a lift back with him to his home near London as part of my journey to see my sister, Claire, in Brighton. Not only did it break the back of the trip, but also saved on costs, so perhaps I’ll have to let him off the threat of rent for future visits.
The rest of the journey to the south coast was uneventful but I enjoyed a few days R&R with Claire before we both came up north and she stayed a week with us. We’re now completely gossiped out (for the moment, anyway).
Chris has finished his first college course and has gained a distinction! The real work starts in September when he begins his two-year National Diploma in Horse Management. Let’s hope he can get through without any broken bones this time.
Although on the face of it this month hasn’t seemed any different to other months, when I looked at my calendar, just about every date was related to GPs or hospital appointments for either David or myself. That tells a story in its own right.
I must confess I’ve been in rather a strange mood, as well. Not exactly feeling sorry for myself, but I have spent a lot of time (too much time?) wondering what life would have been like without all the health issues. I can only conclude that I must have been very bad in a former life — or been in the wrong place at the wrong time in this one. Who knows? Anyway, enough of this mood — if anyone out there wants to cheer me up, they can text me some jokes: my mobile number is 07792482918. I like any kind of joke, as long as they are not cruel. So get sending — think of it as Liz therapy!
July 2009
OK, a new month, a new mood. And my turn to host our Come Dine With Me evening. The weather was kind, which was good as we were having a BBQ. It was a treat to be able to sit in the garden at 11pm without freezing. In fact, I don’t think there was a goose bump in sight.
Our wayward daughter Eloise came over for a meal. It was good to see here. I couldn’t help but notice that she ate more than her normal miniscule portion, which was very pleasing. Don’t know if it was a one off, but it turned out she’d run here for most of the way — eight miles! Just thinking about it tires me out…
But it did remind me that when she was in her second year at high school (age 13) she was the second fastest cross-country runner in the whole school. If she had kept it up who knows what she might have achieved? Similarly, when David was at school, he was very much into cricket and was asked to go for trials with Yorkshire — until they realised that although he lived in Yorkshire and his roots were in the county, he wasn’t actually born here and therefore was ineligible. Probably just as well — by the time he was 16, his passion for the opposite sex had replaced his love of cricket…
Talking of cricket, the Ashes are on at the moment, so we’re both glued to the TV. I am in touch via Skype with a couple of sufferers in Australia, and it felt so good when I casually dropped into the conversation the fact that we’d won the Ashes. I wondered if they noticed? (Yeah, right — I’ll bet they were gutted but were never going to admit it to a whinging Pom).
We were invited to my brother Simon’s 50th birthday party in London. Chris and I went, while David stayed home to look after the dog. Actually, I think he wanted a bit of ‘David’ time. When I think about it, there is never a day when he gets time alone and everyone needs some breathing space.
Anyway, Chris and I set off. The plan was that I would ring Simon when we got to his local station. As regular readers will probably realise, things rarely go to plan. Sure enough, it didn’t this time, either.
After several ’phone calls and no reply, I started to get anxious. Fortunately, I spotted two bobbies in their patrol car outside the station and asked for their help. Did they know this address? Apparently not — they peered at their map and both gave me different directions!
Anyway, it was either the wheelchair or my winning smile (I favour the latter) that prompted them offer to take us there. As good and kind as they were, it’s a good job it wasn’t an emergency as we were all over the place looking for Simon’s home. It didn’t help that perhaps I’d slightly misled them with the wrong address. Anyway, when we finally sorted out that minor detail and we arrived in the right street, I discovered we were missing another vital club. The house number. I thought it was 24. When we got there I realised it wasn’t so we kept on driving, mostly in the seemingly vain hope that I’d recognise the building even though I’d only been once before. You guessed it — I didn’t…
Finally, with frustrations building and the patience of our Good Samaritans close to breaking point, Chris rang David who simply looked in the address book. If only we’d thought of that first time…
Turned out the number was 124. Well, I was only a hundred out. When we got there, Simon was outside waiting for us. Fortunately, our kindly coppers had a good sense of humour and asked if it would add to the fun if they took me in — in handcuffs. I would have been up for it, but unfortunately my back wasn’t. I did ask if they would drive round again but this time with the lights flashing and the sirens going, but apparently that is illegal.
Even so, I loved the look on my brother’s face when I was escorted in – in truth, helped to the door by one of the officers. Footnote: the reason I could not get an answer when I ’phoned was because everyone was in the garden with the karaoke machine going full blast. Long trip, very eventful and loads of fun — just another day in the extraordinary life of an SMS sufferer from Yorkshire.
I saw my neurologist this month as my back is giving me more prolonged rigidity. He has suggested I try swapping my meds around. Obviously this will be a lengthy process as I will have to meter the changes for at least a fortnight at a time. He also wants me to have an MRI on my lumber spine. The last time I had one was during the diagnostic procedure, and I didn’t like it at all. Read on to see how I got on.
Mike has been here again but unfortunately David‘s now got golfer’s elbow quite severely to add to his bad back so no golf was played. Ever resourceful they did the next best thing and watched the real thing on TV. Lazy buggers…
August 2009
I am continuing my mix and match with the medication. The only difference is that I am sleeping more. I joined the ‘fell asleep and missed the end of the film’ society a long time ago, but at the moment I am lucky to still be awake at 8pm.
I have also had an MRI scan. I felt quite calm during the procedure. Just goes to show how being doped up with muscle relaxants helps.
On a lighter note, we were invited to a neighbour’s 40th birthday party. He has had a games room built at the bottom of the garden. We all had a fab time with dancing in the garden, plus pool, darts and quizzes in the games room. Best of all — enough food to feed the guests for a week. Actually, that wasn’t the best bit; the best bit was the fact it was only a two minute walk home (how sad is that?).
The best news this month is that David and I have completed three months without a cigarette. I used Champix tablets. David preferred the nicorette inhaler. The downside is that I have put on 7lbs. One weird side effect is that I can now remember all my dreams. Why do we always wake up just when the good bit is about to start?
Despite the fact that I have complained about my lower back pain getting worse, since stopping smoking, I have rarely had severe back spasms in the mornings. Something for which I am eternally grateful.
September 2009
I have received the results of the MRI scan I had last month and it seems I have a protruding disc in the lumber region. The problem with this is that I don’t know if it is the SMS or the disc causing the lower back and left leg pain.
I went to the theatre to see a comedian — can’t remember his name, he was that good. There were six of us and were living the high life — we had a Box, just like posh folk and royalty (you’d know why that was funny if you knew my family). The only problem was that I had to kneel on the seat to see the stage and that gave me pins and needles in my legs and lower back pain. A real double whammy and an expensive price to pay for my airs and graces.
Afterwards, there was a fireworks display going on to celebrate the start of the 2009 Round the World yacht race which started, of all places, in Hull. We drove down to the harbour to get a closer view and just as we found the perfect viewing place the last firework went off. Not the best of evenings, I must say.
I attended another Virgin Silver Bond Holder’s reception in London (all to do with the London Marathon in April 2010 in which we have a runner). I was staying in university halls of residence in Covent Garden, so I decided I’d have a walk around. And then the heavens opened. Walking on slippery pavements was a nightmare and I can’t remember how many people I asked for help but assistance was invariably given willingly, even if directions were all over the place.
I finally got back to my digs, soaked to the skin and, because I was travelling light, without a change of clothes.
I had managed to reserve places at the reception for Kofi, one of the group members who lives in London, and for Doctor Shahrzad Hadavi who, if all goes to plan, will be carrying out the SMS research programme.
I was surprised at the SMS differences between Kofi and me. I don’t believe anyone would think we have the same condition. I walked, pushing my wheelchair, while Kofi walked with two elbow crutches. My back sways in the lumber region, whereas Kofi’s body seems to bend at the waist and his upper body looks as if it is trying to keep up with his legs (you’d have to see to get exactly what I mean but I’m sure you get the gist).
Later, Shahrzad and I sat outside the union bar discussing SMS. At some point one of us decided we had better make a move or it would be morning. We tried to find our way out but as all the doors were locked, the only way was down some steps to a road neither of us recognised. Fortunately, Shahrzad had a GPS ’phone, yet we still had to walk around a fair bit just to get a satellite lock to find out where we were in the first place.
In the end, we found somewhere I recognised and Shahrzad rang her brother for a lift. How sweet of him to come out at such a late hour! After he had secured my wheelchair in the boot, he asked where I wanted to be. Ah... the address was in the back of the wheelchair. Ho hum, just AN Other minor inconvenience to overcome.
It had been a long day and I slept like a log for what was left of the night. But I paid the usual price for so much activity and was quite stiff the next morning. I had to resort to sitting in my wheelchair and that’s no easy feat on the streets of London (or anywhere, for that matter). For those of you ‘normal’ people reading this, let me tell you why: there is a camber on most pavements which means one arm has to push the wheelchair while the other has to pull just to stay in a straight line. Kerbs are a no-go area and constantly you have to look for suitable crossing places to get across the road. And then you need a weather eye for any bumps or holes in the pavement, otherwise the subsequent sudden stop upon encountering such an obstacle would see the user hurdle forwards out of the chair and landing in an unsightly heap on the ground.
Anyway, pavement attack over and back to the story: My plan was to do some sightseeing. The big question was, where do I get a bus to see the changing of the guard at Horse Guard’s Parade? (I know everyone in London seems to use the tube, but that’s another no-go area for someone in a wheelchair). I needed a bus, bendy or otherwise.
I stopped this chap in a smart pin stripe suit and asked if he knew where I could get the aforementioned bus. A puzzled expression spread across over his face as he cogitated. He had no idea. Fortunately for me, though, my Good Samaritan was early for his meeting and decided to make me his good deed for the day. Rolling up his sleeves (metaphorically speaking), he grabbed the wheelchair and we set off looking for the bus that would ferry me to my chosen destination.
He was a game guy, I’ll give him that. He had no more idea than me that we would end up walking what seemed like miles, passing bus stop after bus stop, until we finally found The One. What a sweetheart he was.
After discarding my friendly assistant (I think he went to a nearby hotel to recover from his unexpected ordeal), I jumped (sic) on board the next bus to arrive. Only to find I had to get off at the very next stop…
By now my back had eased up a bit and I decided to walk the last bit. My timing proved impeccable — the changing of the guards was due to start in the next few minutes. With the help of an obliging attendant, I even managed to find the perfect place to witness the spectacle.
While I really enjoyed the event, it made me sad to realise that some of those young men on horseback, performing so elegantly and precisely, may be going to war the following day. A sobering thought.
I spent the rest of the day either walking, sitting or on the bus. I ended up at the British Library, where I arranged to meet Cyril, an old friend, at 5pm for coffee. My train was due to leave at 6.15pm but as the station’s barely five minutes away, we had plenty of time for a natter and a catch up.
When I boarded the train home, I discovered my ticket was lost in the bottomless pit of my handbag — it’s a woman thing. Although I knew I was supposed to be in standard class for the return trip, I decided to get on the same 1sst class carriage I used on the outward journey. Imagine my delight when a message over the intercom told people to stay in their seats as the train was due to depart. And no one asked me to move! So there you go — today has proved to be my lucky day.
October 2009
This was a short month (not literally, of course). The only thing of note was our committee meeting. Pam, our chairman, stayed the weekend and witnessed by increasingly severe back spasms first hand. Thankfully, the actual meeting didn’t last long, but never the less I felt anxious and a bit shaky for a while. It was probably due to the anxiety of hosting the meeting. As per usual, once the event got started, I began to relax. As I have said in the past, it must be very difficult for a non-sufferer to comprehend this sort of reaction to such a run-of-the-mill event. November 2009
David and I went to a local folk club to see Rod Clements, formally of the Geordie pop band Lindisfarne, who wrote one of their hits Meet Me On The Corner. And a good night was had by all. I even got Rod to sign a poster for me. It is a small world, though, isn’t it? The next morning I made one of my very infrequent trips to the bank and who should be there too? You guessed it — Rod Clements. So I managed to say something incredibly cheesy: “When you wrote Meet Me On The Corner, I didn’t realise you meant this morning”. It wasn’t actually as dumb as it sounds — the bank is on the corner of the street… I think he saw the funny side.
David’s been struck down with severe sciatica. He found the pain unbearable for weeks; he couldn’t find any respite in any position, didn’t get a night’s sleep for weeks and couldn’t even stand up to go to the loo. Not nice.
For me, though, the strange thing is that I cope far better when things like this happen and I’m needed. However, it did make me realise how much walking is involved. For example, if we wanted a drink, it was two trips to the kitchen as I can only carry one mug at a time. I’ve also been walking the dog, but it takes me so much longer. I drive to the play area and park the car alongside the path, as it’s easier to get the wheelchair in and out of the back seat. To a normal person, the path appears flat, but it’s not I promise you. I sit in the chair for half the walk and, if I feel up to it, I push it back. If not, I sit in it until my arms are worn out and turn around using my feet to push me backwards.
One day, Ollie (my dog) had gone exploring and sniffing new smells. So I sat alone and waited. It must have seemed a bit strange to see this lone woman in a wheelchair just sitting on a path going nowhere and doing nothing. True to form and proof yet again of the compassion of most people, a passerby on a bike stopped to make sure I was OK.
Another day, on the same path while out with Ollie, I was listening to my MP3 player and singing away no doubt at the top of my voice when a weird thought jumped unbidden into my head — if there was anyone behind me now they would think a cat was being strangled by an odd-bod in a wheelchair.
It’s strange how much more there is to see when one is in a wheelchair. I often come back with something from my walks — dandelions for my tortoise, dog wood branches for their beautiful colour, all sorts of weird and wonderful things. One day I found a piece of wood. OK, nothing particularly unusual about this, I admit. It was a just a nice shape. So I put it on the chair seat and carried on walking. A few minutes later, a good-humoured woman passed by and asked with mock sincerity: “Is the wood not feeling very well today?” “No” I replied, “I am keeping it in protective custody as Ollie keeps trying to chew it”. (My guess is he won’t try to chew the holly I will be getting next month).
The end of the month and David is still in a lot of pain. To be honest, I am not coping quite as well and have increased my medication. I can’t possibly let him be worse than me!
December 2009
There has not been much cheer this month. I saw my neurologist about my increasing anxiety. He prescribed Citalopram, but after reading the possible side effects, I have decided to wait until the New Year before I start taking them. David has had an MRI, which showed a sizeable protrusion in his lumber region. I anticipated he would be in hospital before Christmas but no, his consultant has gone on holiday until January. David also had to postpone his pain clinic appointment as it was the day before Chris’s 18th birthday party as he is usually a bit spaced out for about 36 hours after the treatment.
The party was good fun and almost every member of the family from the north, south, east and west came to join in the celebrations. Big thank yous to all the family members who helped us out with the catering.
I coped OK until about mid-afternoon. Then the anxiety kicked in, which led to rigidity. One of the family members staying with us finished the last of the cooking, while I had a gabapentin washed down with a glass of wine. It helped, but I was still shaky both while in the shower and getting ready.
I was still struggling as the party began that night. I took my walker, but still needed help to get into the venue. In fact, it took a while before I could relax enough to enjoy the evening. Poor David was suffering too. To be honest sometimes it’s a bit hard to keep a smile on one’s face when in pain, and I think we were both happy when it was time to go home.
We had a busy Christmas Day. Our friends Ray and Vanessa paid us a visit and we made a quick trip to a neighbour’s, and then went to see Eloise. We spent the rest of the day — Christmas dinner included — with my brother Martin, his wife Sue and other family members. As always, a good time was had by all. I didn’t get anxious or suffer much with rigidity that day. I’m not sure why the day was OK. The only reason I could think of is that from getting up the day was so busy my brain became so confused it couldn’t find the right lane to overtake my body!
Of course we have had a lot of snow. Very pretty to start with, but as the French would say, pas des plus de pas dans le neige (no footprints in the snow). Well, not mine anyway. There have been no happy chappies in the Blows household this year. Chris’s New Year parties began around the 29th and we didn’t see him until 2010. So at least he had some fun!
May 2010
Well, this is the first time I have written anything in my diary this year. The workload entailed in running the charity is almost overwhelming. Anyway, life seems to be yet more of the old ‘same as, same as’.
My thyroxine meds have been doubled in the hope I will have a bit more energy. I now take 50mcg daily.
Apparently, I now have a cataract in my right eye to match the one in my left. Perhaps the NHS believe in bog offs (buy one get one free). Neither eye poses a problem at the moment, so life will carry on as usual. I/we have still been to parties, meals out etc, and brother-in-law Mike still comes over to play golf, although David’s back still prevents him from joining in, much to his major league frustration — all those years at work and never finding enough time to play golf, now he’s got all the time in the world...
I spent a week with Claire in March — always a tonic, as we find the silliest things to laugh at.
I don’t think I have mentioned Tanya before. She is an Aussie and fellow SMS-er. She saw my site about two years ago and it has gone from an occasional e-mail to ‘phone calls and then Skype. She talks as much as I do, so you can imagine how many hours we have logged up. The conversations are often along the lines of “When are you coming over?” “Well, when are you coming over?” Just to shut her up (only joking) I asked her if she would set up a support group Down Under, which she did, and has a very successful support group on Facebook.
She came over here in May, and it was a blast. She spent four days in London (very brave for someone who has never been out of Australia in her life). As she can walk unaided and use the Underground she was able do see much more than I can when in London.
Then she spent eight days with us and the list of things I had planned went straight out of the window — we were just so busy all the time. As the weather was quite good, we started our day in the garden with a coffee and toast spread with vegemite! I showed her the old town in Hull, but we didn’t see as much as I had wanted her to see, although we did go for lunch at the oldest pub in the UK — ‘Ye Old White Harte’ — built in the 8th century. The customers were so friendly that before we knew it we had to make quick a dash to see anything else.
We did get up to some antics but I think the details should be kept between Tanya and I. I think her favourite memory will be the day we went to Castle Howard (a stately home near Malton in North Yorkshire) and the endless laughter which not only had us in tears but in real pain!
I suppose her least favourite memory would be the two occasions when she had to call 999 for me, each time because I was suffering a hypo. I can’t believe it, as only once in my diabetic life has there been a need for that. Both David and Chris were away for the weekend, but Tanya wasn’t phased by it as she too is a former nurse. In fact, although I was unconscious for two hours, she managed to Facebook her family to tell them what was happening, keeping an eye on me at the same time — well, she is a woman, therefore she can multitask!
Of course my anxiety had to keep making unwanted appearances during the week. There wasn’t room for three in our get together week, but anxiety has selective hearing! Perhaps that’s why I used my wheelchair more than usual. Eight days together and, believe it or not, the only time we talked about SMS was when we discussed our medication. Tanya takes more diazepam than I do. Another difference is she takes an ‘appropriate’ amount depending on what she has planned for each given day. She thought I should be taking more.
June 2010
My neurologist has given me many different medications in the past, but nothing has made any real difference, so I decided to give Tanya’s suggestion a go and almost doubled the dose. Hey, come back Dr Tanya. I can do things more easily. Some days I can even walk unaided in the garden!
I spent yet another week with sister Claire. Her son, Willum, had been banging on about changing his name to Martin, no reason given. During the week Claire bought a tortoise, and the subject of a name came up. Despite the number of names suggested there was no obvious reason not to call it Martin. The only problem was that we all kept calling it George. Before you think we have all gone completely mad, the reason is that it’s the name of my tortoise (there you go, puzzle solved).
Chris entered his first show jumping competition. He spent two weeks walking and jumping the course — on the horse obviously, as he wouldn’t have got over the fences on his own! On the day of the competition, he groomed her until she shone. Sadly, someone took her out and she came back lame, so Chris had to ride a horse he didn’t know. Chris looked fab, unlike the horse which had an “I’m not doing this” look in its eyes. True to itself, it refused twice at the first jump and Chris was eliminated.
July 2010
We had a committee meeting and later a fundraising event at Beverley racecourse on the 2nd. We managed to raise £590. It was an evening meeting, so I don’t think we did too badly in two hours. We are trying to raise money for research. Hopefully this relatively small amount, together with the funds in the charity account will enable the process to begin.
The same weekend saw the annual open gardens in the part of Hull where my brother Martin lives. It was a hot day and the women alternated looking at gardens and eating alfresco at Martin’s. The guys just ate, drank and soaked up the sun.
My only complaint is that as I was pushing my wheelchair (meaning I can manage ok) the girls left me to it. Obviously it’s much quicker on foot, whereas I had to manoeuvre around plants, trees, garden features etc. I was the last one back, but nobody batted an eyelid. They knew I had my ’phone if I had needed help, and in a way it’s quite nice to be treated normally.
My brother Simon and his family have moved from London to a village about three miles from us and are loving the quiet life.
David was asked to do a couple of days consultancy work in London and took the opportunity to combine it with spending a few days with his brother Mike. I think he enjoyed using his brain again.
Chris was away working too, so I had a few days to myself. Happily there were no problems.
Mike came up for one of his long weekends. I decided I could not bear yet another marathon sportfest on the TV, so I booked a two day visit to Liverpool and Salford Quays. When I got to Liverpool’s Albert dock I had to sit in my wheelchair as my back was so stiff. The first thing to think about was where to go. The second was… how to get there. The ground was very lumpy and bumpy (my wheelchair doesn’t like that).
Then out of nowhere came a guy asking if I needed help. “If you can just get me on to the flat bit, I will be okay” I told him. When he asked where I was going, all I could say was “Where would you suggest?” To try and make this story a little shorter, I will just say that he (Terry was his name) became my personal guide for the day, up hill and down dale.
I walked when I could, and when I couldn’t, he pushed me. He took me to the Cavern, which is now just a pile of rubble and the new Cavern, a replica of the original, plus the art college where John Lennon studied, the magistrate’s court and the Hard Day’s Night hotel (that’s where I got my souvenir).
We also went to a beautiful church. Inside, in neon lights, it read ‘I felt you and I knew you loved me’. What beautiful words.
Terry is a keen photographer and has e-mailed me the ’photos he took that day. What a sweetheart.
I stayed overnight in an okay-ish hotel, and for both dinner and breakfast I was invited to sit with others who were on the coach trip. The next day we went to Salford Quays. I don’t want to offend anyone who lives there, but it’s a kind of poor man’s Canary Wharf.
Anyway, two people from the coach party pushed me to the Imperial War museum, where a little time was passed. We parted company and I sat outside the Café Rouge with a glass of wine and read my book — A time to Dance, by Melvyn Bragg. Absorbed in the story and oblivious of the time, my heart skipped a beat when I realised I had about five minutes to get back to the coach. Oh, oh, where is the coach? Whizzing as quickly as possible in the opposite direction to the one my brain told me to go — which is usually a good idea — and with the help of a random stranger, I got there in the nick of time.
On the 26th Chris started his work experience. He’s doing it where he’s studying, at Bishop Burton College, about three miles from home. The highlight for him was the European Pony Championships. I went most days as I enjoy the show jumping.
Well, it’s the end of the month and health-wise it has not been very good. David’s back problems have been quite severe, plus other added health problems, and I am having more hypos than I should. The SMS is playing up more, probably due to feeling stressed about David’s state of health.
August 2010
Apart from all the hospital appointments on the calendar, the only thing of note would be Chris and I going to Brighton to ‘tortoise sit’ for Claire, as she was going to Florida. We had a great time, but I would have preferred Florida.
Anyway, my free bus pass — including companion — came in very handy. We were up and about almost every day. One day I decided to take Chris to Hastings (1066 and all that). It was a hideously long journey on the bus.
As it happened, we didn’t actually get there as I wanted to stop at an adjacent resort to take ‘photos of some of work the infamous graffiti artist Banksy had done the night before. Claire is a fan of his ‘work’. By the time we had taken the ’photos and had encountered more than my usual share of weirdos, we decided to go back to Brighton. We opted for the train as I didn’t think my back would stand another long bus journey.
Another ill-fated journey was the day we went to Fulham, a suburb of London. Chris wanted to see the football team in cup action that night. We left Brighton at 10am in the pouring rain and got a train to London (still raining) a bus to Fulham (still raining). We eventually found the ground, which was in the middle of a housing estate bordering the Thames.
He collected his ticket and I asked if there was a coffee bar within the stadium where I could wait during the match. “Yes, but it’s closed”, came the unhelpful reply. As it was only about 3 o’clock and still raining, and it was an evening match, where were we to go?
Apparently if we walked alongside the Thames, we would find a bar. Chris pushed me the mile or so to the said bar, only to find there was no ramp, and we had to find a way to the other side to get in. By this time we were so cold and wet I could have cried. Having made one drink last as long as we possibly could, we found there was a pizza place just across the road. So off we went, and yummy it was too.
Not too long now before kick off, but where was I to go? Chris pushed me back to the high street, and left me outside a Starbucks. He had to run all the way back. The rain had not let up for a moment, but I couldn’t wait for a hot coffee and somewhere warm to sit, but no! The lights were on, but the door was locked, so I propelled myself — which is not easy when it’s wet — and eventually saw a bar across the road. I sat with a glass of red and read my book.
When I got the long awaited text from Chris, I couldn’t wait to meet him. Once outside the bar I saw the steep slope at both sides of the road. Despite the fact it was a crossing place I knew I would not be able to get up enough speed to get me onto the pavement at the other side. By this point my back was in spasm as I had sat for so long and I was becoming more anxious — oh, and by the way, it was still raining.
At this point my luck changed. Out of the blue, a woman asked if I needed any help. I asked if she would get me across the road. Not only did she do that, but she pushed me back to Starbucks, where Chris was standing, shivering.
She didn’t know which bus would get us back to Victoria station and neither did we. Without a moment’s hesitation she offered to drive us there. It was a short journey to her house, but a bit difficult to get my wheelchair in her car already-overloaded car, but between them, they managed it. If she ever reads this I would like to say a big thank you to her.
Unfortunately, we missed our train, but caught the next (last) one. It stopped at every station, but we eventually reached Brighton, caught a taxi and arrived in one piece at Claire’s at 2.30am, and it was still bloody well raining. It probably goes without saying that I was fit for nothing the following day. In fact I stayed in my pyjamas and watched TV.
During the time we were there, my SMS was not too bad — perhaps because I was rather generous with both diazepam and gabapentin!
September 2010
Only one fun time this month was when I went to see the Freedom Festival in Hull. (Home of William Wilberforce, abolition of slavery and all that). It was also a celebration of the end of the round the world clipper boat race.
There were so many people! I had to spend most of the time sitting in my wheelchair, for fear of falling. Despite the hustle and bustle it was a fab event, ending with a firework display, which Hull should be proud to have organised.
I had an appointment with my diabetic consultant, which I had to cancel. I was quite relieved, as I have had so many hypos. I am just hoping when I next see him, my control will be a bit better. I am not putting any blame on David for the hypos, but his health is poor, and he is so down. I think the stress of it all is partly to blame as it adds to my poor diabetic control.
Most people think physical exercise is the only thing which affects control, but emotional stress is just as effective, if not more so, as one is conscious of the former. Looking back over the last few months, I remember how it would be almost like a light hearted competition as to which one of us was suffering the most. The joke has run out of steam now. Fortunately, Mike came up to watch the Ryder Cup, so that lifted David’s spirits a bit, especially as Europe beat in the USA in a thrilling climax (apparently).
Chris is back at college for his final year. Fingers crossed…
October 2010
David and I went to a local pub to see an R&B band. They were really good, but I can’t remember the last time I came home with my ears ringing (well worth it though).
I attended a meeting at Hull University, with a view to periodically sitting on a panel to interview social worker applicants. Sitting next to one of my PAs felt a bit strange. She already sits on a panel, and was attending this meeting as a matter of courtesy.
Chris and I went to one of my niece’s 18th birthday party. David was still suffering with his back, and so had to stay at home. I thoroughly enjoyed the evening. Unfortunately, Chris had not eaten all day and consequently, due to too much alcohol, had to be put to bed by his peers who were almost as drunk as him. Meanwhile, I enjoyed the party, and just kept popping in to check he was still alive!
We drove back along the North Sea coast road between Filey and Bridlington the following morning. The sun was shining, and I just had to stop to look around — truly beautiful.
Quite often on a Saturday I catch the local bus into Beverley town centre for the market. It stops wherever the driver sees someone put out their hand. One particular Saturday I caught it with a neighbour. Neither of us had much shopping to do, so we mooched around together.
We just missed the bus home, so decided to walk. All was fine until the following day. I could barely move. I face a problem here! Do I do something, and perhaps suffer the consequences the following day, or not do it in the first place? Those of you who know me will know my choice is the former.
As I said earlier in the year, one of my brothers, Simon, has moved oop north from London. We have started going to a local pub to sing karaoke on a Thursday night. I don’t go every week, as I am sometimes too tired, but when I do, we have lots of fun.
November 2010
Simon’s wife, Janet, loves live music, and the two of us went to a folk club to see Flossie. I have seen her two or three times in the past, but it was a first for Janet. Thankfully she enjoyed it as much as I did.
David and I met up for coffee with our estranged daughter, Eloise. She has just finished her BTech in retail at college. She is still very keen to be a clothes designer, but it’s a difficult time as jobs of any kind are hard to find, so all we can do is keep our fingers crossed for her.
I went to the theatre to see ‘Teachers’ with Joyce, my step mum, and a few friends, and then for a meal afterwards. I was fine until Joyce and I got to the theatre. As we entered I froze. I had taken my walker as there was very little walking to be done, and I was not alone. It felt like an hour had passed before Joyce realised I was not behind her. In truth it was about a minute. I was shaking and had to hold her arm to enable me to walk. I found a seat, took 10mg of diazepam and washed it down with a glass of wine.
Within a short time I was fine. But as usual, the reason for the anxiety was a mystery. The rest of the evening passed by uneventfully.
David and I have been out to eat a couple of times with family and friends. Good times.
Here’s a moment not to treasure when my mind and body refused to work in perfect harmony. David’s back was playing up — again — so I thought he would appreciate his meal in the living room. As I started to walk from the kitchen with his meal on a tray, the plate began to slide... Instead of trying to straighten the tray with my hands, my legs decided to do their own thing and keep up with the tray. A few moments later I had fallen onto a sofa, and the tray, condiments, knife and fork, and of course the meal flew up in the air. It’s debatable who discovered toast almost always falls jam side down, but whoever it was, was right. Only on this occasion it was shepherd’s pie. All I can say is a) thankfully I was not injured and b) the dog did a good job cleaning it up.
December 2010
I guess the most notable thing to have happened this month is my visit to Paris. I was invited to a conference representing SMS. Two organisations — Eurodis (Europe) and NORD (National Organisation for Rare Diseases) from the USA — have got together in an attempt to establish a global online patient community for rare diseases.
They have two organisations up and running at the moment, and it’s an exciting prospect. I would love to say that it was uneventful, but as you know my life is never that. The journey was fine, and I arrived at the hotel, but why did my room have to be the furthest one from the lift?
The first evening, a few of us met up for a meal, which was fun. There are so many rare conditions out there. If you have SMS, don’t think you are special! There are rare conditions out there, which seem to be worse than ours. It was an eye-opener.
The following day we all attended the conference. I felt a bit sad that I was the only representative for SMS. Some of the other conditions had four or five representatives. We broke for lunch, only for me to discover my insulin pen had died. I always take a couple of syringes if I go away, just in case. So someone offered to take me back to the hotel — well, they would have to as I have no sense of direction. I could have ended up at the Eiffel Tower!
Anyway, objective achieved and back to lunch, only to find the afternoon session had started. We were told we could take any surplus food away, as it would be thrown out, so I took the Camembert (big mistake).
Most people were going home that evening, but I had booked an extra night, as I didn’t think I could manage 16 hours’ travel and a full day conference in thirty-something hours. I returned to the hotel — obviously not on my own — and after my evening meal began to feel a bit stiff.
I spent the evening in my room — with the Camembert, and it’s overpowering smell. Despite it being December, I opened the window and the cheese sat outside.
As it happens, I barely slept that night as my back was jumping about, and of course I became quite anxious. Even extra diazepam didn’t help. I got up at 6am and could hardly walk. There was no way I could have got into the shower, so I again had extra diazepam and waited until it began to take effect. I managed to get hold of the shower head, and washed my hair (well, that’s the only bit people can see).
By the time I had got ready and my bag packed, it was nearly 9am — almost three hours! Although in the wheelchair, it took an age to get to the lift, and I was hurting. I managed to get into the breakfast room, but it proved an impossibility to balance a tray and get anything. I asked a member of staff if she would get me a cup of tea, and I had to hold it in both hands, as I was shaking so much. I felt people were looking at me, but even if they were, it would have been out of concern.
I asked for another drink to take to my room, and with only one hand to propel myself managed the marathon run, aka journey, from breakfast room to my room. I checked out at 10am and sat in the reception area.
I had intended to go to the Louvre, but at that time, all I wanted was to go home. Eurostar was not due to leave until 5.15pm, so what was I to do until then? Thinking hat on? Extra diazepam has not helped very much, so why not try an extra gabapentin — with a glass of red wine. Fab! It worked, and I was at the Louvre before lunchtime, and a jolly good time I had too.
The journey back to the UK was fine but then things stated to go wrong. I am going to keep this brief. At Kings Cross station I saw my 7.30pm train to Hull was cancelled, and I had to use a different train company. I got on the train, which was also delayed. I had a bit of a bust up with the guard, as I was in a first class carriage. I managed to talk him round. Then the train broke down. I arrived at the connecting station only to find the next train was at 7am the following morning.
However, they organised taxis for those of us who were left standing on the station, and I arrived home at 1.30am. Oh! I forgot about the Camembert. I had left it as well concealed as possible in my bag, which was on top of the wheelchair — and nowhere near me. I don’t suppose anyone knew I was the owner of either the ‘smell’ or the chair.
Apart from the cheese, the other thing I brought back was the ’flu. Having gone to bed Sunday, I didn’t get up until Tuesday. My blood sugars were consistently high, despite not eating. It was Saturday before I got dressed. Having a generous nature, I gave it to David just in time for Christmas. We had been invited to my brother Martin’s for Christmas dinner, but Chris and I had to leave David alone on the sofa. We were both still feeling very ropey a few days later on our 30th wedding anniversary, so we settled for a take away.
The only highlight on New Year’s Eve was when at midnight I thought it would be a good idea to light a firework — a left over rocket from a Bonfire Night some years before. I pushed it into a plant pot just outside the door and, in pitch darkness, I used a match to light it. After a lot of noise, there was a big bang and I fell over — I didn’t realise the rocket would stick in the soil! And that is how 2010 ended, not with a whimper but a bang.
January 2011
Happy New Year to one and all! Not much of note to tell you about this month, apart from the incident at the supermarket. I use my wheelchair as it is faster than pushing a trolley. I was with my PA and when we finished the shopping I propelled myself back to the car. When I got out of the chair and began to fold it up, it sort of fell sideways.
I saw a nut on the back seat of the car, which obviously belonged to the wheelchair, and I attempted to fix it. My anxiety levels rose, and by the time I had driven the three minute journey home, I needed help getting out of the car and into the house.
I was too anxious to push the chair, as in my head it would collapse and I would end up falling. Having got inside and while sitting on a dining chair, David put the nut back on and all was well with the chair - but not with me. I was anxious and quite rigid for the next few hours. It’s so infuriating to realise something of no real significance can make such an impact, and there is absolutely nothing I can do about it!
I have seen my diabetic consultant and he suggested I try using an insulin pump as I am still having too many hypos. I have Googled different pumps, hoping to find one which indicates when ones blood sugar is low. Perhaps such a thing does not exist? However, I am sure we will discuss it more when I next see him.
February 2011
I saw my neurologist. I think he was impressed that I walked in pushing my chair. I told him I am self-medicating ie, taking extra diazepam or gabapentin when needed and he was fine with that. I know of others who do the same, but they tend to take extra when they are going out or doing more physical things than usual. I tend to need extra because of anxiety.
If you have got this far, you will remember I attended a meeting at Hull University last October with regard to sitting on a panel to interview candidates doing either a BA or MA in social work. I have been on the panel twice this month and have thoroughly enjoyed it. I am now officially on their books, and look forward to future sessions.
Chris was in a dressage competition this month. He was riding his favourite horse, Kate. Eloise joined us. She is working for the Echo charity and seems to be enjoying it. Chris looked fab, as did Kate. It started well, but after about three minutes Kate decided she would rather gallop than canter. Despite the fact that Chris was retired, he did well to stay on and ride her along the walls to stop her.
Thanks to the frost, we have lost lots of plants, as have a lot of people. Roll on the spring when I can begin to replace some of them.
March 2011
We took Chris to Moreton Morrell at Warwick College, where he is hoping to do a degree in equine science, for an interview. Everything went well and he seemed impressed with the college,
I have been to a gig and the theatre this month, so at least I have had my music fix. As always, my head goes into anxiety mode before leaving home. I have also done another couple of stints at the university.
I went to Bruges with my brother Steve. It was the last of the two-for-one offers which cover the winter months and it was also my birthday. Our first argument began at the end of the by-pass, (about four miles from home). As we always have differing views on things, arguments are abundant. They always end in a stalemate as neither of us will back down, but it’s never a problem as I think we both secretly enjoy it.
The weather was really good, and in between arguments we had a good time. We saw areas we had not seen before, which was lovely. It’s a nice place to cafe hop and people watch. The problem was that I had left both my credit and debit cards at home, and only had a few Euros.
When we got back on the ferry, we watched the entertainment and Steve went to the casino. I took my book and went to the piano bar. About 11.30pm we got chatting to a guy who was kind enough to buy me a cocktail as I only had 30 minutes left of my birthday. There were no SMS incidents to report.
We got home Friday morning and my sister Claire, who had been ‘up north’ took me back with her to Brighton on the Sunday. The pair of shorts I took with me did not come out of the bag. Perhaps I was being a bit optimistic to think we may have a day when it would be warm enough to wear them.
Of the nine days I was there, we went to different places which served scones with jam and clotted cream - yum! We also went to the Isle of White. It was a Sunday and everywhere was closed apart from the area known as the Needles. Eventually we found a pub that was open and serving food. After three courses we were all sated and ready to carry on driving around an almost-deserted island.
Apart from the SMS playing up on an almost daily basis, I had a good time with Claire et al. Oh, I almost forgot - one day Claire asked what I wanted to do. I told her I was going into town - on my own (might as well use my bus pass!). I was feeling okay and made my way to the promenade. I had to sit in my chair to get down the slope, but why I stayed sitting in it, heaven only knows.
As I felt okay. I ended up at the West Pier and had a coffee. I decided I would push my chair back, but no, my back/head decided it didn’t want to obey my thoughts. By hook or by crook I managed to get back to the bus - after almost being run over by numerous cars (but to be honest I didn’t give a damn as my back was in spasm).
Anyway I did manage to get back and Claire met me at the bus stop. Feeling suitably upset/embarrassed and in pain, we both decided the best thing to do was open a bottle of wine and drown our collective sorrows.
After nine days with Claire I got the train home. David had got me some flowers with a note attached. He also cooked our evening meal!!! Good heavens, what has he been up to? Whatever it was, flowers and food equals forgiveness. Lol. Anyway, just as one thinks life has dealt enough blows, Chris has now been diagnosed with Aspergers Syndrome...
April 2011
We had our annual committee meeting. The longest ever: it started at 2pm and didn’t finish until almost 5pm. Two things you may be interested in are: 1) We have decided to go pc, and change the name from Stiff Man Syndrome to Stiff Person Syndrome. My vote was under protest; 2) We have now got committee member’s photos on the site (look on ‘About’). Anyway, there is nothing of note SMS, sorry SPS, to tell you about apart from John McFall joining us as Technical Officer. He’s a bit of a whiz on computers and things and has taken on a major responsibility for getting us into the 21st century, especially with the website and forum. Welcome aboard John!
Still having good and bad days/hours, and still the hypos. The only good thing about having a hypo is that I can eat Galaxy roasted & caramelised hazelnut. I am so into it at the moment that I will leave it there and go and have a little nibble. PS. If anyone wants to send me some, then it’s fine by me.
May 2011
Since it was agreed I could self-medicate, through trial and error I have found gabapentin seems to work more quickly/efficiently than diazepam. I don’t need the extra boost every day, but it’s good to know I have the option.
No doctor or hospital appointments for me this month! In fact, I think my last appointment was in February, which must be pretty nearly a record for me.
A couple of amusing incidents to mention: Chris was in a competition at college and told me the evening before that he needed his light tan deer skin gloves (not leopard skin pill box hat, which will be understood only by a Bob Dylan fan). Of course, the gloves needed washing. No problem with that, but drying them was a different story. After every avenue was explored, I decided to put them in the microwave. Not a clever idea, as when they came out, one was half its original size, rock hard and burnt, resembling something I may well have cooked.
The next incident was when I decided to photograph one of the goldfish in the pond, as it was suffering with white lumps on its side. So, armed with a camera, I knelt down to take the pics, at which point my right foot went into spasm. Fortunately I had the camera strap around my wrist, but as I shot forward, the camera fell into the pond. I was saved from the same fate as the camera by Carol, one of my PAs, who grabbed me just in time. Shaken by this incident, I needed help to get back into the house. I have never had a spasm in my right foot before! Sadly the goldfish was on its way to meet its maker. Thankfully, I am still alive to tell the tail, sorry, tale.
Apart from the inevitable hypos and stiff times, this month has not been too bad.
June 2011
I met up with Linda, an old school friend, at a concert. We said we would stay in touch, and surprisingly we have. We went for a meal and talked endlessly about the things we used to do and the fun we had. How very different to today’s kids.
I was in a very anxious state beforehand. David drove me, and I had to hold on to him and my walker to get inside the restaurant. I had taken an extra gabapentin before I went out, but it didn’t seem to help. I was the first to arrive, and ordered a vodka while trying to appear ‘normal’. My hands were shaking, and I tried to sip it, but really I wanted to gulp it down.
As soon as Linda walked in and sat down my anxiety quite quickly subsided. After a very nice meal we went to the karaoke bar (only about 50 yards away). The usual crowd were in, including my brother Simon. All in all we had a fab night (after the anxiety had gone).
I have wanted to see the Trooping the Colour for a long time, so my sister Claire and I decided to go, and we agreed to meet. I knew which buses to use to get me from the station to the Mall, but had not anticipated what a massive event it is. It seemed as though the buses were going everywhere but the Mall. ’Phone calls from Claire every five minuets didn’t help. Eventually, I got off at Trafalgar Square.
As I was crossing the road, my ’phone rang again. “Where are you?”. “At the crossing”. And so the conversation went on - until we bumped into each other on a crossing. As we were late, Claire ran while pushing me. As if all that had happened wasn’t bad enough, try sitting in a wheelchair 10 deep behind others. Liz needed a plan!
I saw the police were selling programmes, so I told one of them I would buy the said programme if he could get me to the front. Thank you Mr Policeman! We had a front row view of the Royal family as they went to Horse Guards Parade. With an hour to wait until they came back, we crossed the road and wandered down to Buckingham Palace. With a bit of gentle nudging, and some help from the BBC cameramen, we managed get snuggled up against the barriers. Yet again we had a birds eye view of all the Royals. Once they were in the Palace grounds, the police formed a row across the road, and let the public walk behind them - starting at the other end of the Mall. Anyway some bright spark lifted my wheelchair over the barriers and then, with help, lifted me over too. Claire climbed over, followed by many others.
We got to the fountain and started chatting to four young guys. As soon as the royals came out on to the balcony, one of the guys lifted me up on to the edge of the fountain - how sweet of him. Everyone sang God Save the Queen, which was a moment to feel proud to be British. So many thousands of people, but to my knowledge there was no trouble (very different from going to a football match, with a few hundred people, and a lot of fighting).
As usual, we have had a visit from David’s brother, Mike. I feel so sorry for David, as he walks round the course with Mike, but is unable to play. It seems almost every joint in his body hurts. He is seeing a consultant next month, so perhaps we can find out what the problem is.
My anxiety levels were not too bad when I went with my brother Simon to see him perform in a semi-final karaoke competition. Sadly, he didn’t win, although everyone said he was very good.
I have been helping my brother, Martin, with some decorating. When I am having a good day, and there is someone with me, I get up to all sorts of things. Anyway, as you can see I have had a very busy time of it this month - long may it continue.
July 2011
My life is really quite repetitious, as I have spent yet another week with my sister Claire. She came up for a long weekend and took me back with her. As bad as it sounds, the fact there were no kids with us on the journey was good. As parents know, conversation has to be a bit limited, and we have to listen to the ‘wrong type’ of music.
We had our usual fun time together, although she wore me out as we re-potted almost every plant in her yard and spent two days clearing out her garage, which required two trips to the tip.
We did, of course, find time on more than one occasion to go to the garden centre in Ditchling for afternoon tea. Yum, oh! so yum.
Claire had asked if I would house, cat and tortoise sit in August while they were on holiday, as I did last year. The problem I felt was that as Chris had made other plans, I would be on my own. I had various concerns - what if I had a hypo? What if the SMS played up? What if the weather was bad, and perhaps most importantly I would have nobody to talk to?
That last comment reminds me that while I was there and in the local Co-op, I met one of the Beverley Sisters (most of you will be too young to know who I am talking about - it’s a little old for me too. They were three sisters who were popular in the late 50s, early 60s music charts).
As always with me, I forced her into having a chat. She was charming, and she found it quite amusing when I told her I was from Beverley and staying with my sister. Get it? Beverly, sister?
My brother David and his son Josh came up to Brighton the following weekend. Even more laughs, apart from the endless talk of motorbikes - they are both keen bikers. David delivered me home safely, and after a quick cuppa he set off home to North Yorkshire. I just hope he didn’t ache as much as I did. Five hours sitting in a car made my backache.
Some time ago I decided it might be good for members living in close proximity to meet up. The first region I decided upon was Bristol. After three changes on the train via Birmingham, I arrived at Bristol. One of the members picked me up and we all met up for lunch. Everyone had a good time. Surprisingly, I didn’t suffer any anxiety, rigidity or spasms - very odd, as I was meeting people I didn’t really know. Anyway, it was chat, chat and more chat. Everyone exchanged ’phone numbers. Hopefully they will stay in touch.
One of the members offered to put me up for the night, which I was very happy to accept. She took me on a sightseeing tour around the city. Later, we sat in her garden with a bottle of wine. I don’t know if it was the day catching up with me, but I was quite rigid while trying to walk down the garden. Having got there, we talked about her beautiful plants, which cuttings I could take home, and of course diabetes and SMS (the latter being the shortest part of the conversation).
The following morning I took her up a cuppa - only three-quarters full, as I didn’t want drips on the carpet. Of course, she understood why the mug was not full. Later that morning she said how much she had enjoyed having someone stay who was diabetic and had SMS. Apart from being a consultant rheumatologist, she is an artist too. So after a lovely couple of days I took the train home.
My journey was via London. Despite booking as a person with a disability, the ticket required me to use the underground, something I have not done for years. I felt OK, so let’s go for it! I got into the lift, and was surprised how short a journey it was. Silly me - I hadn’t realised it only took me down one floor. Still feeling ok, but with a bit of trepidation, I looked at the escalator. Only a nanosecond passed before a kind passer-by helped me traverse the aforesaid escalator. Having got to the bottom, I thought I was there. But no, next was a staircase! Again, a moment later, a guy said: ”I’ll take your chair down for you”. He even waited until I got to the bottom. As I keep saying, people really are so nice. I have to admit that with my total lack of direction, I had to keep asking which tube line I needed for King’s Cross.
Having changed tube trains a couple of times because of ‘works’, I missed my connecting train. No problem, I was able to get the next one. I got on, obviously not realising I was on a 1st class carriage! The guard was very sympathetic to the problems I had had and let me stay where I was - nice. How unusual that I hadn’t suffered any anxiety throughout the visit.
I have seen my diabetic consultant this month. Nothing new to report.
August 2011
Not much to say this month. Chris went to the ‘Bloodstock’ heavy metal festival; I am still having too many hypos; and I have been the subject of a case study, re-SMS/SPS. I feel quite sad about using a three letter abbreviation (tla) - or in this case tla x2 to include SPS which is now so widely used. The study was done by one of the group members for part of her MA.
We went to my Goddaughter’s wedding, a very grand affair at Sledmere House. Fortunately, the weather was as wonderful as the wedding. I have put one or two pics on our Facebook page.
September 2011
Does everyone feel empty when their last child flees the nest? Chris has left to start his degree in equine science at Warwick Uni.
I have done my first-ever car-boot sale. I made £106 (just shows what rubbish I have kept over the years).
Brother-in-law Mike and his wife Jane came up for a long weekend. David and Mike did guy stuff, while Jane and I did the girly things. In fact, I think we only met up when getting ready to eat out.
October 2011
Quite a busy start this month. We had a committee meeting on the 1st. One of the members stayed overnight while on Sunday morning David was working at the Pro’s shop at Beverley golf course (an ad hoc arrangement, which works out well), which meant I had to take the member to the train station.
The only reason I am saying this is because I was going to visit my sister the following day and I hadn’t done any packing. As per usual I got quite stressed. What to take? Have I got all my meds, plus a bit extra? Don’t forget the ticket, etc. All of which meant no Sunday dinner in this house! We ended up having a take-away because by the evening I was really quite stiff and couldn’t stand to cook.
As for going to Claire’s, once again I opted for the coach because I was staying nine days. Why? Because I can’t manage the train when I have a suitcase, as I have to cross three busy roads in London to get a bus to go across town to another station to get the connection to Brighton. With the coach there is just one change at Victoria station and I can manage the walk with the suitcase on the wheelchair. I do get a few strange looks, even when pushing it without a suitcase on it. It doesn’t bother me — they don’t know what my syndrome is and what it entails.
The only problem with the coach is that it’s a nine-hour journey, as opposed to three on the train…
As usual Claire had jobs lined up for me. So, if I wasn’t dead-heading plants, I was putting the rubbish stuff Claire stores on her TV planner onto DVDs (she is more of a technophobe than I am, so it is said).
We still managed to get out and about as the weather was so good. Despite Emily (my niece) begging me to stay, I had to get back as I had an appointment with my neurologist the following day. I did have one bad day — what I mean is one day that was ‘badder’ than the norm. I was up early, and watched a film from the planner, and then I watched another. Before I knew it, it was mid-afternoon. Because I had been sitting for so long, I could barley walk. My back was jerking and I was very stiff. Not a good combination. There was no way I could loosen up, so I took more medication and a glass of wine, and watched another film. I couldn’t have read a book as I was too shaky. Anyway, it was self-inflicted, so I don’t deserve any sympathy.
November 2011
I’ve said it before and it’s time to say it again — if you have got this far reading my story, I applaud you for your interest and patience.
Last December I attended a conference for rare diseases in Paris. Because the UK part of the train journey home took so long (details told at the time) I received a 1st class return ticket to London by way of apology. I began my freebie journey to see sister Claire one Saturday at 6.30am — so of course I was up at 4am because I need time to de-stress and check everything I had already checked last night! (I sometimes wonder if I have OCD too, hehe).
David drove me to the station and off I went. Alighting at Kings Cross, I sat in my wheelchair to cross the three busy roads to get the 73 bus to Victoria station, where I met Claire.
She had a list of places she wanted to see, so off we set. As we passed Buckingham Palace, we saw the changing of the guard. We have both seen it before, so trying to leave part way through was a bit of a challenge (I wonder how many people had wheelchair footplate height bruised ankles?).
We cut through one of the roads on the Mall, trying to find the first destination, the Stephen Wiltshire gallery. He is a guy with autism. He travels the world and even from a glance he can later paint the scene perfectly. Of course, Claire had an idea where it was. In other words, we were lost. I have to say being lost was really good fun. We found ourselves asking a policeman a) directions – he didn’t know, and b) What are these buildings around us? Apparently, we were standing behind Prince Charles’s house, sorry, residence.
The policeman had a rifle so naturally I asked if I could hold it. (Claire could have taken a photo). Thank heavens he said “No”, or I may have ended up shooting someone (I would, of course, have blamed it on the startle response). Footnote: When I was normal, David and I belonged to a gun club. Small fry, as we only used 2.2 rifles.
Back to the friendly policeman: When we asked him what the building to his left was, he replied: “I couldn’t tell you”. We were intrigued, was it MI5, perhaps MI6? “Why can’t you tell us”. I asked. “Because I don’t know” was his reply. We were all hooting with laughter.
While we were chatting I had been standing only to find I had stiffened up and couldn’t walk. Claire had to push me until I had loosed up a bit. We managed to find the gallery and yep, I couldn’t get upstairs, even with a handrail, so I spent quite a while looking interested at the work on show on the ground floor.
The next stop was the Victoria and Albert Museum, as Claire wanted to see the post-modern exhibition. The museums in London are free, but there was a £12 charge for this exhibition, but as I am disabled there was no charge, and Claire went in as my carer. To be honest they should have paid us to go in — we couldn’t wait to get out. It has given me a few ideas though. I am going to put a packet of fags on top of a mug of coffee, and call it ‘Liz’s union break’ and submit it next year. To be fair, it could not be worse than what we had seen.
Anyway I enjoyed the sculptures as they had a lot of works by Rodin. Unfortunately, two of my favourite pieces, ‘The Kiss’ and ‘The Thinker’ were not there. One of the staff told us to look in the Tate. We Googled it that evening, the member of staff was wrong, unfortunately.
The weather for our trip was fab, so we sat in Hyde Park drinking coffee, with our coats off, overlooking people rowing on the lake. After eating we walked/pushed the wheelchair and headed off to Soho, ending the evening in Covent Garden. We could have stayed there listening to the live music for much longer than we had time for.
And then it was a bus trip to Victoria Station to get the train to Brighton. I had managed to walk from the bus, but once inside the station, we heard that the next train departing to Brighton was about to leave. I sat in the chair and Claire ran hell for leather to the train. (She told me later that she felt as if she had road rage, as she tried to dodge people in our way. To be honest, I can’t remember holding on to my chair with so much fear). We got to the platform and I put my finger on the button to open the door — it must have been firmly attached, as my wheelchair and I went along the platform beside the train. Obviously I removed the said finger and we were both laughing our heads off at yet another Liz/Claire incident. We caught the next train, which was only about a 10 min wait.
Although Claire had bought a return ticket, it didn’t occur to me that I hadn’t paid for one. Must have been my lucky day, as there was no guard on the train, and so we just walked off the platform at Brighton, trying to look as inconspicuous as possible.
We finally arrived home and, armed with a cup of tea, we headed up to bed. It had been a really fun day, but despite extra meds during the day, I realised how much of the time Claire had had to push me around. Yes, I would have done some of the things we did, if I’d been alone, but I would have needed more help from passers-by. I think it has made me realise my condition is getting worse. Anyway, not to worry, tomorrow is another day — and it may be better!
Sunday morning, and I was up about 6.30. Claire crawled out of bed at 10am. We were both showered, ready and out by 10.30, heading back to London. I wanted to go to Carnaby Street. The last time I was there, there were stalls and it was still the place to go. Sadly, now it’s just like any other street, with the high street shops. A real disappointment.
After a quick stop for coffee, aka, a sit down for me (the wheelchair is ok when propelling or being pushed, but not as comfortable as a chair to relax in), we got the bus to Camden market where there were lots of stalls, loads of haggling and even more laughing. We had coffee overlooking the lock.
But we lost track of time and it became a rush to get me to Kings Cross and the train home. Fortunately, although we needed different buses, they were both at the same stop. Why oh why did Claire’s bus have to come first? I was absolutely fine until she got on her bus. Then I just froze. My bus pulled up within seconds, but it was a bus length away to walk, and I couldn’t do it! Claire could see me, but could do nothing about it. With my bus pass between my teeth, I ‘grabbed’ a couple of random girls and asked if they would help me to my bus. (The driver had seen me, and waited).
With help from numerous people, I managed to get on. Although the bus was full, people moved to accommodate me. It was amusing when a woman, who very proudly told me she was in her eighties, offered her help (she gave me step-by-step instructions when to ring the bell for my stop). By the time I got there, I knew the driver would need to put down the ramp, but he didn’t, so a guy jumped off, ran to the front and told the driver. I don’t often feel embarrassed, but as people watched me (out of concern) I just wished the ground could have opened up and swallowed me. I felt so anxious; I wasn’t even sure which way to go, despite the name of the station being right in front of me.
Anyway, the journey home was uneventful, and David picked me up from the train. Home with David is where I want to be now = safe.
I have done one session interviewing at Hull Uni. Very enjoyable. The only other thing of note was the evening I went to see the switching on of the lights at Beverley’s North Bar. Beverley is a market town and the Bar is the only remaining ancient entrance to the town from the days when it had walls. The old Bar hasn’t been illuminated since Victorian times. David didn’t want to go, so off I went with wheelchair and car. Having arrived, my first encounter was with an ‘official’ and it was about parking. He was sorely lacking in Christmas spirit, so I parked more or less where he said I could not!
As for my mobility, I was okayish, but needed to sit in my chair. Having traversed the wobbly, cobbly pavements, I decided to take my life in my hands and propel along the road. There were already a few hundred people there so I decided to get out of the chair and lean against a car to take pictures. I got out my ’phone to record the event. The countdown began, and my camera was focused on the Bar, ready for action. All I heard was cheering and once that had died down, I was left wondering how I had missed whatever had happened. Where were the wondrous lights illuminating part of Beverley’s historic past?
I got back in the chair and made my way to the Bar. I asked this guy what had happened and what I had missed. Why, out of all the people there, did I have to ask the guy who had organised the event? After explaining it to me, I had to try and sound enthusiastic about what was really a non-event! There were two beams of light shining at the Bar, apparently, but you could hardly tell. Was it really anything to get excited about?
Anyway, I made my way back to the market place — still on the road, even though it had since been opened to traffic, it was more preferable than the pavements. As the evening had been so poor, I decided to look around to see if I could salvage anything from the evening before I headed home. No was the answer. There was a pub selling mulled wine (but I was driving) and mince pies (alas no, I am diabetic), so no joy there. So I drove around, taking photos before arriving home feeling a bit sorry for myself. That’s what November had to offer.
December 2011
So here we are at the end of the year. Hope you have all had a good one? For all sufferers, I hope it has been as good as possible.
One of my brothers, Simon, lives in a village near Beverley. He was in the pantomime Snow White playing ‘Bashful’. I have to say he is in no way, shape or form bashful. I’m not really into pantos, but one has to support the family. I drove to the village hall but there were no places to park within an SMS-sufferer’s walking distance, especially one who took her walker rather than wheelchair!
I eventually found a parking slot. Out of the car I jumped (sort of), and almost ran to the village hall –NOT. Instead, I sat trying to summon up the courage to get out of the car. After about 10 minutes I saw Simon’s family crossing the road, so why didn’t I, a) open the window to let them know I needed help or b) bip the horn so they would see me. Instead, I just froze. The clock was ticking and I knew I couldn’t just sit there. I eventually summoned up the courage and got out of the car. All fingers and thumbs, somehow I managed to get to the village hall, by which time I was shaky and sweaty (what a delightful combination). Once inside, and with family in sight, I managed to calm down. I thoroughly enjoyed the performance and had a chat with the director afterwards (many moons ago, we were both members of Beverley Theatre Company) and he invited me to go again the following evening, which was the last night. Full of bravado, I said I would.
Obviously my anxiety levels were much lower at this point, so much lower in fact, that I stopped by the village pond, manoeuvred myself to the passenger seat and took some photos. It was lit up, and looked so pretty. Brought back some lovely memories.
Saturday evening approached and, despite my day-long intention of going, by late afternoon the anxiety started to build up again. So I didn’t go, which was a pants decision, as my sister-in-law was going and, of course, it was the ‘last night party’. They can be so much fun but not for me...
I had an appointment with the diabetes specialist nurse for a discussion about being fitted with an insulin pump. So here’s hoping it won’t take too long to sort out — and that it’s suitable for me.
Off again on my trips, on yet another visit to Bruges with my brother Steve. The only difference on this occasion was that I slept on the top bunk. I was being kind, as I don’t have toiletry requirements during the night.
I felt sorry for those who had gone to Bruges for the winter fayre, as it was pants.
I may have said it before, but my brother and I tend to spend our evenings apart. He goes to the casino and I do whatever takes my fancy. I had been outside, or should I say on the deck, to have a cigarette. I came back and sat alone at a table. Within a few moments, three guys asked me to sit with them. They were all widowers, and I listened intently to their stories. One of the guys was quite tearful. I truly hope I said the right things.
I took the opportunity to give them an SMS business card — spreading awareness is my middle name.
Bizarrely, I arrived home to find an email from one of them, which was nothing, less than an invitation for a dalliance. Thank you, but no, I’m married, I replied. A couple of days later he wrote again: “Can we meet up for a coffee”. “No,” I wrote. I didn’t answer the next email. Have to say, though, it was a real morale booster, as he must have been at least 10 years my junior.
Christmas came and went, but what a surprise for our 31st anniversary (I always forget as there is too much going on). David had made a card and inside was a holiday to Rome. Not until my birthday in March, which gives me plenty of time to shop. On that happy note, it’s ’bye, ’bye to 2011.
January 2012
Happy New Year one and all! How strange it is that last month was so busy, but this one is so quiet. Apart from breast screening and an appointment with my diabetic consultant, not much else has happened. Oh yes it has, I have stopped smoking! Well kind of. I am using a battery operated thing. OK, it uses nicotine, but does not have any of the additives.
Keep a note of the following: We are having a new kitchen – don’t know why as I don’t like cooking. Perhaps I just wanted a new kitchen! So the guys came, and we talked about we wanted. We? David can only cook a grill-up, but when he does it’s much better than mine as he doesn’t burn everything. I always thought that when the smoke alarm in the hall goes off, it’s the equivalent of a dinner gong…
February 2012
The date for the kitchen is set and I can’t wait for the fitters to begin, so I (prematurely) dismantle it and put it in the garden. Mistake? Mmm, difficult to say as we ate a number of meals at my brother Martin’s, cooked by his wife Sue – yum, yum! Away from the kitchen saga,
I have worked at Hull Uni quite a lot this month. I always come away wishing I was young again. What would I have done? To be truthful, I would still have been a nurse. However, I still – like all of us, wish I was young again. As the fabulous Oscar Wilde said “Youth is wasted on the young”. Anyway, I digress. David and I went to a niece Emma’s 30th birthday party in Buckinghamshire. Fab night, food to die for, and I even had a ‘dance’ with a total stranger! Thank heavens we stopped before the DJ played one of the songs from ‘Dirty Dancing’ lol. February has been a busy month! Usual regular hypos, so what’s new?
March 2012
I’m still working at Hull Uni and David still works on an-hoc basis at the golf shop. David has set up a golf competition for the Charity. For details, please look on our web site. So, now I am 60. Yippee – can’t believe I am still on this earth. Going back, Peter Cook and Dudley Moore wrote “30 is a dangerous age”. Someone said 40 is the new 30. No it’s not. 50 – no big deal. 60, you become a pensioner. I think that means you are old.
The weekend before my birthday, my brother Martin and his wife Sue took me to London. We stayed with my niece, Dawn (Martin and Sue’s daughter). Over the weekend we went to the Ideal Home Exhibition at Earls Court, and to see The Mousetrap at St Martin’s Theatre. I had wanted to see it as it began the year I was born, and it was as good as I had hoped it would be. Divvy Liz didn’t take any cash, but as it was my 60th, the girl in the box office very kindly didn’t charge me for a programme. After the performance we waited at the stage door and I managed to get the programme signed by all the cast. Getting back to my niece was eventful as it was St Patrick’s Day. Every Irish person we saw was peed as a newt. Why not celebrate? It brought it home yet again that I was not able to join in – can’t dance in a wheelchair.
David’s golf competition to raise awareness and hopefully drag some funds into the charity is soon to start. Photos and interviews followed to publicise the event.
Anyway, for the moment the charity took a back seat. After a few beauty sessions(!) I packed my bags for a super holiday in Rome. David had booked a fabulous hotel and we had the most wonderful time. I have been to Rome before, but with David it was so special. We saw all the sights, the Colosseum, Vatican etc, and so much more. There were times when I could not walk so David got me some vodka, and hey bloody presto I could walk! I did a video for our Facebook page in front of the Trevie Fountain. There was only one day I could not function. You know what though, I could write about those days in Rome forever, describing every detail – but I won’t because it’s mine to remember.
April 2012
I went to Beverley Minster to see the passion play. My step-mum played Mary. Super – she even cried to order (she really should join the local theatre group). As the play went through the town quite slowly, I was able to keep up in my chair.
I have done my last ever car-boot sale. Everything we don’t use went, although I could not get rid of anything memorable! What didn’t sell I decided to take to a charity shop. Can someone tell me why I had to choose the day when hundreds of people where doing the Beverley run? The posts attached with ‘crime scene tape’ were not going to stop moi! So I waited for a gap and, as one appeared, I put my head down and managed to wheel across to the charity shop. It didn’t help when I was asked to take it to the back entrance (I may have said it before, but my sense of direction is non-existent). A member of staff somehow managed to squeeze in the car and showed me the way. I felt quite sorry for him lifting boxes out of the car. To be honest I felt a bit sorry for me as I could not help. Today was not good! People running around everywhere while I have to sit and watch someone unload my car.
I was doing some work in Chris’s room and had a severe hypo. The only good thing to come out of this is that David finished the cooking! Nothing else to report apart from the usual hypos and the usual anxiety, spasms and rigidity!
May 2012
We had our committee meeting. One of the members stayed over. Sadly it takes him a few days to recover from the journey.
Chris was coming home from uni in Warwick – why does nothing go smoothly? We got a call from him at 11.45pm to tell us his motorbike had broken down somewhere near Newark about 75 miles away. Because it was so late, David organised someone to pick up and store his bike and book him into a Premier Inn for the night (another small fortune down the drain). David drove down the next day with a borrowed trailer to collect Chris and his broken down bike. Turned out the engine had seized and needed an engine rebuild. Ouch.
I went to visit Claire for a few days. For the first time, I suffered a bit on the journey. I needed help on and off the trains. Nonetheless, when I got there, we had our usual fun.
June 2012
Well, what a strange month. Nothing to report. Very odd. Not even a hospital appointment.
July 2012
I don’t know if I have mentioned it, but I have cataracts in both eyes. The left one is the worst, and so I went for a pre-op assessment. I have to admit the thought of having it done is a bit scary. When I was at school I always wanted to wear glasses (for the life of me I have no idea why, perhaps that was an indication of the strange/crazy person I am). Now I do wear them, I can never find them. I have to tell anyone who reads this I will not have them on a necklace until I’m at least 90.
I have seen my diabetic consultant, and he seems quite happy (not about my disappearing glasses, obviously!).
I feel my anxiety and stiffness is getting worse. As a consequence, I often dip out of things at the last minute. My friend, Vanessa and I, were going to see ‘A Midsummer Night’s Dream’. I had to call her, not for the first time, that I just couldn’t make it.
August 2012
Last month’s entry was almost my last! David had gone to visit his brother, near London. Chris had gone partying. I took Ollie out, having checked my blood sugar first. I drove to an area called Beckside. We didn’t go very far as Ollie is almost 14, so he needs fairly short walks. As I propelled myself back toward the car, I felt strange. I could feel my head falling forwards and couldn’t understand why my wheelchair kept veering toward the beck. I remember someone asking if I needed help…the next thing I remember was waking up in an ambulance with a glucose infusion in my arm.
They told me they were taking me to Hull Royal Infirmary. I refused. They told me again but this time they also said if I didn’t comply they would ring the police! My first thought was ‘I can’t get arrested and have a criminal record, I run a charity!’ (sorry to my nearest and dearest for the charity being my first thought).
When I arrived at HRI, I found my brother Martin and his wife Sue waiting for me. After being told I was to be admitted you can guess my reaction ‑ I was in my brother’s car within 15 minutes! But where was Ollie? Apparently, the woman who found me and raised the alarm took him home – where her husband recognised him! He’s a golfer and had seen Ollie in the Pro’s shop several times with David. What a small world.
A busy night followed. Shopping, taking flowers to the couple who looked after Ollie and picking him up, and home to get meds (as Martin and Sue ordered me to stay overnight with them). We had a takeaway about 9.30pm. Understandably, I didn’t sleep very well. In fact, I lay on the bed listening to my MP3 player for hours. Sue drove me to pick up my car about 7.30 the next morning. I needed quite a bit of help as I was as stiff as a board. Having got home I breathed a sigh of relief. If it hadn’t been for the couple who rescued me (and Ollie) I may never have been ‘home’ again. I have to say a few tears were shed that day.
I had my cataract operation. The staff were fantastic. I had felt very apprehensive, but when I went into the theatre they gave me a sedative to help with the startle response. I had a cover my face and an oxygen tube underneath it. They told me not to talk, and believe it or not I didn’t, well not for about five minutes. It was then I asked when they would be starting. The reply was “We will be about 30 seconds and then we will have finished”. I am relating this to anyone having this op just to say I felt absolutely nothing. Although the eye patch was not very attractive!
I have been to stay with Claire – again. I’m sure she will start demanding rent soon, although as I usually pay for our regular trips to Ditchling for scones and coffee, she may let me off.
My friend Vanessa dropped me off at a shopping outlet while she visited her mum who is in a nursing home. I bought a cardigan without trying it on. It’s difficult when you feel stiff and are in a wheelchair. I also bought a few other things which I didn’t tell David about. When I arrived home I tried the on the cardigan. Oh no, it’s too small. David didn’t like it anyway. Not to worry, it can go back the next time, and I will see if they have a bigger one. What a busy month.
September 2012
We lost Ollie this month. If there is anything reassuring, it’s knowing he had a happy life with us. What a star! The best (friend) dog ever.
October 2012
A short visit to see Claire. The problem was the travelling. I went by train as usual, but I was so rigid and my back was in spasm for most of the journey. I needed help to get off the trains. I really believed I would be OK going home, but it was even worse. Claire took me to the station and I managed to get on the train to Victoria, but I needed help to get off. It’s only a matter of crossing the road to get to the bus, but I had to ask for help. Once on the bus I thought I would stand, as I wondered if sitting on the train for over an hour was the problem, despite having done it so many times before! It’s strange/weird the way the brain works. Part way through the bus journey I had to sit down.
When I arrived at King’s Cross three people had to lend a hand to get me off, one of whom was a woman about 10 years my senior. I held her arm so tightly I’m sure she would find a bruise later (she doesn’t know my address, so she can’t sue me – actually, I’m not sure if I even gave her a business card!).
It was pouring down, but once we got under cover I took my travel bag off the wheelchair and sat down. Once I got to my platform I was shattered and roasting hot. Fortunately, two guards were on the train. They could see the state I was in and bit by bit they got me on the train – 1st class to boot. They also radio-ed ahead to my next change asking for assistance.
When I got there, there was a ramp waiting for me and a guard to escort me to my home train. David met me at the station and I was so tired and stiff I took double medication and it wasn’t long before I was in bed.
I went for my eye check-up. Now my bad eye is my good eye and my old good eye is now my bad eye. The eye that is now my bad eye also has a cataract, but not quite bad enough to be operated on. Does that make any sense?. If not try The Times crossword!
Lots of other stuff, but nothing of importance except I have lost a small fortune this month. Two visits to the theatre and a trip to watch horse whispering, all paid for in advance, but too stiff to attend. A note to any former boyfriends, bet you’re glad we didn’t make it! I’m sure David would not really agree as he is the one who is stuck with me!
November 2012
Well, fortunately, I managed to see Beverley Theatre Company’s production of Habeas Corpus. My friend Vanessa picked me up. It was one of their best performances I have seen. I felt so happy that I didn’t have to drop out at the last minute.
Although I seem to be getting stiffer, it may be the weather, who knows? I wanted to go to the supermarket one morning. Not my cleverest idea as I was so stiff, but as usual my determination was in full swing. Having got out of the door, I had to sit in the wheelchair (there is a slope from the garden room to the ‘disabled friendly’ garden).
Just as I got to the gate, lo and behold, in came the postman. He got me to the car and even put the wheelchair on the back seat for me. Once I was sitting down, and after a few calming breaths, I drove to the supermarket. Unfortunately, I was still very stiff. I managed to get out of the car, but all I could do then was stand. I was looking for a member of staff to appear, but alas I couldn’t see anyone. So I waited until I saw a guy and asked if he could get my chair out, which he did. Obviously I told him I was waiting for a good looking man to help!
Shopping done, but I was still so stiff. The girl on the till told me she was going on her break and that she would help me back to the car. She put both my shopping and the wheelchair in the car. When I arrived home I was able to get the chair out. I sat in it along with the shopping. I used my mobile to ’phone David’. I asked him to open the door! He almost exploded when I told him what had happened. “I could have done the shopping. Why do you do these stupid things” etc etc. I think my reply was something like “It’s an adventure”.
We celebrated bonfire night at the golf club with Martin and Sue. Burgers and hot dogs, and afterwards the most wonderful fireworks display, provided by the Lions. So a happy night was had by all.
We had our usual meals out, but I don’t know if I have mentioned it before, but sitting on a dining chair for too long makes my back stiff and sometimes I suffer painful spasms. David suffers too. Five prolapsed discs is no fun for him. To add insult to injury, he has been told the pain clinic has closed due to NHS cut-backs. He is due an infusion early December and will not get it. What a wonderful Christmas it will be!!!
I was asked to do an interview for a student’s dissertation. He chose SPS as both his mum and aunt both suffer with this syndrome. He is based in Brighton. Although he offered to come to me, I said I would rather do it in Brighton. The reason for this decision was because I had to find out if I could do it! If it was like my last visit, then I would have felt this bloody syndrome was taking me further down the slippery slope. In fact I was OK.
Claire said we could use her house for the interview, a great help for Matthew, the student. He didn’t have to find a room at the university, and I didn’t have to travel (thanks Claire). My anxiety was about eight out of 10. I had to kneel in the bath to have a shower. No way could I stand. I needed Claire’s help to get up, out and dressed. She is a beauty therapist, and therefore did my make-up.
When Matthew arrived, I felt quite calm (must have used up my stress during the morning). I hope the video interview was OK. Time will tell! He has two other interviews to do, and when it’s finished we will be able to put it on our website.
I only stayed four days, but as per usual Claire had ‘work’ for me. That said and done, the rest of the time was fun. We sleep in the same bed, enjoy a cuppa tea and a chat before one of us falls asleep. During the night, apparently, I giggled a lot, bought a bed, chatted to the salesman and snored!
December 2012
My journey home was OK, thankfully. I suffered some anxiety but a (small) bottle of wine calmed me down. Despite the train changes and sips of the wine, I got back to Beverley in one piece. So, there we are, I can do it!.
January 2013
Well, here we go again with a Very Happy 2013 to all. Just to let you know that in 2014 my PA, Nicky, pressed the wrong button on my laptop and I lost almost everything, including my diary, so I am looking back at the 2013 calendar in the hope I can ‘re-write’ the events of the year.
Nothing unusual to report this month as I can’t understand some of the things I have written in Liz’s shorthand!
February 2013
Yet again not much to report apart from Uni, hypos, and spasms. One thing to say is that since I have been using an e-cig, my usual morning lower back spasms have stopped. (Only that one!).
March 2013
We went out for a meal with Martin and Sue. The weather was foul. As I got out of the car my hand slid along the top of the car and I fell backward and really whacked the back of my head. For my starter I had aspirin and water. Main course zilch and I was able to get out of dessert by telling them I was diabetic. They wanted to take me to A&E, (notice I didn’t say which hospital?). I may have had a pounding headache but I was still able to convince them I would rather my head chopped off than go there. Having got home I went to bed with more aspirin. Got up the next day and breakfast was a cuppa and aspirin. I could feel the lump on the back of my head which was disappointing because when I get a bruise I like to show it off, but I think shaving my head would have been a bit on the daft side.
April 2013
I got a ‘phone call from Hull Royal Infirmary asking me about an SPS patient on their ward. She was in pain and having spasms all the time. She read her medication sheet to me. I was quite shocked about the different meds and the amount she was taking. The nurse asked if I would visit her. I said I would and was told I could come at any time. The patient is a member of the support group, and when I went in she just cried and said thanks. I sat next to the bed and each time she went into spasm I held her hand or whichever part of her body where the pain was. She seemed to relax. I don’t think she screamed or cried while I was there. Don’t get me wrong, I am not claiming to be Mother Theresa, it’s more a case of a fellow sufferer instinctively knowing how to ‘be’. I had to leave to get home to cook an evening meal. On the way out the woman in the next bed asked if I could come back again as it was the longest time she had been quiet. I had a word with the nurse and asked if her meds could be looked at, she assured me she would. I went a couple of days later and she appeared to be much better.
The golf tournament ‘Order of merit’ David did last year has started again. The proceeds go to our charity.
May 2013
I spent a few days at Claire’s. (As I am writing this in 2014 I can’t remember what we did). In fact the only notable event was the day our new neighbours moved in. I was in the garden and decided to move the pots which were in the pond – you know what I am going to say next! Yes, I fell in head first. I kept my mouth closed to prevent a fish swimming into it. Don’t get me wrong I love fish, but I prefer them dead and battered. Once I managed to turn around one of the pots fell on top of me. Once I struggled out I was quite pleased as I still had my glasses and flip flops on. I held onto my walker and as I got to the door I cast off my jumper, belt and flip flops. Once inside I left my jeans in the garden room, vest top in the hall then managed to get to the bathroom to remove what was left before getting a shower. I think two showers and a ‘bath’ in one day is quite enough!
At the end of the month we went to Buckinghamshire. Staying with Mike (David’s brother who often descends on us, as he will again in a couple of weeks) and his wife Jane, for the wedding of our niece Emma. It was a super time for all. I bet you are the same – nothing to go to, and then get doubled up. Having gone for the wedding we missed a friend’s birthday bash. Oh well, not to worry. My best friend Vanessa is now 60, and about 50 of us celebrated at a super fish restaurant in Beverley. Yet again we all had a fab time.
One day I was on the ‘phone with a group member who is also diabetic. She asked if I was OK, of course I said yes. A little later she asked me to do a blood sugar, I told her again I was OK. The next thing I knew was I was on the floor with a policeman holding me down. I hadn’t noticed the ambulance crew. At that point David walked in. The policeman asked him if I was an aggressive person, David knew the problem and asked him to let go of me. As soon as he did I just relaxed. So it was a hypo and SPS in combination. The SPS part was being held down knowing I was not in control. (Look at the site, as it will explain about being in control). Everything else this month has been the usual hospital appointments etc.
July 2013
Early in the month I was driving back from a park in Hull. I had been talking to a couple of people and then got in the car, but I hadn’t tested my blood sugar before driving home. I felt a bit strange as I approached Beverley and I felt the warning signs in my eyes. It’s a bit like having stared at a light bulb and then you close your eyes, you will see the light. Despite that I still drove past my turning home, Apparently I was driving up and down the kerb and ended up crashing the car into a sign post. There was a Turkish Delight on the passenger seat, which I ate. Almost immediately the police and ambulance were there. As my wheelchair was on the back seat, the policeman helped me out of the car. Thanks to the Turkish Delight my blood sugar was coming up and I was compos mentis. I was checked over by both the police and ambulance crew. The police arranged for my car to be taken to away. As usual in these situations, help was at hand. My neighbour, Nigel, put both my wheelchair and me in his car and drove me home. One thing I have to be grateful for is that nobody and nothing was hurt. I have decided to take myself off the road for a year. You may be wondering where David was. He was in hospital having a cataract op! (Husbands! never there when you need them, lol).
About a week later I was self-propelling/pushing my wheelchair home from the town centre. I arrived at the beginning of my home street. The next thing I saw was an ambulance… Fortunately, one of the women who saw everything had looked through my ‘phone and realised how close to home I was. She rang David who drove down and took me back. I’m not sure if the ambulance crew treated me or if the women saw the Lucozade in the back of the wheelchair and gave me some or perhaps David gave me it. Yet another memorable (sic) adventure.
Apart from working at the Uni, meals out and all the family giving my brother Steve a surprise 60th birthday party, there is nothing else of note to say.
August 2013
I had an appointment with my diabetes specialist nurse, and guess what? I had a massive hypo about 5am. Unfortunately, I had to cancel. It was actually serendipity, as you will see later. I have still been working at Hull Uni, but now I get a lift there and a taxi back.
Anyway I went down to stay a while with Claire at the end of the month.
September 2013
Had a super time with Claire, didn’t come home until the 9th. In the meantime Mike had been up, so David wasn’t alone all the time. On the 17th I saw my diabetes specialist nurse. The idea was to try me with an insulin pump. If I had seen her last month I would not have been offered the new top of the range pump called OmniPod. For you diabetics out there I will give a (hopefully) short version of how it works. Everything is done via the pod. One can do a BM, and if you want to eat, put in the carbs and it works out how much insulin is needed and bluetooths to the pod which you can decide where on your body you want to stick it. The pod needs changing every three days. It takes time to get the best results. If only it made coffee too!
I got new specs this month. They are varifocals which is a good idea as I wear them all the time, which means I am not constantly shouting “Where are my glasses?”. Although I still keep losing my e-cig…
Thanks to a generous woman at Uni, I now have a motorised scooter which I call Blue, simply because the plastic bits on it are blue. (Back racing again, well almost as it only does four mph). I used it to go to a car boot sale at the Grammar school – I can tell you are thinking ‘how?’. I packed a big bag, put it where my feet should go, feet over the top of the bag and off I went. I met Nicky (my PA) and parked myself next to her. Didn’t make much, but managed to get rid of a few things.
We were invited to my brother David’s to celebrate the birthdays of both their kids, Megan 21 and Josh 18. SPS had got the better of me that day, spasms, rigidity and anxiety which meant I couldn’t go. Only managed to call to wish them Happy Birthday.
November 2013
I don’t suffer too much with the startle response, in fact it’s usually caused by things in my peripheral vison, ie someone approaching from my side will startle me, or quiet noises – not loud ones. Weirdly, if my left hand gently brushed against a glass, cup etc, the afore mentioned item would quite likely end up on the floor.
One day I was using the oven. I’m not sure what happened but my left hand jumped up and I got a rather nasty burn on my left hand. I have to keep seeing the practise nurse to dress it. Later in the month we were back in Buckinghamshire for another wedding, Emma’s sister, Lynsey. On the morning of the wedding Jane and I baked about 200 cup cakes for the wedding breakfast. Because they have so many friends, they baked too. This may sound a bit on the ‘stingy’ side, but they had all planned it together and it was super. The following day the two daughters and their husbands came for Sunday dinner. It was a dress down day. Girls in onesies, me in Jane’s pyjamas. Sometime after they left I was making a cuppa. I had just poured boiling water into my mug when my head brushed against an open cupboard door. The startle response hit hard and the full mug spilt down both legs and my right foot. I have never felt pain like it. I screamed and they all came to my rescue. David and Mike held me up whilst Jane got the pyjama bottoms off. They all said I should go to A&E, but not Liz! Having been lead to a sofa, my feet in cold water and wet towels around my legs, all I could do was take some pain relief. The towels had to be changed a couple of times as they were steaming. I didn’t get much sleep that night, and had to wear David’s slippers to travel home the following morning. It took quite a while before the blisters finally burst, during which time I was back and forth to the practice nurse – again.
Other things this month have been ‘usual’, but my brother Martin and I went to see Chris Smither. He is a fab folk singer and guitarist. In fact, perhaps the only event where I didn’t suffer any injuries.
December 2013
I am still seeing the nurse to have my legs treated. I went to the Beverley food festival in my wheelchair. The front wheels are small, I need to look for bumps and holes all the time. There must have been one hole I didn’t see which led to me flying out of the chair. Fortunately I got away with a small injury to my right arm.
We had Christmas dinner with Martin and Sue. She made minestrone soup for Chris as it’s his favourite. Chris started a new job as a groom not far from London, so there was quite a lot of traveling to get his gear there.
So, that is my diary for 2013.
February 2014
Well Chris’s job didn’t last long. They were paying him a pittance, all cash in hand. Having queried them about it, nothing was resolved. He handed in his notice. They asked if he would work an extra week, which he did. Then would he work another month. I’m sure how he told them he knew they were taking him for a ride (pardon the pun). So it meant another journey to bring him and all his stuff home.
Apart from that incident, not a lot has happened this month other than the dishwasher breaking and our fence blowing down. And Nicky took me to the donkey sanctuary to see my adopted donkey Billy.
David thinks I am drinking too much. Mmm, am I ?
March 2014
I have done a few sessions at Uni, seen Billy and had a lovely time in Devon thanks to Nicky, who moved to Beverley from Devon some time ago. Anyway, we visited a lot of her friends. We played skittles with the team she used to play for. I really wanted to try it, so with one hand holding a rickety ball in one hand and hanging onto Nicky with the other, I flung the ball and, believe it or not, I knocked all the skittles down. I also met Nicky’s former husband. He works with wood (not sure what his job title would be as he is self-employed). No idea how two super pieces of wood and a rather large amount of homemade cider ended up in Nicky’s boot! The friends we stayed with took us to a beautiful beach. Before we left for home we treated ourselves to a Devon tea, at 10.30am. Yum, yum. On our return, Nicky deposited the wood in a part of my garden, aptly named Woodhenge. No hypos, but a few mishaps when pushing my wheelchair. No real injuries.
April 2014
We have had a committee meeting. Plenty of Uni work, including conference meetings. Plenty of meals out, but despite the pleasure of all of that, I have, at David’s request joined AA.
May 2014
I had a super night out with my brother Martin. We went to see another folk singer I adore, Flossie. She is French and teaches French in a school in Newcastle. She has a wicked sense of humour too.
Vanessa took me to our old stomping ground, Beverley Theatre Company, to see them perform Bedroom Farce. I think we were involved with the same play in the eighties.
It was Claire’s 50th birthday. I got the train to our brother David’s home near Scarborough, and he drove his family and me to Brighton for the party. I got a lift back the following day with a couple of friends of Claire, who live in Beverley. I think by the time I got home Claire would have cleaned the house top to bottom and spent the rest of the day looking at her presents. There were some fab pics of her!!! Apart from a visit to Specsavers, there were no hospital appointments and nothing SPS-wise worth mentioning.
June 2014
Saw my diabetic consultant, we usually talk more about SPS than diabetes. Well 45% of SPSers are type 1 diabetics. I have done a few sessions at Uni. David took me to Whitby to a 60s weekend. The events are always so friendly. We were chatting to a farmer, his wife and her sister. The sister always goes with them because he just does not stop dancing, so when one woman is exhausted, the other one steps in. I was in my wheelchair and he approached me for a dance. We had crossed wires, as he was going round the back of my wheelchair I stood up, then fell down. Once sorted we had a dance for about three minutes and then I had to sit down. I used to love dancing when I was ‘normal’. Martin and Sue have a blank canves which is their front garden. They asked if Nicky, who has a wealth of knowledge of the subject and I, if we would get the plants and then make the garden look good. We sourced the plants and (mostly Nicky) put the garden to rights. David went on a short golf trip to Norfolk with his brother, and he would never forgive me if I didn’t tell you that he won. I have seen my GP and had bloods taken. Unfortunetly it showed I have done some slight damage to my liver, obviously due to drinking. I am ashamed to be telling you about this, but I know many SPSers use either cannabis or alcohol to ease symptoms. If you use alcohol, just be aware how it can take over your life.
July 2014
Nicky and I went to see the open gardens in the area where Martin and Sue live. We both used my wheelchair to carry plants we bought – good job I took it, lol. Despite not actually falling, I came close to it on a few occasions. In areas where I couldn’t take my wheelchair, I had to hold on to Nicky’s arm. It just takes an unseen pebble to set my startle response off. As this happened a number of times, I imagine Nicky’s arm will have one or two bruises. It is all done for charity and as usual I hand SPS cards to anyone and everyone each year. I was very pleased to have SPS recognised, as we received a generous cheque from them. I was very shaky when we arrived back at Martin and Sue’s home. As usual she had made quiches, salads etc, so we both pigged ourselves! It took its toll on me as I fell asleep straight away having got home.
I have seen both my GP and Neurologist this month; went to the donkey sanctuary; Mike came to play golf with David. David had bought tickets to see Status Quo in Scarborough. We were both really looking forward to it. We arrived in the afternoon, planning on having a picnic, but as we got out of the car David wanted something out of the bag, Oh no, the first thing he found was a small bottle of wine. He was furious, and rightfully so. Anyway we didn’t see Quo or even have a picnic.
August 2014
I am finding it difficult to write this month’s diary. I was going to an AA meeting on my motobility scooter (I call it Blue) and had taken a small bottle of wine with me, which I drank as I took a short cut. One small bottle and I was almost drunk. What I haven’t told you is that since joining AA, I have still been drinking. Anyway, I didn’t go to AA that night, instead I took myself off to the other side of Beverley to the police station. I was greeted by a lovely policeman and when he asked how he could help, I burst into tears and told him I wanted locking up. He asked why, and I told him I was a bad person. He was very calm and sweet as he spoke. A few moments later a neighbour who is also in the police came to take me home. We were followed by a police car because being disabled meant she had a ‘duty of care’ and could have needed help as I may have fallen. David opened the door with a look of horror on his face. He did not speak to me, wouldn’t be in the same room, let me cook for him, separate rooms etc for a couple of weeks. When I asked him why, he replied “You make your decisions and I make mine”. About a week later he simply said he was going to visit his brother. I didn’t know how long he would be away, but I knew he needed the respite from me. As he left I told him I will be as sober as I am now when he came back. There was no communication while he was away. He came back about 10 days later. I opened the door and his face was a question mark, and I told him I was still sober. I am writing this in 2015 and still remain sober. So I will leave that subject for now.
September 2014
I have had a mammogram and seen my diabetic consultant. David and I had a meal out, and also went to Martin and Sue for a meal. We had another visit from Mike. While David had stayed with him he hadn’t discussed our ‘problem’ but Mike saw the difference in me and during the time he was here he and I talked more, had more fun than usual.
My SPS is about the same as usual. No major problems. I still find mornings are the worst part of the day as my lower back seems to be at its worst.
I visited one of the members and helped fill out a PIP form for his wife. A PIP form is the replacement for the DLA form. I think this is the third time I have done this. Having said that, if I had to fill one out for myself, I would probably make a mess of it. So take note, get someone who knows what they are doing to help you.
October 2014
Only nice things to talk about this month. I visited my GP (can’t remember what for). As I walked in, he took a double look and said: “You are not drinking are you?” He saw bright eyes, and weight loss, and I suppose a more smiley face.
Four of us went to a steak night at the golf club, where we had a super time. The only problem for both David and myself is sitting on uprightdining chairs for too long. We both get backache. David has five slipped discs and I have SPS! So as we left I had to have help getting to the car.
Nicky and I went to the Beverley food festival, which is super if you are not in a wheelchair. I managed to miss a lot as it was so busy. Never mind.
I’m not sure if I mentioned it earlier, but David has again organised the golf competition ‘Order of Merit’. It runs April to October. I had pictures of myself and the winner, which appeared in the local papers and the Hull Daily Mail. It’s a great way of raising awareness and getting some funding.
We had our bi-annual committee meeting this month. It usually takes two to two-and-a-half hours. Despite knowing who will be coming, and more or less what we will be doing, I get very anxious. ‘Unwarranted anxiety,’ which makes me stiffen up, and my back aches more than usual. It is a part of SPS.
We went to Martin and Sue for a meal, and despite a lovely time, it was onto the comfy chairs as soon as we had finished.
November 2014
David and I went to the golf club for bonfire night. Hot dogs and burgers etc. It’s the best view of the fireworks, which are organized by the Lions.
It was Nicky’s birthday, so I took her to see a play at the Memorial Hall, which was performed by The Beverley Theatre Company.
Gadabout Liz decided to go to London. I was only staying one night, so I rang an old friend to ask if he could put me up. On the Saturday, I went to look at the poppies surrounding the Tower of London. It was packed, and my wheelchair and I had to navigate the crowds and steps. I had earlier applied to buy one of the ceramic poppies, but too late, they had all been sold. They made the precise number to match those killed in the First World War. The beauty of the poppies representing such tragedy was remarkable.
Later, I tried to make my way to my friend Cyril’s place. The first bus came and went as it was full, as did another four. Finally I managed to board one, as long as I could find a stop where I knew I could get to the 73 bus. Yep, I found it and made my way to King’s Cross station. By this time it was raining so I got a taxi. I rang Cyril to tell him my eta and, bless him, he was waiting in the rain for me. He insisted I sat in the wheelchair so he could run while pushing me. He lives in a studio apartment. I was going to take him out for a meal, but he insisted on cooking for me, and a very nice meal it was too. The following day I made my way to the cenotaph. The queue of people seemed to be a mile long, fortunately they were on the road side of the pavement, so I whizzed past them all. As I reached the entrance to Whitehall, I (truly) accidently caught someone’s ankle. Everyone moved, rather like the parting of the Red Sea to let me through. When I got to the point where we had to be, there was a police check. I said: “Don’t delve too deep as yesterday’s underwear is in my bag”. He laughed, just opened my bag and let me through. Again, with the help of the police, I was given the absolutely best place to see the wreaths being laid – until the army of men wearing busbies blocked my view! It was a good job David had recorded it on TV, as I saw nothing! I managed to get the train home – on time, and got back to Beverley in super quick time, and there was David waiting to drive me home. Despite no real problems SPS-wise, it took a few days’ rest before I was able to get back to ‘normal’.
December 2014
A couple of stints at Hull Uni. I don’t know if I have mentioned it but Chris is very much into anti-fracking, so we took food and a few days later we took the wood from our fence which had fallen down because of the high winds. As usual we spent Christmas day with Martin and Sue, along with other members of the family. David and I went to the donkey sanctuary, then out for a meal on our wedding anniversery. On New Year’s Eve we two idle old gits just stayed in! Bye Bye 2014.
January 2015
Well, I hope this year will make for a little bit more interesting reading than the last one. My PA, Nicky, will no doubt read this, but I have to say it, “Nicky, your sense of direction really is worse than mine!” We went to B&Q to take back a drawer from the new kitchen. It’s only a few miles away and she has been with me before, however, this time she thought it would be a good idea to get home a different way. An hour later and neither of us knew where we were! To cut a long journey, sorry story, short - we ended back at B&Q. I just want to know how she did it! I must admit, it was quite good fun watching her panic…
Mike has been up for a visit and I have been to Brighton to see my sister plus an interviewing session at Hull Uni. One of our friends, and a committee member, came over to have a jamming session with David, and I was given help with the beatbox which David got me for Christmas. I can’t really play my guitar now as by the time my fingers get loosened up, I have had enough.
Oh! Forgot to tell you about the yearly visit from my social worker. David and Nicky were both here when she arrived. The anxiety started as soon as she walked in. I began holding onto the chair quite tightly and then my back started to spasm. David held me from behind to stop me falling and Nicky tried to hold my hand, but I couldn’t let go of the chair. I told my social worker that it was because she was there. She was a bit shocked, but at least she was able to see what unwarranted anxiety is like. I told her it was not her fault, and that it simply just happens when it wants to. So here endeth January.
February 2015
All the usual stuff happening, out and about etc. I had been out shopping with Nicky, but as I approached the garden gate I stumbled. On what I have no idea, but in the split second it happened/happens the feeling of dread kicks in. I was lucky, as Nicky caught me. A ‘normal’ person would just get on with what they were doing, but I just went rigid. Pain and anxiety stepped in and it took a while to get over it. ‘It’ – nothing really happened! Anyway, we had a cuppa tea and carried on (remember the song ‘Right said Fred’?).
David and I flew from Humberside airport to see the northern lights. It started with talks given by numerous people, including Pete Lawrence from ‘The Sky at Night’. We flew to the Hebrides. We would have seen more of the aurora if we had gone the following night, but the experience was still amazing. Although the lights were not vivid, we did see green lights and it was weird to see stars between the earth and the aurora. Pete was onboard and quite happy to tell us where to look and also to talk to us (I don’t mean just David and I). I asked if I could have his Sky at Night t-shirt to auction off for our charity, but despite taking my card and his kind of half promise, I have not received it. We got back at 1am. Both still too excited to sleep, so we watched a film. Why did I wake and get up at 7am? By 9am I was asleep on the sofa and didn’t wake again until lunch time.
On the 25th I attended a meeting at the House of Commons as a representative of SPS which was hosted by Rare Disease UK. The details are on the web site. Before the event began I wanted ‘photos of the people who would be speaking, with me in front of the Rare Disease banner. I was chatting away to one of the speakers, and realised I hadn’t introduced myself. He said: “I’m Freddy”. Later, I realized it was Lord Howe. Don’t know why I am telling you this, perhaps it’s because everyone referred to him as Lord Howe apart from me! We were all fed and watered, but when I was offered mine I told the waiter it was a little early for me, but could he put it to one side for later. When the meeting concluded, I was given my food. It was served on a slate and had a H of C cup filled with cheese sticks on it. I took mine outside and sat looking at the Thames. It was so peaceful, I could have stayed all night. A little time had passed and I saw two Bobbies. When they approached, I asked if either of them had a tissue (no, you daft bats, I was not feeling tearful) as I wanted it to wipe off the last of the avocado from the slate, and I didn’t want my nice leather briefcase stained green when I purloined it. They obliged, and when I asked if they would feel compelled to arrest me, they laughed and the reply given was “We all like souvenirs”. My next question was: “How do I get out of here?”. They rang, and I then had an escort. To those who have not been, I have to say it’s a massive building. My escort kept getting lost, but in the end we found the exit. He hailed a taxi and I was soon back at the hotel. The following day I was going to go to London zoo, but it just rained and rained, so I went down Oxford St. I wanted to see the Fleet tributary which runs through one of the shops on its way to the Thames. The shop is called Browns, and they keep goldfish in the stream. Lovely. As David had driven down to his brother’s, I headed to Marylebone train station to get the choo choo to High Wycombe, but he didn’t get there in time so Mike picked me up from the station. His wife, Jane, and I spent much of the time in the kitchen cooking and chatting.
March 2015
What can I say day about this month? Nothing out of the ordinary happened! It was funny when I got up on my birthday as David had a pile of presents and with a big smile said Happy Birthday. I had completely forgotten!!!! (must be an age thing). He had also organised a meal out with Martin and Sue but it really felt like just another day.
April 2015
I had an appointment with my neurologist. I saw his registrar who, to my amazement, knew a lot about SPS. I give him a card and he said he would email me. We will see! Nicky and I went shopping. First stop: Boyes, then to the wood yard, and then to the Westwood to take her dog for a run. I got out of the car and just lent on it. I tried to throw the ball. I can throw and I can aim, but not at the same time! So I only had a couple of throws. Then, as we went to get back in the car “where is my wheelchair?” - apart from gone! We tried to remember where I last used it. Not the wood yard, so it must be outside Boyes. We rushed round the town to get back and, lo and behold, there it was. I must have put my shopping in the front of the car and just sat down. Phew! Just another little adventure.
It’s David’s 60th this month and I have been planning a holiday. So on the 15th we stayed at the Hilton at East Midlands airport. My super-duper travel agent and I had planned everything secretly. She really didn’t disappoint. She had let the hotel know it was an ‘0’ birthday. As we ate dinner I had a quiet word with the waitress as I had expected some sort of treat for David. She brought a chocolate torte with happy birthday written in icing around the edge of the plate. When we got back to our room, we found a big Happy Birthday banner across the top of the bed and a three teired‘cake’ which was made out of white towels, large, medium and small, and decorated with little shiny hearts etc. It really looked lovely. We were taken to the airport in a Mercedes. Then off we flew to Barcelona. Amanda, the travel agent, had organised the transport to Montcada Hotel. Wow, it was beautiful. We did the usual thing, the city bus tour. In the evening we went to a super steakhouse called Arcardo (perhaps not the correct spelling). The steak was Argentinian and perhaps the best tasting steak ever. We spent the following day exploring and watched the magic fountain during the evening. Always good to see the coloured fountains while listening to music. Naturally, the song Barcelona was played. Saturday was the real highlight, though, as we had tickets to see ‘our’ team play football at the Nou Camp. It goes without saying that Barcelona won 2-0. We spent Sunday here and there, and went on a cable car where the views were amazing. Later, the weather was perfect to laze in the hot tub on the roof of the hotel. Of course, going home day arrived but it had been a fabulous trip. I have to say a big thank you to Amanda, and if any other sufferer needs someone to plan their holiday, call me and I will give you her details. So we have both now had our 60th birthdays.
On a lovely sunny day I spent some time helping Nicky with her allotment. Up and down with the wheelbarrow I went (obviously there was stuff in it or it would have been rather pointless). I thought of it as exercise to help ward off bingo wings. That was until I fell, or should I say crashed, the wheelbarrow into a post which left me not only a little bruised but with nettle stings down my left arm and leg.
I went shopping for a pair of shoes, not convinced the ones I tried on were really what I wanted, so I wandered off. It was only when I got home I realised I still had one on. Yes, I really do mean one shoe of mine and the other belonging to the shop! When I rang them to explain, they thought I was confessing to stealing, so I told them to be on the lookout for a one legged thief. The problem was sorted out the following day.
May 2015
Unfortunately the committee meeting had to be cancelled as only three people were able to attend. Mike came up for golf and David went back with him for a few more days golfing. We went to see Status Quo which was a belated birthday pressy from Martin and Sue. Since I have had SPS, Quo have been the only band I have tried to avoid, as it upsets me being with people and watching them dance as I used to do. Fortunately on this occasion we were outside, and everyone was sitting.
Do you remember July 2013 when I crashed the car and took myself off the road for a year? As a diabetic I have to renew my licence every three years, and at some point last year, the reminder came through the post. This month I was asked to go for a medical. When the day arrived I was feeling very nervous. To cut to the chase I didn’t attend. I had lost my confidence as I have not driven for nearly two years. It feels like I am losing my independence – not a good feeling, but everyone agreed it was the right call.
It was Vanessa’s husband’s 60th birthday, and I wondered why she was being particularly nice to me. Should have guessed - she wanted me to make the cake! So I created a chocolate cake sprinkled with golden popping candy on the top. It also had a guitar shaped spatula ‘stuck’ across it, as Ray is a musician (Vanessa will no doubt use it at some point). The ‘surprise’ party was at the Sun Inn in Beverley. Ray was playing there when we all arrived, so not really a surprise party after all. Later, David and I chased off elsewhere for the joint birthday dinner for Joyce and Claire. Claire looks fab for fifty (bitch) lol.
At the end of the month, David and one of his friends went down to stay with Mike for a golf trip. Fab, a few days where I can do what I want, when I want. Well, that didn’t happen! A few hours after they left I started with a bug of some sort. You don’t need the details, but it involved opposing orifices, and the first night I slept on the sofa. So much for doing whatever I wanted to do. Watching endless films, and staying reasonably close to the loo was about all I could manage.
June 2015
Since I am no longer driving, David thought it would be a good idea to upgrade my mobility scooter. I am now the owner of an 8 mile per hour model. Road-user friendly, freedom, independence. Well, that’s what I thought. Having read where I can use it, it seems I can wiz around the town, but not get to places I had actually wanted to visit. It’s orange, so I have named it Kota simply because I love wildlife, and Kota is an area in Sumatra where a lot of studies are done on orang-utans. (Bet David Attenborough would want one just like it).
June means the folk festival, and yes I decided to go across the Westwood on Kota! (Apparently an illegal thing to do). I was half way across when I got a text from Nicky asking where I was. My reply was: “Stuck in an (expletive) ditch”. As the cows approached I bibbed the horn - no pun intended! It didn’t scare them, but they did decide to move away. Having arrived, I saw Nicky waiting for me. We had lots of fun meeting people we have seen at other folk festivals. The main attractions, Ralph McTell and Barbara Dixon, were super. Not sure of the time we left, but it was dark. My scooter has LED lights, and for those who do not know, it means all can see me, but I can’t see where I am going! I drove it along the path and crossed the road to get to an unlit path across the Westwood. I know the path very well, as I used to spend many a happy time there. Of course, that was in the days when I could walk! For those of you who are now lost, Google Westwood Pastures, Beverley. I was blinded by the dark and only drove in slow mode, but by George I made it to the end, where Nicky was sitting in her car waiting to see me arrive. What a sweetheart! This is a long story, so I will just say that as I passed Nicky’s house, there she was again. And then I arrived home! I had been sitting on it for about six hours, and found I could not stand without help. My back was so stiff I had to take more diazepam and ‘be’ undressed. Sod it, I still intend to go again next year, but will take extra diazepam while there!
I had been into town one Saturday and came back via the scenic route. When I arrived home, the Jersey Royals I bought had disappeared, but the following day I made the same journey and found a trail of the aforesaid potatoes on the scenic route and no, I didn’t pick them up, but had to laugh.
July 2015
I had some Tesco vouchers, so David and I went to London for three days. We arrived at the hotel, had a walk, a meal and then returned but before we unpacked I went into the bathroom to find water dripping from the room above. Wet floor – Liz goes into panic mode, as do my back and legs. Fortunately, we were moved to a different room. Higher up, eighth floor. Bigger room and a view of many of the sites in London! The following day we went to London Zoo. It took a while as we had to cross Primrose Hill park. As it was all downhill, I sat in my wheelchair and almost didn’t hold on. I knew I was going too fast when the chair ran onto the grass and I was thrown out of it. Totally uninjured, as I skidded on the grass, but with hindsight I did feel I had been a bit silly. Having said that, why can’t a sixty three year old have a bit of excitement once in a while? We arrived at the zoo and discovered it was free for me, as I am disabled, or perhaps it was free for ‘my carer’. I remember going to London Zoo when I was at school, in fact I have a couple of pics of me riding an elephant. To be honest, we both felt it was a bit of an anti-climax as the lions were away somewhere, but most importantly there were no elephants!!! Anyway I took ‘photos of every type of animal, and one of the meerkats especially for my brother Martin as every time he is sitting outside a bar or coffee shop he does a very good impression, although he believes he is simply people watching. Anyway I digress. We ate at the Aberdeen Angus steak house in Leicester Square – yum, yum. Not knowing where to go, we began to walk. I had no idea where we would end up, but I had seen adverts for ‘Sunny Afternoon’ and each time I saw them I told David I would really like to see the show. As we walked around a corner I saw the Harold Pinter theatre situated in the West End, and another Sunny Afternoon poster. David led me in, as unbeknown to me he had bought the tickets a few days before. Wow! So is it ‘Great minds think alike or fools seldom differ’? It was a fab show telling the Kinks’ story. Ray Davies was, and still is, one of my all-time favourite song writers. The following day we used the Tesco vouches on the London bus city tour, which included a Thames river cruise. Very enjoyable! Just managed to get to the station on time for our train home. Had a super time away, but my body needed a few days to get over it.
We have decided to make some alterations to our conservatory. As there is a step down to get into it, it’s a bit problematic for me. To begin with, we have had a larger radiator fitted. I can’t help thinking it will take some time before the room will be useable as most of the work is going to be done by family and friends. They are all professionals, but are going to be fitting us around their ‘work’ time. The radiator was fitted by my nephew Tom with help from Martin (looks good).
August 2015
Just for a change, I decided to go to Hull. Sitting in my wheelchair I basically let myself roll down the avenue. I began to feel a bit anxious and crossed the main road to get to the bus stop. Having got on the bus I could feel myself shaking a bit. I had no idea where in Hull the bus would stop. Fortunately, it dropped me off exactly where I wanted to be. Despite that, I still felt anxious. To cut a long story short (which is not my forte) I did some clothes shopping (something I do not enjoy), took some pics of this and that, took a diazepam and went home. Still anxious, but let’s just say it was an adventure. Not sure when or if I will do it again! I suffered for it the following day.
Chris came for a visit and he and David went to the cinema. Lovely, as they ate out too, so I only had to cook for me, and had the full evening to myself! Due to a leak in the bathroom, which was sorted, we have now had the living room ceiling re-emulsioned. I took myself off to be beautified – hair, nails and waxing, all ready for our first cruise.
We flew from Humberside airport to Venice. We had been there years ago. I took a pic of me, hoping to get one taken in the same place in St Mark’s Square. Unfortunately, it was a case of ‘off the plane and onto a coach to the ship’, so no ‘photo! As we boarded the ship we found all the staff very friendly. We set sail through the Grand Canal. It brought back memories as we saw the Bridge of Sighs and the gondolas. We sailed past St Marks (the place I had had the original ‘photo taken). We managed to find our ‘state room’ – how super does that sound? It was a cabin! We had opted for one with a big window and I have to say it was really comfortable. There were so many places to eat, it was difficult to choose, but we found one and the food was lovely.
Day two; Dubrovnik. We meandered around the town and saw the impressive city walls. It was a spotless town but we were ‘waking’ on marble. Not so good when one’s head sees it to be even more slippery than it really was. Thank heaven for my trusty wheelchair! I was as happy as a pig in muck as the temperature was 31c. David, however, tried to find any shade he could. Thankfully, there were plenty of fountains where we could fill our bottles with water. We went to the harbour and, as we were both feeling tired, we got a taxi back to the ship. But it had been a lovely day. Each evening we found the entertainment well worth watching, but for me it was the food that stood out.
Day three; A day at sea sailing along the Adriatic. There was plenty to do. Swimming, sunbathing, quizzes, entertainment. We met up with a couple who, like David, enjoyed the shade. I spent as much time as possible in the sun. I’m not sure when David and I met up that day. Oh yes, dinner time.
Day four; Greece. We left the ship late am and took a taxi. The driver (Sotriris) was super, and took us to the Parthenon. As I had my wheelchair, the police let him drive as close as possible. He then pushed me to (believe it) a lift for the disabled. The view of Athens was wonderful, but traversing the Parthenon was difficult. Even I was feeling the heat. I hung onto the wheelchair as we walked over marble, stones, sand and everything else (put in place to scare someone with SPS). We did, however, manage to get around it. An hour later we descended to see Sotriris waiting for us. He then took us to the temple of Zeus. We didn’t have time to read everything, but David’s knowledge of both history and mythology made it much easier to understand everything. I saw a sign saying ‘Keep out’. To me, that is like a red rag to a bull. I knelt down with my head under the rope next to the sign, and David obliged and took a ‘photo. As we were walking away two police officers came over (gulp). They asked me to delete the ‘photo. Despite my smile, sad face, and almost begging them, I had to delete it. David said they should arrest me, but with a laugh they took my camera and took a pic of us both next to the sign, but on the right side of it. We then went to a market where I bought a type bowl ‘thing’ on legs which was made from an olive tree. We then paid a visit to the Olympic stadium. David did some videoing of it, but I stayed in the car as I was tired. Sotiriris asked if we would like to go to his home for a coffee, but sadly we had to get back to the ship. We exchanged ‘phone numbers as he and his wife want to come and visit England, and, of course, we told him they could stay with us. He has a holiday home in Greece in which he said we could stay. What a wonderful day it had been.
Day five; Turkey. Once past the buy me! buy me! people we entered the market. I got a pair of leather flip flops for 20 euros (they wanted 50). Wish I had bought more as they were so comfortable. David bought a leather belt (!). Later we went to Ladies Beach. I was determined to swim in the Aegean, and I did! The dry heat is fabulous for me. I felt loose – wonderful. David videod me almost dancing my way to the sea, and coming back again. If only I could be like that at home.
Day six; Another day at sea which was again good fun. We booked at one of the restaurants, Cagneys, which was a steak house. My, oh my. We both ordered steak which was superb.
Day seven; Split. A few members of my family rave about the town. However, there were too many steps all over the place for me, plus we were on marble again. David managed to see more than I did, but to be honest during the week I had walked far too much, and was exhausted. We stopped at a café which had an air con mist outside, and we were sitting next to a sign which read “Hungry? We will feed you. Thirsty? We will get you drunk. Lonely?....we will get you drunk”. Hee, hee. Our only problem was that they only accepted their own currency, so David had to go to a hole in the wall to exchange Euros. Back on board for our last night. I had mixed feelings – love the heat/love home. The latter won. We were back in Venice when we woke. After goodbyes to staff and people we had met it was back to the airport and not too long before we were home again. Mmm. I was surprised to find that Rodney, the head chef, lives in the next village to us. He gave me his email address, but I don’t think we could afford anything we may ask of him.
September 2015
Back home from the holiday and the work on the conservatory begins! Stage one - all the windows have been changed. Something to do with letting the sun in or not, far too technical for me. The day it was being done my anxiety kicked in. Why? After all, it was the beginning of what we wanted. SPS life seems to be a type of conjoined twin thing, and the SPS twin has its own mind!
At last I will be having the cataract on my right eye sorted. I went for the pre-op visit, and as their computers were down I was given a date for the operation there and then. I stopped taking Simvastatin after a visit to my new GP, as I had read articles about side effects. Simvastatin is the cheapest statin available, but I will wait about three months and have my cholesterol checked again. I advertised my old mobility scooter on the Facebook site, and it was gone (for free) to another sufferer within the day.
October 2015
Vanessa took me to the Outlet for some retail therapy. For those who don’t know it, it’s a big shopping centre. All well-branded stores at cut down prices. Really, it’s a fun day out, why I don’t know as neither of us like shopping. Perhaps it’s the company combined with the laughs and chats we have. Reminiscing and sharing memories of days gone by. We go our separate ways and then meet for coffee (my contribution to the day out).
We have had our committee meeting this month. I always stress beforehand, but that’s par for the course with me. It feels like there is too much to do (but there really is very little). All I need to get out is paperwork and check the time for David to pick up a member from the train. I just go into ANXIETY mode, and anxiety always wins. Having said that, as soon as we get started I revert to ‘normal’ Liz, lol.
As the conservatory is almost finished, we are working backwards through the house, so the living room is next. Nigel – neighbour and friend – offered his help, but stubborn Liz had a hissy fit as I wanted to do it! I don’t care about my age or disability, I just wanna, wanna, wanna do, for as long as I can. It ended up with me in tears (privately) but I will not give in. The colour chosen, I emulsioned the room, in my SPS way! David then thought it would be a good idea to have wallpaper on one wall. When it arrived, guess who did it – correct, me. OK, it may have been done in an unusual fashion, but when one has SPS it’s easier to do things in a way which suits. So that’s what I did, and I think it’s okay. After that I had my cataract operation, so now or in the near future I will have two un-cataracted eyes, and hopefully will be able to see! Fairly uneventful month (ha, ha) but we still ate out with family and friends.
November 2015
The conservatory will be finished this month, but I (eye) found it funny when the guy who was fitting the blinds rang to say he had injured his eye and had to make it a week later. Perhaps we could form an eye club as it was the same week as I had my post cataract op visit? Table and chairs arrived, so all set for our first dinner party. It was my sister in law’s 60thg birthday party – we didn’t go to it! The stress of Xmas has been building up since October. I just couldn’t handle the journey, the people, the everything. I was determined not to be beaten and invited Martin and Sue for our first dinner party. It all went well apart from Sue who sat down and broke one of the new chairs (not her fault, must have been a flaw. No harm done and quickly replaced). I have ordered a new carpet for the living room, but Liz can’t wait, so proceeds to pull up the carpet and underlay with the help of a Stanley knife and some string! David’s face said it all when he saw what I was doing (she is overdoing it- again). Well, of course I was, and will do for as long as possible. I admit I was exhausted by the time I finished. David took it all to the local tip and that night we had a takeaway. It was very echo-y, due to it being a concrete floor, and I managed to smash the lid of a crystal bowl David had won when playing golf in Ireland 30 years ago. I think I was more upset than he was.
On the last day of the month I went for my new specs – yippee! Oh! Forgot about this, my mobility scooter didn’t have much charge left, but as I was so keen to get my glasses I still used it. I managed to get to the shop, asking a complete stranger to take a bag of clothes to a charity shop on the way. I knew I would not make it home, so I called Nicky to ask if she would pick up my charger from home and meet me at the library, despite not asking if the library would be kind enough to let me plug it in there. So Nicky arrived with the charger while I was being told they could not help! I asked to see their electrician and after lots of smiling and a short conversation it was plugged in – result! I held Nicky’s arm to her car and home we went. David took me to pick it up later and I was able to ride it home with the lights on. One last thing, why did I choose a time when feeling as anxious as I was? I put two questions on every SPS web site in the hope the answers would be helpful for any research in the future. I have been inundated with replies – that’s good news.
December 2015
Here we are on the Christmas countdown. On the first day of Christmas my true love brought to me (wrong song) a new carpet! Super, no more echoing, although 80% wool needs hoovering every day – Nicky, where are you? It is Chris’s birthday and on account of his anti-fracking lifestyle, we were unable to send a card as he has no address. However, we messaged him and he told us he was spending the night in a tree house, and partying to boot. How he managed to stay up there all night is beyond me. Anyway at least he didn’t fall out!
I had a call from Nicky and she picked me up to see the Christmas trees in Beverley Minster. There were so many. I will try to get one for next year – for the charity. Christmas, this year has been such a struggle for me. I can’t concentrate, I am continuously anxious, and just wish it was all over.
We invited Ray and Vanessa, well actually, they invited themselves, for our next dinner party. Four courses prepared and 6.30pm arrived, but no friends. When I rang, I was informed it was the following evening. Just can’t get anything right. Fortunately, the meal was a cold starter (went into the fridge). Main was Raghu - even better to be heated the following night. Desert was a chocolate log with raspberries, blueberries and Greek style yoghurt, so that was safe. The following evening went well. We ate and then played quiz games from apps on the tablet.
I organised an AA party again, but I don’t think it was as successful as last year’s party. So have decided not to do it again next year. Although you have to remember, I was not in a good place myself.
The new TV stand arrived and both David and Nigel managed to get it in place, plugs and all. (I stayed out of the way). We went to Martin and Sue for Christmas dinner. My contribution was a Pavlova and piles of Yorkshire puddings - weird combination! I was concerned because we ate at about 2pm. As I only eat in the evening, my body is a bit insulin-resistant during the day, so I had double the insulin for the meal. Screwed up Liz just wanted to go home, and when we did all I could say was “Good, that’s one day done”.
Chris came on Boxing Day, so another Christmas day and another Christmas dinner. To be honest, it was an enjoyable day, but yet I just wanted it to be over. It was our 35th wedding anniversary and we had been invited for dinner at a friend’s house. I really hoped David had not organised something, but thankfully it was what it said on the label, dinner with Mike and Evon. We had a really enjoyable evening. New Year’s Eve, we had Chinese takeaway and fireworks at midnight. Goodbye 2015! One last thing: Each and every day I spend hours on the web, ‘phone and skype. My days are full, and evenings at times. For anyone reading this, I wish you a happy and healthier 2016.
January 2016
Great start to the New Year! 2nd January and neither of us could sleep, so up we got. I peeled potatoes, cooked meat and made pastry for the meal later today. Finally, we both went to bed at 3.30am. I was up at 7.30am and spent the day feeling shattered. At least the dinner was good, lol.
We had friends over for a weekend – Jeff and Jenney. Jeff was with David the night we met and if it hadn’t been David’s turn to ask for a dance, I may have ended up with Jeff. Moving on... we had a super time chatting and swapping life events. On Saturday evening the four of us, plus Martin and Sue, went out for dinner. I think between us we had one of everything on the menu. An unusual event happened on Sunday morning – I cooked a full English breakfast. As I only eat in the evening, I just had coffee, but it did seem to go down well (it had to as Jenny has her own catering business and I didn't want to suffer by comparison).
Later in the month I went to Sheffield to support a fellow sufferer. I can’t go into detail, but it was a long day and fortunately her husband was able to take me back to the train station and David picked me up at 11.30pm back home in Beverley.
The question now is, is it my age or the SPS which makes me feel so weak? Running a support group and charity is such hard work. I spend my days on the laptop, ‘phone, Skype, letter writing, etc. It feels as if I don’t have a life of my own. I don’t want sympathy. This is my bed so I must lie in it. Even writing this makes me sad as, in my head, I can still do anything, but my body doesn’t always agree.
On to a happier note to end this month: We went to Lucca’s restaurant in Hull with Martin and Sue. I was able to hold Sue’s arm to get in safely. We had steak to die for (well, it did for us!). My only problem was I needed the loo and I remembered it was upstairs. Only as we finished our meal did I see one not far from our table on the ground floor. Relief at last!
February 20116
Nicky and I went to one of my old haunts to see a Beatles tribute gig. I know most of the guys there and asked if they had a playlist. They did, but nobody was playing my favourite ‘In my Life’. I asked if they would play it and one of the guys asked why not do it yourself? My reply was “I can’t sing!” Unknown to me someone downloaded the words, another one wrote it out and two guys had practiced it backstage. At the end of the evening it was announced that I would be singing!!! So standing up, holding on to a pole, leaning against a wall and microphone in hand, it happened. Nicky even videoed it! Others must be the judge of how I performed…
I’m not sure if it was the cold, late night or embarrassment, but when I got home I fell in the bedroom. Fortunately, my top half fell on the bed, but I did bruise both knees. Otherwise I was just shocked and shaken, and David had to help me downstairs.
“I never get a cold” (!) Everyone who has been in our house seems to have one bug or another, and yes, it was passed on to both of us. I was sure mine would last for weeks, as is usual for diabetics, but in fact it didn’t last too long and in fact David suffered more than me.
Good news! George, my tortoise has come out of hibernation. He just walked out of the office into the living room to say “Hi guys, I’m back”.
I had a morning when my blood sugar reading was high. Despite the pump telling me it was giving me insulin, it wasn’t. In the end I had to change the pod despite having changed it the day before. Not a good feeling which lasted most of the day. At the end of the month my sister had been up North and picked me up on her way back to Brighton. Nice.
March 2016
Well, here we are again at Claire’s home in Brighton. 1st March and I went by bus to visit an SPS sufferer, Julie in W Sussex. It seemed to take an age to get there, however it was lovely meeting not just another suffer, but one who had never met another sufferer before. We had lunch and a chat. I decided to get the train back, which was much faster! I had only gone by bus as I have a free pass. We are now friends on FB.
That evening I was unhappy with my blood sugar reading before going to bed, so had something to eat. The following morning my pump read high, but would not give me any insulin (?) so I used the syringe which is for filling my pod to give myself insulin. No idea how much it was as it wasn’t an insulin syringe.
Then I set off for a day in London. I checked my blood sugar twice during the 50 minute train journey and it was coming down nicely, I thought! On arrival at Victoria station I stepped off the train and rambled words to a member of staff. I do remember her asking if I needed an ambulance. The next thing I remember was waking up as I was being put in an ambulance with a glucose drip in my arm. They wanted to admit me to hospital, but I refused as I was going to the House of Commons to represent SPS at the Rare Disease UK meeting. The ambulance driver was a sweetheart as he hailed a taxi and told the driver where I was going. I arrived half an hour late and disorientated I can’t remember anything that was discussed or, indeed, how I got back to Brighton. The only good thing done today was that I submitted the two letters to be given to Jeremy Hunt MP for health and one for Liz Kendall MP, shadow cabinet.
The following day I had arranged to meet another sufferer, Lisa, who also lived in W Sussex, but had to have a day off as I was still feeling the effects of yesterday, so I went the following day instead. She picked me up at the station and headed for a tea room. I have visited her before so we had plenty of chat to keep us going. While at Lisa’s home I asked if she knew Julie. She didn’t, so I rang Julie and handed the ‘phone to Lisa. They exchanged home and mobile numbers and discovered they didn’t live very far from each other, so they arranged to meet up. Nice.
I had had filled out and sent a form for the SPS charity to Waitrose, and this month had an email from them to say we had a charity tub for this month. Nicky and I went and did our thing to promote the event. It was fab with us both given a handful of green ‘coins’ to put in the tub. Having spent too much money and time we decided enough was enough and went home, totally shattered.
On the 16th my bs was high, so again I had to self inject, but at least I had an insulin needle. However, I set the alarm twice during the night so I could keep a check on my readings.
On the 17th David and I went to a meeting for those using an Omnipod. There were about 10 of us but I was the only one having problems. Still, it was a good session and quite informative, so fingers crossed we’ll find it easier to use and manage.
I have been for retinal screening. I’m not expecting any good news, but I will wait and see when the letter arrives.
Some time ago I applied to go to the Eurordis summer camp in Barcelona. Happy to say I was accepted. Eurordis is a not-for-profit organisation that deals with rare diseases in Europe. To attend, technophobe Liz must listen to a webinar, do some studying and then take a quiz before June!!! I’m up for it, as always, lol.
The day before my birthday I had a meltdown and told David I had been feeling low since October. So a plan was put into action – I made an appointment with my GP and am now back on antidepressants.
I have asked for, and received, a new Omnipod. I feel so sure my old one was playing up, not simply me not using it correctly. Blood sugar readings do play an important part in SPS. If it’s high, I am more rigid and it’s more painful.
April 2016
Not an April fools joke in sight! In fact the opposite: David and I went to see the diabetes specialist nurse. With a bit of tweeking it was set up to work properly (I am writing this in May and it really is working, so it must have been the old pump after all).
Nicky and I have joined a pottery class. It’s super as it’s just us and the teacher, Pat. I have made two dishes, one with spoon handles. The other is precious as a diamond from my engagement ring is somewhere in it! I also made, via the coil method, a dog’s head. I used the pic on my ‘phone to try to make it look like Ollie (our dog who died some time ago). It even had the lead hanging in his mouth. I bought a necklace from a charity shop so I could take the fastener out to put on the end of the lead. The day I was painting it my SPS really played up. Sit down, stand up, nothing helped. I couldn’t take any diazepam as I didn’t have any with me… Just before leaving I needed the loo. Once in the bathroom I was so rigid that Pat had to pull my clothes down and sit me down. She waited outside until I called and she then had to re-dress me. In that situation any shyness goes out of the window. I know the reason why it happened. I was making it for David’s birthday, and this would be the last class before that date. So anxiety and stress were the reasons/factors! Anyway he was delighted with it, but I have since broken the lead!
My rigidity is getting progressive, so I have upped my diazepam and now take 2 1/2mg mid-morning. By the end of the month I began taking 5mg before bed. It seems to be working.
It was my niece’s 21st and so off to Brighton again! Saturday, BBQ, Sunday at the comedy club, Monday and niece Emily’s birthday. I also took the opportunity to visit a sufferer in Brighton. She made me so welcome. We had coffee, a few laughs and took quite a lot of selfies. How can this woman be so cheerful and accommodating when she not only has SPS but also terminal leukemia?
I have had my blood checked for just about everything. As I stopped taking statins, I wanted to know if I’d need to start taking them again.
I have begun an online genomic course about diabetes. I am doing it in the hope that they will be discussing antibodies to GAD. Both Type 1 diabetes and SPS are the only two conditions where GAD is present in the same way.
On the 29th it was the Tour de Yorkshire. I thought: “Why not go”. As I approached the town via my usual route, I noticed the pavements had barriers in place, so at 8 miles an hour I simply drove down the road. I noticed a few strange glances and a few “Go for it” type comments. But the end of the road was blocked. A very sweet policeman asked everyone to move aside as he opened the barriers. I drove around the edge of the market place, not knowing where I was meant to be to see anything. Fortunately, I saw a friend who told me the best place would be near the magistrates’ court. Even on a mobility scooter it was quite a long way. Having arrived, I switched on my ‘phone to take a video. When I got home I watched the technophobe Liz’s video – 20 seconds of my mobility scooter! I hadn’t realised I had set it to go, and then as they cycled passed I clicked the video button again. Obviously (now) I realise the second press switched it off. Dear oh dear.
May 2016
I have now finished my genomics course on diabetes, but refuse to pay £35 for the certificate! And I have been to the House of Commons again. This time it was to attend the Genetic Alliance conference. It’s such a shame there isn’t time to ask questions. I had given the SPS card to one and all and discovered three people who recognised me as I had given them a card the last time we met.
We had an SPS Charity committee meeting, but as only three of us could attend, we had one committee member via Skype. Afterwards, we took committee member Tony home to Hornsea, and had fish and chips at the seaside (in the car, as it was cold). Lovely.
Vanessa and Ray plus the two of us have decided to call ourselves The Diners’ Club and sample the delights of pub and restaurant food in the area. Tough call, but someone has to do it…
Why oh why did broadband come to make the service faster? It was a Friday and they somehow managed to cut the charity ‘phone off. OK, they fixed it the following Monday, but I wonder how many calls I had missed?
I had the pleasure of meeting a fellow sufferer at Cave Castle golf club at South Cave. She dealt with the sponsorship forms and cash she had collected from all and sundry for the runner we had in the London marathon. Raised quite a lot of much-needed money, so thanks to everyone for that.
I finished the last (of seven) webinars, research and quizzes before going to the Eurordis summer school in Barcelona next month.
We had a lovely weekend when Mike (David’s brother) and Jane – Mike’s wife – spent the weekend with us. I only cooked once! Yippee.
The last piece of furniture arrived for the living room – a cabinet for the Hi-Fi system. David spent far too much money on upgrading the sounds system, but it’s really good to listen to vinyl again.
Healthwise, as long as I keep my eyes to the ground when using my walker or wheelchair, I seem to be managing. SPS is not my boss!
June 2016
I missed three birthdays, but managed to get a haircut and a few low lights put in ready for my visit to Barcelona! Nicky took me to East Midlands airport and she then went on her way for a week in Devon. I had said we needed to leave home at 5.30am. I got up at 4am and a few minutes later the doorbell rang. It was Nicky, so she had a coffee while I got ready. Amazingly, I was not anxious at all. I even managed to get from the car by myself pushing my wheelchair and pulling a case! It’s only a two hour flight to the Mediterranean heat. Landed in Barcelona and took a taxi to the hotel, just a short walk away from the beach. I had arrived on the Sunday as I knew I would need de-stress time. Bearing in mind that I can get lost in a ‘phone box, my room was quite hard to find…two lifts worth of searching and I finally found it. So, to the first day of the Eurordis summer school. What a weird feeling I experienced. Why was I in a room full of disabled people? Even looking at my own wheelchair I felt as though I was in the ‘wrong place’. Anyway the first day’s events made me realise why a webinar, research and quiz, times seven, was so important.
Day 1: Work! I then attended the welcome dinner, and off to bed! The following day and throughout the week I learned so much. I even took the mic to ask questions a few times. I think it was the second day, after talking to the others, I realised I wasn’t looking at disabilities, I was looking at people, just ordinary people! It made me wonder if that’s why ‘normal’ people see the disability instead of the person (just as I did). I feel ashamed of myself, but also it gave me an insight into how ‘normal’ people see people with disabilities. They see the disability before they see the person!
While at the conference, I ‘adopted’ young George. He came with his dad from northern India. He had only one thing on his wish list – to see the sea for the first time in his life. During one lunch break I got those who could walk to push him to the beach and on another day we went to a beach café. Of course, bossy Liz got others to push him there again! Since then we often talk via Messenger. I also talk to a few others in different countries – all new friends whose disabilities I don’t even think about now.
Nicky spent her holiday in her home village in Devon while I was away and picked me up at the airport. The good thing about being away is coming home, and I had come home with so much new knowledge.
There are those who fight their disability and those who let it rule them. I am in the former group. I go to the supermarket on my mobility scooter most days. Many people wave as they drive by, so I wave back, despite not knowing who they are! All the staff in Morrisons supermarket know me, and don’t see the disability. If there is something I can’t reach on a shelf, I wait for a couple heading my way and tell the wife: “I’ve been waiting for a good looking man, so may I borrow your husband?” Whoever it is, I’m sure I at least put a smile on their faces for a short time.
A few days after getting home I went to see Rod Stewart at the KC stadium. I was called on Face time by one of the people I met in Barcelona, so having swapped the ‘phone around, she was also able to see the gig.
One incident to report: I was cleaning the deep fat fryer. Idiot here empties the hot oil into a plastic milk container. The oil was too hot and melted the plastic and as I had nothing on my feet, the hot oil burnt both feet. I spent a while sitting with my feet in cold water before we attempted to clean the floor. I had to be completely oil free as I was fearful of slipping on anything.
I went to a ‘FindaCure’ meeting in London, then spent the weekend with Claire in Brighton, and we’ve started changing the bathroom into a wet room. This has been my busiest month so far this year.
July 2016
Must get rid of my flip flops, which I wear when gardening. I have had several falls but each time I forget and use them again, and fall! They are now in the bin.
I go to the supermarket on my mobility scooter and on the way back I pick dandelions for my tortoise (George). One day I saw some and rode over to pick them, only to find that as I bent over I had caught the ‘go’ bar. So consequently I fell off and my mobility scooter ended up in a bush. Have to say I was more embarrassed than hurt (but I hung onto the dandelions).
During the month we looked after our neighbour’s dog. She’s a Bizon Frise called Peppa. This small white bundle of cotton wool arrived and for two weeks she tried to wreck our house. Everything had to be put out of her reach. Made us realise the likelihood of us getting another dog is questionable. Whew! She also ate my glasses which were on the bedside table. Still working on the wet room. Apart from that there is nothing more to report.
August 2016
We had a visit from our niece Emma, plus husband James and their young daughter Harper. Emma hasn’t visited since she was quite young. Harper fell in love with George, so we were in the garden most of the afternoon. James works for the NHS and the government, so he told me if I had any questions I should get in touch with NHS Choices. I took his advice and used it. Thanks James.
It was my brother Martin’s 60th birthday. Sue wanted a surprise party for him, so David secretly booked the golf club and we asked Martin if he was free for a “charity” event at the golf club. A couple of days before the party he asked if we wanted a lift and it was clear he hadn’t clicked what was really going on. Everyone gathered at 7.30pm with Martin due to arrive at 8pm. But then Sue phoned to say they’d got lost! Eventually arrived just 20 minutes late, so no real harm done and he hadn’t twigged what was really going on until he entered a packed room. Quel surprise indeed! He was filmed as he came in but, despite his smile, he was obviously dreading it. The food, music and people were fantastic, and it was the first time all of the seven siblings had ever been in the same place together. Naturally, bossy Liz got us all together for a ‘photo shoot. I had to be at one end as I am the oldest, and at the other end was the youngest (brother David). A VERY good night was had by all, even Martin!
We went to see a band doing a charity event in Hull featuring committee member Tony. He plays almost everything, but doesn’t sing. That post is filled by his rather hunky brother who I think should be on the XFactor, as his voice is so much like Paul Rodgers of Free and Bad Company.
September 2016
I had a spray tan and hair cut before we headed down to Claire’s in Brighton at the start of our late summer holiday. The following day she drove us to Gatwick where we set off to Gibraltar! We stayed on a 5-star moored cruise ship which was absolutely lovely. My only problem was that everything in the room was done by remote control (no good for technophobe Liz).
I have been to Gib twice before, but it was David’s first time. We didn’t waste one minuet during the time there. I was shattered every night. It’s not very disabled friendly, so we spent quite a lot on taxi fares. We had taken a taxi trip to the top of the rock and St Michael’s cave was as beautiful as ever. Another day we used the cable car up the rock, and were greeted by the Barbary apes. Never take any food with you is the advice. Of course, I did as I had bought some Spanish tomatoes and they were in my bag. Don’t have a go at me: Remember, I have memory loss. Anyway, as soon as we got to the top one ape was unzipping my bag, so I whacked its arm and told it to bugger off, which it did – straight onto a girl’s shoulder. She was amused by it, but didn’t realise it had unzipped her backpack and ran off with the contents. Despite the fact they are wild animals, I am not frightened of them. I think if one is stupid enough to antagonise them, then they would bite. So just let them be.
We went to Africa, but first had to go in to Spain to get there by ferry. Taxis in Gib can take you to the border, then after passport control you get a Spanish taxi. Bit off a faff getting the wheelchair in and out of taxis all the time, but of course I didn’t have to do it. We went to Morocco, but I think it was a bit of a con. However, we can say we have been to Africa! We took a boat trip in the bay of Gib to see the dolphins. It was soooo relaxing. They are so beautiful. As it was lovely dry heat there I was less stiff which made a big difference. Anyway, at last the holiday finished and we flew home. I love going away, but I also love coming home. However, I had had to cancel three rare disease events to be able to go on holiday. We went to stay with David’s brother for the weekend, which actually extended the trip until Thursday as I was going to two events in London on the Tuesday and Wednesday. I was up at 5.30am each morning to travel with Jane into London. Both events were good. The first was with the Genetic Alliance (I was filmed there, I think it’s on our website?). The second was for Commissioning in Healthcare. One of the things they spoke about was saving NHS money. I asked about SCIg. (Subcutaneous Immunoglobulin) but no-one knew nothing about it, but I am still (December) writing to NHS Choices and the government to find out more. On the train journey back with Jane on Wednesday I started coughing and the following morning an unknown bug had started and I felt quite ill with a nasty cough.
October 2016
I signed up for an online course on ‘Improving healthcare through clinical research’. Don’t ask if I have even started! At the end of the month I saw a GP about my ‘bug’. He gave me antibiotics, which did clear it up, but if one has a cough for more than three weeks they should have a chest X-ray. Nothing else to report as I felt too ill.
November 2016
Not a good start to the month as I attended a funeral for the father of one of my sisters-in-law. Such a shame as he was a lovely man.
Nicky and I went to London to see the Oxford Street lights. She has never seen them before. We arrived about noon and I took her to my favourite café for lunch. The rest of the day was spent finding places to see that were in my book about London’s bizarre and curious. Nicky did have to push me a bit, but I had taken extra diazepam, though perhaps not enough.
The following day I sold poppies in Morrisons for three hours. It was ok as I could sit on my mobility scooter. A good day for a good cause.
My best friend Vanessa caught her heel coming out of a restaurant and broke three bones in her ankle and tore tendons. She spent a week in hospital, poor thing.
My favourite time to eat is about 7.30-8pm, but I’ve found if I eat about 6pm it means I have the whole evening, unless the ‘phone rings, and that has happened a number of times. Not the home ‘phone, but the charity ‘phone. I just cannot answer it, so David puts my meal in the oven to keep warm. He does quite a lot of cooking these days which I’m sure he enjoys (not).
I fall asleep early every night, but one evening I fell asleep in the middle of doing a blood sugar! All there is to do is put a stick in the monitor, prick finger and the answer comes up in 10 seconds. How did I do that?
I saw another GP to ask for a chest X-ray because of my infection and had it done the following day.
I was Face timing another SPS-er in the US, when I heard David calling for me as the living room ceiling was dripping. I was stuck between a rock and a hard place. I managed to grab a bucket, but I couldn’t leave my friend on the phone. Priorities, you know! So I left Dave and Niagara Falls in the living room to it… Meanwhile, my more important conversation began quite happily, but then she had tingling in one of her fingers, then her thigh began spasming. She was getting so much pain and was very distressed. Luckily her mum was passing, so help was at hand. Her mum asked me how long it had been happening. She went to get a wheelchair while I stayed on the‘phone and told here a joke about the nun seen wearing a tee shirt, along the top it said: “I am a virgin;” across the bottom it said: “This is an old tee shirt”. So then went to hospital and some days later we spoke again she told me she wanted to get a tee shirt like that one! Anyway, back to the living room where part of the ceiling had come crashing down! Turns out it was the new radiator in the wet room that had sprung a leak. To fix it we had to cut a piece out of our bedroom wall to reach the pipes. As brother Martin always says: “It’s not a problem, it’s a task”.
The next outing was to the Outlet near York with Nicky. Good day, but once back in the car I wanted to do a blood sugar. Strips and pricker found, but no Omnipod ! Nicky went to the only place we stopped for coffee, but to no avail. I change the pod every three days, and yes of course it had to be tonight when I should have changed it. I rang the company only to be told a new one would cost almost £300. David rang Nicky and asked her to search the car, which she did and found it. Phew!
December 2016
Went to an Xmas market in Hull. Fab. I have now finished all my Xmas pressy shopping. David and I went to Martin and Sue’s for dinner, plus all the other guests, Claire and partner Gary, Tom and partner Sarah, brother David and wife Sarah. This wouldn’t have happened if Claire’s pregnant daughter had not have been in hospital with a urine infection, as the only people invited were David and Sarah and Claire and Gary! The starter was amazing. Martin had made a wooden thing which reached the entire length of the table and was completely full of Mediterranean starters which Sue had made. Super food and super family.
Got Chris a polo lesson for his birthday. It was so cold, but thankfully he wore thermals and had a really good time, although the man running it was so full of himself, a real know-it-all who kept getting his “facts” wrong.
The next event was pre-Xmas drinks at Simon (brother) and Janet. They live in the next village and the house was full of family and friends. As usual I had the charity cards with me and one woman who happened to be a social worker was very interested as she thought she knew someone with SPS who is not aware of the charity.
We had Xmas dinner at my brother Steve’s home instead of Martin’s. All the family was there and it seemed all have done something apart from me. Still, despite my lack of contribution, it was a lovely day.
Thankfully Xmas is now out of the way. I went to London and stayed overnight with Karen whom I met at the summer school in June. She lives in Switzerland, but has family worldwide. We had a super time, apart from the fall I had in the flat. No real damage done.
We had New Year’s Eve dinner at Martin and Sue’s. By 9pm Sue had her pyjamas on and by 11pm we had all gone home! At midnight we tried to send up a sky lantern, but it was too windy! So ‘bye to 2017 with some good done, but no research imminent. Just realised, as I update this from my calendar and not my note book, nobody really knows what else I do! Perhaps next year I will use both.
January 2017
Remember my friend Vanessa (the one who broke her ankle in three places)? Well, she has had her cast off now, but can’t get into the bath, so comes here to use our wet room. Well, that’s what friends are for!
At last we don’t have a hole in the ceiling any more! Nice, friendly, Gary plastered it, now it’s a case of waiting until it’s dry before he can paint it.
I was on BBC Radio Humberside this month before going to Australia and New Zealand. Of course (silly me), I forgot to tell you it was our Christmas present from David to us. Three weeks of flying, cruising, train journey, helicopter rides and more. The ship was 16 decks high and when using the lifts I found it so funny when people avoided the glass floor which was at the back of said lifts, especially as that was where I would normally stand because it’s easy to see all the decks.
I tend to walk with the wheelchair and had more than my fair share of odd looks and funny comments, which worked to my advantage as I was able to give out so many charity cards. First downside was when we flew into Sydney – no wheelchair! So the airport lent me a relic from the 1940s. Three days in Sydney, two-and-a-half without my wheelchair, and when it did arrive the self-propelling wheels were scratched and there was some damage to the back, too. It had been left behind in Dubai. (To make matters worse I hadn’t packed any underwear so, sadly we had to go shopping!).
We stayed in a lovely hotel overlooking Darling Harbour. We began the first day on an open top bus – always the best way to begin a holiday. It was so hot, my ‘phone stopped working. Would that ever happen in the UK? I think not. That was the day I got a tan! We took a helicopter ride and saw the opera house and the Sydney bridge. We certainly got a good look at Bondi beach and all of the other quite fabulous views.
Back on board, heading for Melbourne. We had arranged to meet up with fellow sufferer Tanya. She came to visit in 2010 to celebrate her 40th birthday. We saw her and her hubby waiting for us, so a quick ride (chatting all the time) to a coffee shop, then on to a market. We had a lovely day with the two of them, but I felt so upset as she has deteriorated far more than me.
We had to stay an extra day in Melbourne as the Tasman Sea was too rough to cross. When we entered New Zealand’s south island, it was spectacular! Gliding along the Milford sound was, well unless you’ve done it, it can’t be put into words just how it looked/felt. I think it’s the most beautiful area I have ever seen.
While in NZ we had a helicopter ride, a train from Auckland to Wellington, stayed overnight and flew back. On one of the stops while on the train, we had returned to the train and two minutes later someone pulled the ‘stop’ switch. The guy’s wife was still at the station. I wonder if David would have done that if it had been me, lol.
As always, I got a cactus while on holiday, this time in NZ. The man who sold it told me Oz would not let it through, so in my mind it was an even better challenge! (I did get it home, and intact!).
While in NZ I wrote to the NZ rare disorders organisation with details about SPS. We made a number of friends, two of whom I am still in touch with. So basically that was (some) of January. Mmm, bucket list holiday, been and now gone.
February 2017
I was on the local BBC radio station again; the host recognised me and asked how the holiday had gone. Apart from telling him how wonderful it was, I was also able to tell him I had used all of my charity cards!
At last I have finished helping someone else fill out their PIP form and written thank you letters to the people who took part in an auction one of the members had organised which raised £1,111.51. Also, my nephew, Willum, who raised money for the charity when he did a sky dive on his 16th birthday.
A busy month: I joined Eurordis’s rare barometer; had had an email from a journalist who wanted to interview an SPSer – rang her back with a number; got involved in a webinar with Findacure. (Forgotten what the subject was); and went to the House of Commons to represent SPS for Rare Disease day. Anyway just to let you know I am always busy. I can’t be bothered to go through ‘Liz’s everyday doings’ so next month will be……..don’t know!
March 2017
At last, our son Chris has got a flat. Funny that it overlooks the park I used to play in as a child. So as usual we did the parent things - taxi driver and cash machine! He now has a fridge freezer, washing machine and a Dyson. I think I have mentioned before that he has Asperger’s, but since he has had the responsibility of living independently, he has amazed us. In the past he would leave his problems for someone else to deal with, but now he is sorting everything himself – fantastic. He can always walk down the avenue to my brother Martin and wife Sue if he needs/wants anything.
I have decorated the office/study and even got a new carpet and blinds, so I am trying to keep it tidy, lol. We were invited to my nephew Liam’s wedding, but I was too tired to go. Wish I had, as when David and Chris returned they told me what an amazing night they had. Chris was very giggly as he had had two pints of beer.
I had been invited to a three day Scope meeting in London. Unfortunately, I couldn’t go because the webinar in which I took part was more important for us SPSers. I was being messaged or called from three people asking why I wasn’t there. All were from the Eurordis Summer School I attended last year.
I am now 65! My birthday wasn’t really the way I had expected it; in the morning, David and Martin went to test drive a Tesla, as Martin will be getting his next year (he thinks/hopes). Mid-day David had his six weekly infusion which leaves him wrecked for, at the very least, the rest of the day. I was determined not to cook, so we had a take away. We had celebrated with family the night before, dinner at Lucca’s, one of my favourite restaurants. David bought me silver earrings and matching necklace. (My sister has told me that when I croak, she wants my jewellery!). The best pressy of all was driving my car on private land. David took me and despite his fears, I did it. However, I will never apply for my licence again, but I was happy all evening.
April 2017
I had a call from an old school friend who had lived and worked in Lanzarote for 12 years.We arranged to go to Hull (City of Culture 2017). Had a fond chat about our time at school and life in general. I was determined my friend, Pauline, would not push me in my wheelchair, but why, would I feel embarrassed? Perhaps because in my head I am not disabled! Although I had a couple of slips while pushing the wheelchair, I managed to laugh it off, despite feeling scared. I asked why there was no ramp for those in wheelchairs to enable them to get to what is known as the Beverley gate. It was erected in 1642 when Sir John Hotham refused Charles 1 entry into the city, the start of the English Civil War . Well, history lesson over...
I have taken part in two webinars, and been to one meeting in London this month. I don’t seem to have an ordinary life outside SPS. It was David’s birthday this month, so as usual he orders what he wants on line and when it arrives I wrap it – easy! We did eat out with the gang, though.
May 2017
I took part in two webinars. No London events this month. Had my diabetic eye screening. My HBA1c was fine (7.1 in old money). Diabetic check-up was fine. However, I have to say, if cutting off my left foot meant I would then not be diabetic. I would have it done tomorrow!
With all my walking aids, I still wish I was driving, but after having crashed it during a hypo, I won’t risk it ever happening again. (As I said in March). My step mother and I went to spend five days with my sister in Brighton. Apart from all the fun we had, there was an evening when we went to an Italian restaurant. It was light when we went – up the hill (pushing the wheelchair) and sitting in it to go down. It was dark when we left, but despite the road having barely any lights, we proceeded in the same way back. However, sitting to come down the hill, I couldn’t see one of the driveways and the wheelchair simply ran into the road. If a car had been coming, they would not have seen me, and it really was a near-death experience. My fingers on both hands had been caught in the spokes and despite the pain from that, which lasted a few days, at least I was alive!
I saw my GP as my nails break as soon as they grow. She began treatment (nail polish) for a fungal infection. Home-wise, we have had new doors fitted downstairs. They all have some glass in them which means no real privacy now, but it is lighter. I now have a new social worker and had my first chat with her. Nothing to report.
June 2017
I went to a Findacure meeting in London, but stayed in a hostel the night before as it started at 10.30am, and after the last one when I got the 6am train I thought it would be a better idea. It wasn’t! Yes, it was close to Kings Cross station, and I had my own room, but I had to share a toilet, and the shower and breakfast were downstairs. So I won’t be going there again.
Only one webinar this month, about medical research. It’s a joke. When will SPS be researched in the UK?
At last, all my hard work has been worth it. We have had the first of three ‘meet ups’. This was for the English sufferers. It took place at the Brain Charity in Liverpool. I gave everyone a sticker with their first name and the area from which they came. After my short talk and giving out of literature, I was so surprised at the way everyone talked. It was more like a family reunion. One woman from Liverpool couldn’t make the full event as she had had a tooth removed that morning, but arrived in a taxi just to give all a hug, and then back to the waiting taxi. Those who stayed had booked in at the Liner Hotel, and still the fun carried on. I shared a room with one of the other sufferers from Sussex. She talks as much as I do, so we had to set an alarm as we were so late before one of us said goodnight for the last time.
I met one of the sufferers at the folk festival in Beverley. We had arranged to meet, but having rung his mobile numerous times and left messages, I decided to go to each tent and ask if after the next song they would ask if he was there! Fortunately, it was only the second tent before I found him. He now wants to come to the next committee meeting, fab!
Well, I got my blood test results back, and I am borderline coeliac and pernicious anaemia. I could cope with the regular injections for PA, but not another diet for coeliac! Anyway, she cut my thyroxine to see if that was the reason for my ‘every time a pee, there’s a poo’. She asked if I had lost weight; no, I’m still 7st 10lb. Although because of the hyperlordosis I am now only 4’10” (sorry, but I only work in old money).
July 2017
I have, over time, joined so many organisations I don’t know if I’m coming or going. The organisations are not so bad, but Twitter, Instagram, LinkedIn etc, the mind boggles – well, mine does! I feel bad, (well a little bit) as David cooks on a fairly regular basis as I am either on the ‘phone, laptop or messenger. There have been days when I have two people on messenger on the laptop and actually talking to someone else via messenger on the ‘phone.
This month is the beginning of a long journey for me, as I have entered the Cambridge Rare Disease Summit. My friend and fellow sufferer (different variant) Ruth is helping. We have to produce an abstract and a poster for the summit. It’s hard work, but thankfully we have the help of two of the best neurologists in the UK. (I am writing this in August). We have had the offer of help from another neurologist too, but we will stick with the ones we have. By August we have finished! There is video, a patient journey, and a book on the poster. I have no idea how many Rare Disease groups will have entered, but the top five will be chosen to take the stage and talk about their illness. The audience will be clinicians, pharmaceutical companies, medical students etc. If I am one of the lucky five I’m sure it will remind me of the days when I was a member of Beverley Theatre Group, thankfully I was usually the prompt, but whenever I did act, I would have given away my house not to go on stage – so scared! Unfortunately there will be no last night party, I expect it will be pack up and back to the hotel – exhausted.
Anyway, back to July. So many hospital appointments for both of us, yuck! I missed a webinar as I had to see my neurologist. I told the nurse I had to see my neurologist, not any of the others, and she obliged. When I went in, my first words were “I don’t need you for me, I need you for the charity”. I told him: “I know you won’t want anything to do with this, but I need your help”. I read out the list of questions and he answered them all. He gave me the name of a neurologist who would be talking part in the Scottish meeting for neurologists, and told me to write to him asking if SPS would be discussed.
I managed to listen to two webinars. So, back to life as we don’t know it. Had a day out with Vanessa, pottery with Nicky, went with David to see the Frogg Brothers, in which Tony, a member of the committee, plays. His brother is the yummy singer.
Chris has been put on some medication and his doctor told him he should only keep a week’s supply with him and leave the rest with us. Great, that means we see him every weekend. The downside is that I am expected to do a roast. Not good for someone who dislikes cooking! He really does seem to be more active now, well with fun things. I don’t know when he will be able to work, but I think baby steps are the way to go.
August 2017
At the pottery class I finished my tortoise and will wait for it to be fired, and picked up the four plant pots I had made. Really like them. Had a lovely meal out with Martin and Sue. Had a GP appointment for something I can’t remember. Claire and I had three days in London which was really good. I used Tesco vouchers to pay for a riverboat cruise on the Thames. We went to Greenwich, which I have wanted to do, but the climb was a killer. A very kind stranger pushed me up the last bit of the hill. Why didn’t we go on the rout for the disabled, it would have been the sensible thing to do? Anyway we did come back that way. We stayed about two hours, but there was so much to see, we could have stayed for a full day. Of course, we took pics of ourselves standing on the meridian line. Saw the Cutty Sark, but had to leave for the last boat back which was a hoot, as we had a running commentary all the way back to Westminster Bridge. We walked around St Pauls and across the Millennium Bridge, during a thunderstorm, obviously bellowing out ‘singing in the rain’. Can’t believe I spent three days without thinking about SPS. However, came home to so many emails and fb posts, I was brought down to earth with a heavy thump.
Well, the story of the month is about a steak pie; my dad’s best friend and his wife have moved into a retirement home which is on the way to the supermarket. They both complained about the food, so I told them I would make them said pie. While cooking the meat in a pressure cooker, I thought it sounded ‘different’, so took it off the heat and opened it and it exploded! I was covered in beef, onions, gravy etc. All I could do was shout for help as I was totally rigid. I couldn’t move and being so stiff, and with a scalded hand, I shouted again and eventually David came in (from the garage). So the spring cleaning began! Obviously I was first, but the kitchen needed really cleaning – thank heavens I was the injured party so didn’t help at all. Once I had calmed down I had yet another shower. Then made the promised pie. Off I went on my mobility scooter. Arrived, meal delivered and home again, only to find David said it was almost inedible. Why oh why was this one so awful? (I had eggs on toast). As the days went by the blisters on my left hand grew and grew. In the end, after the biggest one had popped, I had to go to the minor injuries unit, where it was dressed. Then told I had to see the practice nurse every two days for re- dressing! So, after two weeks of back and forth on my mobility scooter I was truly fed up. I practically begged her to give me the ointment, plasters and dressings so I could do it at home. No joy as yet.
September 2017
I have probably mentioned that Hull is the city of culture this year, so I went to the (annual) Freedom Festival. Super event with as much music as possible and so many people dressed in appropriate clothes doing daft things. No rain, no wind made it a fab day. Anyway as usual back to nurse every other day until the 18th when she gave in – whoopee! So now with a bag full of gubbins I am now doing the dressings at home. So, events this month, I have been to a workshop in London and taken part in two webinars. The very best part of this month was when I got a ticket for the Royal Ballet, unfortunately I was not in the theatre, but it was live streamed to the Queen’s Gardens. No umbrellas or chairs were allowed, but being in a wheelchair I had my own seat and a waterproof coat. Rain had been forecast, but the sky remained beautiful. I tried to video some of the performances, but saw when I got home that it hadn’t captured anything I had watched. (Should have taken my ipad). I had to leave before it finished to get the bus home – 10.50pm. Pushing uphill and sitting downhill. It will be a night I will always remember. Technophobe Liz here began an IT class. Nicky wanted to go too so four weeks later, we both realised we knew most of what was being taught. £28 down the drain.
October 2017
We had a bit of a scare this month as my brother David was having the same heart test my dad had, after which he died, aged 54. David was the only one not to know about it, but the rest of the family spent the day on the ‘phone to each other. Fortunately, David did survive it, but they put in a stent. So I have three brothers with heart problems!
Anyway, let’s change the subject. For the last two months my SPS friend Ruth and I have been working on a poster for the Cambridge Rare Disease Summit. We have had a lot of help from two neurologists, one in Sheffield and one in London. It has been hard work, but we had a patient journey, a video, a poem which with a click of a switch each line would come down and of course the science part too. The top five would be on stage talking about their condition and showing their posters. Unfortunately, I was not chosen to be in the top five, however I managed to hand out over 40 sheets of information with three headlines; For GPs and Clinicians; For Researchers; For Pharmaceuticals and NHS. They went like hot cakes. The posters were available for all to see. At the end of a long and tiresome day, it was Alistair Kent OBE, head of Rare Disease UK who took the stage. At the end he spoke about me (available to see on the website). As I thanked him I felt a bit awkward, as I had asked him earlier why he hadn’t trimmed his beard for such an important occasion. He had told me he was growing it as he would be a Father Christmas in December. So if they pulled the fake beard off – well the kids would believe he was indeed the real FC! During the evening everyone mingled and I spoke to a (rather good looking) Italian neurologist. He was interested in SPS, but sadly not interested enough to follow up… One Pharma company has stayed in touch and asked if I would care to visit. A few days later a box of chocolate arrived. I rang him to ask why he had sent them, his reply was “Because I liked you”! Of course he didn’t know I was diabetic, so everyone else enjoyed them – apart from me.
The following day I had a look around Cambridge. I booked for a punt on the Cam, to reprise what we did long before SPS was a part of my life. I don’t really remember getting on the punt! However, despite an Aussie guy who looked through my bag and found my glucagon injection, with which he jabbed me, I was still unconscious so an ambulance was called. The only thing which led anywhere toward being less unconscious was when he used his knuckle on my sternum. (That hurt). So, off to Addenbrookes hospital. As soon as my blood sugar was high enough, I discharged myself. I got the bus to Cambridge train station, and sat in a coffee shop for four hours, waiting for my train. Once on the train I knew my insulin pod needed changing at 9pm, which was ok as that was when I would get to Doncaster but, at Doncaster I had yet another hypo. Fortunately, there was a GP on board. He got me to drink warm milk with sugar, and a sandwich. Not until my blood sugar was ok were they able to send for paramedics. Deepest apologies for those who may have had a connecting train to catch, as we must have been almost an hour. And to Dave who had to drive 40 miles to come and pick me up at midnight.
We also had a committee meeting and now have a new chairman. (I ensured everyone had a job). My Aussie friend, Dusty, mailed me to ask if he could come over. He offered £1,000, but as David didn't know him and felt he couldn't cope with two disabled people in the house, I had to decline his generous offer. He thenoffered the same amount for us to stay with him in Oz. David couldn’t manage such a long flight, so I said I would go on my own. Then the battle commenced. David told me if I intended to go alone he would not help me in any way, not even drive me to the station. (Worried about my diabetes) but suggested my sister Claire went too. David would pay her flight and her salary for the four weeks. Hell fire, we will be living on bread and water for the foreseeable future. So we had our travel counsellor, Amanda, arrange everything. Then I thought: why not visit my pretend adopted son (we met at the Eurordis summer school last year; he has Ataxia) in India on the way back?
November 2017
Did my duty at Morrisons – selling poppies for four hours. Had a lovely night out with one of my sisters-in-law, Janet. We went to the New Theatre in Hull to see the Dusty (Springfield) show. Sitting next to the sound guy, I was able to see which song was next on the list. We got there early so we could park close by. Doing this meant I only needed my three-wheeled walker. Only had one workshop and one webinar this month. The only stressy thing this month is the present buying. I never know what to buy anyone. No real news this month, apart from pretty much fed up. (Time of year thing).
December 2017
On the first of the month I went to a charity function in Hull. It was an Elvis tribute night and the money raised was to be shared between both SPS and Fibromyalgia. Liza has Fibromyalgia and is a friend of one our SPS members. Liza wrote, and recorded, a lovely song called ‘Behind a Smile’. It’s about having an illness, but trying to pretend it doesn’t exist, and how one copes with their feelings.
Disaster struck when Nicky and I went out one day. Just before leaving I wanted to do a blood sugar, but couldn’t find my Omnipod. The last place we had been was a café, so went back – no joy. Once home I had to call my friend Vanessa as her husband is also diabetic. Fortunately, he had a spare meter and having got that at least I could check my BS and as I have insulin and spare needles at home I was OK. To buy another Omnipod pump would cost £300. The following day Nicky found it tucked down the back of my seat in her car. Phew, was I relieved.
Only one webinar and no workshops this month. One of my brothers, Simon, had invited us to a pre-Xmas drinks evening, but so many people were unable to go, they postponed it for after Xmas. Sadly, their whole family had the flu and the event was cancelled.
Still working on the adventure to Aus and India. So Xmas day was spent with my brother Martin and his wife Sue. Chris joined us and we had a super day. Another friend, Karen, who I spent a couple of days with in London last year was going to come and stay for a few days until she found the train ticket costs were over £300. So she (more cheaply) flew home to Switzerland. Another disabled friend! Just a note to say not all my friends are disabled, lol. On our wedding anniversary, which we usually forget about, we decided to fly a Chinese lantern, but alas no, it was raining! New Year’s Eve was just the two of us watching the fireworks in London on TV. And there endeth 2017.
January 2018
Happy New Year all! I had an appointment to take part in a two week trial using an Abbotts Freestyle Libra. It’s a small patch which one places (in my case) on the upper arm. The small monitor is simply swept over and it gives a blood sugar reading. It also shows if BS is going up or down. I expect Theresa May has one. Two weeks later I found I would not be getting any on the NHS. (: I have said this a number of times, but I would have my left foot chopped off, without an anaesthetic, if it meant I would not be diabetic. It’s the only thing in my life I hate! Anyway unfortunately that will never happen.
I had coffee with my friend Alison. Had a meal out with friends Evon and Mike. Meal at home with Martin and Sue. Could my life be any fuller!?! On the ‘work’ front, I have been involved with a webinar about Running a Rare Disease Patient Organisation. I went to a Findacure workshop in London. The best one yet, as it was to do with Peer Mentoring. I was lucky enough to have two: Rick, who is a doctor in London, and Eleonora, a doctor in Italy.
February 2018
This month has been much the same, entertaining, webinars etc, but so much to do for the holiday. Nicky took Claire and I to Manchester. We stayed overnight in one of the hotels there, because our flight was at 7.10 am. Check in 4.10am. Even at that time of the morning we were so excited. As it was Rare Disease Day, I had written a letter for the pilot asking blah, blah. One of the crew came and told me he wouldn’t be able to do it as they have to be notified by email in advance. The flight was a long one despite the change at Abu Dhabi, where the pilot approached me and apologised but said he would donate to the charity himself.
Then off to Perth. We got a taxi and stayed at a lovely hotel with Dusty, outside of Perth. The following day he drove us to his home in Denmark via a route showing different beaches, all of which were lovely. The following day I was at one of the beaches and got some water from the southern ocean. (Don’t tell anyone about my ridiculous collectable items fetish, I have more!) I have nine samples now. Have any of you tried shark? Fabulous, as was the barramundi, both in batter and with chips. The funny thing was it was the petrol station where we got them. Dusty took us to a wine festival, Claire and I tried three tasters, and then entered the grape squashing contest. Sure it was fixed as the couple in the next barrel were much bigger than us, and one was a guy! After getting out I found my shorts were stained with black grape juice. Nice, not... One evening we all went out roo spotting with nothing but a wheelchair and a torch, but we saw quite a few. Another day we went to horse riding (having doubled my diazepam). Pluto was the name of the guy who took us out. He really is a true horse whisperer. It was only when he sang that my horse trotted, when he stopped singing, the horse stopped trotting! During the walkabout there was one horse with ‘attitude’, but as soon as Pluto put his hand out, it simply turned around.
Most days we would go out for brunch, same place each day. Some days Dusty was too tired to do things, so he would let Claire use the car. Having checked his medication I noticed he was taking one med which he should have stopped, and so every day, every four hours, I had to remind him to take what he needed. We had been on so many red dirt roads and seen so many of the native flora and fauna we were all a bit tired. As Dusty only has wi-fi on his ‘phone, it meant Claire and I had to go out each night to messenger home, so if anyone wants to know the wi-fi hot spots in Denmark, just ask!
On the 13th Dusty drove us back to Perth where we stayed in a motel for two nights. I got in touch with Michelle, an SPSer as we had promised to meet. I had a call back inviting us for dinner. We both had a quick shower, and then a member of staff said someone was waiting for us, so still with hair wet we bolted out to find Michelle and her mum waiting for us. Chauffer driven to Michelle’s home and we were fed a super meal. Lots of chatting about SPS differences, and lots of other things. Michelle’s mum drove us back to the motel at 10pm.
I had booked us both in for swimming with dolphins, so a 6am start. Quite a lot of people on the boat and unfortunately Claire and I were in the same group, which meant we couldn’t video each other. We were meant to hold onto the belt of the person in front and just go with the flow. Obviously, I hadn’t listened to that bit and with snorkel gear on, I decided to swim as well as holding on. That’s when I had a panic attack. I was so scared because when I’ve had them in the past I have stopped breathing. The instructor knew immediately and we were back at the boat straight away. It took three people to get me aboard. Despite the fact it was raining, they took off the top part of my wetsuit, put a towel round my shoulders and gave both water and a cuppa. There were two other women who were afraid, but I was not going to be beaten and did go in again!
So much more to bore you with, however, on Thursday 15th we began our flight to India. Back to Abu Dhabi, then to Hyderabad. George (the dad) met us at the airport with flowers, and taxied us to their house. What a joy to see Chandu again. Both he and his sister sadly both suffer with Ataxia (: As the taxi drove us there I couldn’t believe the traffic. There were no pavements and the three lane road served as a five lane road. On the inside people were walking or cycling. Motorbikes carried up to five people, some with babies lying on the fuel tank and almost nobody wore a helmet. Tuk tuks, cars, taxies and buses, not forgetting the animals. The only thing obeyed by all, were the traffic lights! Horns tooting all the time, every driver knew what the toots meant, apart from Claire and I.
While staying there we were treated like royalty. I only had two problems: 1. Despite wearing flight socks my ankles would not go down for the whole time in India; 2. I can’t eat spicy food! So that was a challenge for Gabrielle. As I write, I still miss so much! Claire and I had toast and jam for breakfast, but once I had shown Gabrielle how to make omelettes, we would hear George’s voice calling “Liz come, Liz eat”, but since I showed Gabrielle omelette making, we didn’t just have toast, but we still heard George’s voice calling, after the toast it would be repeated “Liz eat” and the omelette would arrive.
Every day we had such fabulous fruit, mostly from their garden. Yes, George did say “Liz eat” even for the fruit. Hee, hee. We were taken to Hyderabad museum and had a guide! It was a beautiful museum. We had home-made lunch in one of the cafes in the museum. On the way back George stopped at one of the hundreds of market stalls and bought all of us a coconut, but it had been stripped of it’s bark, and simply had a straw in the hole at the top. Another wow event. The following day we went to the Basilica and to the Little Sisters of the Poor, where we met some of the residents (they almost all spoke English). Then we met one of the sisters who took us all in for lunch. Most of that day was spent looking at churches, as they are a catholic family. Once back, it was decided we would visit a family member, Padad and his family. Next to Vagi Kumar, and family. Both families gave us gifts. We got back about 9.30pm, ate and went to bed. I believe we were all shattered.
We all went to Hyderabad Zoo in a rather long taxi (still feeling like royalty). Once inside, I pushed Chandu around the place in my wheelchair. Gabrielle had taken a picnic. It’s a beautiful zoo and the staff really care about the all the animals. On the way back we called in at yet another family, Sudsahakar and his wife. They have 8-year-old twin boys who are so full of energy. One plays guitar, the other piano. All of the houses are lovely and this one had a gym in it. It must be the thing to do as we were given gifts again.
The following day we should have gone to the eldest son, Newton (the English way of saying his name) and his wife to open their Garden Centre, where they grow and sell cacti, succulents etc. The press were to be there too. I don’t know what happened, but we didn’t go. Gabriel took us shopping and bought us jewellery and some kitchen implements for me. That evening I made rice pudding, but I don’t think any of the family liked it! It was market day in the evening. Just watching the way these people are makes one realise how different we all are. A stroll along the road, and then an early night.
The following day we went to Newton’s place. We both had to wear dresses. Anyway, having arrived we were taken to see all that they grow. Later, a photographer was taking shots of us all the time. I cut ribbons and goodness knows what else I did or whatever will happen to the pics. Looking at the time, we realised we had to leave or we would miss the flight home, and despite insisting, it was still a while before we actually left. George took us back to his house, and fortunately we had finished our packing. When Newton arrived with the rest of the family, it was a case of very quick byes to all, and we jumped into his car. We were a bit late checking in, but what a memory we have had! We arrived back the day before my birthday. What a birthday pressy I had. Thank you David, just wish you had been able to share it with me. Sorry to everyone else for rabbiting on so much about India!
April 2018
I’ve had a call from one of my mentors, Eleonora, who set me quite a bit of homework. Another one from Rick, with an email of lists. However, I have got it all done. Had a neurologist's appointment; two webinars, one about the GDPR which will haunt me for some time; and a committee meeting, and decided (at long last) to change the website. That, more or less, was April.
May 2018
The first of the month was a webinar about patient registries. That would be fab if I was considerably younger. So I will leave that to whoever takes over from me. We had a get together in Peterborough. I will say no more about that rather expensive incident! I should have attended a diabetic screening at my surgery, and queue hypo, so couldn’t go!
I love ballet and went to see The Ugly Duckling. It was for children, but it was The Northern Ballet, so I had to go. On the same day I was involved with another webinar and Tony (on the committee) came over to begin work on our new website. Claire and her partner Gary came up north visiting one and all. So lunch was on offer on the Sunday. Yet another webinar, and a call from my mentor, Rick. Saw my social worker and she told me she was able to pay Claire for being my ‘carer’ while on holiday earlier this year.
June 2018
A guy came to fit new blinds in the spare bedroom which I had ‘accidentally’ damaged a month or so ago, lol. I had seen the doctor a week ago as my nails simply won’t grow and now have been to the nurse for an ECG and a test for syphilis! Apparently the two tests go together, but there was a lot of laughing about it in the family, apart from Chris who asked if I had syphilis.. ha ha.
I was away for a week. Firstly to a Findacure workshop, then down to Claire, and back to London for a Rare Disease UK meeting. Diabetic eye screening: I don’t know if I’ve said it before but I would have my foot chopped off without anaesthetic if it I could not be diabetic. Anyway, if I have said it before you will understand how much I loathe it. Tony has been over twice this month and I’ve changed a number of things, yes even technophobe Liz can do that. Another trip to London for a Findacure workshop on fundraising. Well, I really think over the years I have done more than my fair share, so hope I can leave that to others in the group.
July 2018
David’s brother, Mike and his wife Jane, came over for the weekend. Luckily we ate out which meant I didn’t have to cook (yippee). I also went to see one of the committee member's wife doing hand bell ringing. Not really looking forward to it, but it was very good. They also had a choir from a local school and along with the bell ringers they sang one of my favourite songs – ‘Creep’. I had gone on my mobility scooter and didn’t need the lights on to come home. We went to my brother Steve for his birthday party. I got him a 65 balloon. I also got one for his granddaughter who’s birthday is the following week. She is 16, my niece’s daughter. Apparently that’s what she really wanted. Her mum has MS and it makes me wonder if there is a genetic component with SPS as so many sufferers have bloodline relatives with autoimmune conditions. However, the Genetic Alliance dispute this. Another call from my mentor, Rick.
August 2018
This month Mike came for the weekend to play golf with David. I can tell who won by the look on their faces (usually David!). I’ve had more helpful inter-actions with both my mentors. My diabetes really is the bane of my life. Despite having an Omnipod pump, it works in a four hour window which means whatever insulin I have before a meal, it won’t give me any more until four hours afterwards despite the fact my BS is high! It’s one reason why I need to eat early-ish in the evening. I could spend hours complaining about it…
September 2018
David returned the fraternal favour and went to his brother’s at the end of last month (golf, of course). It concided with the SPS ‘Meet Up’ in Glasgow. Despite videoing it, one person didn’t want it to go on the website, but when I get around to it I will put the short ones on of those who would like to be shown (another job to do!). I’m sure I never spent so much time working when I was actually working for a living! I stayed with one of the members whose house and garden were massive. And four cats that followed me everywhere. One slept on the bed with me both nights. I just kept getting lost in the house, that’s how big it was! The ‘Meet Up’ went very well as we also had a neurologist with us. It’s either age, SPS or a combination of both, but it took a few days to fully recover from the trip. I blame it on the latter - after all, in my head I am still in my thirties, as opposed to sixties! One workshop this month, then on a Western Med cruise. Yippee! To feed my obsession, I managed to get cactus plants in each country except Monaco. The only downside was the cruise coincided with a symposium I had arranged to go to in Germany. When he told me the cruise was already paid for, it was no contest! Bit of a bugger, though, as the symposium had two people I would have loved to see.
October 2018
Back from the cruise, always great to get home. While on board I had given the captain a charity card, then wrote him a letter on a ship’s quiz sheet. As we neared the end of the cruise I got a reply from the captain with £20 and a note to tell me he would pass the details on to head office asking for their help, which I thought was sweet of him. As our Rare Disease Day (24th October) is coming quickly, both Tony (committee member) and David have been setting up the new website. The only part I was ‘allowed’ to be involved in was the information to go on there. Anyway, during all of this we have had our garden room, hallway, and downstairs toilet tiled with the same tiles as used in the conservatory. To save me painting, we had the skirting boards removed and used the tiles as upstanders. Good idea, methinks. At the same time, we changed the downstairs loo and included an electric swipe flush. My brother, Martin, installed it and it worked to begin with, then just stopped! I expect going up the stairs to the wet room loo is considered exercise, lol. The 24th arrived, as did our Rare Disease Day. People were asked to send a video which will be put on our FB page, Twitter and our YouTube channel. We had a committee meeting which was a bit argumentative! On a happier note, we had dinner out with our friends. Phew, what a month.
November 2018
I spent four hours selling poppies at Morrisons. Had diabetic check-up where I asked for Freestyle Libre on prescription. I am now waiting for an appointment to see my diabetes specialist nurse. In the meantime, I emailed my MP asking why our CCG is so underfunded. I received a reply stating “…..subject to local approval” He also said “…it will be available in all CCGs from April 2019”. So here’s hoping. We took Martin and Sue out for a meal to thank Martin for fitting the toilet. One workshop in London, then down to sister Claire complete with xmass pressies. I was going to visit another sufferer in West Sussex, but she was being rushed to a London hospital as she has been having full body spasms. So sorry for her. As sister Claire was working, I decided to come home a day early. We ate out again with friends Vanessa and Ray. As I’m a technophobe, David had to book my train tickets to Cambridge for the Rarefest, but found that I could get there but during the weekend there was industrial action on the trains which meant I couldn’t get back until Tuesday. I was really looking forward to going, but ho hum, not to be! Instead of going to Cambridge on the 30th, Nicky and I went into Hull to see what was happening for the end of City of Culture. We began at Hull minster, where we saw a streamed video of Hull’s shipping industry. Then on to Parliament Street, where they had the floor lit with a ‘carpet’ which changed to different things while walking along it. Really clever the way they did it. Then down Whitefriargate where there were some shops showing various Disney films. Quickly moving on, we went to Queens Gardens to see a spectacular screened video. Then to the other end of Queens Gardens to watch a tepee shape which showed how the earth evolved, no religious aspect, just from history as we know it. Time to get warm, so we crossed to the warm tepee tent, but it really was hot in there so only stayed for a short time. As we stood videoing, we met a couple of neighbours. Shame they had just arrived or they could have given us a lift home. So to the bus station we went, only to find our last bus had gone! The bus website had said it should have been 10 minutes after we arrived, but no, they had it wrong and we ended up on a bus which went to Driffield, but did stop at Beverley bus station. I had taken two extra diazepam while in Hull and so glad I did or I would have been in my wheelchair the whole time.
December 2018
I should have arrived home on the 1st, but, as I said, the railways were taking industrial action. Not to worry, there will always be another one. So I kept busy by going through pictures and videos from my iphone, so I could name and date them. I can’t believe Chris is 27 (makes me feel really old, lol). We took him to Figaros for his birthday meal and he stayed with us until the weekend. He, like David, appreciates anything to do with (among other things) Marvel comics, so he got a full size cardboard stand mount of Dr Strange. Didn’t realise he would go ‘strange’ when he put it up! He suffers with night terrors and had to move it to his kitchen so he wouldn’t see it when in bed! We met up with family members for dinner at Papas, a super fish and chips restaurant. My insulin pod needed changing at 9pm which meant that throughout the meal it kept beeping. The following day was pre-Xmas drinks at another brother’s (Simon and his wife Janet). David had been to a car party in the afternoon. When he came back I was having a severe hypo. I had three that day! I saw my diabetes specialist nurse a couple of days later, desperately wanting to get a Freestyle Libra, as my MP said all CCGs will be funding it by April 2019. I had a Facetime talk with Sean who works for the rare funding team. He lives in Jerusalem. He has a rare condition which only affects Jews, but can’t remember the name of it. We were supposed to talk again, but the days simply flew by. We had friends, Jeff and Jenny, stay over and listened to all their journeys around the world. Jeff is quite high up in the Masons which means he travels a lot. He and David were together the night we met. It was David’s turn to choose the girl and ask for a dance, and he chose me, which cheesed off Jeff as he was also going to ask me. Xmas was spent with Martin and Sue, but my blood sugars were high/low all day and we were home by 6pm. Boxing Day: Chris came over and we did the opening presents bit. I cooked an Xmas dinner, but my blood sugars were just as bad as the previous day. David had/didn’t have his last phenytoin infusion as a) they couldn’t find a vein and b) despite knowing his fear of needles, he was the last in line, which made him even more anxious. So much so that when they failed to find a vein, he’d had enough and left. On our 38th wedding anniversary David had ‘man flu’ which continued for a few days. We watched the fireworks on TV, then went outside to send up a Chinese lantern but the wind got the better of it and it set fire to itself. I videoed it and after the laughter stopped I looked at the video only to find about ten seconds of nothing but black! Despite being a technophobe I think I have problems with videoing, too. Forgot to tell you about my crash while using my mobility scooter. Well, both I and the woman’s car I hit were ok. Not even that sure it was my fault (long story). I’m sure I will have left out a few things, but SPS-wise I only take diazepam and apart from a few bumps and bruises I am still surviving. Bye bye 2018. Happy and healthy 2019 to anyone reading this.
January 2019
My mobility scooter was insured, so they picked it up and fixed it. Great start to 2019. Life, the house actually, goes a bit downhill for a while. We had no hot water, so in comes the plumber. I couldn’t believe neither of us could have a shower for three days. We had to call out an electrician as the new downstairs loo wouldn’t flush. It has a swish button which didn’t want to work (at least it was a keep fit exercise going to the wet room each time nature called). He fixed that and, while he was here, David’s precious garage floor lights. I went to another Findacure workshop, this time for ‘Supporting your patient community,’ which meant the 6am train again. Next Mark the joiner arrived to fix the things which have been bugging us for ages eg; broken letterbox, whistling windows, Chris’s non-shutting wardrobe and so on. We went for a meal with my cousin Irene and her husband Barry. I hadn’t seen her in years (long story). A pleasant evening of reminsicing. I went for a diabetic check and saw my Omnipod nurse. She downloaded my readings and filled in a form to enable me to get the Freestyle Libra on prescription. WOW fab! (If it happens).
David opened his ipad on the 24th to find Tony, a valued committee member, friend and musician had died in hospital after having a chest infection. A chest infection can be an indicator of sepsis. However, no antibiotics could help him. He had SPS and type 1 diabetes. Despite being almost blind, he was the one who set up our new website, world map and many other things. He could play virtually any instrument and could re-string our guitars in minutes. He would come in for a jam with David while his wife was shopping. It felt that it was only yesterday we were at their wedding. We are both incredibly sad.
February 2019
We went to a party to celebrate Tony’s life. I hadn’t realised he found me through the website after he had been diagnosed. Strange … I had forgotten how we met! However, as I have memory loss I can put it down to that. It seems most SPSers have memory loss. It’s not the medication, as people use many different medications/treatments, so it can only be SPS which causes it (in my opinion). By the end of the evening all at Tony’s party gave almost £200 to the charity, although I would give a £million to have him back. 51 is too young to die.
I went to the House of Commons on the 27th for Rare Disease Day (Scotland and Wales stuck to the 28th). I think they had the room at Westminster pre-booked for Brexit talks. There were a few MPs and more NHS staff and pharmaceutical companies there. I gave out charity cards which had the following questions stapled to them: 1) Why are so few neurologists aware of Stiff Person Syndrome?; 2) Stem Cell Treatment (SCT); 3) Cannabis (CBD oil legally for many conditions), is a must for some sufferers; 4) Subcutaneous Immunoglobulin (SCIg) as opposed to Intravenous Immunoglobulin (IVIg), saving money for the NHS. At Rare Disease Day it’s a case of listening, then networking.
It was a bit of a bugger trying to get back to Kings Cross to go home as almost all the buses were taking diverted routes. I asked two guys for help, one was 6’4”, so I told him it would be great if he was my boyfriend. When he asked why I told him to lift up his arm, and of course I could easily fit underneath if it was raining! We walked with his arm over me while his friend looked for the correct bus. That one didn’t come, so I asked two girls, of course they were French. Fortunately, I speak passable French, but again no bus! Then I met a boy from Sweden and I told him we watch a lot of subtitled Nordic TV series. Takk is used to say thanks, and he was teaching me a few other words, but as soon as we parted I had forgotten them! I ended up in a taxi and only just made it to the station. Of course, the train was late, but David picked me up, and home by 10.30pm.
March 2019
March is birthday month, not just mine, but more in March than any month. So I had a number of meals out (I really don’t like cooking, she said at 5pm!). I had a thyroid test which was OK. I only wanted it checking as I have put on weight, 8st 4.
David and I went to Hull’s New Theatre to watch Anton and Erin, which will mean nothing to those who are not the BBC’s Strictly Come Dancing fans. It was fabulous!
I had a call from Dr Rick Thompson, who was one of my mentors last year, and had to tell him I couldn’t take part in the workshop for ‘public speaking’. Despite knowing most of the people going, I really didn’t think I could it (strange, as I do nothing but talk).
It seems as though I may lose my personal assistant/carer/helper as my care package contribution costs us £9.50 every 4 weeks, but is going up to nearly £250. She knows the score, so has taken two weeks’ holiday, beginning first of April. It will show if I still need/can afford her.
Two emails to write to people I met at Rare Disease Day. Oh lucky me, not! So despite it being 4pm on a Sunday, I will do them now.
As David’s back is so bad I am going to Rome with Claire. Dates to be arranged, but one of our sufferers lives on the outskirts, so it will be great to meet him.
I have been facetiming with Chandu today. We gave him the link to buy an electric wheelchair and sent a bank transfer for the cost. He will be ordering it very soon. So if anyone wants one, there is the one I bought second-hand for Chandu but the transport costs were prohibitive.
A bit more good news is that since we began the World Map of SPS sufferers there are over 200 people on it. That my friends, is the end of March.
April 2019
Well at the ripe old age of 67 I have got another tattoo. They represent two songs and shaped as an L. They are on the inside of my left calf. I have a high pain threshold, but the startle response could have taken time off whilst having it done.
We have managed to sell one of the guitar amplifiers, which was in the loft doing not a lot. Well sold David. Can I have the money? No? Oh well, never mind.
While Nicky has been on holiday David bought me a new Dyson vac. No leads, and it’s so light to carry (I knew I would get the money from the sale of the amp). For David’s birthday five of us had a meal at our local favourite restaurant, Figaro’s. The waiter who is usually there must have had the night off. He’s so funny as he tells me he has the police on speed dial when I’m there. Really don’t know why!
The following evening we had a meal out with our friends Vanessa and Ray. Wow, two nights when I didn’t have to cook. The following day I attended an appointment at the diabetic clinic, only to find I had gone on the wrong day. So why was it written on my calendar? The following day I took part in a webinar hosted by FreeStyle Libra. I only put two questions forward and neither was answered. In fact, the appointment I went to was to hopefully get them on prescription. Fingers crossed…
I went to see Mathew Bourne’s Swan Lake with Tanja, Tony’s widow. I knew it would be different to other ballets, but by the end there was no swan! In other words it was left to one’s imagination. However, it was very good.
Missed a webinar (in fact, I forgot it was on...). My step mum and her husband took me to visit sister Claire. As all the beds were taken I had to sleep on the sofa. Claire’s partner Gary goes to work early, but he managed not to wake me as he passed by my ‘bed’. Only one hypo during our visit! As Claire wants to keep everyone happy, she has taken us out every day. That’s probably why I was shattered when I arrived home! (5 day stay). Unfortunately, I missed a webinar I really wanted to take part in. I managed to get around with my stick, and the occasional arm, but all in all taking an extra diazepam daily I did OK.
May 2019
I have spent so long going through the list of members on the closed FB page to find out who the sufferers are. Some join for a family member or friend. So as the members are around the world my ‘phone ‘bings’ day and night. I also have a spread sheet with names etc of UK and Ireland SPSers in case there are any clinical trials. I could do the patient history and the neurologist can do the hard bit.
Well, my carer Nicky and I went to a supermarket for a £4 purchase, but it in fact cost a lot more! I thought my squash bottle top was closed, but no! When I arrived home both my Omnipod meter and iPhone were both wet. My ‘phone after a while worked, however it didn’t the following day. Long story short (not my usual) the following day David bought me a new Omnipod and going tomorrow (22nd) to see Heather, my diabetes specialist nurse to get all the settings re-installed. The iPhone is a different matter. Had to buy a new iphone 6SE. The cost for the top I bought in fact cost us £375!
We had a committee meeting, complete with a new secretary. I spoke to our chairman to tell him as such a small charity we didn’t really need a chairman, so he simply left! We had a pre 80th birthday for my step mum, Joyce, at Bettys exclusive cafe in York. We had booked the Belmont suit with a pianist. A rather expensive afternoon tea as it cost us £50 each. Quite an expensive month one way or another. Anyway, at the end of the month we went to see Heather re the Freestyle Libra. About 20 people were there. Heather quietly slipped an extra two in my bag (thanks Heather). I may have said this before, but I hate being diabetic.
June 2019
Well, my care package has ended and Nicky has gone. We had been paying £9.20 every four weeks, but to find it had gone up to almost £250 meant it was a no brainer. We had kept Nicky in the loop since we first found out a while back. So the last day she worked for me was the 24th May. She was off sick on the 27th and despite telling her she had a week’s notice she arrived on Wednesday, had a coffee and left! I have seen her since then, but she knew I had to do it.
We went to Papas (a fish and chip restaurant) with another SPSer and her husband. We all laughed but I should say Shelia and I laughed at one thing while the men laughed at whatever they were talking about. Memory loss!
I forgot my best friend’s (Vanessa) birthday. I remembered the day after, and took her out for afternoon tea at Tickton Grange, a posh hotel. It’s so many years since I was last there. I remember when we were there when we were both members of Beverley Theatre Group. Why we went there I can’t remember except it was a super night. So we had long interesting chats and, of course, afternoon tea which was delicious.
As far as I knew, I had been putting a series about autoimmune conditions on my FB page, only to find via messenger that the source may have scammed me. Will we lose everything, passwords, contacts, money, website? Time will tell. Too shocked to say any more. Well, I am not the only one to have had the original email, and others felt as I did. Anyway, I have unsubscribed and hope that’s the end of it.
Change of subject. I don’t spend 24/7 on SPS. I usually have music playing while I’m on my laptop. So I decided to watch Keith Urban (yum) on my iPad and video with my iPhone. After several attempts I got the two I wanted; Blue Ain’t Your Colour and Break On Me. Have a listen if you can, even for my sake as it took quite a long time.
As Summer began on the 21st, it reminded me that we have lived in the same house since 1985. I always sleep with the blinds open on that night hoping to see the stars and perhaps a full moon. On the 29th my SPS friend Patricia came over from a nearby village and her husband put a garden table I bought together all by himself! Thanks! David and his brother Mike were playing golf (a bit like the day we moved in here). So back they came and neither was hungry! The hottest day of the year, and a new table outside just waiting to be used. Such a shame. We finally ate outside at 9pm, at the same time as I needed to change my insulin pod, and also having a hypo! Another reason to say Oh bugger! I had been doing quite well with my Freestyle Libra.
The following day Chris went home, the guys played golf and I actually cooked without burning anything. As soon ask Mike left peace descended. Two minutes later brother Martin and Sue arrived, having cycled from Hull. Both hot and wanted to sit outside. I put on a coat! (always cold). Forgot to say: I have cut down on diazepam as it causes memory loss, and I have that big time, however until I can find something which is not a benzo I will have to walk with my walker and suffer until I either find an alternative or stick with the consequences of memory loss.
July 2023
Today (9th July) David took me to another appointment to have an ultrasound and chest X-ray. Had all results back - negative. So, when I get back from holidays, I’ll make another appointment with my GP. There must be something wrong as I have lost so much weight. So today (7th of July) I spoke to the doctor who told me all the tests I’ve had done came back negative and she’s making an appointment with a dietitian, so just have to wait to be notified. Why does everyone have to wait so long to hear about referrals? Anyway, I managed to attend a WI meeting; it was OK but nothing special. I sometimes wonder why I bother. A new oven was delivered, which means, in theory, I’ll be cooking again (arrg), though in practice I won’t… My neurologist rang and basically told me I wouldn’t need to see him again unless I wanted to. So that’s that, then. We went to one of my brother’s birthday party. He’s 18 months younger than me and has an inoperable brain tumour. He still has his sense of humour, though, and that’s so important to him. The same day my Omnipod just stopped working, so as soon as we got home David rang the team and I got a new one that evening. Now that’s what I call efficient!
August 2023
I think this month should be dedicated to David. Kidney stones, for the third time, but this time they put in a stent to allow the stones to pass. When it was removed from his private bits it was without general anaesthetic and VERY painful. Then he saw a consultant about his intermittent claudication, which is apparently due to his slipped discs, which means it’s called spinal stenosis. My brother with a brain tumour is undergoing chemotherapy and radio therapy which makes him feel so very sick and it’s full on for four weeks, and then four weeks later he starts all over again. So very sad.
September 2023
Not much has happened this month, but I’ve spent so long going through the members’ list trying to add them as friends, but fb won’t let me. So annoying. My fb page is private as is the SPS group. One good thing is that since I’ve had my new Omnipod it really doesn’t matter what time I eat. It used to give me extra insulin at both breakfast and evening meals. There are so many people with diabetes yet buying anything from the supermarket never shows the right amount of carbohydrates. Eating out is the same, so it’s always just a guesstimate. I saw my local MP then forgot to ask him about it. Grrr. With my memory loss it’s not really surprising. Not sure if I mentioned it but if anyone in the group wants their birthday adding then they can, just message me.
October 2023
At last! The dietitian rang and sent me a booklet to follow. Still eating out most Sundays, quite funny as we went during the week and was told “why tonight? You usually come on a Sunday?” When we went after Celine Dion was diagnosed, I was treated like royalty as several people had seen my interview on our local BBC TV station. Yes, I was able to sell poppies at my local supermarket, it’s amazing how much people gave, especially when I asked passers by what they were going to do with their pumpkins. Most of them bought extra poppies (more money given). I’ll be going again next month and hoping to sell even more. I managed to sell more poppies on the 5th. SPS-wise things aren’t too bad although my fingers and toes twist a bit more than usual. It’s not painful, but frustrating. Between us I wonder why life is so cruel, and why David has stayed with me throughout everything. We just have to help each other. I only have one thing to say to him – thankyou! Chris is in Aberdeen with his girlfriend and her family who don’t speak English. They are all there for her graduation as she got first class honours in molecular medicine.
December 2023
Chris’s birthday can and went without fuss. Later in the month we went to York to meet up with Chris, Romi and her parents. They are wonderful people, but only speak Spanish. We all went for a super meal at one of the local restaurants. David and I came home the next day. A number of family members had a pre Xmas meal at one of the restaurants in Beverley (not very good). Then we met up again and had another meal, not at the same place and it was lovely. Xmas day arrived and we picked up one of Sue’s nephews to take him my borther’s for dinner. Chris did the roasters; I made a Key Lime pie and took a bottle of wine I’d brought back from South Africa. I think there were sixteen of us. Family overload! The meal was (as usual) very good. What a lovely day it was, I was Face Timing a member from the US and I even managed to show her the new fountain close to Martin & Sue. Anyway, it’s always good to get back home again. Boxing day was nice and quiet and as always managed to play Candy Crush and do a jigsaw on my Ipad. I think David’s in the kitchen cooking dinner. Whoop whoop! Then the 30th came (43years of marriage). A certain someone said he would have got less for murder. (Not David). New Year’s Eve was spent watching Joolz Holland and of course the New Year fireworks in London on the TV. So here endeth 2023.
January 2024
There are so many people in the UK group now from around the world. Most of us are in all the groups, but the UK group a) has a website b) has an SPS world map c) a list of genuine neurologists who know about SPS. David does everything on the website, but I just like talking to other sufferers. Today is so cold, but we’ve been to the dentist and done the shopping. I’ve got my tickets to attend the House of Commons next month for RDD to represent SPS, armed with questions. Had a lovely weekend as Jeff, Chris and Rommi came over. Which meant no cooking for me (again). Not much else to say about SPS.
February 2024
I’ve got my ticket to attend the House of Commons for RDD to represent SPS with the following questions: 1) Stiff Person Syndrome is an ultra- rare neurological, autoimmune condition; 2) Can SPS be added to the list of critical illnesses listed by the claims companies (MS & Parkinson’s are included); 3) Most neurologists are not aware of it and this must change; 4) Why do some neurologists continue to misdiagnose this as FND with no proof?; 5) When is the NHS going to provide a clear, concise, professional service for accurate, constant diagnosis and treatment of sufferers of a Rare Disease which is inclusive in all areas of the UK?; 6) Why are neuromuscular arthritis and similar conditions not included on the qualifying criteria for support for energy bill costs? These conditions are exacerbated by cold, often more housebound and even more reliant on their heating and possibly using appliances to control their pain or keep warm, eg, heated blankets. All disability and mobility related benefits should be added to the list of qualifying criteria; 7) We need the medical community to realise that this kind of disregard toward patients is not right, as early diagnosis and early intervention are key to more successful treatments/medication for a better quality of life for a longer period of time in many cases; 8) Of those who responded to my question in our closed fb group “Do you have any blood relatives with SPS?” 48 responded Yes, so, are genetics a part of SPS?; 9) Who pays the unpaid carers? Back home on the 29th. Bruised after the hypo I had outside the House of Commons. There were some lovely bobbies and a paramedic on hand to help. Once they had wrapped me in a silver warming bag, then took me to a café where I had a hot drink and some cake. They also put me next to a radiator. Once I had recovered it was time to go in, however before that I was taken to the House of Lords where I asked what they were there for? Whoops, it may have been better not to have asked…Then to the House of Commons where not much appeared to happening. As usual. Anyway, I managed to give out all the Charity cards and questions to everyone who mattered. To be honest, we all believe our RD is the most important one. A bit like a child’s school play. We only go to see our own children.
March 2024
The first of each month I put a Happy Birthday post on the group Facebook page and David updates the SPS world map on our website. My SPS is getting a bit worse as my fingers and toes have started doing their own thing. It’s so sad to know both our King and Prince William’s wife, Kate, both have cancer. Truly hoping they both fully recover. I saw my diabetes specialist nurse only to find she is retiring in April, so having no idea what she likes, I got her a voucher. She told me she had put my name down for the new Omnipod (hoping I can get it before I go on holiday). So, fingers crossed. Our cleaner has been again, so hopefully now Chris and Romi have gone, life can get back to normal again. However I’m so sorry for our king and his daughter in law. King Charles has waited all his life to become the king and now he has cancer, as has Kate. She’s too young.
April 2024
Strange month. I had a zoom call with a couple of members, only to find that due to the weather it was called off. Attended a webinar, which was an hour of my life I won’t get back. We ate out with one of my brothers and his wife. The following day I came down with a bug and didn’t eat for three days. I felt so weak and wasn’t able to go on Facebook. Apart from holidays it’s been the first time that’s happened. Then Chris’ girlfriend had it, a couple of days later David got it. We heard the door open and in walked Vanessa to take me to see three short plays by Alan Ayckbourn. I had completely forgotten, so with a quick wash and dress, off we went. As everyone knows I am diabetic, but why did my blood sugars keep falling all evening? Apart from that, nothing else of significance has happened. Quite a pants month all in all. Oh! Apart from that, I received a birthday fundraiser from PayPal for £205. Even people from other countries donated, sadly we use the money only for those in the UK & Ireland. How sweet of them to donate, though.
May 2024
Took part in a zoom call on the 4th. It began at 2.30 and didn’t finish until 10.30pm, but while they were having their breaks, I managed to cook a meal and eat it in front of the laptop. Not much happened during May, except I forgot to post my sister’s birthday card. Not to worry as she’s coming up in June, so I’ll give it to her then (note to self – ask Romi to make a cholate cake for her).
June 2024
I was thinking about all the things I used to do before my SPS diagnosis. I used to ride, dive, go to the gun club, local am-dram, junior chamber, painting, pottery, woodwork classes. And they are the ones I remember doing. Now what do I do? On the laptop Monday – Friday talking to other sufferers. I think I really need the weekends off as I’ve been doing this since 1998.So now it’s Saturday and I refuse to go on the SPS group. People will have to wait until Monday. Just had another cheque from Pay Pal for £26.09p Odd amount and I don’t even know who it was from. Almost finished painting the table in the conservatory. Why did I decide to make it chequered? Anyway, it just needs varnishing now. Claire and Gary have just been and eaten some of the chocolate cake, which Romi made them, absolutely yummy (they said). Of course, who can’t have any? Yes, me. I watched Celine Dion on Amazon Prime which was her story, but I was sad that she didn’t say anything about other sufferers. I so wish she could have said something like ‘I’m sending my best wishes to all the other sufferers’
July 2024
So now we’re in July. Where does the time go? This month I was involved in a webinar about SPS barriers which was worth being involved in. Another one about diabetes. Another one with Beacon about ‘Accessible events on a budget’. I’ve even managed to enrol one of our members who, apart from the SPS, has another rare condition. I think that’s all for July.
August 2024
Not much has happened this month apart from the fact we’ve all had sodding covid. Ate out at what is, in my opinion, a needlessly expensive restaurant. One of our members came up with her husband and had lunch out with them – and we all forgot to take any ‘photos. Another zoom call, so that’s all for August.
September 2024
I’ve had bloods taken for just about everything and have to go back on the 18th for the results. David’s brother has come up to play golf – not a brilliant idea as he hurt his back again, Oh! How I wish I was 30. I wouldn’t have any autoimmune conditions. I could stay at that age forever. It’s been like a B&B here, Mike stayed (golfing of course) and watching sport (grrr), Claire stayed for two nights. Chris and Romi stayed, which saves me having to cook. Now I’m almost ready for a holiday to Cancun in Mexico. Going on the 28th. Then home again on the 14th of October. Had a super holiday in Cancun. However, I got cheesed off with everyone speaking to Claire instead of me. Yes, I’m older than she is and disabled (stop grumbling Liz). I managed to give out plenty of charity cards, dived in Cenotes three times, saw the Cirque de Soleil, and the Excorat evening was wonderful. Arrived home to find I had some sort of coughing bug, strangely enough a woman from Washington who had sent me a friend request told me she had the same thing. Now David has it. I spent four hours selling poppies at Tesco and will be doing it again next Tuesday. Considering the cost of living crisis we find ourselves in, people were giving so much. One guy told me he’d collected them for years but had lost one. I gave him a 2024 pin, a few minutes later he came back in to tell me he’d found it in the car and handed back the one I paid for to give him.
October 2024
Having got home from Cancun, the appointments began! The most important was at the Hull marina Holiday Inn to be sorted for the new Omnipod 5 and Freestyle Libra 2 Plus. Hallefreakinleulah!. Still have to change the pod every three days and the Freestyle sensor every two weeks but it’s already making a huge difference controlling my blood sugar levels. And as an added bonus, hardly any finger prick testing needed! I’m selling poppies again today (5th). I really don’t care about much else, lol.
July 2019
First of multiple appointments: with GP to ask several things; with neurologist; with my orthopaedic surgeon as my bunion has been playing up again; and a blood test to find out if I have Hashimotoes thyroiditis. Watch this space for the results! Then there was a webinar with Findacure, which I missed, but listened to the following day.
We went to my brother Simon’s 60th birthday party. It started at 2 pm and I met my old friend Cyril, I had stayed with him in 2014 while in London for the Tower of London poppy display (amazing!).
I enjoyed a day out with the girls: Sis-in-law, Sue, picked me up and then picked up step mum Joyce and met sis-in-law Sarah at a garden centre. Who forgot her credit cards? Who forgot to take any cash? Me? Yep. David thinks having short term memory loss is fun as I can watch a film, then see it’s on again a few days later forgetting I have already seen it. Believe me, it really isn’t any fun at all. If I am cut off mid-sentence then whatever I was going to say just goes. I went to see my sister Claire, as she is moving house with her partner, Gary, to Worthing. It was the hottest time since records began, and she had me working, wrapping pictures, taking stuff over to Worthing. I had intended to meet up with two fellow sufferers, but the trains were putting off both of them off the idea. One lives in West Sussex and the other in London. I even had to check King’s Cross station to check my train had not been cancelled the day I was leaving. Fortunately it hadn’t, so Claire took me to the station, and despite everything going wrong on the network I was only 10 mins late home. I forgot to say the journey down was a different route and I got on the wrong train twice! Not entirely my fault as I was told which track to use, but it wasn’t going to Peterborough. Yet again, somehow, I was still only 10 mins late getting into Brighton.
I had done a jigsaw a while ago, mainly on the floor, and wondered if that was the reason why my left arm and shoulder ached so much.
It was my brother Steve’s birthday, but despite the calls I made with no answer, I thought they must have been on holiday. I’m so lazy, I never send cards (sorry).
August 2019
I had an appointment with a neurologist who had the results of the blood tests I had had three days ago. I don’t have Hashimotos hypo thyroiditis. All my diabetes results were back. It showed my kidney function, although still within normal limits, had changed a bit. I’ll have it done again in a few months just to see what’s what. I went to see the consultant about my bunion, but he only does it by using a general anaesthetic, so I’m not having it done (didn’t like him, anyway…).
My sister and her partner have now moved from Brighton to Worthing. Oh! to be healthy and able to do these things. I saw my doctor again with regard to my left shoulder/arm/hand. She prescribed a higher dose of Naproxen which simply upset my tummy, so stopped taking them. I was told to self-refer to a physiotherapist, which I did. Later in the month, Claire stayed overnight with us as we were going to a not quite family funeral the following day. After the cremation we went to the wake. One of my sister’s-in-law has the same shoulder/neck problem and advised me to see someone privately, but my GP has to make the referral which will be Monday. I’m sick of sleepless nights because of the pain, but only taking ibuprofen which helps a bit.
Brother-in-law Mike came over for a long weekend and, of course, they played golf, which meant I spent the time doing what, I can’t remember! I saw Dr Harley at the Spire hospital, who believed it was a trapped nerve in my neck. We and Vanessa and Ray went to Skidby Mill restaurant for a meal, got back home only to find they had overcharged us, so Vanessa drove back and came back with the cash just as her coffee was ready, lol. Had an MRI and am awaiting results. Had a meal out with my cousin Irene and her husband Barry. Very enjoyable evening. So that’s August ended, but still left arm and fingers hurt.
September 2019
We had our house valued, and it was worth more than we expected, quite a lot more. I would really like to move further south, but of course David wants to stay here. Is there any point in trying to persuade him? I saw my diabetes specialist nurse, Heather, and can now get my Freestyle Libra sensor on prescription from my GP. It’s the same thing as Teresa May has, and avoids having to prick a finger so often.
If anyone remembers me buying an electric wheelchair for my “pretend” son in India, but found the cost of sending it so prohibitive, well we sold it! Took a bit of a hit, but at least it’s gone now. Went to another Findacure workshop about setting up a patient registry. While on the 6am train I was speaking to someone about using the Underground. She told me I could get a step-free trains from St Pancras to Liverpool St. So off I went. When I got off at Liverpool St the guy on the gate asked for my ticket, I told him I didn’t have one. “How did you pay then?” I told him I hadn’t. I think the shock of my admission made him titter a bit and he opened the gate and also gave me directions to where I was going.
I got an email from someone I had met somewhere else offering to teach me about registries. So hope to hear back from him later. Three times this month I have sent my brother David a happy birthday/card/text/fb message. Finally I realised I was looking at the wrong month on my calendar (dipstick Liz again). Anyway, it’s not only me who is a dipstick, as I messaged a local SPS friend if she wanted to meet up for a meal. So I booked for four, but she had her husband drop her off – alone. When I asked where he was, she said she thought it was going to be just the two of us. So having rung him, he had to turn round and meet us there. So again I’m not the only dipstick!
I took part in yet another webinar, but this was about the Freestyle Libra. Had a meal out with Martin and Sue and it was delicious, but not for both mine and David’s backs. I had to ask for a cushion (nothing new there). I am trying to go through my videos to name them. When I got to Tony Barr’s ‘one in a million’ talk, the batteries on my mouse ran out. How strange. Still miss him, obviously not as much as his widow, but it was a very strange coincidence.
October 2019
I was due to give a five minute lightening talk about SPS at a conference organised by Findacure in Manchester. I went the day before and stayed overnight at a Travel Lodge. I got a sandwich, which I ate while crossing the ‘T’s and dotting the ‘I’s for my talk. Went to bed, only to find myself feeling sick, so rushed (yeah, as if…) to the bathroom and fell across the door jamb, bruising my ribs. After vomiting I realised I had lost my bottom denture. So embarrassing! Flushed down the loo! So, with barely any sleep, I got up in pain and saw a guy coming out of his room. Thankfully, he was a nurse and could see I was in pain. He made me sit in my wheelchair and took me to reception. He also asked staff to get the paramedics to have a look at me. They arrived and pain relief was given but I refused to go to hospital. It was only a short walk to the conference centre and I was determined not to be beaten by bruised ribs and missing teeth. I told Dr Rick Thompson (Findacure) what had happened and read my talk to him. He said I sounded OK, so in front of pharmaceutical companies, clinicians and other patient groups, I gave my talk. It did go over the five minutes, but I think as Rick knew the circumstances he allowed it.
I had intended to go on another girly day out, but the pain prevented it. Using old dentures, I had my first appointment with the dentist.
Went to Gibraltar with my sister Claire. We had a super time, but I’m sure it would have been a lot cheaper if I had gone through my travel counsellor. We had only taken travel bags, but using a bus to get to the Rock Hotel, which dropped us off at the bottom of a hill, we then used Claire’s mobile app to find the way there. It took forever! I suspect we may have got lost… I think my favourite day was the taxi ride where we could feed the apes. We had intended to go to Africa and Spain, but just enjoyed Gib, warts and all. Just to say: it’s not a great place to go for anyone with a disability. Fortunately, Claire was a massive help, lifting my wheelchair over everything and me clinging on for dear life on walls or anything else I could find.
When we got home, we watched a film called ‘Yesterday’. People of a certain age would enjoy it as much as I did. And then another appointment with the dentist (only one more to go – hopefully). David and I went to a local village concert hall to see a Beatles and Stones tribute bands. Lovely atmosphere, and quite good music (there was someone dancing who was shorter than me!).
David has his eyes on a Jaguar to replace his beloved Subaru Legacy because of his glass back – he needs a more comfortable ride. And my brother Martin can’t wait to make him spend money! Endless one-upmanship with those two.
November 2019
I spent two sessions at Morrisons selling poppies for remembrance day. Saw my diabetes specialist nurse, and among other things she told me about a new pump on the market. I watched the video of it when I got home to find how bloody complicated it was, so I may give that a miss. David and Chris went to see old prog rock band Wishbone Ash, so I had the evening to myself – lovely.
We had another girly day out with sisters-in-law Sue and Sarah. We went to a bird of prey exhibition near Bridlington. Firstly, the birds of prey display happened earlier in the day, and secondly we were the only ones there. After buying food for the animals and feeding them, I couldn’t stop laughing at Sue as she was scared of everything there. We saw marmosets, wallabys, tortoises, pigs, and a parrot which said two things – “hello” and “hi”. Many of the videos we took showed Sue in a bit of a panic. We saw the meerkats and fed them with wiggly things. Then with fruit on a stick, which we held above our heads. Apparently, it’s my turn to chose where we go next time, but that will be next year. Any suggestions would be appreciated.
David has booked us on another cruise for April, can’t remember where to, but it’s 15 days. I took part in another webinar about ‘How diabetes can impact on mental health’. OK, so I have two conditions which can affect my mental health. Oh bugger!. At least that’s a good excuse to do daft things. Saw the dentist again, but they had sent the wrong dentures, so have to go back next month. David, Martin and Chris went to see a Jaguar again and yes, he’s bought it. Must say, I do like so many of the things it does. So here endeth November.
December 2019
To begin December, my friend Vanessa and I went to a garden centre. David was supposed to be going to Vanessa’s hubby Ray for a jamming session, but Ray couldn’t make it. Some of the family met up for a meal and to exchange xmas pressies. Who forgot to take anything apart from Claire’s? Yup, me. Didn’t even take any cards. I can now blame anything I do/don’t do on my memory loss, lol.
We were out shopping in Beverley and I lost my insulin pump. I wasn’t concerned about it until we searched everywhere, even rang the shop where I thought it had been dropped who told me they have some way of alerting all the other shops. How kind, but it’s never shown up. It was also Chris’ birthday and I had to use insulin and a syringe (old tech!). It proved a real struggle: I ended up being fed and watered by David and Chris and finally went to bed at 3am in a right state. Of course, the following morning (using a spare monitor) it was sky high, and I had to inject again. Why does everything happen to me at the weekend? I had a spare monitor, but it wasn’t set. Fortunately, my specialist nurse rang me on the Tuesday and told us to go see her at midday; she set my pump properly (thanks Heather).
Xmas day we had dinner at Martin and Sue’s. We all made contributions; mine was desserts: I made a trifle and a raspberry roulade, neither of which I could eat. End of the month and our 39th wedding anniversary! Chris joined us for a meal. The food at Figaros is so lovely, I even had a glass of white wine, Chris two pints of whatever and poor David had nothing as he was driving, but had a Smirnoff Ice when we got home. New Year’s Eve was a bit of a washout as I fell asleep before midnight. Can’t wait for 2020 + one day. Then hopefully all will be back to normal. No real change with the SPS. Still get very anxious if I’m going anywhere, even if it’s somewhere I want to go. Crossing roads is still a problem, but if there are people around me I just push my wheelchair and go with the flow. If I sit in the wheelchair when alone it’s easier as I don’t think anyone would run over someone in a wheelchair. Hope not!
January 2020
Happy 2020.
Finally got my dentures done – yippee!
One webinar and one workshop attended. Had brother Martin and his wife Sue for dinner, or should I say they came to us (it sounds a bit like cannibalism…). David and I were talking about how my SPS symptoms have changed over the years. I don’t have panic attacks (fingers crossed), but I still find it difficult crossing roads, especially in unfamiliar places. I’m still taking 20mgs of diazepam each day, but may begin upping it to 25mgs as it’s sometimes more difficult to do certain things. Anyway, enough of symptoms etc. But I do realise how important it is for me to keep this diary. As I have memory loss, at least I can look back to see what I’ve done and where I’ve been over the years. I really think everyone with SPS should keep one. They could go on the website, too, so come on guys, get writing! Went to Hull New Theatre with an SPS friend, Tricia, to see the Mousetrap. We met at Willerby and David took us. Tricia’s hubby picked us up and brought us home. I asked if he had had a peaceful time - he told me he had been doing the ironing! Got home to find David watching sport. Of course…
February 2020
David and I went to see ex-Manfred Mann and Blues Band members Paul Jones and Dave Kelly at the East Riding Theatre. At the interval I asked Paul if he would be singing “What Do You Want” and he was adamant he had never heard of it. So after a bit of “yes you have” and “no I haven’t”, I bought their CD and got home to find I was right. He had recorded it with the Blues Band back in the 70s or 80s. There it was on one of my CDs. One up for me, lol. The following evening we went to Vanessa and Ray’s. David and Ray jammed together for a while on Ray’s new Stratocaster, then we ordered a takeaway. David’s fish and chips ended up being just chips. They delivered it which meant, well, no fish!
Went to another night at Hull New Theatre with Tricia to see The King and I. It was so good. I was watching their feet as they were all barefooted. I don’t know how they managed to do the steps so well. We were going to eat at my brother Martin’s home on the Friday evening, but his Arga was playing silly buggars, so Martin got it fixed and we went on the Saturday instead. I always ask myself: why is Sue such a super cook when I don’t even like cooking?
I went to the house of Commons for Rare Disease Day with these statements/questions stapled to the back of a charity card: 1) Stiff Person Syndrome is an ultra-rare condition affecting one in a million worldwide. 2) Being so rare, few neurologists are aware of it. 3) SCIg instead of IVIg would save the already-stretched NHS millions. 4) When will the day come when we have more answers than questions? Then contact me if you can help.
After that I went to visit my sister, Claire, who now lives in Worthing on the south coast. During the visit I met up with Lisa, another SPS-er. It was so good to be in the company of another sufferer as it helps so much. Came home on the March 2nd. I managed to get an earlier train than the one I’d booked, which was a bonus. Whoop, whoop! Home by 6.30pm.
March 2020
I keep all my appointments on a cork board just to the right of my chair; it also has the time difference to people I speak to abroad who have SPS. I had an appointment with my diabetes doctor which I forgot about…
I joined another group called HSCT for SPS Stiff Person Syndrome. Despite the Coronavirus which is escalating every day, we decided to go to a village pub to eat. There was just one family celebrating a birthday, and us. Empty. That’s all that had booked in for the evening.
We had booked a cruise for April which has now been cancelled because of the virus. And brother-in-law, Mike’s 70th birthday party went the same way for same reason. I also had to cancel my appointment with the diabetes doctor and a mammogram later in the month. As the days go by this pandemic is driving everyone crazy. When it’s over I think the charity shops will be inundated with things people have got rid of as cleaning out cupboards draws etc is about all everyone can do. The bin men, who are still working, will have garden rubbish filled to the brims. As I write this (28th) I feel for those I love and care about. If they are healthy, then I hope they stay that way and those who are not I hope they stay safe too. The whole country is on lockdown. Only supermarkets and chemists are open. If anyone is seen driving they could be arrested unless they are shopping or going for medical supplies.
We have been asked to go outside and clap in support of our NHS, which we did gladly. Some were sending up fireworks, a bit naughty as it could have frightened animals. We are so very lucky to live in the UK. Despite that, our PM and Prince Charles both tested positive but they will be in good hands.
Change of subject, I did a birthday fundraiser and raised just under £300. So Facebook now recognises SPS! Research is on-going in Germany and I’ve messaged all in our closed Facebook page to fill it out. If anyone reading this who is not in our group, please join so you can do it too.
April 2020
So, April cometh and no real news apart from this lockdown. Chris is still with us and he and David do the shopping. I’ve finished decorating Chris’ room. Also been painting the fence on the outside, and with that goes the gardening. The bin is full as are multiple bags of garden rubbish. Even the tip is closed, so it stays in bags.
Did you watch Captain Tom? At the age of 100 he, by walking with his walker up and down his drive, has raised £30 million for our NHS. Also a number one single on his birthday. What a man! Anyway, each Thursday night at eight pm everyone stands outside clapping for our NHS and key workers. One Thursday I had just had a shower and went out in my onesie only to find one of the neighbours was in his dressing gown as he’d just come out the shower too.
How long this will go on for? Who (no, not the band named The Who) the WHO, (World Health Organisation) has no idea (well, that took a bit of writing!). Like everyone everywhere all we want is to find a vaccine or cure. Then it will be the new normal as opposed to this ‘new normal’. Forgot to say I’ve had three falls this month, two in the garden and one in the living room which caused some laughter as I tripped over the blanket I’ve been knitting for Chris and fell onto the sofa. No harm done, but it was almost in slow motion.
May 2020
We should have returned from our cruise on the 3rd. On the 4th 5th and 6th I have taken part in webinar’s with Findacure. The first one was ‘identifying fundraising opportunities’. Second was ‘writing a successful fundraising application’ and the third was ‘navigating corporate grants and sponsorship’. I’m writing this on the 27th May. Since I last wrote anything I have painted the inside of the fence in blue, which I then had to paint bits on the outside with the dark brown to cover where the blue had leaked through. Have to say today I cleaned out one of the bins which was a bit of a job. As I’m now only 4’10” I ended up as dirty as the bin was before I cleaned it. I should have got someone to take a ‘photo.
Did some gardening, now shattered as it’s not easy with a walker then remembering what I want is at the other end of the garden! Anyway, it’s got me out of cooking (which I hardly do these days) as we are having micro meals. Forgot to say I’ve bought, from Groupon, a title. I’m now Lady Liz! I rang the people selling these titles and a small piece of land with it to ask if we could put a zebra ribbon in metal to represent SPS, and although it’s not normally allowed she said “Yes”. So any SPS sufferer’s husband who would like to do this please call or pm me. Naturally, I should be addressed as Lady Elizabeth, lol. Almost forgot, my birthday pressy has arrived from my sister, only two months late, but it was a bracelet and when one is bought a tree is planted. Fab!
June 2020
I, like everyone else, despises this new normal. I’m writing this in August and nothing new has happened. I think Boris should have started the lockdown earlier as the UK has one of the highest death rates in Europe.
July 2020
Attended four webinars with Findacure. One day a microphone arrived, so we checked all our credit cards, but found no payment for almost £90 had been taken. Then I had a call from a French company who had sent it just to let me take part in a Zoom meeting about life with SPS. Taken somewhat by surprise, I did it. So wish I had been better prepared. Why is life always about SPS? I may have said this before, but for me I hate being diabetic. OK, rant over.
August 2020
We have taken advantage of the meal deals this month. Monday - Wednesday. At a very small level we are helping the economy. Had my yearly diabetic check-up which seemed to go well. I took part in a Zoom meeting about diabetes. No help to me, but it may be to men. Tried to put it on the closed FB page, but no can do. If only I wasn’t such a technophobe! I’ll have to wait for my tech savvy son to visit and sort out. Another point, I never play my guitar, or follow any of my former interests, of which there are many. However, I will go to Blackpool one day and go on the big dipper, the name of which I have forgotten, but will know it when I see it (Ed note: it’s called The Big One). The last time I rode on it I was terrified. Sitting alone, behind my sister and her then partner, I kept my eyes closed from the moment we got to the top. Finally got off, covered in bruises, as I had held onto anything and everything, but I will beat this demon. That will be another thing to tick off my bucket list. This is the 30th of August. Why has FB changed? Why, why, why? It was easy to use, but now it’s all different. All I can say is Facebook off, Zuckerberg.
September 2020
Well, here we are, still trying to cope with COVID-19. So much now is done via Zoom, although I only take part in Findacure’s sessions. However, I did miss one this month. Since I’ve had a new laptop it seems things are even more difficult to do. Having said that, of course, you all know I’m a technophobe and it could just be me, lol. Sadly, the guy in Germany who set the questions for research has died. I’ve messaged his widow, but had to do it in German as she doesn’t speak English. Someone else has taken over his role, thankfully. Yes! We have been out for meals and I’ve met friends for coffee, but that’s about it for September.
October 2020
We had new blinds fitted everywhere apart from the conservatory. Really like them. I’ve had my eye screening done and mammogram. Used Zoom again for another Findacure webinar. Another three meals out. Super, as I really don’t like cooking. Not much else happened this month.
November 2020
I went to see my diabetes specialist nurse and tried out a new pump. Took a while to work out how to use it, but think I understand it now, so it’s a case of waiting for the new reader. Can’t wait as it will Bluetooth to my pump which is much more efficient. At long last a vaccine for COVID-19 will soon be on the market, so maybe my next birthday will be COVID-19 free, just have to wait and see. I had intended to be at a three day webinar with Findacure, but my head just wasn’t in the right place. Had a call from my neurologist and he wants to start me on Propranolol which is a beta blocker, why? No idea. Missed another Zoom meeting with Rarefest in Cambridge. Nothing to report about SPS but quite worried about some other sufferers, so have spent days face timing them. To end November, I hope as everyone does, for an effective vaccine for COVID-19 as soon as possible,
December 2020
Hallelujah! The UK has got the new vaccine. When will any of us get it? I understand they are giving it to the elderly, NHS workers then by age. The Oxford vaccine for COVID-19 will soon be approved, Yet again, hallelujah! I had a zoom meeting with another SPSer and one of the neurologists involved in SPS research. I asked if I could do the patient history and was told I could, but still waiting for the email for the questions I should ask. As I write today, the 30th, firstly it’s our 40th wedding anniversary and got the best news, the Oxford AstraZeneca vaccine has been approved for COVID-19! So perhaps I, and many others, will not have another birthday in lockdown. Unfortunately on our wedding anniversary – we stayed in. New Year’s Eve - we stayed in. Along with everyone else, hope 2021 is better for all.
January 2021
The PM has put all of England into Lockdown. The schools are closed, only food shops and chemists can remain open. I may get my first jab either February or March. What more has happened this month? Staying indoors, fed up of feeling fed up. Hubby does a weekly shop and has a walk each day. Does it ever stop raining? No. Changed back to my old insulin pump. Just couldn’t get on with the Medtrum pump. Hope to get a new sensor next month which will bluetooth to my phone and alert me when I am high or low. Had to buy new iPhone to accommodate this. Lots more people added to the SPS world map. Face timing, messaging etc. Apparently, my new prescription has arrived which is a beta blocker and will hopefully help with anxiety, especially when going out. Nothing major re SPS.
February2021
Much the same as January. However, I did receive my new sensor, which works. Chris is back again to watch the cricket and he’s cooking dinner. Roast pork, under which he had put onions and apples, roast potatoes, homemade stuffing, Yorkshire puddings (tinned veg!). It was fabulous. Heard today that we will both be getting our COVID-19 jab on Friday20th Feb. Had a zoom call for one of my sisters-in-law, unfortunately there were so many children there it was difficult to even say Happy birthday. Attended Rare Disease Day on-line.
March 2021
Got an early birthday pressy from David, a Minimus electric scooter. Once I found out how to put it together I decided to take a short ride, only to find a screw had snapped, so got in touch with the manufacturers and they picked it up. Much easier to use when the pandemic is over for going to London for RDD and Findacure’s workshops or to visit my sister. It says in the manual that one shouldn’t use a ‘phone while riding it, but I would have to as I could get lost in a ‘phone box. Attended a Findacure workshop (on-line of course). I managed to raise much more for my birthday fundraiser than I did last year. As usual I was Facetiming and messaging daily. Not a boring month as I talked to other sufferers. I see how extremely fortunate I am. Some people are so very ill. Apart from the diabetes, I’m OK. Nothing major SPS wise to say.
April 2021
The Minimus electric scooter has now arrived, now it’s just a case of riding it again.Today, 23rd, we have both had our second jab. Attended a Findacure online event ‘Ensuring inclusive conversations around genetics’. Had a Zoom meeting organised by a sufferer in the US. Seven people involved. The next one will be on the 25th, It’s a good job I was part of it as we were going to discuss medication, and I was the only one taking any notes! Yep me. Hoping even more people will attend the next one which is only for men. Basically, it’s been Facetiming, messaging, adding more to the group etc. as per usual. I think I may be getting a covid bum lol.
May 2021
This month didn’t begin too well as one of my brothers ended up in hospital. His wife thought he was going to die. It was a reaction to either the flu jab or the second covid jab. We were all so worried and set up a WhatsApp group for the family and close friends. I’m writing this in June, and my brother Martin called over to fix the loo in the wet room as it was leaking, and he’s still not back to full health. Had another online workshop with Findacure which was about ‘Patient group experience of using data’. Mmm, don’t really know what I got out of that session. Anyway, at the end of May we had to call the paramedics as David has, for the third time, got a kidney stone. They gave him gas and air then morphine. Took him to the hospital where he had a scan, then moved him to another hospital. Believe it or not he was home again by 10.30pm. And so it goes on! Weirdly, my blood sugars were all within the normal range while he was in hospital. Still very careful of the SPS. No major problems.
June 2021
Went to have a tattoo removed. As I have hypothyroidism it would apparently be more difficult. Had the first attempt which I thought was successful as it was slightly diminished, however later that day there was no improvement, and it cost £70. The next appointment is in July. I set up a Zoom meeting with two sufferers in Italy, one speaks English the other one doesn’t. What a waste of time. Waited for her to join - and nothing!. Ho hum. David managed to pee out his kidney stone! 20th June: I had found breathing in difficult for two evenings, so we rang 111. I was asked to go to our Beverley hospital. Once there all my obs were done, but they said I should go to Hull Royal Infirmary (yuck) just to be sure. The paramedics were so funny, and I even had to write my conditions and medication on their laptop. Anyway, arrived at HRI and had bloods taken, EEG, chest X-ray and breathing study done. I kept checking my blood sugar only to find it kept falling. While I was there I drank a bottle of Lucozade, but it was still dropping, so after asking several members of staff if they could give me something (bearing in mind I had no cash or card with me) they said no! I asked “so if I have a full blown hypo, what will happen?” I was told I would be admitted. Now, my New year resolution, which was no swearing, went out the window. I said: “For fuck's sake get me something sweet.” Nothing appeared until I saw a nurse who gave me a glucose drink. The trade off (joke) was when I got a static shock off her, apparently it happens with her quite often, and we were talking about changing beds where she always gets a static shock, so I told her to simply kick the bed. It always worked when I was nursing, so let’s hope it helps her. After seeing the final doctor who told me they found nothing of concern, apart from a slight kidney problem which is common in diabetes. I was allowed home. I called David to pick me up, but didn’t realise he couldn’t get in because of work being done in the entrance. Eventually he picked me up near a bus stop. Home, eat, bed. I was meant to interviewing people for a carer’s role, but felt really sleepy, so had to make it the following week. I was sent a form to fill out about the care I received at HRI, but the following day I got a form from the NHS which is where I told them what had happened. I will be taking part in an online Findacure workshop next month which is with the NHS, so that may be interesting. Interviewed three women on the Tuesday, one of which really stood out. Unfortunately, I had a call from the council telling me I could only have 10 hours as opposed to the 15 I used to get, and still have to pay the same costs! So the applicants for interview next week may not be very interested. Mike came up on the 22nd to play golf. Anyway I’m so fed up of watching sport I may go ‘away’ next time.
July 2021
After all the commotion about a new carer, we decided it was too much to pay when the idea was to go out and about but with no mileage allowance included we had to let all of them know our decision. However, one of the women who had applied called me to ask if I wanted to go with her to play boules. How sweet of her! So she came over on the Tuesday, but as it was pouring down we stayed in and coffee-d out. A friend came to fix something in the garden. Another visit to the tattoo removal guy. Still no difference! Claire came up and, along with Joyce, we went to a sculpture park near Wakefield. A place I would not recommend for anyone with a disability. I took part in a Findacure event with the NHS: ‘Improvement UK framework’. Well, I couldn’t see how or why they would do anything different. In fact, I would say shame on them.
Of course, the month wouldn’t be complete without a visit from David’s brother, Mike. They played golf, watched sport on tv, going a bit…..argh! No wonder I put a sticker just outside the bedroom he sleeps in saying Git Free Zone. Still spending days FaceTiming and messaging other sufferers. So SPS wise I’m doing OK-ish, but despite that, even with the sensor, my diabetes is up then down just like a, well, you can find the right saying...
August 2021.
So SPS-wise I’m doing OK-ish, but despite that, even with the sensor, my diabetes is up, then down just like a, well, you can find the right saying. You’ll never believe this, but a new sufferer I’ve just added sells makeup via a US company, so I ordered some tattoo removal cream, but when it arrived I found it was too light. However, she’s going to send me a darker shade. I also got some lip stuff which enlarges lips! I really need that as mine seem to be getting smaller as the months pass by. As the PM has opened up England we, with Martin and Sue, went to Warwick and Stratford. Warwick castle is superb. Speaking of Stratford, remind me again why I was the only person in the class who felt sorry for Shylock? Took so many pics and videos, none of which I can download to my laptop grrrrr, why am I such a technophobe? Then, of course, David does it just like that! We got back on the Tuesday evening and ate at our favourite restaurant in Beverley. I was so tired and told David I would divorce him if we went away again without my Minimums electric scooter. Martin and Sue went to one of the Canary Islands three days later. As women of a certain age, I decided to join the WI (Women’s Institute). So pleased they don’t make jam and cakes these days. The first meeting was at a local hotel, alas nobody was there. One of the staff members told me it had been cancelled, so back home on my mobility scooter only to discover that the group had met and already gone on a walking tour of Beverley. Ho hum, there's always next time...
September 2021
My stepmother, Joyce, is coming each week to help me with cleaning. It was meant to be kept secret, but, of course, my sister found out and was furious with me. Anyway, we kind of calmed the situation down. However, she’s coming over later in the month, so we will see what she says. Today (15th) I spent an hour on a webinar about vaccines for covid. Well, there’s an hour of my life I’ve wasted. So along came my sister... We spent three days going to a garden centre, museums, art galleries, Hull’s old town and to North Yorkshire to see our brother’s new house. By the time she left on the 20th I was so shattered. Is it that I’m getting old or that she a) has no health problems b) is 12 years younger than me? I think it’s both. 21st: going out with Martin and Sue to a restaurant which was very good. The next WI meeting arrived. David drove me there. Quite interesting. They had a quiz, all the answers had to begin with a W or I. Can’t believe I answered 15 of the 20 alone. Anyway, lots of other things happened and we will be meeting again next month. David’s brother was meant to be coming over, but couldn’t because of the petrol problems. Strange, as our local garage had plenty. Had a super night with an SPS friend when we went to Hull New Theatre to see Rob Brydon. Naturally naughty me did some videoing, say no more! Chris has come over for a few days after having his second covid jab, I’d been Facetiming a sufferer who’s son had had two jabs of the Pfizer vaccine, but is in hospital with covid. He has no underlying health issues. I still don’t know why I’m as well as I am with the SPS. OK, no two people are the same but!
October 2021
Not much has happened this month. I missed two Webinars, one with Findacure and the other with the Cambridge Rare Disease Summit, both missed as I was face-timing other sufferers. Chris took us to see Status Quo. Only the drummer from the original line up was amongst them, but what a night or retro rocking!
Too cold for any gardening, too fed up to do much of anything. Went to the WI meeting at the Lairgate hotel, which was about scarf folding which was actually quite interesting. The only thing that spoilt the evening was when I went what I believed was outdoors to use my E-cig. Turns out I was wrong and was told (rather nastily) that I was still inside. She told me where to go to use it and off I went. Long story coming (sorry). I stood outside and saw the sign which said no smoking and another which said ‘don’t close the door or you can’t get back in’. So I was outside, but left my walker propping the door open. Then SHE came back to tell me off again! Nothing she said made any sense to me, so I went inside and was chatting to three friends. Can you believe what SHE then said? ‘You will all be thrown out if you discuss this again!’ One of the women told her she shouldn’t be interrupting our conversation and it carried on from there. We four decided we would not be going there again but meet up for a meal somewhere else. A very boring story, but I’m still fuming about it.
November 2021
Had my diabetic check-up and saw the lovely Heather. She fiddled about with my Omnipod to give me more insulin for evening meals. So far so good. I went to a relative’s home for a 70th birthday party. Meeting family members one hasn’t heard from in years is lovely. We all had a super time. It was held at (yet another) Sue’s home. Chatting to everyone, and each one was as lovely as the others. Before leaving, I spoke to Rob who is one of Sue’s children, well adult child. I told him about the problems I was having getting ‘photos from my ‘phone onto the laptop. Two days later he came over and fixed it. Sadly a few days later I saw it on the local news that there had been a road traffic crash. Rob’s wife had been killed. So terribly sad. I will leave it there or I will be in tears again.
I took part in an online webinar about stopping cruelty to circus animals. We had a Pre-Xmas party here and everyone brought food (great, as you all know I don’t like cooking). Of course, it was Claire’s idea. The following morning Claire, Joyce and I set off to Worthing. Super - I sat in the back with my MP3 player all the way. The following day we had dinner with Claire’s eldest, Emily. She lives in Brighton. The meal was lovely, as were her two children. In the evening we went to Wakehurst Place to see the Glo wild exhibition. That was truly exceptional. Apparently, it has the tallest Xmas tree in the country. The following day we all went to Portsmouth to see Claire’s son, Willum. We ate at a Café Rouge, but which dipstick left her Omnipod on the bench next to where we were sitting? It was about 9pm when I decided to do a blood test, and after searching everything twice, we just couldn’t find it. Claire rang them and they told her they close at 9pm. So off we drove back to Portsmouth, but the sat nav took us to the ferry crossing, so Claire rang the restaurant again and the guy told her to stay on the ‘phone and he would direct her. At last I had my Omnipod back again. All because that guy stayed until we arrived. How very kind of him.
December 2021
We had booked our tickets to come home and Claire drove us to a station to get the train to St Pancras, then we somehow found our way to Kings Cross. Once at the train, one of the guards saw I had a wheelchair and put us on first class as the coach we should have been on didn’t have any working toilets. We were treated to two coffees, a sandwich, biscuits and crisps. Result! Joyce’s husband picked us up and drove us both home.
Missed the webinar on the Monday. Chris had his 30th birthday bash at the Adelphi Club. A brilliant night was had by all. Martin and Sue went too. Chris and I had a dance and he held my hands so I wouldn’t fall. I’ve said this before, but with his Asperger’s he doesn’t like to be touched, so thanks sweetheart. Strangely, David had history with the main band we had booked singer’s Dad. He was in a band which David had reviewed in the ‘80s. Missed yet another webinar with Findacure. On Xmas Day we went to Martin and Sue for dinner. Chris made the mmm roasters, I made a trifle and another dessert. It’s always difficult to guesstimate the carb value of everything so I was swinging between hypo and hyper most of the afternoon. We left about 5.30.
For our anniversary David bought me a miniature of Rodin’s bronze sculpture of the Thinker, how appropriate! Naturally, I forgot. He booked a table at one our favourite restaurants which was lovely. At New Year’s Eve we watched the London fireworks and went to bed.
January 2022
Happy 2022 to all! For the first time ever I’ve had a pneumonia jab. And I’ve decided to try to clear my head and hopefully write more succinctly. Started the New Year with a big barny with David, of course it was mainly about my inability to use anything technical. In my next life I will be brilliant at it (IT), I thought that was funny… However, as usual, my diabetes control is out of sync. Sometimes ok, other times absolute pants. Oh! How I wish a cure could be found. I was sent a kidney function test which involved using my mobile ‘phone, so that was never going to work. I was meant to go today (24th) and completely forgot, so I have another appointment on the 31st. Must remember to do the first pee of the day into the pot they’ve sent. So that’s done and lots of blood tests to boot. If it shows a problem with my kidneys, they would have my full permission to do both a kidney and pancreas transplant. No real problems SPS-wise and I still wonder why I’m so lucky. So, cheerio January, hello February!
February 2022
Had a girly day out (girly! the youngest is almost 60 lol). We went to the outlet near York. As the only one with a wheelchair, I was used to carry everyone’s shopping. Lunchtime arrived and everyone was tucking into jacket potatoes etc, all I had was a cuppa. Bear in mind I hadn’t eaten breakfast, only to find on arrival home my monitor read high. When that happens it won’t give me any insulin, so I used a syringe and injected 20 units of insulin. Oh, silly me. Long story short, because of my ‘phone screeching three times (to indicate a low blood sugar) I got up at 5am and slept on the sofa, after having fed myself a small army’s daily food intake. SPS-wise, nothing new to report, except a neurologist in the UK is now doing research. Although he said he would ring me, as yet he hasn’t.
March 2022
Had a lovely meal out with friends, and then back to their house where we all played or sang different kinds of music. Had a great 70th birthday party at the local golf club, I had my drinks out of a mug from a charity shop on which it said 70-ish and lots of funny writing both on the out and inside. Had to make two trips, first to take people to their hotel and then to get my pressies. We managed to get a siblings picture, but nobody took any ‘photos of the party, not even me! I got a bit of video of the magician, rich Reynolds, who was very good. Well, I don't think very much else happened in March.
April 2022
April Fool’s day, 1st of April, and who's husband had a TIA - a small stroke? He didn't feel very well and when I asked him to smile it was lopsided and his speech was slurred. I called for an ambulance straight away gave him two aspirin and then they blue-lighted him to hospital. He came home the following day with so much medication which he will be on for the rest of his life, and he can’t drive for four weeks. What more can I say? We went to the Tomahawk steak restaurant for his birthday with friends who took us and Chris, which was very enjoyable. Nothing of any real interest has happened with me.
May 2022
Attended a webinar with Beacon, formerly known as Findacure. It was about ‘When it’s your time to go’. What can I say, as nobody seemed to realise how long I’ve been doing this - 25 years flying solo. Yes, it would be great to have others from the UK onboard, but…
We went to my brother-in-law’s birthday party and I danced with so many people, all of who kept hold of me, thankfully.
On the 15th, my sister and her partner drove us to Heathrow for my birthday pressie from David. Off we went to South Africa! Firstly, to Cape Town. We stayed at the President Hotel. It was their Autumn but the weather was lovely. The first two nights we ate at the hotel, but the third evening we decided to eat out. The concierge was very helpful and knew just where to go, so he pushed me in the wheelchair to a beautiful restaurant, where we had fillet steaks mmm... The owner ordered us a taxi to take us back, which took about 3 minutes (apparently women should never walk alone after dark in the city, even in the “safe” areas). I had to laugh as I think would-be villains would have left me alone as I could easily have bored them into submission. Shariff, our guide took us up Table Mountain which is quite amazing. As I had a wheelchair and I hadn't realised that Claire was afraid of heights, Sharrif took us all over Table Mountain. Unfortunately, or fortunately depending on your point of view, it didn't have the tablecloth. Sharif took us to a lovely coffee shop called the Truth Café. We went to the Cape of Good Hope and saw lots of penguins; saw some botanical gardens and some albino squirrels. We left Cape Town on a flight to Port Elizabeth from where we were taken to the Pumba safari park (or is it game reserve?).
We did two safaris each day and our driver was named Phillip. On each journey we were given a waterproof jacket and a hot water bottle, which was like heaven. We saw so many animals: elephants, of course, lions, even a white lion, giraffes, lots of antelope but on the last day there was just the two of us and we looked at the flora. We were asked to taste a plant then he drove a little further and asked us to taste another plant which was the same plant as the first one but it tasted differently. Apparently, that's because plant roots “talk” to each other saying “watch out, I've just been eaten so be careful to change your flavour” or you’ll be eaten too.
We stayed in the most wonderful chalet and just outside there were hippopotami with an island and a massive pond. Every morning we woke up and it seemed like the hippos we're just outside our lodge. What a wonderful time we had! The journey home was overnight back to Heathrow and Claire, despite not having slept, drove me to her home where we stayed the night and then she drove me 250 miles home. It was her birthday while we were away. I told the staff they made her a birthday cake - I've never seen her blush before!
So on the 25th of may I arrived back home. I had tried to buy something for David and Chris at the airport but I needed my boarding pass which Claire had, meaning I couldn't buy anything, but I did take David out for a meal the following weekend. I kept a diary of what happened each day, but it doesn’t seem to be working when trying to put it on here. Memory loss Liz strikes again!
I'm having problems with my nails; they just won't grow so I've had loads of blood taken but all the tests came back negative, so I’m going to see my GP in July.
I’m so proud of Chris as he’s gone via train to Paris, Spain and Gibralter. Visiting loads of different places on the way. Of course, the train strikes have messed things up on his return trip, but he managed to get to Doncaster where David picked him up.
June 2022.
David’s had a heart monitor on for a week following his mini stroke. Awaiting the results. Went to the WI, where the woman speaking had been on TV’s the Sewing Bee. Absolutely fascinating. Later in the month we went to a cousin’s 70th surprise birthday party. We all chatted about what we used to do as children, although I’d better not say what we did, lol. On the 28th I, along with an old school friend, visited where we lived and the school we went to. It was truly horrific.
July 2022
We went to one of my family’s homes to celebrate two birthdays, delayed because of covid. I saw my GP about the nail problems and was told it had been caused by diabetes! I’m seeing my specialist nurse next month and will hopefully get some answers then.
I went to London to a Beacon meeting where the topic was ‘The key to a successful rare disease patient group’. It was very interesting and nice to see familiar faces after such a long time. I went on the train with my mini mobility scooter. Every train and bus in London were fabulous about it and I never even had to show my disabled card. On the 17th we went with friends to see a Beatles tribute band and later in the week went with them to a quiz night. The following night I went to another WI meeting. What I’m itching to tell you about was today, the 23rd. I wanted to go into town, so waited for the mini bus to take me. I had my fold up mobility scooter which they didn’t object to. Coming home was a different matter. I caught the bus, but the driver wasn’t sure if I could take it on. He rang the East Yorkshire Motor Services and I was ‘allowed’ to use it on that occasion, but was told if they had an accident I would not be insured. There were only four women on the bus, so I wasn’t causing any obstructions. Having arrived home I rang the company and was told exactly the same thing as the driver told me. I then emailed the MP for the disabled. Still waiting to hear back! Disgusting discrimination.
August 2022
Went to the Beverley community hospital for my diabetic check-up. I didn’t see Heather (my specialist nurse) but saw my diabetes doctor, Dr Allen, who I’ve never met before. She changed the settings on my Omnipod. My HBA1c was ok at 64. Kidney function ok-ish. However, I completely forgot to ask her about my fingernails. My toes seem to be playing up at times as they twist. If I stand and move about a bit it usually helps. During the night I found my calves were either in spasm or it may have been cramp.
Went to another WI meeting and there was a ‘dancing dog.’ The owner had been on TV, but didn’t win. Later in the month we went with our friends to another quiz night and came last!
September 2022
What a month! David’s brother had come over to play golf – no surprise there. When he had a shower, water was coming through the living room ceiling (been here before, I thought); after that we found none of us could have a shower grrr. One of our nephews came and cut a hole in the ceiling and ‘fixed’ two pipes together so we could have the shower back on again. He had to come back to finish the job, then Jan came over to plaster the ceiling, which can’t be painted for quite a while. TBH I’m not sure I can do it. Anyway, because of the memory loss I’m now taking 10mgs when I get up and 7.5 at midday. Up to now I’m ok. On the 8th our Queen died. A sad day for all royalists. Just after she’d sworn in Liz Truss as our new PM, which couldn’t have been easy for her as she doesn’t like royalty and was a remainer when we left the EU. Now we have King Charles III and his wife Camilla as the Queen consort. We both had our Autumn covid booster on the 25th, which was Moderna. David has had a headache and a sore arm for a couple of days, but I’m doing ok.
October 2022
My sister Claire came over and drove me back to her home in Worthing before taking me to Jersey on holiday. I just wanted to see the (Durrell) zoo, but we went almost everywhere. I believe there are nice people and not so nice people everywhere, but I can say everyone I met there was so very sweet. It’s definitely very disabled friendly. TBH I wouldn’t want to live there, but it would be a close choice. Arrived home with lovely memories. Back to reality. For the rare disease day in the UK & Ireland group I asked "Are you GAD positive or negative and do you have any blood relatives with SPS?" The results were incredible, and we gained a new member. She’s from the US, as are most of our members. I attended the WI meeting. Nothing too interesting happened. So apart from the diabetes, I’m ok.
November 2022
Attended an online workshop with Beacon (formally known as Findacure). Idiot me, took me to about half an hour to join the workshop. Technology... It was about ‘Being overwhelmed as a rare leader’. It makes me so very sad that so many SPS sufferers are so very ill. I don’t think I’ve ever said that before, but it’s true. It was the same day that we went to a cremation. Sad times. Had a Zoom meeting with two doctors in the US and was so very grateful to have Rick, also a doctor, from Beacon with me. Attended two webinars with Beacon, missed the third one as I was FaceTimming another sufferer. Ate out just twice this month. Went to see two tribute bands, Abba and the Australian Pink Floyd. Floyd, in particular, were excellent - you'd hardly know it wasn't the real deal. Went to another WI meeting, which are always so good. Starting to make friends there now. Meeting at the Crafty Café is proving useful, again through the WI. Making things for the xmass tree (I keep saving chocolate to put in one of the items to give to our nephew Jack, as he has autism.
December 2022
This month has been so busy, not least because of the shock announcement that Celine Dion has SPS. I missed a workshop (too busy), managed to attend another online one, though. Went to WI Christmas party, lot of fun playing silly games and making more new friends. Went to see another tribute band, this time Frankie Valli. The singer wanted to dance with me but it wasn't possible. However, he did tell me he was from Manchester and had had a small part in my favourite soap, Coronation Street. We took delivery of two new sofas, fortunately the Salvation Army took away the old and rather tired ones. At least they'd done good service for 16 years or so! Had a pre-Christmas party at home for the family, and everyone brought food or booze, which meant I didn’t really have to cook.
Since Celine Dion’s diagnosis, not only me, but so many of us have been on the radio or written for newspapers and magazines, all helping to spread the word.
We had Christmas dinner at Martin & Sue’s, 13 of us in all. Lovely.... Then five days later we celebrated (quietly) our 42nd wedding anniversary. David’s pressy was adopting an elephant which (he) will be paying each month. It came with a soft toy elephant and three ceramic ones which hang by each trunk. Lot’s of lovely things. Now I can’t wait for 2023.
January 2023
Happy 2023 to all. I had a zoom meeting with the Genetic Alliance. On the 24th I was interviewed by our local TV station, which is now on YouTube as is the one Tracey did on Steph’s Packed Lunch daytime TV programme on Channel 4. I went to Leeds with Tracy for support.
I had my first-ever flu jab, which went well enough, In fact, I only had a sore arm for a few days. Then another zoom meeting with the Genetic Alliance and told them there are 46 people who have blood relatives who also have SPS. To that their ears pricked up, however I appear to be on the waiting list to attend their Rare Disease Day at the House of Commons and I’m a bit/lot crossed about that.
I saw my GP as I have oedema in both legs and a persistent cough. My appointment with the practice nurse for the respiratory clinic went ahead on the 27th. I now have COPD and asthma, for which I’ve been given a spray called Trimbow, which I have to use twice a day. So I now have five autoimmune conditions. Who would have thought I was perfectly well until I became thirty?
February 2023
I can’t believe it - February already!. It’s been quite a busy month. I was on the waiting list for RDD at the House of Commons, but instead spent the evening with Beacon. I only asked one question, which wasn’t answered. I can’t believe I’ve been doing this since 1998.
March 2023
Chris has been so kind, he’s cooked meals for both of us for five days and is coming again next week to cook again. Firstly, as he knows, I don’t like cooking and secondly he wants me to put on more weight because I have lost a lot and don’t know why.
Today, David and I went shopping (3rd) When we got home he was shattered. His back was hurting so much. OK I’m the disabled one, but if only I could find someone somewhere who could treat his slipped discs, I would pay however much it may cost. I don’t think that will happen though.
I wanted to write to our new King to congratulate him, but do I ever get the time – no. I can’t believe just how many people have sent birthday wishes, even from people in other SPS groups who I don’t even know. Wow.
Another entertaining night at the Women’s Institute, they were talking about recycling (which I always do anyway). Just meeting and making new friends is wonderful. I found it quite funny as one member pulled up a seat for me (knowing my condition) but someone else took it. David, as ever, continues to support me as so many sufferers are now on the SPS world map. Goodness knows why he stays with me, but he does.
I attended yet another webinar about technology. My birthday fundraiser didn’t make as much as last year, but never mind. Thankfully, my cleaner told me about a hairdresser who has cut my hair and only charged £12. Can’t wait to see her again to colour it ready for my next holiday to Germany in June. Hoping to meet up with three other sufferers there, although I haven’t told Claire yet, lol.
April 2023
Gosh, April already. What’s happened this month? Nothing other than SPS stuff. And a lot going on in the house, which I won’t bore you with. Forgot to say it was David’s birthday and he went out with a friend that night – yes, that’s moi.
May 2023
This month, the charity received a cheque for £1,000 and for reasons I can’t explain, I’m terrified to ring the donor, but I will. Her husband was only diagnosed in 2019 and has since died. I have now called her and it was not as scary as I thought it would be. It’s always so very sad to hear of the loss of anyone, but apparently pneumonia and covid 19 were on his death certificate. Is it a blessing to lose one’s life when they have SPS? I can’t answer that.
On to other SPS things: I’ve spent a number of days helping another sufferer fill out her new PIP form. Truly awful to do. Why are they so difficult? We’ve had our music fix this month at one of the coldest venues ever. Having said that it was a Free tribute act and they were so good. Because of weight loss, I’ve seen a GP who wanted a urine sample, which I was able to do the same day. Next is a poo test which I’ll be taking in June when I’ll be having blood tests done.
June 2023
On to better things. I and my sister spent a week in Berlin. Every day was special. We stayed at the Crown Plaza hotel. We went on a walking tour and saw many things we had wanted to see. Then we saw a show called Arise – spectacular, to say the least. Then we ate at the TV tower. I got very upset when the staff asked if I could walk unaided. “No, I’m disabled” I said, but in fact they only meant could I use the steps (which had a handrail). To which I replied yes. Then we went on a riverboat cruise and ate some wonderful food. In fact, there were a number of people from the US on the next table, so naturally I passed them some charity cards. On the last day we went to the zoo. So, pretty much a perfect holiday. Came home on the 4th of July