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.
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.
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?
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.
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.
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 Ј10”. 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 Ј10 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 Ј3! A little on the stingy side, but Ј3 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.
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!).
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.
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…
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.
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”.
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.
This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may be of interest to caregivers, care professionals and researchers, together with advocates for the condition and the general public.
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The group and charity was set up by Liz Blows with the following aims:
(1) The relief of sickness and the protection and preservation of the health of persons affected by Stiff Person Syndrome, together with their families and carers.
(2) On-going education and awareness-raising within the medical profession and the general public of Stiff Person Syndrome.
(3) The promotion of research into the causes, effects, treatment and management of Stiff Person Syndrome.
"Stiff Man Syndrome" (SMS) was the name assigned to the condition when first identified in the 1950s by Moersch and Woltman in the USA. In recent years, in the modern world of PC, the condition has become more widely known as "Stiff Person Syndrome" (SPS). SPS does not differentiate between sex, colour, or creed, although UK evidence tends to suggest women are most at risk.
SPS is an auto-immune neurological condition. It is unique due to its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable. However, many neurologists and GPs are still unaware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression.