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.

June2006

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!

 

Stiff Person Syndrome.

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.

Donations

We always welome donations, no matter how large or small. You can donate on-line or via a donations form.

To donate by secure credit card transaction, please use the button below. The full value of your donation (less credit card fees) comes to the charity.

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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.