January 2011

Happy New Year to one and all! Not much of note to tell you about this month, apart from the incident at the supermarket. I use my wheelchair as it is faster than pushing a trolley. I was with my PA and when we finished the shopping I propelled myself back to the car. When I got out of the chair and began to fold it up, it sort of fell sideways.

I saw a nut on the back seat of the car, which obviously belonged to the wheelchair, and I attempted to fix it. My anxiety levels rose, and by the time I had driven the three minute journey home, I needed help getting out of the car and into the house.

I was too anxious to push the chair, as in my head it would collapse and I would end up falling. Having got inside and while sitting on a dining chair, David put the nut back on and all was well with the chair - but not with me. I was anxious and quite rigid for the next few hours. It’s so infuriating to realise something of no real significance can make such an impact, and there is absolutely nothing I can do about it!

I have seen my diabetic consultant and he suggested I try using an insulin pump as I am still having too many hypos. I have Googled different pumps, hoping to find one which indicates when ones blood sugar is low. Perhaps such a thing does not exist? However, I am sure we will discuss it more when I next see him.

February 2011

I saw my neurologist. I think he was impressed that I walked in pushing my chair. I told him I am self-medicating ie, taking extra diazepam or gabapentin when needed and he was fine with that. I know of others who do the same, but they tend to take extra when they are going out or doing more physical things than usual. I tend to need extra because of anxiety.

If you have got this far, you will remember I attended a meeting at Hull University last October with regard to sitting on a panel to interview candidates doing either a BA or MA in social work. I have been on the panel twice this month and have thoroughly enjoyed it. I am now officially on their books, and look forward to future sessions.

Chris was in a dressage competition this month. He was riding his favourite horse, Kate. Eloise joined us. She is working for the Echo charity and seems to be enjoying it. Chris looked fab, as did Kate. It started well, but after about three minutes Kate decided she would rather gallop than canter. Despite the fact that Chris was retired, he did well to stay on and ride her along the walls to stop her.

Thanks to the frost, we have lost lots of plants, as have a lot of people. Roll on the spring when I can begin to replace some of them.

March 2011

We took Chris to Moreton Morrell at Warwick College, where he is hoping to do a degree in equine science, for an interview. Everything went well and he seemed impressed with the college,

I have been to a gig and the theatre this month, so at least I have had my music fix. As always, my head goes into anxiety mode before leaving home. I have also done another couple of stints at the university.

I went to Bruges with my brother Steve. It was the last of the two-for-one offers which cover the winter months and it was also my birthday. Our first argument began at the end of the by-pass, (about four miles from home). As we always have differing views on things, arguments are abundant. They always end in a stalemate as neither of us will back down, but it’s never a problem as I think we both secretly enjoy it.

The weather was really good, and in between arguments we had a good time. We saw areas we had not seen before, which was lovely. It’s a nice place to cafe hop and people watch. The problem was that I had left both my credit and debit cards at home, and only had a few Euros.

When we got back on the ferry, we watched the entertainment and Steve went to the casino. I took my book and went to the piano bar. About 11.30pm we got chatting to a guy who was kind enough to buy me a cocktail as I only had 30 minutes left of my birthday. There were no SMS incidents to report.

We got home Friday morning and my sister Claire, who had been ‘up north’ took me back with her to Brighton on the Sunday. The pair of shorts I took with me did not come out of the bag. Perhaps I was being a bit optimistic to think we may have a day when it would be warm enough to wear them.

Of the nine days I was there, we went to different places which served scones with jam and clotted cream - yum! We also went to the Isle of White. It was a Sunday and everywhere was closed apart from the area known as the Needles. Eventually we found a pub that was open and serving food. After three courses we were all sated and ready to carry on driving around an almost-deserted island.

Apart from the SMS playing up on an almost daily basis, I had a good time with Claire et al. Oh, I almost forgot - one day Claire asked what I wanted to do. I told her I was going into town - on my own (might as well use my bus pass!). I was feeling okay and made my way to the promenade. I had to sit in my chair to get down the slope, but why I stayed sitting in it, heaven only knows.

As I felt okay. I ended up at the West Pier and had a coffee. I decided I would push my chair back, but no, my back/head decided it didn’t want to obey my thoughts. By hook or by crook I managed to get back to the bus - after almost being run over by numerous cars (but to be honest I didn’t give a damn as my back was in spasm).

Anyway I did manage to get back and Claire met me at the bus stop. Feeling suitably upset/embarrassed and in pain, we both decided the best thing to do was open a bottle of wine and drown our collective sorrows.

After nine days with Claire I got the train home. David had got me some flowers with a note attached. He also cooked our evening meal!!! Good heavens, what has he been up to? Whatever it was, flowers and food equals forgiveness. Lol. Anyway, just as one thinks life has dealt enough blows, Chris has now been diagnosed with Aspergers Syndrome...

April 2011

We had our annual committee meeting. The longest ever: it started at 2pm and didn’t finish until almost 5pm. Two things you may be interested in are: 1) We have decided to go pc, and change the name from Stiff Man Syndrome to Stiff Person Syndrome. My vote was under protest; 2) We have now got committee member’s photos on the site (look on ‘About’). Anyway, there is nothing of note SMS, sorry SPS, to tell you about apart from John McFall joining us as Technical Officer. He’s a bit of a whiz on computers and things and has taken on a major responsibility for getting us into the 21st century, especially with the website and forum. Welcome aboard John!

Still having good and bad days/hours, and still the hypos. The only good thing about having a hypo is that I can eat Galaxy roasted & caramelised hazelnut. I am so into it at the moment that I will leave it there and go and have a little nibble. PS. If anyone wants to send me some, then it’s fine by me.

May 2011

Since it was agreed I could self-medicate, through trial and error I have found gabapentin seems to work more quickly/efficiently than diazepam. I don’t need the extra boost every day, but it’s good to know I have the option.

No doctor or hospital appointments for me this month! In fact, I think my last appointment was in February, which must be pretty nearly a record for me.

A couple of amusing incidents to mention: Chris was in a competition at college and told me the evening before that he needed his light tan deer skin gloves (not leopard skin pill box hat, which will be understood only by a Bob Dylan fan). Of course, the gloves needed washing. No problem with that, but drying them was a different story. After every avenue was explored, I decided to put them in the microwave. Not a clever idea, as when they came out, one was half its original size, rock hard and burnt, resembling something I may well have cooked.

The next incident was when I decided to photograph one of the goldfish in the pond, as it was suffering with white lumps on its side. So, armed with a camera, I knelt down to take the pics, at which point my right foot went into spasm. Fortunately I had the camera strap around my wrist, but as I shot forward, the camera fell into the pond. I was saved from the same fate as the camera by Carol, one of my PAs, who grabbed me just in time. Shaken by this incident, I needed help to get back into the house. I have never had a spasm in my right foot before! Sadly the goldfish was on its way to meet its maker. Thankfully, I am still alive to tell the tail, sorry, tale.

Apart from the inevitable hypos and stiff times, this month has not been too bad.

June 2011

I met up with Linda, an old school friend, at a concert. We said we would stay in touch, and surprisingly we have. We went for a meal and talked endlessly about the things we used to do and the fun we had. How very different to today’s kids.

I was in a very anxious state beforehand. David drove me, and I had to hold on to him and my walker to get inside the restaurant. I had taken an extra gabapentin before I went out, but it didn’t seem to help. I was the first to arrive, and ordered a vodka while trying to appear ‘normal’. My hands were shaking, and I tried to sip it, but really I wanted to gulp it down.

As soon as Linda walked in and sat down my anxiety quite quickly subsided. After a very nice meal we went to the karaoke bar (only about 50 yards away). The usual crowd were in, including my brother Simon. All in all we had a fab night (after the anxiety had gone).

I have wanted to see the Trooping the Colour for a long time, so my sister Claire and I decided to go, and we agreed to meet. I knew which buses to use to get me from the station to the Mall, but had not anticipated what a massive event it is. It seemed as though the buses were going everywhere but the Mall. ’Phone calls from Claire every five minuets didn’t help. Eventually, I got off at Trafalgar Square.

As I was crossing the road, my ’phone rang again. “Where are you?”. “At the crossing”.  And so the conversation went on - until we bumped into each other on a crossing. As we were late, Claire ran while pushing me. As if all that had happened wasn’t bad enough, try sitting in a wheelchair 10 deep behind others. Liz needed a plan!

I saw the police were selling programmes, so I told one of them I would buy the said programme if he could get me to the front. Thank you Mr Policeman! We had a front row view of the Royal family as they went to Horse Guards Parade. With an hour to wait until they came back, we crossed the road and wandered down to Buckingham Palace.  With a bit of gentle nudging, and some help from the BBC cameramen, we managed get snuggled up against the barriers. Yet again we had a birds eye view of all the Royals. Once they were in the Palace grounds, the police formed a row across the road, and let the public walk behind them - starting at the other end of the Mall. Anyway some bright spark lifted my wheelchair over the barriers and then, with help, lifted me over too. Claire climbed over, followed by many others.

We got to the fountain and started chatting to four young guys. As soon as the royals came out on to the balcony, one of the guys lifted me up on to the edge of the fountain - how sweet of him. Everyone sang God Save the Queen, which was a moment to feel proud to be British. So many thousands of people, but to my knowledge there was no trouble (very different from going to a football match, with a few hundred people, and a lot of fighting). 

As usual, we have had a visit from David’s brother, Mike. I feel so sorry for David, as he walks round the course with Mike, but is unable to play. It seems almost every joint in his body hurts. He is seeing a consultant next month, so perhaps we can find out what the problem is.

My anxiety levels were not too bad when I went with my brother Simon to see him perform in a semi-final karaoke competition. Sadly, he didn’t win, although everyone said he was very good.

I have been helping my brother, Martin, with some decorating. When I am having a good day, and there is someone with me, I get up to all sorts of things. Anyway, as you can see I have had a very busy time of it this month - long may it continue.

July 2011

My life is really quite repetitious, as I have spent yet another week with my sister Claire. She came up for a long weekend and took me back with her. As bad as it sounds, the fact there were no kids with us on the journey was good. As parents know, conversation has to be a bit limited, and we have to listen to the ‘wrong type’ of music.

We had our usual fun time together, although she wore me out as we re-potted almost every plant in her yard and spent two days clearing out her garage, which required two trips to the tip.

We did, of course, find time on more than one occasion to go to the garden centre in Ditchling for afternoon tea. Yum, oh! so yum.

Claire had asked if I would house, cat and tortoise sit in August while they were on holiday, as I did last year. The problem I felt was that as Chris had made other plans, I would be on my own. I had various concerns - what if I had a hypo? What if the SMS played up? What if the weather was bad, and perhaps most importantly I would have nobody to talk to?

That last comment reminds me that while I was there and in the local Co-op, I met one of the Beverley Sisters (most of you will be too young to know who I am talking about - it’s a little old for me too. They were three sisters who were popular in the late 50s, early 60s music charts).

As always with me, I forced her into having a chat. She was charming, and she found it quite amusing when I told her I was from Beverley and staying with my sister. Get it? Beverly, sister?

My brother David and his son Josh came up to Brighton the following weekend. Even more laughs, apart from the endless talk of motorbikes - they are both keen bikers. David delivered me home safely, and after a quick cuppa he set off home to North Yorkshire. I just hope he didn’t ache as much as I did. Five hours sitting in a car made my backache.

Some time ago I decided it might be good for members living in close proximity to meet up. The first region I decided upon was Bristol. After three changes on the train via Birmingham, I arrived at Bristol. One of the members picked me up and we all met up for lunch. Everyone had a good time. Surprisingly, I didn’t suffer any anxiety, rigidity or spasms - very odd, as I was meeting people I didn’t really know. Anyway, it was chat, chat and more chat. Everyone exchanged ’phone numbers. Hopefully they will stay in touch.

One of the members offered to put me up for the night, which I was very happy to accept. She took me on a sightseeing tour around the city. Later, we sat in her garden with a bottle of wine. I don’t know if it was the day catching up with me, but I was quite rigid while trying to walk down the garden. Having got there, we talked about her beautiful plants, which cuttings I could take home, and of course diabetes and SMS (the latter being the shortest part of the conversation).

The following morning I took her up a cuppa - only three-quarters full, as I didn’t want drips on the carpet. Of course, she understood why the mug was not full. Later that morning she said how much she had enjoyed having someone stay who was diabetic and had SMS. Apart from being a consultant rheumatologist, she is an artist too. So after a lovely couple of days I took the train home.

My journey was via London. Despite booking as a person with a disability, the ticket required me to use the underground, something I have not done for years. I felt OK, so let’s go for it!  I got into the lift, and was surprised how short a journey it was. Silly me - I hadn’t realised it only took me down one floor. Still feeling ok, but with a bit of trepidation, I looked at the escalator. Only a nanosecond passed before a kind passer-by helped me traverse the aforesaid escalator. Having got to the bottom, I thought I was there. But no, next was a staircase! Again, a moment later, a guy said: ”I’ll take your chair down for you”. He even waited until I got to the bottom. As I keep saying, people really are so nice. I have to admit that with my total lack of direction, I had to keep asking which tube line I needed for King’s Cross.

Having changed tube trains a couple of times because of ‘works’, I missed my connecting train. No problem, I was able to get the next one. I got on, obviously not realising I was on a 1st class carriage! The guard was very sympathetic to the problems I had had and let me stay where I was - nice. How unusual that I hadn’t suffered any anxiety throughout the visit.

I have seen my diabetic consultant this month. Nothing new to report.

August 2011

Not much to say this month. Chris went to the ‘Bloodstock’ heavy metal festival; I am still having too many hypos; and I have been the subject of a case study, re-SMS/SPS. I feel quite sad about using a three letter abbreviation (tla) - or in this case tla x2 to include SPS which is now so widely used. The study was done by one of the group members for part of her MA.

We went to my Goddaughter’s wedding, a very grand affair at Sledmere House. Fortunately, the weather was as wonderful as the wedding. I have put one or two pics on our Facebook page.

September 2011

Does everyone feel empty when their last child flees the nest? Chris has left to start his degree in equine science at Warwick Uni.

I have done my first-ever car-boot sale. I made £106 (just shows what rubbish I have kept over the years).

Brother-in-law Mike and his wife Jane came up for a long weekend. David and Mike did guy stuff, while Jane and I did the girly things. In fact, I think we only met up when getting ready to eat out.

Octoberr 2011

Quite a busy start this month. We had a committee meeting on the 1st. One of the members stayed overnight while on Sunday morning David was working at the Pro’s shop at Beverley golf course (an ad hoc arrangement, which works out well), which meant I had to take the member to the train station.

The only reason I am saying this is because I was going to visit my sister the following day and I hadn’t done any packing. As per usual I got quite stressed. What to take? Have I got all my meds, plus a bit extra? Don’t forget the ticket, etc. All of which meant no Sunday dinner in this house! We ended up having a take-away because by the evening I was really quite stiff and couldn’t stand to cook.

As for going to Claire’s, once again I opted for the coach because I was staying nine days. Why? Because I can’t manage the train when I have a suitcase, as I have to cross three busy roads in London to get a bus to go across town to another station to get the connection to Brighton. With the coach there is just one change at Victoria station and I can manage the walk with the suitcase on the wheelchair. I do get a few strange looks, even when pushing it without a suitcase on it. It doesn’t bother me — they don’t know what my syndrome is and what it entails.

The only problem with the coach is that it’s a nine-hour journey, as opposed to three on the train…

As usual Claire had jobs lined up for me. So, if I wasn’t  dead-heading plants, I was putting the rubbish stuff Claire stores on her TV planner onto DVDs (she is more of a technophobe than I am, so it is said).

We still managed to get out and about as the weather was so good. Despite Emily (my niece) begging me to stay, I had to get back as I had an appointment with my neurologist the following day. I did have one bad day — what I mean is one day that was ‘badder’ than the norm. I was up early, and watched a film from the planner, and then I watched another. Before I knew it, it was mid-afternoon. Because I had been sitting for so long, I could barley walk. My back was jerking and I was very stiff. Not a good combination. There was no way I could loosen up, so I took more medication and a glass of wine, and watched another film. I couldn’t have read a book as I was too shaky. Anyway, it was self-inflicted, so I don’t deserve any sympathy.

November 2011

I’ve said it before and it’s time to say it again — if you have got this far reading my story, I applaud you for your interest and patience.

Last December I attended a conference for rare diseases in Paris. Because the UK part of the train journey home took so long (details told at the time) I received a 1st class return ticket to London by way of apology. I began my freebie journey to see sister Claire one Saturday at 6.30am — so of course I was up at 4am because I need time to de-stress and check everything I had already checked last night! (I sometimes wonder if I have OCD too, hehe). 

David drove me to the station and off I went. Alighting at Kings Cross, I sat in my wheelchair to cross the three busy roads to get the 73 bus to Victoria station, where I met Claire.

She had a list of places she wanted to see, so off we set. As we passed Buckingham Palace, we saw the changing of the guard. We have both seen it before, so trying to leave part way through was a bit of a challenge (I wonder how many people had wheelchair footplate height bruised ankles?).

We cut through one of the roads on the Mall, trying to find the first destination, the Stephen Wiltshire gallery. He is a guy with autism. He travels the world and even from a glance he can later paint the scene perfectly. Of course, Claire had an idea where it was. In other words, we were lost. I have to say being lost was really good fun. We found ourselves asking a policeman a) directions – he didn’t know, and b) What are these buildings around us? Apparently, we were standing behind Prince Charles’s house, sorry, residence.

The policeman had a rifle so naturally I asked if I could hold it. (Claire could have taken a photo). Thank heavens he said “No”, or I may have ended up shooting someone (I would, of course, have blamed it on the startle response). Footnote: When I was normal, David and I belonged to a gun club. Small fry, as we only used 2.2 rifles.

Back to the friendly policeman: When we asked him what the building to his left was, he replied: “I couldn’t tell you”. We were intrigued, was it MI5, perhaps MI6? “Why can’t you tell us”.  I asked. “Because I don’t know” was his reply. We were all hooting with laughter.
While we were chatting I had been standing only to find I had stiffened up and couldn’t walk. Claire had to push me until I had loosed up a bit. We managed to find the gallery and yep, I couldn’t get upstairs, even with a handrail, so I spent quite a while looking interested at the work on show on the ground floor.

The next stop was the Victoria and Albert Museum, as Claire wanted to see the post-modern exhibition. The museums in London are free, but there was a £12 charge for this exhibition, but as I am disabled there was no charge, and Claire went in as my carer. To be honest they should have paid us to go in  — we couldn’t wait to get out. It has given me a few ideas though. I am going to put a packet of fags on top of a mug of coffee, and call it ‘Liz’s union break’ and submit it next year. To be fair, it could not be worse than what we had seen.

Anyway I enjoyed the sculptures as they had a lot of works by Rodin. Unfortunately, two of my favourite pieces, ‘The Kiss’ and ‘The Thinker’ were not there. One of the staff told us to look in the Tate. We Googled it that evening, the member of staff was wrong, unfortunately.

The weather for our trip was fab, so we sat in Hyde Park drinking coffee, with our coats off, overlooking people rowing on the lake. After eating we walked/pushed the wheelchair and headed off to Soho, ending the evening in Covent Garden. We could have stayed there listening to the live music for much longer than we had time for.

And then it was a bus trip to Victoria Station to get the train to Brighton. I had managed to walk from the bus, but once inside the station, we heard that the next train departing to Brighton was about to leave. I sat in the chair and Claire ran hell for leather to the train. (She told me later that she felt as if she had road rage, as she tried to dodge people in our way. To be honest, I can’t remember holding on to my chair with so much fear). We got to the platform and I put my finger on the button to open the door — it must have been firmly attached, as my wheelchair and I went along the platform beside the train. Obviously I removed the said finger and we were both laughing our heads off at yet another Liz/Claire incident. We caught the next train, which was only about a 10 min wait.

Although Claire had bought a return ticket, it didn’t occur to me that I hadn’t paid for one. Must have been my lucky day, as there was no guard on the train, and so we just walked off the platform at Brighton, trying to look as inconspicuous as possible.

We finally arrived home and, armed with a cup of tea, we headed up to bed. It had been a really fun day, but despite extra meds during the day, I realised how much of the time Claire had had to push me around. Yes, I would have done some of the things we did, if I’d been alone, but I would have needed more help from passers-by. I think it has made me realise my condition is getting worse. Anyway, not to worry, tomorrow is another day — and it may be better!

Sunday morning, and I was up about 6.30. Claire crawled out of bed at 10am. We were both showered, ready and out by 10.30, heading back to London. I wanted to go to Carnaby Street. The last time I was there, there were stalls and it was still the place to go. Sadly, now it’s just like any other street, with the high street shops. A real disappointment.

After a quick stop for coffee, aka, a sit down for me (the wheelchair is ok when propelling or being pushed, but not as comfortable as a chair to relax in), we got the bus to Camden market where there were lots of stalls, loads of haggling and even more laughing. We had coffee overlooking the lock.

But we lost track of time and it became a rush to get me to Kings Cross and the train home. Fortunately, although we needed different buses, they were both at the same stop. Why oh why did Claire’s bus have to come first? I was absolutely fine until she got on her bus. Then I just froze. My bus pulled up within seconds, but it was a bus length away to walk, and I couldn’t do it! Claire could see me, but could do nothing about it. With my bus pass between my teeth, I ‘grabbed’ a couple of random girls and asked if they would help me to my bus. (The driver had seen me, and waited).

With help from numerous people, I managed to get on. Although the bus was full, people moved to accommodate me. It was amusing when a woman, who very proudly told me she was in her eighties, offered her help (she gave me step-by-step instructions when to ring the bell for my stop). By the time I got there, I knew the driver would need to put down the ramp, but he didn’t, so a guy jumped off, ran to the front and told the driver. I don’t often feel embarrassed, but as people watched me (out of concern) I just wished the ground could have opened up and swallowed me. I felt so anxious; I wasn’t even sure which way to go, despite the name of the station being right in front of me.

Anyway, the journey home was uneventful, and David picked me up from the train. Home with David is where I want to be now = safe.

I have done one session interviewing at Hull Uni.  Very enjoyable. The only other thing of note was the evening I went to see the switching on of the lights at Beverley’s North Bar. Beverley is a market town and the Bar is the only remaining ancient entrance to the town from the days when it had walls. The old Bar hasn’t been illuminated since Victorian times. David didn’t want to go, so off I went with wheelchair and car. Having arrived, my first encounter was with an ‘official’ and it was about parking. He was sorely lacking in Christmas spirit, so I parked more or less where he said I could not!

As for my mobility, I was okayish, but needed to sit in my chair. Having traversed the wobbly, cobbly pavements, I decided to take my life in my hands and propel along the road. There were already a few hundred people there so I decided to get out of the chair and lean against a car to take pictures. I got out my ’phone to record the event. The countdown began, and my camera was focused on the Bar, ready for action. All I heard was cheering and once that had died down, I was left wondering how I had missed whatever had happened. Where were the wondrous lights illuminating part of Beverley’s historic past?

I got back in the chair and made my way to the Bar. I asked this guy what had happened and what I had missed. Why, out of all the people there, did I have to ask the guy who had organised the event? After explaining it to me, I had to try and sound enthusiastic about what was really a non-event! There were two beams of light shining at the Bar, apparently, but you could hardly tell. Was it really anything to get excited about?

Anyway, I made my way back to the market place — still on the road, even though it had since been opened to traffic, it was more preferable than the pavements. As the evening had been so poor, I decided to look around to see if I could salvage anything from the evening before I headed home. No was the answer. There was a pub selling mulled wine (but I was driving) and mince pies (alas no, I am diabetic), so no joy there. So I drove around, taking photos before arriving home feeling a bit sorry for myself. That’s what November had to offer.

December 2011

So here we are at the end of the year. Hope you have all had a good one? For all sufferers, I hope it has been as good as possible. 

One of my brothers, Simon, lives in a village near Beverley. He was in the pantomime Snow White playing ‘Bashful’. I have to say he is in no way, shape or form bashful. I’m not really into pantos, but one has to support the family. I drove to the village hall but there were no places to park within an SMS-sufferer’s walking distance, especially one who took her walker rather than wheelchair!

I eventually found a parking slot. Out of the car I jumped (sort of), and almost ran to the village hall –NOT. Instead, I sat trying to summon up the courage to get out of the car. After about 10 minutes I saw Simon’s family crossing the road, so why didn’t I, a) open the window to let them know I needed help or b) bip the horn so they would see me. Instead, I just froze. The clock was ticking and I knew I couldn’t just sit there. I eventually summoned up the courage and got out of the car. All fingers and thumbs, somehow I managed to get to the village hall, by which time I was shaky and sweaty (what a delightful combination). Once inside, and with family in sight, I managed to calm down. I thoroughly enjoyed the performance and had a chat with the director afterwards (many moons ago, we were both members of Beverley Theatre Company) and he invited me to go again the following evening, which was the last night. Full of bravado, I said I would.

Obviously my anxiety levels were much lower at this point, so much lower in fact, that I stopped by the village pond, manoeuvred myself to the passenger seat and took some photos. It was lit up, and looked so pretty. Brought back some lovely memories.

Saturday evening approached and, despite my day-long intention of going, by late afternoon the anxiety started to build up again. So I didn’t go, which was a pants decision, as my sister-in-law was going and, of course, it was the ‘last night party’. They can be so much fun but not for me...

I had an appointment with the diabetes specialist nurse for a discussion about being fitted with an insulin pump. So here’s hoping it won’t take too long to sort out — and that it’s suitable for me. 

Off again on my trips, on yet another visit to Bruges with my brother Steve. The only difference on this occasion was that I slept on the top bunk. I was being kind, as I don’t have toiletry requirements during the night.

I felt sorry for those who had gone to Bruges for the winter fayre, as it was pants.

I may have said it before, but my brother and I tend to spend our evenings apart. He goes to the casino and I do whatever takes my fancy. I had been outside, or should I say on the deck, to have a cigarette. I came back and sat alone at a table. Within a few moments, three guys asked me to sit with them.  They were all widowers, and I listened intently to their stories. One of the guys was quite tearful. I truly hope I said the right things.

I took the opportunity to give them an SMS business card — spreading awareness is my middle name.

Bizarrely, I arrived home to find an email from one of them, which was nothing, less than an invitation for a dalliance. Thank you, but no, I’m married, I replied. A couple of days later he wrote again: “Can we meet up for a coffee”. “No,” I wrote. I didn’t answer the next email. Have to say, though, it was a real morale booster, as he must have been at least 10 years my junior.

Christmas came and went, but what a surprise for our 31st anniversary (I always forget as there is too much going on). David had made a card and inside was a holiday to Rome. Not until my birthday in March, which gives me plenty of time to shop.  On that happy note, it’s ’bye, ’bye to 2011.

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.


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.