Well, here we go again with a Very Happy 2013 to all. Just to let you know that in 2014 my PA, Nicky, pressed the wrong button on my laptop and I lost almost everything, including my diary, so I am looking back at the 2013 calendar in the hope I can ‘re-write’ the events of the year.
Nothing unusual to report this month as I can’t understand some of the things I have written in Liz’s shorthand!
Yet again not much to report apart from Uni, hypos, and spasms. One thing to say is that since I have been using an e-cig, my usual morning lower back spasms have stopped. (Only that one!).
We went out for a meal with Martin and Sue. The weather was foul. As I got out of the car my hand slid along the top of the car and I fell backward and really whacked the back of my head. For my starter I had aspirin and water. Main course zilch and I was able to get out of dessert by telling them I was diabetic. They wanted to take me to A&E, (notice I didn’t say which hospital?). I may have had a pounding headache but I was still able to convince them I would rather my head chopped off than go there. Having got home I went to bed with more aspirin. Got up the next day and breakfast was a cuppa and aspirin. I could feel the lump on the back of my head which was disappointing because when I get a bruise I like to show it off, but I think shaving my head would have been a bit on the daft side.
I got a ‘phone call from Hull Royal Infirmary asking me about an SPS patient on their ward. She was in pain and having spasms all the time. She read her medication sheet to me. I was quite shocked about the different meds and the amount she was taking. The nurse asked if I would visit her. I said I would and was told I could come at any time. The patient is a member of the support group, and when I went in she just cried and said thanks. I sat next to the bed and each time she went into spasm I held her hand or whichever part of her body where the pain was. She seemed to relax. I don’t think she screamed or cried while I was there. Don’t get me wrong, I am not claiming to be Mother Theresa, it’s more a case of a fellow sufferer instinctively knowing how to ‘be’. I had to leave to get home to cook an evening meal. On the way out the woman in the next bed asked if I could come back again as it was the longest time she had been quiet. I had a word with the nurse and asked if her meds could be looked at, she assured me she would. I went a couple of days later and she appeared to be much better.
The golf tournament ‘Order of merit’ David did last year has started again. The proceeds go to our charity.
I spent a few days at Claire’s. (As I am writing this in 2014 I can’t remember what we did). In fact the only notable event was the day our new neighbours moved in. I was in the garden and decided to move the pots which were in the pond – you know what I am going to say next! Yes, I fell in head first. I kept my mouth closed to prevent a fish swimming into it. Don’t get me wrong I love fish, but I prefer them dead and battered. Once I managed to turn around one of the pots fell on top of me. Once I struggled out I was quite pleased as I still had my glasses and flip flops on. I held onto my walker and as I got to the door I cast off my jumper, belt and flip flops. Once inside I left my jeans in the garden room, vest top in the hall then managed to get to the bathroom to remove what was left before getting a shower. I think two showers and a ‘bath’ in one day is quite enough!
At the end of the month we went to Buckinghamshire. Staying with Mike (David’s brother who often descends on us, as he will again in a couple of weeks) and his wife Jane, for the wedding of our niece Emma. It was a super time for all. I bet you are the same – nothing to go to, and then get doubled up. Having gone for the wedding we missed a friend’s birthday bash. Oh well, not to worry. My best friend Vanessa is now 60, and about 50 of us celebrated at a super fish restaurant in Beverley. Yet again we all had a fab time.
One day I was on the ‘phone with a group member who is also diabetic. She asked if I was OK, of course I said yes. A little later she asked me to do a blood sugar, I told her again I was OK. The next thing I knew was I was on the floor with a policeman holding me down. I hadn’t noticed the ambulance crew. At that point David walked in. The policeman asked him if I was an aggressive person, David knew the problem and asked him to let go of me. As soon as he did I just relaxed. So it was a hypo and SPS in combination. The SPS part was being held down knowing I was not in control. (Look at the site, as it will explain about being in control). Everything else this month has been the usual hospital appointments etc.
Early in the month I was driving back from a park in Hull. I had been talking to a couple of people and then got in the car, but I hadn’t tested my blood sugar before driving home. I felt a bit strange as I approached Beverley and I felt the warning signs in my eyes. It’s a bit like having stared at a light bulb and then you close your eyes, you will see the light. Despite that I still drove past my turning home, Apparently I was driving up and down the kerb and ended up crashing the car into a sign post. There was a Turkish Delight on the passenger seat, which I ate. Almost immediately the police and ambulance were there. As my wheelchair was on the back seat, the policeman helped me out of the car. Thanks to the Turkish Delight my blood sugar was coming up and I was compos mentis. I was checked over by both the police and ambulance crew. The police arranged for my car to be taken to away. As usual in these situations, help was at hand. My neighbour, Nigel, put both my wheelchair and me in his car and drove me home. One thing I have to be grateful for is that nobody and nothing was hurt. I have decided to take myself off the road for a year. You may be wondering where David was. He was in hospital having a cataract op! (Husbands! never there when you need them, lol).
About a week later I was self-propelling/pushing my wheelchair home from the town centre. I arrived at the beginning of my home street. The next thing I saw was an ambulance… Fortunately, one of the women who saw everything had looked through my ‘phone and realised how close to home I was. She rang David who drove down and took me back. I’m not sure if the ambulance crew treated me or if the women saw the Lucozade in the back of the wheelchair and gave me some or perhaps David gave me it. Yet another memorable (sic) adventure.
Apart from working at the Uni, meals out and all the family giving my brother Steve a surprise 60th birthday party, there is nothing else of note to say.
I had an appointment with my diabetes specialist nurse, and guess what? I had a massive hypo about 5am. Unfortunately, I had to cancel. It was actually serendipity, as you will see later. I have still been working at Hull Uni, but now I get a lift there and a taxi back.
Anyway I went down to stay a while with Claire at the end of the month.
Had a super time with Claire, didn’t come home until the 9th. In the meantime Mike had been up, so David wasn’t alone all the time. On the 17th I saw my diabetes specialist nurse. The idea was to try me with an insulin pump. If I had seen her last month I would not have been offered the new top of the range pump called OmniPod. For you diabetics out there I will give a (hopefully) short version of how it works. Everything is done via the pod. One can do a BM, and if you want to eat, put in the carbs and it works out how much insulin is needed and bluetooths to the pod which you can decide where on your body you want to stick it. The pod needs changing every three days. It takes time to get the best results. If only it made coffee too!
I got new specs this month. They are varifocals which is a good idea as I wear them all the time, which means I am not constantly shouting “Where are my glasses?”. Although I still keep losing my e-cig…
Thanks to a generous woman at Uni, I now have a motorised scooter which I call Blue, simply because the plastic bits on it are blue. (Back racing again, well almost as it only does four mph). I used it to go to a car boot sale at the Grammar school – I can tell you are thinking ‘how?’. I packed a big bag, put it where my feet should go, feet over the top of the bag and off I went. I met Nicky (my PA) and parked myself next to her. Didn’t make much, but managed to get rid of a few things.
We were invited to my brother David’s to celebrate the birthdays of both their kids, Megan 21 and Josh 18. SPS had got the better of me that day, spasms, rigidity and anxiety which meant I couldn’t go. Only managed to call to wish them Happy Birthday.
I don’t suffer too much with the startle response, in fact it’s usually caused by things in my peripheral vison, ie someone approaching from my side will startle me, or quiet noises – not loud ones. Weirdly, if my left hand gently brushed against a glass, cup etc, the afore mentioned item would quite likely end up on the floor.
One day I was using the oven. I’m not sure what happened but my left hand jumped up and I got a rather nasty burn on my left hand. I have to keep seeing the practise nurse to dress it. Later in the month we were back in Buckinghamshire for another wedding, Emma’s sister, Lynsey. On the morning of the wedding Jane and I baked about 200 cup cakes for the wedding breakfast. Because they have so many friends, they baked too. This may sound a bit on the ‘stingy’ side, but they had all planned it together and it was super. The following day the two daughters and their husbands came for Sunday dinner. It was a dress down day. Girls in onesies, me in Jane’s pyjamas. Sometime after they left I was making a cuppa. I had just poured boiling water into my mug when my head brushed against an open cupboard door. The startle response hit hard and the full mug spilt down both legs and my right foot. I have never felt pain like it. I screamed and they all came to my rescue. David and Mike held me up whilst Jane got the pyjama bottoms off. They all said I should go to A&E, but not Liz! Having been lead to a sofa, my feet in cold water and wet towels around my legs, all I could do was take some pain relief. The towels had to be changed a couple of times as they were steaming. I didn’t get much sleep that night, and had to wear David’s slippers to travel home the following morning. It took quite a while before the blisters finally burst, during which time I was back and forth to the practice nurse – again.
Other things this month have been ‘usual’, but my brother Martin and I went to see Chris Smither. He is a fab folk singer and guitarist. In fact, perhaps the only event where I didn’t suffer any injuries.
I am still seeing the nurse to have my legs treated. I went to the Beverley food festival in my wheelchair. The front wheels are small, I need to look for bumps and holes all the time. There must have been one hole I didn’t see which led to me flying out of the chair. Fortunately I got away with a small injury to my right arm.
We had Christmas dinner with Martin and Sue. She made minestrone soup for Chris as it’s his favourite. Chris started a new job as a groom not far from London, so there was quite a lot of traveling to get his gear there.
So, that is my diary for 2013.
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.
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.