Well Chris’s job didn’t last long. They were paying him a pittance, all cash in hand. Having queried them about it, nothing was resolved. He handed in his notice. They asked if he would work an extra week, which he did. Then would he work another month. I’m sure how he told them he knew they were taking him for a ride (pardon the pun). So it meant another journey to bring him and all his stuff home.
Apart from that incident, not a lot has happened this month other than the dishwasher breaking and our fence blowing down. And Nicky took me to the donkey sanctuary to see my adopted donkey Billy.
David thinks I am drinking too much. Mmm, am I ?
I have done a few sessions at Uni, seen Billy and had a lovely time in Devon thanks to Nicky, who moved to Beverley from Devon some time ago. Anyway, we visited a lot of her friends. We played skittles with the team she used to play for. I really wanted to try it, so with one hand holding a rickety ball in one hand and hanging onto Nicky with the other, I flung the ball and, believe it or not, I knocked all the skittles down. I also met Nicky’s former husband. He works with wood (not sure what his job title would be as he is self-employed). No idea how two super pieces of wood and a rather large amount of homemade cider ended up in Nicky’s boot! The friends we stayed with took us to a beautiful beach. Before we left for home we treated ourselves to a Devon tea, at 10.30am. Yum, yum. On our return, Nicky deposited the wood in a part of my garden, aptly named Woodhenge. No hypos, but a few mishaps when pushing my wheelchair. No real injuries.
We have had a committee meeting. Plenty of Uni work, including conference meetings. Plenty of meals out, but despite the pleasure of all of that, I have, at David’s request joined AA.
I had a super night out with my brother Martin. We went to see another folk singer I adore, Flossie. She is French and teaches French in a school in Newcastle. She has a wicked sense of humour too.
Vanessa took me to our old stomping ground, Beverley Theatre Company, to see them perform Bedroom Farce. I think we were involved with the same play in the eighties.
It was Claire’s 50th birthday. I got the train to our brother David’s home near Scarborough, and he drove his family and me to Brighton for the party. I got a lift back the following day with a couple of friends of Claire, who live in Beverley. I think by the time I got home Claire would have cleaned the house top to bottom and spent the rest of the day looking at her presents. There were some fab pics of her!!! Apart from a visit to Specsavers, there were no hospital appointments and nothing SPS-wise worth mentioning.
Saw my diabetic consultant, we usually talk more about SPS than diabetes. Well 45% of SPSers are type 1 diabetics. I have done a few sessions at Uni. David took me to Whitby to a 60s weekend. The events are always so friendly. We were chatting to a farmer, his wife and her sister. The sister always goes with them because he just does not stop dancing, so when one woman is exhausted, the other one steps in. I was in my wheelchair and he approached me for a dance. We had crossed wires, as he was going round the back of my wheelchair I stood up, then fell down. Once sorted we had a dance for about three minutes and then I had to sit down. I used to love dancing when I was ‘normal’. Martin and Sue have a blank canves which is their front garden. They asked if Nicky, who has a wealth of knowledge of the subject and I, if we would get the plants and then make the garden look good. We sourced the plants and (mostly Nicky) put the garden to rights. David went on a short golf trip to Norfolk with his brother, and he would never forgive me if I didn’t tell you that he won. I have seen my GP and had bloods taken. Unfortunetly it showed I have done some slight damage to my liver, obviously due to drinking. I am ashamed to be telling you about this, but I know many SPSers use either cannabis or alcohol to ease symptoms. If you use alcohol, just be aware how it can take over your life.
Nicky and I went to see the open gardens in the area where Martin and Sue live. We both used my wheelchair to carry plants we bought – good job I took it, lol. Despite not actually falling, I came close to it on a few occasions. In areas where I couldn’t take my wheelchair, I had to hold on to Nicky’s arm. It just takes an unseen pebble to set my startle response off. As this happened a number of times, I imagine Nicky’s arm will have one or two bruises. It is all done for charity and as usual I hand SPS cards to anyone and everyone each year. I was very pleased to have SPS recognised, as we received a generous cheque from them. I was very shaky when we arrived back at Martin and Sue’s home. As usual she had made quiches, salads etc, so we both pigged ourselves! It took its toll on me as I fell asleep straight away having got home.
I have seen both my GP and Neurologist this month; went to the donkey sanctuary; Mike came to play golf with David. David had bought tickets to see Status Quo in Scarborough. We were both really looking forward to it. We arrived in the afternoon, planning on having a picnic, but as we got out of the car David wanted something out of the bag, Oh no, the first thing he found was a small bottle of wine. He was furious, and rightfully so. Anyway we didn’t see Quo or even have a picnic.
I am finding it difficult to write this month’s diary. I was going to an AA meeting on my motobility scooter (I call it Blue) and had taken a small bottle of wine with me, which I drank as I took a short cut. One small bottle and I was almost drunk. What I haven’t told you is that since joining AA, I have still been drinking. Anyway, I didn’t go to AA that night, instead I took myself off to the other side of Beverley to the police station. I was greeted by a lovely policeman and when he asked how he could help, I burst into tears and told him I wanted locking up. He asked why, and I told him I was a bad person. He was very calm and sweet as he spoke. A few moments later a neighbour who is also in the police came to take me home. We were followed by a police car because being disabled meant she had a ‘duty of care’ and could have needed help as I may have fallen. David opened the door with a look of horror on his face. He did not speak to me, wouldn’t be in the same room, let me cook for him, separate rooms etc for a couple of weeks. When I asked him why, he replied “You make your decisions and I make mine”. About a week later he simply said he was going to visit his brother. I didn’t know how long he would be away, but I knew he needed the respite from me. As he left I told him I will be as sober as I am now when he came back. There was no communication while he was away. He came back about 10 days later. I opened the door and his face was a question mark, and I told him I was still sober. I am writing this in 2015 and still remain sober. So I will leave that subject for now.
I have had a mammogram and seen my diabetic consultant. David and I had a meal out, and also went to Martin and Sue for a meal. We had another visit from Mike. While David had stayed with him he hadn’t discussed our ‘problem’ but Mike saw the difference in me and during the time he was here he and I talked more, had more fun than usual.
My SPS is about the same as usual. No major problems. I still find mornings are the worst part of the day as my lower back seems to be at its worst.
I visited one of the members and helped fill out a PIP form for his wife. A PIP form is the replacement for the DLA form. I think this is the third time I have done this. Having said that, if I had to fill one out for myself, I would probably make a mess of it. So take note, get someone who knows what they are doing to help you.
Only nice things to talk about this month. I visited my GP (can’t remember what for). As I walked in, he took a double look and said: “You are not drinking are you?” He saw bright eyes, and weight loss, and I suppose a more smiley face.
Four of us went to a steak night at the golf club, where we had a super time. The only problem for both David and myself is sitting on uprightdining chairs for too long. We both get backache. David has five slipped discs and I have SPS! So as we left I had to have help getting to the car.
Nicky and I went to the Beverley food festival, which is super if you are not in a wheelchair. I managed to miss a lot as it was so busy. Never mind.
I’m not sure if I mentioned it earlier, but David has again organised the golf competition ‘Order of Merit’. It runs April to October. I had pictures of myself and the winner, which appeared in the local papers and the Hull Daily Mail. It’s a great way of raising awareness and getting some funding.
We had our bi-annual committee meeting this month. It usually takes two to two-and-a-half hours. Despite knowing who will be coming, and more or less what we will be doing, I get very anxious. ‘Unwarranted anxiety,’ which makes me stiffen up, and my back aches more than usual. It is a part of SPS.
We went to Martin and Sue for a meal, and despite a lovely time, it was onto the comfy chairs as soon as we had finished.
David and I went to the golf club for bonfire night. Hot dogs and burgers etc. It’s the best view of the fireworks, which are organized by the Lions.
It was Nicky’s birthday, so I took her to see a play at the Memorial Hall, which was performed by The Beverley Theatre Company.
Gadabout Liz decided to go to London. I was only staying one night, so I rang an old friend to ask if he could put me up. On the Saturday, I went to look at the poppies surrounding the Tower of London. It was packed, and my wheelchair and I had to navigate the crowds and steps. I had earlier applied to buy one of the ceramic poppies, but too late, they had all been sold. They made the precise number to match those killed in the First World War. The beauty of the poppies representing such tragedy was remarkable.
Later, I tried to make my way to my friend Cyril’s place. The first bus came and went as it was full, as did another four. Finally I managed to board one, as long as I could find a stop where I knew I could get to the 73 bus. Yep, I found it and made my way to King’s Cross station. By this time it was raining so I got a taxi. I rang Cyril to tell him my eta and, bless him, he was waiting in the rain for me. He insisted I sat in the wheelchair so he could run while pushing me. He lives in a studio apartment. I was going to take him out for a meal, but he insisted on cooking for me, and a very nice meal it was too. The following day I made my way to the cenotaph. The queue of people seemed to be a mile long, fortunately they were on the road side of the pavement, so I whizzed past them all. As I reached the entrance to Whitehall, I (truly) accidently caught someone’s ankle. Everyone moved, rather like the parting of the Red Sea to let me through. When I got to the point where we had to be, there was a police check. I said: “Don’t delve too deep as yesterday’s underwear is in my bag”. He laughed, just opened my bag and let me through. Again, with the help of the police, I was given the absolutely best place to see the wreaths being laid – until the army of men wearing busbies blocked my view! It was a good job David had recorded it on TV, as I saw nothing! I managed to get the train home – on time, and got back to Beverley in super quick time, and there was David waiting to drive me home. Despite no real problems SPS-wise, it took a few days’ rest before I was able to get back to ‘normal’.
A couple of stints at Hull Uni. I don’t know if I have mentioned it but Chris is very much into anti-fracking, so we took food and a few days later we took the wood from our fence which had fallen down because of the high winds. As usual we spent Christmas day with Martin and Sue, along with other members of the family. David and I went to the donkey sanctuary, then out for a meal on our wedding anniversery. On New Year’s Eve we two idle old gits just stayed in! Bye Bye 2014.
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.