I woke this morning at just before 5am, my legs were screaming at me in a way they haven’t done for a long time at night, in fact, I don’t think I have felt it like that since before I was prescribed morphine. It wasn’t just the spasms that were shouting for my attention but I also had pain coming from the work that the chiropodist did yesterday, both my big toes are red and angry where she clipped and scrapped away all the dead skin, with them so raw the pressure of the duvet was just too much for them. I sat up and reached straight away for my booster tablet and glass of coke, I knew that there was nothing I could do other than take the meds and try to massage them until they calmed. Breaking the spasm isn’t the end of pain, it continues to hurt for a considerable time after, so I took myself into the kitchen for a cigarette after adding more Savlon to my toes. As it was so early I laid back down and tried to go to sleep, but as I lay down I heard an alarm clock above me and our neighbours starting to move around. I lay there just hoping that I might still find sleep but when 6:10 came around I gave up and headed through here to start my day. 9:40 and I still have the dull ache in my lower legs and for some reason a headache, I guess that could be just because I am still tired and once I have things sorted to a point where I can, I am heading back to bed to try sleeping again.
One thing that I didn’t mention yesterday was that I spoke to the chiropodist about the fact I keep find the balls of my feet taking the weight of my legs when I am sitting down and how I only seem to sit flat footed if I really think about it. She confirmed just what I thought that the muscles in my lower leg are tightening and setting in that position, she said it might not work but that I should try my best to extend the muscle in gentle exercise fashion whilst sitting. I totally forgot last night but I have been trying this morning and I am surprised just how small a distance I can lift my toes upwards, proof if I needed it that my muscles are starting to set. I always knew it was a possibility, but this is the first true sign of it and yet another thing that adds onto my list of things that says progression is really taking place. I can’t help wondering if it is also the reason why I seem to have had worse spasms lately, with the muscles already sitting in a tighter position, I just can’t help wondering if that is what is making the difference.
I remember quite clearly the first time I was driven mad by spasm, I was working as a bar manager which meant I was on my feet most of the day and night. As it was a hotel bar I was expected to wear uniform and to wear court shoes or higher, not the best thing for anyone’s legs, but when they started to cramp, as that’s what I thought the problem was, I went to the doctor. He prescribed me with quinine tablets, I thought it odd but I took them, surprise, surprise, they didn’t work. I know now that I was in a relapse but I just thought I was run down because of working far too many hours and drinking far too much after hours. That’s the problem with countryside hotels, you live in and residents can keep the bar open as long as they keep drinking, this, of course, means you land up drinking with them much of the time. I all to often found myself not coming off duty until around 4am and back up again to open the bar for business at 11am. For a period of 6 weeks I was just wiped, but I had no choice but to keep going, more than two days off and I would have found myself out of a job, small hotels don’t carry people at all. Spasms were just part of my problems, I was trained and in charge of the cellar which included looking after the real ales, which entailed a lot of heavy lifting and shifting, which with muscles that didn’t even want to be used wasn’t any fun at all, believe me. Despite all of this, it was a job that I loved and always had a secret wish to return to at some point in the future, just like when I was DJing in later years, I was basically being paid to have fun!
I am sure there is someone out there right now in just that same position, working on in a totally unsuitable job, totally unaware that they have MS as the doctors misdiagnose over and over again. It is really hard to know if working on like did more damage or if it made no other difference other than making me feel like death warmed up. Once I was diagnosed I was in a sedentary job so there was never any discussion with the doctor about my ability to work, the issues only started when I started to have problems with memory. I don’t remember ever anyone even asking if I did any sports, heavy work, or physical hobbies prior to the point where I crashed into progression and they were impossible, so unimportant. All I can do is base this next part on my own experience but right up to the point when everything went wrong all at the same time, I was always as active as possible right through my relapses. In fact, I only stopped working for 3 of them, all 3 were put down to different things by the doctors, but all three had me incapable of doing much at all. In between I continued to live my life at its normal overactive style, did it do me harm or good, as far as my MS goes, impossible to tell, but from my own well-being and happiness, returning to normality was essential.
I don’t know if it is what the medics would recommend but I think the reason I dealt so well with the relapse remitting stage is two-fold, first, I didn’t know what was wrong with me. When you are either told there is nothing wrong, or you have a virus or something, well you just get on with it and there is no one running around after you telling to things easy. The second reason is just like now, I was happy! Yes, I had spells of poor health, but between them once I had divorced my first husband, I was more active than others, including long hours of exercise, dance and over zealous cleaning. Did that change the frequency or depth of my relapses, I just don’t know, but I honestly think it did, just being fit and healthy through the rest of the time logically had to have helped. I just wish that I was able to do a fraction of what I did then.
Please read my blog from 2 years ago today – 27/03/12 – Summer Wipe Out
It was the first day of really warm weather yesterday here in Glasgow and for me the first day of being wiped. Once you have had MS for a few years in a strange way you get used to the pain and the fatigue but every summer this one gets me and surprises me. I don’t know the medical reason why this happens but it is really like someone has removed your batteries. It isn’t the same as the normal tiredness it really is a total withdrawal of energy even for simple movements and the drained feeling grows as the heat rises. Once out of my childhood years I really quite quickly lost the love of summer, when it no longer meant long days playing it lost its luster.