I had one of those moments last night when out of nowhere, I was suddenly clicking together loads of different separate things, a bit like being faced with a jigsaw where all the separate pieces colours and shape suggest that each one belongs to different puzzles, but when brought together, a totally unseen picture appeared.
Over the last few weeks, I have had a lot of odd symptoms that were either totally new or were what I thought were returners, to be honest, I though I understood them reasonably well and just as they had been in the past were one-offs or isolated from anything else. I was lying in bed thinking about my legs due to the piece I wrote yesterday, when I suddenly remembered something I had spoken to Adam about and I think I also noted in a recent post, I have been having problems with walking recently as I have been staggering more than normal. Not to the extent that I look like someone who is severely drunk, more like I have been taking the odd sideways step, but it was often enough for me to have noticed. The reason, I first noticed them, was because they are different, usually when I stagger it is caused by the fact my balance is off, something I have lived with for years, but these were different. They were more as though I was being forced into quickly changing from one leg to the other because the first just wasn’t holding me correctly and it was my body weight that was pulling me off balance. I suppose the best description I can make, is to say it is like a painless limp, almost as if my leg just couldn’t take the weight and threw it back to the other one. I don’t walk any great distances these days, well there is a limit as to how far anyone can walk in their own home unless of course they live in a castle, but just walking to the kitchen and back it would happen two or three times, then settle for the next trip or two before suddenly reappear.
The next piece to click was the fact that I have also been having more and more problems just standing up in the first place. I haven’t been able to get off the floor by myself for a long time, but luckily I haven’t taken a fall for a while either another sign my balance is behaving, what I am talking about is just getting to my feet from just sitting. Just like when I am on the floor, my thigh muscles sometimes don’t seem to have the strength in them to push up, I am using props to help me more and more. These days I am leaning on my desk, or using the arm of the settee to replace the missing strength in my legs by using my arm muscles instead. The toughest place to launch myself from has been my bed, I have no issue with getting to the edge of my bed to get dressed thanks to the elevator, but the act of standing, well it is no longer elegant and I am actually glad that Adam is never there to see me. I all too often find myself in a sort of doubled up stance with my backside sticking out behind me, trying to find the pivot point between sitting in mid air and standing, it is a real case of launching myself. By the time I got to this point the picture was reasonably clear and I was feeling rather relieved, I had quite a different picture in my head and it wasn’t as simple as missing strength, I had gone along Adams normal route, worst case scenario, I just wasn’t saying it.
By yesterday morning, I had this horrific picture in my head that I was losing the nerve impulses and that was why they didn’t want to hold me. I was sure that I was going to land up with these useless lumps that weren’t going to obey anything that I wanted them to do. There is a huge difference between my legs just getting weaker and losing the use of them due to nerve death, I can deal with their lack of strength, I can’t fix it, but I can deal with it. I had gone with the nerve theory because of the lack of feeling and the fact that I don’t always know just where every piece of them are. I now honestly believe that I was blowing out of proportion, I get the exact same thing in my arms and I don’t have the slightest thought that I am losing them any quicker than the rest of me, so why I would I be losing my legs that way. I just wish that life with MS wasn’t this constant guessing game, not just on my side but as I discovered also on the doctors, I learned quickly that they knew no more than I do exactly what will happen next or what is behind something. I used to be able to see with ease the muscles that were wasting away but as the weight has gone on because they are wasted and unable to exercise, well seeing them at all isn’t that easy. It was one of the annoying things about being a fan or knee high boots, the one on my left leg kept falling down as the bulk just wasn’t there to hold it up. Just as I get more pain on the left side of my body than the right, I also am very aware that the left is also the weakest, both arms and leg.
Working out that it is just strength and not nerve death doesn’t help with the fact that if they were just going to give up under me I would land up on the floor, but it does mean that if I find that happening I don’t have the fear that collapse would equal useless. All my most recent falls have found me stuck on the floor without even the arm strength to crawl on all fours. My arms just can’t take the weight as they just collapsed the second I try to move and all I could manage, was a commando crawl, means I avoid the floor like the plague. It may be hard to get off the floor without things to pull myself up on, but it is even harder when you don’t have functioning limbs to help you to get somewhere where you can get up. For now I just have to carry on as if, in the knowledge it could happen, if things get worse well like it or not, I will have to call for help and a walking aid of some sort, time will tell.
Please read my blog from 2 years ago today – 10/01/13 – Emotional Fear
Two Rooms Plus Utilities 