I’m sitting listening to yet another TV show, about staying healthy, and wondering not just why, but if this short of show, has actually changed anyone’s life for the better. There must be thousands and thousands of hours of this sort of programming shown worldwide every year, but does anyone really change their diets, or lifestyles, because someone on TV, has told them this or that is the way you’ll live longer. I have to say that I have never once actually paid attention to any of it, but I still watch, which in itself is odd. I can’t help wondering what is going on here? Look at the ratings and the shows are clearly popular, in fact, there are some channels dedicated to them, but look around and the evidence that’s out there, shows they aren’t working. If they were, we would all be pin thin joggers, who eat nothing that could do us any harm. Mind you, that might be rather hard to find, if, you listen closely to all their warnings. It’s just a thought.

A couple of months ago, I wrote about the problems that I was having with my hands I was having following moving back into my wheelchair. At first, it was aggravating my HMS and my thumb joints kept popping out, not just when I was using the chair, but when I was doing nothing. The good news is, that they aren’t doing this nearly so much. I think, that the persistent use of the muscles in my hand, has strengthened them, and the joints are being held in place better. The bad news is, I am getting more and more spasms, and my entire arms, aren’t getting stronger, just weaker. I can’t make a simple trip in my chair to the kitchen and back, without being left with pain my upper arm muscles for the next half hour. I don’t remember getting spasms in my hands, other than the odd one, very occasionally, but that has totally changed. I never get through more than a handful of hours now without them doing something odd. It can be anything from, spasms so painful, that they stop me dead and I have to massage them, in a hope of breaking the spasm, to twitching and tremors that are just plain annoying. Clearly, I do a lot of typing and have done now for years, but in the last two months or so, I have found my left hand doing the oddest of things. I’ve joked for several years now, that my Dyslexia had spread to my fingers, as I frequently hit wrong keys. Yes, I am Dyslexic, I was diagnosed before it had that name, in those days they called it word blindness, my father, just called me stupid. Now it’s not just as simple as hitting the wrong key, because, my fingers aren’t where my brain think they are, now they’re just stopping in mid-air, shaking over the keys, but unable to hit them. My right hand isn’t affected nearly so badly. There are far fewer spasms in it as well as odd movements, but that isn’t really surprising, as my left hand has been weaker for years, ever since it died and took a year to return.

It has changed so much in the last month that I am now beginning to worry about it. I’m not transfixed by it, but there are so many small things happening, that just weren’t there before I returned to using them to propel me. I can remember quite clearly what life was like when my hand died and the problems that it caused. I don’t think that my hand is about to die again, it doesn’t feel that way, but the rapid increase in odd behaviour is suggesting that it is just going to keep progressing in a direction that I really don’t like. When you can’t trust your hand to do what you expect, it makes life difficult, and not just when you a typing. Everything from eating to holding onto things becomes a lottery, you simply don’t know for sure, that your hand will complete a task or throw a spasm midway. Being right handed, is a plus right now, but there is this niggle that says “For how long”.

I can remember years ago a conversation about if you had to lose part of you, what would be the worst thing to lose? Well, as I have proved, losing your legs is a huge inconvenience, but it is one you can get around. Sight always sounded like the most horrific, but I again have proved to myself, that I can get around the house, find what I need and functions without seeing. With an app, that reads back what I type, well, I could still manage as I am already a touch typist. But losing my hands, well that would stop everything. As I already know, losing one hand isn’t the end, but it is incredibly hard, even though it was my left and not my right.

I guess, that when you have a collection of conditions like I have, especially ones that are attacking the nervous system, it is something we are bound to at least think about from time to time. Our conditions are so unpredictable and often, do things without any warning at all. Those events are distressing, but waking up finding some part of you no longer works, isn’t half as bad as watching something slowly change. Almost daily, being aware that this or that is just that bit worse than it was, or it’s doing something totally new that you had never, even thought possible. It’s like watching yourself falling apart, diminishing bit by bit and become something that you don’t like. Progressive illnesses, whether they move quickly or slowly, are quite simply cruel. I used to think of it as aging on speed, but I realised a long time ago that it’s worse than that. At least, when your aging, you’re doing what everyone does, it is just part of the progress of life and all those around you, are doing it too. Yes, I could look at my health that way, but that would be a lie, because I know, that I am on a progression that no one has done identically before me. On the plus side, it is a life of discovery, but it’s sometimes hard, to find the adventure in what you’re losing, as most adventures are about gaining. Yes, I gain knowledge daily about what my body can and can’t do, but that knowledge, is never, a good enough compensation for the losses as they appear before my eyes. Progressive illness is cruel and in my case, relatively slow, that is my blessing. Everything that has happened to me, could have happened in one catastrophic night, but I have been given years. At times it speeds up, at others it slows down, never stationary, even when I, at first, think it is. Percieved stationary, generally turns out to be something sneaky going on inside. Out of sight, can never be out of mind as that is just plain dangerous. I can’t stop any of this, no one can, but I hold onto my blessing as it has given me time, time to live, time to spend with those I love and that, it is the biggest blessing of all.

Please read my blog from 2 years ago today – 25/01/2014 –  What if

I am an avid news watcher so I was surprised that with so much coverage of the flooding down south, that although we have seen the odd elderly person being assisted out of there homes, there had been no mention other…..