Today, tomorrow or the day after?

I don’t think I have ever had a symptom that has progressed quite so quickly as the one affecting my legs. Since they started to simply melt into the floor without warning, when walking about six months ago, they have climbed the symptom chart now holding a place in my top ten. Those top ten, fluctuate daily, but I don’t believe they haven’t been there or around the top five for at least over a month. From an occasional distressing moment to being in my thoughts every time I think of standing, is progression on hyper mode. I never know now when I stand to transit from where I am, to my wheelchair, or vice versa, if my legs will hold me at all. The once gentle melting motion has turned into a sort of frantic tremble followed by a distressing collapse, where luck plays a huge roll, as to being able to go anywhere.

Much of the time my movements have turned into dramatic jolts, rather than a smoothness of any kind, and to make matters worse, the arms I have been trusting to rescue me, have now joined into this game. They too are refusing to take my weight consistently. It is something that shouldn’t really surprise me, as it was their weakness that meant crashing onto the floor, was a position I needed rescuing from. Just as the joints wouldn’t lock so I could crawl to a place of safety, they now won’t lock for me to lean on like sticks, my joints are now slipping and leaving me relying on my much-withered muscles of old. I feel as though my entire body no longer has any true strength left in it. I did hope that the action of propelling myself in my wheelchair, might just have built up a little muscle of some use, but just as they wilt by the evening, they refuse frequently to be used for anything else.

I have for years now lived with tremors in my spine. Something I have written about many times. It was the first tremor to appear, just eighteen months post diagnosis. At first, it was distressing, but I slowly became used to it. Sitting still is now something that I don’t do a lot of, unless, I have my back pushed into cushions, or when I am hunched forwards and my body braced by my elbows and forearms on my knees. So to find that both of my arms and legs are now also twitching, even jumping, hasn’t really been something that I have welcomed. By the time I join Adam on the settee in the evening, I am tired, but looking forwards to a restful couple of hours. That aspect is slowly being eaten away. It’s not as though they are flying around all the time, but it will happen at least once in every fifteen minutes. Like everything else it varies between gentle and mildly annoying, through to aggressive and highly annoying. Should I decide to do something as simple as reposition my foot on the floor, that foot won’t simply move, but will fight back and flick and kick while I find it’s new spot.

I don’t know why, as it makes not the slightest bit of sense, but I kept just hoping that it would all just go away. Why would they just go away, nothing else has, so why would these? I think I had this idea in the back of my head, that they were some sort of oddity, one of those things that just were, and as easily could be not there. No such luck, they just keep getting worse and are now showing themselves in some of the oddest way and at the oddest times. Like when I am stubbing out a cigarette, instead of a smooth couple of stabs at the ashtray, on the second or third, my shoulder and upper arm will simply collapse. There is no reason for it, no strain, or speed, nothing other than I am using it. Even when at rest, I have seen my fingers dancing, they most of all seem to take great pleasure of getting in the way of each other when I am typing. For me, that has to be the most annoying action, as I type rather a lot.

It isn’t something that I usually do, but I have a growing vision of the future where most things will become difficult because of them. We take every action we make for granted, it is something that most of us have to really think of. If you want to have a drink, well your hand goes there, picks up your glass and without being asked or drama, it just lifts your glass to your mouth. What is there to think about, we’ve been doing it since we are children, just as we learned to stand and to walk, as adults, we have nothing to think about, we just do whatever we want. But should you reach to pick up a pen, and you see your hand, I repeat your hand, hesitating, almost stuttering in the air, unable to grasp the desired object, without hitting the surface of your desk or knocking into other objects. You witness it, with the same difficulty as your hand appears to be having in performing what should be a simple task. It doesn’t get any easier, even if that is the fifth or the fifties time this has happened, because, it shouldn’t be happening, not to you, not to your hand, not your foot, not your leg. Add to it, the insult that you did just the same action five minutes ago without issue. It’s an insult, because, your own body is breaking the first promise you ever heard, to do what you want, when you want to without issue. That broken promise hurts.

For me, the unpredictability, the never knowing when or if, well, that is hard to deal with. The not knowing if it will be tomorrow or the day after, or even a year from now, that they will refuse totally for the very last time to do anything with ease. That more than anything is the true pain of this illness, the fact that all of it, is so unpredictable. I know that we all live with the unknown, that none known factor if we will be alive a single second from now, but I along with all who share my conditions, have true reason to feel it more than most. The trick is, if there is one, is to not to worry about the next second, but to give thanks for the one that’s just gone, no matter how hard that second was.


Please read my blog from 2 years ago today – 15/04/2014 – Priority one

Uncomfortable. One word that sums up my entire morning so far, everything seems to be aching and once more there is no single position that allows me to stay still for more than just a few minutes. Mornings like this inevitably make everything else slow or hard going, when your mind is pulled constantly to this bit or that bit that can’t put up with the position it is in, well you loose track, become fractious and quite simply find yourself going round in circles, repeating, or missing out steps along the way. There is also a growing desire to just stop, to give up trying and to slide back into bed where at least comfort can always be found. That though would be giving…..