I guess able bodied or not we all have fears and strange things that fill our minds for no reason at all. Understandably for some one with a progressive illness, I dread for what is to me, the start of the worst case scenario, being paralysed. I know from personal experience just how suddenly a limb can vanish and turn into just a dead and useless weight. I was really lucky that my left arm died as it also returned, not as it had been in the past, but weaker with even further lose of dexterity and a speciality act of dropping almost anything things, that the right hand would hold. My arm vanished over the space of a week, it just didn’t work quite as it should and then one morning I woke to find it was gone from the elbow down. The whole thing left me with this fear that if I am going to loose anything else it will happen when I am asleep, which is now how I spend the majority of my life. Yesterday afternoon my mind did one of it’s powerful memory games, I had just got into bed and made myself comfortable when for no reason I “knew” I was paralysed, I wasn’t of course but my mind did an instant job of telling me so. I lay there for about a minute, almost scared to move in case I really couldn’t, as I moved my leg there was a shearing pain in my spine which stopped me for another few seconds before trying again. I don’t know where the pain came from as I didn’t have any pain before going to bed and I have had none since, but it didn’t help when it came to the imagination game. I guess we all have mad things in our minds but when you combine it with fact, well it opens up your imagination to go anywhere it want to.
Imagination aside I do really fear that day when I loose one or both of my legs. Loosing one arm makes life really difficult, but apart from my wheelchair over a few weeks I found a way round everything, but loosing a leg or worse still both, I really don’t know how anyone copes where a wheelchair is of no use. I know that years ago I landed up on crutches with one leg in plaster, that wasn’t to difficult, yes there was quite a lot of spilled coffee but other than that I coped OK, it really is loosing both that scares the hell out of me. I have had to put a lot of thought into the future possibilities as I have no other option when it come to where I live, so what ever happens next, has to happen here and has to be worked around to live in this environment. Try it yourself, just look at where you live and imagine how you would be able to manage. It isn’t one of those things that any of us think about when we go to by a home. Not once did we think about the possibility that one of us might be housebound in the future, we bought our flat just a year before they diagnosed me with MS, but even then I didn’t imagine that consequences of that happening so quickly, if I had, we would have moved. We all walk around believing that our lives will be simple and straight forward, but the stats says that we are actually making a huge mistake in doing so.
I seem today to be having one of those not quite here days. It’s taking me a really long time to sort out what I want to say and add on to that my typing has gone completely made. I normally touch type but I just can’t find the right key and I am also hesitating over the next key to hit, as they stop and hesitate then hit the wrong one. It is taking ages as I can only types one sentence, correct it and then sit wondering what the next sentence might be, some are taking several minutes each and even then I have deleted loads as the just made no sense at all. In other words this is turning into a long slow process. It is as though my body wants to go into shut down and just sleep where it is, unfortunately nothing new there then. I could try and blame it on staying up late last night to watch “Dr Who” but that was only about 40 mins to long, not exactly pushing my body to the limit and beyond. If I am being 100% truthful I don’t think I have been awake now for several weeks and with no change to my medication it has to come down to me being tired without any help. Living constantly with this feeling of being on the edge of shut down does in itself get tiring. It makes everything more of an effort and everything more draining than it was before, it doesn’t matter how easy the task should be, it will steal more energy from the already depleted stock. I have tried to trace back the point where I stopped sleeping standard times per day and it appears that it was about 8 or 9 months ago, about the time I stared having problems with my diaphragm and breathing. Combine that with my MS and I guess the reasons are clear, but I don’t want to loose any more hours as my life is getting shorter all the time, not as in I will die sooner, just that I will sleep through more of it. Yet another thing I was never warned about, or discovered could happen, I can’t help wondering how long I will eventually land up spending in bed out of any 24 hr period. Mind you the way I am feeling at this second in time, I may be spending many of those sleeping hours here instead of in bed.