When you discover you have a toothbrush stuck up your nose, you quite quickly realise, something has gone wrong. That was exactly the position that I found myself in last night. Sat in my wheelchair, looking at myself in total shock in the bathroom cabinet mirror, while removing my toothbrush and washing it. All I had done was shut my eyes for a second, One second and the hand that I had been watching as it brushed vigourless at my teeth, without my knowing, had change position totally. This isn’t the first time that my muscle memory has failed me, it does it all too frequently these days. I reach to pick up my glass, which is sat just where it always does, and my hand is suddenly grabbing at the air, striking out in desperation in all direction, simply because I wasn’t watching it. If I am not in total visual control of my actions, they start going wildly wrong. I have to admit, that toothbrush up my nose is the most ridiculous and extreme, not to mention painful, one yet. But it has made the point perfectly. Things are going wrong. On the surface, it sounds small and comical, but its impact is growing almost daily.
The first thing I noticed had to do with moving around the house at night. For a long time now, I have been able to get from my bed to the toilet, then one to the kitchen to smoke a cigarette, before heading back to bed, with my eyes shut. It’s a skill I know not many have, or have even considered acquiring, but with continually failing eyesight, it was one that I thought prudent to learn. I had taken it further than that, it has taken me a while but I have now managed to map out almost the entire flat. Not surprisingly, when I switched to life in a wheelchair, it was a skill I had to almost totally relearn. Footsteps are quite different from wheel pushes, in more ways than you’d think. When you are on your feet, you still have two hands to help you feel your way should you suddenly doubt yourself. You can find those familiar items, things that distinguish you location to the centimetre. On wheels, you have nothing, other than the occasional outstretched foot, to confirm your not heading straight into a wall, but I have got there and with growing confidence, although not perfect, I could manage.
A couple of months ago, I found myself no longer going through doors, but rather careering into the door frames or removing chunks from my knuckles as I once more dragged them over the ornately cut wood that forms all our doorways and doors. At first, I thought that it might just be the way that dizziness was transferring itself, as in, I was still going off course, just on wheels instead of feet. But even when there was no dizziness, I was finding myself not just crashing into the doorframe of the bathroom door, but on occasion actually facing the kitchen one instead. My learnt routes, my practised and known sense of direction, was even going off course, I could no longer pretend that something wasn’t going wrong.
Despite the fact our home was built by the Victorians, like all modern homes, ours is never truly dark. Thanks to badly placed light switches, there is no way to make it from the bedroom to the other side any way other than in the dark, but the hallway is lit by two glowing LED’s, supplying more than enough light to see by. So I gave up practising my tricks and started just taking care instead. Yet, all it took was the slightest dip in concentration and those well travelled and learned journeys, once again failing, just as some daytime travels are now too. No matter where I try to go now, what I try to do, no matter how well learnt or how long I may have been doing something, if there is the slightest distraction, they fail. Which for me, is a huge problem, as when you have a poor memory, you spend almost your entire life, repeating things in your brain, while relying on both muscle memory and life memory, to mean you actually go to the right room, and return with the right thing. At times, it feels as though the control of my body has been taken over by some sort of alien, with a warped sense of humour, who’s acting as my puppet master. Right now, at least, one journey in a given day and one in thirty actions, that should be done without out thought, now go wrong at some point. How long before those odds shorten? I didn’t realise that my future was going to be such fun, that everything I do, was going to be a lottery.
Right now, it’s just annoying. It’s one of those things that you don’t expect, like trying to stand up, to find you only have one leg. When I was told that my life with MS was going to be varied, I didn’t quite grasp what they meant by that, I didn’t understand that it meant by the minute, not by the month. As my life is now so limited, well the chance of this causing me any harm is low. It’s not like I use sharp instruments or live on a boat, both my environment and my lifestyle dictate that this is just another annoyance to add to the list of them. At least, this one has a sense of humour, who knows what will come next, but personally, I think it’s going to be hard, to come up with something better than sticking my toothbrush up my nose.
Please read my blog from 2 years ago today – 05/04/2014 – A fact or a lie
Sometimes it is easy to sit and make excuses to myself as to why I can’t do something, or why something isn’t important, both I believe are the two things that most chronically ill people do without even knowing it. At times it is the easiest thing to do, to just find an excuse to brush aside what we don’t want to do, we all do it, you, me, everyone, being ill or not doesn’t make any difference when it comes to telling ourselves the truth, we are all really bad at it. It is a million times easier to tell the truth to someone else, but when it comes to ourselves, somehow it is suddenly all right to tell great big lies, every now and then, or even all the time. I know and freely admit that when I was first diagnosed I started telling myself that I couldn’t do things that…..