Instinctive training

The first set of grab bars arrived yesterday afternoon. I have to say that I am rather pleased with them, even though they are just the suction cup type, they aren’t as unpleasing to the eye, as so many that I have seen. Of course, they still appear bulky, but they are at least firstly chrome coloured and have soft black hand grips centered on each bar. It wasn’t just there look that made me buy them, but the fact, that beside each suction cup, there is a tiny indicator which changes from green to red, should the suction not be tight enough. Like a lot of shower units, ours has two glass walls and which are, of course, the best position for hanging things like our body puffs and so on. We are therefore perfectly used to hearing the hooks giving way and clunking into the shower tray. The ease that suction cups give way had worried me from the first time I heard that such type of grab bars existed. The image of reaching out to use one, and crashing to the floor, with it in my hand, had entered my mind more than once. I’m hopeful that the indicators will mean this just won’t happen, but only time will tell.

It doesn’t matter how much you know you need these sort of adaptations to your home, it is actually a really big thing, to have to buy them and as I know, even harder to actually let yourself use them. I know that it took me several months, to actually fold down and sit on the shower stool for every shower. Even now, on a good day, I will stand for part of it if I can. No, this isn’t just about ego, it’s about so much more. In the case of having a shower, it has a great deal with how you shower. The routines and habits that you have learned over the year. Sitting down and cleaning yourself, isn’t as easy as you might think, especially when it comes to your back and well, obviously, the area’s you are sat on. Unless, you want to be constantly standing up and sitting down again, which is tiring and in itself dangerous, you have to break habits and wash there first, before sitting. No matter what you do, you still have to stand and rinse yourself once more while standing, to be sure all the soap has gone. At first, the seat seemed more a hindrance, than a help. Not only was sitting in the shower, just wrong, it did on top of all of this, hurt my ego. It’s a tool, and just like a walking stick or a wheelchair, you have to adapt to it and that always takes time. Without a doubt the bars will make showering safer, but, I will have to adapt, again, into using them.

Like most people, able-bodied or disabled, I have my own fair share of gizmo’s and gadgets that I have aquired, think they would make my life easier. Like most people, the majority of these wonder objects, have been packed away, never to be seen again. Aids are just the same. If they don’t work for you, if you don’t like them for whatever reason, you don’t use them. My first piece of advice I would give to anyone who has decided they need something to help them, is to look for not only the right aid, but the way that it looks. I know that we all need to look at price these days, but if the difference between the one that will just do the job, and the one that your like, is small, go for the one you like. That’s another one I have learned the hard way. It makes no sense what so ever, buying the one that will do, if you land up hating it and not using it. Yes, for £5 less each, I could have bought plain white grabs for the bathroom, but every time I entered the room, I would have cringed. I would have hated them so much, that I would have died everytime a visitor asked to use my toilet. It’s also a fact, that the more you hate something, the less likely it is that you will use it. I would also have seen the one thing I have fought hard against, a hospital. This is my home and it has to look just like that, a home. Trust me, a grab bar, isn’t a grab bar if you totally hate it. No, I don’t love them, but I don’t hate them either.

Years ago, even before I was diagnosed with Fibro or PRMS, I developed a habit that few noticed, I always walked close to walls. No, I wasn’t shy, I knew there was a problem with my balance. There was in my mind a safety in being a wall-hugger, I still am as it’s now an instinctive action, one I that developed after a few embarrassing falls. On bad days, I dreaded having to cross any open space, being outside and worse still having to cross a road, was a total nightmare. The doctors kept telling me I was fine, but I knew that I wasn’t. Back then, I had clear good days and bad one, unlike now when healthwise, it’s only bad. Back then, I also always had some notice, I felt it building and I knew pretty much, when I was safe or I wasn’t. It wasn’t my legs, they worked fine most of the time, and balance issue are quite different. As time passed, the good and the bad blurred and the walls and furniture developed a permanent magnetism for me. They became part of my instinctive life. I had learned their value and the safety they offered me.

It doesn’t matter how much of a problem your legs are, or even your balance, if you have spent your entire lives using them, that is still what you expect to be able to do. Doing something like standing up, or walking is an instinct. If you can take one step unaided, no matter how dangerous, you do it without thought. I know every single time I stand up, I am now in danger. That doesn’t mean that I have the brains to hold onto something that is there, just in case, something goes wrong. Because of the way my legs fail, I should. I should never move without holding onto something or being in my wheelchair. I know all that, but instinct is a truly hard thing to fight. That first or second step that I take can be the very step where my legs just vanish from under me. When they do, it’s too late to try and reach for the thing that’s there to save me. I’m already on my way to the floor, and too far from what was there to save me, to hold me up and allow me the time I need to recover. Yet still I take those steps, the steps I have to take, between one chair and another, and where are my hands, well not where they’re needed to save me. Instinct can only be broken by training, repeatedly training, the training I frequently forget to do.

Becoming disabled due to a progressive illness, isn’t like flicking a switch. It’s slow, so horribly slow. In my head, I can do anything, I am still the person I was when I was 20. Unfortunately, there isn’t a single part of me outside the tiny part of my brain that thinks, that is in fact, anything like what it was when I was 20, or as when I was 30 or 40, or even last week. My problem really is that tiny part of my brain. Someone could arrive here tomorrow and install, tastefully, it would have to be tasteful, ever aid I might ever need and the day after, I probably wouldn’t use a single one. Trust me, it would be exactly the same for you. We don’t think about what we are doing, we just do it. It isn’t until the second something goes wrong, that you even think about it. I long ago stopped counting how many times I have found myself on the floor. Not even the knowledge that once I am down there, and there is no way on this planet I can get back up again unaided, changes nothing. Nor does the number of bruises or scars I have received. Just like a child, I continue to act as though nothing has happened, not because I am stupid, nor my ego, but simply because I am human.


Please read my blog from 2 years ago today – 04/03/2014 – Unsolved problems

I didn’t sleep last night as well as I could have, I kept waking because of the pain in my back. It’s a pain that appears from time to time, I think because I always sleep flat on my back, not the position that most people seem to. Years ago I know I went to sleep on my side and once asleep I rolled to my back, but the bed also showed that I did move around a little, these it shows I don’t move a……