We all know the major things that make our lives difficult. The pain that takes away our daily pleasures, and the fatigue, that stops us doing all the things, that other people do. The spasms that cripple our legs, or the muscle weakness that stops us from walking. All the things that we list every time we go to see our doctors, but it isn’t always the major things that make our life difficult. Sometimes, I think we become blinded by them. We forget about those things that have become everyday, the things that happen so often, that we dismiss them as unimportant. It’s now nine years since I lost complete use of my left arm and eight since it returned to a state I call functional. I am so used to it, that I pay no attention to the problems that it causes me, but I have begun to wonder, if, I did deal with those tiny things, might it just make life easier in general.

The death of my arm was the initial event, that led to my being housebound. When you can’t manage to walk any distance and are reliant on a manual wheelchair, not having one arm, means not being able to go anywhere. At first I did as everyone does in that situation, I wore a splint. Splints don’t make a dead hand work, it just stops it from flopping around and being hurt for no reason. I was lucky, I could work from home and that was exactly what I did. Over the months, my arms slowly returned, I could remove my splint, but it was never the way it once was. There was and is, still a general weakness and my grip is less than a child could manage, but I cope. Well, that is at least what I tell myself. When I leaned on my wrist the other day, in an attempt to push myself up off the bed, it collapsed, nothing new there, but annoying. For some reason, it set me thinking, just how many times each day, does that arm cause me problems?

It is about four months now since I was forced into returning to life in my wheelchair. My legs have stopped me from walking even the pitiful distance such as the length of our living room. I have often found myself feeling almost stranded at the end of the day, as both my arms become too weak to move at any speed. In fact, just managing that initial shove into motion, is often a daunting prospect. I had been blaming it all on general fatigue, occasionally, on muscle fatigue, not just of one arm, but both. My thinking about my left arm made me notice that part of my problem, wasn’t just the major muscles, but was linked directly to my left hand. My left arm is causing me to work twice as hard, for one simple reason, my left hand, isn’t up to gripping tightly the push ring on the wheel of my chair. When I try to push, my hand is slipping. A lot of the time, I am compensating by pushing with my right arm, and simply guiding with my left, pushing against the wheel, so that I go on a straight line. It may sound like a tiny thing, the sort of thing as I say, that we simply brush off because it’s the way it is. But does it have to be?

A few minutes thought, and ten minutes on Ebay and I have the solution. Now on its way in the post are some wonderful little self-adhesive strips, intended for either stopping clothes slip of hangers, or to put on a shoulder bag handle to stop it falling off your shoulder. In my case, they will go on the underside of the push wheel, and I will no longer have to feel my hand sliding along the metal, doing nothing of use for anyone. The hope line is as follows, less wasted effort, less wasted energy, less exertion being used by both arms and, therefore, less pain, and a general improvement in my fatigue. If I can use my hand correctly, it might also reduce the spasms I get within it and the number of times that my fingers slip out of their joint sockets. It might also mean that the right muscles will be used regularly and will improve their strength. Hopefully, in time, their strengthening will mean they will stop collapsing under my weight. What I have bought, is a tiny thing, it cost me just £11, but it could change a lot.

I can’t help thinking that if we all didn’t just accept that our lives have to be this way, if we searched for the root of those small problems, that we could all make those much-needed tiny changes, that could change our lives in much bigger ways. The longer that we are ill, the more we accept. Accepting our condition is one thing, but accepting what it does to us, is a totally different thing. We are so determined to manage, so adamant to show everyone that we can cope with the world as it is, that we forget, it doesn’t have to be that way, that there are ways of making the able-bodied world work for us. I have reached the point where I have had to accept making changes, installing grab rails and so on, but they are the obvious things, they are the things that any disabled or able-bodied person would know about. I’m sure that there are many tiny things in our world, that all it takes is thought, to fix, rather than accepting. I have hopefully just fixed one, but I am sure, that there are a lot more that I can equally change if I just stop accepting those apparently small irritations. So think about it.

Please read my blog from 2 years ago today – 09/03/2014 – Tough love or life

I woke feeling like death this morning, I haven’t the slightest idea what was up but I was ever so glad that I had both anti-nausea tablets and painkillers to hand. I felt so sick and I there was terrible pain in my right side in the lower section of my ribs, most people would probably have just gone back to bed, but because I could treat it, I could stay up. That was 3 hours ago and although the pain is under control I am beginning to feel sick again. I doubt there is anything really wrong…….