Oops, doesn’t cover it

I have four more days until normality returns. Adam has been on holiday for five days so far, and that means I have had five mornings, doing what I normally do, but with the background sound of snoring. God, can that man snore. I suppose that he had to have a flaw, well, no one is really totally perfect. All this week he has spent most of his time pushing me around in my wheelchair, that is, when he is awake. My right arm is still driving me up the wall, and for good measure, my left is now joining in, I suspect that I have hurt it trying to protect the other. I realised yesterday, that it isn’t all down to my MS, I suspect that I have torn the tendon in my elbow. Doctor Google diagnosed it for me, of course, as seeing a real doctor seems so petty over a sore arm, especially when I would first have to try and convince one to come to the house. I followed all the tests, apart from the x-ray, and tendonitis fits perfectly. I know that my wheelchair is playing a huge part, but I suspect that an even larger part of the damage has been done while using my grab rails. I have become rather reliant on them for getting out of my wheelchair, and to the point where I can turn around a put myself onto the loo. I know that maneuver sounds easy, and it would be, if, I didn’t have to along the way, remove all my lower garments. I frequently find myself being jerked all over the place as I fight to remove them, while not falling over. Elegance left a long time ago.

When your body works perfectly, you take so much for granted. We do things with total easy and without even realising how complex everything really is. We stand up, sit down, walk, fetch and carry, and not once do we even think about any of it. Something as simple as making yourself a cup of coffee, has so many tiny complex movements involved, even if we don’t realise it. Every time you do something, even as simple as stirring that coffee in the cup, you aren’t just stirring, you are changing your balance, compensating for the movement that your arm is making. Your body is moving and without good balance, that tiny action can land you on your backside on the floor. My favourite balance thrower is when I look straight down, my body just wants to follow my eye line. No movement, no action is simple. I have to hold onto things, grasp tightly and think about what I am doing. Often it still goes wrong, and there I am, pulling myself back into upright and yanking at all those muscles and tendons, not designed to take my weight. The chance of anyone who is disabled, not injuring themselves at least once a month, is slim, very, very slim. Most of the time it is nothing of note, just occasionally, it’s that bit more serious, a cut, a graze, a burn, or a strain. Get it really wrong and it’s unconscious with concussion, being disabled, is dangerous.

I thought that once I was in my wheelchair, all that the worst of the danger would somehow be gone. Well, it’s logical, isn’t it? I’m no longer on my feet, I’m sat squarely in my chair and safe. The reality is, little has changed, as all the real danger area’s, I find myself still having to stand. All the wheelchair does, is take me from one danger zone to another, incredibly safely. Which is something that I find rather ironic and actually rather funny. Admittedly, since I have been in my chair, there has been nothing worse than the damage to my arms and a collection of mysterious bruise, which appear and disappear with gross regularity. All this is yet another problem that no one ever tells you will be part of your life, once you are seriously chronically ill. Yes, my list of hidden issues is still growing, and I am totally sure that it will just keep doing so.

The reality of our lives will always be, disabled or able-bodied, we are never totally safe from damaging ourselves, but I find it really strange that the more cotton wool that I am wrapped in, the more damage I seem to be doing. I can only conclude one thing and that is that my health is getting worse, even if I’m not really aware of it. I know that it’s a strange way to gauge it, but when you are doing less and less, how else do you gauge these things? Clearly, I can still measure my speech, memory, breathing and so on, but all the other things, well they have been changed by my not knowing how to measure them any longer. I hope that sentence makes sense because reading it back, and trying to put myself in your position, I’m not sure it does. I sit here all day, I sit on the settee all evening, and I lie in my bed all night, where is the activity, the events to gauge anything by, other than the accidents that I have.

For a while now, I have been telling myself that accidents were inevitable when you don’t use your limbs, they are going to become weaker and less able. There has to be a large element of truth in that, but it doesn’t explain all of it. As I said, I don’t have major accidents, just more inability to carry out those everyday things, the things most of us don’t even think about. Life is getting more difficult, more confusing and further and further away from the life I once had, yet there is nothing to see, in some ways, my invisible illness is somehow slowly becoming invisible to me.


Please read my blog from 2 years ago today – 03/09/2014 – Explanation

It happened again last night, just before 8pm I suddenly started to feel really ill and again I pushed it and sat there until 9pm. Once again I began to start feeling nauseous, not that I believed that I was actually going to throw up, but I wasn’t that far from it. Feeling that dizzy and that not with it is rare, in fact, it hasn’t happened that badly now for several years, my early nights, naps……