I am suffering again this morning with not being able to find any way of sitting that is comfortable. It actually started at around 5 am this morning, I woke up totally aware from the first second that my left buttock was screaming out at me. It is the third morning this week that Adam has woken me, not intentionally but his timing of going to the loo has matched my pain levels, it isn’t him moving around that is waking me it is the light going on in the bathroom. I have never been good at sleeping though light, hence the fact that not just our bedroom, but every room has blackout curtains. Living in a Victorian tenement means that we have quarter lights above all the doors to let light into the hallway, unfortunately it also lets any light into the bedroom. I have now for a very long time been unable to sleep any other way than on my back, my lungs just won’t take me putting side way pressure on them for some reason, so my back is all that is left as even as I child I couldn’t bare lying on my front, leaving nowhere to hide from the light. I don’t know if you have ever tried to sleep when the part of you you are putting pressure on against the mattress, but believe me it isn’t easy. I can twist a bit so that I relieve the pressure but as I drift into sleep, well the twist fails and the pain starts to let rip again. I often find myself in this strange position, so tired that I don’t have the thought or ability to sit up and take a booster pill, yet unable to deal with the pain. Although I had slept already for nearly 9 hours, I still felt so tired that I just didn’t have the strength to think it through further, it’s a kind of mad place to be when you look back on it, as it doesn’t make much sense, mind you not much of what you do when half awake makes sense really. So here I am once more sitting on my blow up cushion, wriggling around, squeaking and creaking at every move, so much so that I have chased Adam of the settee and into bed. It would be bad enough if it were just my buttock that was causing pain, but as always there is pain right down my thigh and on into my shin and foot, it is one of those days when I toy with mad ideas of having it amputated just to get some peace.

The longer I live with a body that refuses to just be a body, the more I find that I come up with mad ways of just getting it to shut up, I have even wondered if I might actually be better off in a hammock than on a bed, but getting in and out might be more than a little amusing and painful. There has to be something that really does remove the pressure from your body, I have tried one of the new foam cushions that are supposed to mould themselves to your shape, personally I found it useless, it might have been my shape but it didn’t get rid of the pain. No matter what I can think of there are always two problems the main one gravity, until that’s removed there will always be downwards pressure, the other is a fact that all materials when pressure is applied becomes tense and therefore solid. I wonder if they would send me into space to study the effect of weightlessness on MS and Chronic pain???? Of course they wouldn’t, despite the fact I have dreamed of just going there since the first Star Trek I ever saw, or the fact I would be happy to try any tests they thought of that might help, you have to be fit and healthy to go there and they only do tests on creature who can’t answer back.

I know none of us ever thought the day would come when the one thing that is truly ours, actually becomes the one thing you wish you could get rid of, our bodies. From the day we really first understand what it means to be a woman or I suppose a man, we all work on being the best one we can, we work hard on sending out the image of ourselves we have in our minds, even though the reality and the imagination may not always be totally in line. All those hours spent making ourselves the best version we can be, we only work on the outside, not knowing that the inside is slowly destroying our future. It doesn’t matter how hared we work, how many promotions we achieve, or how happy our personal lives, our bodies are ticking away getting ready to destroy it all. There is one question that I have wondered about many times, especially these days when so many illnesses can be spotted in our genes and a forecast given long before any chance of them appearing. Would you if it had been possible to have a simple test run when you were just 18 or even at birth to show your entire medical future, would you have it done? Which is better, ticking along in blind hope that everything will be as you hope, or having a timetable, showing you just how long you really have to make all your dreams come true? I think it would be the hardest decision to ever make, it might sound nice knowing when the best time for your body to have children is, or the right diet for your body type, but to know that you will probably have cancer in your late 30’s, or that you are at going to develop something like MS or even worse MND, could you live with that?

Science may well offer these things in the future, but I personally think that just because we can, doesn’t always mean we should. To be told you will develop a horrid illness and it will take over everything, well just knowing could drive many in to actions that would never of happened without the knowledge. Yet I don’t think I could stand not knowing, the idea that my doctor had all those answers sitting in my file and I didn’t know what they were, would be too much. Already there are some who face this situation with certain forms of cancer, I don’t envy them at all. I guess it is a subject that will once possible, will take hours and hours of debate, but in the end it will come down to personal choice. What would yours be?