There are always day when strange thoughts and feeling seem to take over, ill or not, I know that the human mind has a huge capacity to to invent and create things that should never have been there. I have always been that individual who reads far more into things than were ever intended, you know the person who would take a comment and run a million miles with it, re reading and re assessing what was behind it. So much so that I would worry about it well into the night, going over each word searching for what they meant by it or what I should have said in reply. I lost count how many times I worried because of some comment made by my boss trying to work out the meaning behind it, when in fact it had no meaning at all and was never mentioned again. I know there are a lot of people out there just like me, we seem to have been born with this need to keep the world on the happy side and are convinced that everything always came back to us, it was our fault when others didn’t understand, or our fault when something silly went wrong and it was our job to fix it all. Yesterday I noticed for the first time that I haven’t felt like that for a really long time.
It is difficult to explain to those who haven’t had their lives turned upside down, that as time goes on you start to find more and more pluses that actually make when brought together, the reasons for why they begin to feel happy in their new lives. I know without having to think to hard about it, that things actually began to improve for me when I was forced to stop going into the office daily, or actually at all, that many of the smaller symptoms started to disappear and some of the more major ones to lesson, those improvements even included learning to eat again and eventually getting rid of my feeding tube. I honestly think that we under estimate hugely the effects of living in our modern world actually put upon us. All of us need to earn a living to be part of the working world, we all want our own homes and to keep them decorated and clean, on top of that we have relationships and families, we pile on more and more and it just keeps piling up. For me, unpicking all those pile at first, brought about huge changes that were incredibly positive in it’s effects. Getting rid of the sleepless night, the brain never being allowed to be free of worry and problems, or the body never allowed to rest, changed everything. It wasn’t my choice to be housebound, but in the first two or three years I really did improve in my health, not just physically but mentally, my life became living again. As long as I kept everything on the level, simple and unchanging I remained as close to well as I had done in years. Most importantly I learned how to deal with even the minor stress of daily life, I didn’t get in a strop just because I couldn’t open a bottle of coke, I worked on it, not swore at it. Somewhere in that time I stopped blaming myself for the problems of the world and I became unstressed and happy with the way life was. I had found happiness in a place I never thought anyone could and why I continually tell people that being housebound is far from the worst thing that can happen to anyone. It is really like living in a different world as you are in a peaceful place, free from the things that actually were pulling you down, making your health worse than it really was.
I know for a fact that I my health improved, just as it did when I had the chemotherapy, step by step I got better, not well enough to go and try it all again and in honesty I didn’t want to take the risk. I was better, I had more energy, less pain and a feeling of living not existing, that last one was by far the most important. Everything stayed steady but the improvements came to an end, steady was good, steady was something I could accept but over the last few months I know without the slightest doubt that in the last year the downwards slope has returned. I can track it because it is so clear, this isn’t anything to do with the weather, as well it is all the time not just for a short while then settling again. I haven’t managed to write a single post with any fluidity for over 3 months, nothing is easy to do that requires my brain, even talking to people is getting harder and harder. Jake came here yesterday, usually we would spend a couple of hours just talking about rubbish, but yesterday he was here for less and 30 mins, he asked if I wanted him to go as I was clearly exhausted and he could see it without any doubt. Everything has become a struggle no matter how simple or everyday it would be to others, to me it is now really hard. If you don’t see it, well jump back several months in what I write and look for yourself, it’s all there.
I push myself everyday now just to write and I push for the number of words as that way, well that way at least I know how long I should be writing for and in what length of time. The time stretches and stretches, not long ago 5000 words was a quick 30 to 40 mins, so far today this has taken nearly 2 hours. I can’t write for many reasons, but the daftest and most annoying is my fingers no longer hit the keys they are supposed to and correcting my spelling would drive anyone mad. Less than a year ago I slept like anyone else with an hour long nap in the afternoon, now I sleep more than anything else, 13 hours plus is the norm. Talking now is madness and I know already that even Adam can find it to much to deal with as I just don’t make sense, the thought processes just don’t work and although writing is easier, well I am loosing that at times as well. I just forget what I am saying and what I have already said, reading back all the time to find I have already written what I was about to write is a common situation.
I have been so focused on my lungs, understandably I suppose, that I just haven’t been keep an eye on what my MS has been up to. In the last week or so I started to pay attention, but I wasn’t looking at the detail, just skimming over the obvious signs. I don’t know if it was Jake being here or something that has been trying to get me to think for a while but yesterday, well it woke me up and made me not just drop in the odd comment, but I had to pay attention and I had to really think about just what is happening. Even though I know my health has changed massively and the shift is clearly downwards, I still have that wonderful feeling of happiness, as despite what my body is doing I have managed to hold on to that peacefulness, the only pressure on me, now comes from me alone and I know that now without a doubt. 6000+ words, an over run I know but I have to start refocusing on what is happening, nearly 3 hours and very much time to move on.