It time to stop looking on the dark side, yes I know that many of you will have thought that, but the reality is it was more my own way of reassessing where I am and how things have changed. The conclusion, well they have changed, just as I knew they had and I am still as always adapting to them. I have to admit that reading the posts from two years ago have really shown me just how much I have slipped down the progression scale, but that is the truth of my illness there is only one direction. I know myself if I had been shown this through a time machine just 5 years ago, I wouldn’t have believed how quickly I would deteriorate. I guess we all go around with blinkers on, telling ourselves we are fine and that nothing that dramatic could possibly ever happen in our lifetime, far less just a handful of years. I suppose that is no different to any of the other facts in our lives we have no control over, like getting older. None of us, despite all the magic lotions we spread on our skin, or the exercise we do, have the slightest idea how we will look as we age. Chronic illness is actually amazingly similar, just as I don’t know how I will look in 5 years, how many new grey hairs I will have or how many new wrinkles will appear, I don’t know either what part of me will be affected the worst by my MS, or if I will be incredibly lucky and still be exactly as I am now, well I suppose we can all dream.
On the really plus side, the last few days of going over all the aspects of illness, has really helped me focus on the good things, yes I know they seem few and far between, but I am still holding on to each and every one of them. The biggest is the fact I have found a way of communicating with myself, I know that sounds odd but if you just let ideas run wild in your head, you forget most of them and concentrate too much on the others. Blogging was initially an exercise to see what happened when I let my thoughts loose on the web, which then took on a life of its own. Having somewhere that I can let everything out of my head, sort it and sift it daily, has stopped me sitting worrying and made me focus my energy on what is important, rather than what is demanding. It is quite honestly a really good painkiller and a really refreshing place to visit as it always leaves me feeling lighter and freer than I was when I opened the page without the slightest idea what I was going to say. Of all the things I have tried, I can honestly say this has been the most use in learning how to cope with what otherwise would be a hellish time in my life. I would recommend to anyone in my position to start writing today, even if it is just for yourself, write and keep writing until you can’t think of anything else to say and we all have something to say everyday even without think about it.
One of the things that I am more aware of since reading my old posts isn’t just how I now react more positively when things change, but I am also aware that I am becoming more and more accepting of my position. I suppose that isn’t really surprising on the surface as we all learn to adapt to where we are, but I feel personally it is more than just that, it is almost as though I have changed as a person. I know I wasn’t a particularly patient individual and I hated when things didn’t happen when I wanted them to, but I have become much calmer and far more accepting of what happens when it happens, rather than at my demand. It goes deeper, though, I am now totally accepting of a world and life that I have no control of what so ever. I can remember being frustrated when I could walk as fast as I thought I should be able to, now I just go at whatever speed happens and think nothing about it and that is just a small example. I have been changed totally, it is the feeling of calmness I have inside me that I feel the most, I don’t worry so much about anything from my health to money and whatever you want to add to that list. Suddenly I am a what will be, will be person, rather than I will make it happen my way come hell or high water, I don’t even worry when maybe I should. The other night I was lying in bed feeling terrible and just drifting off to sleep when I was snapped back into being totally awake by sudden terrible pain in my chest. My first thought was that I was having a heart attack, but I wasn’t scared by it in anyway I just lay there trying to work out logically what was causing the pain, my guess was that it was nothing more than several spasms in my intercostal muscles. I just lay there until the pain subsided and within minutes of that happening, I was asleep. It wasn’t until the next morning that I thought about it again, clearly I was fine, which made it even more likely that it was just a spasm, but what amazed me was that I was from the second it started to going to sleep, as calm as I am right now. That is the most recent example I can think of, but I know that I have felt this way now for several years and as time passes it seems to just keep growing, nothing seems to be able to get me any longer, I have become fearless and totally calm whatever happens.
I remember speaking years ago to someone who also had MS but was far further along the line than I was, they to told me about this calmness that settles on you and how you appreciate more and more what you can do, rather than what you can’t. It didn’t make sense to me at the time, but I now understand, even if I can only make a stab at telling you how it feels, I know I will have failed as until you find it yourself, I know just how hard it is to understand because there is nothing like it and nothing I can compare it to. I am now quite simply not just calm, but at peace with what is happening to me and what I still have to face in the future.
Please read my blog from 2 years ago today – 08/05/12 – Who cares for the carer?
Another week lies ahead, OK I know it is Tuesday, but it was a Bank Holiday yesterday in the UK, so Adam has headed off to his work as normal today, the start of my week alone. He works only a 10-minute walk from here which I think he likes for two reasons, first he actually normally likes what he does and secondly he know if he is needed he can be home quickly. I’m never sure what he thinks is going to happen to me that would need him to come home, but he calls every lunchtime just to check everything is OK. It is really sweet and loving of him and I do really appreciate it. In some ways we both know it is also a sort of game.
Adam has only been in the house twice when I have taken a bad fall, the first he slept through and didn’t know……