Scenarios

I seem to be always finding excused in the last few days not to do anything, I’m not sure why but I was even having to push myself to write and that isn’t the normal feeling for me at all. The only thing I can think of is down to my left hand. As I have written about on several occasions I lost totally the use of my left arm and despite it returning it never came back fully. It has frequently had me believing that it was going again due to strange feelings in it or pain, well once again it is playing with me. In the last few days I have lost the odd finger for a while and then it returns and of course typing makes me very aware of, and it is hard not to keep waiting for something else to happen, expecting the whole thing to just vanish again. I suspect that anyone would be the same but I take these things personally now, it is almost as though I get upset when I have adapted everything around my MS and Fibro and it then starts doing rotten thing to me that I don’t deserve. That all sounds a little childish I know but well it feels like a child like battle constantly, a sort of ‘tit for tat’ situation. I do something that they don’t like and they make me pay for it, they do something I don’t like and I sulk.

The longer I am ill, the more it feel totally like being in a symbiotic relationship, and the more I think of it that way. I have never felt as though I am in a fight to stay well, as I know that is stupid and anyway the more you fight either MS or Fibro the harder they kickback, it is far more about getting a balance and then working with them, and it works. On the whole I have walked the tightrope for years and stayed on it reasonably well. When things start playing up, I start looking at everything I have been doing and look for what could possibly be the reason so I avoid repeat it. If I can’t find the reason, that is when I start worrying about the why and what next. My hand playing up is becoming a frequent occurrence which leads me to thinking that I have to so some reassessing, what I have been expecting from it, may well not be the reality and maybe I need to lower the bar a little. I don’t like doing that with anything because it becomes a notch on the downwards slope, something I always take seriously. I don’t suppose any of us like to lower the expectations of ourselves as it takes a chunk out of our self esteem, like it or not, we are all delicate psychologically, it would be great to just shrug your shoulders and move on again as though nothing has changed.

Progressive illnesses are difficult that way, as anyone with one will tell you I am sure. It isn’t like having for example a broken leg that when healed leaves you with a limp that will never go away, you learn how to deal with your limp and it is part of your life but it isn’t going to get worse, all your adjusting is done and it just becomes a fact. Everyday anything could change in my health, I don’t know what it will be, or what it will do, some symptom I have now could get worse or a new symptom could appear, there is constant adjusting, constant changes to my ability and constant reassessing of how to live with it. I can’t actually remember the last day that I didn’t feel something or notice something and found my mind starting the process just in case the worst happens. Living like that could destroy you very quickly, unless you find your way of dealing with it. I am now careful not to let my mind run to far, as I have learned that it is still more likely not to happen than happen. It is human nature, we all do it and we all need to do it, so if some idiot says to you don’t worry, hit them. No, OK it might make you feel better for a while, but I can’t recommend violence, but the skill is to not worry to far, always remember the balance that the worst case scenario rarely actually happens.

Progression is difficult but you and I can live with it as long as we don’t become paranoid about it. I might loose my left hand again, today, tomorrow or next year, or even never again, but I am aware of it and I am ready for it, but I don’t let myself worry about it beyond that. I set my balance and I have to keep to it not just so I don’t drive myself and those around my nuts but because that level of stress is just what MS and Fibro don’t need, they then have the excuse to run wild and then the worst case scenario is far more likely to happen.

Changes

There is something about being chronically ill that totally changes your values and views on life, your insight to what life is and how to live it. I know I am not the only person you has spotted this in themselves, as I have talked on Twitter to a few who also feel it. It isn’t that many years ago when I like many others worked every hour I could and I was a loyal and committed worker from myself employed days right through to my final job I gave my all. Everything in my life had to be done at a thousand miles an hour and nothing short of perfect was good enough. My appearance, my work, my home, my projected self, all had to be spot on, if it wasn’t then I had to work harder. I dreamed like many of winning the lottery and what it could bring to my life in the ways of luxury, not big houses and holidays and clothes, I’ve never been that type of person, but in cleaners and cooks to help make things even more perfect. I had like most become disconnected to what was really important and the world outside of a TV program that I watched whilst working on other things. I was reasonably average and settled into a grove where I had been put rather than had chosen. Over the years since I health impacted more then the odd flare, from when my MS turned progressive and I started loosing control of perfection, my entire views of everything started to change.

It isn’t as some might think just a case that I have suddenly realised how important health is, due to my flares I was well aware of that already, no it was more basic than that to begin with, I was suddenly aware of my own vulnerability to death. I knew like everyone that I wasn’t going to live for ever, but I had though that I would have had time to live before it happened. I did at first deny that MS was impacting me as I was superwoman and I was going to go on as before and more so. I wasn’t going to be beaten down and I wasn’t going to be those people I saw curled in a wheelchair. Denial is a dangerous place and it made adapting a harder process than it could have been. I did slowly start reassessing, not knowingly, I see it now that I gradually was changing and it wasn’t until quite recently that I realised just how much I had changed and what it was that was making me change.

It isn’t your own mortality that is the driver as I had thought, it is the process of getting there and how it will play out that changes your values, the time to live, not really, it is more how to live that time. When you know that you are slowly regardless of any medical intervention closing down, bit by bit your body is forgetting how to do things, it is supposed to do without help, then everything is changed. When you know that everyday of your life short or long is going to be spent in pain, then what is important changes. When you know that one day you will be trapped in a body that won’t even do the simple acts of living without help, the world changes. How does it change? Well, I have always been good at forgiving, some people have done things to me that others think I should want to see them dead for, I never felt that way, I feel it even less now, now I hope they have long good lives, not just forgiven, but forgiven with bells on. I no longer have to have things perfect, I see now perfect is impossible, I am happy they just are, if perfect that is a joyous thing to celebrate, but not vital to make them so.

Knowing that tomorrow I could wake and be unable to walk makes me no matter how painful glad at every step I take, when did you last just enjoy walking through your home? Each meal I eat without choking, each drink I take without drowning, each glass I lift to my lips by myself are all joys. Oh yes, there is a pain when you try and can’t. Every few minutes that I can sit without having to move again as tears are forming at the pain, they are joys, slipping quietly into sleep is a joy as is waking each day not sure how to get out of it, getting out is a joy. I no longer takes something amazing to happen or to be given a wonderful gift because everything is amazing and everything is a gift. I wasted so much of my life missing all of this, not realising that these are the important things, not fancy houses, not the wardrobe full of cloths or cars and holidays, not having your boss telling you, you did a good job, all nice, but not as wonderful as having the movement to do that job.

Everything changes and my dearest wish, would be for you to see these joys, but without all the trauma it has taken for me to find it.