I woke this morning with the alarm sounding rather than pain anywhere, I’m not saying that the pain has gone, but, at least, it is at the level I normally live with rather than ripping me into shreds. I am sure that it is just what you would call normal, but I worry that days like yesterday are a window into my future, I know that the doctors would give me stronger painkillers, but that somehow doesn’t make it seem any brighter, just knowing that my body would ever have to be producing that level of pain somehow doesn’t seem to lie easy on me. I know it’s pointless worrying, or even thinking about something that I won’t be aware of, but it’s my body and me that will be living in the knowledge of reality. It is so often the fear of the future that gets to you, even when you know that there will be ways round thing, ways of making life bearable and even enjoyable, somehow it still sits there in your mind chipping away, telling you this is your future. I can tell myself a million times, just look how well you have managed to date, you will manage all that is ahead as well, but there is always that doubt, that time bit that says “what if”, that, I suppose simply makes me human.
I don’t often think too deeply about the future, nor as you may have noticed do I write about it that much, although there is one post that covers the furthest future I will ever see. I used to like everyone else sit and dream about what would lie ahead, what Adam and I would do together, where we might live and what jobs we might have, but when your health has gone those dreams go to. It’s so wrong that once your financial future is taken away, almost all your dreams go with it, money is an issue that shouldn’t rule our lives but does. We can’t move home, where we live is where we will stay, but over that is also all the holidays, the fun and everything else that any couple could have hoped for. Our future now, well who knows, it all hangs on what my MS does to me, how quickly it progresses and what it chooses to remove from not just me, but from us. That is the really hard thing about chronic illness, it isn’t just taking from me, it’s also taking from Adam. The next hardest well that has to be the not knowing, not knowing what will happen next, what part of me will fail, what will help will I need and when will it all happen.
I don’t think any of us like things to be unknown, but if we all really think about it, none of us know what the future will hold for us, we like to think we do, we like to have those plans and we like believing that they will all come true, but anything can happen and the truth is, every dream we have can be snatched away in a second. I don’t think there is one phase of my life that I didn’t see my future in a way that just never once happened, I wouldn’t be sat here, or even in Glasgow if almost any of them had. So now when I look to the future I try to look at it in a far more practical level because I know from my own example that the future has a habit of being what it wants, not what we want. I have learned to not try and look too far ahead now, to me, long term planning now is to look just to the end of this year, but I try to keep it even closer than that, just to today or maybe tomorrow.
When I was told I had MS I didn’t really understand just how changeable it really is, or how one day you might be able to walk but the next you might not. I saw it as a much more predictable process, that for example the ability to not walk would be a long slow change, with lots of time to adapt, but it doesn’t work that way at all. At this second I can still walk, badly yes but I can still actually get around, there is no guarantee that I will be able to this afternoon, it could vanish that quickly. So the future becomes the next few minutes, not the next few years if they exist at all. It is hard at first to get your head around it, but once you accept that is the way your life is, then you also start to look at everything else differently as well. It’s not hard to be happy for the next few minutes, then the next and so on, it’s not hard to see the wonder of life and the beauty of everything, when you might be seeing it for the last time. There is one last thing that makes life with a limited future easier to live with and it is a strange thing, the fact that I forget. I know it happens all the time, I live through pain I think I can’t deal with, only to find that the memory of it is something that becomes hazy and lost very quickly. Just as I remember when my left arm stopped working, I don’t really remember what it took to get it back or how I dealt with everyday life with just one hand, I just know I did it. The next few minutes could turn out to be the worst of my entire life, but first, I’m not sure if I actually remember what was the worst thing to date was, so is it the worst or not? But more than that, whatever happens, is temporary, it will happen and it will pass, just to fade as everything else has.
My future is now and that is honestly how I see and live my life, knowing that yesterday will fade and what lies ahead is out of my control, has focused me on the here and now, it is the only part of my life that I have clarity and any control over, so I’m going to make the best of it I possibly can.
Please read my blog from 2 years ago today – 28/03/12 – Body Check
Feet first, I apologise for walking around so much yesterday and I really did get the message form your soles. I understood quite clearly from the sharp fiery needles you communicated with, that I need to use you less. I also promise I will remember today to take my fluid meds and save you from over-stretched skin. Not wearing shoes I know is a mixed blessing for you but we have agreed before it is better to risk the odd cut rather than the pressure corns caused on our deformed toes by them. It’s OK toes I hadn’t forgotten your location, I know you think you are frequently forgotten but making the nails catch on my skin won’t help me bend to…..