Just a litte control please

So many days just seem to bleed into another, nothing to define them from each other once you are no longer working. I woke this morning as I do quite often totally lost as to which day it was or if I needed to wake Adam so that he wasn’t late for work, then suddenly I knew it was Sunday. It is actually a really sad reason that made me aware of the day, I suddenly remembered that I watched “Strictly come Dancing” last night which meant today had to be Sunday. How did it happen that I am suddenly separating the days by what was on TV the night before, especially when that program is something as fluffy as “Strictly”? I have to admit it has been a weakness of mine from the start, I even remember the original from years ago when it wasn’t “Strictly” anything, other than black and white, it was just “Come Dancing” and a million miles from what it is now. I know what we watch on TV says a great deal about ourselves as people, without a doubt, TV is one of the area’s in life that locks me down clearly as a million miles away from the majority of people. I can’t stand ITV and haven’t watched it for over 12 years, other than the odd drama such “Poroit” or “Downton Abbey”, and I still actually remember one of my staff years ago astounded that I even watched “Strictly”, I did try to find out their reasoning, but all they would say was “they didn’t think it was the sort of thing I would watch”. Even though documentaries are always my favourite, but I do have a softer side that needs a little fluff every now and then, especially when covered in Lycra and moving with grace.

I had one of those strange days yesterday where after my nap I was totally unable to control my body temperature, there is nothing worse than patches all over your body feeling like they have ice pressed not just on but into my flesh, then two inches away it is on fire and sweating. There is no control over situations like that, if your entire body is hot, you remove clothes, all cold you add them, but how do you deal with something so out of control and alien to any human body I have ever heard of other than mine. To someone who has never gone through that kind of madness I guess there is little chance of explaining it in a way that makes any sense. The closest I can think of is to imagine you have fallen over and in that fall you have managed to hurt your knee, ankle, wrist and small areas here and there in a less pain but still there. No one doubts that you can feel pain in small areas with nothing in between, well this is similar just temperature not pain, and each area will feel different temperatures to different extremes. There is nothing that you can do about it, nothing that gives more comfort or way of evening things out and they also keep moving and appearing in other places. All you can do is to get on with it and hope that it will settle sooner rather than later.

So much of my life has become just waiting, I guess I have spent most of my adult life just waiting to see what will happen next. At first you are waiting months, then weeks then days, and eventually hours or just minutes, chronic illness is all about waiting and hoping. With the waiting comes learning and testing, before you start waiting again, add in the waiting that we all do as people and life starts to feel like one long wait. There isn’t a minute of my waking hours where I am not waiting, simply because there is nothing that I can do other than wait. Pain doesn’t always react to medication so you wait for it to go, you wait always for the next spasm, the breath that send indescribable pain through your lungs, you wait for the opportunity to stand and make it to the bathroom without loosing control of your bladder. You wait for that time when sleep will take it all away, or the time that will mean I have company again, the waiting never ends and there is always a maze of waiting interlinked with each other. In some ways it fills my life with the unknown and that can in it’s self be interesting, well although I wait I don’t actually know which wait will end first. I might go all day without one single spasm then have several all within seconds, then follow them with my feet starting to burn, you never know what is next to happen, but sorry I’d far rather not have that kind of excitement in my life. I guess the maze will keep growing and that there will never be a time when I will be allowed to stop waiting and to have freedom to just be me.

I suppose the fact that most of my conditions effects my entire body has always made it harder to deal with. I find my COPD actually the easiest to deal with as it clearly is centred on my lungs and the effects are felt there alone, but MS and Fibro can cause anything to happen in any part of the body it wants, so you never know what will happen next. To the outsider there is nothing to see, no one can tell if you are in pain unless it is extreme, or tell that your muscles are so fatigued that you aren’t sure how you will stand next time, as the strength just isn’t there. It’s an odd way to live I suppose but strangely you do become used to it, I would go as far as saying that you actually become content in your own little confused world, always adjusting and working your way through the next phase, then waiting again for the next to arrive.