I know it is totally my own fault and climbing onto my stool and the the worktop, were clearly something I shouldn’t have done on Monday, but my body is really making me pay for it. I don’t know why I was so determined to fix those stupid curtains, it’s not like it hadn’t already waited several months to be fixed, but I was just seeing red and was determined that one from the list of small jobs waiting to be done, was actually completed. It’s really hard to day in day out see all the things that if I were fit and healthy wouldn’t have waited more than a few hours to have been put right, taunting me as an unrequired reminder of what I can’t do. I also know which curtain it was that caused all the muscular screaming, it was the kitchen. I don’t think it was so much the kneeling on the perching stool, then standing and stepping forward onto the counter that did the damage, it was the coming back down. Getting up there was really easy as I had loads of things to hold onto and pull myself up, but getting down those same assets turn into obstetrical. I couldn’t step down backwardly, as not being able to see my feet made it really quite scary, I had to face out into the room to make the step out onto the stool, whilst twisting to get my shoulders past a wall cabinet, without banging myself off a section of wall. I don’t know why I was such a scaredy cat over that step out, as the stool was so well wedged in place that I had to really yank at it to remove it, but that step hurt my pelvic muscles and the stool pulling, the pain in my arm pits and upper arms. I have no doubt that that was the move that did the damage and ached all day yesterday and was actually worse when I woke this morning, on the good side, it has settled well, to a lower level of ache than before.

There is so much that I have slowly adapted to and learned that I just can’t do any longer, but I have one huge issue that I have never to date managed to find a way round, I am human. I would almost guarantee that every single person who lives with disability, will loose it occasionally and be like I was determined to do just one thing, one silly little thing that just has to be done. So OK may be I didn’t pick a particularity good item to set my sights on, if I am honest, I actually think it could have been any of them, but it was on the surface such a silly little thing, that it played on my mind more than some of the others. In may ways it is like being a child, looking at a world where there are all these things with a tag on them, that tag that says “one day”, one day when you are older or bigger, or all the other things you hear over and over again, my tags no longer say “one day” they now all read “NEVER”. Just like a child, I also look at those tags and most of the time accept them, but at times I look with this spark of mischief that says, just watch me. It doesn’t matter how well you adapt to living with your conditions, or being housebound, when it comes to the point when nearly everything in sight has that tag attached, well you do get wound up by it. I have adjusted to having to have things that I use frequently around me, rather than where I want them, hidden and tidy, I have adjusted to Adams style of housework rather than mine, to not being able to go past my front door as all that is out there are stairs, stairs I might get down one or two flights, but I wouldn’t get any further or back up again. I have adjusted to a life that I could never have imagined for myself, as I couldn’t have imagined anyone living as I do, but adjusting doesn’t mean liking.

I am so lucky that my reaction to all this isn’t depression, I can see how it so easily could be, it could also so easily turn into anger or a dozen other things, but it turns into something worse for me, frustration. I guess we all have our own personal nemesis when our lives and freedom have been slowly stripped from us, for me it has to be frustration, as it is one of the things almost guaranteed to make everything worse and there is absolutely no way of avoiding. The problem with frustration caused by the things that you can’t do, is it drives you to keep trying and the more you try and fail, the more the frustration grows, if you don’t spot it or catch it in time, slowly your muscles start to tighten and the tighter they get, the more spasm they trigger and the worse the pain gets. Like most of the things we do to ourselves the answer is to simply stop, relax and let calmness return before trying again, simple I know but as I said, I am human, I don’t always stop in time and then the whole things is set to explode. The explosion isn’t into anger, in fact I would say it’s more like the explosion of a detonator, it starts me off on a physical downwards slope and when the pain builds I can do even less and I get more frustrated by the whole thing. There is only one way to avoid it all and that is to do absolutely nothing, including looking anywhere other than the TV screen, mind you my eyesight would probably wind me up before too long. These days I know that I am spending more and more time motionless, with my eyes shut, relaxing groups of muscles, or even my entire body, trying to let go of it all and if I say so myself, I have become quite good at it, but no matter how practised I become, there is always the next thing that is just waiting to start it all again. Trust me, for a once highly active and creative person that I was, to find themselves trapped in this way, without the ability to do anything other than exist, is hard, so it’s not really surprising that occasionally we push it, what’s unfair is the price we have to pay, for just a few minutes of normality.

Sometime it is harder to just live in the normal world, to be surrounded by so much that you want to do, but can’t. I defy anyone to not get frustrated by it occasionally, to not kick out at it and say dame all of you, I am going to do it. No Monday didn’t get it out of my system, if only it were that easy, but I have learned the same lesson that the previous explosion taught me, “I can’t”, but I am telling you now, I will defy those taunting tags again and probably again, until they change from “Never” into “Sorry, but”.


Please read my blog from 2 years ago today – 12/11/12 – Alternative Joy

It is hard for me to put myself in the place of a carer but I have tried often when I have seen the pain in Adams eyes, as though just looking at me is causing him pain and the tears are just below the surface. I don’t remember what the conversation was the other evening that brought that look to……

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