I found myself lying on the floor, once more sitting on the carpet and wondering how on earth I had landed up where I haven’t been now for about five or six months. Falling has never been a huge part of my PRMS and when I do, well I never seem to really hurt myself, on the odd occasion there has been a cut or a bruise, but yesterday wasn’t going to leave a single mark on me, as I had done the thing I do the most, bounced off something and then more slid onto rather than fell onto the actual floor. I had just woken up and dressed from my afternoon nap and as I tried to put my dressing gown on it happened, my balance went and between bouncing off the door then the wall, landed up sitting with my back against it. Being in the bedroom meant that getting up was actually easy, like most bedrooms you’re never that far from the bed so all I had to do was shuffle over to it and pull myself up. My biggest fear of falling for a long time now is that of falling in the hallway, it is the one place in the entire house where getting up would be incredibly difficult, as I already know that crawling is impossible as my arms just won’t take my weight and simply collapse bringing my face closer to the floor than anyone wants their face to be. Getting stuck on the floor is something I normally do just because I am being stupid and trying to do something that I shouldn’t be, like chasing something I have dropped and has disappeared underneath one of the free standing units in the house, or fetching something from the back of a cupboard. I am more than aware that my legs on their own have no longer got the strength to lift me upright and if you count the number of times in an average week that you have to kneel, you will start to see just how big a problem it really is, add in the number of things that require you crouch and the picture gets even clearer. None of us think about any of these actions, but they suddenly become huge and daunting once you have found yourself stranded with no way back to being upright.

Muscle wasting isn’t just something that is happening to my legs, as I said I can no longer crawl, but it is the other things that we use our arms for that are making themselves more and more. For the last few months, I have been finding that I am getting more and more pain in my left shoulder and arm, I couldn’t work it out for a long time as I was doing nothing different than I always did. I am sitting at the same desk, on the same chair as I have done now for 10 years, our settee is the same one we bought 9 years ago and our bed, with the addition of new mattresses and toppers the same bed we have had for 15 years, nothing had changed, so it had to be me. I set to checking my posture where ever I was, working on staying upright, not letting myself slouch in any way. It was sat here that I discovered was the main source of the pain, but I honestly wasn’t doing anything different than I have ever done, but I found myself slouching to the left all the time, my muscles couldn’t hold me up right, they simply didn’t have the strength to hold me for more than a few minutes and whether I checked the slouch or pain brought my attention to it, I found it hard to pull myself straight again or to hold it. At it’s worst the pain runs from my wrist right the way up to my neck and down to my waist covering the left side of my back, but the worst pain is always in my shoulder. I have spent weeks doing everything I could think of to change how I am sitting and how I lean on the desk, but it has all failed, so I set out to test myself and see if there could be something else behind it. What I have discovered is clear, my left arm is even weaker than I thought, not just when it comes to lifting things, but also in it’s pulling strength, my muscles are quite simply not equally in any way at all. The reason for the pain is clear, I am sloping over to my left side and not out of simple bad posture, but because the muscles don’t hold me any longer as they used to.

I had spotted a couple of time in the mirror that my left shoulder was sitting lower than the right, but I hadn’t actually paid any attention to it other than to striaghten myself up and stop looking. I know that throughout my blog I have noted that my left side is very much the weaker one when it comes to the effects of both my PRMS and Fibro, but I hadn’t actually thought beyond the spasm and other sensations that are all part and parcel of both condtions. It hadn’t really occured to me that the muscles within my back were also getting weaker and that they too were suffuring the effects, once more my mind was centered on my limbs and I was ignoring the rest of me. Even the arrival of the hugs didn’t make me think about the on going results of spasms in my intercostal muscles, or the simple idea that they too could be withering. I did about a year ago buy a brace that was supposed to pull your shoulders into the correct possition as I was then already starting to feel pain when sitting here, but it was difficult to put on and it didn’t make the difference I was looking for, not surprisingly as I was trying to correct the wrong thing. At best it did make my shoulder pull back but it was making me use my right side to pull my left into the correct possition, not helping to straighten the leftside out as I had hoped.

In the last year, that pain has grown to the point that I now feel it all the time regardless of where I am or how I am sitting or lying. In the evenings I have discovered that if I sit with my left arm clamped between a cushion and the arm of the settee, that I can pull the muscles and shoulder joint outwards, which seems to help, but as soon as I release it, it returns to it’s now normal state of painful. As the muscles have grown weaker and weaker, my posture has slipped into the only position left to it, some what crumpled and sagging, something which should have pointed to the truth but I ignored it. I guess we all ignore the obvious especially when we have a theory in our head that makes it seem impossilbe. I have now for 12 years had a twitch in my back around the level of my waist, it means that unless I have my back pressed into something, like the back of my chair, my upper body is always on the move, not dramtically but clear to see. I had it in my head that that constant movement would mean that my back muscles were being used all the time and although not a weight bareing action, I though it should keep it stronger than just being still would. It appears that it was an incorrect theory.

The only good thing I can say about muscle wasting is that it is a slow process, not on of those overnight shockers, but one that sneaks up on you and then declares itself in some way. I now just have to accept that declaration and work with it, I don’t have the answer right now, other than to keep trying to correct it, but that is the real problem, as unlike a healthy persons muscles, mine can’t be rebuilt and I don’t have the energy or strength to do any of the possible excercises for strengthing my core or muscle mass, like so much else it is a matter of adapting and trying to limit the pain as much as possible. The more fatuged I get the worse it gets and again as fatuge is now just part of my life, I guess that this pain is now equally part of it to.

Read my blog from 2 years ago today – 18/04/13 – Independent to dependent > http://bit.ly/Z5nHHZ

When the phone rang at lunchtime yesterday I knew before I answered it that all I was going to hear was Adam in a tizz, convinced that I would have fallen over a dozen times and that he was going to have to come home and look after me. It actually went as far a him talking himself into having to give up work and staying at home every day just to keep an eye on me. When he was finished, I then told him that I was…….