A search for dignity

Over the weekend my arms haven’t been too bad, a lot of tingles and some mild spasms but I managed not to drop anything or to loose control over them. I was reminded on Saturday night of a sensation I have never written about nor has anyone asked me about it, but I am as sure about this as I am that MS causes spasms, that I am not alone. If I am not doing anything for example watching TV or lying in bed, I frequently loose the true location of my limbs. To explain this one is easy for once, I know I have lain down and both my arms are a couple of inches from my body, within a couple of minutes it feels as though they have moved and are now are a couple of inches off the bed surface and my hand is on my body. The nerves are sending me misinformation as to it’s location and it is amazingly realistic, the longer I remain motionless the more limbs join in on the game. No matter how much I correct and confirm to myself that I haven’t moved them, the more I feel they are nowhere near where I left them, it is really odd. So far it has only ever happened when I am motionless, but I can’t help wondering if anyone out there has ever found they aren’t getting true spacial information about their bodies when they are totally awake and in the midst of daily life. I know that I miss gauge the distance of things I’m not actually looking at properly, knocking things over or banging into them with my hands, but the idea of it being worse than that is clearly possible and clearly not something that works when trying to live a normal life. I have just realised that telling someone that your hands and feet aren’t where you left them, is actually quite funny and makes me sound amazingly stupid as well, how can you loose your limbs which are attached to you. I suppose that is one of the thing about living with a mixed up nervous system, it has learned to give out misinformation whenever it wants to and there is nothing you can do about it.

My biggest problem over the weekend has actually been my bowels again, I can’t remember when I last actually went to the loo, but I do know it was before I last went to the hospital, so I took some laxatives on Friday with a very small result on Saturday and a further tiny quantity on Sunday. Over both days I have been having the spasms from hell in my gut, often stopping my and making it hard to move until it lets go. Last night I tried to go to the loo again as there was a mild need to, but I at first couldn’t go, so I did what I have been told not to and strained. If I hadn’t had a endoscopy and a battery of other tests done a few weeks ago, I would now be worrying as what I passed was like spaghetti and to the right hand side of my bowel it felt as though there is a tennis ball sat in there stopping me from going. More laxatives last night and nothing is happening at all, with some straining it is the same as last night. So I am gong to take a larger dose tonight and if nothing has changed by tomorrow morning I will have to call the doctor as endoscope or not this is not normal for me in any way what so ever. This whole issue is really getting to me now, all those test and no explanation of what is happening other than it’s my MS, well hello, there is no way this is caused by MS.

There are so many problems with being housebound that aren’t in your mind when it first becomes clear that you can’t be out there in the outside world independently. Once you are locked into your home unable to do much you then find yourself sat all the time, your weight rises due to your lack of mobility and then the bowel and bladder issues join in. Anyone regardless of the underlying illness will probably at some time have all these issues. Internal health isn’t just about what you eat and drink, the less exercise you take the slower your guts will work, add on to that the drugs that they fill us with and the problems are clear. Whether or not you become housebound by age or health, these issues occur and are common to all of us, so you would think that someone out there would be working on ways of managing it, without having nurses to apply suppositories or supplying incontinence pads which ever are required. I can’t help but think there has to be a better way of managing it all, right now I don’t know what that is, but there must be something. You wouldn’t believe how something that should be simple like going to the loo can impact on your life, but it usually is the small things that just won’t behave that eat away at your day and your life and most of all your dignity.