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.

Somethings just bug you.

Through out the day I receive comments on my daily post in this blog spot, those comments arrive through twitter and here on the blog. I occasionally find myself worrying when comments are slow to appear, as I then become unsure about the subject I have chosen for that day. What I am doing here is writing about my MS, I don’t actually know if anyone out there in this enormous world has the same, some or any of my symptoms, as I stopped a long time ago trying to find a site that actually gave descriptions rather than just bullet-points. Each day I write about me and I wait for the feedback, to find out if it is just me, or other out there don’t just understand, but are also going through the same things as I am. I am in many ways working in the dark, as much as those reading are looking for answers, so am I, I have just turned the process on it head, I write and I wait, rather than trawling pointlessly never finding what I am looking for.

When I started I thought I might be lucky enough to attract a handful of others with MS and some with Fibro, I never expected to also attract those who are able bodied and just want to understand, and an hugely increasing number of people with other conditions, which have cross over symptoms. This has had a wonderful consequence for me as I am now also learning, I am learning so much about other illnesses, and my belief that I have mentioned several times, that there may be many thing different and may different names, but the common point between illnesses is astronomical. It doesn’t matter how damage is done to your brain, what matters is the effects you have to live with and what you can do to make life better, I leave the doctors now to worry about the why. What ever reason brought you here, you are all welcome and feedback is also very, very welcome.

Today has been a rather relaxed Sunday, which is slightly unusual as I find often that Sundays are the days that my MS does it’s best to embrace me in front of Adam. He tells me I have nothing to be embraced about, he is my husband and he is here to clear up, fix, fetch and carry, he is here because he loves me and isn’t going anywhere. Logic has never in my experience had anything to do with emotions, he has reassured me so logic says I should stop worrying, emotion still make me embarrassed. When he is asleep or at work I don’t worry in the slightest at either or both, my bowel and bladder giving way when I stand up. There is no one here, so I simply deal with it and once cleaned up, I move on with my day. With Adam here, I worry every time before I stand up, I worry what might happen, often I try to stay still and wait until he has left the room himself, then I move. He just want to help, but whether I clean up or he does it for me, the result is the same, total embarrassment. Dignity is something we all prize, I have found over the years to accept that dignity is always left at the door of a Doctors surgery or Hospital, but loosing dignity in your own home is totally different. My home is my sanctuary were our moral rules are the only ones that exist, we are a partnership and care for each other. I know if the tables were turned I would have no problem sorting out things for Adam, but that logic doesn’t work with this emotion. Dignity is a basic human right and how ever a situation is handled, I still find that that right is violated and I can do nothing about it.

I know I wrote just a couple of days ago about dignity, but that is the way of things, they enter your head for a reason and they don’t go away. This week I have the continence nurse returning to see me. I am going to learn apparently how to use suppositories, I know that is why I am going over it again, being prodded and pocked at by Doctors is nothing knew, this invasive process in my own home is, and that just doesn’t feel right, a minor thing but it’s bugging me.