Crippling Purpose

I slept well last night, I know that because I woke up able to get out of bed without too much of a struggle. I wish I knew what causes that terrible stiffness that settles in over night, but not waking feeling as though there isn’t a joint or muscle in my body that can actually most, was great. I have noticed that stiffness settles in quickly these days, I don’t get it during the day when I am sat here typing as I suppose I don’t stay totally still, other parts of you shift about as your fingers do the work, but in the evening when I am sat on the settee, I freeze up. As little as an hour of sitting watching TV and standing is a struggle as are the first few steps. Walking across your living room like a centenarian isn’t exactly the image that I want my husband to have of me, but he sees it daily. My mobility varies all the way through the day but it is the evenings that I always seem to be the worst. My legs are heavy and stiff, they insist on trying to move without bending and my left foot always drags just a little, but often constantly. I have also noticed that if my stress levels rise as they do when going somewhere like a hospital, everything falls apart, but most noticeably if I am asked to walk or talk. All understandable but why I turn into a total cripple every night, is just annoying, OK I’m tired, but that varies, the level of immobility doesn’t and all I can blame it on, is my settee.

With so many different sites on-line to keep going I seem once again to have put myself to the limit of what I have time and energy to do. It is almost as though I’m not happy unless I am being stretched to my limit all the time. I know that that is something that I have always been good at when it came to any job I had, but you would think that now I am free of such things that I would slow down and just relax a bit, but I really can’t. I guess it is all part of a need that we all have to feel useful, there is so little that I can do that finding a way to pass on my life experiences and to amuse others with pictures and so on, has given me a purpose, something that I would recommend to anyone who is no longer working whether that is because of illness or through retirement. In many ways my day is spent on what some would call my ‘hobby’, sorry I hate that word. To me a hobby is something you dabble at, not something that you commit time and real effort to. I used to do a lot of handy-crafts many that people over the years had suggested I did to earn money, which was something I just didn’t want to do at the time, if I had the dexterity and eyesight now I would, but they weren’t hobbies, I did everything to the highest level I could. I have seen handy work from so many others that is totally beautiful and above the level of dabbling, the word hobby would be an insult.

Having a feeling of a purpose seems to be something really important to the human psyche, and I totally believe that without it we all fade quickly. There is though something that I think is missed when it comes to all the therapy groups and classes that I have seen that are available to OAPS and the ill, and it is an important thing. It has to be something the person actually enjoys doing and wants to do! Years ago I was unlucky enough to spend a couple of months in hospital and they insisted that I had a go at weaving the top of a small stool in gaudy colours and cheep looking string. I hated it and the therapy angle was lost as that hour each day didn’t help, it made me angry and depressed at that thought I had to do it. Even recently I saw a program were OAP’s were collected up by bus taken to a Church hall and sat a desks doing really bad handy craft and most looked as miserable as sin. Those that looked happy were the ones that were chatting loudly and producing little at all, for them it was company, for the rest I could seen nothing positive at all, to me it showed do-gooders doing no good at all, but still patting themselves on their backs.

Finding purpose is so individual, there isn’t a book filled with suggestions for a very good reason, for most people, not one of the suggestions would fit totally their requirements. Having said that though I really think it is an area that if more work was put into it, it would save the NHS and social services a fortune. Having a purpose hasn’t made the pain or anything else go away, but it has stopped me slipping into a depressive state and vegetating with nothing but what is wrong with me to think about. In turn that has meant that I don’t need drugs and visits to a psychologist and all the costs attached to that.

My bowel is damaging my leg

I put a lot of thought yesterday into the events of the last few days and I think I am at least making more sense of what is happening with my left leg. One of the problem that I have increasingly notice over the coarse of this year is that my left foot has dropped more than it was, say last year. Foot drop is a common symptom of MS, it is a slow process that means that the muscles don’t hold the foot correctly in a normal position, it is still really mild compared to many I have seen but I do know that it has worsened. I can no longer take a single step correctly. As I start the lifting of my foot it start to twist so that the outer side is not closer but slightly pointing toward the floor, that sound terrible but it isn’t, it is just difficult to describe if you haven’t seen it before. It is probably better to say that the left side of my foot is tilted towards the floor and instead of taking as you would, a straight step there is now a sort of flip action to lift my foot so I can then put it to the ground again. That of course means that my weight and style of stride is different, putting pressure on my joint and muscles in a different way. This clearly is going to aggravate the wasted muscles and hurt those that are no normally used, result pain. Two reasons which on there own, would explain why my leg is hurting, add then the normal MS spasms and there is more than enough reasons. I do admit that it worries me a little as I know it is just slowly doing more and more damage but once a foot has dropped there is no getting it back. I used to spend hours flexing and forcing it in to the right position in the hope that it would help, but nothing changed.

The muscle damage caused by MS isn’t the same as just by not using it, when the correct nerve command isn’t getting there, it isn’t getting there. That is a cold hard fact and all the exerciser in the world will do nothing other than cause even more muscle fatigue and that makes everything worse. As I said yesterday I try not to use my stick as I usually land up hurting my shoulder, but I also land up encouraging muscle wastage. I can also see with ease, how using mobility aids also causes problems that were not there without the aid, think about it.

There is another thing though that is making my leg worse and is probably at the route of the whole thing, incontinence. Six months ago I probably had to get off this seat ten times in a day, and those spells on my feet were very limited, straight to the kitchen and back to my chair. Now getting a drink also involves going to the loo at least once, but normally twice to clean myself, every journey is more than double the length it was before and means more painful time on my feet. I of course don’t only mess myself when standing I can just be sat here and know that it has happened again and there are even more visits to the loo. Ever since my bowel control has been causing problems I have also had increased problems walking and more pain in my legs, it fits together, which OK is good to have put together something that helps me to understand but it doesn’t do anything to make me feel better or have less pain.

I had trouble sleeping again last night, usually I go to sleep in seconds but I lay there for about 20 mins and couldn’t sleep because of my leg and I went and got the extra tablet, I could see no point of just getting more tired than I was already. The result though is once again I haven’t had as much sleep as I needed and I don’t feel great again this morning. When I was really tired again last night I had a problem getting out of bed, I guess it is just like any problem that is part of MS, but this morning it wasn’t easy, but I also didn’t struggle as much, that one is a wait and see I suppose. I have also resigned myself, in my mind only, to the possibility that one day I will need a hoist of some sort to help me, but as I said I have only planted the seed, it is a long way off the having it brought in, and miles away from asking officially for help. All of these things are a step by step and it is actually really hard and painful to take those steps in your mind, just as it is for my physically to walk, the comparison is clear.