Changes

One day on and I still don’t remember what I was so desperate to write about yesterday, but last night I went through the identical strange sensations apart from the wriggly thing, that didn’t happen. I have to admit I did find myself wondering if I had some sort of worm, clearly I have watched to many of those documentaries about the strange things people have inside them. I suppose we all think strange thought when strange things happen.

I have been tracking the pain, numbness and spasms in both my hands now for a few weeks as I have mentioned recently there have been a lot more pain and numbness going on. I am in no doubt that they are getting worse over all, not just in their peaks but over a whole day there is a clear progression showing that they are really getting worse. I have noticed recently as well that they are showing more and more signs of what I suppose is withering, they now have that look of being thin and weak, especially from the elbow down. I wear two layers of clothing over them, so it is really only when I have my shower that I really get the chance to see them, the other day I actually stopped and stared, as it hadn’t registered before. I have for many months been able to see the same had happened to my lower legs, but neither I suppose were unexpected. It isn’t just the fact they aren’t used a lot any longer but it is also part of MS it withers muscles. It’s kind of strange though to see, as I have ample fat around the trunk of my body and these rather strange thin dangle things by my side. The same fat cover is still clear on my thighs and upper arms, but the actual muscle tone and bulk is getting less as well. It is now easy to hold onto the fat layer as though it is no longer attached to the muscle below.

Looking at myself these days in a mirror isn’t something I do a lot of as I have lost totally the person who was there just 10 years ago, well to be honest just 5 yrs ago. Being housebound has destroyed how I look and it is rather hard to accept that no matter what I do, nothing looks any better. Logic alone should tell you that no exercise means no muscle tone, but I have always been a really active person, a bluebottle and I were well matched according to many people that I knew, now it feels more like a slug. All of our bodies age and we can’t stop that, but illness speeds all of that up, there are no real exercises I can do, even the simplest cause more pain and fatigue, and it’s hard to make yourself do something that might be good for you long term, but bad at that second. All your life you have worked on the logical system learned in early childhood, that if it causes pain, it is something you shouldn’t do, I am inclined to continue using that logic. I saw the MS physiotherapists about 4 yrs ago and she said there was nothing they can do to help me any longer, part of me wants to prove them wrong and part of me says they should know what they are talking about.

I know from seeing others who’s illness has progressed further than mine, that the impact on how I look has only just begun. I have seen so many frail and withered people who at the time I put ages to, that I know see was probably totally wrong. It’s just another thing that MS steals from our lives, I could make jokes and say well at least my memory may fail me bad enough that I might forget seeing it at all, or brush it off with well on the scale of things does it really matter. Ask anyone if this happened to them would they be comfortable with it, male or female I would expect the answer to be no. I do at times worry about the future and the fact that so much will be out of my control. Adam will eventually be responsible for my appearance, he will have to do silly things like dyeing my hair, which is very long, having to wash it and sort it the way I like it. He will have to know how to put on my make up when someone is coming to the house, to dress me and some how to do it all the way I like it. They may all be small things, but our appearance is a very personal and important for our own well being, and something I think will be incredibly difficult to hand over to another, even if that is someone I love and trust.

Body mass changes.

My right leg for a change is the one requesting amputation but as they say a change is as good as a rest, well they are wrong, I would rather have the rest. lol. There are times that I am sure that all of us who live in the Chronic brackets just wish that we could flip a switch and turn off the whole thing, just bring a time of total peace so we can recharge and start again. It is wrong to think that sleeping brings refreshment, think back to when you have had any illness, you wake in the morning feeling just what you did the day before, those hours of sleep are nothing more than an interlude, a switch off and back on again, but unlike rebooting a PC the fault doesn’t right itself. There is though still a joy in sleeping, it’s hard to explain but when I go to bed so tired that I know that my head will touch that pillow and sleep will take me away, that it is a joy as it is a short interlude that I am by that point longing for. I have done it for years but at times I am tempted to switch of the alarm clock and just see how long I will actually sleep for, before my body brings me round, I have a feeling that it would be a case of when the meds ran out, rather than the need for sleep runs out.

I took a long shower this morning, something I haven’t done for a while as I was getting worried by weight increases than for any other. Over the years of being immobile I have slowly risen form 9st 10lbs to just under 15stone, no matter what I have done I just couldn’t loose any and being so close to what I knew was the weight limit of the fold down stool I have been having short showers, limiting the danger by limiting the time. When I went for my first visit to the hospital their scales match almost the same as mine, so I knew that it was me and not my scales. On each visit to see the specialist they have weighed me and each visit my weight has gone down. My last visit a couple of weeks ago put me at just over 14 stone, I weighed myself today and I was 13st 11lbs, clearly a long way off the seat limit and the red flag to me to be able to sit and enjoy the water. I have no idea how or why I am loosing weight and for now I really don’t care, the fact it is going and that’s all that matters, and the hospital don’t seem to be worried either. Who knows I might actually get down enough for some of the clothes filling my wardrobe on me rather than hangers.

That has been one of the mad and expensive things about being ill, my weight has been all over the place and believe me it is expensive having to by clothes over and over again. When I was on the gastric tube my dress size dropped to a UK size 6 I weighed just 7st 2lbs and once on the tube it rose quickly and I was happy to settle at a size 10, through out that 3 year period I found my answer in jumper dresses, the are ribbed and look too small to put on but stretch well, and suede pirate boots covered the matchstick legs. It is often the simple things that make life bearable and finding ways round you mad body looking madder than it feels, for a woman is a big thing. Since I stopped going out I have warn a range of nightdresses, pajamas and housecoats, all loose and all easy to get on and off. None of the clothes I had were of any use, not one would stretch that much, so going to the hospital was difficult but I discovered that my pajamas with an over shirt and coat looked like a trouser suit, and no one asked why I was still in my pajamas, so I guess I got away with it. No magic wands but with a little thought, there are ways that you can give a close to normal appearance with a little thought. one thing is to never throw away, that was my mistake, all my larger clothes went in the bin, I didn’t allow for the weight ever going on again as it has. Who knows if the weight keeps falling I may well actually be able to get dressed for a future appointment.