Adjust or sleep?

I didn’t want to get us this morning, I just wanted to switch the alarm off and go back to sleep, really not me. At first I wasn’t sure where that desire to switch off again was coming from. I wasn’t any more tired than any other day, I realised that I just didn’t want to have to deal with today. Nothing unusual or different is happening today, it is just a normal day, but part of my wanted to have nothing to do with it, to just slip back into sleep and avoid the day totally. When ever I write things like this I feel I have to back it up with saying no I am not depressed or anything like that as I realise now, that all I wanted was a day without constant pain and my only escape through out my illness, is sleep. Some times yes the pain does get wearing and it does just make me disappear into the bedroom to my only place of escape. Adam has heard me say it time after time that I have had enough at the end of my day, as I wonder off to bed, it isn’t just tiredness that takes me there. So waking this morning not wanting to wake up at all, isn’t that hard to understand, but it is just an unusual thing to feel.

The last few days with my hands playing up badly along with everything else that is normally there takes adjusting to. That may sound a little odd, but that is what you have to do, you can’t change it, or get rid of it, all you can do is adjust to it. It is like that for every thing, sometimes that adjustment takes longer than others, and I know that is down to the level of frustration rather than the levels of pain. Getting up meant that I was going to be sitting here forcing my hands that don’t want to do as they are told, to work flat out typing, sleeping would have meant I didn’t have to face it. As simple as that!

Once up I checked all yesterdays tweets and comments and you would think that a year on from when I started writing here, on other sites and on Twitter I would be used to the messages I get back from people and that I would no longer blush almost every time I get a compliment. You wouldn’t believe the boost I get just from a few people retweeting something I have posted, today I really needed them and I wasn’t disappointed, but I find nearly all of them to difficult to answer. It seems ironic that having my life destroyed by illness, that it has been totally flipped it on it’s head, opening a world far richer and somehow more important than anything in the past. Believe me when you are sitting here struggling to type, to find the right words and a body determined to get your attention through pain, being inspirational is the last thing I have in mind. Life is a strange process that just seems to get stranger and stranger the longer I live, I can only guess that it is the way it is meant to be.

Together for ever

Well today is fun, I’ve mentioned a few times recently that my hands are causing me a few problems, well today they have entered and entire world all of their own. Every evening lately they have been either sore or numb or if they feel like it both at the same time, but I knew where it was coming from, all my typing during the day. Hold on whole I explain as it isn’t quite what you might think. My figures have been feeling in numb and slightly enlarged causing a restrictive movement, to look at them they are OK. In the way I described the other week with regards to my feet, it is like they to are now wrapped in marshmallow, my nerves are somehow extending outside the real restriction of their real size and shape. The result of this is really annoying, I am hitting all the wrong keys. I touch type but when you are not sure were your fingers are, in relationship to each other or the keyboard, well to say the least the result is interesting and exhausting. I am retyping word, after word, after world, in an attempt to get it close enough to allow spell check to fix the muddle. When my fingers are moving there is no real sensation out of the normal, what they do is pot luck but well they don’t hurt, when I rest them, in flies the pins and needles and the tingles.

Last night they were actually puffed up after their day of more than double the normal amount of work they are used to. The muscles where shot, just throbbing and feeling enormous, I spent most of the time sat watching TV just messaging them, but they felt almost set, if that makes sense, as thought the muscles had stiffened into a place that although they still worked, somehow had become like soft wood. It isn’t just my fingers but also the palm of both hands, they were the first area to developed the solid sensation and the areas that seemed to demand the messaging. When I went to bed where usually I spend the first 10 to 15 minutes, with my legs and feet giving me hell, last night my hands did to. Usually I just have to relax the muscles slowly until they reach the point where sleep is possible, it is a system I have used for years and still works quite well, I had to do exactly the same for my hands.

I have now for years been unable to make a fist with my left hand but just now I can do it with neither. If it ended at my hands then fare enough but this morning it stretches through the muscles right up to my shoulder, just as my hands nothing until I let them rest and instant setting and a tingling numbness appears. My dexterity away from the keyboard is just as interesting and well tested, today is the day for the shopping to arrived. Keeping the individual items safe until they reach their storage space has been a challenge but I am slowly getting there. I was lucky today as it was the really nice delivery man that I see frequently, that frequently that I think he now knows when things are easy or difficult on that day. Usually the shopping is just left on the floor in the hall, but he took it upon himself to set all the fridge and freezer shopping and all the fruit on my kitchen counter. He knows me that well that he even left me a space on the counter, so I could sort out each bag, now that is service!

This is the first time that my symptoms are symmetrical, I am so used to everything being my left side, only or worst that I am really find it odd that it is fairly shared, both index and thumb are the ones that have gone stiff and numb and both outside two fingers are sharp nerves and tingles. Both are slowly over the days getting worse at the same rate as well. I notice yesterday evening that when ever I was on my feet that I was letting my arms just hang and move with my body as though they didn’t work at all. Just dangling was the most comfortably way, as guarding both just wasn’t possible. All the fun of having a nervous system that have given up having any systematic reasoning.

Finding Understanding

I didn’t realise yesterday a I wrote just what I was stirring up. The way I write really is a flow system, I start with a few selected sentences and I just run onward until there are no more for that day. It is I suppose a little haphazard but it works for me and I find that it forces the truth as I haven’t sat and worked out what to say, so only the truth can come out with ease. Just sometime though I start my mind working on what I can only explain as an area that I subconsciously had locked away, those things that we know but without a conscientious decision don’t want to think about. That is the danger I suppose of what I am doing, I am opening up my world and my very self in every way to everyone, including myself. I allowed my writing to open a door and my attempts to shut it, haven’t actually worked.

I have been thinking more about what is happening to me and how those slow steps down can be managed as much as possible to keep my life steady. I realise having thought about it, that I was naive to think that just as I have had a series of major events that change everything, that all of what MS will do to me, will be just like that. When I look at just the last year there has been a steady downwards slope that I have been traveling along with considerable ease. But that is because I have been lucky. I have the three parts of my that I see as the most precious intact enough to live my life within the boundaries of my happiness. I still have enough of my memory and mind power to think and write and understand. OK even that has changed due to my concentration problems but ‘I’ am still here. I still have enough eyesight to enjoy my world and enough to use of my hands to be able to type and operate my PC. The third is my hands without them well the PC thing would go. I see those three areas as essential to living a fulfilling life for me, I have lost so much else that these are the minimum requirement to maintain my happiness.

What has changed in the last year in brief are things like my mobility, my digestion and bowels, the pain levels in my legs and pelvis, my concentration and my trigger touch emotions, the stuttering and word lose. All of these are clearly in the progressive changes list, they have actually slowly continued to get worse, they are the drip drip things and the things that I had some how locked into the section I call normal. That is what I have been doing, hiding them in a tag that they don’t belong in because that way I didn’t have to think about it. If I just take one say my emotions, a year ago I only ever found myself bursting into tears when someone else said or did something trivial and instead of being angry or annoyed or even happy I would start crying, now, well now I can do it to myself, I can be writing or watching TV and totally inappropriately I will start to cry. It is always crying never laughter just tears, mind you laughing out loud when there is nothing funny might be more embarrassing than a few tears.

I think I have been hiding the truth as I just don’t want to see it for what it is. I was about to say, ‘I don’t understand why’, when I had a brick strike me between my eyes. It is so blindly simple, a major change is a challenge, I can apply myself to it and look for solutions because I can quantify it, I know exactly what I am up against, but how do you fight or quantify something that take weeks of slow change without being able to see it as that, the difference from yesterday to today is so tiny that it may be no change at all. I can’t look ahead of it, as I don’t know exactly where it is going, or what and how it will change. I can’t find solutions, as what exactly am trying to fix, how do you follow something that is untrackable.

Conclusion, progression is a bitch! It has also answered something else for me, I have a long term project that I have been planning for ages but I keep finding reasons why not to start yet, I now see why. I’m scared that the progression may beat me before I get to the end, as I just don’t know how much time I have before that concentration, or my hands or any other part of my stops me for ever. I am comfortable with blogging as it is daily, it starts and ends each day, but my dreamed of book hasn’t happened, as I don’t know if I will ever be able to finish it and I hate starting something and not finishing.