I used to think that it would be impossible for me to live past the age of 20, people of that age seemed so old and so useless that how could I ever land up being like them, mind you I was only about 13 at the time. I know from talking to others over the years that almost everyone has that feeling, not just when they are 13, but on through their lives adjusting their maximum age upwards, as they pass their last horrific age. There seems to be something inborn in us that needs to put a limit to our lives for whatever reasons we have at the time, but mostly because it is our view of being old, of not having the verve and excitement for life that we believe ourselves to have, we just can’t see ourselves as anything less than we are at that moment. You would think that at some point we would see just how silly that is, or even just how vain an act it really is, but that age keeps moving up, always holding on to that belief that we can somehow cheat the ageing process by dying while still as perfect as possible and without degrading any further.

Ageing seems to be our biggest horror, when there are so many things worse in life than just getting old, we just can’t see past it. I still can’t even though my body has degraded far past anything I ever imagined ageing could actually do to me, it is still that thought that I will be old that holds far more horror than I will be further disabled by my health. The maddening thing is I have no reason or history to base any of it on, all my elderly relatives were amazingly fit and active well into the late 70’s and 80’s, I had the perfect role models as how to grow old, without letting go of life. Yet still I can’t see past that point in the future that I count as too old for me, it’s nuts but yes I am still doing it.

I am 53 now, in our modern world I am not old when you look just at my age, but my health has taken a toll on me that has aged me well before I should have. Right through my adult life I always seemed to be doing things that were just not average for my age, I have managed to mix up and rearrange all the milestones, managing to not become a fully grown up member of society until my early 40’s. So why am I still shocked to find myself living what I always imagined would be the way someone in the 80’s or 90’s would, way before my time. I suppose it just goes to show how little a number on a birth certificate really mean, especially when we forget to factor in the possibility of chronic illness or disability, no one ever sees them as a possibility waiting just around the corner and no one ever tells us when we are growing up, that it might just happen to you.

Just like yesterday, I am finding comfort difficult, I really do seem to be in a run of bad spasms, ones that make me pay attention without the option of being able to push their effects into the background. I have found myself in the past few days no longer sitting with my feet flat on the ground, the muscles in my calves and shins seem to be almost permanently tightened so that only the balls of my feet can possibly make contact with the floor. It’s not just happening when I am sat here, but also on the settee which is much lower and actually makes that position totally unnatural, it seems to be only when I am walking or I make a conscious effort to push my feet flat, that I manage to feel my heels making contact with anything. If I keep my mind on them, just as I am now, I can hold on to a more natural position, but once my thoughts are interrupted and I let go of them, it isn’t long before I find once more I am back up on my toes and all my muscles are again tight and painful. I catch odd things like this happening all the time, almost as though I have to consciously keep checking what my body is doing, or it is in danger of doing something ridiculously painful all by itself. I have lost count how many time, especially when I am in bed, that one of my limbs has moved quite a distance without me being aware of any movement at all, it is only its final position that alerts me to the fact anything has changed.

One of the things that I am noticing more and more is a strange sensation where my body is actually telling me that parts of me are not where they really are. For example I may be getting normal signals as thought my arm is laid across my body and I can actually feel it on my skin the lot, but the reality is when I move it, I suddenly get the correct signal, that it is actually lying by my side. It isn’t just when I am in bed, if it were, I would put it down to the fact I was partially asleep, but I have found it happening when I am totally awake, but always when I am motionless. The idea alone of not really knowing what your own body is doing is scary, to date it hasn’t happened when I am moving around, but there is that possibility and it is one that could be dangerous as I could easily manage to hurt myself. Confused signals from my nerves I suppose make sense with a condition like MS, as it eats away at them I can easily see how it could happen, but it is by far the oddest one I have had to deal with so far. For now, on the scale of things it is a tiny problem, one that has potential but for right now, one I am just noting in case I need to know in the future just when it all started.

Please read my blog from 2 years ago today – 23/03/12 – Just checking the webcam

I woke this morning with the pain in my eye again, it was the first thing I noticed, even before trying to turn the alarm clock off. I have wondered for a long time now what is the point of this painful, virtually blind orb set in the left side of my face actually is.

As is the story with most of my body it isn’t content to have just the problems of MS, it had to go out and find something else to accessorize it with. They call the MS symptom Optical Neuritis, it causes blind spots and blurred vision and of course the MS favorite, pain, sometimes it is constant…..