Putting things back together

Calm and ready to go, well that is the story I am telling myself today, calm being the most important part of it all. After yesterday’s free fall into confusion, panic, isolation, agitation and pure hell, today has to be a better one and the best way I know of achieving that is to stay calm, to hold on to the normality of my day and just work my way through from now to bed time without letting go of total calmness. All of yesterday was so draining that by the time I made it to bed, I felt like I was just a shadow, one that if someone had blown on, would have disintegrated totally. It doesn’t matter how much you have analysed your health and take in what the doctors and professionals tell you, or even how much time you have spent reading about how MS changes you as a person when things go wrong, it is worth absolutely nothing. Logic and learning the two things that you would think would help to get you through just don’t work the way you expect. Don’t get me wrong, being able to say this is happening because of x,y and z are good, it stops you from the actually panic of not know what is happening, but it doesn’t change the reality of it, it still happens and all the knowledge in the world, can’t change that.

I don’t think there is a single symptom that when it first appeared, that didn’t have me convinced that something terrible would happen, probably the most scary was one of the early ones when I went blind in one eye for several hours, leaving me with sight issues for days which slowly rectified itself. It happened and it passed, but no one at the time had the slightest idea why, but it was the trigger of my trying to piece together myself what was going on, as the doctors couldn’t, I was the only person that might. I don’t know how many times along the way I actually came to the conclusion that I had MS, but I was the type of person who doesn’t go to the doctor and dare to tell them what I thought, no I just went to the doctors and tried again telling them what was wrong, in enough detail that I thought they would go, yes this is MS, they didn’t. Now, of course, that problem is gone, but it doesn’t mean that I have the answers any more than I had in the past, it just means that I can find a strange kind of comfort in knowing what is behind it, even if it doesn’t make me deal with it any better.

Right now and for the past 3 or 4 days, an area about the size of a fifty pence piece on the palm of my left hand, covering the knuckle joint of my index finger that is driving me nuts. It started as just an itch, a small annoyance and it built and built to the point where yesterday and today I have been tempted to take the cheese grater to it, of course, I won’t, but nothing I use to scratch or sooth it with works. I mention it as it is such a silly little thing, but also a great example of how MS drives you mad and how something that is clearly caused by nerves breaking down and logic should deal with totally, yet it still drives you mad, ticking away all the time, demanding that I scratch it again and again. Everything about MS for me is like that stupid itch, too many years of gaining knowledge and understanding in full what is happening, still lands up with me becoming frustrated by it and in turn opening the window to stress and the spiral of all the other symptoms waiting to join in.

Staying calm about everything is probably the most important thing you can do, I have now lived in the calm bubble of my home for 7 years, life has been ordered and level, I have adjusted and no longer get wound up, well not as badly as I used to, over things being a mess or needing cleaning. My bubble has been protecting me from all those triggers out there, otherwise known as humans and life has ticked over, day by day, calm, ordered and exactly the same as all the days before. It hasn’t protected me from my MS, it has still progressed and it has still flared, but I know inside that without a doubt, my bubble has slowed things down, taken away the dramatic and the crashing severest symptoms I used to struggle with constantly. Since I entered the bubble not once have I had to stay in hospital or take steroids, not once have I had to hit that panic button and scream for help, my bubble has shielded me totally.

It doesn’t matter how well you build you bubble, life breaks in occasionally, just as it did yesterday and when it does, well everything falls apart. Staying calm isn’t an option when your brain explodes and once the explosion has started nothing, but time can repair it. I have tried the relaxation, I have tried the soothing oils and all the other things people suggest, but brain damage doesn’t work that way, the clue is in the word damage. I now know that if it hadn’t been my left arm dying, it would have been my inability to deal with the stress that people cause us, that would have pushed that button and made me move indoors. For each of us the button will probably be different, but once you are here it is too late to start building, your nest needs building from the day you are diagnosed, if there is the slightest chance your condition could result in being housebound, then now is the time to start building your nest, your bubble. Today I am patching up the hole, establishing calm and doing what I can to repair my bubble so life will just go on, calm, paced and in it’s all so important routine.


Please read my blog from 2 years ago today – 23/07/12 – I hate my leg

Sometimes, I pick random post and read them again to see if things have changed from that point to now, it is easy for me to think everything is steady as it is like looking in a mirror you don’t notice that you may have lost or gained weight, I don’t notice the day to day changes and there seem to have been many more than I thought. I realised that the argument with Adam the other…..

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