A narative gone mad

It is official, my brain has left the building. When Adam leaves for work each morning I do exactly the same thing every day, I go to the kitchen and I sort out two things, my medication and my breakfast. You would think that that would be a simple enough task when you do it every single day, it appears not. I am still trying to find something that doesn’t make me feel sick in the morning so when I did a small shop the other day, I added a few options to my list, first was the hot cross buns which are now gone and next where some rather nice pain au chocolat, not something I would want to eat every day, but occasionally they make a treat. I decided that I as they were in the fridge that I would have two of them, they are far nicer when warmed through, so I lit the oven and left it to warm while I counted out all my meds and poured out the thick horrid gloop that is the medication for my bowels. Everything sorted out in the kitchen I came back through here to wait for the ten minutes it would take for breakfast to be ready, filling the time by sorting out a few more bits and pieces here online. I must have become engrossed as I suddenly realized that I had been sat here for at least 20 minutes and my pain au chocolat were going to be ruined. As fast as I could I headed back into the kitchen in the hope that I would still be in time to rescue them. As soon as I put the light on I was stopped dead in my tracks and stood there feeling rather confused, as there on the counter where the meds I thought I had taken, when I thought back I remembered that I had poured out a glass of coke to swallow them with but instead of taking them, I had left the room with my coke in hand. Not only where the tablets sitting on the counter, but I couldn’t smell breakfast at all, I should have been smelling burning or at the least the smell of overcooking, but I couldn’t smell anything, I opened the oven which was on, to see what was happening, nothing was happening as I hadn’t even put them in. Two simple everyday tasks and I had failed on both, I know it isn’t anything major or even that important as there was no harm done in any way, but it is annoying as once again I failed simply because I took one step out of routine and I lost the synchronisation of the tasks. Normally I pour my coke once I have done everything else, as the glass I pour when I first get up, usually still has enough in it to take my tablets. Pouring that glass of coke was a big enough distraction to my brain, for it to decide everything was done and I was then free to head off and get on with the rest of my day. I am finding it more and more frustrating as when you can’t trust yourself to do even the smallest tasks, well it makes the bigger ones more daunting, how can I do things like dying my hair, when I can’t even make my breakfast and take my tablets, what stage will I miss out and how much damage would it do.

Every single person in this world has a narrative that goes on in their head, it is there I believe to keep us sane and on track, it tells us what we are doing and what we have to do, plus it runs a story line to our life, it is the way we work things out and make sense out of things that have been happening. It makes us smile to ourselves as it picks up memories that we thought we had forgotten, or shows us the faces of those we love and it scolds us when we have done things that we are ashamed of, even when that thing is so many years ago, that we can’t even remember the year that they happened it. Despite the fact that it chatters away at us continually, when we are not engrossed in our work, the TV or conversation, we all live hand in hand with it and the second there is space for it to intervene and fill our minds with what it wants at that moment, it does. It is something most of us don’t even think about as it has been with us all our lives, constantly keeping us in check and ordered. I don’t know if it is because I have spent so much time in the last 8 years listening to that narrative, without the joy of work to distract me or even conversation, or if it is the damage that my PRMS has done to my brain, but I all too often now find that I can’t shut it up, that no matter what I am doing it distracts me. Even when Adam is here, I know that I lose track of what we are talking about because somewhere in my head, I am lost again listening to that chattering. That though is the truth of the lack of concentration, we all understand it when it is a case of something catching our eye, something material and tangible that we can use as an excuse for getting lost somewhere along the line, but when it is nothing more than your own mind, a mind that you can’t shut up, well that is when you feel you are really losing it. When you can’t hold onto even a stream of thought, like now when I am writing this, without racing off somewhere else with no way back other than to reread what I wrote myself, well it gets messy and I don’t like messy, inside my mind or out. The worst thing is that if you stopped me asked me where I had just gone, well that interruption would leave my mind once again blank, searching to just find something that makes sense, just seconds and my trail of thought, or even the chatter that gets in the way, has been forgotten.

It has been 7 years since they last did any tests on my brain, the last time that I sat and went through all their test, drawing shapes, naming the things in pictures, trying to remember lists or the facts from a story just been told to me. I did really badly on the last one, I hate to think how I would do if they were to put me through those tests today. Even the tricks they tried to teach me, those methods that were supposed to keep my memory working on my side, no longer work. When I do remember to use them, I fail because that chatter gets in my way and once again I am out of sync with what I should have been doing. Miss one tiny step, stop for a second, do anything that will allow my brain freedom to take me somewhere else and I fail, there is no way that I would remember any silly list that they read to men, nor would I be able to complete any of the games they wanted me to play. It wouldn’t matter how many pictures they showed me, how many different shapes I was supposed to remember and draw, I know without even starting them, that I would fail nearly all of them and fail them with style. I can remember so many odd things about those tests, but the things I remember aren’t the details, they are the feelings I had when I was sat there feeling like a child being forced to perform when all I wanted was to run away. I remember feeling insulted that I should be treated in such away, like I was some kind of laboratory trial, despite the fact I knew it was being done to measure the changes, but who were they being measured for. They say all the time that they can’t predict what my PRMS will do, so how do those tests help me, other than to tell me I am losing more and more of me. I honestly believe that if they were honest and just said that they wanted to test me to help with the data for those who will follow me down the path of PRMS, well then I wouldn’t have felt so bad about it all and maybe I wouldn’t have decided to stop going to see them. Being a lab rat isn’t a bad thing when you at least have been asked if you mind being a rat, rather than being told it was all to help me, it never helped, it just made me feel bad.

Life is a strange thing, we spend all our time desperately trying to make those lives better, to improve them and make something of them, then something unseen sneaks in and the one thing that drove us so hard, those thoughts, memories, dreams, and desires, suddenly become the very thing that stops us from achieving anything. It doesn’t matter how much pain I am in or how difficult something is to do physically, I like everyone else out there in my position continues to do what needs to be done, as we have no choice. Then this thing that none of us can live without, our brains, steps in to make every single act just that bit harder, not because it directly causes us more pain, but because it means we seldom complete anything as it was planned and constantly have to repeat those actions we would rather not have to do even once. Without the ability to follow even the simplest plan or routine, life becomes twice as difficult as it should be, if I could have just one part of me cured, one part of me restored to how it used to be, it would be my mind as it alone would change everything else.

Read my blog from 2 years ago today – 30/03/13 – Why sore > http://bit.ly/ZtJ54U

Apart from tiredness I have to say things aren’t too bad, mind you it could be covering everything else, I have found that happening before. It is almost like your body is so tired it can’t be bothered to ache at the same time, a form of laziness I applaud. To be honest I think it is more a case of being tired stops you from wanting to do anything else so you…….