It’s been a sort of slow start for today, Adam is working overtime today and it kind of upset everything. Saturdays are usually started with him sleeping on the settee while I quietly work my way through my morning routine, one weekdays he leaves the house for work at 8:20 and I take it from there. This morning I knew he was working and that was the problem, I kept sitting here with growing pain and a desire to have my breakfast but because I work so strictly to routines, I just couldn’t work out what was wrong and I pushed myself on. It was 9am when eventually the whole thing clicked in and I stopped and headed for the kitchen. I really have lost all ability to exist outside what I know, clocks don’t matter to me any longer I work totally on what is supposed to happen once something else is completed, which for a person who was so obsessed with time that I used to have clocks everywhere, including three in the bathroom, is hard to accept. I actually still have clocks everywhere but since my eyesight has drifted, well I can’t see them all any longer and I have forgotten about changing batteries, so the clocks are there, just mainly not working and the ones Adam has looked after, all tell different times. I thought once Adam went to work I would be able to slot back in to normality but then I made a huge mistake thanks to last night. The first show of the season of “Strictly come dancing” was on far too late for me to see, so it’s showing at this second so that I can watch the live show tonight, it is though a HUGE distraction, another thing that I really don’t need.
I have this vision of my future life where just to survive everything has to be strictly regimented, way beyond where I am now. I haven’t reacted well to change for a very long time now, even landing up in flat panics at times and it is another one of those things that I know is getting worse not better. It’s not like OCD where things have to be done over and over again until I feel comfortable, it more like living on train tracks which have to be perfectly aligned or my life is derailed. Right now if things go wrong I can pick a point and re-enter my routine, but I still find myself panicking for several minutes as I am scared that I have missed something or done something twice. It is like the second my brain knows there is a tiny thing wrong it becomes convinced that that tiny thing is what makes the world keep turning. I have even wondered if my need to eat the same food everyday is part of the same problem, at the minute I do have the odd variation as I most afternoons have a snack of some sort, either a couple of Jaffa cakes, half a melon or a square of chocolate, but other than that it is identical every day and I have no desire to change it despite the fact I know no one but me can either understand it, or could stand not having any variation.
I was told a long time ago during one of my assessments that the damage done to my brain was demanding routine, it is the reason that I fall into complete panic when things aren’t where they are supposed to be, right down to ornaments moved by a few centimetres when cleaned. Knowing the reason doesn’t make it easier to live with, in fact it makes it all the more annoying because I have a logical answer to an illogical situation, run that through your mind a couple of hundred times and see if it doesn’t drive you as nuts as it does me, as the illogical can NEVER be logical. Right now I spend my life correcting anything that I see that is out of place, I have often wondered if that is part of my love of not opening the curtains and not turning on lights, if it’s dark I can’t see what is wrong and I get peace and don’t have to keep standing up to fix things. I don’t think I have ever tried to explain what goes on in my side me when things are wrong in this detail, in the past I have skimmed over them, just saying that it’s upsetting or that I panic, but it goes a lot deeper than that. One thing in an entire room out of place, throws me in to a panic, because I suddenly don’t recognise where I am, I is as though that change means that the whole place is wrong and if the whole place is wrong, then where am I. Then starts the stupid argument in my head that I go through trying to tell myself that I am where I was a second ago, that I do know where I am, I have to be in my living room, kitchen which ever room it is and that I am not lost, I haven’t been plucked out of my home and dropped into an alien environment, but the fear, the feeling of being lost just goes on, until things are put right again and I have double checked that the room I am in is just so, correct to my brains image and I am then once more at peace with the world. I have on several occasions become so wound up by it that I start to physically shake and cry, if I get to that point, well it takes me a long time to restore calm and to settle myself back into the day.
Adam has I think only seen a couple of the really bad ones, but he is very aware that things not being right upset me. It takes me days to settle to a major change and I only settle to it when I can’t actually really see it. I know that sounds nuts, but what I mean by that is for example Adams laptop used to be kept in the cupboard, he had to take it out and set it up every night and put it away when finished. Over a one winter it started to be put under the coffee table instead of the cupboard, then occasionally left on the table, now living there permanently, but the change was made during the winter when the curtains where shut and I couldn’t really see it all day long although I knew it was there, slowly my mind accepted it’s presence and I adjusted, just as I have done to knowing there is dust sitting on things and my house is no longer perfect, slowly I do adjust, but it has to be really slow.
It is one of the things that really does play on my mind as I do fear what the future will be like, with my memory failing so often. I worry that the two combined may turn out to be a deadly combination and that I will spend a lot of time terrified by nothing more than my memory, that I could actually be the one who sets up changes at one moment putting things as they were years ago, like putting the laptop into the cupboard, only to later realising that it isn’t on the table as it has been for a long time and going through it all over again, panicking as I search for it to put it back where it was before. My brain driving me to move around, fixing things in a body that simply can’t take that type of activity, causing more pain and fatigue is simply cruel. The ultimate fear is that I might fail totally to even recognise our home as where I should be, simply because I have at that moment forgotten it totally. I know these things are lived with by far to many through conditions like Dementia, Alzheimer’s and Parkinsons, what many don’t know is they can be part of MS too and is why I often refer to it as a monster as it isn’t happy with messing about with nerves and muscles, causing pain and exhaustion, it has to eat our brains too.
Read my blog from 2 years ago today – 27/09/12 – Outburst > http://bit.ly/UZkOVM