Becoming locked

Normality has been restored, Adam is back at work, which means I can have the TV on at a level that I can hear it and pay attention to what they are saying, whilst doing something else, like this for example. It is the only form of multi-tasking that I still do, I used to always be doing more than one thing at a time and this restriction on my life was actually really hard to accept for a long time. I can remember times when I was cooking a meal, working on knitting something, usually Arran or Fair Isle, watching the kids and listening to the TV and I was able to be spot on with all of them. These days, this is the closest I get to anything like that and even then I often find now that I have lost track with the TV, but the good thing these days is that even live TV can be wound back to the point you lost it. I know all of that sounds really trivial, but to me it is the everyday thing that reminds me that my brain just doesn’t work the way it used to, it can’t really cope with more than one thing any longer. Even in the evenings, I often find that I don’t notice Adam is talking until he is half way through what he is saying. I’m not ignoring him, far from it, I am listening out for him all the time, as it is the only time we have together, but my brain lets me down, holding on to the TV and missing the important things.

It actually took me a long time to realise just how many skills I was losing, concentration was the first, but that is concentration when you are only dealing with one thing, such as just now I found myself wondering off looking at pictures of the Outer Hebrides. Yes, you read that correctly, one minute I was writing the next I was staring at pictures and racking my brain for the correct name for a Scottish fortified tower, built around 100 AD. Thanks to Google I found it, it’s a “Broch”. A break in concentration pulled me away from what I was writing and a blank spot in memory started to drive me mad, strangely it is often Google that comes to my aid on those memory gaps, but nothing helps me with concentration.

I know that that example seems like it is something trivial, but apply those problems to cooking a meal and you might start to understand. When you lose concentration you can land up wondering off into things that take you away from your task for hours. I have lost count the number of meals that landed up in the bin, either burnt to a crisp or simply destroyed because I added something more than once and made it inedible. On one hand it is a waste of money but on the other, well it’s a fire hazard, one I wouldn’t notice until it is too late. At first, it is so slight that you don’t really notice it, but when nothing gets done, nothing is ever completed, well life gets harder and harder. More than anything this is the problem that would stop me from working, even from home. I know all to well that I am not able to do any fancy programming work any longer, I doubt I would be able to supply anyone with accurate reports or even be able to workout department budget or rotas. Concentration is vital to all of us to be able to function normally, then add in the memory thing and well there really is no hope. The more I try to hold on to what I am doing the more I find I have lost it and something else has pulled me away, memory blanks mean I often remember what has to be done, but I can’t give you the reason behind it, or I get stuck half way, as I have no memory of how to complete the task.

When you find yourself sat in your own home, unable to do even the most basic of things, because your body and mind are incapable, it is hard to accept and even harder to understand. No one ever thinks that a time will come when all you are capable of doing is no more than you would expect from a child. Sometime’s I think it would be easier if I lost all memory of my previous life if I didn’t remember how sharp my brain once was, how I could throw funny sarcastic comments before I even knew I had done it. How just 13 years ago I was climbing ladders, decorating our home, not just with paint but complex hand painted detailing in borders, window surrounds and anywhere I thought they would look good. How I taught myself to plaster, to make fake stained glass and to produce wall hangings, as we couldn’t afford to by pictures that large, whitest I also worked full time. If I could just forgot all of it, well then it might be easier to accept that I am now a shadow with no chance of being whole ever again.

I know I still have a greater vocabulary, a deeper understanding and a vaster knowledge than a child, but I am when it comes down to being a useful member of society, well the fact is, I’m not. It is easy to concentrate on the physical side of MS, as that is the one that other understand. Physical disability eventually becomes visible, when someone walks holding on to everything as they go, but still moves slower than a snail, well people notice. Once you are in a wheelchair there is no deceiving anyone, but when you forget, when you aren’t able to complete simple tasks because your brain lets you down, suddenly people see you as stupid. The really bad thing is you start to believe it because that is exactly how you feel, stupid. I don’t know when it will happen but clearly my brain is slowly closing itself down, just as my body is, you might not be able to see it but it is far more scary then losing your body. Every time I open my mouth, I get it wrong, stutters are one thing, muddled words and silences forced on you because you don’t know what you were saying, well they confirm daily that there is less and less left.

I sit here daily, writing and writing because this is becoming slowly the only place that I can get what is in my head out, I find that the most scary thing of all, as I can see that eventually I will be locked inside myself unable to communicate. The day will come when I won’t be able to type anymore, even that is getting harder and taking longer and longer, words don’t flow as they used to and my hands don’t hit the correct keys. I don’t expect the end to happen tomorrow or even next year or the one after that, but I can feel it happening, see it happening and I know it is happening and there is nothing that anyone can do about it. Anyone can live happily with a useless body, but a useless brain is quite another thing.


Please read my blog from 2 years ago today – 06/05/12 – Being positive

A question was raised yesterday that linked in my head immediately with comment sent to me on Twitter, the question was does being positive all the time really help? I don’t know. I can say totally without question that being told to be positive doesn’t help anyone. I don’t believe that being positive makes anything better if it is a false put on positive. All those crappy motivational talks and books that are out there are just one big con. For many years I was not just a sales person but also a sales manager, I was trained continuously by people making a living out of motivational claptrap. I also got a lot of bad reports sent to my manager say I was totally negative and refused to take on board what I was being taught. Well, if asking questions……

The merciful component

On the news the morning once more the were talking about the demise of bookshops on our high streets and how people just aren’t going to town to buy books anymore. Right now in my living room I am surrounded by books, books I would really not like to be without, but books that the majority of, haven’t left their exact location since they were placed there 13 years ago, when we moved into this house. I actually can’t remember ever buying a book in a regular bookshop, the majority were either bought while passing through stations, or from discount stores. There have been many times in my life when I always had a book on the go, when Teressa was little I developed an art of reading almost all the time regardless of what else I was doing, even watching TV. Just as my book collection hasn’t moved, I haven’t held or read an actual physical book for even longer, it seems to be one of those things that has just disappeared from my life, along with so many other things that you don’t even notice until someone brings it to your attention. I guess that life is like that, things are important to us at different times, so important that we work our lives around them, but years later we don’t even give it a passing thought.

We could all sit and make a list of those things that meant the world to us, from childhood up to the present day, I think it could actually be a really uplifting thing to do as that list would hold such wonderful memories. From teddy bears to comics and sweet, to those shoes we had to save for as we just had to have them, memories that fill us with happiness and laughter as some seem so stupid now. I have heard it so many times from so many different people that one of the things that people who like myself have an illness that destroys our minds, should take that time while we can to make a memory box. I have thought about doing it but that biggest problem for me is that I no longer have the things, the physical object that truly represent any of it before maybe the past 20 years. The physical picture and objects have gone, long ago destroyed first by my father and then, by my first husband, apart from a handful, there is nothing left to prove I was ever there. A few years ago I set up in the house what I call my memory trail, I thought it might be a way of replacing what I had lost, ornaments and pieces of crystal, things that although not really connected were close enough to do their job, but it has already started to fail, it appears that real memories can’t be associated to false objects. I found myself the other day hold one of them and staring at it, but there was nothing there other than a beautiful crystal, which I could remember buying and why I bought it, but it’s tail memory had gone. I just hope that I don’t forget how to read, as at least I have this, through everything I write there is always those places where I have told a story of my past, memories that at that point I still had and many I still have to tell.It’s kind of mad how when you know your memory has a fault and one that will only get worse, just how quickly it become really important to try to remember everything and I do mean everything. I now know that remembering is actually harder than trying to forget and trust me it is still what I tried to forget that comes to mind the most easily.

There is one thing that I am actually really surprised that I don’t really remember, especially as we all spend our entire childhood there, I have very few memories of school and outside of my close circle, I don’t remember even the names of those I spent every day with throughout all those years. My memory of the buildings layout, architecture and surroundings are totally clear, but I can’t remember the faces or name of more than 3 of my teachers, and as for the lessons well I don’t remember even one. If asked, I would actually have to say that I wonder if I was ever really there, despite the fact that I know I rarely skipped school at all. Things seem to be slowly going missing and I have no control of where they have gone, if that wasn’t odd enough, there is one fact even odder, for some reason I am actually no longer distressed by the fact I can’t find them. Just as I have adapted to a life with pain as being my “normal”, it appears that I am also adapting to the fact that not remembering is also “normal”. For the majority of the time it really doesn’t matter, it’s not as though we all sit around trying to remember conversations for 40 years ago, but then something will be said on TV, or Adam will be talking and suddenly I am aware that I can’t relate, I can’t find my own memory of that time, that situation, the things everyone else seems to share. Inside my own content bubble I am perfect, I am alive and I am productive and capable, outside it I am in pain, I have no memory and I can’t complete a sentence without forgetting, losing, or muddling the order of my words. I don’t understand where my bubble came from, it just appeared, I can’t even tell when it arrived, but my bubble keeps me feeling sane inside what otherwise would be a horrific and scary existence. My dysfunctional brain has triggered its own self-defence system, one I believe I have seen in many others, especially those with conditions like dementia or Alzheimer’s. Yes I can get frustrated and anxious when my world is disturbed or changed, or when things go wrong, or I can’t remember when it’s important that I should, but on day to day running my bubble keeps me safe. Somewhere inside this illness there is a merciful component that take it all away, what I am not sure about is, is will this growing bubble prove to be a good thing, or a bad thing for my future.

Please read my blog from 2 years ago today – 23/02/12 Styling required

I have avoided cameras for years, believe me it is an art which I have honed to a skill. Adam tried the other night to take a couple of pics as I had been advised the my photo on ‘Linkedin’ wasn’t helping me on my…..