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…..

3 thoughts on “The merciful component

  1. You’ll have to excuse me for being even more behind, fatigues and not with it than usual as I was in London all day at a Women against Austerity, part of the People’s Assembly. It was really good, excellent speakers, workshops and even met a another woman from Norwich who had travelled there. But I am absolutely shattered beyond belief so I will pay a heavy price for it, but for me, that’s what I need to do!

    Two things from previous days have occurred to me, yesterday I think you mentioned about stress being a possible link to your illnesses? I am almost sure that’s what has led to mine,(extreme stress most of time bringing my son up, now aged 30) along with a very traumatic childhood/early teen life at age 13 onwards. I have spoken to my Doctor again and he said my blood test showed up fine for what he tested(unsure on the nerve ending thing)and that he didn’t think anything happening with me was progressive. He also said that he has sent patients to see someone at hospital with nerve ending symptoms, but they couldn’t offer practical solutions, help?. I’m still not convinced and have to say I’m thinking more and more that some symptoms I have seem like MS, but am also aware they cross over, so doesn’t leave me anywhere? As well as the pins and needles, freezing&cramp etc., now getting just pain in my hands, which is slightly new.

    The other, totally different thing that occurs to me is you mentioned about eating more limited things and that Adam got really agitated and annoyed by it. Can I ask why it seems to bother him, don’t quite see what difference it makes? I know you say you do shopping online, so unless he cooks meals, unsure why it matters? I have had that choking and not swallowing food thing for quite a few years now, seems to have got worse in recent times and not sure if that’s down to Fibro or something else. It was bad the other night with sweetcorn that I got up from sofa and thought sweetcorn had got really stuck&was panicking, thought John would have to perform that Heimlich manoeuvre!! He said he does know how to do it and is prepared as has seen the choking getting worse.


  2. Adam has always been into body building and therefore has spent a lot of time studying nutrition, he believes he knows what the best foods for me to eat are and seeing me not eating them worries and annoys him. He just wants what is best for me and feels that if I would eat what he says I would be giving my body the right combination to heal itself better. But he accepts that I eat what I want grudgingly 🙂


  3. Thanks for that, I understand a bit more where he’s coming from. I was just reading lat night in an arthritis magazine about eating certain foods and that it is thought that can improve things. For me, it mostly seems more hard work in thinking and planning all the time about food and I’m not really prepared to do it! I do the best I can, always have done and for me, I don’t think that what you ate caused you to get ill and become disabled, just another stick to beat you with. On the other hand, there have been plenty of people who were really fit, into healthy eating etc., and it didn’t stop them getting cancer and other things!


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