What’s wrong?

I don’t know what time it was, as I didn’t look, but I woke because I was cold. In fact, it would be fairer to say that I was freezing! The Duvet was totally clear of my upper body and I remember quite clearly just thinking, “That’s why I am cold, now I understand”. Then I did absolutely nothing about it and just went back to sleep. There have been times in my life when I have truly questioned my sanity, when I actually woke for the day, I was doing so all over again. Not only was I still uncovered and freezing, but I had my head firmly placed against the draw unit beside my bed and instead of trying to turn off the alarm, I spent several seconds madly thumping the timer I use for my afternoon nap. My brain was so far away, that I had slept right through the fact that my chin was being sliced into by the sharp edge the draw unit, and that my right arm was totally dead, as it was hanging off the side of the bed. Even allowing for all of that, I had only one thought, “I don’t want to wake up, it’s too early”. Getting dresses was a mix of luck and forward planning. For a long time now, I carefully arrange my clothes as I take them off, just in case, I have a morning like this. As I swing my legs free of the bed, my feet settle exactly into the top of my pyjama bottoms, so well set that my feet don’t normally touch them at all, their first contact is with the floor, straight through the trouser legs. Without moving my legs, I can now also slip my socks over my toes, and then grasp their tops, inside my trouser legs and unroll them from toe to knee, a reverse of my night time movement. My top hangs off a draw handle, in such a way that I simply lift and flick it over my hands and the rest of the process, is simple. One dressing gown also hangs on a draw handle, placed so it can be lifted and my arms will slide with ease into the arms holes. Dressing gown two, I have to stretch for, as it is draped on my wheelchair, but it to is laid down in such a way, that again, no thought is needed. There is only one thing left to do, to grasp the tops of my trousers and pull them up as I stand up. Done. Dressed without thought of any form what so ever.

So, clearly this is far from the first morning where I have woken up with the totally feeling of dragging myself out of the middle of the night. The only time in my life, when I have felt this sleep deprived before, was when I was, no, not when my children were babies, that isn’t true sleep deprivation, it was when I was working on the radio in the morning and Djing live every night. If I was lucky, I got 2 hours sleep at night, half an hour on the train there and the one back, followed by 2 hours sleep in the afternoon. That was when I was lucky! It wasn’t the type of work where being half dead, was acceptable, no matter what, I had to be, bright breezy and on my toes, the whole time. Which was one of the reasons, if anyone wondered, why I gave up the radio. I didn’t like it and I was half dead. Right now, I don’t feel a great deal more awake than then. This morning brought the whole thing back like it was yesterday, on the good side, I didn’t have to be out of the house in 20 minutes to jump in a taxi to the station. On the bad side, I am sat here 2 hours later, feeling just as sick as I did most morning on the train. I have been struggling for days but this one is without a doubt the worst. For once, I can honestly say, that as soon as I have the bulk of today’s online contribution done and dusted, I will be going back to bed.

It’s odd how feeling in a certain way, made me remember an event in my life. You wouldn’t think that there were enough individual feelings for it to work that way. Yes, if we are talking about flavours or colours, they both have so many fine divisions that make them almost endless in possibilities, but feelings? I honestly wouldn’t have thought so. I am very aware that there are degree’s of everything, from happiness to sadness, as there are from well to sick, but that how we feel in any given moment could so clearly trigger a memory, surprises me. I don’t think that being blissfully happy, ever meant that my mind instantly jumped to somewhere else in time, so why does feeling terrible? I suppose it could just be the bodies self-preservation process kicking in. A reminder that you have been here before and remember the harm it did you then. But to wake up and almost instantly, despite feeling confused and as though I was drugged beyond belief, that my brain could still pluck out that one short period in my life where I pushed myself beyond all logic is pretty amazing. The more I think about it, the self-preservation angle is probably the absolute truth of what happened. We would never get anything done if we spent our entire lives, remembering every single time we felt the exact same way we do at any given moment. Remembering the bad feelings has a purpose, remembering the good ones, is just fortuitous.

Memory is such a complex thing, I don’t think, it is something any of us ever think about, until we find it under threat. Despite the holes and its flaws my memory, still surprises me daily at the things it comes up with. The oddest one has to be when it comes to TV. I have found myself hundreds of times, being able to fill in the detail of a show, by remembering what happened in episodes years ago. While at the exact same moment, been totally unable, to remember the name of the character, who is on screen and who I am talking about. Actually, I guess that the TV, just shines a spotlight on it, as the exact same thing, other than being able to see the person, happens to me all the time when I am relating stories. People that I knew really well, spent a lot of time with, are now just pictures in my mind. Who they are? Where they lived or who their friends were, totally escapes me. I have streams of relatives, who I couldn’t tell you a single thing about of worth, including their names, I just know they existed, some probably still do. Despite a handful of names, I couldn’t tell you who I went to school with. The majority of whom I spent my life with from aged 4 through to 13. They are now just greyed out faces, bodies filling spaces and nothing more. So much of my life is gone. It had to have been there once because I am aware of the spaces, but their details, have diminished, not even into dust in some cases, some have totally evaporated.

It isn’t just my childhood if it were, well I would put that down to age, the distance in time making it unimportant and forgettable. I can come right up to the time when Adam and I met, and even closer, those holes are there and their constantly growing. It might not be surprising that I can’t remember the names of all who came to my first marriage back in 1977 when I was 16, but to not be able to remember who was at my second, in 1999, isn’t just sad, it’s scary. Sometimes it feels as though my health has set of little Pacmen scooting around inside my head, chomping out the next bit of information that I might just need. Every time they see that brain activity light up, they fly towards it, racing to get there before I do. I guess that is why I often refer to my health as my “Munching monster”. It doesn’t just munch away at my brain, it munches at anything that I might possibly need, muscles, nerves, who knows, maybe bone as well. In fact, as I have Osteoarthritis, yes, at bones as well. We have been in a race against each other for as long as I can remember, which probably isn’t as long as I think, but the whole problem with any race is, there are far more losers than winners.

It doesn’t take a genius to work out, that right now, it is inching ahead. Just like I have done before, I need to regroup, to work out what I have to do and how to do it. How do I hold onto my life, without spending all of it feeling as though I’m playing catch up? It’s a constant question in my life, probably in many people’s lives. Assessment is an ongoing process, but for a long time now, the answers have all come back balanced, that’s why it doesn’t make sense. There isn’t any single point or even a collections that say “this isn’t working”. Everything individually is working fine, it’s just the overall result that is wrong. If you can make sense of that, then please explain it to me, as I don’t.

Please read my blog from 2 years ago today – 07/12/2013 – A plan for life

Adam came home last night from work with what he said was a small gift for, not unusual in any was as often he comes home with some cheese I love or something or other that he knows I enjoy to eat, in the past……

Where to

I love the way sometimes how you can be watching a TV program and suddenly you see something that makes you smile and draws you back more years than you care to actually admit. I usually spend the day watching loads of documentaries but there are a few exceptions, programs that I suppose we all secretly watch, the bad drama’s and light entertainment shows that you would be embarrassed if someone walked in and caught you. Therefore, I am not naming it, but there was a car I hadn’t seen since I was a child, well I doubt it was the same one, but it was close enough. My grandfather, from my fathers side of the family was the person who always somehow meant more to me than any other person in the family, even if he totally loved to embarrass me and did so too often for my liking. His biggest embarrassment to me was his car, he drove himself everywhere in a really old fashioned Rolls Royce, you know the vintage ones that don’t seem to go faster than a sedate crawl and not the sort of car that an eleven-year-old wants to be either dropped off at school in or picked up by, especially not at the start of the 70’s when anything old was a problem. Oddly I now see it as the sweetest thing and just seeing that car made me smile and lifted my mood beyond belief, but back then I just wanted to crawl into a hole and never get out of it ever again. I have spent most of my life running away from memories, I started running when I was just 13 and stepped it up just days after my 16th birthday when I accepted a proposal of marriage, partly because it offered me a fast route out of Aberdeen. Life is bizarre, I never once thought back then that my memories would be the very place that I would one day spend most of my time.

I never realised what I was doing when I spent my life living at a million miles per hour, doing things that most people of my age would have thought dangerous or in later years even childish and stupid, was my attempt to fill my head with new memories to cover over and blank out the old. Nor that my inability to stay still was nothing more than me still trying not to remember, but I know now that is what I was doing. I had this hope that by filling every second of my life with something amazing or even trivial, would then mean that by the time I was old and ready to retire, well there would be so much there, so much more that those bits I wanted to forget. Being housebound, no matter how busy you try to keep yourself it supplies you with one thing that you don’t know what to do with and that is time. Time, when no matter how hard you try, all you can do is live in the past as today is exactly the same as the day before and every other one in the past 8 years. New memories are small and actually don’t even belong to yourself, they are what you see on the TV or what other people tell you about and the only new memories are so small that they can’t possibly ever stand up against or cover over the old ones. 8 years of thinking is a very long time and I don’t think I have a single memory now that I haven’t travelled through at least once, if not many more times, again and again reliving the life that I wanted to escape alongside the one I tried to replace it with. Every day that I sit here writing there are those memories, those things I have already talked about mixed with the so far unsaid, but little of my life hasn’t been touched on at some point. It doesn’t matter if I am talking about my health, my feelings or my thoughts on any subject, somehow in my head there is the net that always catches hold of some thought that I believed was long gone.

There is something that I think I have noticed over the years, I say think, because I can’t be totally sure as I have this feeling that I have changed my memories, splicing some things together that never belong that way. There is a muddled fog over some things and when I try to push past it all I now find is a bigger muddle. Some things have become clearer, things that happened in the past 20 years, I have discovered there are things that I now see were my fault, although at the time I didn’t believe they were. Analysis sometimes has the effect of uncovering the truth, but the further back I go the more and more muddled they are getting. It is as though I have a handful of crystal clear pictures and all around them is just this growing bank of fog slowly eating up the less clearer ones, until they start to vanish. If someone had asked me what the outcome of going over old memories would be, either making them clearer or making them vanish, I would have without any thought said they would become clearer. Just like when you think you don’t really remember that book you read years ago, the second you start to read it, the rest all falls back into place and the need to read it again goes, as you still hold every word. Seeing that Rolls Royce brought my grandfather back to me along with his desire to embarrass his granddaughter, but I can’t for the life of me remember how he looked, other than he was thin and very tall, I couldn’t and can’t see his face at all.

I have known for a very long time now that my short term memory is of little use at all, but long term, well everything I have ever read has said it shouldn’t be affected. I don’t remember having problems just a couple of years ago, but that is relying on my memory to confirm that, how do you trust something that you know 100% is wrong in far too many places. I don’t suppose there is anything that I can do about it, but it is just another part of what I can see is going to make my life more difficult as time goes on. As I said, memories are the place where I spend far too much time, but if those memories are going to keep disappearing, then where do you go. To date, when I have written about this, it has in itself been rather vague, just the fact that I can’t remember odd things, nothing that was clear enough to hold onto, but that list has grown and grown until now I can be very clear about what has gone. There are so many people that I can neither remember how they look or what their names are, people I should know as I saw them from my birth onwards, but now they are just shapes or the knowledge that they should be there, but their not. If it were just people, well that would be bad enough but there are places that I know I should know well, but they too have gaps or feel wrong as though I am bring two totally separate places and trying to make them one.

Losing your past wouldn’t be so bad if you could select what you want to go, but it doesn’t seem to work that way as the things I was running from in the 70’s still hold their place as big and as darkly as ever. I remember saying along time ago that I thought losing my memory wouldn’t be that bad as if you can’t remember how do you know it even existed. It appears that it’s far more cruel than that, you do remember, you remember that something should be there but isn’t and that is worse than trying to run away as you find yourself running towards the unknown, slightly scared of what it might be or what it will hold.

Read my blog from 2 years ago today – 18/04/13 – Over again > http://bit.ly/14vFzjn

Yesterday I took a tumble, not a serious one, I just went over as I was heading across the hall to the bathroom, one second I was walking the next I was twisting and pulling muscles as the floor was suddenly under my shoulder. In truth like most falls, I……

Snowmen and specters

It’s cold, a statement that after watching the news I guess almost the entire population of the UK will agree with. As is normal, Glasgow so far doesn’t seem to have had a single flake, something that from my first winter here, I really really missed. Having grown up in Aberdeen through the sixties and seventies, well snow was something we didn’t just see once every few winters, it was every winter and we had days and days of it. It wasn’t even just my childhood that was filled with snow, in fact, other than when I lived in Plymouth, I can’t remember a single winter where there hasn’t been enough for a decent snowball fight and a good sized snowman. Snow is the one thing that still wakes up the child in me without fail, but oddly the most fun I ever had in the snow, was right here in Glasgow, when I woke to find that it had unexpectedly been snowing. It was 2 am, I woke my then boyfriend and we headed out to build a snowman, one huge one in the garden area behind the flats overlooking the river and about a dozen tiny ones that we placed on the bonnets of every car in the car park. I never understood why being an adult meant you couldn’t have fun, actually if we think about it, we can have more than most kids do as we don’t have anyone to tell us no. We were asleep when most of those cars left, but to this day, I have this fanciful image of all our snowmen driving around the city making people smile. My snowman years may be behind me, but that doesn’t stop the child wanting to just know that it’s snowing out there and somewhere someone is doing just what I would, if I could just get out there.

Memories are funny things, there are the standout ones like the above, that I pray will never be taken from me and then there are the everyday ones, which far too many of already seem to be muddled or missing. Just like the room in one of my previous homes that I still know without the slightest doubt was there, yet even months on after losing it, I still can’t remember what it was used for, or even the have the slightest clue what was even in there. On it’s own, well what is one room out of a lifetime, but it isn’t just one room, I have more and more gaps, all with doors over them that I can no longer open. I can still remember clearly almost everything about every home I had as a child, the main events of my childhood are still there, even those that I truly wish I could forget, are still there as vivid as ever, but the names and the faces of those who were around me, well they have faded. Move forward into my twenties and strangely things get even worse, I don’t understand why but like that room, I know there are things missing and it’s not just people, but events that have gone or become mixed. It’s odd to explain as on the surface when you say you have forgotten, well that sounds like there should be nothing there, but it isn’t like that at all, as what you find are truly disturbing gaps, horrid spaces that taunt you like some kind of spectre, stood there in your mind telling you, you’re not allowed to access there. I never understood before why people with Dementia or Parkinsons were portrayed on TV and film as disturbed by not being able to remember, forgetting surely meant they wouldn’t be aware of anything wrong in their mind, now I am beginning to understand. For me it is silly things that I can’t quite see any longer, things that I can brush aside as they are small individual spaces, but there are enough of them now for me to empathise with those who have lost so much more than me.

I would have to say the most useless bit of advice anyone can ever give someone like me, is to say to them “don’t worry about it, it’s not important”, it is only not important when it is someone else not you. It doesn’t matter what it is, memory or a some other symptom, they all matter when it happens to you as it’s personal, especially memories. My PRMS can do whatever it pleases to my body, in fact, I would give it permission to if it just left my mind alone. The physical is always manageable, there is a pill or a trick or a way around, but none of those things work on your mind. I know many people build what they call memory boxes, well that one is almost impossible for me as I just don’t have the things to put in it, nearly everything in my home is new to me, my history has been wiped out more than once and I started again going forward without anything to remind me of the past. A few years ago I built what I called a memory trail, where I put memories from my past into new objects that I have around me in my home, the idea was a good one, but one with a problem just waiting to happen, I can no longer remember all the things I tried to attach to each item. I fear for the generation of photo happy youth out there, the ones who take a million pictures on their camera phones but never print them, at best store them on a hard drive or possibly a cloud somewhere. They are setting themselves up for an old age of missing memories, I can say that with ease as how many people had their childhood captured on “Cine film” or even more recently video and can no longer view it, unprinted photo’s will hold the same issues for the future, they might keep the SIM, but will they have something to read it?

For now I just keep staring those spectres in the eye and keep trying to push past them, maybe just once I will win and not just find half a step forward that there is another one blocking my way. Memories matter, they aren’t just our life, they are us, they made us, formed us and built the person now here, without them, well do we really know who we are or why we do what we are doing today.


Please read my blog from 2 years ago today – 12/01/13 – Sharpening the focus

A bit of an unexpected early start this morning so I will probably allow myself some extra time asleep this afternoon as I lost an hour, just one of those things nothing dramatic. It is actually kind of nice to be looking at the clock and seeing how far ahead of my normal timings I am……..