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……

Does it matter?

You would think that a pain that started 35 years ago would by now have lessened and turned into something that I would by able to remember without shedding tears, it appears not. Yesterday was my sons Jeffery’s birthdayJeffery’s birthday, I made a point when I was writing my post to not mention it, as I was too busy telling myself off for the tears I had quietly already shed. Then last night we were watching “Eastenders”, one of the main characters had died and her father was talking about how he remembered the day she was born, well that was it, the tears flowed. I have always made a point of taking the 21st of work, just for that reason, it is a day when without warning and with very little needed to trigger all the pain of his life and the tears appear, regardless how hard I try to hold them back. I think from that point on until I fell asleep, the odd tear was always waiting to fall. Every year I tell myself this is the year, this is the point in time that I will be able to remember with a loving smile and a warmth that I felt when holding him, not just pain of the worst 2 weeks of my life, but even this morning there is that raw feeling as thought every little bit of it is open again and I once more need to heal for the rest of this year.

It is strange how we can so simply forget those things that made a particular day feel wonderful, or the joy of an event becomes dulled and somehow lost in the swirl of life, but those things that hurt us, the things that destroy us are always there crystal clear, they are beacons that shed no light and devour all that is good around them. Two weeks out of 53 years, but two weeks that I feel still as though I remember every single second.

It doesn’t take a genius to know that being pulled back in time, makes you think about other things that fit around that event, once begun the memories keep coming and the strange things appear that you just can’t place or remember with any clarity. I remember with warmth the house we lived in at the time he was born, it was a ground floor cottage flat, that although the back bedroom was so damp you could sweep the water across it with your hand, which meant from the day we moved there it was never used, it was a home I totally loved. In my mind, I can walk around that house and see not just the layout, but the colours and positions of the things that made it our home. Despite the fact it was the late 70’s when we moved there, it still had a coal fire that ran the central heating which if possible, I would have in my home today, despite the work it caused daily, between lighting, banking, and cleaning, it cause dust that meant the house was always being cleaned. I also remember having just a twin tub washing machine, for those who don’t know what that is, there was one side where you washed everything, then you lifted the wet washing it into the other side where it was spun out, not plumbed in, but filled and emptied from the kitchen sink. At times, it seemed as thought it was always running trying to keep up with the boiling of Teressa’s nappies, but it was a happy home, with a big garden. A tiny home that was filled not just with us and our belongings but also pets, hamsters, mice, gerbils, guinea pigs, that made me throw up when I was pregnant and cats, several cats, not all mine they just would arrive. All of us crushed into a space smaller than we live in now, but there always seemed to be room for more. I don’t remember ever spending a single day on my own in that house, everyday friends would call for coffee, or even stayed for dinner, I remember their faces, their names and the things we laughed at and did. My memories of that time seem clear, to clear for some of them as many also held pain. What I don’t understand is why my two homes that followed that one, each become vaguer.

Although I remember the layout, the only two rooms I am sure of are the living room and kitchen, the rest have only small points, objects that I remember not the room as such, it was our first real house, semi-detached and horrid on the outside, Plymouth again has a feeling of happiness to start with, but something went wrong and it all slipped from there. Now I am sure that it was my first bad relapse but at the time, well I had no idea, only that life was out of control and I had lost hold of all of it. Why that should take away my memories of the house I don’t know, but they are vague and fuzzing outside those two rooms. Even worse is my memory of Rhu, there is one whole room there, that although I know it existed, I haven’t the slightest idea what was in it, or what it was used for if anything at all. As for the rest of the house, only the living room is clear, it is almost as thought as our homes became bigger, the less and less I remember, as if I am for some reason shutting out its very existence. I know my memory is more than questionable these days, but to loose a memory of a place you lived for years, somehow just doesn’t feel right and just doesn’t fit, especially when it is the more recent ones that I have lost.

I kept going yesterday, moving forward all the time, each home after the other and each one holds gaps that I know are there, just like the room in Rhu, it’s there, but without any detail. Mostly it is people that I have lost, as all my homes after that until I met Adam where flat shares, I can’t even see their faces in most cases, just the knowledge that I was never alone. Try as I might I can’t remember my friends either, some of them even came to our wedding but I can’t remember their names, just some of their faces. When I found out that my memory was affected by my MS, I always thought that it was going to be my short term memory that was going to be the greatest problem, the going into a room without remember what I was there for, but as time goes on I now know there is much more to it. I don’t understand how it works or how it picks out what it is going to blank and what is going to stay with me, but as I find those blanks, they seem to become more scary by the minute. I know that everything I have listed today isn’t important on the grand scale, but as I found each blank it is like staring into an abyss, what is going to vanish next, will it be yesterday that I loose, or the rest of what remains of my childhood. Will it happen today, tomorrow or next year? yesterday pulled me back, because of one memory, on very precious memory, will that one day go to? Suddenly it all has a different light to it and it’s one that is blacker than black.

 

Please read my blog from 2 years ago today – 23/04/12 – Food? No thank you

Last night we decide to have a Chinese ‘Take Away’ for dinner as an early celebration of a couple of events later this week, I am still paying for it. I really to be very truthful wish I hadn’t eaten it at all, it was lovely and no I don’t have food poisoning but I am paying. I’ve know for years that my body doesn’t react well to large quantities of food and added to the recent shut down of my gut I really was just asking for the results I got. I ordered a portion of Spare ribs with a bag of prawn crackers to enjoy the remaining sauce with. That should have been it but I was greedy and ordered a King Prawn Satay to follow. We know this ‘Take Away’ well and I knew exactly what would arrive. My plan was to only pick out the prawns from the satay hoping that the quantity would…..

PC, what PC?

I am getting so far ahead of myself, telling myself every few minutes that that is it I have everything back in place, a few minutes later I find once more I’m not. At this minute my beloved PC is only partially working as it should, there is still so much more to do and I just want it done. The last few days have been total hell, I really am not up to this IT stuff any longer. Lets face it if you can’t remember one simple password, one you have typed in several time a day for several years, well what hope have you. I spent most of Wednesday being conned by a company that wanted to skim £167 off me, they thought I was totally green behind my ears and when I told them I have the windows 7 software and all I wanted was for some one to do the work correctly bring my PC but to or as close as possible to what it should be, they said the price would be the same, in other words they made their money off the software not the work. I then did the sensible thing and I called Dell, and hour and half talking to a really nice guy called Ivan who helped me step by step through the system to get the basics done and all for absolutely nothing, no premium rate call charges either, I was well on the way back to actually being able to log in so I could fix everything else.

It was when I was speaking to Ivan that I came up against my memory for the millionth time that day, I had to give him 2 email addresses as I wasn’t even sure about that, when I couldn’t see then to check, I managed to give him two that don’t actually exist. So where all the notes he kept telling me he was sending to help me with the rest of it have gone and I am too embarrassed to phone him again. I do still have loads to do but much of it is waiting for all the updates to download and install, so there is time to type as well. I don’t suppose that it comes as any surprise at all that I am running on low, well even lower at that at several points, it is all taking a lot out of me. I know that I have physically done nothing out of the normal, other than a few trips back and forward between this PC and Adams laptop, but the mental stress levels have been sky high so I guess I am possibly faced with one hell of a crash when it is all complete. Already I ache all over my entire body at a level far higher than normal, making my mind work on jobs it hasn’t even thought about for the last 5years, is hard. It is amazing how much you can find missing when you start looking for it, it actually took several hours just to get the right password for that essential email account, life became slightly less stressed after that as I knew I had a good chance of restoring it all in time. That is the one thing I forgot, that it is still going to take more time. I really got ahead of myself yesterday, flying onto twitter, Facebook and here saying normal service would start again today. Normal will take longer, but there will be something at least! At this moment I just wish there was a magic wand or a little guy who could finish all off for me while I sleep.

I know I have skimmed over most of this but the most difficult part of the last couple of days has been having to accept that I can’t manage to do even on simple task once and have it done, I have redone and redone everything as I keep screwing things up. Just remembering the route I used a few minutes before because I need to redo it, failed again and again. There is no way that I would be able to hold down a job, any company would have sacked me a million time this week. When you can’t think or find the reason for something it all becomes harder and harder, because of the stress level rise you also become tireder quicker and that too makes it more difficult. As an ex manager I would give me a job, not even on that is simple and repetitive as I would still be asking every few minute, “what comes next”. In my one little bubble well that is excusable, no one not even me is paying me to do this, but in the outside world I would be treated as an idiot. I have known for a long time that I have been loosing it, that I am not up to dealing with life in the fashion I used to, that I can’t even hold conversations and so on, but this has all just been confirmed a million times. I don’t have a brain, just a mushed up mess with the odd bit left that functions occasionally.

At least today I will be sitting all day long and I have already set myself the achievable task of doing what I can, not what I want to. There will be something online for everyone, just not as much as they are used to. Most of all I am listening again to what my body wants, not what my mad hyper-speed mush thinks it wants. If that means I need to lie down, I will lie down, these things are sent to try us and believe me they are.

Gaps prove the lose

I wish more than anything that I had a tool that would record my thoughts as I cross over into sleep. I know without any doubt that every night I write in my mind the most beautiful and most profound statements, so far above those I actually write here. Before someone suggests that I take a note pad with me and writing the best of them down, well that would mean pulling myself back to awake, somewhere I’m really happy to not be at that point in my day. Strangely although I don’t remember them well enough to write them in the morning, I know with no doubt that they existed in my thoughts clear, precise and so elegant in their phrasing that I repeat them over and over again, trying to etch them on my mind and 99% of the time, they vanish, or at the least leave an incomplete shadow that won’t pull the original back into focus. Writing can at times really be a trial as I want so much to be able to say everything clearly and in ways that no one can fail to not just understand but feel. Sometime I know I do but at others, well even I reread and sit here wondering what was behind those strange words.

Descriptive writing and words are the core of what I require for what I do here, but although I am putting down words that to me describe it clearly, to another it may make no sense at all. Take something as simple as a headache and ask 10 people to describe one and you will find so many different words being used for the exact same thing. Even levels of pain fall into the same strange hole of personal opinion, your level 10 pain and mine may be miles apart, level 10 is supposed to be the worst pain there is, but you and I have in our lives not experienced the same pains on which to base this, a child might think they are dieing when they break an arm, but there are far worse pains ahead of them in life. At night though, I often do come up with those gems, the phrases I have such belief in that I at the time I have no doubt I will remember, it is perfect, how could I not. Last night I know was one of those nights, I was lain there as always on my back with my hands far enough away from my body so they can’t twitch and wake me, all I described the other day about having to control my breathing, as that gave me control of the discomfort around my ribs and down a few inches below them. The side effect of that is well known, that process of measuring each breath and being fixed on their length and depth, helps you to go to sleep, as I was counting them through I suddenly also knew that I could explain that sensation that causes so much discomfort, I just wish I could remember it right now.

I know that I loose millions of thoughts through out everyday, and I have no way of capturing them, some are for right here in my blog, other are things I want to talk to Adam about. They form, I adjust them, add to them and polish them, ready to be never ever used as once perfect they are gone. Even what I write about here vanishes, it may be half an hour after writing that I schedule the tweets to go with it, but I haven’t the slightest idea what I wrote about and have to come back and read it to find out, but this is the exception to the rule, here there is a record. These losses in many ways aren’t important but the more they happen, the more they are becoming important to me. It isn’t the forgetting that is getting me twisted and distressed, it is the fact I had something clearly important enough for time to go into it, for suddenly all record of my words to be gone, wasted, lost for ever. There is this strong feeling within me that I have so much to say, to so many different people and with my mind discarding things constantly, my chance of ever being able to do all I thought there was time ahead of me to do, is also vanishing. I have no idea as does anyone else how many years of life I have still to live, but those years don’t matter, what matters is how many years I have with a brain that functions well enough to fulfill the things I need to, not just for others but for myself.

I can live easily finding myself in a room with no idea why I am there, but finding myself looking inside constantly for all those things that have vanished into some tiny corner of my mind or vanished completely, well that is so much harder. Through out my diagnosed years I have said the same thing over and over to anyone that will listen, my body can betray me in anyway it chooses, I will find a way of managing, but my mind betraying me, is not bearable in any way at all. Slowly it is built up to a point where I am loosing almost as much as I create, I also know that some of you will be wondering how if I can’t remember how do I know it is missing. That’s simple, I can look a back over any day and know what I was doing, my scheduled tell me that, timings tell me if I was distracted, and distraction usually means thoughts. Before sleep both afternoon and night there is always a space for thought, if I can’t remember what they were they have to have vanished. Add on the feeling of exuberance in knowing I have something great, well the exuberance remains as a shadow, a knowledge of something great but the great thing is missing. Every time it happens I know I have lost something, maybe more important to me than to anyone else but it kind of hurts. I think it hurts because I know that it means I am loosing that bit of control, I have enough things in my life that are out of my control, but this one is growing faster than the rest at the moment and I simply don’t like it.