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……

A trick of the mind

Recently I have been posting pictures of wonderful landscapes and sights on twitter and Facebook, the kind of places that all too often just seem to have stepped out of our imaginations and are suddenly there in front of us. Some I have selected as I just knew they would be the sights others would enjoy but most are sights I enjoy, places I wish had been here in Scotland so that I could have seen them, places that all seem to have a moody and mystic feel to them, the places that somehow I see myself in. Travel has always been something I just wasn’t interested in, after several horrid childhood holidays abroad, where all I wanted was to go home, I have never left the UK again. My first marriage found me living all over the country, but it wasn’t until we moved to Rhu that I started to feel as though I was in a place that felt like home, maybe that had something to do with me finding the strength to walk away from what was a destructive relationship, in every meaning of the word. I spent many hours walking over the mountains and shoreline, hours of thinking in places that seemed somehow to make me feel good, feel strong and feel able to do anything. It is one thing that I honestly believe and that is we all have places, that makes us feel safe and secure, not in the way your home or your bed does, but safe in the bigger picture of the world, for me that has always been and always will be Scotland. As much as the mountains are beautiful and the castles majestic, it is the sea that holds me, the sea that makes me feel connected if that is possible to everything that ever existed.

I have spent far more time than I really should have in the last couple of weeks just looking a pure beauty in the form of pictures, the most beautiful are always those that don’t have bright sunshine or everything perfectly arranged, they are the places where man hasn’t been able to destroy. It is odd to find after so many years of trying to make everything around me perfect that I actually find the wild, the disorganised and the purely natural are the places I feel most at home in. They say that it is never too late to learn anything, even things about yourself, but in my case, they couldn’t be more wrong if they tried. Even if I could get out of this house and into a car, I still would never be where I want to be, as no car can go where there is no sign of humans, as it is one in itself. For me, a discovery of a need to be in the wild places has arrived too late, simply because when I could have made those journeys, I didn’t know most of them even existed. I have said it before, but this generation growing up now are so lucky, the world is there for them to explore and find what is right for them before they go anywhere, they are not restricted to believing what they are taught and been shown is the only way to live.

Chronic illness can be so frustrating, not just because of all the things you can’t do, but it seems to love find and showing you more and more things that you can’t ever do, just to make it that bit tougher. Looking at a picture of a wild sea isn’t anything like stand there with the wind and spray in your hair, any more than remembering what it is like to run is anything like the waddle and shuffle your legs can achieve now. I don’t often think about what I can’t do unless I am forced to, or a situation arrives when I need a certain skill and it just isn’t there anymore. It hasn’t been a logically thought out or devised plan, more a case of self-preservation that my mind has created all on its own and has stopped me from looking back in that way. I spend a lot of time remembering things, but I am not aware of thinking about what I was doing in that situation, I might be thinking about a great night in a club when I was DJing, but I don’t think about the fact I was always dancing to, my motion, or actions seem to have faded if that makes sense. I can see myself in any situation that I have been in, but I am now motionless, or if moving I glide rather than physically using my body, watching not doing. It feels as though my past is now a film that I watch, without me actually ever being part of it.

I guess that we are more complex than we can ever imagine, that our own minds can deal with all those things that we thought would destroy us far better than we give it credit for. Just like when someone dies and you believe that you will never take another breath as your entire self is in so much pain that life feels impossible, but yet you do go on, your mind heals that pain until it is at a level you can deal with and still live. I never once thought that living in a housebound world would actually feel normal and acceptable, but here I am, alive, still living from day to day and not yearning for, or missing all the things I thought I would. Strangely I miss the things I never had, but that could happen to anyone, disabled or able-bodied, maybe we should all give ourselves more credit for being able to cope with what we think we can’t. The human brain really is amazing, it really is there to protect us and if we just let it do its job, well we can adapt to anything. I suppose if there is one thing history can teach us about ourselves and that is we always survive, as long as our heart continues to beat, we continue to be and we can always make the best of anything. Just think of those who made it through concentration camps, or imprisonment by the Japanese during WW2, they got through it and most went on to have full good lives. Nothing is forgotten just dealt with and eventually held where their futures were protected from it. It is nothing like nearly as extreme, but I think it is similar to what my brain has done in taken away all that could pull me down and now letting me only see my life in a way that allows me to go on, to be happy and to be able to cope. Yes, I can override it’s chosen view, I can make myself remember every detail if I choose, but what would that achieve other than pain I don’t need. Sometimes in life, it is better to accept things just as they are, especially if that acceptance isn’t hurting anyone and is allowing you to be able to keep living and to keep being happy.


Please read my blog from 2 years ago today – 01/05/12 – Agent No.7

I found myself today following what I call my memory trail, not all of the thing on this trail are real items that belong to the memories, but object that in my mind I have used to mark those times. Those of you who have read the bulk of my blog will know about the reasons for the trail but briefly for those who haven’t, I set the trail up as a way to test and store memories, things that I don’t want ever to forget, but due to my MS I have a high chance of losing. When I knew what my future held and I had seen for myself the beginning of gaps that were difficult to access, I decided to try and beat it at its own game, giving me a way to hopefully always remember. The journey today was not a planned one but completely accidental. I am reasonably fogged in today and holding my thoughts in one place is proving difficult to do. I do have some tricks……