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……

Sorting out life but when asleep

I woke this morning to find once more that I can find no real improvement on the last week, this, what ever it is really had a hold on me and isn’t in any hurry to let go. The pain I have had now for over a week in the back of my left lung is still there, not worse but just as it has been now for several days. I suppose it is natural to find yourself more worried about the constant than the transient, but I have lived for such a long time now with the transient that anything else seems odd and note worthy. It is just over a years since I first started to notice problems with my diaphragm, to which at first the doctors didn’t listen and then thought it was my stomach. In just one year it has gone from the transient into a condition that there is no escape from at all, something that to most would seem expected but to me it totally alien. We all live by what we know, what I have known all of my adult life is the ups and downs of MS, so something that is here and always here, well it leaves me without a single coping skill to deal with it. That I suppose is one of the problems of just having one life time, by the point you have actually learned and discovered all the skills and all the tricks required to actually live, it’s over. A second would be rather useful even if it is only to allow you the chance to put them to use.

I never asked the doctor, partly because I knew he wouldn’t be able to answer, but I guess from what has happened since my diagnosis of COPD that it is the MS side of it I need to fear most. Emphysma doesn’t touch your diaphragm or your intercostal muscles both of which are very much required for the simple task of breathing, emphysema attacks the lungs themselves and is probably behind the pain in my left lung. But finding myself with little to no relief from the corseted sensation, tightest where my diaphragm is, kind of speaks for itself. I would give almost anything just to be able to sit upright without pain, or to lie down without my lungs turning into solid lumps of wood. They seem to have over taken all the other problems I have even though they haven’t gone anywhere, no matter how painful my legs and feet are, or how many spasms I get, they seem to have lessened in importance. It is strange how we all live our lives by league tables, everything is laid out in our minds from most important down to of no importance at all. As children they are always topped with friends down through our favourite toys and food, we don’t mean anything by it but all to often we forget to even mention our families as they are just there. The tables shift when we discover the opposite sex and again once we are free of school and starting to wish we could go back there to what was a simpler life. Even when there is no longer any real purpose behind them, the list still go on and split at last into reality and fantasy, topped with the things we will never have outside of our dreams. But all of them fantasy or not lessen in their importance as you age, there are still lists just smaller and somehow not so important past the few essentials of life. My league tables are now so concise it is laughable, all the wants are predictable, all the desires simple, yet it is probably the hardest list to ever be able to fulfilled as the truth is nearly all of my lists are now fantasy.

When I woke from my afternoon sleep I remember waking to find I was in rather a state of confusion, Adam had woken my when he opened the outside door coming home from work. I hadn’t meant to sleep that long, as I had once again miss set my alarm, I had been in bed for about 3 or 4 hours, waking was a process of pulling myself in to the real world with great reluctance, I don’t think I really managed that at all. Normally on waking I would have turned on my PC but I didn’t even when prompted by Adam, as I knew that I didn’t have any chance of doing anything of any worth. It took me a couple of hours to actually pull myself together and to remember that I had left a few tasks undone, even then I was still felling very confused and knew there were still others lurking somewhere in my mind. I had actually been woken by a phone call an hour or so before Adam came home, to let me know that my prescription was ready to be collected, it was once again Adams prompt that reminded me of it, but too late to actually be of any use. The whole evening was a muddle for me, nothing felt right although there was nothing different from any other evening, yet I wasn’t really there almost as though I was still half asleep. It is something that has been happening a lot but last night I never woke up properly and going back to bed resulted in not remembering at all any of the process of going to sleep. I remember Adam tucking me into bed and saying goodnight, but that was where the day ended, no time of just lying there slipping into sleep, sleep arrived before I heard the door close properly.

All to often I find I feel not quite here, it’s not a feeling that comes from my meds, I know that feeling that is always a numbness surrounding my mind, no this is different, this feels more natural if that makes sense. When your body does something to you, it is so different from a drug forming the effect and the longer you live with them in your system the more you can tell them apart. Fatigue brings on sleep, but it also brings on a different reality that tricks you into feeling still asleep when actually awake and you can’t escape it, you just have to keep going until you lie down again.