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……

Dealing with buisness

Well this wasn’t the start to the day I had expected. I was woken at 6:10 by Adam doing his pig impressions and gave up trying to either shut him up or of any chance of getting back to sleep, so I got up and started my day. Adam eventually got up and headed of to work and I had my breakfast, so far so good, but then the phone rang and it was one of those horrid automated things, they all seem to have on specialty, confusing me! I knew from experience that as it was Barclays and they were asking about recent transactions that someone was trying to use my card, or at least they thought they were.

I know they do their best to make these systems easy to use and to understand, but I find that my brain goes into a spin, something that it shouldn’t as I was one of the people behind a system like that, who used to record the messages and set up the system to take a caller to the right person, or to simply leave a message of some sort. I more than understand how they work and what the processes are, but with questions that don’t actually make sense to me meant I had to open my statement, making things worse as I was trying to answer the questions on the phone and to log into my account, I had to hang up on the the phone it was just too much. I checked my account at my speed and called back, they were right someone was stealing money from my account. The took £1.60 on the first, £25.80 on the 3rd and according to the phone they were trying to take another £25.80 today. The whole thing was hysterical thinking about it, as the adviser who was trying to help me, had a really broad Asian accent and I was confused before I even tried to work out what he was saying. We got there and I now have a new card on it’s way to me. I am still confused though as I only use my card to make payments to ASDA, I use it as it has this fraud protection, that means to me that ASDA’s security is questionable, rather a surprise for a company that size.

What this morning has shown me is that dealing with companies once you have a problem with communication is really hard. For about 4 years in total I worked as a call center rep and not once was I ever given training with how to handle a call from someone with speech problems. Nor when I was a Operations Manager did I bring in any training for the staff to deal with it either. We all think we know how to talk and how to communicate with someone, but it is a different skill and this morning was proof that it isn’t a universal one. I made it clear to the man at the other end I was having problems understanding as he spoke so quickly, but as most do, he didn’t just slow down, he started to shout! I have noticed that all my life that people shout when someone can’t understand a word, or their accent or even just they way they are saying something, shouting makes no difference at all, it is comprehension not hearing that is the problem.

I actually think that it shouldn’t be something that is taught by business, it should be along with a million other things, be taught by parents and schools. How we react to people can make so much difference, I witnessed from my wheelchair days that people shouted at me then, strange I know as I never thought my ears where in my legs, but apparently they are. If someone was with my they spoke to them and not to me, and always looked at me in a pitying way as thought I had lost my brain along with my mobility. Well world here is a note for the margin of your page on people, disabled doesn’t mean stupid, just different.