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……

Keep me vertical

I woke this morning just after 6am and totally frozen, it didn’t take me long to find out why. I was lying as always on my back but without any covers over me, one foot on the floor and my eye mask missing. It was a position that had me confused at first, then the fact that I had woken a 4:30 am needing to go the loo, slowly formed in my head. I remembered getting ready to get out of bed, even taking the covers off me but then nothing. I have known for a while now that I had the ability to fall asleep in seconds and that tiredness was really pulling on me badly, but to have done so whilst in the middle of getting up, well that one is my own personal best. For the last few weeks now I have been pushing through each day with the feeling of wanting to go to sleep and with that almost overpowering feeling that if I were just to lie down, I would be gone in seconds. It has been worse this week for some reason and even now my head has that heavy feeling and my mind somewhat distant and fuzzed, not drugged, just not quite there. The other day I wrote about how if I even sit totally still, my body starts to shut down, disappearing into a pre-sleep state. I just didn’t realise that it was actually that real and not just a feeling or sensation. When I did go back to bed this morning after already having over 9 hrs sleep, I was once again gone in seconds. Just a few months ago, I wouldn’t have even bothered going back to bed knowing that the alarm would be sounding in around an hour, I would have just stayed up and started my day.

I don’t know where my ability to go to sleep with such ease came from, even years ago I always seemed to fall asleep with more ease than those around me. Nothing like recently, but generally quicker than anyone I have ever shared a bedroom with. I guess that along with my habit of getting up whenever I first wake, even if that was 3am, is partly what is behind my lack of ability to remember dreams has come from. Most dreams are remembered in that half-world, the times when you aren’t fully asleep and before reality becomes just a memory. It is that lack of time spent in dreamland that I think was behind my total dislike and disturbance I felt from the vivid dreams that were being caused by my taking my booster pills with freedom, rather than absolute need. Last night was a perfect example, I remember nothing other than tucking the covers around myself when I got into bed, getting comfy and my waking points. If science is right, I must dream otherwise I would be not just a little nuts but totally insane. Either way, I am glad that sleep is something that I have mastered as it is truly my greatest escape. I guess though it is also wrapped up in my fear of pain, as although it doesn’t happen a lot, I do already often wake in pain during the night. I know sleep is vital to my ability to function, the idea that I could loose hours of sleep, which I know makes my pain worse, is behind much of that fear I spoke about yesterday.

Of all the things that I know my body needs, sleep was never one of them until the last five or so years. Up until then it was something I had to do a few hours of, a very few hours of and was more an annoyance than a joy. I know that my health has changed my relationship with so many things other than just people, but sleep has to be the biggest one. I now crave it more than I do food, even my favourite ones have slipped into a bracket of nice but not essential. I even think if I was given the option of a cigarette or one good hours sleep, I would choose the sleep and that is a huge thing for me to say. All that said, I am now finding myself at a point that feels alien, as I can feel that need closing in on me and wanting to take even more out of those basic 24 hours. I was content to let it past the 12-hour point as I still felt that I had enough hours in my day to still call it a day. But the idea of letting it now take even more is just wrong. I am fighting to hold onto those precious minutes and I am at the moment honestly talking about minutes. Each evening we sit and we watch TV together, at 9pm I say good night and head into sleep again. Recently, I have found myself getting up before the program is finished, you know at that point when you know the story is over for that show, about five minutes before the credits. I am rushing off to get ready to bed, in the hope that 9pm will find me actually asleep. Minutes shouldn’t make a difference, but they are suddenly vital, those minutes might be just enough for me to not give into going to bed at 8:30 or earlier, or possibly getting up later. I am trimming minutes here and there, trying to find spare ones that I can shift around to give me more real-time.

On a good day, I have 11 hours, on a bad maybe 10 sometimes less, any less than that isn’t a day, it a happening between sleep patterns. But then you have to throw onto those scales that even though I may not be in bed, how far from sleep is my body at any time when given the space, it starts to shut down and sleep whilst I’m still physically up. It’s a quandary that I keep pushing aside, something that I keep telling myself is off in the distance and will sort itself out without my worrying about it. But that’s just it, it seems to be sorting itself out and I don’t like it. Who on this planet falls asleep while getting up to go to the loo? I thought that rest and relaxation would make a difference, spending more time doing silly things like playing PC games or surfing the web. So I tested it, I cut back on this and that and made space to relax, the result, still here feeling tired and feeling that sleep is one horizontal position away. I don’t want to give up my day, to cut into it any further, I don’t want to be beaten by something so simple as sleep.

Read my blog from 2 years ago today – 7/06/13 – Trying to find relief

The temperature didn’t give in at all yesterday, despite trying many different ways of staying cool I found little relief from it. I did find one thing that has made a huge difference to cutting the sweat from pouring of me and I feel totally stupid for not thinking of it before. As you know I have a great deal of pain from just sitting, well the cushion I have which gives…..

Staying upright

Just before I woke from my afternoon nap, strangely I remember dreaming, I know we all dream but I don’t normally remember them. I was back at work, in the office and feeling so ill that I was about to take time off, nothing odd you might think in that, well there is, I never took one single day off work unless I was physically in hospital, for the whole 13 years I worked for my last company. When I woke, guess what I felt terrible, but that is actually how I have been feeling for the last few days, I guess my brain was screaming at me in the only way it could to tell me to stop and just accept things aren’t as good as they could be. When you are ill and live your life on a graduated scale that starts at where most would say things are bad and just gets worse, it is hard to accept that there are still spells that come along when your body is screaming at you and you actually do have to listen. It is so easy to just keep going as you still have this stupid voice in your head that sarcastically say “well what is the worst thing that can happen, I could make myself ill”. I knew yesterday morning when I woke up so tired that walking was an interesting experience, that I had already been pushing myself beyond where I should have slowed down days ago. Having spent nearly all of my life working on and doing what everyone else did, because no one could tell me what was wrong, means that I really don’t find it easy to slow down, I still have that sarcastic voice mocking me over and over and telling me to just get on with it, as what other real choice is there. These days, well I don’t really do that much in comparison to the past but like most things it is all relevant, I can still do too much, just as I used to. Too much these days is just spending too long writing, or trying to come up with new tweets, in the past it might have been coming home from work and starting to spring clean the kitchen, as I said all relevant. Learning, remembering and actually doing what you should, never gets any easier, in fact, I would say it gets harder as I already feel somewhat pathetic over how little I can actually do these days.

Your brain never quite gets used to the changes you are forced to make to your everyday life, regardless of how slowly those changes happen, they are always too fast. The only gauge you have is to pay attention to just how tired you are feeling and how intense the muscle fatigue is, yes that gnawing pain does have a purpose other than making us miserable, it is a measure that you have to listen to as if you don’t slow down or stop, trust me it will find a way of making you. This morning there isn’t a single part of me that isn’t complaining, so today and for the next few days, I am going to have to accept that I need to slow down and I need to do what I haven’t been for the last week or so, making sure that I go to bed at the right time, those 5 to 15 minute extensions that have been happening, have to stop as does clipping a few minutes here or there off my afternoon nap. I know it sounds like such a tiny thing, it is only a few minutes, what harm can they really do, but to me they make a world of difference. Yes, life does get petty and picky but that is just the way PRMS has made it and I can’t full around with it any longer, it always wins.

When Adam is at home there is always a cable that runs from under the settee in front of my desk to the coffee table, it is the LAN for his laptop, no I won’t have WIFI, but it is something that Adam is paranoid about and he is constantly reminding me that it is there, just in case I trip over it. It isn’t actually a true trip danger, as the cable is meters in length and even when I do catch my foot in it there isn’t the slightest chance that it could cause me to fall as the cable moves freely with me, but this doesn’t stop him from reminding me every time I stand up that it is there. Yesterday despite all of that I caught my foot in it and as it does it simply settled on my ankle and I stopped to release it, without any damage to myself or anything in the room, as I said no real trip hazard. It wasn’t until I was in the kitchen that I realized that although I have explained it isn’t a real danger, I hadn’t explained why him constantly telling me it is there is totally irrelevant to everything. As mad as it sound, I have developed the ability to fall over, trip over or into, things that I not only know are there but I can actually see, it seems to have nothing to do with what so ever my brain is aware of, if my body or my brain are going to do something stupid, they will. I discovered it a few years ago when I cut myself on something that I was looking at, aware of and even mentally trying not to harm myself on, then I did. In that case, it was a sudden spasm in my hand that caused the problem and to be fair, most accidents I have are due more to my body than my brain, although occasionally it does feel like some kind of conspiracy. On the odd occasion that I have caught my foot on the cable it has been because my foot has dropped, something it does a lot, it’s almost as though the muscles give up and can’t hold it clear of the floor as it should, at it’s worst I have heard and felt it drag across the floor which when you brain has given the correct message, comes as a bit of a shock. I will admit there are occasions that I forget things, I’m not stupid enough to trust my brain, but I knew the cable was there yesterday, I hadn’t forgotten.

It’s hard to accept that both your body and brain are out to get you, that if one gets it right, the other will do it’s damnedest to get it wrong, in truth, it’s surprising more things don’t go wrong. I know without a doubt that living in a flat that is overfilled with furniture actually works to my advantage on that one. Big open spaces are my danger areas, the reason you will see many people with any form of MS walking close to walls, we love walls, they stop us from falling, as does furniture you can hold onto or fall into. Combine pure balance, bad memory, poor eyesight and spasms and you have the perfect recipe for things going wrong, probably the reason my body discovered fatigue as it keeps me sat on my backside and safe. Joking aside, I have managed to be housebound for 8 years without breaking a single bone or cutting myself that badly that I have needed medical attention, in my book, that pretty good odds when it comes to the future even if that future is only ever counted as today.


Please read my blog from 2 years ago today – 1/03/13 – Admissions

I had no excuse last night but I once again retreated to my horizontal heaven at about 8:20, Adam was in the kitchen washing the glasses that had piled up, I won’t put them in the dishwasher as it seems to destroy them regardless what they claim on the packet. I knew he would be there for about another half hour, so I took…..