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…..