I have a good feeling about today, I may be ahead of myself and time will tell, but I have actually been to the loo, not a fraction of the several weeks that is still hiding inside me, but maybe enough for a couple of days of it, it didn’t leave easily, but it was painlessly. I don’t think I have ever been so pleased over something that is meant to be an everyday action for years, but I know well enough not to get my hopes up as I did a last week, all I can do right now is continue to wait.
Since Adam has rejoined me in sleeping with me in our bed, he has been telling me that he can tell if I am in pain or not whilst I am asleep, just as I have known for a long time if things are good, I do a wonderful impression of being a plank layed beside him, I don’t move at all. On bad nights, my body may not move much, but he says that he can actually feel my muscles going into spasm as I twitch or jump, making it hard for him to go back to sleep, as I will be motionless for a few moments, then it happens again and again. The one thing though that neither of us could work out why was the fact that he can hear me sometimes doing what sounds like me brushing my hands back and forwards across the sheets or actually claw at them. When I went for my nap yesterday, just as I was about to go to sleep but I still just aware of the world, my left hand suddenly jumped across the bed from where I had put it, a couple of inches from my body, I felt what I can only describe as bit by bit my hand unsticking from the mattress, then suddenly it slid across to touch me then flew back. There was a clear brushing sound as it moved over the sheets as the palm of my hand slid towards me, on the return the noise seemed louder, possibly because I was woken slightly by it, or that the hand is once more flattened to the surface, both actions happened without any conscious thought or action. I sleep with my hands away from me as when my hands are actually touching me it causes pain, I can’t work out what the reason is, but pain in both my hand and the area it is touching, is something I don’t need whilst going to sleep. When almost the same thing happened after I went to the loo during the night, but this time it was my right hand that started to move and as it is closer to the edge of the bed, I found my nails clinging to the edge of the mattress so the hand never actually touched me. Clearly the pain that my hands being against me is seared into my mind so well that even my subconscious makes me react in my sleep so that and won’t let them actually touch me either. When I told Adam this morning, he also answered another question that didn’t make any sense to me, how I have recently managed in my sleep to break two of my nails, grasping tightly with very long nails usually does bend them slightly, grasp too tight and they break, pain has a lot to answer for.
It always surprises me the way that our minds protect us whilst we are asleep and apparently not aware of anything that is happening around us. Even the fact that I sleep on my back was something that I didn’t consciously choose in the beginning, it began because of a period where lying on my side was becoming uncomfortable, but I still went to sleep there, turning reasonably soon after finding sleep, but it wasn’t long after that, that I realized that I wasn’t moving or rolling at all during the night. I laid out trap after trap, things that I was sure would show that I had shifted, even if only slightly, but every single one just showed me that I was quite clearly not moving a single muscle other than those to keep me alive. Once again, my subconscious had learned the lesson and wasn’t going to let me do anything that was going to cause me pain. These days I still lie on my back and I can no longer roll over, even in the mornings I now have to shuffle around on the bed until both my feet are on the floor and pull myself up from there as I quite simply can’t roll even enough on the soft surface of the mattress to get up any other way. I guess that could be why I now trust myself enough to never turn lights on any longer, I can navigate our home perfectly well without having to be able to see, right down to fetching a glass, pouring a coke, finding and lighting a cigarette from the stove, all done frequently at night without light. My trust levels in my mind knowing everything without having to be taught, has grown and grown in the last few years and it isn’t just in the practical. I trust it to also keep me safe from my illness as well, what I mean by that is, I have learned how to know what matters and what doesn’t, the other night when Adam thought I would have been dialing 999 was a good example, yes I had it in my head, was I having an appendicitis, but it there was a far louder voice telling me it will pass, do what you need to, but it will pass and as I have done on a million occasions, I correctly trusted it.
Whether it is my conscious thought or my subconscious, chronic illness has changed me from a wimp who couldn’t deal with pain, into someone who will do anything, including lying across the kitchen counters as I did the other night, just to keep myself away from yet another doctor, but only because I have learned to trust my own body. Two years ago I used to write a lot about listening to your body, well this is the next step in that process, trusting it totally. Clearly, I had a degree of trust before I started to listen, but the more I listened, the more I discovered that it normally talks a lot of sense. My health is going in only one direction and has been for a long time and nothing will change that, I don’t want to spend the bulk of the years ahead in hospital, so I have to learn to listen even more. I can see without a doubt just how easy it could be to call for assistance again and again and yes the NHS would supply it, but that isn’t the way I want to live. Our simple discovery of my newly learned night time activities has shown me that my brain will intervene even in my sleep to keep me safe, is just yet another speck of proof that what it has to say to me, is safe for me to follow and live with. The last couple of years has also taken away the slightest doubt that it really does know the difference between dangerous and just hellishly painful, now I just need to convince it to learn how to turn off the pain.
Please read my blog from 2 years ago today – 20/02/13 – Spreadsheets and fear
Yesterday took me over 2 hours longer to get through my normal writing and twitter activity and all because I can’t type or trust my fingers to be where I think they are or to do what I want them to. At first last night I thought my hands were a bit better as I wasn’t subconsciously massaging them all the time, then I realised that it was because my legs were worse than the night before and my attention was centered there…………