Life vigil

Last night I lay in bed, totally locked into listening to my own body and the strange sensations and noises I had suddenly become aware of. Yes, I did say noises, I don’t think I had been in bed more than a couple of minutes, I had had long enough to sort out my pillows so they cradled my head in a position that means it doesn’t really move around and my hair was untucked from both me and the bedding and was lain out over the headrest and even Adams side of the bed. With my hair now well down past my waist and verging on being long enough to catch when I sit down, if I left it anywhere else, although I don’t seem to move at all once asleep, I fear waking up as I did as a child, totally tied up in it. These days it doesn’t seem to move from where I have spread it out when I went to bed the night before, even to the point that I don’t even normally need to brush it when I wake, as it is still brushed and unknotted from the day before. Once I was sure I had also eliminated every possible point where cold air might enter the bed, I was then settled enough to go to sleep. I wasn’t far from drifting off when I felt and heard something, there was a clear drawing rattling sensation in my left lung, something I haven’t felt before. The closest I can get to it, as there is vaguely similarity to my last bout of bronchitis, which was at least 8 years ago, but this was in a different place and I never remember being able to hear it before. Each breath in, set off a vibration through my lung and the sound of if it drawing, a low pitched bubbling, I did my best to clear it by coughing, but as soon as I lay still again it returned. It was in the top half of my left lung almost central in every way and no matter what I did, it didn’t clear even for a second. On the good side, once I decided to just leave it alone, listening to the gentle bubbling and clicking held my mind focused, just as all those relaxation techniques do and I slipped into sleep. When I first woke I had totally forgotten about it, nothing new there then, but about half an hour ago, there it was, as clear as last night and just as audible, strangely my lungs still don’t feel congested in any way. Like a lot of people I have had a range of chest infections including pneumonia and asthma as well, but never have I felt or heard anything like it. I guess my body has become a little bored and that it thinks it’s time to come up with something new for me to wonder about and search out the reasons behind it. Odd is something my body does seem to specialise in, as I honestly don’t feel ill, well no worse than normal, it is just this odd sensation and sound, which of course has just stopped again.

I sometimes wonder if listening to my body is actually a good thing any longer, yes when it comes to it telling me to stop and so on, but my nightly routine is to now lie as motionless as I can and literally listen and pay attention to anything that I might hear or feel. It is amazing just what you discover when you truly do listen and feel what is happening at that second in your own body. I started it as I found that I was becoming aware of odd things that I honestly couldn’t say were normal or not, I had paid so little attention to what my body had been telling me for years, well you do once you have been brain washed into believing you aren’t ill, just nuts. I had become quite skilled at covering all that pain and fatigue up, I had stopped worrying and complaining about not being able to see, or being able to do those fiddly jobs as my hands just didn’t want to comply. My memory had become a bad joke, not only for me but those around me and I had created my own version of normal, the one that meant I had to act my way through almost every day. I don’t know how long it was after I was diagnosed, but it was within the first year, I realised that I had become so good at putting on a front, that I was even being fooled by it myself and I no longer truly knew just how every part of me felt and was reacting to my PRMS. I decided that I had to start paying attention, not just to the everyday things, but the more subtle and hidden things as well. If I was going to understand any of it, I had to find a baseline from where I could start to track and explain to myself just how bad things were and how they were changing over time. So I started to listen to my body, to take time not just when I was in bed, but through out the day at different points. I didn’t have a tight set routine to it, other than bed time, the day time listening was more about reactions, like did climbing that flight of stairs change anything, or was sitting at my PC for 5 hours without a break and issue. I suppose in many ways what I was really doing was reconnecting and getting to know the physical me. I honestly believe that more of us, ill or not, should make a plan to do the same, especially these days when most of us don’t even take time out to eat or rest any longer, racing through life means we disconnect with so many things and really do risk something serious sneaking up on us, just because we don’t know ourselves.

I built up a picture that has served me well over those years, as I could say with confidence that something was new, or that I thought it part of my PRMS or not, as I had built up a knowledge of the sort of things it did and didn’t do. I never thought I would be saying this, but I am honestly now wondering if I have become over skilled about it and if some of the things I notice these days are things that just don’t matter at all in the bigger picture. My health is now at a point where there is no way back from any of it, clearly none of my PRMS could ever be reversed, but what I mean is there is nothing more the doctors can do for me, other than keep me comfortable. Pain is one thing that doesn’t need listening for, it is extremely good at making itself heard without me going looking for it, even then they don’t always help, for example my gallstones that are still happily tucked up inside me. The things I discover when I listen or look for them don’t change anything any longer, I no longer have to report in to doctors waiting to receive my annual report, but they served me well in the past. These days I may not need to listen daily any longer as these days what I find is nothing more than another part of the jig saw that makes up me life, but it was my vigils that found both my COPD and gallstones, a long time before either where causing me a problem and meant I could say with confidence what my symptoms were, where they were and how long they had been there. On those occasions well it was just more pills, higher levels of painkillers and two additions to my list, but either I suppose could have been more serious. I suppose that is the point, I knew my body well enough to be able to say, this isn’t right, this is different, tell me what it is.

I started this with the thought that I was going to stop my nightly vigil and have ended it by talking myself into sticking with it, maybe, just maybe it has a value to serve in every life, even those like mine.

Read my blog from 2 years ago today – 14/12/12 – Irritations

Last night I actually managed to stay up until 10 pm, it was the first time for weeks, I’m not sure what made the difference but I was really glad for once to not be running away and leaving Adam just sitting there by himself. The simplest things make you feel guilty when it is out of your control……

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