Do you have the answer?

I started today with a total carbon copy of yesterday, right down to the tears that blinded me as I tried to get my day started. I don’t know where these huge yawns have come from, but they even turned up after my nap yesterday, luckily it wasn’t until this morning the other thing that I normally manage to do when yawning like that happened, my jaw cracked. I hate that sound, especially when it is so close to your ear that it seems to vibrate right through you, on the good side though my body has eventually allowed me two night sleep in a row, something I need badly and I just hope that tonight will hold a third.

I really wish that there was a way of recording our thoughts when we are just lying there in bed in a state of falling asleep, I have lost count of the number or truly great posts that I have written in that state, only to find that on waking they are totally gone. More annoyingly than just being gone, is the fact that I remember running it all through my mind but what it was about, is the bit that is gone. I know we all do similar things, but I can’t help wondering how many truly great novels or poems have been lost to the world just because our brains have this annoying habit of forgetting. In fact, I would say it is even fair to go as far as to say that the world might actually be a different place if those inventions thought out at night, could actually exist. For me, lying there in that half-world between awake and sleep, writing what will never be written is essential, as it is my way of distracting myself from what my body is doing, I know that from my nap times. There is something about knowing your time asleep is limited that causes you sometimes to not sleep at all, just lying there getting more and more angry about the fact that sleep doesn’t seem to want to play the game with you. At others, it is the madness of my body that brings me back from the brink of sleep with a snap so violent that I have to start the whole process over again. Yesterday afternoon was one of them.

I was drifting beautifully, telling myself some story or other, then I was abruptly awake and totally aware that the only parts of me that I could feel where my upper body and my neck and head. Losing my limbs isn’t anything new, that along with their true location being a mystery are a common enough issue in the past year, to the extent that unless being totally amused by what my nerves are telling me, I don’t even mention it any longer, but this was different. I could feel my lower back resting on the mattress, but I couldn’t feel what should have been on top of it, the first part of my I could find was the uppermost line of my large intestine, tight and under pressure as normal, but without anything around it. Lying there with only a head, neck, shoulders, ribcage and lungs, followed by a void with one thing apparently within it, is odd to say the least. I lay there trying to work it all out but being so careful not to move as I knew that if I did, the effect would be broken, as it is only ever an effect, I guess that is why I find them so intriguing as one tiny movement and it is shattered in that area. When you first lose something like that, it is instinct that makes you move as you are terrified by the idea that it might be gone forever, but as it happens more and more, well you learn that your nerves aren’t dead at all, just not communicating the truth. Getting your head around the fact that your nerves tell you lies is something that you do quite early on in conditions like MS as they lie to us constantly. They create sensations that have no reality to them at all, no one is pouring blood down your shin, or sticking needles into your hands, any more than I was suddenly a paraplegic, who had managed to keep the top of my body somehow. That didn’t stop it feeling as though only a fraction of my physical being still existed.

Maybe it is the analyst in me or possibly the writer, but I am never happy to accept these things on face value, it is all too easy to end it and to miss the opportunity to work out what might be behind it and to feel for a few minutes what it might be like if it were a glimpse of my future. What I felt yesterday was a blown up version of how my left arm felt when it vanished for a while. I could see it and to some extent move it, but I couldn’t feel it and the tests the doctor which confirmed that there was nothing there, no reflexes, no pain felt and no ability to lift it beyond a limp flop that was of no use to anyone. Clearly the main nerve that runs down to our hands, the median nerve was dead from my elbow down, the same damage higher up would take out the entire arm, the legs just as easily, but I am stumped as to what could remove everything from the waist down apart from one small area. I came to the conclusion that I was missing one simple fact, this wasn’t reality, reality would have taken that too, this was just my body playing with me as it has done over and over again and it couldn’t override the constant area’s of pain. All of this may not seem that important, after all as I have just said, it is a game that my body has been playing with me for over a year, so what has made me write about it, as clearly there is something more in my mind, well yes there is.

I know some will say “just put it out of your mind, nothing in reality has changed so what is the point of even think about it, far less worrying about it”. That was my view point for the past year, but it is happening over bigger and bigger areas and more and more frequently. I already know that the true strength in my limbs is fading, silly things like being stuck on the floor if I am stupid enough to go down there are rather a large clue to that, along with the fact my arms won’t lift anything that is heavy any longer, drag yes, lift no. I have to say that I am not exactly worried about it, but I feel I do have to think about it and to consider what is possibly really happening. There is a clear possibility that my body is warning me of a weakness in those nerves, just as my bowels have been slowly shutting down over the years, I can’t help wondering if the nerves to my legs and arms are also slowly shutting down. If I have actually got lesions growing over them that are slowly taking away their ability to send messages. Right now, those messages only occur when I am asking nothing of my limbs, when or if it started when I was up and about then I would really worry, but I have no way of knowing if this is a warning of what lies ahead. Once again, I find myself cursing the fact that there is no true path that PRMS follows and no laid down set of clues that tell us what might or might not be happening. The only thing I can be sure of is something is happening, to lose totally every signal that tells me that I actually haven’t had all my limbs amputated, as they don’t feel numb, they feel totally gone, isn’t normal and if it is, why have I never felt it before this year?

I don’t know what is behind this or many of the things that seem to be stepping up at the minute, but stepping up they are. Since January, it has been one thing after another showing itself more and more, first was clearly my bowels, then for me it is the tiredness and the pain, then my bladder either not wanting to empty, or not seeming to need emptying when it is full. My diaphragm being in constant spasm, the increase in my intercostal spasms and the clear problems breathing caused by them both, now my body vanishing more and more, something has changed and it’s not for the better, I just don’t have the answers at the minute.

Read my blog from 2 years ago today – 12/04/13 – Slid down a level, or up a step? >

I woke a 5am today, again it was terrible pain in my left foot. Both a point on the outside left of my left foot and the right side of my big toe were screaming at me with acute sliced through feeling. It was so similar to the problem I had a couple of months ago that at first I cursed my toenails for needing cutting, but when I checked that wasn’t the problem. When I thought it had calmed down enough I climbed back into bed only to discover the root cause, pressure! The pain in my heel was at the exact……….

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……