I took a booster tablet last night before I went to bed, then lay there just waiting for it to finally kick in and let me fall asleep. I went to my bed about 15 minutes early partly because of the pain I was in and partly because I was just wiped out and Adam was studying in the kitchen, so it seemed the perfect opportunity. For most of yesterday there had been a constant background pain from my diaphragm and intercostal muscles, never quite that painful to make me take an extra pill, but bad enough to make life just that touch more miserable than it should be. Just managing to breath shallowly wasn’t enough to have stopped the muscles from complaining, it does help at times, but yesterday my chest just didn’t want to play, clearly I could breath well enough to get through the day without keeling over dead, but when you actually have to think about how you are breathing whilst doing other things as well, it does take the simplistic angle out of you day. There is something just wrong about having to work on things that we usually wouldn’t even know we were doing, at least my body hasn’t decided that my heart only works when I control it, joking apart there are days when even what should be automatic, seems to become a chore and one that you really have to work on. I think that is one of the things that people who aren’t ill, just don’t get, as when you can do everything, from breathing to running without any thought at all, it really is almost impossible to get your head around the fact that there are people out there who can do almost nothing without an assessment, then a pre-plan and finally a great deal of effort.
No matter how difficult the odd day hear and now is with my breathing, I still have nothing to complain about or even really write about, at least not to compared to some people, or even myself in the past. Yes, I have had a glimpse of my future, but not due to COPD or even spasms, but down to my loosing the co-ordination between being able to breath, whilst talking or eating, it was so bad that I was taken into hospital for nearly three weeks. It all started with a plum, whilst I was eating it I started having problems swallowing it and a piece of the skin was stuck at the entrance to my throat and I couldn’t get rid of it. I tried everything but there it was still there the next morning and my breathing was now getting difficult. I had this idea in my head that it was all down to the piece of skin that I could still feel clearly there, so Adam and I headed to hospital. In the AE department they fetched the skin out of my throat and I expected to be fine. By the time was I sat up on the edge of the trolley, I was in tears, I still couldn’t breath, at least not when I wanted to talk, everything was messed up and my stupid blaming it on a plum was proved totally wrong. I was admitted as it was clear to everyone that something had happened and I wasn’t safe to go home. Over the next couple of days it got worse, I was spending most of my day in bed, to scared to go far from the oxygen that was set up for me. The doctors seemed at a lose as to what was going on and they decided to do the only thing left to them, they gave me intravenous steroids nightly for 4 or 5 nights, by the morning after the last dose, there were signs of things improving, not anything huge, but I was no longer visibly gasping and I was managing to speak more like a human, rather than the stilted robotic result of the previous days and best of all, I was allowed to go home.
When something happens to you once, you fear for ever that it will happen again, before I started having problems with the spasms in my rib-cage and then the tightening and clamping of my entire chest from time to time, the thing I feared most was loosing my left arm again, these days I fear loosing co-ordination again more than anything. Just as my left hand has never totally recovered and is still weaker and has worse co-ordination than before, I have had spells of not being about to breath properly but they have been a case of hours, rather than days, but clearly the damage that was done from any of these things, never actually returns again to perfect. Last night before I went to bed I was again not in total control, add in the pain and I wasn’t exactly confident about how things were going to go, but sleep is so often for me the fixer, it doesn’t cure things but it allows my body to rest and not be forced into doing anything else than it’s basic functions. When I woke at 4:30 am this morning, still in pain and still not breathing normally, I was more than a little disappointed. I went to the bathroom and then headed to the kitchen for a cigarette, yes I don’t need telling, but it does relax me and that was what I needed then. Half way through, Adam appeared, it seems to be we have started some sort of habit, meeting up in the middle of he night to pass a couple of words then return to sleep, I didn’t though. Shutting down your brain is the hardest thing there is to do, especially when the thing you don’t want to think about, is causing you pain and it doesn’t matter how hard you try to breath shallowly, whilst still trying to get enough oxygen, when you have not just your diaphragm but two other bars of spasm clamped across your chest, distraction is impossible. I lay there for two hours, searching for the sleep I still very much needed, but found nothing, just more thoughts, more fear and more reasons not to sleep, so I gave up.
I woke Adam from the settee and sent him through to the bedroom so that he could still get the peace to sleep and he does just occasionally enjoy getting to lie in bed. I never made him move through here, he chose to as his snoring used to keep me awake with results that we were both very aware of. It’s now three hours on from then and I am at last breathing as normally as I ever do, I was right, I needed to be upright. There is one thing that I have learned over the last couple of years, my lungs don’t like me lying down and although I never lie flat any longer, using the elevator to keep the top of the mattress raise, last night it just wasn’t enough. Looking back I should have tired raising it even further, but somehow logic always seems to evade me when I need it the most these days. Although I have now got the much needed oxygen under control, I am still in some background pain other than my now familiar diaphragm pain, strangely mainly in my back, I feel as though someone has been kicked it, sort of bruised if you like, but I am breathing without thought.
I can only guess at my future, but I have a picture in my mind that is all too clear and brings all those things together. All my intercostal muscles clamping like an iron corset, my co-ordination vanishing and every breath having to be thought about doubled by not just getting air, but getting enough to allow my brain to keep functioning. My diaphragm locking in a spasm, causing a pain that makes you not want to breath so there are two instincts working against each other and it all working together against me. As my consultant warned me, my MS could just stop me breathing, long before my emphysema gets the chance to, but that isn’t today so life moves on again.
Please read my blog from 2 years ago today – 4/11/12 – The day after
Two Rooms Plus Utilities 