A silent power

I found myself yesterday lunchtime, sitting in my wheelchair enjoying a cigarette and watching Eastenders, I missed it the night before, totally my fault, I forgot about it. A programme I watch four evenings a week and I forgot it was on, only my brain could be that thick, and that stupid, but that’s another story. Anyway, I was sat there, just staring at the screen when suddenly I noticed something. To be honest, it was more of an awareness rather than something that actually happened. I knew that I was sitting there slumped to one side, with my head tilted even slightly further over, instead of sitting upright as I usually do. My legs were slanting over, so that my knees were together, resting on the chairs frame. I felt like a sack of potatoes, but it was more than that. Probably because I still had my tray/bag strapped to the front of my chair, for a second, I was aware that I was the mirror image of all those people who I had seen at the hospital when I was on the neuro ward. The only difference was that my jaw wasn’t hanging loose, and I wasn’t strapped to my chair to stop me sliding off. I felt terrible, firstly, for even thinking such a thing, and secondly, because it scared me. Everything seems to be rushing at me lately, this latest mental muddling of fact and memory, made me feel even more as though I am racing into the future, one I felt only a few months ago was miles away. I know, I don’t need anyone to tell me, that I’m a long way from where those poor individuals had landed, but I felt a comparison, one that was too close for comfort.

Sometimes, our minds can take images like that and thrust them into a scary reality that doesn’t even exist, but it doesn’t stop you feeling and seeing them. I almost instantly pushed my back into the chair and thrust myself into a fully upright position. If the tray hadn’t been fixed securely, I think I might have flung it across the room in anger. Except the anger wasn’t at the tray or the chair, it was at life. It’s moments like those, that makes me sure, that I am in a grief like state, otherwise, I would have just shook my head at myself, and possibly laughed as well for being so silly. I actually wish now, that I had brought the chair out of the cupboard back in July when I first started thinking about it. If I had, I might not feel as bad, as I am sure it is a combination of my lungs, now needing twice daily care, and the wheels together, that has brought this whole thing on. Minds are contrary things, why can’t it just be happy that I am in less pain and that I can at least breath with some more ease. No, it has to get itself into a spin about losing control and needing more and more care all the time. Just to make it even more stupid, I am coping wonderfully with the chair and managing to do more and more almost daily. There is little that I can’t manage with 100% more ease than I did on week one, so why is my brain make life so hard?

My mood yesterday wasn’t helped by one other thing that happened. Having written a glowing statement about how I was feeling better and that my pain levels were lower, I went to bed on Thursday night and almost instantly, my lungs clamped. So, OK, runs of spasms happen all the time, but it has been over a week since that my chest literally just clamped solidly down. When it happens, it is always triggered by a run of intercostal and diaphragm spasms, then out of nowhere, someone suddenly sits on my ribcage and tightens it like a corset. Just like a corset, it is tight, but I can still breath as long as I keep those breaths shallow. Once more, I was lightheaded, with my pulse thumping through me. I was engulphed by the feeling that if it wasn’t for the fact that I had to keep thinking, keep making sure that every breath was perfectly measured, that I would pass out. My night time normality was back, along with the morning doubts over whether or not I had fallen asleep, or fallen unconscious. I know it was stupid to have even thought that I was going to be free of this, but it was the longest break that I have had for weeks and weeks. Being human and hopeful, is often the worst thing we can be. It often feels like the best state we can ever be in, is accepting, that way, disappointment doesn’t stand a chance.

I have often wondered if that is actually the reason that my life with illness has been easier than many peoples. From birth to adolescence, I lived in splendid Victorian obedience, no questions, no complaints and no free thought. I didn’t even dare to express likes and dislikes, I wasn’t allowed any, but at that age, you don’t question, you accept, as that is life. When I found a voice, they only heard it for less than a year, as when neither confinement nor abuse, restored my deference, I was thrown out aged just 13. It didn’t end there, though, yes, I had a window of fewer than three years of being me, but I ran straight into another life just as hard. My entire life through to the age of 28 had been once more one of compliance. I had learned that fighting back was pointless, things just got worse, but if I let life happen, I would survive to live another day, and survive it in less pain and misery. It may not be the right way to learn anything, but I learned to accept and if there is one thing that makes life with chronic illness easier it is acceptance. There is no point in fighting, you can’t win, you’re not going to win ever. Everyone who is diagnosed with a chronic illness quickly learns that their illness is invisible, others can’t tell you are ill just by looking at you. What most miss, is that you can’t punch an invisible foe, and you definitely can’t punch yourself, well at least not hard enough to make a visible impact. I recognised it with ease, and fell into line, compliant and obedient, but this time, still with a voice. My root to that conclusion may not have been conventional when it comes to illness, but I honestly believe, that for once in my life, accepting, was totally the right thing to do.

To date, I have been the perfect patient to my health. Everything it has thrown at me, I have worked with and accepted. Not always with good grace, I am not that lily-livered, well at least not yet, but I have done the right thing, not to nurture it, but to nurture me. Self-preservation is an involuntary act, but there comes a point where the balance is suddenly uneven and there is nothing you can do about it. Up until now, I have seen myself as a complete person with a future that isn’t one to be afraid of, it was too far away for that. My immediate future, well, it was to continue very much as is. I am housebound after all, what more could I lose? I already have been reduced to being in the ranks of the unemployed, not even being able to be a housewife by choice or otherwise. My life has polarised, I am sat daily in the same place, after spending the night, asleep in exactly the same position as I have slept in for over 2 years, flat on my back, unable to move. Every day starts at the same hour and ends at the same hour. Nothing changes, not even my range of foods, limited by what I can swallow and what my intestine can work with. I take the same drugs, drink the same liquids, move around the same 4 rooms that I have lived in for 8 years, unable to leave unaided. I see the outside world rarely, and when I do, it is at the bidding of the NHS, and with their assistance to exit my own home. All of this I accept, this is my life and once appeared as my future, but that’s now changed.

The image that jumped into my head, that is my future. I have always known that, always been aware, that my end wasn’t going to be pretty. A diagnosed off PRMS, take dignity from our final days, weeks or months, and all beauty is removed from death. It doesn’t matter how accepting or not I am of any of that, as I can’t change it regardless what I want, that is my written future. When my legs started to leave, I wasn’t ready to accept it, I don’t think I am really ready to even now. When I needed my chair the first time round, that was different, it gave me freedom, I could leave my home and go where ever it could take me. I couldn’t climb mountains, but I could explore the city, go to the pub and most of all, carry on working. It opened up the world. This time, this time it has changed nothing, only allowed me to continue, doing exactly what I was without it. It took, it didn’t give. It took that last bit of image, that tiny bit that said, I was me. Even my lungs need supporting, just so they can carry on, doing what they already did. To stay still, I am needing more and more, just to keep me here, stationary. My immediate future is going to be one of treading water, just keeping my head above the waves and waves there will be. The balance of my life has changed, I have entered that phase where life is about nothing other than maintaining where I am, but with growing and visible help. Never again will I just have to take a handful of meds and hope for the best, more and more of me, now needs direct action, just to continue. I don’t need to ask where that picture came from, or why, the reasons are clear. I just wish that like so many things, my mind had chosen to forget it, but no, it had to throw it at me, force me to face it, to acknowledge it and to hear it demanding, acceptance.

Please read my blog from 2 years ago today – 17/10/2013 – Asleep with more sleep required

I have had this idea now for a while that the next time life flung itself off a cliff that I was going to sit here and write, get it all done in detail as it happened. I wanted to take it through step by step, just how it felt and just…..