One day

Over the last couple of days, my diaphragm has been driving me mad. It isn’t the fact that I have to spend my time constantly thinking about getting enough oxygen into my system without being in ridiculous amounts of pain, it is just the constant pressure and discomfort that really gets to me. Pain can be managed, I know that and yes I manage it to the best of my ability, but to date, I have found nothing that actually makes sitting with a constant pressure band around my midriff comfortable, Morphine and doing my best to keep the muscles that I can control relaxed just isn’t enough. Everyone focuses on pain when you have something like PRMS, Fibro or COPD when you have all three, well that seems to be all that they see, my pain, trust me discomfort is just as bad especially when it never seems to give in and just give you peace. In many ways, I would actually go as far as to say that it is worse than pain, as pain has an answer in the shape of a little blue booster pill, the pain leaves but that discomfort, it never leaves unless it chooses to. My entire day is spent shifting, moving and trying to relieve it, there doesn’t seem to be any pill that I have that makes a difference and to make things even worse, it just doesn’t change, it just goes on and on and on.

Last night when I went to bed I was in true pain, the usual mix of the left side being sliced through by a sword and my right being hacked at by a saw, while a piece of razor wire is wrapped around me daring me to take just one deep breath. I took a booster pill and lay down waiting for it to take over and for sleep to take me out of the whole situation. Just like so many nights in the past year, I lay there scared of not taking deep enough breaths to ensure there was enough oxygen in my system. When I was having the tests that showed up the COPD and the fact that the spasms were affecting my breathing, one of the tests they did was to just put a monitor on my finger to measure the oxygen in my blood. At that point, I was once more shallow breathing and I was shocked to see that the oxygen in my system was far too low. Ever since then I have done everything I can to not take more than four or five shallow breaths without then taking a deeper one, but the problem is always the pain and discomfort. I know also that that is another reason why I am always so desperate to go to sleep as I know my body will adjust and take care of itself without my worrying about it. I lay there awake long enough for the pain to subside and for me to be left just with that band that was grasping at me tightly, just as it is right now. The pressure over my kidneys and right across my front was the only thing left that I could feel and despite going right through my relaxation system, nothing was shifting it. Sleep, regardless of how much you are craving it is hard to find on nights like that and the result is always the same, stupid things enter your head and start chasing each other around, making things even worse. I don’t think it actually took me that long to slip off, but neither did it take long for me to wake again when the booster pill wore off, leaving me to having to go through the whole palaver over again. For some reason, the middle of the night session is always the one that take the longest to return to sleep again from. I am sure that it is because I have had some rest, but not nearly enough and I was getting less and less by the minute.

Half an hour before the alarm sounded, I woke suddenly and did what is the closest I ever get to flying out of bed, a sort of slow twist with a stiff flip would be a better description. To top off my night, I had what I have reported before as the worst spam in hell as you simply can’t break it, right between my legs but so deep inside nothing reaches it. Between that and my diaphragm, I couldn’t even get myself dressed, all I could manage was my top and to grab the rest of my clothes and leave the room without waking Adam. I knew from experience that I wasn’t going to be able to sit to put on the rest of my clothes, I went to the only place that I could think of where no pressure would be applied, the loo. It isn’t an ideal place to try and reach my feet to put on my socks or even get my legs into my trousers, but it was the only place that I had the slightest chance of achieving such a simple act. I then spent the next fifteen minutes of my day sitting on the arm of the settee, trying to find some way of applying pressure, for once I did have some success, well either that or the Morphine kicked in super fast. Right now, despite all my daytime meds, discomfort still reins, including a shadow ache where I would rather not have one as I can do little during the day but sit. This post is beginning to feel like one long moan, but it’s not, it’s more a case of saying to those who don’t live inside a chronic condition that pain isn’t the worst thing there is, there are things that can’t be changed and plague our lives in a way that is hard to get across in any other way than I have. Just like a moan, it goes on and on and nags away at you like a reminder that you really don’t need.

One day, its the dream that most of us live with, just that one day, one day they will find a cure, one day they will fix the pain, one day they will bring back the comfortable we no longer know. One day I will be able to walk without waddeling or dragging a foot, one day I won’t have even a minute of that feeling of being cut in two. One day I will be able to lie down and feel the comfort of my bed rather than the band that squeezes the air out of me, but one day just gets further and further away, rather than closer. What ever our condition is or the drugs that they give to us, the one thing that seems to be missing is the understanding that comfort is probably the most important thing that they could possibly work on for those of us who won’t be here to see the other one days.

Read my blog from 2 years ago today – 21/04/13 – Inviting in the inquisition

I was a foster child from the age of 13 to 16, it left me with a really negative impression of the social work departments, it wasn’t that they failed me, actually they didn’t. I was given exactly the care I needed at the time I needed it, including them knowing I needed to be on my own before I was even 16, I was responsible for myself living in the YWCA. So their assessment and provision of services tailored to my needs, well I have to give them 10 out of 10, but I have still this total negative feeling towards them……

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