Three times last night I had to take a booster pill, first, when I went to bed as I had been in pain for ages and getting up of the settee was the final straw, I could hardly move and walking to the bathroom was agony. I stayed there a while waiting, not just for my bladder to eventually empty, but for the pain in my arms and legs to melt back a little, both things actually take the same process, just relaxing. I at least was brought back to a level where I could pass off to Adam that I was OK as I stood in the hall saying good night. Once in the bedroom the boosters were my first stop, after leaning on the door in my nightly quest of actually getting a seal good enough to keep the noise down, I have for 13 years been thinking about fixing that damned door, just one of those jobs that somehow doesn’t seem worth the effort until you want it shut. It wasn’t as though yesterday was a tough day, I think it was just the final kick from the Tuesday, but 9pm was long past the true time I should have slept. 1:30am I was awake, pain from hell was located in my left heal, it’s a pain I know all too well, lying there not moving with one of my points of contact with the bed being my heal, means I get the feeling of intense bruising, of course, there isn’t a single mark, just a pain like you wouldn’t believe from doing absolutely nothing. I know that I really don’t move about when I am asleep but you would think that I would if I felt pain like that at least shift my foot, but for some reason, I just lie there until it is beyond what I can bear and even then I still don’t move, I wake up. Trust me waking with that type of intense pain isn’t nice as although I can tell you know what was happening, at the first second of being conscious, you don’t know where it is coming from, all you know is you are engulfed in pain. It takes another second or so to locate it and then moving it is another point that drives you to the point of wanting to scream, you would think removing the pressure would be a positive moment, it is far from it, in fact in this case it took another 5 minutes or so before I was at a point of being able to move and knew I could do so without making it worse. You don’t have to be a genius to know that that type of pain doesn’t just vanish, it takes time, to die back before I could sleep again, so I went into the kitchen, sat on my perching seat and had a cigarette, letting the morphine slowly do its job.
It seems lately that almost every night I am now sat there waiting for myself to be in a state that would allow me to do what I have been doing all my life, sleep. I have since the day I bought a collection of crystal cigarette boxes, which are now spread filled around the house, kept some in the kitchen, but in all honesty the box in the kitchen rarely needs refilling as I almost never smoke through there, but in the last few weeks I have filled it twice. It was actually the cigarette box that made me realise that I was getting up a lot at night and just how much my sleep is now broken. It’s strange how we don’t really notice things like that unless there is something else that drives it home, as I said a few days ago I am now up at least once every two night, always with pain somewhere. So last night my first break was due to my heal, but later when I woke again it was once more my chest, both hug bands tightly clamped, I could breathe, I always can, but my breath is restricted by them and I doubt I am getting enough oxygen as usually I feel light headed and often my heart starts pounding when it is as bad as it was earlier. Once more I reached for my blue tablets, but this time, I just lay back, thinking about rubbish, which I actually had to eventually force myself to stop as it was going round and round, if I was going to sleep I had to think of nothing. I lay there doing my usual, just slowly saying the word sleep over and over in my head, a thousand times more effective than counting sheep, as sheep can do silly things, or turn up in daft colour, or worse wearing clothes.
All the doubt I have been having in the past few weeks about my pain levels and it breaking my sleep, well I haven’t the slightest doubt left, it is out of control just as my body is. I have still not managed to remember to take that extra 10 mg MST tablet that I have in my drugs draw, I haven’t done so because once again I am fighting with the fact they weren’t prescribed for this. I have had them now for over a year, when I was changing from Oxycontin to MST, the change overdose wasn’t precise so I was prescribed them then, clearly I should have returned them to the pharmacist once I had settled on the dose I was happy with, but me being me, well they are still kicking around in my draw. I really have to stop being stupid and give it ago, I will then at least be able to say to the doctor that I know what I need and by how much I need my prescription to be changed. Getting a full night uninterrupted sleep is important to us all and the only way I can see that happening is for me to get my pain levels sorted out, both night and day, painkillers aren’t about taking when the pain is too much to deal with, it is about getting a baseline where life is bearable without having to constantly take top ups. Get that baseline right and I know that life slots back into place, just as it has done in the past.
I am sat here just as I have been too often lately, too tired to be happy getting on with my day and not wanting to retreat back to my bed either. I doubt sleep would really work just yet, but far more importantly I am trying so hard just now to keep to some sort of routine despite life’s insistence that it will remain smashed and out of reach.
Please read my blog from 2 years ago today – 24/07/12 – Optical Neuritis
Two Rooms Plus Utilities 