I used to get a magical half hour when I first woke up, I always thought it was partly because I take time to wake up, that my nerves didn’t react the same after lying partially dormant for so many hours, but I would be able to get up, go to the loo, fetch my glass of coke and come through here without pain. Even when I sat down I couldn’t feel burning, or pins and needles, just a strange fuzz, as though I was made of marshmallow. I have always lit my first cigarette while my PC is booting up and there is a special enjoyment of that one cigarette as it is all I can taste or feel, nothing is there to spoil it and nothing is there to take away the pure enjoyment. You would think after being a heavy smoker since I was 13, that I would by now have a smokers cough, I don’t and I never have done, yes I would cough if I had a cold or a bad throat, but in normal health, I have been fine. That first half hour was my time, the time when I wasn’t connected back to myself, well not completely, it was as if I were me for those few moment, not an illness, but a person. Yes there were the odd days here and there, times when I was in a flare that I would wake in pain and didn’t have a second of freedom until I slept again, but they were the occasional, not the norm. Then a few weeks ago, it started to change.

At the start I wasn’t concerned as there have been so many downward indicators that were all pointing to a flare and waking in pain, unable to move without mad sensations, was just another part of it. Every day there was some change, some step that told me it was different, even if that was just the fact that the day before I could make it half way across the hall, but suddenly I couldn’t even get to the bedroom door. Some days it would be that bit better, maybe even for a couple of days, then bang, I was back down there again, pain, pins and needles and that constant burning in my feet. At the same time as I started finding the mornings more difficult, I didn’t spot that something else was also happening, I had been blaming so many different things for it, but I now realise I was blaming all the wrong things. Almost every night for the last two months I have woken, some nights for a few seconds then back to sleep, waking again long enough to check the time, then out again. Other nights I have been in pain so strong that I have to settle myself before sleep can return, some I have gotten up gone to the loo, or even to the kitchen for a cigarette, but I now always wake at night for something. I have blamed the light, Adam moving around, or something outside and all of them probably haven’t helped, but I have always been in pain to some level or other. I don’t know when I last manage to sleep right through two nights in a row, where just a few months ago, I slept and I slept soundly, not waking for anything other than the worst of pains. I didn’t sleep like someone had drugged me, I slept deeply and well, well enough that I would wake with half an hour of being me before it all started to close in around me again. Well enough that I didn’t spend every day fighting with the desperate need to sleep, even though I lost only maybe at the most 15 to 20 minutes of sleep, but how much of what remains is deep enough for any true rest to be felt.

This morning I woke at 6:50, I saw the time, turned my head and went straight back to sleep until the alarm sounded just 40 minutes later, I got dressed and as I stood I was fine, but when I made it to the bathroom door I felt the first pain of the day. Why I hadn’t put the two together I don’t know, maybe because it was just too easy to blame it on everything else, after all, I have always had problems with the light coming in, except I haven’t, I don’t now remember having that problem for a couple of years, so why would this year be so much worse than those others? Adam has always been active throughout the night, he never seems to sleep a whole night through, always up for some reason be it just to go to the loo, or strangely to get something to drink, but he has done that as long as we have been together and apart from the odd clumsy mistake, well I slept through. I guess it all adds up, maybe I have just gone through a spell of being thick, or maybe I just didn’t want to see it, as it is another sign that along with everything else paints an even fuller picture, one that says once more that things are getting worse. I have enough medication in the house for another 3 weeks, but I also have a supply of 10mg MST tablets in the house from a year ago, so what I am going to do it up my 12 hourly doses from 60 to 70, that way I will really know if it is just plain and simple an increase on my Morphine dose or if I need something else, but I now know without a doubt that I have to discuss it all with the doctor before I order my next two months supply.

Life is never straight forwards and sometimes we just have to do things we don’t want to, I have been running, well limping away from it all for a while now, I just didn’t want to admit it, or face up to it. What I need to now is stop being so stupid, keep a track of things so that I have a totally clear and simple explanation and talk to the only person who can help me, the doctor.

Please read my blog from 2 years ago today – 15/07/12 – Research, missed opportunities

Sometimes when it comes to research I fear that the picture above is the real problem in finding a cure for anything, lots of different people holding lots of different parts and not bringing it all into one place. I do know that there are many many researchers who do share info and that a lot of the charities act as information hubs, but I worry that there is a hidden gem, that tiny piece that could be the key that unlocks…..