What is OK

So here we go again a day of left leg pain, not the horror of last week but daily pain with a note of extra intensity. I have had a need in the past few days to write on a fixed topic and haven’t really updated how I am, the reason is simple, it hasn’t really changed. Silence for some people means that it has to have got better, it doesn’t for me and I am totally sure as well that it isn’t for the majority out there with a chronic illness. You can’t talk continually about how you feel, as it is in itself something that gets boring not just for me but I am sure for Adam as well. Being asked how I am on most days will get the stock reply that we all us, “I’m fine” or “I’m OK”, it actually means I am as OK as I can be. It would be incredibly hard to daily answer that question with a list of what has been driving me mad that day. I know from a life of being in pain, that if you don’t talk about it for a while, the assumption is that you are better. I have in my head a line of shocked faces from when I informed them of the reality, that I am never fine or OK, and that the pain I mentioned six months ago, or a year ago, is still there. There is a fine line between informing and whinging, none of us want to be seen as a complainer or a wimp, often a difficult line to walk. The problem starts when you find yourself leaving the consultants office at the hospital and you realise that once again you have said “I’m OK” while silently expecting him to read between the lines and pick up all those things that you have forgotten about, in the year since you last saw them.

I haven’t actually seen my consultant for about 5 years, Adam managed to get me there not long after I became housebound by not being able to use my wheelchair. At that point I could get up and down the stairs, as long as I went slowly, but once I couldn’t get out the appointments ended. It feels as though somehow they have washed their hands of me, because I am now a difficult patient to include on their list. Something I am not actually bothered about as the Neuro’s have never done anything helpful for me other than to sort out my pain meds, which I and my GP have fine tuned, I really can’t see any point in going back, especially if the pain clinic that I finally will see next month can improve things, the Neuro role in my illness is gone.

I had hoped that by now my sleep patterns would be back to normal, it’s now well into my second month of sleeping from 9pm on every day. There just doesn’t seem to be anyway of staying up past that point, and I have to say in the past few of days I have felt the tiredness settling in much earlier, then fighting to get to nine o’clock. I really don’t want to give up any earlier and although I don’t normally fight things, I am fighting this. The strange thing is that it seems to make no difference how much sleep I have in the day. I occasionally only have one hour instead of my normal two, and I have tried sleeping for three hours, but the night sleep still arrives when it is ready. Once it arrives, it has control and I never lie in bed for more than a handful of minutes without being deeply asleep. I am still considering letting my body sleep as it want over a 48hr period, just to see what happens, it is only the kick back from the change in routine that worries me, is it really worth it just for an experiment? I’m not sure.