I really ought to write this stuff more. I’m going to try. Three years have passed and I’ve singularly failed to record any of the changes there have been in my body, mind, soul. I’m hardly likely to be able to go back over and see how I’ve improved, or degraded in that time without a sensible record and so very much has happened – well, I mean three years nearly, duh!
I can see that the last time I wrote about it being poison day and being generally displeased with that fact, having an expectation I’d be taking the methotrexate indefinitely and rather morbidly contemplating the possibilities of not taking it (and maybe dying) or taking it and being forever miserably sick.
It’s nice that I can report, that in fact, neither of those things came to pass. My blood counts recovered sufficiently that I was, after all, able to stop taking methotrexate and not die. In fact I have been off the MTX for, well long enough that I’d have to check the records, so I guess more than a year. I’m still taking prednisolone, but at least I don’t have the weekly poison day to get over. People laughably talk about hump day – how little they know.
My mental health isn’t much better. I’ve seen psychiatrists and psychologists and I’m a bit more stable I guess. I’ve been on a new drug regime for a year now, taking duloxetine and though the first couple of weeks adjusting to the new medication was hellish, once the switch clicked (and it was very much like that) I’ve been a lot better. Unfortunately over Christmas I got sick and was unable to meet some appointments, so I am now “between” psychologists. Not sure where I go from here, but as I’m pretty solid at the moment I think I suck it and see.
Last August I had an injection into my sacrimal joint to see if this would help my leg pain. The boys at LGI wanted me to get a second opinion so I duly went to the Leeds pain clinic. Being as I was going there, the Dewsbury clinic had to discharge me, which I quite understand. Trouble is, the Leeds people never followed up on anything, so here I am near on a year later with no pain consultant at all. I’m not happy. I’d like to talk about a way of reducing or eliminating the fentanyl, ideally with the least possible side effects, but I want a proper pain consultant to talk to about it.
So, I’m due to see the sarc doctors on 8th May. I’ve been having a bit of trouble with breathing, like taking a breath and there wasn’t enough air in it, nor the next breath or the next. A couple of nights ago I woke up and the air was like syrup, trying to get it into my lungs a real struggle. Good job they are chest guys and I can moan at them about it. I will also see if they will refer me straight back to Dewsbury, where they were looking after me for pain stuff.