To summarise, my colitis flared up, the specialist put me on a short, reducing course of steroids, they worked like a dream when I was on the highest dose but once I started reducing the dose, some of my symptoms came back. And right now I don’t know what to do.
Tonight I can’t sleep because I’m in discomfort. Not in pain, it doesn’t actually hurt as such – well, not too much anyway. My tummy (well, some part of my digestive system, I’m not sure exactly what because it’s inside me and I’m not a doctor), is uncomfortable enough to keep me awake.
I don’t want to stay on the steroids. While I was on the high dose, my appetite increased and I put back on half the weight I’d lost on the Cambridge Diet. I also stopped being able to sleep much, but then became exhausted, got a bit physically shaky, a bit emotional, and my energy levels dropped. I would not want to live like that all the time. On the other hand, on the lower doses I feel uncomfortable and slightly sick, pretty much constantly.
I kept my mouth shut about the symptoms coming back because I was ashamed that my body didn’t respond as well to the steroids as it could have done – and because I am frightened of what that means for my future. I just got more and more bad tempered as the week went on and the discomfort increased.
Right now I feel scared, powerless, and out of control. When I see a specialist, he asks me lots of questions that seem fairly random, which I do my best to answer but can’t guarantee I’m entirely accurate with – and based on about five minutes of this interrogation, he makes a decision on how to treat me. I tend to get very little supplementary information – I rely on the internet for finding things out like, mouth ulcers and arthritis-like symptoms are part of the colitis; my kind of colitis (severity, my age and position in the bowel) means I’m actually not more likely to get cancer or toxic megacolon than people without Colitis; and I should probably take up smoking to alleviate the symptoms (although for Crohn’s disease, the opposite is true). Yeah, to be fair, there’s no way the NHS would ever tell me that!
I’ve now got my nose up against a future where I’m on and off steroids, either feeling shaky and eating constantly, with the increase in size and steroid moon face to go with it, or feeling constantly uncomfortable and slightly sick all of the time, and staying up all night because I can’t sleep. Not ideal. Trouble is, I’m exhausted, mentally, physically, and right now following the accidental death of one of our cats and various other more minor stresses, emotionally exhausted too.
So. Although I know that I’m not prepared to accept either of these as my permanent way of life, although I know I will find another solution, right now I don’t have the strength to go chasing after it. And that’s why right now I just don’t want to think about it. Or talk about it. Yes the NHS could do a lot better in their treatment of me and their dealing with me in general. But at least we have an NHS. In many countries in the world, I guess I’d be seriously ill or seriously broke by now. I’m very thoroughly fed up and I want a rest – but I’m also very grateful for the treatment and care I do get, for the fact that I’m nowhere near as bad as many other people who have colitis, for the fact that I’m still able to hold down a stressful and demanding (but very enjoyable) job, that I’m still just about able to look after my family. Just don’t ask me to do the housework as well…