I returned from the UAE on Friday morning feeling a lot better,
and after unpacking at home, headed off back to hospital for another
appointment. With a little bit of colour, it would be hard to disguise
the fact that I'd been somewhere where there was sun, but I'd already
decided that I'd tell the doctor, that, despite his advice I went
Looking back on my decision to fly out, I can say that it was the
right one. I feel so much better having been away just for the week,
physically and mentally.
I've had so much more energy since I started on steroids, and I'm
constantly doing things to keep as active as possible. I'm going
to sleep quite late in the evenings after midnight and waking up
pretty early, usually between 7:30 and 8am. If I can keep this pattern
after coming off the steroids then I'll be pleased. Sometimes I
may get a little bit hyperactive. My girlfriend would probably say
more often than not, but I think it's because she's feeling a bit
run down at the moment. It's clear that my early morning enthusiasm
hasn't worn off.
I'm able to do certain activities now that five weeks ago I was
struggling to do, like swimming. I'm still getting out of breath
fairly quickly, but after changing my breathing (from the chest
to the stomach) I'm able to last longer and start working my muscles.
I've really atrophied and really notice it by looking at photos
from earlier this year. Still the muscle loss isn't an issue as
I've been there before and know I can regain it. I've got a bit
more of the 'moon-face'. It's takes a little getting used to in
the mirror, but on the other hand, it's making me appear healthier
as my cheeks are fuller.
Lowering the Steroid Dose
After a long wait in the clinic, chatting to a friend who has recently
had a bone marrow transplant, I eventually saw Eduardo (the consultant).I
told him I'd been away, along with my reasons for doing so. He was
very understanding and was happy that I was indeed feeling better.
He could see that I was looking and acting stronger, with more pronounced
movements of the body. So he suggested lowering the prednisolone
from 60mg/day to 40 mg/day. I'm to come back again in 10 days time
to see how things are going. In the meantime I'm keeping myself
busy writing Christmas cards, and reading about hypnosis and NLP.