Sittin' in the mornin' sun
I'll be sittin' when the evenin' come
Watching the ships roll in
And then I watch 'em roll away again, yeah
Look like nothing's gonna change
Everything still remains the same
I can't do what ten people tell me to do
So I guess I'll remain the same, yes
I've had a little while of relative calm and happiness. I have been able to 'dig in' to a mindset of contentment: keep the reflections minimal, keep foreward thinking short-term, essentially just tick over with the air of a man dealing only with the usual daily exertions of life. For all intents and purposes I am a well man on a day-to-day basis. In fact I could easily point at more than several men in my workplace alone who are significantly less healthy than me. Men for whom stress is their pallid-skinned, constantly sweating default setting. Men for whom the clinical fact of obesity is mentally denied behind a daily breakfast of school-canteen pizza slices (for breakfast?! I ask you... Mr Oliver would be very disappointed). Men for whom alcholism can't be much further than a pint away. Not to mention the swine-flu (I work in a school... as far as the kids are concerned everybody's got it [thanks restrained british media...]). But...
The time approacheth... time to poke my poor little, unprotected head above the parapet. Time to face the music again...
Firstly, the preds. I am now back down to my favorite dose of last year: 5mg's one day, 10 the next. This means an average of 7.5mgs a day. Good. For two reasons: 1) it reduces the side-effects monumentally (pretty much goodbye spots (except on scalp, which remians braille-like, but hair-hidden), au revoir roid-rage (except in occasional small doses, although admitedly that could just be me), adieu the trembles...) and 2) my GP reckons that if you can get under 5mgs a day there is little chance of lasting damage, so, almost there. However, and here's the rub, I have not been able to get below this dose for about 18 months. When I last tried 5mgs a day (admittedly nearly 12 months ago) my flare up reignited, and so it was back to 5/10 I went. Therefore this dose has become a bit over significant to me. In my more rational moments I cannot really see how such a little difference (about 2.5mgs daily average) could be so regulatory: the difference bewteen no symptoms and full symptoms... and then rationality leaves me and I start doubting the existence of the UC and blaming the power of negative thinking/madness. So, at some point very soon I am going to have to bite the bullet and reduce to 5 mgs a day, and throw myself at the mercy of the UC and/or my own mental frailty.
Secondly, I have an appointment in the IBD clinic on the 23rd of July, just over a week from now. This is massive because we will return to the discussion about what to do next. The same discussion that lead to hospital and illness via azathioprine, mercaptopurine, and salazopyrine. The same discussion that lead to the since-retracted declaration that I would need surgery 'now!'. The same discussion upon which I forced my will and got them to back down. The same discussion that lead to my consultant suggesting referral to another specialist in London. The same discussion that, in other words, has not reached resolution... And, therefore is forcing me to stick my head up out of the trench. Hope there aren't any snipers out there...
Rituals of Loss
3 months ago