The new year blues were getting me down, the words in my mind swirling around – brown, frown, ground, flat, crushed, bruised and battered …
My recovery from the traumas of 2004 was, oh so, slow for me and EaZyD. But, ya know, how much worrying can a person do? I figured it was time to consider the upsides in 2005:
- A great result for my first relapse, in March, when I rang Dr M (my consultant) and was in hospital in less than a week. Unbelieveable. They’ve introduced a new policy: minimise in-hospital stays – an MRSA/cost thing. Fantastic. I am finally a day patient and oh, the bliss, I was able to return home every night.
- More of a result is that as I got such early treatment, I am better now than last October, post steroids, and managed to get in our car with more ease than since before September 2004 relapse.
- God 2, Prof C, surprised me by postponing any treatment decisions in favour of more investigations. It felt like a stay of execution, so EaZyD and I celebrated with champagne … I am going to have to kick this habit – just not anytime soon.
OK, that’s it with the upsides, it’s all just too good, isn’t it? Back to the reality of my second relapse of the year:
‘So, it’s just the use of your hands you’ve lost this time is it?’
The junior doctor inferred that this was not particularly serious and perhaps I didn’t understand how severe the side effects of high dose steroids were. He thought I should just have a few more tests, go away and get used to life with no hands. I paused, looked at him, hard and long, and no, I could not let this go.
‘Have you actually bothered to read my file notes?’ Pause for breath.
‘And, are you under some misapprehension that I am completely stupid, without access to the internet or in any way oblivious to the potential side effects of the only treatment that my illness has ever, and continues to, respond to? Perhaps you should consider for one moment the quality of your life without the use of your hands, arms, eyesight? Perhaps you should consider the reality of the dilemma that I face all the time, of unpalatable drugs plus better quality of life now or no drugs and ludicrously poor quality of life now and later?’ Momentary pause.
‘To suggest that I have given these choices no thought until you brought it to my attention is both insulting and patronising …
Please, no, I don’t want you to apologise. I want you to go away and deal with my actual needs not your facile assumptions about what you think these should be.’
I really do not want to disrespect my doctors but I do expect them to recognise that, given the significance to me, I would never give less than full consideration to the choices I have. I am the one who must live with the consequences of the unpalatable decisions we must make.
I have to say it is boring me rigid to recall it. I hate loathe and detest being in hospital so much that even having to write about it makes me not want to write at all, so, no more. I was hospital in a few days longer than expected and am now at home and improving day by day.
I hate the spots the most, though, as problems go, spots don’t quite hack it, do they? Examining my spotty skin, I ask EaZyD if he will want to spend his next life with me. He said:
‘No, I want the new improved version next time – the one in full working order!’
Maybe Santa can help him out with that.