I have another appointment at the amusingly-titled 'pain management clinic' next week. They sent me a text message to remind me. How kind. Now I'm going to be panicking all week, instead for just a few days beforehand. Lovely.
I've never been very good at saying no. I'm eternally determined to please all of the people, all of the time, and preferably all at once. I particularly seem to want to make doctors happy. And it's not getting me good treatment (in either sense of the word).
I'm tired of being treated like a small, rather stupid child by doctors. It's time to learn how to say 'no' to them. Even though that's going to mean a - probably temporary - refusal to work with them.
I've been thinking about this a lot, since October especially. I get diagnosed with a genetic condition that no medical professional spotted despite dozens of opportunities in childhood, and maybe hundreds in the past two years. What's the response from doctors? Do they apologise for being wrong for all those years? For treating me like I was stupid and attention-seeking and crazy and wasting their time? For inflicting, indirectly, damage that is unlikely to be reversed now? No. It's still Try Harder - Do More - Keep Going - Push Through The Pain - Do More Damage - Look More Normal - Be More Acceptable - Play Our Games.
One thing I have firmly decided is that if they're going to continue to refuse me the help I ask for - from physio with local people who I trust, to any reasonable level of pain control - then I'm not turning my life upside down and shoving it in the toilet just to make them happy. I'm accepting the UCLH referral because they're apparently very good. But I'll walk away if they ask me to give up any more of my quality of life just so they can exchange my wheelchair for looking more 'normal' and being in a hell of a lot more pain. Which they don't want to help me to control anyway... (Anyone else ever feel like they're stuck in someone else's experimental hamster wheel?) Someone else is going to get used to hearing 'sorry, I can't help you' now. I wonder if they'll put up with it as quietly as I have up to now.
So, that text message ruined my day. I was going to sort out my garden and everything. Maybe tomorrow. I'm going to go and practice some driving now. Later, peeps.