Originally posted 07/07/2010
Reposted today as I don't have enough spoons to make it to Naidex, an event I've been looking forward to for 6+ months. In the past 7 days I've also had to say I can't make it to a celebratory night out, my neice's second birthday and the lovely Hardeep Singh Kohli's show.
I'm sorry, I can't. Even typing the words catches in my throat. Or fingers, as my throat can't actually type. Whatever. I think those four small, seemingly innocuous words are the hardest of all to say, and every time I have to utter them a tiny part of me bleeds inside. Practised in the dark arts of loss, I momentarily acknowledge the pain, that it is in fact all a bit shit, before turning my back firmly and focusing on how good I have things.
I'm still free of Oxycontin and it's still slowly improving. I feel better than I have done in months, more alert and more interested in doing things. At times the pain is utterly overwhelming but it's a natural pain, not a drug induced one. I'm managing to do 15 minutes of stretching and physio most days, using the episode of Postman Pat BBC2 helpfully show every morning to distract me from how boring it is. Some days I'm also managing a death walk, some days not. I'm generally managing to read more of the things I'm interested in during the day, to have friends come round for a coffee and to eat a few times a day. Oh, and stay out of bed til around 9pm most evenings. These are all very good things and getting done far more consistently than they have been since the whole Oxycontin withdrawal started, but at the same time they aren't exactly the most exciting or energetic of things and they're draining every last spoon I have.
I'm tired of having to make excuses to my friends about not being able to come to whatever it is they've invited me too. Tired of feeling guilty about not being able to do things, even though none of my friends ever make me feel that way. I'm so excited about actually feeling more awake, more able to get through each day that fortunately that far outweighs the times I feel this sadness and guilt. Disability is so intimately connected with loss and benefit that it's easy to forget sometimes the small cuts hurt the most and need their own time to heal.
Today was a deathwalk day. It went pretty damn well actually. There's quite a few of us who deathwalk down by the beach, linked by an intangible, intimate understanding of each other, whilst remaining nameless strangers. One remarked upon how well I'm doing, that just a few weeks back I was literally dancing on the spot as I tried to progress. I balance with my arms as I become more fatigued and with music in my ears it can feel as well as look like a dance. There were kites being flown, the air was clear and fresh and the world looked beautiful. Working so hard at movement can produce the kind of euphoria any sportsperson will recognise, a simple joy of being.
And, whilst I again had to say 'I'm sorry, I can't' to one thing, I have been able to say 'yes, I'd love to' to another.