alumiere (alumiere) wrote,

Invisible Illness Awareness Week

So this week is Invisible Illness Awareness Week, and I'm going to try to post an update every day. I'm doing better a lot of days at being calm about the broken, but it's still a struggle. Here's what I did yesterday and thus far today...

Yesterday I woke up about 6:30am; my meds had worn off and my shoulders/arms were yelling at me. Because we had plans to go to farmer's market around 8ish, rather than taking a dose of the meds that help the pain and make me sleep, I took the meds that help pain less but don't knock me on my ass. Went to farmer's market as planned and ran some other errands, then came home and took a real pain med and napped for about 4 hours.

Got up, had dinner (leftover grilled chicken, asparagus and potatoes from Friday), T shaved my head, and we both showered and dressed for dancing at Mal. Sadly even after a long hot shower I was hurting pretty bad; I took another dose of pain meds, this time the one that makes me not care about the pain but leaves me awake for about 4 hours (unfortunately I can't take this one more than about twice a week or it loses it's effectiveness - plus a refill is $485 which I do not have but I need to refill it anyway this month or next - I'm down to 7 pills).

It took forever to do its job this week, so the first half of Mal was sitting on the patio talking to people and sipping on a drink while waiting for it to kick in. As usual, T carried me up the stairs. I eventually didn't care about the pain and spent some time dancing on my normal box at the front.

People ask me all the time why someone with chronic pain would chose to dance on a box, or to dance at all, so let me try to explain... Ages ago I found that going to the right club and losing myself in music/dance was the place where I was most myself, most centered; where I could funnel all my doubt, anger, pain, stress and let it go. I need that release, and that short bit of time where I feel like I'm still me. As for the box - well, there is less chance of someone bumping into me - I bruise so easily that even an accidental and delicate hand will leave wherever it contacts turning rapidly purple. And I like being able to dance and watch others from a safe vantage point; yes, there is a chance I could fall, but I became adept at staying in my space a long time ago, so it's not a worry - I know where the box is without even looking. I don't even think about knocking over my glass which is inevitably in the corner of the box at my feet; that feeling of being centered extends to my awareness of the space I'm in, and it feels right.

So I intermittently danced and talked with people until it was time to head home. Yes, as usual I'd get down off the box and limp out to the patio - the pain doesn't go away, I just don't care when I'm dancing, and that's enough. T dropped a friend off near us on the way home, then he helped me get out of my corset/shoes and I crashed after my sleepy meds.

I'm glad I have them, but wish they had a longer half life than 4ish hours - I woke up around dawn and eventually gave in and took another round of meds. I got 4 more hours of broken sleep, and finally gave up around 11:15am when my shoulders/arms wouldn't stop with the throbby burny numbness.

I pulled the covers up on the bed, threw on a nightgown, and went out to my comfy chair on the patio in hopes that would maybe let me sleep some more. No dice. Instead I've been catching up on blogs and such in my feed. I knew today would be a wash (Mondays usually are - but if I get to dance it's worth it), and my brain is surprisingly here for a sleepy Monday. I'm going to fix myself a sandwich for lunch now (it's 3pm) and then read some more.

This is a pretty good start to the week for me physically - I'm thrilled that it's hot and dry in LA, my pain is tolerable with meds, and I'm not too out of it. I hope this continues but that's not likely and I need to just deal with it as life happens.
Tags: meds, memes & writers block

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