alumiere (alumiere) wrote,
alumiere
alumiere

It's been quite some time since I've posted here, mostly because I haven't wanted to spew my anger and despair all over the place. The world is going to hell, our governments are failing us in tons of ways, and a lot of people can't seem to understand their own privilege. But rather than rail about politics or equality or how crappy I feel at the moment, I have a specific thing to discuss.

I keep calling people out on this in person, and it is not getting through, so perhaps writing it down will give everyone time to process what I'm saying. I have had enough of being asked when I'll get better, when I'll be back to normal, of being told to get well. It's really simple - I have multiple chronic illness, none of which have cures, and several of which don't have effective treatments; there is no fucking better, and this is the new normal as much as I hate it.

I have good days and bad days (more bad than good the last few weeks), but the problems never go away. The pain drops from a 10 (nauseous) or 11 (really nauseous, can't think about food, but not throwing up yet) or an 12 (throwing up because I hurt so bad) to at best a 5. At 5 I still hurt, but I can take less pain medication and do more than 1 thing today - ie: go to the store OR shower and shave, then later on go out with friends OR dance for a little bit. I should note that all these levels are with medications that help without dulling my brain more or making me sleep. The numbness is covering more area now, but staying in the 5-10 range, and I've gotten better at coping with it so I hurt myself less often.

The thyroid disease and associated immune failures are never going away, but the doctor and I have found the right medication to keep my metabolism functional, I get boosters and immunizations regularly to help minimize my risks, and I keep my distance when people are sick. The memory loss continues, and I still don't drive. And the side effects from 'lyrica fail' are ongoing over a year and a half later - hyper- and para-osmia and constant ringing in the ears don't stop, I just have days when they're not as bad/obvious.

I love all my friends and family, and the support and love you give me is invaluable. But please stop with these questions, don't ask me why I've got my cane today (hint - my pain is bad or we're doing more walking than I can handle without it), and allow me to enjoy your company in whatever way I can.

The two pieces below are great things for you to check out as well - they're written by people with chronic illness and cover some of the realities I deal with daily.

http://www.butyoudontlooksick.com/xmedia-press/new-video-christine-miserandino-reads-the-spoon-theory/

http://hoydenabouttown.com/20110813.10393/border-gimps-living-on-the-border/
Tags: medical
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