Chronically ill, autoimmune or other disabled folks: how big is difference between your good and bad days? I’m so curious what’s actually different on the highs & lows. Really want a mobile unit taking blood samples every single day for a year to see what shows. #autoimmune #chronicillness - ThreadSky

auntiecreebs.bsky.social • 121 days ago

Chronically ill, autoimmune or other disabled folks: how big is difference between your good and bad days?

I’m so curious what’s actually different on the highs & lows.

Really want a mobile unit taking blood samples every single day for a year to see what shows.
#autoimmune #chronicillness

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dangobear.bsky.social•121 days ago

On a really bad day, it’s really hard for me to get out of bed without feeling vertigo, lightheadedness, joints and muscles aching in severe throbbing pain. On my good days which are few and far between, I can get up and do some chores but usually I am met with a flare the best day that lasts days.

auntiecreebs.bsky.social•120 days ago

I’ve had periods of time like that, and imagining that being always is awful. I’m so sorry your good days are few and far between.

Are you able to make it to Dr appointments? Or do those have to wait for good days?

erisataxia.bsky.social•121 days ago

On a good day I can work, do house chores, and go outside (as long as I'm not in the sun and it's not too hot). I can do med impact activities (but not cardio). On a bad day I can't get out of bed. Some days I can hardly sit upright while in bed

auntiecreebs.bsky.social•120 days ago

Sounds a lot like my good & bad days.

I’ve never managed to make it to a dr on bad days, have you?

I feel like that whole side of my illness is absent, no tests, no examination, because I’m trapped in bed on those days.

erisataxia.bsky.social•120 days ago

Same, I can't make it in on my really bad days, and the best I can do is blood pressure checks and the information from my Polar heart monitor- and none of my doctors ever ask to see, or seem to want to see, either of those anyways🙄

annapox.bsky.social•121 days ago

On a very good day, I can exercise both my mind and my body. I can do yoga, do some brain work such as math, do a couple chores, maybe run an errand or two. On a very bad day, I only leave my bed if I have to go to the bathroom, I can't do brain work, and I spend at least half the day asleep.

auntiecreebs.bsky.social•120 days ago

Sounds really familiar. ❤️

Have you ever been examined by a dr on a bad day? Or had testing done then?

I’m wondering if medicine in general is missing a big part of illness, when we’re stuck in bed, or if others make it in to be seen in a way I’ve not figured out.

annapox.bsky.social•120 days ago

I've been to the ER on bad days when my migraines didn't respond to my usual meds, but that's about it. But it's not like my health issues are a mystery. It's just that the things that trigger flare-ups aren't always avoidable or predictable. I have fewer bad days now than I used to, though.

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