I think a lot of people try to understand what energy-limiting chronic illness is like by imagining the most tired they’ve ever been, and it’s just not an accurate proxy.
the very act of imagining may take infinitely more energy than a lot of people can dredge up while sick.
the very act of imagining may take infinitely more energy than a lot of people can dredge up while sick.
https://twitter.com/bennessb/status/1491550444036014080
I know simulations don’t teach what we want them to, but here’s what my crash simulation would look like:
lie down flat, no pillow because elevating your head hurts. no thinking at all, because thinking hurts. no tv or books or screens (painful). any standing risks collapsing.
lie down flat, no pillow because elevating your head hurts. no thinking at all, because thinking hurts. no tv or books or screens (painful). any standing risks collapsing.
and more important, you have to stay in prone isolation until you don’t collapse upon standing anymore.
but every time you collapse by trying to stand too early, you prolong the crash and make it worse! so you have to be very confident you won’t collapse whenever you try.
but every time you collapse by trying to stand too early, you prolong the crash and make it worse! so you have to be very confident you won’t collapse whenever you try.
[death, systemic neglect]
this can last for months and obviously competes with basic survival needs, but it turns out it is literally impossible to care for your own survival needs under these circumstances.
people with these conditions who don’t have support don’t survive.
this can last for months and obviously competes with basic survival needs, but it turns out it is literally impossible to care for your own survival needs under these circumstances.
people with these conditions who don’t have support don’t survive.
[death, systemic neglect]
it’s so messed up to keep having these conversations…
me: yeah I was really sick and I would have died without [whatever support I had]
person: 🙄 don’t be so dramatic, your illness wasn’t going to kill you.
.
I know, that’s not what I said.
it’s so messed up to keep having these conversations…
me: yeah I was really sick and I would have died without [whatever support I had]
person: 🙄 don’t be so dramatic, your illness wasn’t going to kill you.
.
I know, that’s not what I said.
anyway for a really long time I was undiagnosed & some people would treat me like I had this major flaw where my will to live wasn’t strong enough & I just want to say for the record that that’s an incredibly shitty way to treat anybody.
now I’m like oh, my brain leaks, got it.
now I’m like oh, my brain leaks, got it.
and it’s super important to say here that the fact I’ve recovered some function again after the major crashes I’ve had is a fucking gift.
people spend years, decades in a crash state. that’s why you don’t hear about it. the impairment literally prevents folks from describing it.
people spend years, decades in a crash state. that’s why you don’t hear about it. the impairment literally prevents folks from describing it.
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