I've been thinking a lot about death last couple days. Prompted by helping my mom get her paperwork together, and by my own medical situation
There's a famous quote from a doctor who works with HIV and MECFS, where he says that the type of fatigue that MECFS people (and now long covid people) live with for decades is normally only seen in the last couple weeks of life, for HIV or cancer patients
That hit me in a very different way when I was reading hospice reddit last night, and seeing people talk about their family members who were able to go from the bed to the couch, and chat with visitors and stuff, up until 2 weeks before they died
It makes me realize how much I have lost
It also makes me realize why long covid is so hard for doctors to understand, because MECFS patients were been cut off from care for decades, until the advent of telemedicine
Suddenly doctors are seeing us for the first time, and we fly in the face of the expected pattern -- because the pattern was created by excluding patients who were too ill to come into the clinic, but who didn't die
NilaJones /
npub16h…smeey
2024-05-28 05:53:39
Author Public Key
npub16hqfke4xv27tdc26pg7varduge6st9gwfuwrqlp5wazwmjhpdjfqgsmeeyPublished at
2024-05-28 05:53:39Event JSON
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