Hey folks! Diana the Physics Girl, who's been ill with severe Long COVID and ME/CFS for a couple years now, is doing an all-day livestream of what her life is like, with really interesting pre-recorded interviews playing alongside!
www.youtube.com/live/v8HWt9g...
I'm gonna live-post some particularly important bits during the time I'm able to watch! So, follow or mute this thread appropriately -- hopefully you'll follow...
Kyle (Diana's husband) and Dr. Raven Baxter (aka The Science Maven) currently discussing caregiving:
Dr. Raven's marriage did not survive her long covid experience (she is somewhat recovered), commends Kyle for his ability to be there for Diana.
Just before this, they were also emphasizing how ableism prevents the sickest patients from getting care at all --
They can't travel to the doctor's office. How can they get care if no doctor will visit the sickest patients?
Kyle talking about how he's absolutely had to learn to skills to fill the role of being a caregiver.
Taking on the responsibility one's self to proactively learn said skills.
"Biggest thing is listening."
Paraphrasing: As a guy, he wants to be a fixer. And with LC, it's more complicated than that, it's such an intense experience. The person suffering it is going through something terrifying. They have to trust that their caregiver:
- believes their experience
- trusts how much they want to get better
(again) Kyle (but direct quote this time):
"Because of the stakes here, you can't recommend anything unless you know how dangerous it is to try things."
Dr. Raven talking about the online disability community coming through: learning about different mobility aids, how to find the right one for you -- all things she had no idea of before becoming disabled.
Dr. Raven talking about how her science communication background has helped her explain to others what's happening in her illness experience.
Also mentions how a lot of other science communicators early on were really afraid to talk about Long COVID at all.
Kyle: "As a society, we *have* to talk about this" (emphasis his)
paraphrase: "Lesson learned from the ME/CFS community--they've been talking about it and society hasn't been engaging. And now lots more people are getting stick with it."
you bet! stepping away for a moment but will be back!
it's miraculous I have the brain today; last night was the first halfway normal night of sleep I got in a whole week (bc the fireworks finally started to ease up somewhat)
