I've been feeling so alone in this. I've been ashamed to tell people how badly I'm struggling now. (Thanks, internalized ableism!)
But I can practice.
(you don't have to read this)
Hi. You haven't heard from me in a really long time because I've been really sick. I got covid in August 2024 and that turned into long covid, which turned into 3 autoimmune diseases (in a trench coat) and permanent damage to my heart, lungs, and brain.
Everything is different for me now. My energy level, my ability to socialize, my ability to think and remember and follow conversations. My whole life has gotten a lot smaller. My work has gotten smaller and continues to shrink as my energy capacity shrinks. I'm getting smaller and smaller and smaller.
And I'm so lonely. I disappeared because I was waiting to get better, to be my old self again. I disappeared because I didn't want to be a burden, to ask you to come to me, or do the driving, or have our time together be limited by my battery. I disappeared because it feels like the only thing I have to talk about is being sick and that's not fun to be around.
I have to do energy math for every. Little. Thing. And the stuff that went to the wayside first was being a friend. Keeping up. Following up. Being creative and playful and silly. Going places and doing things. I maybe leave the house once a week these days. I save every scrap of energy I can in order to keep working.
It'd be really lovely to have some disability community. To talk to other long covid folks, to other autoimmune folks. It'd be really lovely if someone would reach out and start the conversation, but we're probably all fatigued and overwhelmed with existing.
It'd also be lovely to reconnect with folks. As much as I dislike doing the Absent Friend Apology Tour (again, because even before getting sick I struggled to maintain friendships without some regular proximity), I am willing to spend some spoons on repair. I did disappear with no explanation, and that doesn't feel good.
(I'm so afraid it's not worth saying any of this to anyone. That nothing will change if I do.)
I'm still baffled that so many people seem completely unaware of how dangerous Covid is. Every time you get Covid, there is a chance you develop a life-long disability. It can cause brain damage, as well as damage to the heart, the lungs, the stomach... And yet no one seems to be worried about this. They don't mask when they're sick. They go to work or school even though they have a virus that might disable anyone who gets infected by it. Many people don't even seem to know what Long Covid is, or that the chances of getting it are statistically higher each time you get infected
A simple thing with big impact you can do is continuing to mask in public spaces.
Help reduce the spread of airborne pathogens and keep each other safe!
Covid was AND STILL IS a mass disabling event.
Causing cardiac and cognitive function decline. And it IS STILL circulating. People are still dying. The vax reduces severity of infection but cannot prevent Long Covid!!
There are still disabled and vulnerable people who are essentially forced to stay in their homes since masking was dropped. Who cannot safely shop for food, or access doctors appts bc of the lack of masking, and deserve to be a part of society.
this is really interesting in how it frames disability/low spoons/etc as not being a series of internal symptoms, but specifically a situation in which daily tasks increase in complexity. for example i used to be able to wash the dishes normally. but now mental and physical issues combine to make that situation have a lot of prequalifications (do I have time, energy, how long can I do it without being sore the next day) that means many more steps are involved in getting that single physical act of washing a dish to be done.
annaxmalina
izzy806
baratheonpilled
titsay
prguitarman
romaincrisis
yousharknotpass
