I’m forever grateful to MEAction for their Stop Rest Pace campaign that started early in the pandemic. It’s the reason I stopped trying to push through my fatigue, and realized I might have long covid. Their resources on recognizing PEM and learning to pace are honestly worth a read for everyone during these times.
And the guide they made for doctors in collab with the Mayo clinic is so smart.
A book that helped me adjust to long covid life is How To Be Sick, by Toni Bernhard, who is a Buddhist with ME/CFS. It’s not a “heal yourself with meditation” book, it is a “techniques for handling suffering” book.
I had heard sick and disabled people say everyone who receives a life-changing diagnosis should be provided a doula or guide for the transition, and this book served a little bit of that for me. Passing it on.
It’s heartening to see more people talking about the ever-growing long covid disaster, and also it has been getting hard to endure all the awareness raising that aims to scare people as much as possible by using my health conditions as an example.
It’s important, keep it up! But for #LongCovidAwarenessDay I want to lift up things that have made long covid easier for me to bear. Sending so much love today to fellow long haulers and to all the spoonies, especially people with ME ❤️
My favourite fedi thing might be seeing all the domains people have registered for their servers. It’s been ages since I encountered this many urls with actual human flair. Sincerely welling up about jorts.horse and butts.team
My peppers are sprouting, Aleppo peppers from seeds I saved last year. I started growing these because the plants were facing extinction due to the war in Syria. There was a push to steward the seeds for when Syrians could return to farming them. (Also the peppers are delicious.)
I remember Cheryl Bryce talking about how war and colonization doesn’t only happen to humans, it happens to the rest of the inhabitants of the land as well. That invasive species are a form of colonization. I started growing qʷɬáʔəl (kwetlal, camas) because so many people in that podcast emphasized that settlers can and should learn to propagate Indigenous plants.
Bonus pronunciations:
It’s interesting to me that with all the complications of power dynamics and cultural appropriation, it’s so common to encourage allies to do seed keeping work. Yes, grow the seeds in your garden. Yes, save the seeds and trade them around. It isn’t only hobby gardeners who want to share seeds and cuttings and harvests. (Disclaimer that each plant has its own discussion and context.)
Now that it is seed starting season in the northern hemisphere, I wonder who is growing Palestinian plants, to keep the seeds for when Palestinians can grow them again. This episode of Seeds and Their People from a few years ago is an interview with a Palestinian seed keeper in Philadelphia, growing molokhia (jute), kusa (a summer squash), and zaatar (a savoury herb), and it includes links to buy seeds from the True Love Seeds network of small farmers.
I’m posting these little camas babies for #MillionsMissingFlowers , a monthly chance to talk about ME/CFS.
This month I am thinking about how long it takes to get an ME diagnosis, 5+ years or more on average. ME is already listed as a common (5%+) outcome of covid infections, and we’re just finishing year four. I wonder how many people will realize this year that they got ME from covid in 2020. I wonder about Omicron in 2022.
Sources:
I really appreciated Bea in this episode of Death Panel, talking about the process of self-diagnosing before deciding to see a doctor.
She spent a year thinking she was just reading too much, before realizing she was going blind. Different conditions, but that’s so familiar to me– I spent a year thinking I was just sleep deprived or stressed before realizing I had cognitive and energy impairments.
Today’s small pleasure is waking up on February 29th and realizing I am not currently responsible for any legacy software systems ✨
FirstVoices had a 20th anniversary event last week and I learned something that melted my mind a bit. Dave Elliott invented the writing system for the SENĆOŦEN language on a typewriter. (This typewriter!)
Creating new symbols for the sounds he needed by backspacing and combining marks on top of letters. It’s so smart and simple! I keep thinking about it.