Gosh i love occupational therapists. I’m at a webinar about pacing through summertime, and this OT just shared a “success story” from a client who got a banner for a party they hosted. Instead of saying “happy birthday” the banner said “please leave by 9pm”.
This is the same OT who apologized for not being able to put someone in a coma to reset their pain responses. A queen.
Aww, how lovely to see an interior design youtuber give a great 30 second explanation of ME/CFS. Bonus design tips about how to put a bed in your living room.
One more data point in favour of the battery metaphor instead of spoons, I suppose.
There’s a moment in Kidd Pivot’s Revisor where someone exposes an atrocity by presenting “extensive abstract physical evidence” in the form of a dance solo, and it works. When I watch someone move their body, I can sense in my body how that would feel. We can communicate abstract things that way, and we can have a shared understanding without language.
I knew this before, but the phrase “abstract physical evidence” comes in handy surprisingly often.
(Revisor is streaming on Marquee if you need some dance theatre about corruption, comedy, and the relationship between language and the body.)
Anyway I think about “extensive abstract physical evidence” in relation to ME/CFS a lot.
A disease that doesn’t even have a satisfying name so we put two flawed names together with a slash, a disease where it’s not defined by specific symptoms so much as the meta pattern of how symptoms come and go, a disease where nobody knows the root problem or how to explain how all the symptoms and patterns fit together. A disease where we have fatigue “but different from normal fatigue”, where “malaise” can be life-threatening and “exertion” can mean something as small as perceiving light.
Just a trainwreck of inadequate language, and yet, people with ME manage to know so much about the situation in, like, an abstract physical way.
Getting weepy about Violet Affleck pointing out that Planet Earth experiences post-exertion malaise, and people with ME/CFS know the hard truths about how to deal with that.
Because pwME know that a crash is unpredictable and impossible to reverse, the goal of pacing is to not encounter the symptoms at all. Success is measured not by a fast and furious response at the moment of crisis but by the absence of a need for intervention. But US society, like a new pwME still unfamiliar with the costs of PEM, is staring down a cycle of “crashes” from which we won’t be able to easily return
Every now and then an audiobook has a feature I didn’t know I needed. This morning I am listening to a chapter about (political) organizing with a chronic illness, and you can hear the author-narrator yawning as she gets through it. Big love from this reader who is also too tired today.
Book is Overcoming Burnout, by Nicole Rose, done as a free private podcast feed. (Nicole is a herbalist I admire, who also wrote The Prisoner’s Herbal, and Herbalism and State Violence.)
I have an energy impairment so i am always on the lookout for chill, seated projects you can do in brief sessions. Lately I’ve been trying to identify my various yard bumblebees .
I think this one is Bombus mixtus, the fuzzy-horned bumblebee. Their butt stripes go yellow-black-orange, they seem to be passionate about pollinating raspberries, and last year they nested under our compost heap.
These Bee ID Cards from the BC Native Bee Society have been the most helpful bumblebee field guides so far. I *love* focused guides for small regions, rather than wading through an encyclopedia of North American Insects.
I’m also very into these bee bingo cards from the BC Native Bee Society, because they have a separate card for wannabees. Yes! I wish all field guides included lookalike info.
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.