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.
Update: just got a middle-of-the-night MRI and I cannot recommend it enough to (non-claustrophobic) fans of noise music, experimental techno, etc.
The MRI tech explained that the magnetic pulses can induce currents in your body, so in addition to the vibrations from the loud noises, some people feel tingling or see lights. Wish they could harness that for a club experience.
At a chronic pain seminar tonight, the OT said, “one thing we often hear is, ‘oh i wish you could just put me in a coma until my current neurons would die and be replaced with new ones that aren’t so highly reactive’, but unfortunately that isn’t how the nervous system works.”
Firstly, lol at “unfortunately”. Love this ally who wants to make coma therapy wishes come true.
Secondly, wanting a temporary coma really is a common fantasy across quite a few chronic conditions. I have personally heard it from people with pain, anxiety, depression, ME/CFS, and also just sleep-deprivation (parents).
I mean
I am thinking about how often patients are correct in a general or metaphorical way– folks with ME who say they feel like their batteries don’t work and then research turns up mitochondrial dysfunction.
Makes me wonder what version of coma therapy will turn out to work for us all.
You know, since getting a heating pad for myself there have been a ton of times i have set it up for guests. Sore neck, bum knee, back problems, menstrual cramps, feeling the weather changing, cold kids after sledding…
I should have gotten one years ago just for hospitality!
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.
This was my first time trying a cover crop for weed suppression in the garden, and I think it’s been a success!
My lazy method was to let some volunteer grass grow tall here over the winter and strim it when it had green seeds, around the end of March. Then I covered it with a tarp until it was time to plant beans in mid May. This spot previously had frequent mullein, herb robert, and grasses.
There are a few things coming up through the mulch, which I pulled after taking this, but way fewer weeds than in the parts of the garden that got mulched with compost.
I’ve been researching different ways of coping with weeds, especially around annual veggies, trying to find something more sustainable for my energy impairment / dynamic disability / chronic illness situation.
I got a lot out of the various videos by No-Till Growers on cover crops, mulch, etc. They have a book too, that my library had.
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.
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 ❤️
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.