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let me tell you this, person with ME/CFS or long covid:
the day after you really exceeded your energy limits, you are probably gonna feel OK. maybe a little tired, but little enough that you think, maybe you got away with it. But, its a trick. In a few days is when the crash will actually hit, and it will only be worse if you don’t take precaution asap.
It’s super important, since we can’t always avoid exertion, to try your best to 1. incorporate rest into normal activity. take several days to do one chore, its not illegal. and 2. always rest before you feel like you need to, especially if you’ve had particularly active days recently.
I'm starting to learn that after more serious overextended/overloaded days I will feel 'better'
This is because of:
- compensatory parasympathetic response e.g. adrenaline and cortisol whatever, and the delay will be longer before more serious PEM or a crash
- my autism related interoception (internal sensing) will be out of wack
- my adhd meds work less well
- my executive function is already downgraded or in tight focus (focus in the very short term - see Shafir and Mullinaithan's book and research on Scarcity which is grounded in poverty based scarcity but also applies to illness and CFS/ME. It causes hyper rationality to immediate need which is hard to grasp intuitively when the consequence is delayed)
Hard to learn not to listen to your body in specific circumstances
body thinking is for now
logic and reasoning is for If This Then That later
more thoughts
These things like EF and interoception are not maladaptive patterns or wrong patterns in thinking - they are a problem in delayed biofeedback with PEM
you cannot work it out except by pattern analysis and prediction - doing things by rote. Which is hard when the other skill you are developing is finding a baseline, resting before you are 'out of charge'. Further irony is I mostly face these severe over exertions during only 2 parts of my life - discrimination about Disability (at work when I could work) and traumatic poor healthcare.
I remember writing in an email to HR when I was having crashes following overt written discrimination and abuse at work that I had a new CFS diagnosis and was acutely ill from harm from the discrimination. My union rep later told me the HR person thought I was irrational and must be 'hard work' because I used the word harm.
This week I had to see an audiologist and then a dr. The audiologist was superb and knew all about CFS exacerbating sensory sensitivity and then catch 22 exhausting us from trying to cope. The dr by contrast was (will redact till I take a complaint) and clearly did not understand CFS and sound sensitivity at all. I will say after disclosing the inescapable LFN sensitivity I have which is hard to block with ear protection made me feel suicidal caused extreme fatigue exacerbation the dr raged at me that I was refusing to tell him any symptoms
He had no understanding that exposure to the environment takes effort, coping takes effort, that it causes culminative harm. That he was now being another serious problem encountered in my environment that would take days of rest to repair. That unkindness longterm can cause PEM that managing healthcare providers long term can cause PEM that doing frightening things like raging at me in a small room cause PEM.
The patterns in this took a long time to be able to see - why traumatic non-care caused me PEM
I say to myself "we are only one sensorium" we are not compartmented. We cannot save doing chores or listening to a book energy in a special box of that energy. Everything matters. So much of our care is more damaging than it replenishes. So much of our energy goes to managing isolation, loneliness (for example isolation causes measurable changes in inflammation and wound healing is ironically slower) , lack of touch or compassion. Yet we cannot 'afford' to go out in the world to get them.
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Whenever I am having a surge of energy and find myself pulsing with rage and pent up need to DO!!!! RUN!!! KILL!!! ESCAPE because of medical abuse (just a few days ago) or discrimination at work acute event (when I could work) and understanding that the people harming me have caused weeks of pacing and somatic work and therapy; weeks in bed in dark rooms, to shatter on the floor of their office as my inner dragon readies himself for real true present time danger
But I cannot be a dragon now. Though he has saved my life many times. I cannot sustain him. And so I have to pay these people's theft of my life force myself. Sinking further into debt, knowing that for a few days I will feel the dragon fire in my skin. I will feel almost. Human.
But it is an illusion. An illusion I cannot, must not, believe.
“Disabled math” is the constant calculation disabled folks make to survive. Every task costs energy. Every decision carries risk. We aren’t lazy—we’re accountants of our own capacity. Abled people often can’t fathom how intentional we have to be just to exist.
"What Pacing Really Means: The practice of pacing: choosing presence, patience, & self-respect in every decision"
The practice of pacing: choosing presence, patience, and self-respect in every decision.
Blog post by a sympathetic and knowledgeable occupational therapist who specialises in long Covid & ME/CFS. No magic bullets in this. Maybe nothing majorly new for people who have been diagnosed and reading on the topic for a good while.
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I understand why folks can be against “you can become disabled at any time” argument. But, I fear it is being flattened by identity politics. Yes, we should care about someone simply because they are human. However, it’s been my experience this discourse is used specifically in regards to accessibility and internalized ableism to display the fact that disability is inevitable and ableism impacts everyone, so it’s best to embrace accessibility and de-programming internalized ableism now.
For me, it’s less ‘be nice to disabled people because it could happen to you’ and more: accessibility already benefits everyone, ableism is deeply internalized in all of us, and most people will eventually have to confront dependence, limitation, chronic illness, pain, aging, or loss of function. So maybe unpacking that fear now matters.
Also, I honestly don’t think you can fully do anti-capitalist work without unpacking ableism because capitalism fundamentally relies on it.
🧵
Another excellent blog by Fred Rossi who is well worth following
"The Patient Who Isn’t Supposed to Exist"
I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward.
Nominally on the recent, controversial WIRED article but the points are pretty general.
"So the community is not a mob protecting a story. It is a population that watched a treatment paradigm hurt its own members and now flinches when the same machinery rolls out under a new name. That flinch is learned, and it was learned the hard way."
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There is a particular kind of invisibility that happens when you are profoundly sick and your world gets smaller than most people can imagine. When there are things you genuinely cannot do for yourself, yet you also don’t have the capacity to explain your situation, coordinate support, respond to messages, maintain friendships, or make your suffering legible enough for other people to understand.
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