Oh fuck I’m crashing!

Sit…

Breathe…

Get pulse down…

Did I do too much just now? Was hardly anything! Overdid it yesterday? Felt mostly ok. The errands the day before? Thought I paced myself well…

Body aches…Nausea…Fog…No no no I really have to get to work—

*let it go, forgive yourself, back to bed, rest, day over*

Trying to gauge activity capacity is hard when post exertion malaise can hit 0–72h later with a big hard NOPE

#PEM #MECFS @mecfs #LongCovid

Righto. Random shower hack for the permanently exhausted.

I swapped the one-piece shower curtain on my corner shower for a pair of curtains for *style* reasons and suddenly showers are enjoyable again! I think it's because I don't have ALL of the steam in there with me any more. YMMV etc

New curtains happen to be blockouts (right look, size, price) but I don't know if that's essential

#Fatigue #PEM #MECFS #LifeHack

You can't talk about Post-Exertional Malaise (PEM) without mentioning ME/CFS. The term PEM was created to describe the unique manifestation occurring in people with ME/CFS.

If you separate PEM from its history and origin, you perpetuate the stigma surrounding ME/CFS. We need visibility and spread of knowledge.

#MECFS #Stigma #pwME #MedMastodon #MedEd #HistMed #HistoryOfMedicine #Medicine #PEM #PostExertionalMalaise @mecfs @historyofmedicine

You can't talk about Post-Exertional Malaise (PEM) without mentioning ME/CFS. The term PEM was created to describe the unique manifestation occurring in people with ME/CFS.

If you separate PEM from its history and origin, you perpetuate the stigma surrounding ME/CFS. We need visibility and spread of knowledge.

#MECFS #Stigma #pwME #MedMastodon #MedEd #HistoryOfMedicine #PEM #PostExertionalMalaise @mecfs @historyofmedicine

@trekhausen
Am I being too cynical to suggest this is a trial balloon to test possible official responses to a looming disability crisis?

#LongCovid #PEM #pacing #MECFS #Covid #CovidIsNotOver #CovidIsAirborne #SpoonTheory #Spoons #Disability #DisabilityJustice #LongCovidJustice

Just had one of my worst experiences since having #LongCovid - I felt so poorly this morning too after a bad night sleep, but dragged myself to an online video group chat with the NHS Long-Covid Hub. Basically the facilitators said a load of shit about how the symptoms aren't often based on anything actually being physically wrong and there is often no lasting damage (yeah, they said that with confidence) and that it is about "reframming" the brain and its response to symptoms when doing various activities. They tied this into Somatic tracking etc. I was the only one in the group that spoke out on this by saying that I was concerned they were suggesting the symptoms are in our mind rather than being the physical reality they are - for instance, they were citing that tests often say we are fine or the fact symptoms fluctuate as evidence for what they were saying. They responded by coopting terms like #PEM and #pacing but the message was for the majority of people with Long-Covid there is nothing to really worry about as it's not physically harmful and rather about retraining the brain.

I was so mad and angry and felt so isolated. Then the facilitators spent the rest of the session periodically saying things that seemed directly related to me challenging them, for instance this included: "[to the group] I am so glad you have taken it on board and seen it for what it is." "It is neuroscience" "Not going to resonate with everybody" "we are providing evidence based options". Sadly noone else spoke out and backed me up and actually people in the group backed them if anything about how useful it was (I know this will sadly include people that are new to this shit and won't know the history of this well documented by the ME/CFS community). It just added to the sense of isolation I felt. Horrible experience.

This is something I haven't experienced at the Long-Covid Hub before and seems to clearly tie into the government's agenda around Long-Covid and how they want people with Long-Covid to get back into work, as they argue being out of work for longer makes it worse etc. Retrain and reframe those symptoms at work to see the "benefits" of being a "productive" part of the system kind of BS. Oh and of course, the main facilitator has had Long-Covid and they said they used these techniques/approach to recover from it.

In sum, it was all about promoting individualistic approaches and psychologizing Long-Covid. It's the exact same thing many have been doing to people with #MECFS for years; for instance, see here I found from a quick search: https://www.healthrising.org/blog/2019/11/11/somatization-myth-chronic-fatigue-syndrome/

I am glad I said something but sad I was the only one. I also feel gaslighted. And the Hub is the main source of support I get as someone who has had Long-Covid for 3+ years. Thankfully, but also sadly, I know that there are a lot of people here on Mastodon that understand how I feel and why I feel this way.

#Covid #CovidIsNotOver #CovidIsAirborne #SpoonTheory #Spoons #Disability #DisabilityJustice #LongCovidJustice

Went downstairs and emptied the dishwasher. Took maybe 20 or 30 minutes. But there was a lot of bending involved. I'm hurting and exhausted. I hate being chronically ill.

#spoonie #ChronicPain #SummerCold #PEM

Here's the CDC on ME/CFS and "Post-exertional malaise (PEM)".

Treating the Most Disruptive Symptoms First and Preventing Worsening of Symptoms | Clinical Care of Patients | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC

#spoonie #ME_CFS #PEM #fatigue

https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/treating-most-disruptive-symptoms.html

And even as someone who's had PEM symptoms for years, I was also quite surprised how much science knows about the mechanism of "fatigue."

#spoonie #PEM #ME_CFS #fatigue #LongCovid

Radio Atlantic: Fatigue Can Wreck You - The Atlantic

"As a medical term, fatigue seems suspiciously unspecific. Is it just the common tired we all feel, but extra? Is it more like a bad, long day? A state of mind? This lack of clarity made me assume that “fatigue” was a medical mystery and thus impossible for doctors to diagnose or treat."

1/2

#spoonie #PEM #fatigue #LongCovid #ME_CFS #Dysautonomia

https://www.theatlantic.com/podcasts/archive/2023/08/fatigue-can-wreck-you/675030/

"Fatigue is profoundly anti-capitalistic", from the conversation between @edyong209 and Hanna Rosin on fatigue for Radio Atlantic https://www.theatlantic.com/podcasts/archive/2023/08/fatigue-can-wreck-you/675030/ #MECFS #LongCovid #PEM

Wenn man eh schwer und unsportlich ist, ist #PEM (habe ich überhaupt post exertional malaise?) fatal, ein sich selbst verstärkendes System.
Ich traue mir selbst nicht (mehr), und ich traue mir immer weniger zu. Ich erwische mich bei Vermeidungsstrategien (nicht radfahren, Spaziergang aber mit einer Station Straßenbahn). Ich bin dünnhäutig, reizbar, unzufrieden. Und müde, so müde.
Dabei geht's mir noch Gold - ich funktioniere im Alltag, kann arbeiten, Familie u Hobbies pflegen, Freunde treffen.

Bateman Horne Center:
Post-Exertional Malaise (PEM/PESE): Clinical Attributes, Part 2 of 7

https://youtu.be/84BVPaGdSJU

This video series is intended to review the clinical presentation, scientific underpinnings, and treatment approach for patients with post-exertional malaise (#PEM)/post-exertional symptom exacerbation (#PESE).

#MEcfs #CFS #MyalgicE @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #longcovid @longcovid

Inconvenient crash.

Well. Most are.
#LongCovid #PEM

"Long Covid has derailed my life. Make no mistake: It could yours, too.

Some days, #LongCovid feels manageable. Others, it feels like a crushing mountain on my chest. I yearn for the casual spontaneity and scope of my old life. I miss the friends and family who have moved on. I grieve those lost forever."

https://www.washingtonpost.com/opinions/2023/08/09/madeline-miller-long-covid-post-pandemic/

#PostCovid #COVID19 #PEM #fatigue

You don't know till you know, and then it's too late.

Having a rough cognitive day. Getting easily overwhelmed and "breaking" is a REAL THING.

We're not making this shit up.

And BTW, the #boosters alone are not enough to protect you from getting #Covid. #MasksWork

Wear an #N95 for your own damn good.

Or don't.

But when it's too late, you'll know.

I'll try to point you in the direction of specific data. Ask.

#LongCovid #PACS #PEM #CovidBrain #CovidIsNotOver #CovidIsAirborne

@mmdolbow

You'll know.

Unfortunately, those of us w/ Long Covid know from reading your toot.

Compare this now, to a time in the past when you've been inactive for a short period. Different?

Unasked for advice: listen to your body. If it says rest, rest. If it says nap, nap.

Check out the hashtags #PEM and #LongCovid

Personally, I've noticed some is a lack of fuel and I need to eat more often especially when I need to think or do physical things. That last 1/4 tank of gas goes FAST!

Here's a thread by Yong for a scannable TLDR version:

https://nitter.snopyta.org/edyong209/status/1684549672386576386

#meCFS #longCovid #PEM #disability

I've said it before, & I'll say it again -- if you have COVID, if you think you have COVID -- do not "push through it". Rest.

#meCFS #longCovid #PEM #disability

Since the pandemic's beginning, a massive and mostly invisible population of newly disabled people joined those already suffering from other post-viral chronic illness.

Every one of us would do them a service by understanding a little more the profound difference in their suffering to everyday "tiredness" - including the characteristics of Post-Exertional Malaise (PEM) - the painful crash that can follow over-exertion --

#meCFS #longCovid #PEM #disability