Why I Can’t Just Meet You for Dinner The Reality of Post-Exertional Malaise

Crashed hard, been gone weeks. Severe post-exertional malaise. Not resting by choice, resting because the alternative is worse. “Why I Can’t Just Meet You for Dinner” explains the economics of it.
#PEM #LongCOVID #MECFS #PwME

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Living With Long COVID Information on how Long COVID can affect you and steps you can take to help manage your condition.

March 2026, CDC: "Living With Long COVID"

'Long COVID is a serious illness that can result in chronic conditions, require comprehensive care, and can sometimes cause disability.'

www.cdc.gov/long-covid/l...

Size Matters Not What Yoda Taught Me About Living Small

I wasn’t afraid either, back in 2021 when I first got sick. I thought I just needed to push through. I thought capability was about willpower, about refusing to let limitations define me. Post-exertional malaise #PEM taught me otherwise. It taught me very, very quickly.
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Invisible Weight Yesterday was rough.

I wrote these lyrics in August 2015, but have no experience making music so I used Suno AI to craft the music and vocals.

open.substack.com/pub/centerle...

“That metaphor is almost too precise for chronic illness. I can see everyone. I can hear them. I can interact with them. But there is a barrier between their reality and mine that no amount of explaining seems to penetrate.”

The Loneliness of Being Misunderstood There is a quote that circulates online, often attributed to George Orwell, about the particular cruelty of standing in a crowded room and feeling invisible.

A quote from my piece, The Loneliness of Being Misunderstood, about the invisibility of having #LongCOVID & #MECFS. #PwME #ChronicIllness

“The quote, whoever actually wrote it, describes standing behind a glass wall, hoping someone will look through and truly see you.”
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If I had any musical talent, those lyrics would actually become songs. As for my vocals, the only way I’m getting on American Idol is if they’re doing a ‘worst of’ episode. I’m sorry you’re suffering from this illness, even if it means you’ll understand these lyrics better than most.

Ten days horizontal in a dark room. The deepest #PEM crash of my life. When I’m upright, everything gets worse. I’m scared. #PwME #LongCOVID #MECFS

artist's impression of life: with 5 sections: before ME; mild ME; moderate ME; severe ME; very severe ME

M.E.: "How it can shrink one's world, bit by bit" by Kornelia Paulsen (who no longer appears to be on X or IG).

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #SevereME

Mild #ME? I work PT 2 days/week, yet keep missing shifts because #PEM hits hard. People who’ve been here warn me I’m playing a dangerous game, one that cost them. Healthcare or health? Hell of a question to have to ask, isn’t it?
#PwME #LongCOVID #MEcfs

“And still, I watch the polite nod, the slight shift in eye contact, the change of subject that tells me the information has been received and immediately filed under “things that don’t apply to me.” 3/3

“I have tried explaining post-exertional malaise #PEM. I have described the math.” I have laid out the cause & effect with the kind of specificity that should leave no room for doubt. 2/3

#LongCOVID #MECFS #ChronicIllness

The Loneliness of Being Misunderstood There is a quote that circulates online, often attributed to George Orwell, about the particular cruelty of standing in a crowded room and feeling invisible.

Here’s a quote from my recent piece, titled The Loneliness of Being Misunderstood. It’s focused on the challenges of living with #LongCOVID & #MECFS, two illnesses largely invisible to the general public. 1/3

substack.com/home/post/p-...

The Loneliness of Being Misunderstood There is a quote that circulates online, often attributed to George Orwell, about the particular cruelty of standing in a crowded room and feeling invisible.

A quote from my latest piece, The Loneliness of Being Misunderstood, about the challenges of “invisible” chronic illness.

“I have written before about the brutal economics of living with #LongCOVID and #MECFS. The energy budgets. The interest rates on overexertion.”

substack.com/home/post/p-...

“The five-day recovery cost of a two-day work week. But there is an economic dimension I have not fully explored until now, and it might be the most expensive one of all: the cost of being unseen.”

#LongCOVID #MECFS #ChronicIllness #InvisibleIllness #PEM

The Loneliness of Being Misunderstood There is a quote that circulates online, often attributed to George Orwell, about the particular cruelty of standing in a crowded room and feeling invisible.

A quote from my latest piece, The Loneliness of Being Misunderstood, about the challenges of “invisible” chronic illness.

“I have written before about the brutal economics of living with #LongCOVID and #MECFS. The energy budgets. The interest rates on overexertion.”

substack.com/home/post/p-...

Pushed through three shifts in eight days and now I’m paying the full price. Flat on my back, staring at the ceiling. People kept warning me I could get worse. That’s starting to feel less like a warning and more like a diagnosis.

#PEM #LongCOVID #MECFS #ChronicIllness

Here are some lyrics from my song, Invisible Weight, about ME/CFS and Long COVID.

“The air outside tastes like another life
I watch it from the window, can’t join the fight
Every plan I make can turn on a dime
One good hour can cost me days of time”

#PEM #LongCOVID #MECFS #ChronicIllness

Invisible Weight Yesterday was rough.

I’ve been on my back all day, staring at the ceiling, “making friends with shadows on my wall.” I wrote earlier about how work went yesterday. Spoiler alert, I’m in a #PEM crash.
#LongCOVID #MECFS #ChronicIllness

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So uh I own this beaut now! Looks even better in person plus there's a little bonus Elec Man sketch. And a rad Mega Man zine full of @cak3oman.bsky.social's art and a sweet postage stamp sheet. Made my day, thank you so much cak3o!

Thank you.

Invisible Weight Yesterday was rough.

I’ve been on my back all day, staring at the ceiling, “making friends with shadows on my wall.” I wrote earlier about how work went yesterday. Spoiler alert, I’m in a #PEM crash.
#LongCOVID #MECFS #ChronicIllness

substack.com/home/post/p-...

Back in August I wrote lyrics, and I used AI software to put them to music. I’ve been sitting on it, nervous about putting it out there. Here it is.

There’s a reason I’m telling you this now.

I’m not a musician. I respect musicians too much to even suggest that I am. But most of you know I’ve been writing.

That makes treating my #LongCOVID and #MECFS a lot harder than it already is, because I can’t use NSAIDs like ibuprofen. Yesterday the pain was bad enough that I took some anyway, just to knock the edge off. It helped.

I’ve never talked about this publicly, but I was diagnosed with stage 3B kidney disease ten years ago, when I turned 40. I was born with a single kidney. It’s in my abdomen and not fully formed.

Invisible Weight Yesterday was rough.

Yesterday was rough. The migraine hit at 9:30 in the morning and never let up. Blurred vision all day. Dizzy. Nauseous. Holding on to walls, shelving, tables just to stay upright. It lasted my entire shift.

#LongCOVID #MECFS #PEM #Crash #ChronicIllness #Music #Song

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I’ve never talked about this publicly, but I was diagnosed with stage 3B kidney disease ten years ago, when I turned 40. I was born with a single kidney. It’s in my abdomen and not fully formed.

I am. Hoping to make some changes later this year. Beth, my wife, carries so much. I work 16 hours a week, provide healthcare, and honestly not much else. That’s the reality right now.