PEM Symptoms: My Body’s Accounting Department Has No Mercy

There’s this thing called PEM — Post-Exertional Malaise. Fancy medical term for you only have so much energy and if you overspend, you’ll regret it for days.

For me, PEM is the defining symptom of the ME/CFS that shadows my other diagnoses — the POTS, EDS, and MCAS that are all constantly fighting for control over my system. But frankly, most doctors treat it like a suggestion rather than a biological wall.

How It Works For Me

I have a teeny-tiny finite amount of energy every single day. We’re talking a strict, non-negotiable budget that does not roll over, does not accept credit, and absolutely does not care about your plans. Every single thing I do costs something.

• Shower? Costs so much I can’t even do it without help anymore.
• Make breakfast? Costs something just to consider my choices much less make it.
• Have a conversation that requires more than three brain cells? Costs something.

And when the budget runs out — it’s out. Except with PEM it’s worse than that, if you overspend, your body doesn’t just stop — it crashes. Hard. And for days afterward.

I didn’t always have a name for it. I just knew. I knew that if I walked the whole grocery store I wouldn’t have the energy to make dinner. I knew that most days I had to choose between a shower and taking care of my girls. I knew that doing too much on a good day meant paying for it for the next three.

Have You Tried A Walk?

I started using a mobility scooter at stores because the math was simple, save the energy I would have spent walking so I could spend it on something that actually mattered. I was embarrassed to use one but proud that I thought of a creative solution to my lack-of-energy problem and was willing to use it through the embarrassment.

My doctors? They told me that wasn’t a good idea. That I “needed to move more, not less,” and that exercise would help me feel better. I tried to explain that I only have so much energy. If I spend it all walking the store, I have nothing left. They just gave me that glazed-over smile doctors use when they’ve already stopped listening, and sent me home with the same tired advice.

I want you to understand something. I live in Florida. My house is kept at 68 degrees, everyone but me is covered in blankets, I have a fan on me constantly, and I still overheat! And someone with a medical degree looked me in the eye — while I am drenched in sweat because why are doctors offices so damn hot?! — heard the grocery store story, and asked “Have you tried a walk outside?”

Outside? In Florida? In summer?!

What?!

Getting A Diagnosis Helped — Right?

I didn’t have the language for PEM yet. I just knew the math wasn’t mathing. I eventually got my PEM diagnosis. Validation at last, right? You’d think so…

Fast forward to not that long ago, when in addition to my regular job of picking up my girls from school, I went to one doctor’s appointment. Then I put away groceries. That’s it. That’s the whole story. And by that evening my blood pressure had crashed so hard I could barely move or speak. I chugged electrolytes and refused to go to the ER because what was the point — they’d tell me I was fine and send me home.

I told my cardiologist at my next appointment. He said I needed to exercise more. Seriously? You got cotton in your ears?

PEM And Knowing Your Limits

I’m not lazy. I’m not being dramatic. I’m not refusing to try. I am an accountant managing an account with a balance that would make you cry, and I have gotten very, very good at making it stretch. Every doctor who tells me to just move more is handing me a bill my body cannot pay and walking away like that solved something. Surprise! It didn’t. *rolls eyes*

What actually helps me?

• Pacing: Knowing my limits and respecting them even when every instinct says push through.
• Boundaries: Saying no to things that aren’t worth the cost.
• Maintenance: Horizontal time that isn’t laziness, it’s maintenance, electrolytes, and resting before I need it not after.
• Acceptance: Accepting that some days the budget is so tight that a shower is a luxury item, even with help.

It took me a long time to stop feeling guilty about the math. Or angry, like I’m 44, why is sitting in a pool is exhausting? WTF? Ok, I’m still working on it… But the math doesn’t lie. And my body always, always collects.

Has a doctor ever handed you advice that made you want to flip a table? Tell me about it in the comments.

Keep going, folks and remember, whatever you can do today is enough.