Why PEM Is So Hard to Explain 💜

Morning lovelies ☀️

It's been a while since I've posted. Not since Beautiful Days (which was excellent btw) So, by way of an explanation, let me talk to you all about Post-Exertional Malaise.

So, grab a brew and get comfy, or just stay horizontal if that's all you've got in the tank today, bab. No judgement.

PEM. Post-exertional malaise. Those three little words that basically run the show for a lot of us. Trying to explain it to someone who hasn't lived it is like trying to describe the colour purple to a goldfish.

So I'm going to give it a bash. I'll keep it simple, honest, and probably chuck in too many dodgy analogies, because that's just how my brain's wired these days.

First things first: what is it? 🤔

PEM is when your symptoms get worse after you've done, well, anything really. And 'something' is doing a lot of graft there. Could be physical, like dragging yourself through a shower. Could be mental, like wrestling with a form or trying to keep up with a conversation when your brain's gone on strike. Could be emotional, like a tough phone call or even a nice catch-up that just leaves you wiped.

Here's the kicker: it's usually delayed. You don't pay at the till, you pay later, and it's always more than you bargained for.

The parcel you didn’t order 📦

This is how it goes in my head: every bit of effort you make sends off a parcel. You don't see it leave, and you've got no clue when it's coming back to bite you. Sometimes it rocks up that night, sometimes the next day, sometimes it's stuck in the depot for two days before it lands on your doorstep like a sack of spuds.

And when it finally shows up, you've forgotten what you even ordered. So you're stood there, knackered, thinking, why do I feel like I've been hit by a bus? I've done sod all today. And you're right, you have. It's just Tuesday's parcel turning up fashionably late on Thursday.

That’s why “but you looked fine yesterday” is so frustrating to hear. I probably was fine yesterday. Yesterday is the day I sent the parcel.

The battery that lies 🔋

You know when your phone reckons it's got 40% left and then just gives up the ghost? That's my energy most days. The number on the screen is a filthy liar, and I only find out when it's too late and I'm already flat out.

And don't get me started on the charger. Some nights I 'rest' and wake up at 60%. Other nights, same effort, and I wake up at 15% and wondering what the hell happened. There's no logic to it. Planning anything feels like sticking a tenner on a three-legged horse.

When the walls move in 🏠

This is the bit I wish people could really get, because honestly, it's the bit that scares me most.

A crash doesn't always mean you bounce back to where you were. Sometimes you crawl out the other side and your 'normal' has shrunk. Stuff you could manage before, like a shower or a natter or popping to the shops, suddenly feels like climbing Everest in flip-flops.

I picture it like a room. Your baseline is the size of the room you get to live in. A bad crash can move the walls in a bit. And a smaller room means it’s easier to bump into the walls next time, which can move them in again. For some people, that room gets really, really small, sometimes down to a bed in a dark, quiet space where light, sound and even company are too much. At its most severe, ME/CFS can be life-threatening. 💔

I've been there, bab. There've been times when the walls closed in so much that my whole world was just my bed. And not in a 'lazy day under the duvet' way. Proper bedbound. Days just vanished. I couldn't tell you where they went. I wasn't eating, wasn't drinking, didn't even have the energy to notice I was hungry or thirsty, never mind do anything about it. Completely wiped. Asleep more than awake, and when I was awake, I wasn't really there. That's not tiredness. That's your body slamming the doors shut because it's got nothing left. Getting back from that takes ages, a lot of patience, and being gentle with yourself, even when your brain's giving you grief.

Why good days are sneaky ⚠️

Good days are gold dust. But they're sneaky little sods too. The minute you feel half-human, you want to do all the things: the washing, seeing mates, a day out, all those 'I'll just quickly...' jobs that have been piling up.

That's exactly when you end up overdoing it and sending off the mother of all parcels. Triple first-class, guaranteed to come back and bite you.

It’s also why the old advice to “just push through” did so much harm. For years, people with ME/CFS were put on Graded Exercise Therapy (GET) and told to keep increasing activity, even when it made them worse. The NICE guideline now recommends against GET and any programme with fixed increases in activity. Pushing through PEM doesn’t build you up. It can knock you down, sometimes permanently.

So why do we pace? 🐢

When I cancel, duck out early, say 'not today', or flop down in the middle of the afternoon, it's not laziness. It's not that I don't care or can't be bothered. It's me trying to keep my room from shrinking any more than it already has.

If I can manage a shower today, I want to keep being able to do that. If I can have a natter with the people I love, I want to hang onto it. Pacing is how I try to protect those little bits of normal.

And there's a bit of hope in there too. If I can stop sending off those massive parcels, maybe my body gets a chance to settle. Maybe, just maybe, the walls might start to budge back out a bit.

If this is you 🫶

You're not making it up. You're not weak. You're not making excuses. You're running a body that didn't come with a manual, and you're doing it every bloody day.

And if you love or look after someone with ME/CFS, cheers for sticking with me this far. Next time they cancel or need to crash out, try to remember the parcel that's still in the post. Your understanding means more than you probably realise.

✨ Mantra for the day ✨
“I don’t have to earn my rest. Rest is how I keep my world big enough to live in.” 💜

#WheelyHappyDays #PEM #MECFS #PostExertionalMalaise #Pacing #ChronicIllness #SpoonieLife #InvisibleIllness #MEAwareness #DisabilityAwareness #BurntwoodandBeyondCarers #KOKO

KOKO 💜