20 Things ME/CFS Post-Exertional Malaise Feels Like

A significant factor of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is something called “post-exertional malaise,” or PEM. It sounds like how a healthy person might feel after a short jog on a warm day, but I think it should be called something more dramatic, like “THE AFTERSHOCK,” and always written in capitals in medical notes. It’s the varying degrees of massive exhaustion, and for me, joint and muscle pain which occurs after activity.

Each day involves multiple choices as to how you use your limited levels of energy. Often it may be that you have a small amount of energy, so you use that up and go beyond what you can really manage, like entering an unarranged overdraft. You can go into it, but you will pay big time. Sometimes the PEM hits quickly and can be a result of the completion of a relatively small task, such as carrying a large object to the bin. On another occasion, it may be a matter of going out to the pub and the PEM crash happens the next day.

PEM is like a mysterious ticking time bomb. Sometimes the crash doesn’t happen for a few days, and you’re lulled into a false sense of security where you think that perhaps you’re on an upwards trajectory. You push yourself further and harder, bigger tasks and longer activities, and then it comes like a tsunami. On these occasions the crash is all-encompassing, and for me, causes my limbs to feel like they’re crumpling. I have a greater sensitivity to light and sound. This sensitivity is already an everyday thing, but when THE AFTERSHOCK comes, the sound of cutlery being placed on a table feels like the knives and forks are actually clanging inside my brain to a very high pitch. I’m still learning how to prevent myself from pushing beyond my limits, but this careful balance seems like an impossible objective. It’s like you need to be a mystic, or as wise as Splinter from teenage mutant hero turtles.

On Saturday I went to Wetherspoons for breakfast with four friends. I upped my game and did the conversation, I survived the noisiness. I enjoyed myself. We talked about normal bloke things, like Brexit and house prices. I might have looked OK, but I felt like I was blagging it to my body, “Let’s just get through the next half an hour, don’t let me down. Keep being normal, and brain, don’t replace an intended word with something stupid.”

People with chronic illness often talk about having a certain amount of spoons to use during the day, and you choose how you use those spoons. I used all my spoons and still came home and did some tidying up. I knew I shouldn’t have tidied, but when you have energy, you start to use it like a drug.

On Sunday I crashed. My time bomb went off around 24 hours after I got back from the pub. I wilted like a plant in the heat, spending most of the afternoon in bed. You always know THE AFTERSHOCK will come, it’s just a matter of time, and severity. Over the past couple of days since my fated pub visit and tidying mission, I made a list of the things that choosing to push beyond the limits, and the resulting PEM is like:

1. A bet you take, already knowing 100 percent you’ll lose.

2. A fire you start, knowing there’s no way to put it out yourself.

3. A lemon you buy, knowing the wheels will definitely come off.

4. A panto horse where you’re always the behind.

5. A flight you choose to board, despite being informed that there’s only one engine operational and even that’s a bit iffy, but a risk you’re willing to take.

6. A kebab from the place you were previously food poisoned.

7. A meet and greet you pay for, knowing your idol will swear at you and stamp on your foot.

8. A loan you take, understanding the toll it’ll take.

9. A job you accept, knowing that you’ll have to pay to work.

10. The party you revel in, knowing your hangover will last for weeks rather than a day.

11. Jumping down a well, when you know you might be stuck there for days.

12. The match you go to, knowing your team will be thrashed, every time. It’s a mug’s game.

13. The seeds you sow, knowing there’ll only be weeds.

14. The door you open, knowing the slasher is waiting. Pandora’s box, too enticing to resist.

15. The email attachment you click upon, knowing a virus is hiding.

16. The daydream at the bus stop, knowing the driver won’t wait.

17. Drinking all the water on a sweltering day, knowing the river is 20 miles away and you have to walk.

18. Standing by a deep puddle in the rain knowing a boy racer is burning up the road.

19. Driving into the safari park with the windows down and the sunroof open.

20. Knowing you’ve accidentally set your alarm for 4 a.m. but not bothering to reset it.

I exert and I wait for the monster to take me.

Time to break. Time to fall.

Is it, was it, worth it? You’d need an accurate definition of worth to decide.

In reality, only time will tell.

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