Post Exertional Malaise (PEM) - What is it?
- describes the worsening of your symptoms after minor physical and/or minor mental exertion.
- can occur within 48 hours of activity, leaving you worse for days, weeks, months or even years.
What it DOES NOT describe is that the minor physical or minor mental exertion can come from*:
- sitting up or rolling over in bed
- getting too cold or too warm
- too much light in the room
- a phone call or text conversation
- the noise of a hairdryer, of dishes being put away, the vacuum
*this is not a complete list by any means, it's all I can manage
For me, PEM has been one of the hardest to accept, knowing that the smallest of things will make my symptoms worse.
I genuinely used to think it was something people were wrongly trying to pinpoint because we usually have no other reasons & crave reasoning, so "it can't be from doing ONLY that," right?? Wrong.
I'm already having these symptoms, but now I'm going to suffer more with the symptoms because of some hollow event like brushing my damn teeth??
It's hard to accept because these things did not affect me this way before, but now, I cannot bear them.
Being in a state of PEM is to be in a state of pure suffering. You feel like you're dying but you're not, you're waiting for it to stop.
PEM makes me extremely depressed & all I want to do is be alone. In fact I HAVE to be alone, because everything is too overstimulating & makes it last longer.
It makes me extremely irritable, when I have to strain my way through the day, forcing my head to stay up with my hands, when all I may have done is fold some washing.
Stretching and straining my eyes open like I have been awake for 3 weeks. Trying to stand up but it's like someone in front of you forcing you back down with their body weight, every single time.
I get unbelievably apathetic towards PEM, because "this is who I am now" & I DESPISE IT.
Being ill, PLUS being in a state of PEM is living torture. It's the antithesis of everything I aspired to be. It is NOT ME.