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From what I'm reading is that it's not delayed/post for everyone, for some it's constant and yet some are able to work full time in a constant state of "PEM". Is it because they don't have OI? Is it the OI patients that have worse PEM?
There have been two periods in my life where I have worked or studied while in constant PEM. The outcomes were very different.
The first was while I was at university before I knew I had ME. At that stage, there had been no infectious trigger (yet) but I'd had severe IBS several years earlier and that was the start of my problems, subtle at first. In a six month period I went from a state of basically being abnormally tired in varying degrees for some unknown reason to accumulating one new symptom after another because I kept pushing, pushing, pushing. In mid January I had a chest infection. I went to my GP, he gave me antibiotics and from then on I can recall nothing for about the next ten days. Complete amnesia. I went to at least some of my lectures, though. Nicely dated notes but otherwise totally incoherent. When I 'came to', it was clear that I was even worse than I'd been prior to the chest infection. I wasn't able to go back to lectures (absolute mince for brains, could barely read a word let alone a sentence) and eventually I withdrew from my course. I can't say what would have happened without the infection but the situation definitely wasn't sustainable.
While I was going through all that I had no idea that there was any connection between activity and symptoms.
Only when I'd had the chance to rest did it became obvious. It was also apparent that I was often worse the day after doing more than usual.
Fast forward about twenty years, which was five years ago. For about ten years during the intervening period, I'd recovered enough to be able to play sport but I wasn't in full remission. Then for a couple of years prior to the relapse I'm about to describe, I couldn't sustain anything above a walk but I was otherwise stable and not particularly symptomatic.
So, during this particular January, my desk was moved to a hotter part of the office. Like a lot of pwME, I don't tolerate heat well and I started to sleep very badly. Three months later I was almost fully symptomatic again. And I got worse and worse because I had to keep working. The difference between then and the first time was the internet. I found the ME Association survey on treatments. One of the most highly rated for efficacy and safety was Perrin; it's no cure but it saved me from what was otherwise inevitable.
How can their PEM be the same as what I'm experiencing when mine is delayed for 16hrs and I"m unable to stand upright, slurred speech, racing heart, unable to put 2 sentences together etc etc? If I were in that constant state of I would eventually end up in the emergency room. PEM for me is a very distressful physically and emotionally. I can't imagine being in that constant state. I would kill myself.
If you are being constantly challenged and working 7.5 hours a day, there's only exacerbation. Who can tell what is immediate post or delayed post? The weekend is a relief but not long enough to recover. Slurred speech? Yeah, been there. Every day when in constant PEM. Imagine the sideways looks from your colleagues, especially when you also can't walk in a straight line, are easily confused and slow of thought. Distressful physically and emotionally? Very.
In all honesty, though, I don't view ME as a competitive sport. I don't doubt that your PEM is worse than mine has ever been, even after mine has been accumulating day after day for months on end. I'm not unbreakable but I appear to be relatively robust as pwME go.
some are able to work full time in a constant state of "PEM". Is it because they don't have OI? Is it the OI patients that have worse PEM?
I think you're onto something here but I don't believe it's the full story. I survived what turned out to be five months of deterioration/constant PEM and improved again without going off sick from work. But earlier this year, I crashed badly and my ANS got battered. I went from being able to walk a couple of miles comfortably to being barely able to stand long enough to make myself a cup of tea. I've been off work for months. During this period I've had a sore throat often but it has generally stopped short of going into fluey symptoms, so there's not a lot of obvious signs that my immune system is going bonkers.
FWIW, I don't currently get what I consider to be classic delayed PEM, which I always think of as involving malaise (feeling fluey) as well as delay. But I get delayed fatigue and impaired cognition. Post exertional
malaise may not be a very helpful term.