Poll: What is your most disabling symptom?

This!!

 

I have picked sleep problems because it is the issue currently bothering me most. I am regularly getting no sleep at all which makes the pem easier to trigger, the OI is worse as are the cognitive issues and pain. Previously I would probably have selected pem or maybe OI.

 

Same here. I lost a few £thousand a few years ago because I could no longer fill in forms to claim benefit. 'Luckily' I then received my work pensions.

 

Indeed it is all of those things. You feel that people think you are an idiot, as you just can't find your way through the fog and understand what they are saying or what you were intending to do or say.

 

To illustrate this point, over a decade ago I was trying to get on a bus. The driver was saying things, possibly because I was having trouble with the new ticket system. I had no idea what he was saying. So he said it louder, thinking I was deaf. After a couple of tries he started enunciating very distinctly, slowing down his speech till I could follow it.

On another occasion I am sure the driver thought I was stoned.

 

Thanks—I even think there was another one.

 

Cognitive impairment probably. At least if it was only physical fatigue, I could still do online classes, do remote work, or have conversations longer than a few sentences.

 

For me it has always been exhaustion (fatigue). I don't have the desire to sleep through the day, but I wake up exhausted as if I had already had a busy day, and I go to bed at night even more exhausted. It has been this way now for the past 33 years.

 

I guess at the moment it's PEM, just with a slight edge over other problems. The reason I chose PEM is because I always have to think about every little thing I do and the potential trade-off.

Cognitive issues, lack of energy are very debilitating in their own right. If it was just that I could simply lie down or skip over some stuff I couldn't comprehend at that time.

PEM just requires so much planning around. Do I go throw a ball with my nephew for a bit or is that gonna land me in bed for the next 2 days?