Poll: PEM Frequency vs. Severity Level

[jasperfw]

I am wondering how PEM frequency relates to severity level.

 

[Arius]

I don't understand the options or know how to respond to this.

First, there's no agreed upon criteria for what makes someone mild, moderate, or severe. I am in different categories depending on whose criteria I use. I generally consider myself somewhere on the cusp of moderate to severe, but someone else might classify me differently.

Second, I pace myself rigourously specifically to avoid PEM. And it's hard for me to even conceptualize how often I am experiencing PEM or for how long. I have good and bad days, there are myriad factors for this - how well I slept, how well I paced myself and adhered to my nap schedule, how much stress I experienced, etc. I have no idea how to put a number on that, and I'm not sure it's relevant since how much PEM I experience is a factor of how well I pace myself. My goal is always zero PEM. Some days I achieve that, some I don't. How much of the average day is lost to PEM I can't really say, particularly since I take scheduled naps for much of the day as a preventative measure.

 

[maddietod]

I don't think there's a relationship. You might find one in some people newly ill, but that would be because they've reached a steady state of triggering PEM : severity level.

 

[jasperfw]

I don't understand the options or know how to respond to this.

First, there's no agreed upon criteria for what makes someone mild, moderate, or severe. I am in different categories depending on whose criteria I use. I generally consider myself somewhere on the cusp of moderate to severe, but someone else might classify me differently.

Second, I pace myself rigourously specifically to avoid PEM. And it's hard for me to even conceptualize how often I am experiencing PEM or for how long. I have good and bad days, there are myriad factors for this - how well I slept, how well I paced myself and adhered to my nap schedule, how much stress I experienced, etc. I have no idea how to put a number on that, and I'm not sure it's relevant since how much PEM I experience is a factor of how well I pace myself. My goal is always zero PEM. Some days I achieve that, some I don't. How much of the average day is lost to PEM I can't really say, particularly since I take scheduled naps for much of the day as a preventative measure.

Of course everyone‘s goal is zero PEM, and of course it depends on how well you pace. It sounds like you do rather well with pacing?
And I think most people can say what severity level they are - I don‘t think that many have such strong fluctuations that their severity level changes frequently, except if you‘re in between two levels. But if you‘re exactly between mod and severec, I‘d say just flip a coin for the poll.

 

[jasperfw]

I don't think there's a relationship. You might find one in some people newly ill, but that would be because they've reached a steady state of triggering PEM : severity level.

I dunno. Maybe people some are more severe because they have some intrinsic propensity to crashing?

 

[maddietod]

I dunno. Maybe people some are more severe because they have some intrinsic propensity to crashing?

Maybe! But you won't find those people through a general poll. There are so many reasons we crash, and so many reasons for severity levels.

 

[maddietod]

And I think most people can say what severity level they are - I don‘t think that many have such strong fluctuations that their severity level changes frequently

Severity level is determined through questions in categories. If you're mild, or severe, across all categories, it's easy. If you can answer all of the questions, bingo! But if you're mild in some areas and mid or high moderate in others, your functional severity depends on what you're trying to do. Also, we can be temporarily more severe in, say, hot weather or noisy environments.

I fluctuate a lot between high mild and mid moderate, which means that some days/weeks I live on the couch, and sometimes I go out for a few hours on an adventure with a friend. I think there are lots of us.

 

[southwestforests]

Just now saw this, and thanks to PEM today & the effort put in to doing things today anyway is not reducing PEM, so, brain looks at the answer options and goes "Huh? What?"

PEM happens a lot for me. Severity varies. It sure gets in the way of living life.

Can already tell is time to close this laptop again & lie back and likewise close eyes.