How do you pace?

Alinda

Established Member (Voting Rights)
It sounds quite "simple", just don't do the things that cause PEM, but I am struggling to pace so much!

My PEM is delayed by about 48 hours, which has made it hard for me in the past to recognize correlations in the first place. I think I can usually recognize what activities caused PEM now, but I still cannot figure out a clear idea of when I can handle things.
It does not help that I spend the first 2 years (3+ years now) of being ill pushing trough and doing CBT, GET and pacing up approaches and experiencing constant "force" to go to school! The things that were said to me often creep into my mind, and it's a constant battle against these thoughts saying that I need to "just do sports" and to "not think about your symptoms"...

I currently track my FUNCAP score every month, use a smartwatch (which I can only really use for step counting, as the "stress" levels seem completely random and disconnected from how I feel, same as the amount of POTS or my hr) and track some symptoms weekly (pain, sleep, eating difficulties, fatigue and brainfog).


I would love to hear some strategies people use!
 
I have an idea of what I can manage in a week, and try to keep to that.

It's varied a lot over the years, but when there's been a change in severity I've always reached a point where I know (a) roughly what I can do without too much payback and (b) how I need to schedule it, given that some things need more rest days than others. I'm also willing to drop everything if significant PEM kicks in.

I've never used scores or symptom tracking, but only because I haven't the patience. I can always think of something more interesting to use the energy on! It does seem to help some people, though, if you can do it without feeling as if you might expire any minute from the sheer boredom (I've either got a really camp drama queen living in my back brain, or it's the ADD).
 
I have an idea of what I can manage in a week, and try to keep to that.

It's varied a lot over the years, but when there's been a change in severity I've always reached a point where I know (a) roughly what I can do without too much payback and (b) how I need to schedule it, given that some things need more rest days than others. I'm also willing to drop everything if significant PEM kicks in.

I've never used scores or symptom tracking, but only because I haven't the patience. I can always think of something more interesting to use the energy on! It does seem to help some people, though, if you can do it without feeling as if you might expire any minute from the sheer boredom (I've either got a really camp drama queen living in my back brain, or it's the ADD).
How much payback is acceptable for you?
I think I may be struggling a lot with "deciding" that, I obviously avoid things that cause significant PEM, but the smaller problems where I "simply" get a headache and cannot go outside for 4 days just doesn't feel that impactful (when I am not in that state, when I am in this kind of milder PEM I absolutely regret doing too much, I just don't really remember it well enough to relate to my previous experience.)
 
How much payback is acceptable for you?

Not feeling really ill, basically.

If I wake up with a very swollen throat that persists for more than an hour plus other 'flu-type symptoms, that's the start of "proper" PEM. I need to prioritise recovery above any non-essential activities.

If my throat's just a bit lumpy and the soreness passes off, that's "acceptable" PEM. It's not going to be a great day, but I can still do things like logging on here, listening to podcasts, maybe a bit of reading etc. to distract me from it not being a great day. More importantly, it'll not last longer than a day or so and I'm not at risk of compounding it by doing necessary stuff.

Everyone's underlying capacity level is different, and everyone probably has different warning signs indicating how bad it's going to be. If I can limit "acceptable" PEM to no more than twice a week, I'm coping and not likely to head into a crash. "Proper" PEM is a big red flag though.
 
Back
Top Bottom