@robotistry @tomkindlon @longcovid @mecfs YMMV but I've heard from a lot of #PWME that it matters what symptoms you tackle. For me, it's about managing mast cell symptoms and heart rate. So the right way for me to get more energy is to take something that slows my heart rate down so that I don't exhaust myself as quickly. Taking something that makes me feel peppier might seem like the right thing to do, but when I feel peppy it means I'm running too "hot" and my energy envelope gets significantly smaller.

It's such a relief that I can just fully crash now that the worst of the excitement of the past week's emergency is over. I'm impressed that I was able to do as much as I did, even though I was an exhausted, wobbly mess by the end of each day.

I had just come out of a crash when my vacation time started, due to an insurance issue with my sleep meds. Of course, all hell broke loose two days into starting to feel more resilient... But everybody's going to be okay, so I can start recuperating again.

#MECFS #PWME #disabilty

I need a partner status bar that tells me when #ADHD spouse is gone down a rabbit hole and needs to be called home vs when he's working, just task-multiplying and taking a bit longer. 😂

I've been in a bad flare, so I've been dependent on him bringing me food. It's a mystery if the food is even coming, and inevitably he's mislaid his phone if I tried to ping him to ask.

#AuDHD #pwME

#SensoryProductReview

👍🏻 TheraSpecs (specialty tinted glasses)

https://www.theraspecs.com

USE: Light sensitivity aid

REVIEW: I have to wear these glasses all day for them to be effective for me, but they've restored my ability to drive at night, as long as it's not a highly sensitive day already and I'm not cognitively too tired. I still remove them at night in situations with poor visibility (ex: weather) for safety. They are comfortable to wear and reasonably sturdy. Recommended.

#ActuallyAutistic #pwME #NEISvoid #POTS

@mecfs

NOTE: This review is shared from the perspective of *my* personal experience and is not an advertisement for the product. It is intended to serve as anecdotal data to support others with sensory issues.

Folks who use #pacing to manage #PEM #PENE #PESE:

What are your personal early-warning signs that you need to stop now to avoid a crash/flare?

Heart rate? Pain? Dizziness? A certain point of fatigue?

Just curious what signals everyone else has identified. I imagine there will be some variation here, but maybe sharing ideas of little signs that we notice might be broadly helpful.

#pwME #pwLC #fibro #fibromyalgia #LongCOVID #MECFS #ME #CFS #NEISVoid #ChronicallyIll #ChronicIllness

Having an incredible day, just remembered there’s always payback.

#pwme #pene #dynamicdisability

New instance introduction:

I'm self-identified autistic, late enough in the game that it was only a couple of months ago that my decade of questioning ended with, "There's no way I'm not."

#AuDHD is likely, but I'm too tired to unravel that just now.

I'm decades deep into #burnout (big clue once I understood what was what) and have had a lot of losses to mourn. Since recognizing I'm autistic, I've had some of my brightest joy moments of adulthood.

#ActuallyAutistic #pwME #queer