singing, still

The heartbreaking thing about post exertion malaise is you go out into the world and it'll be a delicious joy because you hardly ever can. You'll be swept away by how beautiful it all is and you'll convince yourself you can stay out a bit longer, you feel good, you'll be ok. Then you get home and realize it's not ok, you're dying, pain burns thru you like battery acid. But it's too late and all you can do is lie there and suffer and wish you'd done things differently, lived a little less, wanted less, felt less. But you had to try because life's so intoxicating and everything is passing you by - 

And this is why EVERYONE'S advice for "exercise & cognitive behavioral therapy" as a treatment for this is so fucking infuriating. It DOESN'T WORK. Culturally, we have to make a massive paradigm shift on how we treat and think about chronic illness, wellness, what makes a meaningful life. Especially as millions of folks are newly disabled by Long Covid and its PEM. But who in this world that created the problem has the guts to face it? They'll only do it if we make them, and we can't lift our heads because we dared explore the riverbank 15 minutes longer -

Those of us living with disabilities have to run psychological gauntlets just to not feel like total failures, to not shame ourselves with internalized ableism, to feel even THIS LIFE is worth living. It's an endless rollercoaster of exhausting work to manage being so exhausted. While you still contain all your passion, visions, lust for life. And just outside the window birds are flying with your dreams in their wings, dissolving minor key songs -