the thing that gets me isn’t just that i’m ill. it’s that i was a pt. for years i taught patients energy conservation and pacing, and now i can’t work at all. eighteen months in and that grief hits harder some days than the fatigue itself.
i know the rules backward and forward, can explain PEM better than most people. but knowing it doesn’t stop the grieving. i grieve the feeling of being useful, of helping someone move better, of understanding my own body well enough to guide others. the worst part is knowing the theory doesn’t actually protect you from any of this.
it’s damage on top of damage. some days i’m ok with it. other days i’m furious that my brain fog means i couldn’t do the job anyway, even if i had the energy. it’s not just about losing work.
it’s about losing the identity of being the person who knew what was wrong with you. does the grief ever actually soften? or do you just get better at carrying it?