“My child with CIDP (a chronic neurologic illness)”
Jesus, that's a lot. I DON'T understand what you're going through because I've 'just' got neurodivergence with my kids and self + my fibro but I surely do empathize. All the hugs. My mom was in the hospital for two weeks last year before they figured out that she didn't have a pinched nerve in her neck but Guillain-Barre. She had IVIg therapy and improved SO fast. I am so glad that therapy exists for these myelin-related disorders no matter how it works.
*just got kids with neurodivergence & fibro* lol. Like that’s not more than a plateful!
My oldest is grey-Aspie and ADD and caused me sooo much stress and worry. I don’t know how old yours are, but Griffin just started college, and he’s doing GREAT, socially and emotionally, and evidently 15 years of struggle (and the right meds) eventually yield results, so keep your head up, my dear.
Fibromyalgia sucks. It’s another of those invisible diseases that no one can see (most of the time), that is very hard to measure and prove, and so no one believes. My sister and my mother in law both have it. My mother in law is diligent about diet, exercise, schedules -- all the things they recommend -- compared to my sister (who is homeless and jobless and also schizotypal, and has come to deny the fibromyalgia in recent years, instead blaming everything on being vaccinated as a child) and it’s interesting to see how vital it is to manage that illness. MIL is functional, and sister is not.
Sometimes I see posts about disabilities assistance going around, saying things like ‘be sure you never post pictures on fb of yourself having fun’ or ‘you can never get even a part time job’ because then you’ll lose your stipend, and it makes me think of people like my son, who are fine sometimes, even most of the time, can run and play and do chores and simply... be an unconcerned person. But sometimes they just say “I don’t feel like it today” and... it’s true, there’s a medical reason for that... but an outside observer has no way of being able to tell. It makes me feel so angry and helpless.
