I'm trapped in bed today, curtains pulled tight, life chugging along without me. I can barely move even within the small world of my bed, thanks to a silly misstep on Friday afternoon.
Just one little jolt and there I go. From the top of my head to the bottom of my feet. Nothing working as it should. And searing, don't-move-or-I'll-shoot! pain from one of those joints you don't even know you have until it stops working as it should.
I've been told a couple of times over the years that my joints are "hypermobile," but it took until quite recently for me to realize this was the puzzle piece for which I'd been searching my entire life.
I'd say to doctors: "I hurt ALL the time. If I trip just a little bit, it's catastrophic. It's like I've been hit by a bus."
(And I know what it feels like to be hit by a bus.)
I'd continue, their patience wearing thin: "If I spend 20 minutes doing something simple I love, like bending over a vegetable garden or exerting myself up a hill to catch a fantastic view, I'll pay for it for a week. Maybe more. I get fevers--one, two, three times a month. They break, drenching my bed in the middle of the night. I drag myself through the day. Food makes me sick, but I'm always hungry. I can't chat with a friend with my head turned or I'll be hit so hard with migraine, I'll have to disappear into the dark. Again. I feel faint in the shower. I can't stand still without feeling like I've run a marathon. This is just the tip of the iceberg, the tip of ME. There is something wrong..." And they'd prescribe me antidepressants.
They'd take my blood and tell me I'm "healthy on paper." They'd suggest I cut out gluten,
One told me to come back once I quit my job.
(I quit my job, but I never went back.)
They ALL panic at the size of my thyroid, send me off for tests, and then shrug: "Come back in a year. We'll test again."
(Repeat, repeat, repeat....since I was 7 years old.)
✨Continued in the comments.✨