My roommate was reading The Parasite Underground and quoted me the bit about trying different drugs, doses, timing:
If you have a terrible reaction to hookworm — which isn’t uncommon — you might start over with smaller doses, and gradually introduce larvae over a longer period of time. Different organisms might also work for different disorders.
And while I can’t say that’s not a helpful thing when you’re trying treatments for any chronic illness, the EXPECTATION that once you get sick, you must always be trying something new, something else, an old thing at a different dose, taking the pill at 4pm instead of 7am, etc. is just exhausting.
I’ve been trying to get better for 25 years. And I’m so tired of it. New drugs and treatments with new side effects every few months, pushing through work with treatments that should be temporary for months until I crash, convincing my supervisor I’m not a malingerer because “my doctor and I are trying new solutions,” spending money I don’t have on weird devices and supplements, doing work I don’t have energy for because I gotta get $$. It’s exhausting.
Sometimes I wish I could just give up on getting better, accept how sick I am, and get $25,000/yr to play with data and make graphs and bake cookies and read books and garden and lie in bed with my lovers and write and draw and nap and take care of myself.
I guess even well people feel like that.