I am currently in that state that chronic illness patients know all too well: I’m too sick to be functional, but not sick enough for anything but waiting to see my specialists. Whatever is going on, it’s not acute, so the hospital can’t help me and I don’t want to burden them with “we’ll run some tests and tell you to see your GP and specialists” when COVID is going on. But whatever is going on, it’s too much for my GP to deal with, and while I wait for my specialist to be available (it was only a month this time!) I am extremely non-functional.
This is a common story for people with chronic illness, because holistic care is still rare and the system is still ridiculously under-funded and under-supported. I’m lucky that my cardiologist is completely covered by Medicare and bulk-bills. My endocrinologist, who is the only endocrinologist in Australia who really understands and manages autoimmune hypophysitis, is only partially covered by Medicare and, because she’s an excellent doctor, is booked out months in advance. I can’t see her again until the end of January, although she’s good about responding to emails when things are urgent.
The thing about me specifically is that I am extremely complicated. Nothing about me follows conventional medical wisdom, and that’s frustrating, because if it did, I’d know what to do. As it is, I had nightmares last night that meant I woke up having a panic attack and now I’m having an adrenal crisis, because that’s a thing that can happen now. Whatever is going on with my heart, I can’t so much as walk from my desk to the fridge to get a glass of water without getting a severe bounding pulse. My muscles are a mess – I have no strength and no resilience in them anymore. Walking, along with giving me the bounding pulse to worry about, also makes my legs and back ache in that way that means your muscles aren’t getting enough oxygen, rather than the “carrying too much weight” way. (I know I’m too fat. It’s a different sort of pain; you get able to tell the difference after a while.)
So right now, while I wait to be able to see my specialist and go “hey, I’m non-functional, what’s going on”, I literally can’t leave the flat. I can barely manage in the flat. I’m lucky to have the Engineer and the Collector, who have both been incredibly supportive this last year. I hate to think what people in my situation who don’t have my support network are going through.
So this is my limbo, which is not a fun dance. I don’t even want to think about dancing right now. But one day I will dance (in the pool) again. I’m determined that that will be so, and I’m the queen of the universe, so that makes it fact, doesn’t it?
The Medical Snowflake Diaries 