Welcome to your irregularly scheduled 2am void-screaming, brought to you by the fact that crying in my CPAP mask is counter-productive to getting a good seal and my brain going round in circles makes it hard to sleep.
People have been telling me a lot, these last eighteen months, that I’ve made a good decision, that I’m doing really well, that they’re proud of me. And sure, that’s nice and validating, but at the same time, it wasn’t really a decision any more than it’s a decision to try to catch yourself when you fall. I was dying. My doctors said “this might help” and I didn’t have anything to lose by trying, so we tried. It’s working so far. I don’t regret the procedures or the medications or the lifestyle changes I’ve made, but at the same time, they’re not things I decided to do; they were things forced on me by the wreck that is this stupid, maladaptive body. I feel no ownership over them, like I feel no ownership over having to take insulin. What’s my other option here? Do nothing and die before 40? Sure, let’s go with that. I have suicidal ideation, but I’m not going to put my loved ones through watching me die the sort of death I had coming.
And that’s the thing that I think a lot of people still don’t fully get, because I wasn’t talking about it and we didn’t know the extent of how bad things were until I was in hospital finally. I was dying. My system was shutting down. My organs were under so much stress from the levels of oedema in my abdomen – not fat, fluid. There is so much wrong with my pituitary and nothing was coping, and I still downplayed it because hey, I was in hospital and getting treated now, it was okay, right?
Except it turns out PTSD doesn’t work that way, and the medical trauma nightmares I’ve been having, where I suddenly have to have surgery again, or I’m in hospital and it’s all my fault, or loved ones are dying (a new one! Not a welcome one!) are a very not-fun reminder that hey, I maybe haven’t actually processed all of this bullshit very much yet.
[Interlude: the Engineer woke up around this point and found me crying. We hung out for an hour, I went and played done Rimworld when he went back to bed, and then the boy cat came and sat on me. Sleep happened. It’s now 4am on another night, and I am more introspective and less weepy.]
So I haven’t been sleeping well lately, and by lately I mean for the past year or so. I get a few hours, maybe three or four, and then a very vivid dream wakes me, and I’m the sort of person who wakes very quickly. If I’m lucky, the dream will have been weird but harmless, like the one where I woke going “right, I need to make that Stardew Valley mod, the one that gets implemented right after you join the coven!” despite having no desire to mod Stardew and Stardew having no coven. More often, though, it’s one of my nightmares, about hospital or having to get the cats somewhere safe or needing to move and not bring able to pack my stuff. All about, you may recognise, loss of control.
So I have bad dreams and wake up after about four hours, and I’m not sleepy but I’m still tired, and the last few weeks I’ve been dealing with this God awful malaise on top of it all. We have this running joke that I have Feels Bad Syndrome, or that my humours are unbalanced, or that I’m a Victorian lady with The Malaise, because so much of the time these days, when I’m not feeling well, it’s this non-specific weariness and general Not Rightness. It’s not my diabetes giving me low or high blood sugars; it’s not an adrenal crash; it’s not a POTS flare. Most of the time, those are under pretty good control. I just Don’t Feel Good.
And the frustrating thing is what can set off the emotional side of things. My GP, who is lovely and supportive, accidentally triggered a shame spiral by asking if I was considering working again. And yeah, I’ve thought about it. I miss working. I liked working. But if I tried to work right now, I would get sick. This last week, I’ve spent most of every day in bed, not sleeping so much as just too tired to get up. I still have brain fog pretty badly. My dietary balance is still so precarious that if I miss a single day of my supplements or don’t eat enough protein, it sends me into a physical tailspin (which is probably why I’ve had The Malaise this last week; I’ve been bad about keeping up my protein intake). I am not at a point where I can do anything but concentrate on getting well, and I know he didn’t mean anything by the question, but I still feel lazy and unproductive and like a bad patient. Never mind that I’m only eight months out from major surgery that drastically rearranged my digestive system, after two years of being so sick that I was shutting down; I have all these expectations of myself. I should be losing weight and recovering faster. Never mind that I’m the most complicated patient my team has ever seen and I’ve lost 90 kilos. Nothing is good enough.
My brain isn’t a fun place to live sometimes. It’s full of trauma and maladaptive responses and is very unhelpful. It’s also full of creative things and empathy and kindness, and those are nice, but it’s still a hard place to live when it feels like choices aren’t and the only work you can do is surviving.
But hey. I knitted myself a hat. That’s pretty rad.
The Medical Snowflake Diaries 