An Open Letter To My New Primary Care Physician
This is just to followup a bit on Monday’s appointment, a common thing I need to do because the sensory, social, and anxiety pressures of a realtime conversation in a small room isn’t a dance my autistic brain is especially adept at due to all the balls you need to keep in the air at all times. Task switching (because multitasking is a lie) is a drain.
That said, a followup message this insanely long is seriously atypical, but necessitated by the introductory circumstances. Also, responding via public blog post also is not the norm, although I do tend to post about my health-related journeys. Since I’d have blogged about all of this anyway, rather than duplicate the effort I’m just posting this as-is, mostly as it originally appeared as a draft in Apple Notes.
(The limitation here is that Kaiser messages are not very long, but this is the only means I have to adequately or accurately express myself. Not in your power, but Kaiser really needs to consider messaging as a disability accommodation and raise or eliminate the character limit.)
First, the nutrition thing, whether or not it’s related to the fatigue, is a fair cop and a not uncommon issue for autistics. I’ve already made adjustments to all my meal points during the day, although it will take some time for me to figure out if it fits within my SNAP budget and none of my sensory issues with food come into play. I’m not sure yet if I’m at the usual recommended daily allowance, but what I’ve put together to start with is set up not to deplete my spoons.
(I never know who knows spoon theory and who doesn’t, but even if you do also check out ticket theory by Hilary Knutson if you don’t know that one. All of this comes into play when it comes to the health, wellbeing, and capacities of an autistic person.)
Second—and I’ll also get into this with my therapist a bit this week probably—I’m having lingering cognitive trouble with the “strength training” thing because it feels like we’ve landed back on “deconditioning”, something my experience of the last ten years seems to dispute (as does current, modern understanding of various actual fatigue conditions, not that we know whether or not I have one), and also because it’s reading to me like “you’re just not applying yourself enough”, which is a thing in other contexts that autistics incorrectly and improperly get told a lot, and so requires a lot of processing and deconstruction. Not to mention that it pokes pretty hard at my pre-autism diagnosis life of simply feeling like an obvious failure and fuckup.
Part of the snag, although not all of it, is that having in the past had exertion trigger Bad Times (while also having periods where atypical exertion was possible, if only with keeping things very low impact both before and after the attempt), I’m understandably (to my mind anyway) anxious if not outright scared about the idea of attempting increased activity on a regular basis. Which is not to say I’m dead set against the try, but to say that it’s an enormous hurdle, if only because I don’t sufficiently or clearly understand what the risks are, except for remembering past moments when increased exertion led to Bad Times.
Further, it’s hard for me not to feel like the exercise recommendation also slams up against my at this point very carefully balanced and sort of finely tuned autistic resource management, wherein the goal isn’t just to have enough spoons to get through any given day but ideally to conserve some of them in case something new or unexpected happens. This is sort of a non-negotiable physiological and psychological part of surviving as an autistic person and it’s not (yet?) clear to me just how to incorporate even minor and relatively low-key exercise like wall planks and pushups in a way that doesn’t leave me without the spoons to make dinner or take a shower—the whole shave, haircut, and shower process already being something that I can only pull off like once every two weeks, filling in with bathing at the sink otherwise.
I don’t, essentially, know what to watch out for in terms of signs that it’s all just going awry and hurting me rather than helping me, and I need to understand what that would look like ahead of time. There’s a whole component of autistic scripting that for some of us includes needing to catastrophize because anticipating possible bad outcomes in advance is less of a system burden than needing to scramble to compensate for or address them in real time while they are happening.
Looking at the after visit summary treatment plan, the reality is that even at the height of my daily walks, I was averaging like 5,000 steps a day at most. Striving for 10,000 just seems wildly out of the realm of possibility. “Exercise daily: get sweaty/out of breath” is literally the thing I have not been able to do since my daily walks fell apart last February, and when the walks were going strong was a thing that only happened on those occasions where I could push to the pace of a 16-minute mile, so I’m sort of fully at a loss to understand and process this recommendation.
At any rate, understanding that all autistic people are different, welcome to being the primary care physician for this autistic person. Anything in the way of clarity, clarification, or further context from your end will be appreciated as I try to navigate both the anxieties and the complexities of—well, all of the above.