Brianne Benness Profile picture
Feb 2 11 tweets 2 min read
my biggest pacing strategy* is to devote yourself to finding the absolute lowest energy way to do any task you’d like to do regularly, and then to do the task that way every single time instead of wasting precious energy trying to decide how much to accommodate yourself each day.
*with full recognition that:
- sometimes fatigue is so intense that no tasks are possible to do safely, and
- a lot of survival needs can interfere with the basic principles of pacing.

pacing is aspirational & frustrating but also helpful for a lot of people w/o other options.
(also this isn’t like, a proprietary strategy? I’m sure many other people have talked about it? I’ve just been trying to explain pacing a lot lately and that’s how I’ve ended up explaining it?)
and also honestly write out the steps for yourself if that helps!

it’s easy to forget how you solved a problem last time and get into the weeds about that. (also yes I know fatigue can also make it impossible to create or document a decision tree.)
for ex!

we use a decision tree to run the void RT account. majority of posts fall into a few identifiable categories (ie. venting, requesting advice/support, jokes/memes about sick life) so there’s a document full of “if x, do y” to reduce cognitive load of cumulative decisions.
this process has taken me a long time, I think mostly because so much content related to task optimization is still written with the basic assumption that you’re optimizing in order to *do more tasks* which is the opposite of my motivation.
and also a lot of task optimization culture is also extraction capitalism culture, and the “optimization” occurs via extractive labor practices. so, that’s something to pay very close attention to.
anyway it’s not a failure of character to want to do things The Easy Way. decision fatigue can be a high leverage intervention point.
anyway, pacing: 👍🏻
but yes upon further reflection, this advice is basically: examine the ways that you can develop user manuals for your own life, to optimize things you like enough that there is surplus energy available that you can keep for yourself to spend on rest or A Fun Thing or whatever.
I do think it’s depressing how much of an analog this is to telling people experiencing poverty to budget better, but that’s on the hands of the medical establishment and not people sharing hyper-specific tips about how to keep our bodies on a little more of an even keel.

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More from @bennessb

Feb 3
weird how doctors who will condemn and relinquish care for “non-compliant” patients suddenly have compassion about how constant 100% compliance can be exhausting and borderline impossible now that they’re talking about abled compliance w guidelines to protect disabled people.
it’s almost like the only consistent position between these two takes is that you don’t think disabled people deserve compassion, safety, or humanity?
have we tried chiding healthy people that they just aren’t trying hard enough to end the pandemic? because, you know?
Read 4 tweets
Feb 3
I just really truly cannot wrap my mind around this strategy of letting [everyone who imagines themselves to be low risk] get covid over and over until everybody left is high risk for covid complications *because* of their previous covid complications?
it’s been two years! there is absolutely no reason to think that we can indefinitely ignore long covid without any consequences!

(tho history gives us plenty of reason to expect people to keep ignoring it, the consequences are still happening in plain sight.)
like honestly saying “covid can’t get me if I get covid first!” is not a public health strategy.
Read 4 tweets
Feb 2
are there any non-corporate/non-gig economy options in your region for people who want to participate in the local economy from home? (not necessarily internet-based)

I know there are plenty of places *not* doing this but I’m also wondering what good examples might be out there.
some things that we’ve seen or tried in our area include:
- single farm summer csa with delivery done directly by farm
- winter csa with products from a variety of local farms/sources, also with delivery by farm
- monthly hard cider tasting club from regional cider, ups maybe?
there’s a restaurant in the next town over doing a prix fixe takeout menu with multiple courses and wine all packed for pickup on Valentine’s Day, which is still pretty dang cute although probably $$
Read 5 tweets
Feb 1
in convo with @DownsideUpKat about low-spoon ways to deescalate & acknowledge the kind of twitter conflict that clearly looks like 2 [foggy] brains disagreeing past each other*.

it’s my bedtime so my best idea is “looks like we’ve been sucked into an Inverted Alanis Situation” Quotefancy graphic of an Al...
*you know, like when person b commiserates/agrees with a post from person a, and person a interprets a very different tone (often completely understandably, with all the context cues that twitter can strip) and responds with Much Hostility
anyway I really invite everyone to share better ideas! (or worse ideas, for lolz!)
Read 7 tweets
Jan 31
my honest twitter bio would say like: come for the affirming tweets about systemic disbelief of people with chronic illness, stay for the perplexing tweets about corporal haunting with extremely inconsistent world building.
I’ve barely tweeted about my spine worm in months, is that disrespectful?
revered spine worm, your recent integrity has not gone unnoticed and I offer you my deepest gratitude for the expanded orthostatic tolerance this has been bestowed upon me.
Read 4 tweets
Jan 31
just reminded by another convo going on that maybe one reason people w EDS might be Reacting Strongly to patterns of [advocates with institutional power blocking indiscriminately over clarifying questions] is because we have seen how this played out with L*ra Bl*om.
like if you don’t want people to be mad at you for excluding them from your advocacy work after you’ve intentionally built a professional brand around representing those people, consider not self-identifying as a representative to begin with?
Read 7 tweets

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