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Brianne Benness Profile picture
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18 Feb, 4 tweets, 1 min read
I am so incredibly angry that it never occurred to me to think this way until I didn't have a choice about it.
The shit we get told for needing a lot of sick days is inexcusable.
I always thought the point of taking sick days was to avoid needing sick days in the future. which is a very specific kind of chronic illness logic, and I don't know how widespread it is.
(I now think the point of Taking Sick Days is to maintain equilibrium, precarious and aspirational as that may sound)

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Brianne Benness Profile picture
28 Nov 20
Really interesting how many people interpreted this as mindfulness bashing.

This was about how I (and many other people) literally do not have the tools to interpret the signals our bodies are sending us until we've done years of research.

See also, my tweet about cipher keys.
[med trauma]

For most of my life, other people *insisted* that my symptoms must have a pattern if I just paid closer attention.

Most people acted as if there was an effort & attention gap rather than a knowledge gap.

This often took the form of literal gaslighting.
The tool I needed to "tune into my body" in my case was a 24/7 heart rate monitor. Nobody suggested that.

I didn't know that was data that could help me and the tools didn't exist for consumers yet anyway.
Read 5 tweets
Brianne Benness Profile picture
28 Nov 20
If you have suspected or confirmed mast cell problems, what have been the most unexpected early warning signs that it's Time To Take A Benadryl*?

*or other rescue med, etc
I have flushing episodes that are pretty standard, but I definitely also have SUDDEN COGNITIVE & FULL BODY EXHAUSTION (affectionately known as bee brain because my brain uh, feels full of bees) that I am always thrown off by.

"Why do I suddenly need a nap?! Oh. Need benadryl."
One of the strangest discoveries of this crash is that bee brain is not inherently part of my fatigue.

When I unwittingly lived in toxic mold in 2017, I thought that feeling was just part of being exhausted?

I've still had cog fatigue this year, but it's much less... something.
Read 5 tweets
Brianne Benness Profile picture
27 Nov 20
Doing this as a poll for the option of anonymity, but do any/many of you read through #NEISVoid tweets directly (not through my RTs)?

Just curious.

("When I ask" refers to me, Brianne asking, in case that's verbally confusing)
I know these categories are subjective but time itself is constructed and there's nothing we can do about it.
It's almost my bedtime and I have no idea how this poll will be split when I wake up! (Hopefully later than 5am.)
Read 5 tweets
Brianne Benness Profile picture
26 Nov 20
Hey friends! Do you want watch some very bad Christmas films on Teleparty with me today?

I'm watching Christmas Inheritance on Netflix around noon Boston time and then Happiest Season on Hulu (important change!) around 4pm Boston time. I'll put up the links ~30 mins in advance.
Okay hi!

If you want to watch (& perhaps snark on) the Netflix Holiday Original called Christmas Inheritance with me, here's the link! Will be starting in about half an hour & taking many breaks.

ps. I'm a bad-sleep zombie today, be warned.

tele.pe/netflix/d031ff…
oh! and don't forget that you have to click the red TP icon in the toolbar after clicking in the link in order to actually join the party. I forgot to put that in the last tweet (but it's in the info thread!).
Read 4 tweets
Brianne Benness Profile picture
26 Nov 20
well the [sarcastically good] news is that I got terrible sleep before a scheduled holiday zoom call later this morning, which is literally how I became bedbound for months back in April!
I have not gotten better at managing all the Complicated Feelings that come with having a body that regularly says "you can participate in [this planned activity], but there will be unpredictable consequences and they may be permanent!"
And I always feel so preemptively defensive about the IDEA of backing out of a plan with non-sick folks that my brain gremlins always tell me anyone else involved will think I'm A DRAMATIC FAKER.
Read 5 tweets
Brianne Benness Profile picture
25 Nov 20
Ok honestly I feel like the thing that healthy people don't get about diagnosis is how much it feels like getting the key to a cipher.
Like you spend [months/years/a lifetime] alternately tuning into and out of your body with much concerted effort, but every time you tune in it's just chaos.

Nothing makes sense and everything feels terrible. And those feelings compound each other.
And if you get misdiagnosed (which happens a lot), you're left with this unease like... why hasn't the chaos become a bit more orderly?
Read 7 tweets

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