ok this story is embarrassing but it is my most concise explanation for the kind of exhaustion some chronically ill people are dealing with

that is just completely ineffable if you have not experienced it like I have dealt with an energy limiting chronic illness for about two decades at this point

but there is a big difference between "whoops I overdid it and I have to pay the piper"

vs "whoops I overdid it and now my symptom baseline is dramatically worse, possibly permanently"

I keep thinking about post viral illness, metabolism and "sickness behavior"

Where basically the idea is that your body slows your metabolism and adjusts your behavior to basically force you to rest during illness

(This is an oversimplification, I'm sorry, character limit) The thing I keep coming back to is hibernation, or more specifically this thing called "torpor"

Torpor is kind of like a mini hibernation where animals reduce their metabolic rate and core body temperature to save energy under harsh conditions

Hummingbirds do it at night!

if you've been following me for awhile, you probably saw a bunch of chaotic muppet-flailing threads I wrote about the gut microbiome

I finally managed to cobble together enough executive functions to write a blog post overview (see next tweet)

#NEISvoid anyway, I think the whole "microbes use histamine to communicate with our mast cells" thing is my favorite part

(and raises very intriguing questions about MCAS and the microbiome)

#NEISvoid

liminalnest.wordpress.com/2023/08/02/gut…

doctors: don't use doctor google

also doctors: frequently don't inform you of medication side effects, post-operative instructions, and basic lifestyle changes that might improve your symptoms (other than "diet and exercise") the replies to this thread about not receiving post operative instructions til after the procedure, frequently when still groggy from anesthesia are...gosh

I wish so many people hadn't had this experience

https://twitter.com/UntoNuggan/status/1669141264468520962?t=IKdQ8XDiaTNb2oYi-4TpEQ&s=19

why is it that whenever you're getting elective surgery, there's not like. A printout of post op instructions and a supply list handed to you when you schedule the surgery.

Like do you want me to go buy pudding cups and broth on the way back from the hospital or- thinking about the time I had abdominal surgery and they told me the week before that I needed some kind of dress or no-waistband item of clothing to wear home from the hospital

I literally had to go to a mall (??) and try on clothes in severe pain that I needed surgery for

I've been thinking about this a lot wrt some of the research I've been reading about neuroinflammation

and wondering about if this is why stimming is so necessary for me to even kind of function

https://twitter.com/sensorystories_/status/1667543974448357376

Here's the study for the statistic referenced in the tweet above

https://twitter.com/sensorystories_/status/1667543989224890368?t=XTW9q7uAuGuGp1YVDFZZRw&s=19

chronic illness hygiene hack:

I finally decided to try getting a hairbrush made from natural materials because of all the hype about distributing the oils throughout your hair

"too tired to shower" periods are INDEED much less...greasy

#NEISvoid there's a lot of boar bristle brush guides out there, but I was hoping for something with a different texture because bristly is a sensory nope for me

I found this list very helpful in finding a brush (but slightly spendy fyi)

sustainablejungle.com/sustainable-be…

some tips for getting wildfire smoke and other airborne gunk out of your clothes

from someone with ridiculous allergies to fragrances etc

🧵 Note: these tips might not be accessible/relevant to everyone's individual situation, feel free to cherry pick what works for you

[psych survivor trauma]

once I went to the hospital for a mental health crisis, and I managed to piss off the ER nurse

they placed me in the unit dedicated to schizophrenia, and they 100% intended it as some kind of punishment

the most dangerous person there was the doctor [psych survivor trauma, un-aliving, "faking"]

the doctor accused me of "faking" my desire to unalive myself "for attention"

he wanted to discharge me after basically making my mental health crisis a thousand times worse

the only reason he didn't is because of my family

Bigotry is not a mental illness, but people in power will use that prejudice to further marginalize ND + mad people, and deny us needed social services like safe and affordable housing

Every time you call a bigot some word that means "mentally unwell," you're helping them do it Blaming violence and bigotry on mental illness is convenient

Because the "solution" is more jails/institutionalization and maybe fund a special unit in the police department

It also diverts attention away from all the ways government continues to enact white supremacy

[ableism, NYC murder]

calling it now. If the criticism of the subway killer gains too much traction and public opinion shifts, they're going to shift the narrative to say that he was having some kind of veteran PTSD murder attack because he was so scared by the hungry Black man [ableism, NYC murder]

this might seem contradictory because their whole justification for why the murder was just fine, actually, is because a hungry person yelled about being hungry

but we all know white supremacy is made of double standards and hypocrisy

Therapy update:

I think I figured out the specific therapeutic technique that keeps making everything terrible for me, and for once it is not CBT! (haha, yes, the acronym)

It is, in fact, described as Definitely Not CBT but I'm not finding it much better How ACT was described to me:

it's about accepting that there's a lot of terrible stuff, and figuring out what steps you can take with the resources you have

some of my family members are planning to fly with an Expensive Medical Device for the first time

they are absolutely shocked at how hard it is to get a clear answer about whether they can stow it onboard, or what happens if it gets damaged

the shock is exhausting to witness they're trying to find an airline that will guarantee that they can stow it onboard

*deep sigh*

[food]

I've been doing some more research on "why does my body sometimes just start violently rejecting basically every food" and my mystery hypoglycemia

And I wanted to share some of what I'm learning about inflammation (eg from MCAS), the autonomic nervous system, and enzymes As ever, I will probably need to take intermittent rest breaks while writing this thread

once upon a time when I had more energy, I had this nifty zine style directory of where to find fair trade, indie, less ecologically terrible products

it's been like...three years since I could go to a thrift store, and I need to replace some things

does a zine like this exist? my favorite part, honestly, was that I didn't have to track down like...an individual blog post on where to find clothes or housewares or whatever

It was just like a little phone book, and I could look up a category and read a short description of each business listed

Incoming 🧵 about self care I've used for my IIH that seems to help improve my glymphatic system drainage, brain fog, and headaches

Potentially relevant for others with neuroinflammatory conditions such as ME Background info on new research on the anatomy of the glymphatic system (aka the brain's janitorial service) and potential implications for many chronic illnesses

https://twitter.com/UntoNuggan/status/1643026290566365185?t=b-S-tE1bH75XkLW8RPvZpA&s=19

[psych survivor feelings]

just thinking about how one of my first experiences with hospital psych workers was being told to pick a word to describe my feelings, taking an (undiagnosed) Autistically long time to do that, and then being told the word I picked wasn't a feeling [psych survivor feelings]

then they handed me one of those "feeling charts" and made me pick a word from the chart, but also got frustrated I was taking so long trying to process

and we had to repeat this process twice a day

in a continuation of my microbiome research on myself, I am trying a probiotic... for my sinus microbiome

I'll post more details when I have more than a few days of data, but so far? I have been able to stop using my nasal sprays, and my sinuses remain unclogged 🤞

#NEISvoid For contrast: typically when I miss a single Neti pot use or twice daily nasal spray

I get visible bruising along the sides of my nose, instant headache, and it takes like three days until I can breathe through my nose

does anyone have any research papers about what mast cells are *supposed* to do in the digestive tract?

seeing a lot of papers about dysfunction, but honestly I always find it easier to troubleshoot when I understand how something works in like, a Platonic ideal

#NEISvoid
#MCAS Paging

@Really_Richelle
@ahandvanish
@alexhaagaard
@8Eevert

For possible help finding info on this (see above tweet)

This is still a work in progress and probably needs some fine tuning

but here's a graphic version of some of my ideas about how post viral illnesses happen

#NEISvoid Here's some information about the glymphatic system angle, aka the part of the brain responsible for clearing out waste

https://twitter.com/UntoNuggan/status/1643026290566365185?t=2cYlwbaYFVddhd67fQ8Q-Q&s=19

I have been down a research rabbit hole for the past couple days, and now I'm coming up for air and sharing with Twitter

Today's topic: new research on the glymphatic system, and potential implications for Dysautonomia (and like... honestly every neurological issue)

#NEISvoid First off, what the heck is the glymphatic system?

Well it's basically how our bodies clean gunk out of the brain

Including the leftover products from making/using energy, as well as immune waste