dust in the wind aiming for space

All the things I like and enjoy in barely contained chaos.

[miinobobeano]

It bothers me so much that the healthcare system relies so much on the patient's ability to advocate for themselves, organize their history, and be so persistent against every medical “professional” who says there’s nothing wrong/they can do. But so many struggle with fatigue, brain fog, and face such ingrained systemic barriers, that the people who need and deserve help and support can’t access it.

I saw something recently that resonated with me: “Access shouldn't depend on who has the energy to fight for it.” And I’ve never agreed with anything more.

[nozommo]

my main characters

theyre so important to me. also first five minutes soon im tweaking out

[lotrmusical]

alright folks. it’s time to find out which lotr poem you are. this quiz has 33 potential answers and only one of them is tom bombadil, so your odds are pretty good

[soracities]

when e.e. cummings said “i’ll live my life if it kills me”

[softspringsolace]

when andrea gibson said “i suppose i love this life, in spite of my clenched fist.” & when ellen bass said “to love life, to love it even when you have no stomach for it”

[typewriter-worries]

when james baldwin said, “this is why one must say yes to life and embrace it wherever it is found-and it is found in terrible places; nevertheless, there it is;”

[queerpontmercy]

when Mary Oliver said “it is a serious thing / just to be alive / on this fresh morning / in this broken world”

[legionofpotatoes]

The last time I seen my brother. The last time I seen the sun. Just for a few hours, we was free.

[marauders4evr]

Since July is Disability Pride Month

(as opposed to every other month when we're all demure about disability rights /gentle sarcasm)

I wanted to highlight one of my favorite artists: Liberal Jane.

[lovetekkers]

"YOU DESERVED IT"

"I KNOW"

OH MY FUCKING GOD

[marlovestrees]

Long COVID and ME/CFS folks, and disability allies:

I have something you can do in 15 minutes that will be very helpful to those of us with these disabilities!

The Canadian working group putting together recommendations for Post-COVID Condition (PCC) have released some bad recommendations regarding exercise as a treatment for Long COVID and cognitive behavioural therapy (CBT) to treat Post-Exertional Malaise (PEM).

The UK just recently managed to get these recommendations out of the NICE guidelines for ME/CFS, and we should try to prevent them from getting embedded in the Canadian ones for Long COVID.

They have a survey out until Nov. 27 at 11:45pm EST asking for public input. If you can manage it, please fill out the survey explaining why these are both bad recommendations. The survey is open to people internationally, and anyone interested in the topic. Please mark #2 and #8 as "Major Concerns" and provide a sentence or two explaining why (in your own words).

Draft Recommendation #2 - recommends exercise as a treatment for Long COVID, and only briefly mentions the existance of post-exertional malaise (PEM). Given how many people with long COVID meet the diagnostic criteria for ME/CFS, this is entirely backwards. PEM should be evaluated first and regularly thereafter and exercise should only be suggested once everyone is confident that PEM isn't present.

Draft Recommendation #8 - Recommends CBT as a treatment for PEM. This is recommending a psychological treatment for a physical issue, which is inappropriate. It also contributes to the long history of treating the fatigue in ME/CFS as self-inflicted. And is an activity that can also worsen or cause PEM.

The recommendations and links to their evidence charts are inside the survey itself, or you can open the PDF link on the first page and write your answers before copying them into the survey.

Survey:

https://www.research.net/r/CAN-PCCRecommendationCommentPublic

Here's a blog post explaining one person's responses to the survey:

https://thesciencebit.net/2024/11/21/my-submission-on-the-new-canadian-draft-recommendations-for-long-covid/

And here's one on the history of these "treatments" for ME/CFS and why they're based on bad science.

https://mecfsresearchreview.me/2021/01/12/the-expert-testimony-to-nice-that-took-apart-the-case-for-cbt-and-graded-exercise-for-me-cfs/

[marlovestrees]

If you see this before the November 27 end date, I'd really appreciate some help getting the word out.

@thebibliosphere @covidsafecosplay @myalgicencephalomyelitiscfstom @snorlax-and-co @covid-safer-hotties @spoonfulofhannah @theoverstimulated

[seliphra]

I love being queer, reblog if you too love being queer

[americiumam]

reblog w the song lyrics in your head NOW. either stuck in yr head or what yr listening to

[redrola]

[bloendram-deactivated20230905]

[jadedgenasi]

I've seen this before, but it's been years and it just came across my Twitter in its dying days. The words are from a favorite author of mine, Maggie Stiefvater, and they are the words I most need to hear when it comes to dealing with chronic pain and illness. I didn't need this the first time I saw it, six years ago. I need it now. Maybe you do, too.

[hamletthedane]

Want to learn something new in 2022??

Absolute beginner adult ballet series (fabulous beginning teacher)

40 piano lessons for beginners (some of the best explanations for piano I’ve ever seen)

Excellent basic crochet video series

Basic knitting (probably the best how to knit video out there)

Pre-Free Figure Skate Levels A-D guides and practice activities (each video builds up with exercises to the actual moves!)

How to draw character faces video (very funny, surprisingly instructive?)

Another drawing character faces video

Literally my favorite art pose hack

Tutorial of how to make a whole ass Stardew Valley esque farming game in Gamemaker Studios 2??

Introduction to flying small aircrafts

French/Dutch/Fishtail braiding

Playing the guitar for beginners (well paced and excellent instructor)

Playing the violin for beginners (really good practical tips mixed in)

Color theory in digital art (not of the children’s hospital variety)

Retake classes you hated but now there’s zero stakes:

Calculus 1 (full semester class)

Learn basic statistics (free textbook)

Introduction to college physics (free textbook)

Introduction to accounting (free textbook)

Learn a language:

Ancient Greek

Latin

Spanish

German

Japanese (grammar guide) (for dummies)

French

Russian (pretty good cyrillic guide!)

[hamletthedane]

Want to learn something new in 2023??

Cooking with flavor bootcamp (used what I learned in this a LOT this year)

Beekeeping 101

Learn Interior Design from the British Academy of Interior Design (free to audit course - just choose the free option when you register)

Video on learning to read music that actually helped me??

How to use and sew with a sewing machine

How to ride a bike (listen. some of us never learned, and that's okay.)

How to cornrow-braid hair (I have it on good authority that this video is a godsend for doing your baby niece's black hair)

Making mead at home (I actually did this last summer and it was SO good)

How to garden

Basics of snowboarding (proceed with caution)

How to draw for people who (think they) suck at art (I know this website looks like a 2003 monstrosity, but the tutorials are excellent)

Pixel art for beginners so you can make the next great indie game

Go (back) to school

Introduction to Astronomy (high school course - free textbook w/ practice problems)

Principals of Economics (high school course - free textbook w/ practice problems)

Introduction to philosophy (free college course)

Computer science basics (full-semester Harvard course free online)

Learn a language

Japanese for Dummies (link fix from 2022)

Ukrainian

Portuguese (Brazil)

American Sign Language (as somebody who works with Deaf people professionally, I also strongly advise you to read up on Deaf/HoH culture and history!)

Chinese (Simplified)

Quenya (LOTR fantasy elf language)

[eightsyllabledelay]

happy national holiday to those who celebrate

[theraddestcrow]

hey yo, just found this quiz that tells you how the audience would see you as a character

[bloodmoxley]

By @Erik_Whalen on Twitter