@ahimsa_pdx@disabled.social
@ahimsa_pdx@disabled.social avatar

ahimsa_pdx

@ahimsa_pdx@disabled.social

Vegetarian, book lover๐Ÿ“š Living with ME/CFS and Dysautonomia since 1990 โ™ฟ๏ธ She/Her

Please use #AltText on images/GIFsโค๏ธ

Yes, I'd love to see a photo of your cat๐Ÿ˜ป

Avatar photo: Old photo of my cat, tabby with white chest & paws. Banner photo: Trees in a park with green leaves.

Just my posts, no boosts = https://justmytoots.com/@ahimsa_pdx?public_only=true

#MEcfs #PwME #Dysautonomia #POTS #LongCovid #Disability #Accessibility

This profile is from a federated server and may be incomplete. Browse more on the original instance.

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From David Tuller:

"Anil van der Zeeโ€™s New Video on Living with Severe ME"

https://virology.ws/2024/05/14/trial-by-error-anil-van-der-zees-new-video-on-living-with-severe-me/

"Anil was a dancer before he got sick. Now he makes art through his images and words. I am constantly amazed at how active and engaged he manages to be with his phone as his instrument. Here is The Prison of M.E., a haunting video he posted for World ME Awareness Day on Sunday, May 12th (two days ago), about life as a severe patient."

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Anil van der Zee's blog:

https://anilvanderzee.com/blog/

and his account on Bluesky:

https://bsky.app/profile/anilvanderzee.bsky.social

@mecfs

ahimsa_pdx, (edited ) to Dogs
@ahimsa_pdx@disabled.social avatar

"Westminster dog show has its first mixed-breed agility winner, and her name is Nimble" ๐Ÿ˜

Gift link
https://wapo.st/4bvhb4U

"A mixed-breed dog has won the Westminster Kennel Club dog showโ€™s agility prize for the first timeโ€ฆ

Just about a foot (30.5 cm) tall, Nimble powered through an obstacle course of jumps, tunnels, ramps and other features like a furry, black-and-white, well-targeted torpedo to cheers from the crowd in the agility finals."

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

From Yale Medicine:

"Long COVID, ME/CFS and the Importance of Studying Infection-Associated Illnesses"

https://www.yalemedicine.org/news/long-covid-mecfs-and-the-importance-of-studying-infection-associated-illnesses

"Research on Long COVID may also shine light on the underlying causes of myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS."

@mecfs @longcovid

moss, to random
@moss@wandering.shop avatar

MY PARTNER GOT ME THE BISEXUAL SPACE OREOS!!! OH HAPPY GAY!!!!!!!!

cw selfie, eye contact, food

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@moss You look so happy! ๐Ÿ˜

I can't remember the last time I ate Oreos, but I did buy a box of Red Plate Whoopie Cookies last week ๐Ÿ˜‹

(note - I found this photo online, my box of cookies is long gone!)

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@moss I like their ginger cookies a lot, but they can be hard to find in stores:

https://redplatefoods.com/products/ginger-cookies-2-boxes-16-cookies

(link goes to the wholesale site, just the first link I found)

anne_twain, to HashtagGames
@anne_twain@theblower.au avatar

#MakeASongOrPoemRidiculous

"She's cli-i-mbing a stai-ai-aircase to Kevin."

#hashtagGames

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@anne_twain So silly! It made me smile ๐Ÿ˜

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Here's the latest News in Brief from the Science for ME forum for week starting May 6:

https://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-531761

The news summary includes articles, videos, research, advocacy, coming events, and more.

Note: A transcript from the CDC's May 6th ME/CFS webinar is now available:

https://www.cdc.gov/me-cfs/pdfs/23-sec-cdc-program-update-5-3-24.pdf

@mecfs @longcovid

#MEcfs #LongCovid #ChronicIllness #MyalgicEncephalomyelitis #Science4ME

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

How ME/CFS shrinks your world, bit by bit

art by Kornelia Paulsen

@mecfs

#MEcfs #PwME #MyalgicEncephalomyelitis #MillionsMissing #WorldMEDay #MEAwarenessDay

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

๐Ÿ’™ It's May 12th, International ME/CFS Awareness Day ๐Ÿ’™

I'm one of the millions around the world who has ME/CFS.

I'm 63 years old and I've been dealing with ME/CFS for over 34 years, since January 1990.

(attached photo is from last year)

1/n

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

In past years I've shared stories of my formerly active life.

I'm skipping that this year because some folks interpreted my story in an ableist way. They thought I meant:

"See how active and productive I was? We need treatments so we can be productive again!"

No, I only shared my story to push back on false narratives that being fit and healthy protects you from disabling chronic illness.

Anyone can get ME/CFS or Long Covid!

https://www.meaction.net/learn/what-is-me/

2/n

@mecfs

#COVID #MEcfs #LongCovid

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Back to ME/CFS, for a few years has used the phrase "Millions Missing" which has at least 3 meanings:

  • Millions of patients are missing from their lives - work, school, exercise, socializing

  • Millions of dollars are missing from ME/CFS research

  • Millions of doctors are missing ME/CFS education - often not taught in med schools

Here's a pillowcase I made for last year's demonstration and the caption I wrote.

3/n

@mecfs

I've been sick so long, since January 1990, that I don't even recognize my former self. I've lost the ability to do so many things. I feel like a caged butterfly beating its wings against the bars. Marjorie

ahimsa_pdx, (edited )
@ahimsa_pdx@disabled.social avatar

This year is focusing on educating medical professionals with a "Teach ME, Treat ME" campaign.

And you can help! ๐Ÿ˜

Just share this link to the Mayo ME/CFS CME (Continuing Medical Education) with your doctor:

https://millionsmissing.meaction.net/treatme/

You can also print the document (8 pages) to bring to your next appointment. I've given it to several doctors - and so has my husband, who does not have ME/CFS!

4/n

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Sharing information about the Mayo ME/CFS document (Diagnosis and Management of ME/CFS) - and the associated CME (Continuing Medical Education) - is a great way to immediately improve patient care for people with ME/CFS.

Remember, roughly half of Long Covid patients meet the ME/CFS diagnostic criteria.

Need help crafting an email to send to your doctor? Here's a template:

https://docs.google.com/document/d/15jJZ3-eHQq0pVsshfK-E0so2ucvrBWAzK8en82Xfnfo/edit

5/n

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

If you've read this far, thanks so much for listening! โค๏ธ

And if you have the ability (only if you are not struggling yourself!) then you can make a donation to here:

https://www.meaction.net/millionsmissing-fundraiser-2024/

6/6

@mecfs

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

๐Ÿ’™ It's May 12th, International ME/CFS Awareness Day ๐Ÿ’™

I'm one of the millions around the world who has ME/CFS.

I'm 63 years old and I've been dealing with ME/CFS for over 34 years, since January 1990.

1/n

@mecfs

ahimsa_pdx, (edited ) to mecfs
@ahimsa_pdx@disabled.social avatar

Today is International ME/CFS Awareness Day!

I'm going to try to post a few things on this topic, and I will definitely be boosting a whole lot of posts from other folks!

Just a warning for anyone who might be overwhelmed by my higher than usual level of posting.

Feel free to mute me for the day (love that Mastodon feature!), or filter out related hashtags, or even unfollow - whatever works for you! โค๏ธ

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

Personal story from @ehashman for International ME/CFS Awareness Day:

https://hashman.ca/me-cfs/

Quote:

"One of my acquaintances cried when they last saw me in person. But frankly, I love my wheelchair.

I am not "wheelchair-bound" โ€” I am bed-bound, and the wheelchair gets me out of bed. My chair hasn't taken anything from me."

Also included: a list of ME/CFS advocacy groups and what you can do to help โค๏ธ

#MEcfs #MEAwarenessDay #WorldMEDay #MyalgicEncephalomyelitis #Disability #Wheelchair

wolfsbruder, to mecfs
@wolfsbruder@babka.social avatar

#mecfs #fibromyalgia #CFS #PEM #POTS

<rant>

So I need to make more space and lose more of my own living space to move the AC so that the temp differential doesn't kill the TV that I can not afford to replace.

I needed to get spoons to get up and do this, as I am bed-bound.

My 11 yro is angry that I am not doing what he wants, and would not let me do what I needed to get spoons, he stole my spons.

And now he is livid at me, because I have less spoons than I started the day with, I can't do now, hell I can't even eat now.

And he is screaming at me blaming me for not doing what needed to be done so he could get what he wanted in the first place.

I am so exhausted and overheating with my meds; if I overheat, bad things happen.

And he just doesn't get it.

As far as he is concerned, it's all my fault that his day and plans, which he never shared, to begin with, are ruined.

</rant>

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@wolfsbruder ]sorry this happened, it sounds so exhausting ๐Ÿ˜”
sending you some love โค๏ธ

ahimsa_pdx, to oregon
@ahimsa_pdx@disabled.social avatar

From The Oregonian:

"See photos of northern lights in Oregon, Washington"

Gift link =
https://www.oregonlive.com/weather/2024/05/northern-lights-put-on-a-show-above-oregon-washington.html?gift=92bf6503-b181-459a-b0d1-e2898255d43b

"The northern lights, or aurora borealis, put on a colorful show across the Pacific Northwest late Friday night into early Saturday morning. And there could be a repeat performance Saturday night."

Jane, to random
@Jane@toot.wales avatar

Even the cat thinks #NcutiGatwa is great. #Caturday #DrWho

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@Jane I love this photo! ๐Ÿ˜ป

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

As we approach May 12, ME/CFS International Awareness Day, it's important to remember those with severe ME.

Many of them are so sick that they are on social media either very rarely or not at all ๐Ÿ˜ข

This video from Anil van der Zee, The Prison of ME, explains the agony of severe ME:

https://www.youtube.com/watch?v=yLRateIQdzc

About 12 minutes. Subtitles in multiple languages.

#SevereME #MEcfs #PwME #MyalgicEncephalomyelitis #ChronicIllness #MillionsMissing

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Here's a link to the short thread that Anil posted on Bluesky:

https://bsky.app/profile/anilvanderzee.bsky.social/post/3ks7nbq76ds2d

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

I forgot to tag @mecfs - Oops!

I think editing in a group tag does not work (post is not boosted).

So here's that video link again:

https://www.youtube.com/watch?v=yLRateIQdzc

Please read the rest of the thread for more info - thanks โค๏ธ

ahimsa_pdx, (edited )
@ahimsa_pdx@disabled.social avatar

I realized that once again I completely forgot to spell out the abbreviations ME and ME/CFS.

So, for folks who have never heard of this illness, or who may mistakenly know it as "chronic fatigue" (which is a symptom of many illnesses and is not the same as an ME or ME/CFS diagnosis), here's a link from the website:

"What is ME?"

https://www.meaction.net/learn/what-is-me/

MissingThePt, to random
@MissingThePt@mastodon.social avatar

Beautiful

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@MissingThePt Good one!

But you need to add "Colorado" to your #AltText description

I've been to at least two other Auroras (Oregon and Illinois) and I'm sure there are even more out there!

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