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

ahimsa_pdx

@ahimsa_pdx@disabled.social

Vegetarian, book lover📚 Living with ME/CFS and Dysautonomia since 1990 ♿️ She/Her

Please use #AltText on images/GIFs❤️

Yes, I'd love to see a photo of your cat😻

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

💙 It's May 12th, International ME/CFS Awareness Day 💙

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

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! 😁

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, to mecfs
@ahimsa_pdx@disabled.social avatar

💙 It's May 12th, International ME/CFS Awareness Day 💙

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! ❤️

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" — 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 ❤️

wolfsbruder, to mecfs
@wolfsbruder@babka.social avatar

<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 😔
sending you some love ❤️

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 is great.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@Jane I love this photo! 😻

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 😢

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.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

Screenshot of the video summary. See the image if you can't read the text.

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 ❤️

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/

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

CDC post for ME/CFS International Awareness Day, May 12th:

https://www.cdc.gov/me-cfs/resources/awarenessday.html

"From May 6 to 12, CDC will light the Atlanta Visitor Center in blue to recognize ME/CFS International Awareness Day. We are honored to have people with ME/CFS and their caregivers join us to kick off this event."

ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome

About half of Long Covid patients meet ME/CFS diagnostic criteria

@mecfs @longcovid

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

"Most extreme solar storm in 20 years brings beautiful northern lights"

"The major disturbance of Earth’s magnetosphere caused stunning aurora displays across northern Europe and very low latitudes in the U.S."

https://wapo.st/3yhyUyk

Edit: Oops, I was wrong this is behind paywall!

The link has been changed to a gift link. Click on link above ⬆️ not the preview below.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@darwinwoodka Thanks for letting me know! 😊

I didn't see the usual way to get a gift link for this article - I will try again…

Okay, I think what happened was I mixed up how to get gift links on different news sources. I've now edited the post to add a gift ink! 😀

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@darwinwoodka Easy for you 😉

My poor brain is easily confused ... but thanks for the additional link!

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 description

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

ahimsa_pdx, to oregon
@ahimsa_pdx@disabled.social avatar

From OPB:

"Advocates for homeless seek lasting solutions even as Supreme Court weighs Grants Pass case"

https://www.opb.org/article/2024/05/09/seeking-lasting-homelessness-solutions-supreme-court-grants-pass-case/

"The Supreme Court’s decision in the case out of southern Oregon, expected in June, will broadly impact how local governments write homelessness policy in the United States."

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

I've joined the "Teach ME, Treat ME" campaign from #MEAction

We're asking for ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) to be taught in medical schools and via continuing education (CME)

⭐️ And you can help! ⭐️

Please share this CME with your healthcare providers:

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

Need help crafting an email? Here's a template:

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

Thanks ❤️

@mecfs

#MEcfs #PwME #MedEd #LongCovid #TeachMETreatME #MillionsMissing

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

May 3rd presentation by Todd Davenport (about 1 1/2 hours) on MECFS & Long Covid:

"Post-Exertional Neuroimmune Exhaustion as a Bioenergetic Condition"

https://www.youtube.com/watch?v=vuoVAP1CC1Y&t=720s

(link skips part of intro)

I've not been able to watch this myself yet but wanted to pass it on.

@mecfs
@longcovid

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

I've attached a screenshot showing the session outline for this talk.

@mecfs @longcovid

amymyoung, to random
@amymyoung@mastodon.online avatar

Today's word of the day in

Gapjagwej (gap·cha·gwech)

Gapjagwej is a robin.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@amymyoung No big deal, I'll bet few others even noticed it!

I like bird watching so that's why I noticed.

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