@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.

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 😔
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."

#Oregon #Washington #Aurora #NorthernLights #PNW #GiftArticle #GiftLink

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! 😻

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.

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

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

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

#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 ❤️

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

#MEcfs #LongCovid #CDC #MEAwareness #MEAwarenessDay

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.

#Aurora #NorthernLights #Photos #GiftArticle #GiftLink

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

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

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

Kaonarose, to random
@Kaonarose@disabled.social avatar

Positive news for the day: The doctor filled out forms for me to get an accessible parking permit! Fingers crossed that it gets approved. This would be so majorly helpful for me, particularly on high pain days! I don't drive, but sometimes, I get rides places and all the walking can make my pain worse.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@Kaonarose Crossing my fingers that this permit is approved! 🤞❤️

KydiaMusic, to animals
@KydiaMusic@mastodon.social avatar

YOU CAN’T HANDLE THE FLOOF!

Happy Thorsday

#AllCatsAreBeautiful #Thorsday #ThorToots #CatsOfMastodon #CatsOfFediverse #CatsOfActivityPub #FediCats #Catstodon #Cats #Cat #Caturday #RagdollCats

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@KydiaMusic Maybe not, but I want to try! 😻

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@KydiaMusic Oh no! 😔 Not fun for either of you!

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

This short video (about a minute) from asks people with ME/CFS, "How long did it take you go get diagnosed?"

(ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome)

https://www.youtube.com/watch?v=tnzz2QwwaMs

I'm "lucky" because it only took me 5 years to get a diagnosis vs. an average of over 8 years (from the 417 responses they got).

What's your answer? 🤔

1/2

@mecfs

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

You don't have to be an ME/CFS or Long Covid patient to help us improve medical education.

Join 's "Teach ME, Treat ME" campaign. Contact your doctor to tell them about the Mayo Clinic CME:

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

Learn more at https://millionsmissing.org

2/2

@mecfs
@longcovid

ahimsa_pdx, to mecfs
@ahimsa_pdx@disabled.social avatar

This amazing embroidered piece (by @lia_pas) is being showcased by Opera Mariposa for this year's "Benefit & Awareness Month"

From their website:

"Until June 1, 2024, you can enter to win art postcards and a book featuring Lia’s exquisite creations – all in support of the ME | FM Society of BC!"

(ME = Myalgic Encephalomyelitis, FM = Fibromyalgia)

https://operamariposa.com/art-showcase/lia-pas/she-breathed/

@mecfs

amymyoung, to random
@amymyoung@mastodon.online avatar

Today's word of the day in #Mikmaq

Gapjagwej (gap·cha·gwech)

Gapjagwej is a robin.

ahimsa_pdx,
@ahimsa_pdx@disabled.social avatar

@amymyoung

I hope I'm not being too picky (I love reading the word of the day) but isn't that a European robin in the photo?

https://www.birdsandblooms.com/birding/european-robin-vs-american-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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