#me action

it’s hard to explain, but after living so much of my life with a disability, i have sort of stopped wishing for the life i had before. i was so young when i was able bodied that i can barely even recognize that was even me.

instead, i mourn this less disabled version of myself that i once planned for. when i first began thinking about my future as a wheelchair user, i pictured myself in an active manual chair, having a fully trained service dog, and working a low intensity job with accommodations.

recently i have been coming to terms with the fact that these plans i had for my life are just not achievable for me, at least not right now. and i am grieving the more functional, happier, and more palatably disabled person i could’ve been.

While you're here, here is also a link to both tweet and email President Biden to get him to DO SOMETHING about both the still-rampant spread of COVID and the still-rampant onslaught of long COVID, ME/CFS, and other postviral diseases in our country.

And then if you want and can do more, here is a link to the Home Activist Toolkit for #MillionsMissing #MEAction

And then here is a link to check your voter registration as well:

May is Myalgic Encephalomyelitis Awareness month. This week is part of the #MillionsMissing international awareness campaign.

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Isolating during this pandemic is not much different from how I lived before it. I was still able to get out sometimes for doctor appointments or the rare social gathering, but I had to spend most of each day in bed to make that possible. Even now, when I never leave the building, I still find myself needing to stay in bed all day. I mostly spend the time watching tv and movies I've already seen or reading stories I've already read because engaging with new content can be exhausting. 2 weeks ago I played several hours of video games while in bed, and I am still paying for that today with a crash. Most of what I eat needs to require no prep. I feel like I'm on the verge of getting sick (e.g. a cold) half the time, even though I'm not. An actual cold would leave me bedbound for days.

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File under: why I dissociate when a doctor tells me they don't "believe in" ME/CFS 😣

Not well today so I'm just gonna share this link with some cool stuff to commemorate Juneteenth, brought to us by the collective efforts of 6 Black museums.

On the page there's an embeded 80 minute video, which becomes available today at 12pm ET/9am PT here in the US. There's also shareable fact cards formatted for instagram, a printable Juneteenth flag for coloring, and a bunch of other info.

For fellow #pwME, ME Action Network made an instagram post sharing the same as above as well as info for BIPOC with ME and about the intersection of race and illness. The text of that post is as follows:

"In our ongoing effort to share resources by activists and movements that fight for racial justice, we would like to recognize the significance of today - Juneteenth.

Juneteenth, an annual holiday commemorating the end of slavery in the United States, has been celebrated by African-Americans since the late 1800s. This year it may resonate in a new way with many of us with the widespread protests across the US and the globe in pursuit of racial justice.

If you are looking for a virtual way to commemorate Juneteenth, six Black museums are joining forces to commemorate the 155th anniversary. Watch the video today at 9 am Pacific/ 12 pm Eastern.

If you are #BIPOC with ME (black, indigenous, person of color) or wish to be an ally to BIPOC/BAME in our community, you can join this Facebook group: https://www.facebook.com/groups/1291247507695050/

https://www.blkfreedom.org/ @blkfreedomdotorg

For the allies in our community that would like to take today to learn more about racism and ME, we offer resources on our site. Link in bio under Black Lives Matter article.