tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
janetlogan, to LGBT
@janetlogan@mas.to avatar

Pride 2024

"I attended the local Pride celebration on Saturday, 1-June-2024. It was my first Pride since 2012, back in Houston." (continued at link)

https://janetannelogan.wordpress.com/2024/06/04/pride-2024/

#Fibro #Fibromyalgia #spoonie #LGBT #LGBTCommunity #Pride2024 #Trans #TransJoy #Transgender

@spoonies

lia_pas, to mecfs
@lia_pas@vis.social avatar

Catch the premiere of Opera Mariposa’s last online musical performance for and ! Join me NOW for a beautiful piano improvisation, and mark the close of an incredible May Awareness Month for , and other chronic neuro-immune diseases. https://www.youtube.com/watch?v=47ADrkevWNQ

tomkindlon, to bluesky
@tomkindlon@disabled.social avatar

In case of interest, I’ve recently passed 1000 followers on:

This is from posting pretty much solely on #MECFS , #LongCovid and related conditions and to a lesser extent chronic illness in general, which shows it is possible to build up followings on them, in case people either gave up on them or never tried.

@longcovid @mecfs

KitMuse,
@KitMuse@eponaauthor.social avatar

@tomkindlon @longcovid @mecfs As someone with #fibromyalgia I find that we're mostly forgotten in the chronic illness community. While I would love to connect more, I have stopped talking about it because it's considered the "hysteria" of the modern era. I have some unique theories on what caused mine. But there is a much larger community around some illnesses than others.

FiStitchWitch, to martialartsmemes
@FiStitchWitch@mstdn.social avatar

I am going to adopt this as my new pain scale!

wolfsbruder, to mecfs
@wolfsbruder@babka.social avatar

So my pain level has hit 9, and I stayed there for the past two hours. and my sweet child is pissed and complaining that I am "acting like a whining little bitch"...

#fibromyalgia #mecfs #ChronicPain

tomkindlon, to fibromyalgia
@tomkindlon@disabled.social avatar
sky, to KindActions
@sky@cyberpunk.lol avatar

oh goddess no

they cut off my water

I'm about $350 behind

it has to be paid for them to cut the water back on

please, if anyone can help me get my water back

please

I'm a disabled non-binary person (ADHD and bipolar), my partners are both disabled as well (anxiety and depression, as well as my wife having fibromyalgia)

I'm working as much as I can, but my job doesn't pay a living wage

https://www.paypal.com/paypalme/tsbarnes

#mutualaid #MutualAidRequest #transmutualaid #transcrowdfund #help #bills #water #disabled #fibromyalgia #autism #adhd

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
tomkindlon,
@tomkindlon@disabled.social avatar

2/

In this study, having previously received an functional somatic syndrome diagnosis such as CFS was associated with female sex and poor health-related quality of life. No association was found for health anxiety, kinesiophobia and physical activity.

@mecfs @fibromyalgia @ibs #mecfs #cfs #fibromyalgia #ibs

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar
ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
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>

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. #ChronicPain #Fibromyalgia

LeeFromVT, to music
@LeeFromVT@masto.ai avatar
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

#MEcfs #PwME #Fibromyalgia #SciArt #MastodonArt #Embroidery

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
lia_pas, to mecfs
@lia_pas@vis.social avatar

'she breathed' (2018) 🫁
For #BAMonth2024, Opera Mariposa is showcasing this embroidery by me, a multidisciplinary artist with #MECFS. Check it out with exclusive insights and enter to win 'she breathed' art postcards til June 1! #SciArt #MastodonArt https://operamariposa.com/art-showcase/lia-pas/she-breathed/

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

@lia_pas That is such a beautiful piece! 😍

It took me a while to figure out that BA Month stands for "Benefit & Awareness Month" so I'm sharing this link with more info.

https://operamariposa.com/benefit-awareness/#calendar

Opera Mariposa is helping to raise money for the ME | FM Society of BC (British Columbia).

#MEcfs #PwME #Fibromyalgia #LongCovid #NEISvoid #SciArt #Embroidery

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
sfwrtr, to 13thFloor
@sfwrtr@eldritch.cafe avatar

#WordWeavers 2404.29 — Who's feeling shame in your story? Is it justified?

/It's'a [#brainfog #fibromyalgia day, but I'm gonna write this to get something out. Hoping it's coherent. —RS/]

This question made me think hard for quite awhile until I—like an artist or a photographer deciphering how shadow defines volume and dimension—saw /negative space/ in a story... where something wasn't. Emptiness.

Wintereyes /doesn't/ feel #shame, and I'm realizing this is an #emotion with which I can make a #feminist point in my story. Whilst shame is IMHO used more often to control women than it is men, it is both incidious and /learned./ Shame is a combination of built-in emotions programmed into a person to make a person self-punish for "wrong" behavior even if it's secret; it's related to, but not the same as guilt.

Wintereyes was raised by wolves, but not until she was 7 when her "gift" caused her to seek a second set of parents. Her early childhood will require investigation in another story, but I'm pretty sure her human parents didn't teach her the emotion; it's not that she forgot. Forced to live again amongst humans over a decade later, to become more human, people's behavior baffles her. Late in the story, when she's asked to disrobe by stylist at a modeling shoot, and does without a thought, the stylist observes, "You don't feel shame, do you?" This is where Wintereyes will go off like a firecracker, and it should be very interesting.

The stylist may actually feel ashamed...

The author is [#actuallyautistic and retains copyright (c)2024 R..S.]

#BoostingIsSharing and #CommentingIsCool

#fiction #fantasy #sff #writing #writer #writers #author #writingcommunity #writersOfMastodon
#RSdiscussion
#RSstory #RSInklingsStory #psychology

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

New 12-minute video:

"I believe microglia are the primary culprit behind #fibromyalgia, #MECFS, #GulfWarIllness, #LongCOVID, and other #chronicpain & fatigue disorders.

Here is a quick video on what I am trying to do to fix the problem. - Jarred Younger"
https://www.youtube.com/watch?v=XggO__DlALw

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #PwME @longcovid
#PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
@chronicpain @fibromyalgia
#Fibro #FMS #FM

Eeyore_Syndrome, (edited ) to cannabis in The Psychology of Getting High—a Lot
@Eeyore_Syndrome@sh.itjust.works avatar

I’m addicted to not being in pain.

I’m addicted to feeling like not wanting to die because of pain 24/7.

#Fibromyalgia

Nerve pain just the top of the list of horrible things I feel at random.

Mux, to queer
@Mux@swingset.social avatar

Hello, I'm Mux. I'm a #neurospicy, #queer musician based in #Germany and I'm having a bit of financial hardship.

Long story short, I got burned out, fired, diagnosed with #depression and #fibromyalgia, and refused any kind of assistance from the state.

Currently I'm surviving by scavenging my wife's dental fund, but that bill will come due soon enough.

Goal: 527€/3000€

Librapay: https://liberapay.com/mux2000/
Bandcamp: https://mux2000.bandcamp.com/
#MutualAid

ChronicIllnessHumor, to mecfs
@ChronicIllnessHumor@mastodon.social avatar
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