#pwme

[myalgicencephalomyelitiscfstom]

Key themes from this conversation:

Grief is at the center of the chronic illness experience for many people but often goes unnamed. As people lose parts of their life–capabilities, spontaneity, aspects of identity, there is inevitably a grieving process associated with those losses. Calling it “grief” helps provide narrative and understanding, and helps us feel like it’s a normal process.

Illness, and particularly energy-limiting illnesses, changes your relationship with time, since what you do today impacts your life next week, and you don’t have full control over what your capabilities will be on any given day. This reality often draws people towards cyclical or seasonal ways of living, where we recognize that, while we have some control over our energy patterns, ultimately the external and internal weather of the day are out of our control.

Groups of chronically ill and disabled people operating together can give us a model for a unique type of emergent organizing. When one person needs to rest, or can’t take on a task because the lights are too bright or any other reason, other people naturally step in with full understanding and without questioning the limitation. What would work look like in this emergent model?

#chronic illness #spoonie #chronically ill #PwME #Spoonielife

[chronicallydragons]

I love how people with chronic pain can be at extreme levels of pain and just be like “My body is ouchie”

#it’s me my body is ouchie #chronic pain #chronic illness #disabled #fibromyalgia #me/cfs #gastroparesis #disability #migraine #postural orthostatic tachycardia syndrome #chronic fatigue #chronic fatigue syndrome #post exertional malaise #pwme #pots #spoonie

[haridraws]

Hourly comic day always ends up being chronic illness diaries for me. But seeing other disabled people share vulnerable stuff honestly helps me a lot, and if I can pass just a bit of that feeling along, it'll be worth it.

#hourly comic day #hourly comic day 2024 #pwME #mecfs #chronic illness

[thesecretlifeofmecfs]

#disability memes #chronic illness memes #myalgic encephalomyelitis #mecfs #cfsme #chronic fatigue syndrome #chronic illness #pwme

[madelinenerdfighter]

The richochet article is out

Also the journalist did a tweet thread with highlights from the article if that's something that you're interested on sharing Facebook and Instagram won't let you share a news links from Canada https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19

@allthecanadianpolitics

#ableism #disabled #disability #Canadian #Canada #british columbia #myalgic encephalomyelitis #pwme #postviral #longcovid #canpoli #bcpoli

[life-as-a-gummy-bear]

Please donate and share widely. Any amount helps. I’m in the latter stages of ME (Myalgic Encephalomyelitis) a degenerative multi-system neuroimmulogical disease. We need mutual aid to be able to afford the medical equipment, meds, physical therapies and other things that can help mitigate some of pain and sickness im suffering daily. Please help ❤️

#mutual aid #mutual assistance #medical fundraiser #pwme #mecfs #myalgic encephalomyelitis #severe MECFS #very severe MECFS #signal boost #pls share #share widely #chronic illness #chronic pain #bedbound #trans and disabled #trans nonbinary #autistic community #trans community #need help #need financial assistance #please donate #millions missing

[smallrat36wagon]

Take one minute to sign this petition to hopefully save someone's life. No money needed. Thank you.

#me/cfs #mecfs #pwme #mutual aid #petition

[scaredpotter]

hello everyone who's still here. I'm unfortunately very sick and have been for a long time. I've recently made an instagram where I talk about it more openly if you wanna follow.

take care xxx

#if you rb i love u #me/cfs #pwme

[avisminutia]

I've been struggling with my energy level lately. There are never enough spoons. But block carving is something that I find I can often do even when my energy is low.

#linocut #polyphemusmoth #moth #pwme #polyphemus #my art #block printing

[iammadelinepod]

I was really struggling today with working to do advocacy while also trying to navigate issues with my landlords and trying to figure out how to get a human rights case started and how to have enough time to see that through all with so many things asking energy and money of me that I don't have.

So to decompress and collect myself to get rolling I did a podcast episode. In it I talk not just about the pain and exhaustion of pushing through to get ready for the second fire inspection, but individual and collective ableism creating a situation that sends the message, in no uncertain terms, whether overt or covert, my country wants me dead. But I also talk about how for most people it's really a lack of understanding and totally unconscious. And how each person working to understand means we begin to address that larger conscious or unconscious collective ableism infecting bureaucracies, medicine, journalism, politics and the larger society

Also I just realized I passed my 44th anniversary of being post viral epstein-barr😟. Sadly still no improvements to supports or research yet. But I haven't finished fighting and with your help I will continue to as long as I can!

Links for you to have handy

RICHOCHET article, (please share💗)

And here is a tweet thread by the journalist who wrote the Ricochet article so that you can share it on Facebook or Instagram as Canadian news links are still not permitted there

Listen to the most recent episode of my podcast: Crush https://anchor.fm/i-am-madeline/episodes/Crush-e2c5131

#british columbia #canada #canadian #disability #disability pride #ableism #disabled #pwme #podcast #myalgic encephalomyelitis #mecfs #pwd #pwd on assistance #Disability assistance #Vancouver #abled #chronic illness #chronic pain #chronically ill #canpoli #bcpoli #Canadian politics #human rights #disability bias #gender bias #discrimination #accessibility #accessibility supports #politics #Ombudsman

[atikas]

Unrest (Jennifer Brea, 2017)

The full documentary is now available to watch for free on YouTube. Please consider watching. People need to know the truth of this illness so that we can get the funding we need and deserve. This is another example of an illness that affects mostly women and is treated horrifically by the medical system.

#myalgic encephalomyelitis #medical misogyny #mecfs #pwme #chronic fatigue syndrome #myalgice #chronic illness #jennifer brea #chronically ill #spoonie #unrest film #the full documentary is now up on the unrest film YouTube channel for free #* #Youtube

[myalgicencephalomyelitiscfstom]

A popular article in the ME/CFS community that's in the Guardian today

#PwME #mecfs #cfs #myalgic encephalomyelitis #chronic fatigue syndrome

[chronicallydragons]

Um, excuse me, ma’am. I need that

Alt text in image

#kitten #Maine coon mix #wheelchair #ambulatory wheelchair user #chronic illness #disability #me/cfs #pwME #POTS #fibromyalgia #gastroparesis #migraine #wheelchair thief

[haridraws]

"...they are confusing, not always by sincere error, the Escape of the Prisoner with the Flight of the Deserter." Tolkien: On Fairy Stories.

#hourly comic day #hourly comic day 2024 #chronic illness #pwME

[thesecretlifeofmecfs]

It doesn't help when doctors repeatedly do very little to actually help you.

When you have to go into each appointment having to explain your condition and educate the doctors.

When doctors consistently don't know what to do to help you.

When doctors gaslight you.

It's exhausting.

I'm so tired.

#chronic illness #spoonie #spoonie life #spoonie blog #myalgic encephalomyelitis #mecfs #cfsme #pwme #chronic fatigue syndrome #dysautonomia #rare diseases #zebras #ehlers danlos syndrome

[impactofhealth]

7 Steps to Health Equity: Addressing Root Causes Now in 2024

Health equity is more than just equal access to healthcare services. It means giving everyone a fair chance to be as healthy as possible, no matter their background or circumstances. This includes addressing the social and economic factors that can create barriers to good health. Read More...

#healthequity #publichealth #healthdisparities #covid #healthcare #health #womenshealth #equity #blackhealthmatters #blackhealth #mentalhealth #community #wellness #healtheducation #communityhealth #healthdisparity #pwme #socialdeterminantsofhealth #publichealthmatters #globalhealth #myalgice #mastcellactivationsyndrome #premenstrualdysphoricdisorder #meaction #myalgicencephalomyelitis #heds #nightingales #unexplainedweightloss #saveliznevra #millionsmissing