Top Tweets for #MeLife
Not a bad view when the weather and wildfires cooperate.
#MeLife
The highlight of my day
Listening and waiting for fam to leave the house so I can leave my room
Living like this is no fun, but made easier by not being able to get out of bed a lot
#MELife #LongCovidLife
😷💨
Hey, EVERYONE 🗺️
We all need this
Honest
Brutal
Truth
About
Living
Death
#MELife #MyalgicEncephalomyelitis
TRAILER: Buried Alive with M.E.
I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm.
People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death.
This film is
1/
I see things like this. I fret about it. I consider changing my phone access. Then I remember I live my life in a 10 mile radius 🤣🤣 #MELife
Turning off the Face ID ✅
Dentist rang to cancel this morning’s appointment. Was I wrong to go “yesssss!”? 🤣
I scheduled an extra shower specifically for this yesterday and now there’s no-one to appreciate my fragrant body 🤣 #MELife
Dave has gone home. Yesterday I went to look at his house (cousin drove) I recklessly walked up the stairs to inspect the new shower room. Was there 5 mins. Then on the way home we stopped at a cash point and I had to walk 20 metres. Today I feel like I’ve been run over. #MELife
When I can cook, I do it ME style with my feet up! 😆 #MELife
Had anything changed?
When your HIV+ friend tells you Long COVID has been debunked, stigma is something anyone can be blind to.
#MELife #LongCovidLife
The "immune overload hypothesis" of AIDS was that the "gay lifestyle" caused so much stress on the body that the immune system simply gave up. Let this serve as a reminder that a clear marker of disease is not enough to de-stigmatise illness and to promote good science
Concrete boots have taken on a very different meaning in the 21st century.
Very different.
#PEM_PENE_PESE #MELife
#LongCovidLife
When you know for sure that your life has changed…for the worse.
Hanging washing out in the rain because one day it will be dry.
One day.
#LongCovidLife #MELife #FUSARSCoV2
I’ve lent a good friend my electric wheelchair for a few days away on a city break. I said “don’t forget to send photos”. She will and then I’ll be sad because now my bloody wheelchair is going out more than me! #MELife
“While inspiring hope is valuable, it is equally important not to spread false hope.”
#MELife #LongCovidLife
A slam dunk well researched response by Michiel Tack on the piece by @PaulGarnerWoof et al. Worth the read!!!
https://t.co/AVYoaa2E21
Week 14 PEM/PENE.
Wonder what shitfsckery is going to be thrown at me by govt depts, shipping co, border force, NDIS, housing, or any number of other organisations that keep demanding more than what I’m capable of?
#MELife #LongCovidLife #IsNoLife
Today she’s serving Crumple Chic.
If she can’t cook, she definitely can’t iron.
First NDIS appointment.
#LongCOVIDLife #MELife
After overdoing it a bit, my head was zingy and super sound sensitive. Put my Flare earplugs in to take the edge off because I wanted to stay watching tv with Dave. Fast forward a couple of hours, completely forgot and was panicking that my hearing was going! 🤦♀️🙄🤣 #MELife
Post Exertional Neuroimmune Exhaustion - PENE
Post Exertional Symptom Exacerbation - PESE
Post Exertional Malaise - PEM
#MELife #LongCOVIDLife
As hard as it is to understand exertion intolerance in ME/CFS, it takes another full leap to grasp that over-exertion can reduce the threshold of what qualifies as exertion.
そして、そのいきいきコミュニティマルシェで、#melife さんのブースにふらっと行ってみたらね…、あかんでした…あかんのです…
ツボすぎるお洋服がたくさんあってですね……、わあああ…‼︎
この頃頑張っているしいいよね…(自分に言い訳)
How #MECFS & #LongCovid people laugh when they watch a jail movie where an inmate is incarcerated in solitary confinement for 3 days and comes out raving like a loon, eating a bar of soap like it’s a succulent peach.
#MELife
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