@AshleyYelhsa1 I cry for the people who got this young. I cry for all of us, but I am extra heartbroken for the people who got it young.
I got mono when I was 31 and I didn’t know what was wrong with me. I had just moved to a new city and I had a great job that I loved that I could walk to from my luxury high-rise apartment. Then suddenly I couldn’t even sit up in bed without feeling like I was dying. Every time I ate my stomach hurt. I couldn’t even read books because I felt like I had a concussion.
I would rest and then I would try to go back to work, but after one day I would be sick all over again, and I would rest and try to go back to work, but then I would be sick again, and this went on for months.
My doctor ran a CBC blood test & I had an upper endoscopy & when those look fine she decided I had mental illness. She sent me to psychiatry & I went because I figured if I was doing this to myself I must REALLY be mentally ill.
That psychiatrist listened to me talk and he handed me a lab slip for mono. He told me that I don’t need him because I have mono. He said I could come back if I wanted to but I’m not mentally ill, I have EBV. He was totally right.
So I gave up my job and I went somewhere warm and I rested in a quiet apartment with my cat for months. I got well enough to slowly go back to work, I had another career, I finished college, and I forgot I was ever sick.
Then I got in a car accident that wrecked my neck & the next morning I woke up feeling exactly like I when I had mono. And it never went away. At that point I was 39 and I never recovered. I am 52 now, and I had a hell of a time getting on disability, I still have poverty trauma from those years.
But at least I got to do all the things I wanted to do, I got to live everywhere I wanted to live, I finished college, and I had a couple decent careers.
LDN really helped me get out of bed and not need daily naps after I started it in 2020, but perimenopause has me back to only having one usable hour a day again and it’s scary.
My heart breaks for the young people who didn’t get to live their life before it was taken from them.
From #MEAction
Severe ME Artists Project, 2025:
https://www.meartistsproject.com/severe-me-artists-project-2025
Over 100 art pieces were submitted by severe ME patients. The website includes a video compilation of the artwork.
August 8th was chosen to honor Sophia Mirza, a severe ME patient who died of the disease. Severe ME Awareness Day was started by the 25 Percent ME Group in 2013.
Video (about 4 minutes) for #SevereMEAwarenessDay by Anil van der Zee:
https://www.youtube.com/watch?v=qVDwvthD3F0
"I know firsthand how hard it can be, and not just because it's debilitating, but also because the more ill you become, the less care you receive, even though you need it the most …
If I hadn't lived it, I would have thought that a video like this was probably exaggerated. But I am not exaggerating"
Severe ME Day – 8th August – is dedicated to raising awareness about severe ME and remembering those who have lost their lives to this disease. Estimates suggest that around 25% of individuals with ME suffer from the severe form.
Read more: https://bit.ly/SevereMEday25
Aun así no es fácil: los ruidos, las voces, el tacto, los olores, la sola presencia de una persona. Pero cualquier cosa es mejor que la situación en la que (sobre)vivía.
#320 #8agosto Día de la #EncefalomielitisMiálgica Severa 🛌🏼 https://domandoallobo.blogspot.com/2025/08/320-Dia--Encefalomielitis-Mialgica-Severa.html
#DíaEMSevera #ConcienciaciónEM #AcabarConElAbandono #MyalgicEncephalomyelitis #SevereMEDay #MEAwareness #EndTheNeglect #pwME
2/2
Phew, that's a tough read. I can relate to this text a lot more than I wish I could.
Honestly, I don't like sharing links that make people feel worse, but if you want a glimpse of what living with ME/CFS feels like, here you go:
https://www.omf.ngo/severe-me-cfs-day/
Donations for more research and/or lobbying – either now or during the more "traditional" donation season – are what we need, so every consideration in that regard is highly appreciated.
[continued from above]
Help me, help us. Some of us need money. Check in on your ill friends. Maybe you can lend us a hand so we have food and water.
Save yourself and wear a mask. Rest if you get ill. Rest.
I am so tired. So tired.
https://aldercone.itch.io/help-me-zine-for-world-me-day-2023 (cwing very sad)
https://aldercone.itch.io/caring-for-evel-zine (cwing being silly about serious things)
#myalgicencephalomyelitis #severeME #severeMEday #MEcfs #disability #chronicIllness #PwME
[continued from above]
I can still think a little.
Thinking or making decisions or reacting is hard, and slow, and frustrating.
Always struggling.
Struggling to be heard by doctors, struggling with white supremacy, struggling to keep a roof over my children's heads, struggling to access life.
[continued in reply]
#myalgicencephalomyelitis #severeME #severeMEday #MEcfs #disability #chronicIllness #PwME
Yann (ME/LC)
Maggie Maybe
ahimsa
Tom Kindlon
Domando Al Lobo 🐺
Sven (retired)
5 🌳 walk into a bar… & say ow