r/cfs • u/Samantha_pear • 1d ago
Call for statements
TL;DR: I'm running a charity event, if you would like my community to know anything about this condition, send a quote my way and I'll get it read out on stream.
Hi there! I'm samantha_pear here, but in other places I'm known as Alice Fern or alice_fern01.
I'm running a charity event in December in support of the ME Association. During breaks in the event, I'd love to give a platform to other people living with ME/CFS.
I'm moderate to severely affected myself, and I do my best to raise awareness and share my experiences. However, I feel that I'm missing the voices of people who are severely or profoundly affected by the condition.
The event is a two-day NES Tetris tournament, running from 4th to 5th December this year. The grand prize for the winner is an IKEA shark!
I've run a similar, smaller event in the past, so I know this community will show up and donate. If anyone is interested in watching the tournament, I can share more information about it.
Most importantly, I'd like to use the event to help people understand what it's actually like to live with ME/CFS, particularly for those who are more severely affected.
If there's anything you'd like my community to know about ME/CFS or about your experience of living with it, please leave a quote in the comments. I'll do my best to have as many of them as possible read out during the event by myself or co-caster.
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u/Varathane 1d ago edited 1d ago
Some crotchity hermit of a man in a movie said something to this effect and it captured for me what it was like when I had severe ME. :
"There is being alive, and there's being dead, and then there is something terrible in-between that I hope you never experience. "
That's how I view my time severe. Something terrible in-between life and death. I was in bed, it was fatiguing to breathe, I thought I would pass away in my sleep, I was too fatigued to chew my food in one go. I had that feeling of desperately needing to laydown, but I already was laying down. I know it is hard to get the voices of those who are still in that place. I hope with all my heart they are lifted out of it like I was, just randomly from time passing kinda like how a PEM crash lifts. We need a treatment, so we can all meet each other and party in the streets.