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severe mecfs | perpetually eepy

[🗝 @keysred]

#mecfs seven years coming up. spending your entire twenties bedridden is such a vibe killer.

[🗝 @keysred]

I'm so tired.

[🗝 @keysred]

A poem about a grim reaper meeting a #pwME

[🗝 @keysred]

I did NOT expect to see ME discussed in The Cambridge Illustrated History of Medicine, published in 1996. In Chapter 3, "What is Disease" it mentions ME, both as myalgic encephalomyelitis and CFS, explaining that medical professionals made "hostile and dismissive noises." Wow.

[👻ghost of submersibles ablaze🌊 @MECFScomrade]

ME/CFS

[🗝 @keysred]

Even if I did get better one day...how would a person go back to society after being tortured so cruelly? How can I possibly go through the motions knowing what it feels like to be imprisoned, isolated, in pain for years on end? It's impossible. My humanity is obliterated.

[🗝 @keysred]

study it, but the human mind doesn't allow it to be grasped intimately. Why? Because humans are not meant to experience a hell so cruel it must be described with ancient imagery. That's what #SevereME is; a horrific reality we're subjected to. One we are forced to grasp.

[🗝 @keysred]

As a former writer, it's really astounding to me how every person who suffers from ME describes it the same way. It's the same imagery of hell that Dante used. It's so visceral and haunting that it genuinely can't be comprehended unless its experienced. Others can imagine it, or

[🗝 @keysred]

#SevereME I'll be 27 next month. Then 3 months after that will be my 7 year anniversary of having this slow, torturous death. We do not "live" with this disease. We are slowly tortured to death by it.

[🗝 @keysred]

me:
"People with severe mecfs can paint! I am proof!"
also me for the entire month after picking up a paintbrush:

[🗝 @keysred]

And then to come to terms with the POTENTIAL that was wasted bcuz this fuckass disease. Like if someone asks what mecfs is my brain compiles every single little detail and then scrambles it up like a jigsaw puzzle for fun meanwhile im stuttering like "i eepy?"

[🗝 @keysred]

Having a high iq as a #pwME sucks. I have the capacity to learn complex shit but w/ aphasia and amnesia so im constantly forgetting/confusing the knowledge i consume. And then to understand this disease on a microscopic lvl but also not remembering the words to explain it??? 💀

[🗝 @keysred]

my tolerance for people who never experienced the severe end of mecfs is on the fucking floor.

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if you scroll down my profile its actually scary how right i am constantly.

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thinking about that "healthcare professional" who worked as a receptionist in optometry and that somehow qualified him to have ableist opinions 💀

[🗝 @keysred]

It just...is. I am nothing at all. Everyone else is nothing. Everything is nothing. I'm just floating in a tank full of sharks, bleeding out.

[🗝 @keysred]

I've been emotionally broken since my best friend died. My empathy for strangers is dialed down to zero. I'm trying to remember how to be good and kind, but can't seem to. This numbness does help in a way. I cant process the daily pain and trauma of having me/cfs in this state.

[🗝 @keysred]

Me making art as a you-know-what

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But it's really quite annoying to see how many people are saying "if you can do this you aren't severe" when in fact, I very much am.

[🗝 @keysred]

It's also important to mention, that me doing this comes with consequences, as life with this disease does. Everything I choose to do is carefully constructed. I make allowances for the pain and sickness making art comes with.

[🗝 @keysred]

I won't say this with a tag, so it doesnt find the wrong audience, but as a person in the severe category, I can and do make art. There are people who are acting like it's impossible to do. For reference, it usually looks like this. I have the privilige of having a caretaker who

[🗝 @keysred]

Many people are not comfortable with getting sicker in order to do an activity like this. That's okay too. I respect that as well.