thecreatureoftheshadows

[thecreatureoftheshadows]

I just want to find friends to go hang out with in cafes and drink coffee and hot chocolate and rant about fictional characters. But apparently that’s too much to ask for in my late 20s 😭

[thecreatureoftheshadows]

The exhaustion of having made it through a day is already too much for my chronically ill mind and body. And then you expect me to be productive and functional while maintaining a “pleasant” personality. Why don’t you just ask me to go build the pyramids as well since apparently now I’m capable of performing miracles?!?

[thecreatureoftheshadows]

“I hope that someday, somebody wants to hold you for twenty minutes straight, and that’s all they do. They don’t pull away. They don’t look at your face. They don’t try to kiss you. All they do is wrap you up in their arms, without an ounce of selfishness in it.”

— Unknown

[thecreatureoftheshadows]

When does this stop? When does this end? How much longer do I have to keep going in hopes of things eventually getting better? I am so freaking tired. And fed up. Of everything.

[thecreatureoftheshadows]

[thecreatureoftheshadows]

I hate when I complain that I am exhausted and people go “oh I’m tired too”. You do not understand, there is a difference.

Tired is something where you can just take a nap and feel better.

The type of tired I am is fatigued. A type of tired that you can’t sleep off, it’s prolonged and makes you feel weighed down and unable to do much. It’s not the same thing and I hate when people think it is. I wish I could sleep it off but I can’t since it’s not that type of tired.

[thecreatureoftheshadows]

Despite knowing all my life that I’m chronically ill, I still manage to get surprised every time I have a flare up (I’ve been ill since my birth, how is this still managing to surprise me?!? Smh…. Ik it’s probably coz every flare up is DIFFERENT & I am fed up of these new, mutated variants of flare ups… )

Been ill this week & I assumed it was because I idiotically went out without a face mask…. That was also probably a contributing factor but seeing this post reminded me of the fact that my exams literally finished a week ago & I have been ill since then 🙃

me, undiagnosed for the first 21 years of my life, not knowing what a flare up is:

huh i wonder why i get sick for a few days after every exam season. huh i wonder why i get sick for a few days after every tennis tournament. huh i wonder why i get sick for a few days after every tech week. huh i wonder why i get s

[thecreatureoftheshadows]

Anyone else mourn the time spent resting?

Like I need to clean, there's errands to run. Books I want to read. Lots of art and cooking I want to do.

But I just can't. I'm exhausted. I feel it seeping through me like warm sun.

[thecreatureoftheshadows]

People: the normal amount of pain is zero

Me, chronically ill: sounds sketchy but okay

[thecreatureoftheshadows]

Franz Kafka, 1912

[thecreatureoftheshadows]

“slut era” i whisper to myself as i rot in my bed, sick like a frail victorian child

[thecreatureoftheshadows]

Something I think people who don’t live with chronic illness don’t understand is that there is a big difference between resting to get better and resting to avoid getting worse.

[thecreatureoftheshadows]

There’s no such thing as work-life balance for neurodivergent & chronically ill people.

This is because everything in my life requires work:

maintaining friendships

keeping up with my hygiene

managing bills

making money

remembering my basic needs

sleeping regularly

outputting creatively

All requires some aspect of work for me.

And when everything in your life requires work, your balance goes out the window.

If you're neurodivergent and overwhelmed — I see you.

If you're chronically ill and overwhelmed — I see you.

You're not dysfunctional.

You're not incapable.

You're doing your best.

[thecreatureoftheshadows]

what is it with able bodied people saying “get well soon” after you say that you’re chronically ill?? like? i am not gonna? and i once literally responded with “i’m not gonna, it’s chronic, as in permanent.” and they went like “oh well, hope you get better!” like bro 💀

[thecreatureoftheshadows]

[thecreatureoftheshadows]

[thecreatureoftheshadows]

“I know many people who are suspicious of diagnoses—they think of them as labels that reduce or stigmatize. I knew, already, that a diagnosis was not going to answer all my questions. But I craved a diagnosis because it is a form of understanding.”

Meghan O'Rourke “The Invisible Kingdom: Reimagining Chronic Illness”