Creature of Chaos

Genderqueer/queer. Autistic. Hypermobile-EDS, POTS, ME/CFS, fibro. Complex PTSD. They/them. 32. Trying to do better than my predecessors did and break generational curses (and stop hating myself along the way).

[spookietrex]

Hi, I'm Spookie! I'm 32. I'm a they/them.

This is my main blog. There's a little bit of everything on here:

-my art (not everything on my blog is my own. Sometimes I find things on Facebook, but I ALWAYS try to find the source. I just can't see things from mobile, which is where I primarily blog from.)

-my autistic meltdown rants

-coping skills for all the above

-chronic illness stuff

-my animals

-my trauma vents/texts

-stories from me!

-educational trauma posts

-in general things I like.

Asks: NO GAZA ASKS OR FUNDRAISERS. I AM POOR AND IT MAKES MY DISABILITIES WORSE BECAUSE I GET STRESSED OUT.

I'm social but have little energy some days. I'd love to hear from you. I spend a lot of time in bed but have 4 main mobility aids: a cane, walker, a rollator, and a wheelchair.

I will get back to you when I can. I don't have a lot of people to talk to since I'm relatively new to the area I live. But as I am autistic and chronically in pain, sometimes I have days where I just shut down and don't have the spoons to do things and I just forget that I exist.

[fibro-memes]

[catchymemes]

[bebsi-cola]

disabled people are often in permacrisis

[bebsi-cola]

there's never enough money each month. there's always an unexpected illness. new symptoms pop up or old symptoms flare up. meds have to be managed always and refilled constantly and any refill has the opportunity to go wrong. any regular care has the opportunity to go wrong. any mistake can send your health spiralling. it's always "i just need to get through this bad patch" but as soon as one ends another begins. another crisis begins in the middle of the last crisis. managing one thing leaves another thing to be neglected until that becomes a major issue and has to be managed asap and the cycle starts anew over and over and over

[chingaderita]

I got told by someone who manages a mutual aid resource that I was getting suspended for asking constantly for help.

I know she meant well, she wants this resource to flourish and help many people in the years to come.

But I still got suspended for 12 weeks.

The reason was donors fatigue. Like genuinely, look it up, it's apparently a real thing.

People got tired of seeing me weekly ask for help to afford groceries, medication, my healthcare monthly renewal, rent, house repairs to deal with the humidity, black mold, rust, falling roof, falling ceiling, falling wall or the water leak in the lightbulb and many other things.

The thing is I am chronically ill, I have no degree or higher education than my high school certificate, my partner is the same except for some english certificates that he has an advanced language.

We take care of our kids, the cats we've rescued from the streets and his parents and sister after they lost everything in a house fire.

We are always struggling to stay afloat paying the bills, keeping a roof on our heads and feeding our family while chronically ill, with chronic pain, dare I say some of us are disabled.

And people got tired of us. I got told because I keep changing what our main need/goal is I look like a scammer.

And ok, I get it, it must be really hard to see people struggle all the time to stay alive when all you want is to share a funny meme, cat pics, fanart and fan fiction.

But what about begging fatigue? What about poor fatigue?

Having to shake our can and beg for a kofi every day is exhausting. And no amount seems to fix our struggles and get us out of the red because by the time we get some help our bills are already overdue, we've got extra charges, we no longer need only the groceries and regular medication, now we need to run to the hospital or we already did and all that stacks up.

And every day, every week, month after month, year after year it just gets worse.

Chronic illness and disability are disabling in more than the physical way, we are shunned from every place for being considered a burden.

Show more compassion, you have no idea how hard it is.

[darkacademiavibes]

Borrow books, share pdfs, email ebooks. Understand that academia is expensive. Make it more accessible, help someone gain knowledge. Dismantle the disparity with second-hand books and hand-me-downs. Share. Share. Share.

[spookietrex]

If you google the articles you want to read, especially if you have a library card, you can find a lot of them free, especially if you contact the author. They just want people to read their stuff.

Anna's Archive is a great resource for free books. Just use a VPN.

[spookietrex]

I love being in a healthy relationship. Yesterday, I had a really bad flashback and lost damn near the whole day, but my wonderful partner stayed with me all day, making sure that I felt supported and safe.

As a little reward, I bought them a little present because I love them.

[spookietrex]

Recently rediscovered the GODS-SEND that is KT tape. I bought it in my favorite color (matches my cane and rollator, but not my wheelchair. My wheelchair matches my silvery-grey hair) and actually feel able to do things again? Stabilization?? Where have you been!?

[spookietrex]

Ever just wake up and get punched in the face by your trauma with no reasoning why?

[spookietrex]

You ever have to filter what you watch because if you don't, your cat will jump on the dresser to get to the TV? No, just me?

[spookietrex]

One of my favorite creators has AuDHD like me. But unlike me, she hasn't worked through her trauma and says things like, "Sometimes you gotta mask no matter what" and "Sometimes don't let them know. Hold it in." GIRL, no.

[ordinarytalk]

Recovering from autistic burnout as a high-masking adult:

To recover, you literally need to manually learn skills that most people learn as a toddler

You need to learn what makes your body uncomfortable, and what to do to fix it

If you are high-masking, that usually means that you have learned to ignore every distress signal your body sends unless it is a distress signal that a neurotypical person would recognize. People have likely been unintentionally gaslighting you about your lived experience your entire life

If you feel bad or panicked for no reason, stop and try to pay attention to your body. Are you tense? You are likely feeling physical pain somewhere. If you've been gaslit about your pain your entire life, you might not be able to identify it.

Go through a sensory checklist.

SIGHT: Try closing and covering your eyes. If this gives you relief, the lights are probably too bright. You may also need differently-colored lights

SOUND: Cover your ears. Does this give you relief? If so, you may need earplugs or noise canceling headphones. You may also benefit from a neutral or pleasant background noise, like soft music or brown noise.

TOUCH: Are your clothes uncomfortable? Your chair? Your body? Do you feel greasy, like you need a shower? Do you need softer, sensory-friendly clothing?

TASTE: Do you need to brush your teeth or tongue? Would chewing on something help?

SMELL: Is there a strong or unpleasant smell in the room? Do you need to clean or empty a trash can? Would an air purifier help? Would a pleasant smell like a candle help?

INTEROCEPTION: Are you hungry? Thirsty? Tired? How is your posture? Are any of your muscles tight or sore? Scan your body slowly from head to feet, tensing and loosening each group of muscles. Going for a walk or doing a series of quick stretches may help a lot.

Learning how to do this stuff is not intuitive, if you've had an entire lifetime of gaslighting telling you that everything hurting you isn't a big deal and you're being dramatic over nothing.

This takes time, it takes work, it's not intuitive, and it's hard. Most people forget how hard it is, because they learned this as toddlers.

If you want to recover, you need to relearn your whole body. And get over your idea of "normal" and just wear the damn sunglasses and put on the headphones. If people stare, fuck em. You're disabled and they can deal with that.

[whatbigotspost]

What a great post! So helpful.

People often ask me about my unmasking journey and express surprise to hear that such a big part of it has been 1) accepting I must avoid light/the sun and 2) wearing clothes I can stand.

I’ll play it jokey and say it like “well it took me far too long to realize that my former wardrobe made me want to jump off a bridge.” Or “turns out my old underwear was anti-autistic.” Or “for whatever reason when it’s too bright, I can’t think.”

It sounds silly to some people. It’s very hard for the average allistic person to understand how severed I was from what my physical person was feeling. It served me to be disembodied to survive for a long time. Until it didn’t.

[headspace-hotel]

eliminating all polyester blends from my wardrobe (and polyester in general) changed my fucking life

[spookietrex]

I forgot how much I hate EMGs and specialists. I had to do ANOTHER strength test, which always hurts my body because my joints are unstable and tight. They also just casually shoved needles in both of my arms (not where the doctor ordered it) and shoved the needles in harder when I made a "this hurts" face.

[spookietrex]

One of the last times I was in the hospital for SI, I'd attempted to overdose on some pills. They promptly took me back and locked me up, away from my entire support system.

But my absolute favorite part of this story? When I got sick and didn't have enough time to tell them I was nauseous and needed a bag, the nurses/tech watching me literally wrote "X threw up on purpose." Pray tell, how does one "throw up on purpose"?

[spookietrex]

Aaaaaand punched in the face by a trigger. The good thing with being time blind is that you never know what the date is so it can't trigger you. The bad new with being time blind is that when you DO realize the date, you get punched extra hard because you weren't expecting it.

[spookietrex]

I'm just collecting rare diagnoses like Pokémon. I now have a confirmed diagnosis of Eagle Syndrome, which requires surgery to fix, thanks to 2 more MRIs. (Up to 5 in 3 years!)

[wizardarchetypes]

trying to phrase this in a way that doesn't make me sound like i'm being a manic pixie dream girl etc. but it's so fucking irritating being a confident & adventurous person who also has a known bipolar diagnosis, because people will literally try to ascribe mania to any behavior they'd personally be uncomfortable doing. i'm so serious, like everything is questioned.

people have asked me if i'm manic when i've:

cut my own bangs

gone on a spontaneous camping trip (camping is my known lifelong hobby)

slept with someone on a first date

planned a last-minute weekend trip

gone to see a late-night movie alone

like if you're afraid to do stuff alone that's fine but it's not a fucking symptom that i know how to cut my own hair.

once i was excitedly infodumping about my special interest (autistic) and someone said 'you're talking really fast, are you manic right now?'

[spookietrex]

So I'm literally just quoting Devon Price (Author of Unmasking Autism) and this might just be because people don't understand all the various types of autism, including female autism/"Manic pixie dream girl" vibes.

[spookietrex]

Fingers crossed I can actually take my meds tonight and be more of a person without having to mask tomorrow.