spookietrex

[spookietrex]

Story Time with Spooky

So when I was like 14-18, my mom asked my grandma and her church to sponsor me to go to this summer adventure camp. It was pretty fun, minus all the Christianity shoved down my throat. Anyway, there was white water rafting on this trip and we had this joke for the new campers called "beaver sharks" that would bite people if you weren't paying close enough attention. I didn't even catch the first year that they weren't real. (Whoops.) BUT the most important part of the story was that my nickname at camp was "Sharkbait." 16 years later and my wife had to explain to me that "You know why they call Nemo sharkbait right? Because he's disabled." Apparently I got disability validation when I didn't know I was disabled as a kid and my own family wouldn't validate my symptoms.

#funny story #spookie #story time with spookie #summer camp #throwback #disabled and proud #cripple punk #cripple posting #cripple shit #disabled #physically disabled #fuck you eds #eds zebra #hypermobile joints #hypermobile ehlers danlos #hypermobility #ehlers danlos type 3 #ehlers danlos problems #ehlers danlos #ehlers danlos zebra #ehlers danlos syndrome #my childhood #childhood #living with pots #potsie #pots #spoonies #autistic adult #finding nemo #sharkbait

[spookietrex]

Sometimes u just need to sob and scream and cry and bitch about ur disability

I think a lot of people feel like they need to be at completely at peace with their disability

And you don’t!

Be mad be sad be pissed off!

#when my wife just lets me cry about the things i cant do anymore its so helpful #the other day I cried about being disabled which I barely ever do #it’s ok to be sad over it #you don’t have to always be proud #i cried because i can't run anymore #i cried because i can't work as a counselor anymore #i cried because i have to reparent myself #i cried because I'm exhausted #i cried because it hurts #i screamed because this isn't fair #my twenties were taken from me #i'm grumpy #i'm mad about it #angry cripple #sad cripple

[spookietrex]

I hate the look on able-bodied people's faces when you can't do a thing that you could do the day before. The look of disappointment, confusion, the "Oh but you could do it before. Are you SURE you can't do it?" Like yes, Brenda, I'm sure that I am in too much pain to function/move from my bed right now so going for a walk when I could move 50 feet yesterday without my cane IS too much.

#angry cripple #crip punk #cripple punk #cripple posting #disabilities #invisible disability #physically disabled #disabled #physical disabilities #this is about physical disabilities please don't derail this post #ehlers danlos type 3 #ehlers danlos #ehlers danlos problems #ehlers danlos zebra #ehlers danlos syndrome #hypermobile ehlers danlos #fuck you eds #eds zebra #living with pots #fuck you pots #potsie #pots #fibro #fibromyalgia #fibro problems #fibropain #chronic illness #chronic pain #chronically ill #ableism

[spookietrex]

Being with another trans person (but just in general someone who respects your pronouns) is amazing. I'm AFAB and have a lot of trauma surrounding that. I identify as nonbinary and trans-masc sometimes but my pronouns are they/them. I get physically uncomfortable when called she/her. Sometimes he/him but usually I'm less grumpy about that if it fits my mood.

My wife was raised in the super respectful culture where one has to say "yes, ma'am" and "yes, sir". Well obviously those don't work for me so we had one she could just use all the time. We came up with a new one since I was using "Respected Person/RP" when I was working and it doesn't flow off the tongue easily. "Yes, creature."

Boom. Done. It's perfect for when I'm in enby mode and trans masc mode because I am obviously a creature in both modes and all the time.

Feel free to use it haha.

#terms of endearment #my terms #yes creature #yes maam #yes sir #politeness #manners #enby #nonbinary pride #afab nonbinary #nonbinary #non binary #nonhuman #creature #actually autism #autistic and proud #autistic adult #complex ptsd #transgender #trans #trans masc #trans boy #enby humor #nb #afab nb #afab transmasc #terms of affection #mannerisms #things my wife says #spookie

[spookietrex]

#lgbtq+ #gay #trans #queer #trans men #trans women #non binary #pride #pride month #transgender #nonbinary #trans joy #trans community #trans beauty #enby #androgynous #androgony #androgyne aesthetic #agender #don't gender me #trans man #trans masc #trans male #trans feminine #trans femme

[spookietrex]

#out of spoons #spoonies #spoon theory #spoons #spoonie #medical gaslighting #medical stigma #medical neglect

[spookietrex]

I made sure to delete my period apps as soon as my state made it illegal to have abortions. I am sterilized but my body is still convinced it can get pregnant. Period apps are being used to trap period-havers in situations where they are admitting to possible miscarriages and things due to using the app to report their periods. Be safe and stay aware.

#miscarriage #late period #period #abortion #period apps #ovia #ovulation #cycle tracking

[spookietrex]

sometimes your disability actually does stop you from achieving the things you want to do

[spookietrex]

Me *stands up*

My body *heart rate increases at least 20 bpm, the world goes black and tingly/head spinny, I very nearly pass out*

#chronic illness #chronic pain #chronic fatigue #spoonie #chronically ill #disability #invisible illness #living with pots #fuck you pots #potsie #pots #pots syndrome #postural orthostatic tachycardia syndrome #activities of daily living #spoonies #spoon theory #out of spoons #i don't have enough spoons for this #low spoons #spoons #my body is trying to kill me #why do i pass out when i stand up

[spookietrex]

#disabled and proud #physically disabled #disabled #disability advocacy #disabilities #physical disability #invisible disability #disabilties #out of spoons #spoonies #spoon theory #spoons #spoonie #low spoons #fibro #fibromyalgia #autistic adult #autistic and proud #autistic #autism #actually autistic #autistic things #living with pots #fuck you pots #potsie #pots #pots syndrome #eds zebra #ehlers danlos #ehlers danlos zebra

[spookietrex]

Story Time with Spookie!

So let me just tell you a kind of infuriating, kind of funny story about mental health hospitalizations. (If you're only here for the funny bits, stick to the last 5 paragraphs!) This is a true story that I experienced. Names have been changed.

Tw: sexual abuse, involuntary mental health hospitalization, stalking

So for context, I am an ambulatory wheelchair user due to hypermobile Ehlers-Danlos, POTS, and fibromyalgia. I have severe PTSD from multiple incidents, borderline personality disorder, autism (but mask almost automatically due to my trauma. I did extremely well in society before my autistic burnout. I am now experiencing severe symptoms), shaking/tremors/possible seizures (current diagnosis is functional neurological disorder but I have severe cognitive decline. Now find simple children's math books complicated (spent 45 minutes on one problem today in a number puzzle workbook for ages 7+), severe depression/anxiety, but most importantly I have severe trust issues with medical professionals because they keep involuntarily hospitalizing me when I, my wife, my therapist have both told them it doesn't help. When I am triggered/scared, I have PNES where I can't walk. Like at all. I will fall and hurt myself. (I also have POTS).

So I go to the hospital got some unrelated reason and they decide that I'm suicidal because I have a history as a kid and I have passive suicidal ideation controlled by a therapist (my exact words). They keep me for 2 days at one facility no AMA (barely feed me anything I'll actually eat. I'm a vegan), only at certain times was I allowed to to have any comfort items (my fuzzy blanket, was brand new, my phone, etc), they make up lies and decide my health even when I am honest (lmao they literally wrote in my medical record that i threw up on purpose, but they focus on the fact that I use marijuana for pain. Even though I have my medical card.) then tell me I'll be moved upstairs to the psych unit to "finish my psych hold, " where my wife will be allowed to visit me for one hour two times per week. So I'm annoyed but whatever. I know the plan. They tell me they're going to move me at midnight; plenty of time for my wife to get back from work. Nope, they suddenly tell me at 9:30pm the ambulance is on its way to take me to the new hospital. I start freaking out but am doing my best to not do things that will make me stay longer. I make them wait for my wife to say goodbye and deny all my sleep meds and request an Ativan so that I do not have a major meltdown at the new hospital. The entire time, I am shaking nonstop. I am barely aware of my surroundings. I am sweating like crazy and the EMT is very concerned. I ask to leave but am denied.

We finally get to the hospital (10:30pm) and they hand me paperwork to sign in and tell me they will not engage with me unless I sign. I ask if that means I can leave. She says no. I am forced to sign the paperwork voluntarily admitting myself despite actively voicing concerns. (1:30am)

The nurse is nice enough but she is distracted because another man is actively detoxing. She asks about trauma history and because I am exhausted and hope it helps, I tell her about my messed up childhood and my story. She validates me and leaves due to another patient (3:00am) tells me she has to take the fuzzy blanket for now but I should be able to get it back. Another lady comes in to take the fuzzy blanket. I am having a meltdown and shaking so badly I can't stand. She tells me to hand it to her. I gently toss it to her because I can't move. She yells at me. I tell her I'm having a seizure andcan'twalk. She says "no you're not" I repeated that I needed a wheelchair. She checked with the nurse and came back with a wheelchair. (4:30am)

Ended up on the psychosis unit because I told my doctor I was seeing color swirls that weren't there. (Kaleidoscope vision before migraine) The nurses on the unit laugh in my face when I ask about the fuzzy blanket. (6am) The bed was uncomfortable and I had no privacy. At this point, I'd been awake 24 hours so I slept. I got in trouble for sleeping 🥴

The worst part and the reason for this story there was this male patient that arrived on like my second or third day. He just walked into my room when I was laying down reading and stared at me for a while. I screamed at him to get tfo of my room. My roommate heard me yelling and came to help. He finally left but muttered something along the lines of, "I can do whatever the f--- I want. It's my f---ing room." This alarmed me so I alerted staff. They rolled their eyes and said, "That's just Billy. He doesn't mean any harm."

The next day, I am in the common room talking to someone, Billy comes up to me multiple times after I tell him to please leave me alone. He writes down his phone number on a piece of paper and tries to give it to me multiple times after he sees me accept my roommate's information. It happens in groups. Staff does nothing. It's not just me he's bothering but he's clearly targeting and following me. Other people notice and report it to staff. He did this for a few more days before I finally snapped. I yelled. I yelled really loudly to get the f--- away from me. I said it multiple times (I wanna say like 10) and staff did nothing before my roommate (again) told them I was yelling and to get him away from me. They gave Billy a shot for that.

That night I couldn't sleep. I was rolling through the hall with my wheelchair around 3am and heard the sound of a male masturbating. I rolled myself up to the counter wanting pain meds because my entire body was in pain and Billy's roommate Lamar was up at the counter asking to use the bathroom because his roommate was masturbating in theirs. (Ew).

The next day was the night before I found out I was leaving. I spent the day talking to group members that I liked and exchanging contact information and coloring. He again tried to offer me his information but I stayed with an easy way out or a barrier between him and I. Billy went out for a cigarette break with the rest of the group around 6pm. I sat inside with Aqua. We noticed that there was some commotion outside. Later, we learned from another group member, Levi, that Billy had gotten close to a dissociative girl, unzipped her jacket, and grabbed her breasts. She tried to push him off of her but didn't have much success. Lamar saw this and punched him off of her. Staff shoved Billy back inside.

Okay for this next part: there were a few people who knew I could walk but most of the group members had no idea. I had a fall risk bracelet (I am). So I'm sitting in the corner with Aqua also blocked in. Billy comes charging in and beeline directly for me. I have had it at this point. I have told him and told him. I scream louder than I have screamed at this facility to get the f--- away from me. This does not work. I get louder and louder until I am filled with adrenaline and no longer give a shit about whether I fall on my face (but am pretty confident I won't). I stand and take a step forward and shout so loud that the smokers could hear me through the glass outside. Staff comes running. Billy is looking shocked and the only thing that comes out of his mouth is, "Hallelujah. It's a miracle. You can stand." I am seething and am ready to tear this man apart just as staff arrives to take him away. I sit down in my wheelchair and stare at Aqua, slow blinking, aghast at what just happened.

#queer cripple #angry cripple #cripple punk #stalker #hallelujah #funny story #mentally ill #mental disorder #mental illness #tw ptsd #tw stalking #crip punk #physically disabled #disabled #invisible illness #invisible disability #ehlers danlos problems #ehlers danlos #ehlers danlos zebra #ehlers danlos syndrome #hypermobile ehlers danlos #fibro #fnd #functional neurological disorder #psychogenic non epileptic seizures #pnes #potsie #ambulatory wheelchair user #mental health awareness #involuntary hospitalization

[spookietrex]

getting disabled over a period of time is so weird, because sometimes i’ll just see something, let’s say about running, and think “i should do that!” and then i slowly realise that i can’t run anymore. i can barely even walk. it’s weird because there wasn’t one event that happened that made me like it. there wasn’t a day where i woke up and couldn’t run anymore. it was slow and gradual. and sometimes i realise how much ive lost that i didn’t even realise because it all happened so gradually. sometimes it feels like yesterday i could run and today i can’t, and sometimes it feels like forever ago that i could.

[spookietrex]

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[spookietrex]

I'm so tired and tired and tired and tired and tired.

Of the pain

Of the subluxations

Of the unsolicited questions

Of the medications

Of being disabled

[spookietrex]

What did you do today, Spookie?

Oh nothing, just cursed the makers of Perler beads for throwing some of their products into a plastic baggie.

There are 4,000 beads in this picture.

I bought a bunch of new beads for crafting (I made sure most(??) came with the trays as I know myself better than that and have to have my things organized or it can lead to meltdowns. It came in 2 bags full of assorted beads and y'all I nearly cried. Thankfully after 3 hours, my wife and I were able to finish sorting them.

My glow in the dark beads and all my new colors have arrived.

#i spent hours on this #this is after i had already spent an hour on it yesterday #perler beads #autism sorting #for sorting purposes #i must sort these or my brain will scream #autistic and proud #autistic #actually autistic #autistic adult #autistic things #just autism things #just autistic things #special interest #sortie #actually ocd #OCD #let the crafting begin #perler craft #perler bead #messy layouts #mess #ahhhhhhh

[spookietrex]

i feel like it is important to remind people that FTX nonbinary people in general do not actually get their identities respected. they also get told they are either quirky women or binary trans men in denial. like being the most visible type of nonbinary person involves being a frequent target for exorsexist, misogynistic transphobia.

none of this is being said to take away from the bigotry towards MTX nonbinary people (altho it should be mentioned that both face similar issues; there are people assigned female who get kicked out of queer spaces for being too male; there are people assigned male whose identities are reduced down to "quirky woman," drawing this binary while somewhat useful is itself sloppy and leaves out a lot nuance esp. wrt to intersex people) but given the whole "theyfab" shit some of y'all need to be reminded. the last US trans survey found that FTX nonbinary people had the highest lifetime rate of sexual assault (58%) and being denied hormone coverage (36%). being nonbinary & assigned female does not grant anyone a uniquely privileged place in the patriarchy even amongst trans people. stop trying to find a group of trans people its acceptable to mock and label privileged invaders

[spookietrex]

Happy pride month wishing everyone a very don’t forget about disabled queers