Queer, Disabled Librarian

“Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.” Audre Lorde He/Him pronouns please. Queer. Disabled (photo credit: lestrdes and star-plasma) Carrd: https://estravensart.carrd.co/ Find me on Twitter: @EstravenAi

[estravenai]

About

Trans, queer, autistic, physically disabled DID system. 

I have functional neurological disorder with psychogenic non-epileptic seizures caused by childhood and adulthood trauma. I am a powerchair user and have a service dog. 

Our system has around 15 parts. Different parts are interested in topics such as space, horror, spirituality, spying, adaptive movement, Sherlock Holmes stories, Hazbin Hotel, Helluva Boss, and Shadowhunters.

Happily taken :)

I am a librarian at a University and I love my job so much! I do adaptive improve dance with my girlfriend. I write and create art regularly. I love reading and am currently working my way through my girlfriend’s favorite series, The Mortal Instruments. 

[phoenixyfriend]

Challenge for leftists! Criticize Melania Trump without using the following against her:

Eastern European/Slavic

Immigrant

Does not have a Master's degree

Rumored history of sex work

There's nothing shameful about being Eastern European, an immigrant, a sex worker, or not having a graduate degree.

Insult her for her actions, her choices, even her taste in interior design. The hypocrisy of her cyber bullying thing, the plagiarism incident, the Christmas decor that looks unnerving at best.

The blatant hypocrisy of her marriage, if you think she's not under some kind of legal pressure to not divorce. The greed we can read into her staying.

But if I see one more post calling her an "undereducated Eastern European hooker" I'm going to lose my shit.

He education is fine, her background is fine, and sex work is fine.

Criticize her amoral actions, not that!

[chronicillnesshumor-deactivated]

[teathattast]

[komihn]

Launching my first art blogs with a small comic based on the amazing words of Ursula K. Le Guin!

[beemovieerotica]

[satellites-halo]

anyways I'm rlly tired of looking to find more people with FND and seeing our tags flooded with people who are talking about being misdiagnosed with FND and claiming it's not a real disorder. I understand doctors sometimes slap the label on other conditions because they refuse to run tests but FND is a very very real disorder and pretending like it's never a correct diagnosis is incredibly fucking harmful to those of us who struggle immensely with it. Stop posting about your misdiagnosis in "#fnd" and ESPECIALLY stop it in "#fnd awareness", let us have a community

[seasickzig]

Does anyone else feel like no one KNOWS anything (about PNES)?

I originally posted this on reddit but am also posting here.

I hate PNES so bad. No one says the same information about it and everything people say seems contradictory to other research and/or my personal experience.

“You get PNES from PTSD.” But my PTSD was CURED for two years prior to developing PNES.

PNES is called psychogenic, but it’s the only symptom under Functional NEUROLOGICAL Disorder that is called psychogenic.

“PNES can be cured through therapy!” My PNES started after five years of therapy, three different therapists, and many different types of therapy, including talk therapy, CBT, DBT, EMDR, and ART.

“Once you get diagnosed with PNES the seizures should decrease/go away!” But my seizures didn’t change once I received a diagnosis.

“You shouldn’t take medication for PNES because it won’t be affective (for long).” But medication is the only thing that stops my seizure clusters that can last for five hours straight.

“PNES are caused by stress!” But they also happen randomly, and while I’m relaxed, and while I’m happy. And it’s not just emotional stress either, any physical stress can also trigger seizures, so working out, being too warm, being too cold, or being in pain are all triggers too.

This stupid disorder has taken so much from me, my ability to drive, swim, bathe. It’s dangerous for me to be alone. It’s SCARY for me to be alone.

General care directs me to neurology, neurology directs me to psychology, psychology directs me to psychiatry, psychiatry directs me to neurology.

Will I ever get better? If my PNES are not tied to PTSD is there even hope? When PNES is tied to TBI, or autism, or EDS, or POTS, or some other incurable condition, can the PNES be cured? Do I have to live like this forever? With no one knowing anything?

[estravenai]

I really love the idea of crip punk, but I honestly do not feel welcome in crip punk spaces.

Some people in those spaces (not all) are aggressively against any non-pysical disability in the crip punk movement.

But my disability is very physical, but with a completely psychological origin (FND and PNES). So do I fit there? I think some of the more aggressive people might say no.

And either way, the aggressive division between physical and mental disorders makes me very uncomfortable and makes me feel extremely unwelcome. Is that division really that clear? Many mental disorders cause very physical symptoms. And is it really a good idea to split up the disability community? Especially now when we need community so much in this administration.

[asexual-amanita]

MOBILITY AIDS AREN’T BAD FOR FND PATIENTS!

Many FND patients have been told that it is unwise to use mobility aids because it will “encourage the brain to keep producing symptoms.” This is based on the idea of conversion disorder, made by Stinkmund Freud, which has been since been disproved.

Despite this idea, my experience with using mobility aids is much different than what doctors told me it would be. Personally, using mobility aids and supporting myself has actually lessened my symptoms, and, most importantly, the impact they have on my life.

My wheelchair has been the most helpful of all the mobility aids I’ve had. I started using my chair because of my paralysis, but it’s done so much more for me. It’s eliminated the worry of being stuck somewhere and not being able to walk, and prevented me from many falls.

I also used crutches and a cane once upon a time, and they helped me greatly with my needs back then. they provided support and stability, and I found that they helped me get out of flare ups easier and gave me more energy to expend on things I actually wanted to do.

Of course, what’s right for me may not be right for you. Everyone’s FND is different and will react differently to mobility aids. But I don’t want anyone to think that mobility aids are always out of the picture for usage in management of FND.

Lastly, using a mobility aid without any medical guidance can be dangerous. It’s important to get in touch with a professional who can help teach you how to use the aid. If you don’t have access, make sure you do thorough research on the topic from reliable sources.

[the-fox-collective]

FND is full body disorder. Drop attacks, tremours, gait issues, limb weakness, distonia, tics.

FND is full sensory disorder. Numbness in limbs, feel like limb isnt part of body, visual symptoms such as snow or double vision.

Cognitive disorder. Memory issues, dissociation, focus. It affect brain in entirety.

Speech problem. Physical and cognitive.

Seizures. Dissociative, functional, epileptic. Some caused by FND, some comorbids.

It cause many problems, not comprehensive list.

[love-me-love-my-weirdness]

You don’t have to be on the brink of collapse to use your mobility aids.

You don’t need to be limping to use your cane. You don’t need to be staggering to use your crutches. You don’t need to be falling over to use your rollater. You don’t need to be too weak to stand to use your wheelchair.

They’re there to help you and you are never too “strong” to be using something that helps you.

[knitrockbottom]

Can't believe I have a disorder that literally paralyzes me when I take psychic damage. My brain is so dissociation pilled that it disconnects from my body altogether. I get so overwhelmed my legs turn off. Brain starts sending the busy signal through the spinal cord. Think so hard I gotta use the wheelchair.

[asexual-amanita]

“Non-epileptic seizures aren’t real seizures.”

Non-epileptic seizures are seizures in the sense that they generally match the symptoms of epileptic seizures, rather than in the sense that they come from the same neurological problem. In this context the word “seizure” is used to describe purely outward symptoms, rather than the uncontrolled electrical discharge associated with epileptic brain activity. In my experience, my seizures match quite closely with the symptoms of epileptic absence and tonic-clonic seizures. No, it’s not the same as epilepsy, but they’re still seizures in a certain sense of the word.

Also a note that not all non-epileptic seizures are psychogenic or associated with stress or trauma, ok bye.

[faintinggoatsyndrome]

Hi! If you’re flying with a wheelchair anytime soon,

please let me give you some tips from my experience!

1. Before every flight/between every offload & onload: take pictures of your wheelchair from all angles and make sure you can see the airport in the background!

— this is KEY to have evidence in case something gets broken and you have to open a case.

2. Add a luggage tag to your wheelchair so it is identifiable.

3. If you have layovers/if your wheelchair needs to be returned to aircraft door; you have to make it so clear a toddler could understand.

• Example: extra label on your physical wheelchair saying so, ask at gate, ask flight attendant beginning of flight for it to return, remind attendant when landing to call for it to for sure return.

— the orange wheelchair tag has not proven enough for many people, making me lose my wheelchair twice in one trip even though my label was TRIPLE CHECKED at the gates. Write it on a strip of ducttape onto your chair I don’t care; mark it clear and loud.

4. If you have removable foot rests: take👏🏻them👏🏻off👏🏻

— these can get lost. Learned the hard way. Take them onto the plane with you. I’ve never been refused to bring these onto my flight along with carry-on/personal item.

5. Get those get push rim covers!!

You can get them for +- 20 bucks on Aliexpress/Amazon. Your push rims will slide across that storage space and it will get scuffed or even splinter.

BONUS: makes it an identifiable wheelchair! I can always clarify with mine ‘the red wheel one with all the stickers’

Reblog to save someone’s right footrest from ending up in some random Californian airport!

[estravenai]

FND and PNES

I see a lot of people with FND and NEAD (or NES) clarify that not all cases of FND or NES are caused by trauma or stress. That is very true and so important to talk about.

But I just want to say that if your FND and/or PNES are caused by stress or trauma, that doesn't make you any less disabled and it doesn't make your symptoms any less real.

Trauma does unbelievable things to the body and so does stress. Trauma is stored in the body, so it is unsurprising that for some people that is where symptom show up. It doesn't make you any lesser than someone with other causes for their FND or seizures.

[weird-and-unwell]

The rise of doctors describing functional or psychogenic symptoms as "not real" symptoms should genuinely disturb everyone.

It harms those with functional/psychogenic symptoms, because yes, the symptoms are real, regardless of a lack of organic cause. They aren't lying or faking them, they're just not organic in nature.

And even if you don't give a shit about individuals with those types of symptoms (you should), it should still worry you if you're disabled, especially if you're a part of another marginalised group (especially women tbh). You're more likely to be assumed to have functional/psychogenic symptoms, and if doctors believe you do, they won't test for other stuff, or only do very basic tests. Like having any kind of functional/psychogenic diagnosis or suspected diagnosis on your records will hinder any other attempts to seek medical help because everything gets blamed on that, even if (like me!) you have proof that there's other stuff going on (eg positive test results). This means that you can be very definitely physically organically ill, and still be refused tests and treatments based on assumptions.

And then when those symptoms get labelled as "not real"...well, suddenly those with functional/psychogenic problems are basically being called liars, fakers, etc, and can't get the help they need to a, recover/improve, and b, get the support they need whilst/when they have symptoms. (And hey, guess what, if you have neither of those things, you're not gonna get better and may in fact get worse!) And those who've just been assumed to have them are going to get labelled increasingly as liars and fakers as they get increasingly sicker from the "not real" symptoms, risking long term damage from the "not real" symptoms.

(Post inspired by a conference I went to in which an actual doctor stood up in front of hundreds of people and described how it's hard to tell if a teenage girl with anxiety has real stomach pain or not. Because if your stomach hurts from anxiety, it's actually fake, the pain doesn't exist I guess.)