#pnes

[daddyducks]

Shoutout to people with Functional Neurological Disorder

Shoutout to people with functional tics

Shoutout to people who have dystonia

Shoutout to people with Psychogenic non-epileptic seizures

Shoutout to people with paralysis and or weakness

Shoutout to people with tremors

Shoutout to people who shut down/unresponsive episodes

Shoutout to people who have walking difficulties

Shoutout to people who have numbness

Shoutout to people who have speech problems

Shoutout to people with vision problems

Shoutout to people with hearing problems

Shoutout to people with memory loss

Shoutout to everyone with FND

#fnd #functional neurological disorder #fnd awareness #functional tics #pnes #psychogenic non epileptic seizures #tics mention #tics #paralysis

[tallymarksystem]

"you can't have all of these disorders at the same time you have to be lying" if I could have less I would!!!

#nobody wants this many problems #DID #PTSD #OCD #ASD #VCD #VS #MDD #GAD #PNES #PMDD #PD-NOS #I'm diagnosed or medically recognized with ALL of these

[softmushroomboy]

HELP FUND A DISABLED, TRANS SYSTEM’S SERVICE DOG TRAINING!!

Currently: $2010/2590

our next periodic goal of $2590 is due by August 4th!

If we get $25/day we will be able to reach this goal in time!

This will help us pay for 1 package of 10 school days (this will last us 10 weeks now since Dallas goes 1x week) that is $810, that we have been invoiced and are hoping to pay by august 8th AND a private lesson with our trainers that is $200!

Thank you so much for your continued support. You have no idea how thankful we are to be able to continue Dallas' Service Dog training to be Bryan's service dog. She is his lifeline!

1 package 10 school days = $810 (lasts 10 weeks, we pay at the 5 week mark instead of right when invoiced to help raise more funds in time)

1 private lesson a month = $200

#queer #ptsd #actually agoraphobic #did system #ftm #pnes #actually bipolar #did #disability #disabled #chronic illness #spoonie #actually plural #actually dissociative #actually neurodivergent #adhd #audhd #actually autistic #pots syndrome #service dog #autism #mutual aid #dissociative system #plural system #plural community #potsie #potsawareness

[kesterite]

informational comic abt my main disability, PNES! I've found that little to no one I talk to knows abt non epileptic seizures, so I brought together some information that I would've really liked to see before I was diagnosed.

IMPORTANT EDITS: - conversion disorder is now known as functional neurological disorder and my comparison was oversimplification. FND is very real, and has its own unique struggles. PNES is closely linked to it in awareness and communities. - not all PNES episodes are caused by emotional stress. we still don’t know exactly why that is for each person. - the cause is HEAVILY debated. I just chose the prevailing theory at the time of writing the comic that seems to make the most sense.

#my art #disabled artists #seizure awareness #non epileptic seizures #pnes #disability

[neuroticboyfriend]

guess i learned the hard way that repressing my plurality for literal years can end up causing PNES. so here's your warning not to repress dissociative disorders. or plurality in general since I'm not saying this can't happen to non-dissociative systems.

#julian rants #plurality #pnes #dissociative attacks #dissociative #dissociative system #cdd #complex dissociative disorder #dissociative identity disorder #osdd #didosdd #non epileptic seizures #actually dissociative #endo safe #pluralgang #plural system #actually plural #plural #dissociation

[heartnosekid]

hey friends, i wanted to share some things that are going on in my life right now. mostly for possible support, since it is really difficult going through this right now and i wonder if any of y’all have been through the same.

in july, i had three psychogenic non epileptic seizures (PNES) which required me to go to the hospital. they were caused by extreme nervous system stress, i.e. ptsd and panic attacks combined with the fact i was trying to self medicate with cbd and delta 8. super scary, never experienced a fear and strangeness like that before.

since then, i have had like. no full seizures but instances where i felt like i did before the onset of having the three in july.

i am now coming off cymbalta, the second SNRI i have had to come off in the last three years. i am experiencing pretty intense withdrawals and i was wondering if anyone else has had experience with cymbalta withdrawal as well and if anyone could tell me what their experience was like.

essentially my withdrawal symptoms are feeling similar to how the onset of the PNE seizures felt, and i am kind of just. i guess super scared. i have a support system IRL, but regardless of that, whenever i have these symptoms, i feel so alone and isolated. not necessarily in a lonely way, but in the way that i feel the extremest thing is going to happen and no one will be able to help me, if you know what i mean.

so yeah. i’m sorry to vent here, health problems have really been kicking my hind-end in recent years and now the seizures and withdrawals on top of it has really made things more complicated. and i wanted to know if anyone else has any similar experiences, because if someone has shared my experience, it will somehow calm me down. i will be responding to all comments left on this post btw.

as always, i love you all. very very much. if i miss any trigger tags on this post, please let me know and i will fix it accordingly.

- ish 💕

#ish talks #mental health #medication tw #withdrawal symptoms #PNES #cymbalta #drug ment tw #health problems

[v-tired-queer]

Y'all ever go awhile without having a seizure which make you pretty proud of yourself and then suddenly you get this feeling and you're like . . . oh no

#i am feeling oh no in this chillies tonight #i'm not actually in chillies #and it's not night #but i am eating chillie and it's mid afternoon so #pnes #psychogenic non epileptic seizures #non epileptic seizures #seizures #seizure disorder #chronic disorder #disability #chronic disability

[wheelqueer]

able bodied people shut the fuck up challenge (impossible)

#disability #disabled #chronic fatigue #chronic illness #chronic pain #autoimmune #fnd #functional neurological disorder #pnes #seizures #gerd #celiac disease #paralysis

[sophieinwonderland]

u have a v distinct way of doing things and i am v aware of it so i play by ur methods. i will take this excessively diplomatically so no one can possibly misconstrue my words

i made the original post ab this whole thing. in spite of having been labeled as anti endo (and a singlet for some reason) i’m not rly. i have been involved in the plural community long before my DID dx and my last bf was a veritbonder. i have seen the endo community from the inside and don’t have issues w it.

my problem is the disingenuous nature of many syscoursers, and you are not excluded from this. i could do the same thing as you have done and explain why i think PNES should just be called regular seizures and they’re exactly the same now. there are many sources where they have been called seizures for years and years. but language changes, and i know you know this. it is one of your whole arguments as to why you are for the use of tulpa. to you, that word means something different than its origins.

to me, as a bodily semiverbal person, these terms mean something different. these words have evolved within the community that they were applied to. the system community, both endogenic and traumagenic, is dissociated (ha) from the semi/nonverbal community at large. you don’t know how we use these words because you literally do not participate in our community or culture. just like someone who commented on one of your other posts said, this is exactly like when verbal autistics who lose speech insist that saying “go nonverbal” doesn’t hurt nonverbal people.

as i said in my original post, and yet people somehow become unable to read for one sentence, if one headmate fronts for a significant amount of time that you could be considered semiverbal as one body, then you can do that. you are very disingenuous with your “bodily experiences” post, even though i am very sure you understand what people mean by that. my entire body regardless of any headmate fronting will always be semiverbal or nonverbal as my brain damage progresses. i use these words to tell people that as a body i cannot speak how you speak. if i had some headmates that couldn’t talk i would just say that. those specific ones can’t talk. my body is verbal overall.

if you go into our communities, we will hear you say “i am nonverbal” and will assume that your body does not and cannot speak. we will defer to you and seek to uplift your voice as one of the most disabled members of our society. our community is based around intersectionality and understanding that there are people more disabled than you. it is the job of verbal people to listen to me, and it is my job to listen to nonverbal people.

if you use these terms just for yourself. just between you and your therapist. between you and your friends. then no, it doesn’t matter. it was never about that. it is about the community and community implications of people who are objectively less disabled taking a word for people who are more so.

headmates can be people, they can do that, but a single body exists. you can’t just ignore that. i don’t become white when my white headmate fronts. i don’t gain the ability to walk unaided when abled headmates front. i don’t become less disabled in any way. i don’t become verbal.

and if you want to counter with abled systems can have alters that can’t walk, because i know you just want to, we don’t call it paralysis. we call it functional, somatic, or psychogenic paralysis. it works differently in the body just the same. you can’t insert yourself into semi/nonverbal spaces any more than you can insert yourself into a SCI support group.

i could do the same thing as you have done and explain why i think PNES should just be called regular seizures and they’re exactly the same now. there are many sources where they have been called seizures for years and years. but language changes, and i know you know this.

I'm already lost...

Is there some sort of discourse claiming that you can't call psychogenic non-epileptic seizures... seizures?

and if you want to counter with abled systems can have alters that can’t walk, because i know you just want to, we don’t call it paralysis. we call it functional, somatic, or psychogenic paralysis.

Or that psychogenic paralysis isn't a valid type of paralysis?

The cause may be different, but there are a ton of different causes for various conditions.

Someone blinded by an eye disease is blind. Someone blinded by their eyes being physically damaged is blind. Someone who experiences psychogenic blindness is blind.

Likewise, psychogenic paralysis IS paralysis. And a psychogenic non-epileptic seizure IS a seizure. You can add a qualifier to that... but it's not necessary.

if you go into our communities, we will hear you say “i am nonverbal” and will assume that your body does not and cannot speak.

That could be a fair assumption with no context. Although I... frankly doubt this happens often, or is a mistake that lasts long without being corrected.

If someone hears me say "I'm a cis woman" without context, I'm sure they would wrongfully assume I mean that the body is AFAB.

Obviously, it's important to try to mitigate miscommunications like these. But I assume that if you're dealing with a system with nonverbal headmates, you'll realize shortly the error. Unless that nonverbal headmate is the host or is otherwise fronting all or most of the time, in which case... maybe the miscommunication isn't as important as you think it is. 🤷‍♀️

our community is based around intersectionality and understanding that there are people more disabled than you. it is the job of verbal people to listen to me, and it is my job to listen to nonverbal people.

And this, I think is a mistake. At least when taken to the extremes I see here.

First... I'm really not comfortable with the idea of "more disabled" here. Sure, you can kind of apply this in specific contexts to try to say recurrent symptoms aren't as bad because they don't happen as often... but having your legs randomly give out while crossing the street might be more harmful than being a fulltime wheelchair user who wouldn't have been in that situation.

I'm also not comfortable with this thought in this specific case as it suggests that the nonverbal singlet is "more disabled" than the traumagenic DID system with severe memory loss and c-PTSD who has nonverbal headmates, and therefore gets a right to police their terms.

But let's say for the sake of argument this has merit and DID systems with nonverbal headmates are "less disabled" than nonverbal singlets:

Yes, you should absolutely listen to people with disabilities. Especially severe ones. But...

Dysphoric transgender people are technically more disabled (in that specific context) than non-dysphoric ones.

The same logic you're using could just as easily be used to support transmedicalists over non-dysphoric transgender people. Actually, the same logic HAS been used this way. Repeatedly. It's one of the main talking points employed by transmeds to garner sympathy.

There HAS to be more critical thought put into these issues than just "listen to the most disabled people in the room," which in this context really feels more like "accept what the most vocal members of a group say on a given platform without question."

This is also the logic sysmeds use against endogenic and non-disordered systems.

"We're disabled trauma survivors, so therefore you're supposed to listen to us when we claim this other marginalized group of people aren't real and their experiences aren't valid, and they aren't allowed to use terms we claim are ours regardless of whether those terms originally were or not. If you disagree with us then you're ableist."

We cannot afford to normalize this sort of exclusionism and gatekeeping.

#syscourse #neurodivergent #neurodiversity #actually neurodivergent #multiplicity #systems #system #plurality #plural #endogenic system #disability #mental health #nonverbal #sysblr #actually neurodiverse #asd #autism #pnes #psychogenic seizures #actually a system

[finnslay]

I wish I could have a normal life. Fuck you.

#fnd #pnes #Phycogenic non epileptic seizures #functional neurological disorder #seizure #seizure disorder

[sweet-darling06]

#wheelchairusers I want some advice on my situation because I feel like I need a mobility aid but I keep getting denied it because “it will make your FND worse” or “it’s for people who can’t actually walk” I feel like I would use it part time but that option is basically nonexistent. I think I might want to get one once I move out but I hate having to struggle to walk when I feel extremely dizzy, nauseous, fatigued and when there’s tremors in my legs. I feel so tired of pushing for one because I’ve been given the same answer and I’m just tired atp. Feel free to give me advice or really anything. 👍🏽

#actually disabled #functional neurological disorder #pnes #wheelchair #wheelchair user #disabled #chronic fatigue #chronic illness #i hate doctors

[pinxyreaps]

It’s sad how much this happen. Every-time either my blood squirts out my arm or they can’t find it and have to do a sonogram on my arm.

#epileptic problems #disability advocacy #medical stuff #disabilities #seizures #invisible disability #fibro problems #fibro #physical disability #actually disabled #systemic lupus erythematosus #pots #potsie #pnes #if you know you know

[czortofbaldmountain]

A while ago I got a cane and I'm so happy. It's nice to not be stuck at home so much.

Canes are empowering.

Also, I love the one I got. It's black with a skull pattern.

#czortposting #walking canes #cane user #pnes #cripplepunk #cripple punk

[moonbearblue]

Would anyone be interested in me making an info post about non-epileptic psychogenic seizures? They are a pretty common comorbidity in people with DID or OSDD and other dissociative disorders but the communities don’t talk about them a lot.

#did osdd #did system #dissociative identity disorder #actually did #polyfrag system #polyfragmented #endos dni #mental health #osdd 1a #osdd 1b #dissociative amnesia #dissociative alters #complex dissociative disorder #cptsd #complex post traumatic stress disorder #psychogenic seizures #non epileptic seizures #pnes

[shaved-zebra]

🦋 The constant pain. The fatigue. Not being able to do the few things I still enjoy. Doctors sending me away. Probably getting addicted to my meds, but I'm agony without. It's too much. I can't take it. 🦋

#please help #im so tired #sad thoughts #alone with my thoughts #tw depressing stuff #sorry for being depressing #chronic illness #chronic pain #cfs/me #ehlers danlos syndrome #pnes

[heartnosekid]

well, friends. i’m sure a good lot of you have seen this post. i was denied today. i have to contact a lawyer and i don't even know how to begin advocating for myself outside of simply contacting the firm an ex-friend of mine used to obtain disability.

if you would rather not read the whole vent, i completely understand. but if you would still like to provide answers or support to me, here are my main issues.

i need advice from others who have been denied disability and have gone through a lawyer to obtain it. i need advice on what to do about getting started with victim advocacy. that's about it, i reckon. i love you all. my dm's are open. you will be blocked if you clown.

and yes, i realize my stim blog is not the place to talk about this. i understand, but this is my largest audience and i feel i would be a fool to not post this somewhere it may be actually received.

tw for mental health talk / long vent under the cut, particularly of the despairing kind, and also mentions of CSA / CSAM, psychosis, and my general disabilities. if this post needs more trigger tags, please let me know and i'll add them.

my whole life i have been treated as if i am not struggling because i can do the bare minimum to keep myself alive. i can survive, but never thrive, and even surviving now has become difficult. i can't feed myself regularly, my guardians do that for me. i can't stand for longer than a few minutes at a time without extreme duress and pain, which makes cleaning, showering, and going out super difficult and beyond draining. i can understand abstract concepts and certain ideas and am emotionally intelligent, but i struggle heavily with understanding money or how government works, particularly when it comes to laws and loopholes. i don't know when i'm "being had", as it were, and others have pointed this out to me throughout my adulthood. it feels as though this entire disability journey has been me "being had". they gave me something to cling on to, the possibility i may be able to receive real help, and it seems as though they basically knew the whole time they were going to deny me again. for the fourth time. i know that is unrealistic but, it does feel that way.

i wrote several full length books when i was a child / young teenager, and had two published. i won't share the titles because i have outgrown what i wrote and find them childish and frankly embarrassing, but everyone upon learning that i have written and had novels published, immediately jumps to the conclusion that i am some kind of self-sufficient, incredibly intelligent and capable person. i have never once been able to effectively take care of myself. without my guardians, i wouldn't be able to manage money, insurance, bills, cars, groceries, among other things. i don't even halfway understand how insurance on anything even works despite having been shown how it works.

i can see something, be "taught" to the best of someone's ability, and i will still not be able to learn. this has been a constant issue throughout my life, and the american public school system has continually helped these issues perpetuate. all schooling has done is teach me how to parrot back concepts and ideas, remember them for a limited amount of time before losing them to the void, and not how to fundamentally understand and learn them or utilize them in daily life. even higher education was like this, and i was not able to thrive throughout my experience with college despite making mostly okay grades (i cheated and lied a lot, okay. i'm not proud of it but i felt i had to get through or i would be severely punished). i had to a sign an agreement that i personally still do not fully understand to "obtain" my associate's degree, and i do not know why despite the fact it was explained to me, in detail. the information has not registered, and i now no longer have anyone that was involved in said agreement to explain it to me. everyone i say this to is like, "what? that doesn't make any sense." and i'm like. yeah. it doesn't, and i have zero ability to explain it to them in a way that makes sense.

i mention my associate's degree because i am sure in some form or fashion it was used against me in the disability process, since i was "able to complete higher education". also it should be noted i did an early college program. also probably has been used against me. also cheated through most of it.

people have always considered my kind of autism to be hyper competent, since it appeared that way when i was a child, despite showing several signs that i was struggling with a math-centric learning disability, called dyscalculia. i have since deteriorated to the point of barely having the knowledge a young adult should have, about how life works financially and honestly in general.

i have extreme fear about what may happen to me without proper assistance. my guardians will be able to take care of me for some time, but after that? that feels like a black hole to me. it doesn't exist nor will it while i am under-assisted, and this black hole fills me with utter despair. i try not to let it permeate my daily life, so as to not dwell in a future that doesn't exist yet and has the possibility for change. but god. it fills me with literal existential dread, and it is becoming so much more difficult to ignore the older i get.

a lot of factors have been used against me my entire life to deny me assistance, and these reasons being yet another factor has really dredged up a lot of shit from my past.

this is besides the point, but i also learned recently that CSAM was made and distributed of me when i was a child and wow. that has hit me in ways i cannot even describe. part of me is like, why was i not allowed to know after the fact, even when i became an adult? i was directly involved. why did no one tell me my abuser was convicted for counts of spreading CSAM, and that they lied directly to the court system about their inappropriate actions with me? i was disenfranchised in more ways than one by more than one person on allowance of my abuser, and i am just now hearing about it. i don't know how to deal and i don't know how to get started with victim advocacy in my area.

but at the same time, whilst being treated as severely more competent than i am, i have also been infantilized relentlessly, by nearly everyone around me. how does this make any sense. i feel incredibly stupid and uninformed and at the same time privy to things about my disabilities others are not, while not being able to effectively communicate it. i feel i am screaming and begging for help, nearly at my wits end with a lot of things, and all of it is reading as "owie booboo" to anyone who could do anything to help. i feel i am falling through the cracks, and i fear having to crawl back up through them. i fear i won't make the trek. i fear i will lose motivation and let myself rot. it feels like no one in a position of power has taken a true effort to really help me and i cannot help or advocate for myself. i am very scared.

on top of all of that stuff, i am withdrawing pretty heavily from cymbalta, experiencing heightened panic attacks every day, PNES (psychogenic non-epileptic seizures), more episodes of psychosis and hallucinating than i'm used to, all of my mental and physical issues are out of control, and now this disability stuff. i also won't be able to see a psychiatrist for...maybe a week or so more, so no bridge meds till then.

these last couple weeks have just really kicked me down. thank you for reading if you got this far. i appreciate you more than you know and i have no idea where i would be without y'all and this blog. i love you all so very much.

-ish

#ish talks #disability #vent #mental health #CSA mention #CSAM mention #physical disability mention #mental disability mention #psychosis mention #hallucination mention #dyscalculia #neurodivergent #autism #victim advocacy #PNES #ableism