#functional neurological disorder | Explore Tumblr Posts and Blogs

justsomerandomgay · 1 day

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i remember being ten years old and wishing to die rather than experience the pain i was in yet still my parents and my doctors didn’t believe me. sometimes it just hits me. that wasn’t a normal experience for a ten year old, was it?

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love-me-love-my-weirdness · 4 months

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Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.

Shout out to young disabled people. We exist.

#disability #actually disabled #young disabled #wheelchair user #cane user #chronically ill #chronic illness #chronic pain #chronic fatigue #functional neurological disorder #cripplepunk

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mami-chaos · 2 months

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Normalise mourning the life you may have had before chronic illness took over.

#chronically ill #chronic pain #migraine #disability #disabilties #functional neurological disorder #fibromyalgia #spoonies unite #spoonie strong #spoon theory #chronic fatigue #chronic illness #chronic migraine #spoonie struggle

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daddyducks · 3 months

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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

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this-smile-is-real · 6 months

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11 months ago I was diagnosed with Functional Neurological Disorder and with Fibromyalgia earlier this year.I have also dealt with cPTSD and an eating disorder for the last 20 years.

I have been mostly bed bound for 12 months and have spent 6 months of this year in hospital. I cannot currently walk more than 20 metres without needing a wheelchair to mobilise. I have been unable to drive for the last 12 months due to continued non-epileptic seizures.

I am needing continued help to manage all of my medical bills, specialist appointments, medication, transport etc.

I am attaching a PayPal link if you feel at all inclined to donate to help me manage week to week as the pension I’m on doesn’t even cover basic expenses for each fortnight after rent and each of my medical team appointments.

I would be so grateful for any donations, reblog etc. Thank you in advance x

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thefundisorderdiary · 1 month

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Please like this.

Not for any reason, I just want the serotonin.

#ask #spoonie #functional neurological disorder #putting the fun in functional neurological disorder #chronic illness #disability #disabled #fnd #chronically ill #funny

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valcaira · 6 months

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I am... still not over the fact that one day I woke up with my right side suddenly paralyzed. Without any warning. It's been several weeks now without any improvement. I want to cry. I want to yell and scream. I'm scared. This is fucking terrifying! Who knows what'll happen next? The doctors didn't find an organic cause thus dismissed me so fuck me I guess!

Just like that! One half of my body! Gone! I still can't fucking cope with this. And everyone around me acts like it's not a big deal. Fucking hell.

#vent #cripplepunk #cripple punk #cpunk #paralysis #hemiplegia #paralyzed #actually paralyzed #fnd #functional neurological disorder #neurological disorder #neurological illness #neurological disability #actually disabled #physical disability #physically disabled

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tic-loud-tic-proud · 9 months

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10 Tips for people with klazomania (screaming tics)

1, and this is one that has changed my life: if you have very frequent shouting/screaming tics, DO VOCAL WARMUPS! I used to consistently lose my voice at the end of every day before I started doing this. There are plenty of short and simple warmup tutorials online- find one that works for you!

2, if you live in an apartment building, make sure to tell your neighbors. You don't need to explicitly tell them you have TS, but make sure they know you make loud sounds frequently so they're not concerned. Putting a sign on your door also works. Remember: in the USA it is illegal for landlords to evict someone solely because of a disability.

3, if you're heading off to college and plan on living in a dormitory you might want to request not having a roommate. If you are already diagnosed with a tic disorder, it should be easy to do this through your college's disability services office. If you would like to have a roommate make sure they understand your tics.

4, if you are planning on going out (to a restaurant, theme park, museum, etc.) you might want to call the staff of the location to inform them you have tics a few days before. I usually call ahead to restaurants to let them know about my klazomania and coprolalia tics and I've found that doing so makes it easier for both parties.

5, going off of 4, if you're going to a theme park or large museum and plan to suppress at least part of the time, get a map and mark off secluded places where you can safely let your tics out.

6, if you'd like you can bring a stuffed animal out in public with you: both for emotional support and to muffle the sound of loud tics.

7, if you're a middle or high school student, email your teachers to let them know about your tics. If you have moderate/severe tics it was very important to me that I gave a presentation to each of my classes at the beginning of each semester to teach them about my TS. Another accommodation that I got in high school was being allowed to zoom into my classes instead of attending in person: So on bad tic days I would stay home, and my teachers would broadcast the class over zoom for me.

8, drink lots of water and purchase a humidifier if possible. At the end of a long day drinking fluid and being in a more humid environment will help to soothe your voice. Herbal tea with honey or mild broths can also help soothe your voice!

9, have a good network of friends who understand and support you. This is no easy feat and can take years but it will have a huge impact on your quality of life. Join a support group (IRL or online) to talk to other people with tics who understand what you're going through, and find people who share your hobbies and interests!

10, remember that your tics don't define who you are! It is not your fault that you have tics, and you are not doing them on purpose. Don't feel guilty for something you have no control over. You deserve to live a happy and fulfilling life just like anyone else!

#as usual if you have more tips please add them #tourettes #tourette syndrome #actuallytourettes #tourettic #tic disorder #tics #neurodivergent #tic tips #tourettes support #klazomania #screaming tics #disability #functional neurological disorder #fnd #pans/pandas #pans/pandas/bge

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koko-from-the-future · 7 months

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The death of me isn't the death of us/AKA what not to say to your disabled friend

TDLR - Me being disabled doesn't disable you, and if you think it does THAT is what will be the death of us, not my body.

I'm so tired of telling my friends that I've dislocated a joint after they ask if I'm okay only for them to complain

OMG that's so gross

Does that mean we can't hang out?

I'm so tired of telling my friends that I'm vomiting acid only for them to complain

That sounds disgusting! Remind me never to ask around lunch time if you're okay

OMG I can practically feel it myself

I'm so tired of them asking over and over if it'll shorten my life span or be the thing that kills me.

I'm so tired of them asking if I've found a cure, or if yoga or meditation had helped.

I'm so tired of them acting like me being disabled is death.

I'm so tired of them acting like by association they have one foot in the grave.

#chronically ill #cripplepunk #disabled #disability #fnd #functional neurological disorder #elhers danlos syndrome #cpunk #acid reflux #G.I issues #ibs #spoonie

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wxrmeaterz · 2 months

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random spike of energy

"oh this is amazing! I can do all that cleaning I've been avoiding"

the looming feeling of "oh no I've overdone it and now I have no spoons for a month"

#actually disabled #disabilties #disabled #disability #pots syndrome #fnd #functional neurological disorder #postural orthostatic tachycardia syndrome #cripple punk #crip punk

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tea-and-spoons · 3 months

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Spoonie Life Tip #11

Psychosomatic does NOT mean you're faking

Placebo effect does NOT mean you're faking

"No organic cause" does NOT mean you're faking

Brains are powerful and weird. Your symptoms are real.

#teaandspoons #chronic illness advice #disability #chronic illness #spoonie #chronic pain #chronic fatigue #functional neurological disorder #undiagnosed

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justsomerandomgay · 2 months

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EVERYBODY STOP WHAT YOURE DOING I HAVE THE BEST NEWS! I GOT A WHEELCHAIR!!!!!!!! I CAN LEAVE THE HOUSE ALONE AGAIN, I CAN BE SAFE AND INDEPENDENT AND HAPPY AND SEE MY FRIENDS AND HAVE A LIFE AGAIN!!!!!!

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love-me-love-my-weirdness · 5 months

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Sometimes I don’t think people get that chronic means chronic. It means forever. I’m going to be stuck with this for the rest of my life and I’ve had to learn to make peace with that myself. Telling me ‘hope you get better soon’ and ‘it won’t always be like this’ is pointless because you’ve completely ignored the definition of chronic illness.

#fnd #chronically ill #chronic illness #chronic fatigue #functional neurological disorder #actually disabled #cripplepunk #physically disabled

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seven-oomen · 8 months

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Acceptance feels like giving up.

Let me be clear, it's not.

Feelings aren't always clear, though. And I will admit that even though I've hit my stage of; this is how it is, I have to cope. I still struggle with it internally.

Part of that is because of what other people tell me.

"I hope you recover soon."

"I hope they find a cure for your condition."

"You're too young to be this sick and disabled."

"Of course you can work, you just have to find something that works for you."

"You've been sick for 3 YEARS??? Fuck I would rather die than to have my life be halted like that."

And it sucks. It sucks so fucking much because there is no cure. There is only coping. I've done the therapies, I've fought to stay alive, I've fought to get better. And although things improved, I never got better to a point where I could fully continue my life.

The acceptance of that has set in.

But the mourning for the life I wanted to have hasn't stopped. And with everything I've been (wrongfully) taught, it feels like I've given up.

#actually disabled #actually mentally ill #actually dissociative #actually ptsd #ptsd #chronic pain #chronic fatigue #chronic illness #chronically ill #fibromyalgia #functional neurological disorder #complex pain syndrome #complex trauma #healing journey #ben says stuff

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crippleprophet · 9 months

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do you have any thoughts on functional neurological disorder?

it’s one of the cruelest inventions of modern medicine.

for a bit of context on my positionality i don’t currently have an fnd diagnosis but i am at huge risk of one (my rheumatologist already thinks i have a conversion disorder) & it’s one of the many reasons i’m terrified to pursue a second neurologist after my first one dumped me. fnd is, like, maybe not the pinnacle but definitely a major player in the field of doctors gaslighting us as hard as possible & being furious every time it doesn’t work.

i’m not gonna find these articles bc it gets to a point of self harm for me to (re)read some of this shit but literally doctors are like “the more convinced patients are there’s something wrong the more they’re lying,” “the more symptoms patients have the more likely it is to be fnd and not something really wrong,” etc. again just unfathomably cruel. also the fact that mainstream medicine can unironically write that people with hypermobility are “more likely to have fnd” rather than going huh maybe there’s a neurological component here is just. what the fuck are y’all doing.

a really fun (fucked up) “i told you so” moment with the social construction of the ‘real vs fake’ tics false binary was when doctors literally can’t tell the difference based on their own bullshit criteria.

i highly recommend checking out @fndportal for incredibly insightful thoughts on a lot of these issues. sociological research on post-hysteria diagnoses & the genealogy of hysteria has also been super helpful for me although it’s obviously a very difficult history.

on a peer support level i think disability community is especially vital in the face of these kinds of psychological warfare from doctors. & to anybody who’s been diagnosed with fnd or similar conditions: i believe you. something is really wrong, it is not your fault (& it would be okay, & you’d still deserve effective compassionate care, if it was), you’re not making it up.

obviously i personally want to destroy the whole thing from the ground up, but if i could change one thing about the medical field, it’d be that it needs, desperately & urgently, to create space for not knowing. to say “something is happening here but science hasn’t caught up with it yet.” …unfortunately, to do so would be to destroy medicine from the ground up, because the whole project is predicated on the manufactured authority of knowing our bodies wholly & irrevocably, of rendering our own knowledge irrelevant at best & lies at worst.

also imo cbt, especially for a physical symptom, is evil & in situations where people can ghost their doctors rather than go i wholeheartedly support that.

#fnd #functional neurological disorder #movements of the uncontrollable body #asks #doctor hate blog ✌️🖤#medical gaslighting #post hysteria diagnoses

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thefundisorderdiary · 5 months

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i have a bod it is uncomf

#:(#functional neurological disorder #spoonie #disabled #fnd #chronic illness #disability #actually disabled

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