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Living with functional neurological disorder
Summerjune15
Posts: 150 Helping Hand
I feel like my body has betrayed me It’s unpredictable relentless and overwhelming every day I’m fighting symptoms most people can’t see or don’t believe but they shape every part of my life
I experience seizures both absent ones where everything goes blank and I seem to disappear for a while and terrifying tonic-clonic seizures where loss of consciousness my eyes roll to the back of my head and uncontrollably shaking leaving me exhausted and confused It’s like my brain hits a reset button I feel like I haven’t slept in years I am mentally and physically wiped out paralysis hits without warning one moment I’m walking and the next my legs won’t work or my arm is frozen the terror I felt the first time my legs were paralysed still lingers sometimes it feels like my body just shuts off parts of itself one of my involuntary movements is holding my breath It’s terrifying I gasp and choke for air my body fighting itself sometimes it makes me feel sick or actually be sick It’s not something I can stop or control it just happens over and over leaving me breathless and scared my muscles twist and lock with dystonia causing pain the fatigue is crushing It’s not just tiredness it’s an exhaustion so deep I feel like I’ve been drained from the inside out some days all I want is to curl up in my blankets on the sofa and sleep just to escape how drained and broken I feel dissociation is one of the hardest parts to explain sometimes I feel like I’m not even in my own body like I’ve died and come back as a ghost I look in the mirror and struggle to feel real It’s terrifying a disconnect from reality that’s hard to put into words
my speech breaks down when I need it most I stutter or the words just won’t come out at all my voice betrays me and in those moments tears stream down my face while I’m screaming slightly inside my head there’s pain in my limbs in my muscles in my head in my heart pain that never fully goes away and the constant aching grief of losing the life I used to know and losing myself
FND has taken pieces of me It’s changed how I move speak think and feel I survive it every single day
I experience seizures both absent ones where everything goes blank and I seem to disappear for a while and terrifying tonic-clonic seizures where loss of consciousness my eyes roll to the back of my head and uncontrollably shaking leaving me exhausted and confused It’s like my brain hits a reset button I feel like I haven’t slept in years I am mentally and physically wiped out paralysis hits without warning one moment I’m walking and the next my legs won’t work or my arm is frozen the terror I felt the first time my legs were paralysed still lingers sometimes it feels like my body just shuts off parts of itself one of my involuntary movements is holding my breath It’s terrifying I gasp and choke for air my body fighting itself sometimes it makes me feel sick or actually be sick It’s not something I can stop or control it just happens over and over leaving me breathless and scared my muscles twist and lock with dystonia causing pain the fatigue is crushing It’s not just tiredness it’s an exhaustion so deep I feel like I’ve been drained from the inside out some days all I want is to curl up in my blankets on the sofa and sleep just to escape how drained and broken I feel dissociation is one of the hardest parts to explain sometimes I feel like I’m not even in my own body like I’ve died and come back as a ghost I look in the mirror and struggle to feel real It’s terrifying a disconnect from reality that’s hard to put into words
my speech breaks down when I need it most I stutter or the words just won’t come out at all my voice betrays me and in those moments tears stream down my face while I’m screaming slightly inside my head there’s pain in my limbs in my muscles in my head in my heart pain that never fully goes away and the constant aching grief of losing the life I used to know and losing myself
FND has taken pieces of me It’s changed how I move speak think and feel I survive it every single day
7
Comments
From what you've described, it sounds like you're feeling at war with your body some days, as well as with people around you who don't see or even belief the symptoms you're coping with. It feels like a deep betrayal - like the very body you're living in is going against you.
That sounds extreamly emotionally demanding as well as physically draining too, and I can hear you share just how exhausting and terrifying some of the symptoms you expereince are, esspecially when these things are happening with no warning at all. I can imagine that might leave you feeling helpless sometimes - with so much outside your control and such a feeling of dissconnect from yourself and from reality. I can hear it scares you in many ways. You're being so brave to talk about this.
May I ask, when you speak of grieving the life and person you used to be, what is this grief like for you day-to-day? How have you been able to express or be with those deep feelings of loss or sadness or anger, maybe? You deserve so much to be heard.
I also wanted to share @Invisible_me 's question too. How supported are you feeling right now in the circle of people who know you?
We're right here with you to listen, and you're doing so well to share.
Ans this makes it hard when your parents don't understand! Ut makes it all the more difficult as your also them having to pretend to manage in front of parents. What is it about it thry dont understand?
i don’t even have the words to fully express how much i admire your strength, just reading this made my heart ache for everything you’re carrying! what you’re going through sounds absolutely overwhelming, and i can’t imagine how exhausting it must be to fight a battle that so many people can’t see or don’t understand.
you have every right to grieve the life you had and the version of yourself you feel like you’ve lost. that’s not weakness, it’s human. fnd has taken so much from you, but it hasn’t taken you. you’re still here. still surviving. still showing up. that’s nothing short of incredible.
you deserve to be seen, believed, and supported. every seizure, every moment of paralysis, every bit of dissociation, every breakdown in speech, they don’t make you any less worthy. if anything, they show how resilient and powerful you are just for making it through another day!
i know i can’t fix it, and i can’t fully understand it from the outside, but i’m always here to listen and to believe you - you don’t have to carry this alone, and you don’t have to pretend to be ok when you’re not.
you’re more than what this condition has tried to take from you. you’re still you and that’s someone truly extraordinary
Your disorder is such a scary one to live with, and also not well known.
Anyway I hope you doing okay and I will be here for you if you ever want to talk.