FND / NES

Summerjune15

FND stands for Functional Neurological Disorder which means there is a problem with the functioning of the brain FND causes disruptions in the signals between the brain and the body meaning the functioning and the signals don’t work in the brain as they are supposed to FND is often associated as a computer software problem not a hardware problem meaning it’s to do with the signals and the functioning of the brain rather than a damage to the brain My FND causes me to have non epileptic seizures (NES) NES and FND are in the same category it’s very complicated to explain but it’s just different terminology one neurologist would say FND and the other would say NES like with my situation one said Functional seizures and the other said non epileptic seizures My FND also causes me to have tics a tic is a repetitive movement or sound that happens suddenly I can not control these movements or sounds when I am having tics I will make noises with my mouth and sudden movements.
My FND is also causing me limb weakness Functional limb weakness is when a leg or an arm doesn’t work properly In FND this happens because of a problem with how the nervous system is functioning I can’t walk without a lot of support this is why I am in a wheelchair as crutches are to dangerous with my seizures. I came on here to write it all down because I am tired of feeling guilty of having this condition and constantly questioning myself I am sick of trying to validate my condition to other ignorant people eg a friend and a family member I have FND that causes me to have NES (non epileptic seizures) END OF STORY.

shannon_164

hey @Summerjune15 🙂

i’m really sorry you’ve been made to feel like you have to constantly explain or justify your condition. you don’t owe anyone an explanation, what you go through is real. it’s frustrating and exhausting when people don’t take the time to understand, but please don’t let their ignorance make you doubt yourself!

you’re dealing with so much already, and you shouldn’t have to carry the weight of other people’s judgments on top of that. i see you and i believe you! you’re doing the best you can, and that’s more than enough.

i hope you’re ok - always here for you

Sian321

Hi @Summerjune15 , thank you so much for this post, and for trusting us with this. We don't take that for granted

I came on here to write it all down because I am tired of feeling guilty of having this condition and constantly questioning myself I am sick of trying to validate my condition to other ignorant people eg a friend and a family member I have FND that causes me to have NES (non epileptic seizures) END OF STORY.

I can imagine it might have taken courage to post this, and at the same time, I really hear you when you say that you're so, so tired of having to feel guilty all the time about your condition, and having to constantly doubt, question, and explain yourself. That sounds exhausting, and frustrating, and like so much extra labour for you to be having to do, and you deserve to be able to articulate your condition in your own words, with full control, and to have the final say.

Feeling guilty for your condition sounds really hard, Summerjune, and I wonder where that guilt comes from and what its like for you?

sinead276

just wanted to say basically what the replies above this one have. i'm so proud of you for being able to talk about the condition - i feel like even i've just learned something new. i can imagine how hard it is when people aren't understanding of your condition and refuse to educate themselves and change their thoughts and behaviour. you deserve to be listened to and understood, without feeling guilty for a condition you don't have say in. you deserve nothing but happiness and being surrounded with positive people who support and uplift you.

we see you, and we hear you and we're always here to support you