If you follow me on social media or regular follower of my blog, you would of noticed me saying I am inpatient at a hospital, nothing more, well the truth is I am in rehabilitation programme for functional neurological disorder. Now you thinking what’s that, other names short abbreviations NEAD (non epileptic attack disorder), dissociative seizures. The worst names for it, which I personally hate pseudoseizures which my local hospital called it. Not until went to specialist hospital I got diagnosed with the real term, the one that actually makes sense, doesn’t make you feel like going crazy, that should be sectioned. So many years of being told you crazy, yes I’ve been told that, not being dramatic, and the next one always got from my local hospital just cope with it, no information how to live with it, just deal with it. So many years of missed information, no education about it.
Then a Central London came to my rescue, listened to me. After my old GP’s fighting for me, as they knew I wasn’t crazy, wasn’t making it up, putting it on. It’s unfortunate had to get so bad, to the point impacts my daily life, here I am. So what it is still wondering, tell us Lucy. It’s not caused by epilepsy/tumour/damage to the brain. So for whatever reasons the messages from our brain to our body (vice versa) doesn’t read correctly, miscommunication. Our body goes into panic mode, and our body shuts off. Is the best way I can explain without getting complicated, going all deep. There are many symptoms, long list. So imagine not being able to control your own body even though mentally telling it to stop. Scary right?!
Right now I am currently in a programme to understand my functional neurological symptoms, education education education is the key, working with moods, anxiety, what triggers the attacks/episodes, coping mechanisms for it, educating you about fatigue as that plays huge part too. That’s like brief of it so far. As it’s full on programme, naturally get tired easily so you can only imagine. I’m shocking myself that I’m blogging, so yes there’s your answer why I’m in hospital, not for surgery, or an injury, it’s rehab for my FND.
Hopefully me speaking about it on here, will help people understand more, those who have it, feel like there’s someone else like you out there, as can be lonely isolated world, as it’s not none out there in the public. I will speak about it more.
Ps yes the seizures can look like epilepsy ones, that’s why it can be easily misdiagnosed. And can still do damage like one. I discuss about that in separate post.
Thank you to those who been asking, if you haven’t but wondered above is your answer. Xx