Nead

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    I'm new here!

    Hi, my name is helenr_88. I'm here because it's so hard going through life with chronic illness and mental health struggles. I have Function Neurological Disorder with seizures. #FND #Nead

    #MightyTogether #BorderlinePersonalityDisorder #Anxiety #Depression #FunctionalMovementDisorder

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    Anyone else here have functional seizures?

    I made a short video. I know others with functional seizures who are embarrassed by them or frightened of them and honestly during yesterday's I was a little frightened because of the position. Maybe the more we hear of other's experiences, the less lonely and scared we will feel. We don't need to be embarrassed of them, they're part of some of us now and we can make sure they don't take over our lives.

    youtu.be/XYIfGeqV74c

    #FunctionalNeurologicalDisorder
    #ChronicPain
    #Nead #FunctionalSeizures

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    Emotions of a #Seizuire

    youtu.be/oS2eOba-wbY

    When I started having seizures at the beginning of 2020 due to #FunctionalNeurologicalDisorder and #Nead I was so worried about not being able to hold my new baby niece because of them. Here are my thoughts on it back then and now and one of my favourite videos of my niece and I.

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    Booking tickets for show when you have a #Disability

    Question! Does anyone with a #Disability or knowledge on the matter, know if there is an easy way to book tickets for gigs and shows?
    I always find it hard. I've never been able to book them online and have ring the box office but recently because of #COVID19 even the box offices have been closed. Sometimes it puts me off because I can't always handle verbal communication and get confused easily.

    It would be handy to have a site to sign up to, give all the correct documentation for proof of disability just once instead of having to do it every single time and then be able to order tickets from one particular site.

    Not sure if something like like already exists or if I'm just being hopeful 🤷🏼‍♀️ and help on this matter would be greatly appreciated!

    #FunctionalNeurologicalDisorder
    #Nead

    9 comments
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    Over a month seizure free

    #SeizureDisorders been seizure free for over a month now feeling proud #FND #Nead

    1 comment
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    Thank you

    I had my first session with my counsellor since receiving my formal diagnosis. She changed our session up a bit, focused on my past and how this might make me feel instead of focusing on present issues. I’ve been really happy with my sessions anyway because I find her technique to work so well, but now am even happier because I feel exploring past trauma is only going to help with these seizures.
    My neurologist has advised I see her every two weeks at least, and my counsellor has agreed to the plan. I’m so happy for the area that I live in and the services and support I can access because of it. This might have been a very different story otherwise.

    Thank you to my neurologist, for investigating thoroughly.

    Thank you to the SHO one night who explained why these episodes might be caused by stress, as no one had bothered to explain before. You probably don’t know it but this decreased my seizures so much.

    Thank you to my counsellor for standing by me and allowing me to explore my past in a safe way.

    I am so grateful and very lucky. #ThankYou #NHS #PNES #Nead #Lucky

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    A new life

    I received my formal diagnosis from my neurologist for my seizures and it just makes everything fall together. I’m so happy I finally have a diagnosis because it feels like I can just move on with things now and focus on getting better.
    Me and my boyfriend attended an awards evening, not too sure if it was because there were lots of people there, I’d had a drink or because of all the excitement, but I ended up having a seizure in front of everyone. My partner (Ben) told me that no one was looking when I was having my fit, and I found out afterwards that quite a lot of people saw but Ben had told them subtly not to make a fuss. I’m happy about this because it enabled me to come out of the seizure quicker, hearing him say that no one was watching me, but now if I have them in the future and he says that am I going to believe him?!

    I really felt like it was going to be a typical night out of having seizures (when I have a drink usually one starts it off and then they just don’t stop. I kept feeling like I was going to have one and really felt quite annoyed by them as I thought I wasn’t going to be able to control them but I used a ‘grounding’ technique and some breathing exercises which I think helped in the long run and stopped drinking for a while. I told myself that ‘I wasn’t going to have any more seizures and that I control them, it’s been proven’ and then I didn’t have any more that night.

    It just goes to show that to a certain extent I can control these fits, it will take a while before I can learn to do that 100% of the time but I’m happy with knowing I’ve done it once! It’ll come eventually, I’m sure :)

    Hope everyone is having a lovely Sunday wherever you are ❤️🙏🏼 #PNES #SeizureDisorder #Nead #PTSD #Stress

    3 comments
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    A diagnosis

    Finally got a letter through which stated my neurologists believes my seizures are dissociative. I knew this, my partner knew this, but it’s strange having it confirmed and I can’t process it properly. I’m hoping that this diagnosis can only help me in the future, and allow me to access the support Now I’m thinking about it, I can see so many things that I do which resembles dissociative behaviour and have only recently understood that this may be the reason why I do not feel emotions like others, for example, whilst others might respond to a relative dying straight away, it might take me days or weeks to process the emotions and feel them. I think this is something I’m going to have to work on.

    On a positive note, this morning I went on a jog in the sun and it felt great. I’ll update once I see my neurologist on the 23rd, and hopefully will have come to terms with a few more things by then. #PNES #Nead #DissociationDisorders #Dissociation #Seizures #Anxiety #Depression #PTSD