Neurological conditions
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I have epilepsy and I'm scared to go out alone

shirley1349shirley1349 Member Posts: 1 Listener
edited July 2018 in Neurological conditions
Hi everyone, new to all this, I have epilepsy, don't get out much as too scared on my own in case something happens :(  feeling cut off. Anyone else out there in my position or similar? 

Replies

  • mossycowmossycow Community champion Posts: 486 Pioneering
    Hiya Shirley,. 
    Sorry I'm not epileptic but couldn't read and not reply. 

    I feel but similar, iusea wheelchair and fear it breaking down. We've just changed plans at start of summer holidays as I Darenth go on the train for a longer journey myself... 

    But I do know what it's like to feel cut off..... Is this a recent position or have you been feeling like this a while? 

    I guess there's several ways to look at this.... Getting enough support with your condition that you feel more confident and have back up plans.. . But Hmmmmm might be hard with epilepsy. 

    What about employing a Pa (I prefer 'personal assistant' than 'carer'....) even if just for a few hours a week? Or friends? Family? Thought I know relying on friends and family is so hard.. 

    I've joined a few local groups. I'm 37 but our local age uk do musical stuff and social stuff and being there makes me feel safer.. 

    Also, if you don't use it already, may I totally recommend social media? I know I know that face to face is best... But we don't have that luxury do we.... Before I got my power chair I was fairly trapped and found social media a godsend. 

    Do you use Facebook? WhatsApp? Twitter? This forum at all? 

    Big hello!! 🌊 👋 You are not alone! There's a whole Scope community here who understand xx

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • justg72justg72 Member Posts: 173 Pioneering
    Hi Shirley
    Hello and welcome to scope.
     I have uncontrolled Temporal Lobe Epilepsy so I understand exactly how you feel. I do not go out alone as I am too scared to do so.
     Is your epilepsy under control?
    I do not know how to advise you on this as I would be a hypocrite because I do not go out alone. It is normal to feel like you are, have you family and friends which can support you when you need to go out?
    Is there an epilepsy group you can join or behaviour therapy group? this may help you achieving this goal.
    I would enquire and see what help is available, you can also contact the epilepsy society or epilepsy action and see if they have any idea's on how to go about going out.
    I hope you get the support you need, if you ever want to talk about it I am here on the Scope site.
    Justg72  

  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @shirley1349, and a warm welcome to the community!

    I'm so sorry to hear you're feeling this way. I'm tagging in @GeoffBosworth19566, @Bellasaurus and @emmalouisetrodd who have all discussed epilepsy on the community in the past, in the hope they can offer some support or practical suggestions.
  • Kimbeau0709Kimbeau0709 Member Posts: 4 Listener
    Hi Shirley
    I have been suffering with Epilepsy for 30+years and I totally understand how you feel. 
    I was 23 at the time out every weekend with friends and enjoying life. After the diagnosis I felt so alone in the world, I lost all my so called friends but I had a great mum and dad who helped me regain my confidence, my sister was also great and helped me gain confidence by asking me to look after her children on my own so she could pop out to the shop. That doesn't sound like much but knowing she felt that confident in me made me feel a lot better about myself
    All your fears are perfectly normal, i promise you that.
    I stopped going out alone too, for exactly the same reasons as you. I also kept the condition a secret from anyone new i met.
    I'm not sure if this will help you, but my mum and dad got  a dog not long before my first fit and I honestly think he helped me cope both indoors and going out. I never felt alone, he was my constant companion. If you can't have a larger pet, a smaller one may help, just something to care for, they also help with stress and anxiety. I found that thinking about the dog, feeding, needing water etc. kept me from worrying about my Epilepsy. Best of all pets love you no matter what and that is a great feeling, they don't care what you look like, if you are ill, they just care about you.
    Telling my, now, best friend that I had Epilepsy was a turning point for me as well, she had grown up with her mum having fits (I didn't know this at the time) so she was not phased by what I said. I remember her saying 'So what? It's not catching and I know what to do so don't worry'. i know not everyone is fortunate to have a best friend like mine but you'll be surprised by the amount of people who aren't phased.
    Remember you are not alone, and you've taken a really big step by joining this forum. I have found that people with disabilities have more empathy to others with disabilities because we understand how hard it can be.
    I agree with @Justg72 you should contact the Epilepsy Society, I did and they were very supportive, they understood my fears and talked them through with me.
    Please let us know how you're doing
    Take Care
    Kimbeau0709
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Thank you for sharing your experiences, @Kimbeau0709!
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