I am looking to socialise more

lozzyholland
lozzyholland Online Community Member Posts: 9 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hello. I am looking to socialise more. I have Joubert syndrome and I struggle with getting out. And I always feel bad to let people down. 

I am married and have 2 children but I find it very hard. I like dancing but my balance means I can’t do it very well. I am learning how to use a sewing machine but I’m struggling. 

Hope to go talk to someone soon

Comments

  • Ami2301
    Ami2301 Online Community Member Posts: 7,877 Championing
    Hi @lozzyholland welcome to the community! Sorry to hear you are struggling, would you like to tell us a bit more about Joubert Syndrome?
  • lozzyholland
    lozzyholland Online Community Member Posts: 9 Listener
    @Ami2301 joubert syndrome is a genetic condition that has many symptoms. I only have a mild case. it affects my balance, coordination, I have learning difficulties, hypotonia, ataxia, muscle twitches and I get facial seizures but its not too bad. i also have bladder and bowel issues and have to self catheterise to urinate. 
  • Ami2301
    Ami2301 Online Community Member Posts: 7,877 Championing
    I have Ataxia too, it can be very challenging to live with!
  • lozzyholland
    lozzyholland Online Community Member Posts: 9 Listener
    yes I know some days are okay and others I do the bare minimum, my children are very good with me. my 7 year old helps walk with me and gets things if I need him to, my 3 year old can be helpful sometimes but she doesn't really understand yet.  it feels awful to think that my children are helping me when it should be the other way round but I try to do what I can and ask my husband to help but he has to go to work, he has just changed his job to a night shift so he can be around during the day a little more
  • Ami2301
    Ami2301 Online Community Member Posts: 7,877 Championing
    I still have days where I feel bad because I can't do anything for myself anymore - physically. It is really tough trying to accept that we need help now. Do you have friends and family who can help out?
  • lozzyholland
    lozzyholland Online Community Member Posts: 9 Listener
    my mum is around but my husbands family fell out with us because we was fostering her other granddaughter but because of my problems worsening we had to stop it cos I was struggling with 3 children all a very young age. but they have been very nasty and not understanding. and said some nasty things about me and my own children. it made me feel awful I loved that little girl but I couldn't do it anymore and my husband didn't want to risk losing all the children.
  • Ami2301
    Ami2301 Online Community Member Posts: 7,877 Championing
    I'm sorry to hear that @lozzyholland :( 
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Welcome to the community @lozzyholland :)
  • thespiceman
    thespiceman Online Community Member Posts: 6,283 Championing

    Hello @lozzyholland  Pleased to meet you welcome.  Thank you for sharing.

    Sorry to hear that you been having some issues and problems. You have come to the right place for support, information and most of all friendship.

    I am one of the team of community champions who guide, advise and help new members who have joined the forum.

    I have the support group of the Joubert Syndrome UK. 

    https://www.joubertsyndrome.org.uk.

    Emailjoubertsyndromeuk@gmail.com.

    I know there is a lot on line about the condition.

    I myself have a genetic condition and know finding support and information about how any condition effects you.

    I hope and do understand. We as a community can be supportive and are ready anytime to listen.

    Have you contacted Genetics UK . Could be some more additional support and guidance.

    Helpline 0800 987 8987.

    Please if we can help with anything please ask.

    We are friendly.

    Pleasure to meet you.

    Take care.

    @thespiceman

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