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Hi, my name is jollyjoonce!

hi. i dont normally talk to anybody about my disability.

Replies

  • Tammyjane33Tammyjane33 Member Posts: 670 Pioneering
    @jollyjoonce welcome to the online community. I'm Tammy and I'm a community champion and I'm here to support people.
    It's great you're here. Its totally upto you on whether you want to talk about your disability or not. I hope you find the site helpful and hope to speak to you soon 😊
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,449 Disability Gamechanger
    Hi @jollyjoonce and welcome to the community! :)
    Disability Gamechanger - 2019
  • chiariedschiarieds Community Co-Production Group Posts: 8,014 Disability Gamechanger
    Hi @jollyjoonce - Welcome to the community from me too. If you do want to talk about your disability, it's sometimes easier to talk to people you don't know, & you can say as much or as little as you'd like, if you choose to do so.
    We're a friendly bunch; all of us with problems, either ourselves or a relative, & we support each other as much as we can. We're also pretty good at listening.
    If you'd like to tell us about any interests you have, hobbies, or pets, that would be good too.
  • jollyjooncejollyjoonce Member Posts: 2 Listener
    edited November 2019
    I have three beautiful children and a very supportive father to them and to me. Although other people in the family don't seem to get that I am now disabled and unable to do things as I used to do. this frustrates me as I'm trying to deal with being this way myself and don't know how to help them understand it. xx i have fibromyalgia hypermobility manic depression and diabetes. i also have hidden eating disorder. a fat girl with eating disorder. how messed up is that.. lost 6 stone 1 n half years ago but slowly put most back on.. but still addicted to laxatives and make my self sick daily.. xx 
  • chiariedschiarieds Community Co-Production Group Posts: 8,014 Disability Gamechanger
    Hi @jollyjonce - Thank you so much for replying. I can relate to one thing.....the hypermobility, as I have the hypermobile type of Ehlers-Danlos Syndrome. My knee joints in particular often go off in a different direction to that I intended. There are many others here suffering with fibromyalgia, which is often an unwelcome companion of hypermobility. I'm fortunate I don't have it, but do have a lot of pain from neurological problems. Sadly, it's often hard for family & friends to realise that altho' you would like to do some things, such problems means it's often very hard to do so.
    Have you come across the 'Spoon Theory' which may help you, & your relatives? See: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ This has helped many describe to others the enormous problems they face daily.
    Hopefully others will join in & chat. Thank you for sharing. Lovely to 'meet' you.

  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,942

    Scope community team

    Hello @jollyjoonce and welcome! :smile:
    Senior Community Partner
    Scope

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