New here

glassbottle
glassbottle Community member Posts: 7 Listener
in Start here and say hello!

Hello I'm new here. I got an auto immune condition or got diagnosed 4 years ago. It affected my lungs and pretty much overnight I went from walking, moving, being me to being bed bound, losing my mobility, my speech, my hair, my muscle mass. I was in hospital for 6 months and in icu and when returned home I was given a terminal diagnosis. It's all happened so fast. Three years of searching for a cure of suddenly needing mobility aids and learning to walk again only to lose mobility again and again only to be told you're terminal now from damage to organs. I keep hoping one morning I'll wake up and just feel better. But it never comes. There's no cure for what I have and I'm finding it very hard to cope with losing my body and also my career, friends and life. The daily battles to just try and open a bottle or swallow food well. The constant pain. Being housebound. It's too much.
I saw a link to this forum and joined. I never wanted to say I was disabled mainly through fear or sadness but really need to find support. No one from my old life gets it.

So hello. And thank you for reading. I hope this isn't too imposing a read šŸŒø

Comments

  • Bluebell21
    Bluebell21 Community member Posts: 4,630 Championing

    Hello @glassbottle Welcome to the Community. If you have any questions please ask.

    Thank you for telling us your story. I am sorry you are having such a difficult time. We are here to help and support you where we can. Nobody on the forum will judge you.

    Have a look around and join in when you are ready. You might like to look under Categories where there are lots of topics and information.

    I hope you enjoy your time on the forum. Take care.

  • chiarieds
    chiarieds Community member Posts: 16,661 Championing

    Hi @glassbottle - you're very welcome in this friendly & supportive community. It's very difficult for people to understand what you're going through, but I think that's one thing you'll find here, so I'm pleased that you have joined. Thank you for telling us a little about yourself.

  • NannaKaz
    NannaKaz Community member Posts: 12 Listener

    Hi

    Im new too and yours is the first post I have read šŸ˜ž you really are going through so much. It makes my problems seem insignificant.
    I hope you find some support here, Iā€™m sure there are some lovely members you can talk to.
    we are all in situations where we find ourselves here and in need of support.
    xx

  • glassbottle
    glassbottle Community member Posts: 7 Listener

    Thank you šŸŒ· and you also. Hope you get the support you need. And hello :)

  • Sandy_123
    Sandy_123 Scope Member Posts: 58,999 Championing

    Ho @glassbottle sounds like your going though a very difficult time, I hope the forum fetches you some relief and on line friendships

  • glassbottle
    glassbottle Community member Posts: 7 Listener

    Thank you. šŸ™

  • luvpink
    luvpink Community member Posts: 548 Empowering

    @glassbottle

    So sorry to hear of your health issues.

    A very warm welcome to the community. šŸ’

  • glassbottle
    glassbottle Community member Posts: 7 Listener
    https://forum.scope.org.uk/discussion/comment/935743#Comment_935743

    Thank you šŸŒ·

  • Rosie_Scope
    Rosie_Scope Posts: 4,537 Scope Online Community Coordinator

    Welcome to the community @glassbottle, thanks for sharing your story with us, I hope you're doing as well as possible at the moment. We've got some lovely members, so I hope you'll find it an understanding and supportive place to be šŸ˜Š

    If you have any questions about anything please don't be afraid to ask.

Categories