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Hi, my name is samm22!

samm22samm22 Member Posts: 3 Listener
Hello everyone  ,I am living with an undiagnosed condition for 24 years  Its a long complex story which I'm sure will unfold over time I suffer chronic pain and passing out .I'm unable to take medication or even eat proper food It 20 years from I had a meal .The worst is this flare up is now 6 years that I both housebound and for a good part of the day bed bound this challenges my mental health  I live with my daughter who has learning disabilities..and have a married daughter and son .I'm lucky I have a fairly supportive  medical team 
So that's the short  version hope it does not put u off lol 

Replies

  • chiariedschiarieds Member Posts: 7,943 Disability Gamechanger
    Hi @samm22 - Welcome to the community. I'm very sorry to read about your struggles, & lack of a diagnosis. It's good that you have a supportive medical team; I'm sure you need them. Don't worry, we're not easily put off!....... many of us have problems, which we chat about, & try & support each other with any difficulties we're facing. Please look around & join in any posts, & do say if you have any questions that some member of the community may be to help you with.
  • samm22samm22 Member Posts: 3 Listener
    Well they have been suggested and possible  diagnosis but it actually started when my organs were all stuck together for no reason. Perfectly healthy before that .
  • Ami2301Ami2301 Member Posts: 7,440 Disability Gamechanger
    Hi @samm22 and welcome to the community! I'm sure many of our community members, including myself, can relate with learning to adapt to change, I.e. becoming housebound etc. We are a supportive community and please let us know if you have any questions :)
    Disability Gamechanger - 2019
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Great to have you with us @samm22. Please feel free to jump in and get involved. You're very welcome here. :smile:
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • samm22samm22 Member Posts: 3 Listener
    Thank you so much Adrian ,bit unsure of myself yet  :)
  • chiariedschiarieds Member Posts: 7,943 Disability Gamechanger
    Hi again @samm22 How are you doing today? I have a genetic disorder that affects my joints, but I didn't realise for a long time, as I just grew up with it, but eventually got a diagnosis. I too have chronic pain, but it must be so difficult for you not being able to take anything for it. Are you able to do anything to help distract you? I read a lot as I find that helps me, & enjoy listening to music or watching films. If you click on the 'All Groups' link at the top right hand side of this page, you will see there's a 'Coffee Lounge' where we talk about hobbies, books, films, etc. & play word games.

  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    That's fine @samm22. If you need any help navigating the community at all, just let us know. :smile:
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @samm22 and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  How are you today?  I'm sorry to hear of your health struggles, but am glad you have a supportive medical team around you.  I too have chronic pain at times, but it must be extremely difficult not being able to take pain relief for it.  I can appreciate how upsetting it can be when you are left housebound because of your health.  You have come to the right place for support and friendship as there are many lovely people on here and I am sure you will make lots of new friends.  Anytime you wish to chat there will always be someone to listen.  I hope you enjoy your time with us anyway and if there is anything we can help you with then please just ask.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • chiariedschiarieds Member Posts: 7,943 Disability Gamechanger
    Hi @samm22 - I was just wondering how you've been? I hope you may have had a little look around the forum & may find it helpful, but you can just chat on this thread if you wish. Looking forward to hearing from you again.
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