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Hi, my name is Kathleeheat1962!

Hi I'm a bit worried about this ,as I'm new to using this form of communication and I'm new to being disabled,and to make my situation even worse my condition is also new to the medical field!!!! I have hydramyalia.. is there anyone who might have it coz its a lonely condition.??? I guess I might be about to post this to the community 


  • AlexAlex Scope Posts: 1,324 Pioneering
    Hi @Kathleeheat1962

    Welcome to the community. 

    I'm afraid hydramyalia hasn't come up on the community before - could you tell us about it?

    Even so, we're a friendly bunch, and I hope we can support you with any issues you're having.

    Scope has a little guide for people who are new to disability which might be useful: https://www.scope.org.uk/support/disabled-people/becoming-disabled/overview

    Thanks for joining.
  • munchkinmunchkin Member Posts: 4 Listener
    Hi @Kathleeheat1962 x I'm sorry to say I've not heard of your condition before either :(  
    I have been disabled for over 7 years now, I have 4 prolapsed discs in my lumbar region and arthritis in both hips. The discs were operated on 2010 and although it gave me some relief, it also left my left leg virtually useless as the surgeon hit my sciatic nerve with the laser and gave me permanent sciatica. But I could have ended up in a wheelchair so at least I'm grateful that didn't happen. I'm 46, I have 6 children, although I am a single parent now. I don't think my violent abusive husband wanted a disabled wife...but that's another story. 
    If you are new to being disabled, I can only suggest that you check that you are claiming all the benefits you are entitled to. Your local job centre should be able to help with this. 
    And if your condition has meant you need adaptations, even just hand rails, etc, then your local council can help with getting these fitted. They may send an OT (Occupational therapist) to see you first. 
    But you never have to suffer alone. I only found this group today. But there are other places that can offer support and practical help, although maybe someone who has been a member longer might be able to give you more accurate advice than I can. 
    I hope that you can get some help from the group and maybe even find someone who understands your condition x Melanie
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