New member, 27 with Nemaline Myopathy — Scope | Disability forum
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New member, 27 with Nemaline Myopathy

Jooles92
Jooles92 Member Posts: 8 Connected
Hi guys, havent looked at any posts yet so not sure what others have written. I'm 27 from Somerset and have Nemaline Myopathy, a rare form of disability. Currently struggling mentally a bit with being able to do less and less. And battling mentally between liking working, but being so physically exhausted and sore. 

Comments

  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @Jooles92 - Welcome to this great community. Thank you for joining & saying about the problems you have. Whilst many of us here have different disabilities, we often share that these may be both physically &/or mentally exhausting, & may often cause pain.
    Have you looked at reasonable adjustments in your workplace so you can be supported in continuing to work? There's some info here on Scope's website: https://www.scope.org.uk/advice-and-support/reasonable-adjustments-at-work/

  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Jooles92 said:
    Hi guys, havent looked at any posts yet so not sure what others have written. I'm 27 from Somerset and have Nemaline Myopathy, a rare form of disability. Currently struggling mentally a bit with being able to do less and less. And battling mentally between liking working, but being so physically exhausted and sore. 

    Hi Jooles, had to google your condition, as I hadn`t heard of it.


    I see it can cause a lot of unpleasant problems for you.

    Have you got much support?
     Has your work helped with adjustments for you?


    Take care.
    Pollsx
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @Jooles92 and a very warm welcome to the community, it is great to have you with us. :)
    Scope

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