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New member, 27 with Nemaline Myopathy

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
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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/
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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.
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