New member, 27 with Nemaline Myopathy

Jooles92

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. 

chiarieds

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

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

Hi @Jooles92 and a very warm welcome to the community, it is great to have you with us.