Sorry for the delay in response. we've had lots going on lately. Had my youngest daughter's wedding Sept. 12 and planning that and wedding showers and now a great grandchild due in Dec. In addition to my regular babysitting my 3 yr old granddaughter daily 10 and 1 1hrs a day. Can go on . . as seems when you don't work a "regular" job everyone thinks you have time to do everything else so hubby and I take on a lot!
One of our members, Chad, put it so well! With CMT, most cannot see the struggles we go through, for even the simplest tasks,, because we wear it so well! I've experienced many times people trying to sympathize, rather than empathize!
I personally do not want sympathy but empathy! Empathy is the ability and desire to "understand". Most do not so the defect we've struggled with our whole life, and constantly struggling to adapt as it progresses. But, unless we are in a wheelchair or totally dependant on others to feed, dress, bath and provide mobility, we are considered normal. I'm told so often, "but you look So good". They do not see the pain and fatigued I feel! Only my closest friends and family see that I do not feel well, but keep trying to go on b/c people expect it.
I think this is one of the hardest things, for even our family to see ,we are damaged, and do not function even though our outside package doesn't seem so bad. But, everything is affected by the electrical system (nerves), but unless an electric wire or cord's coating is broken or cracked, they don't think why its not functioning or it glitches b//c inside the coating the tiny little wires broken on inside of the plastic coating.
We have to grow comfortable with ourselves, and do the best we can for the given day. Everyday is a new set of challenges but with encouragement and support, even from total strangers (in our group), we share a common ground to relate! This is why the group, and sharing and discussions can be vital in maintaining this disease and its challenges.
We do understand and with the support we can empower one another to stay strong!