This is a wonderful thread. I woke up in much more pain than usual, stormy rainy days can do that. I am 51, losing the ability to walk up stairs and having trouble with my arms, getting dressed, etc. I have CMT so it is progressive, and I will be on heavy pain medication for the rest of my life in addition to landing in a wheelchair sometime in the next few years.
I still have children at home, my youngest is 14. I am thankful that my 5 were mostly grown up before my symptoms got really bad. Only one of my three biological children seems to have inherited this disease, and I am thankful for that.

I do get depressed about losing my needlework skills, which were a big part of my life, about losing so many hours in the day to my increased need for rest and sleep, I used to get up before dawn, only needed about six hours, now I seem to need ten or more. Being in constant pain, even ameliorated by the meds, can get to me.

The advice to not think too much about the future is good. We have had to do some planning and renovations to stay in this house, but otherwise it is best to try and live one day at a time, building in as many treats and pleasures as you can. My husband actively tries to plan things for us to look forward to, after years of ignoring ths disease as much as possible. He has finally accepted the reality of all this and has been so much better.

We all need to treat ourselves well, to take care of ourselves and not expect too much.