I don’t think my family really understands, I guess I too am still trying to understand this diagnosis so I will take it one day at a time and try to learn as much as possible. I’m afraid for my future and how this disease will progress but can’t really talk to my family members as I don’t want to worry them. My husband has been supportive but he has his health issues so I try not to burden him with how I’m feeling.
I’m truly thankful for this group.

Mine don't seem to understand it. Even my husband sometimes. Just this morning I was feeling weak/dizzy/unstable--hubby tried to tell me to eat something. That just doesn't work like it does for feeling that way for other reasons. Most people just don't get it & I don't feel like explaining it either...

My wife has been very supportive. Some friends too. Other friends think
looking good must mean I am good.

I hear you my friend. I can be completely exhausted from nothing and my husband will want me to do something for or with him. No!!!! I just want to sleep. Try to have a good day and keep that pretty smile of yours

They really don't understand it. The pain and fatigue is ruining my life