Originally Posted by SharS

Welcome to the forum! I am new also and have found it to be a tremendous help. Everyone is very kind and generous with their support. I've wanted to answer your post for several days but haven't felt strong enough to be posting for a few days.

I couldn't help but smile when I read your post. It was like someone quoting me word for word. I even had to read it to my husband. I was diagnosed 3 years ago and for 3 years have gone back and forth inside my head with the same questions and issues you spoke of - from the way my day starts struggling to be able to dry my hair, pushing through each day at work only to go home and collapse, not able to cook, grocery shop, do laundry, and wondering what my expectations should be, downplaying my symptoms, not wanting to complain, etc and etc.

Well, let me say, don't follow my example for the past 3 years. After 3 years of this, I finally couldn't go on (completely lost my voice, couldn't work, barely able to hold my head up and walk) and have had to go on disability for a while. DON"T try to force yourself to push through. Learn to listen to your body, have periods of rest through the day and don't ignore your symptoms.

My doctor told me to think of it this way:

With MG, you have one dollar to spend each day. You can't save some for the next day and you can't borrow from another day. The dollar has to last you throughout the day. If you spend 75 cents by lunch, then you're not going to make it until the end of the day. He said, spend your dollar wisely throughout the day. If you spend more than the dollar, you're going to have problems. You can't use too much of your muscles one day and expect to use less the next day and be fine.

It's really helped me to look at it this way. Everything we do requires muscle use, whether talking, walking, eating, breathing - on and on. We have to realize that and plan accordingly for the day.

Hope some of this helps you feel validated. It sure has made me feel better and also has helped me to take care of myself to hear everyone else speak about their life with MG and how "common" our un-common illness is for those of us who have MG. It has helped me understand and be able to figure out my expectations of life with MG and be okay with it - at least I know I'm not the only one.

Take care,