winic1, I get what you mean by "curl up and die already." MG can be relentless and overwhelming. There are days when it's impossible to do anything. I'm truly sorry you are feeling so down. That's why finding things in your life to treasure and love are so important. It may seem trivial, but even enjoying birds coming to a feeder can brighten one's day.

This is the part of MG that many don't talk about. It isn't like other diseases that are "static." Pushing them doesn't result in needing a ventilator to breathe!

Making life easier with paper plates or whatever else is necessary to create "me" time. So much time is spent just keeping up with daily tasks that we often forget to shore ourselves up with good things or stuff that makes us happy.

Exercise is a double-edged sword. On the one hand, muscle atrophy isn't a good thing. But to keep muscles toned, we have to do something. Exercise does help with overall muscle strength, but it can't be done the way most people do it, nor does it have the same impact.

Where I used to live, I had to walk up stairs a few times a day. It was hard to stand to do dishes. Now that I don't have that issue of stairs, I can stand to do dishes (most of the time). In that particular case, exercising on stairs made my legs worse.

The best exercises for MGers are those such as swimming or using a rower (on the lowest tension). They are "fluid," use more than one muscle at a time, one doesn't have to do it for long, and are aerobic as well.

But everyone is different. There are days when lifting a glass to drink is all one can do to exercise.

There really is no other disease like the NMJ ones. It's beyond difficult to exercise if an MGer is not doing well. There are some people on drugs who can do it more often.

You can only do what you can do. And those physical therapists have no frame of reference. You could always ask them if they could do knee bends while coming out of anesthesia (it has a similar effect on muscles).

Try not to focus on what you can't do. Focus on the fact that you are doing what you can as best as you can. Enjoy what you can. Otherwise, MG wins.


Annie