Hi. I don't have any answers, but I wanted to sort of confirm some of the things you say. Adjusting to any chronic illness is difficult, but MG presents special challenges because it fluctuates so much. Mine fluctuates during the day, and I also seem to have flare-ups, which last from several days to several weeks or months. So dealing with MG isn't like, for example, learning to walk in deep snow, or on ice, or something; it's like learning to walk on board a ship. You have to deal with the hourly changes in waves, but also the storms. You don't have to just "adjust" once, and then you're adjusted. You have to keep adjusting continually. It's hard!

I went to see a therapist for a while, one who specializes in helping people adjust to chronic illness. I'm not sure how much it helped me. I did get a better big-picture understanding of my life, which was helpful, though not in the ways I expected. I get the idea from your post that your husband's inability to really grasp what you're going through now is greatly affecting you--maybe a therapist who understands could help you be more confident in your own understanding of your experience.

Here's a practical suggestion: get a rollator (wheeled walker with a seat). They're relatively cheap ($65 on Amazon). They're very light, and you can take yours to the mall or department store. Pushing it is easy, and gives you a little support. But the best part is the seat: you can sit and rest while looking at something on the shelves, or while waiting in line, or if you suddenly get too weak. It folds up easily to fit in your car. I also recommend applying for a handicapped parking placard (or whatever system your state uses). I often have no trouble getting from the car to the store--it's back again that's the problem.

I also have something to say about feeling thankful because it could be worse. That is a good mental habit, as far as it goes. But keep in mind that no matter how bad things are, you can always imagine something worse. If you had a disease that gave you two weeks to live--hey, be grateful! You could have only two days! If you had excruciating pain, well, you could have even more excruciating pain. You see what I mean? Gratitude for the things you have is an emotional response we should try to cultivate within reason--but not to the point of pretending that the suffering we have isn't real. It's real. It's valid. Other people's suffering doesn't diminish yours.

I hope that you can find some support, from a therapist or a friend, or even here (the people here are wonderful! And we actually understand what you're going through!).

Abby