Coping With Myasthenia Gravis

I was observed for MG when I was pregnant with my second child and then officially tested a couple of months later to confirm the diagnosis. That was four years ago and it is still steadily progressing. I am on mestinon and cellcept, which helps me get through the day. my doses are upped every visit to the doctor though. i have felt unworthy sometimes to use the handicap parking. but it helps.

the biggest challenge has been raising two kids-4 and 6-for i would like to be able to play and interact with them more and not lie on the couch while my husband makes dinner and gives them their baths. as a result of the mg though, i do pay attention more to simple pleasures and notice more than i would if i was always able to be on the go, and in many ways, has been good for our marriage as well. it is a challenge and i dont see an end in sight but am learning to cope, as well as my family. i refuse to let it keep me down for as long as possible…..

one thing that has helped in multiple to get outside and do something my husband and kids is buy a tandem. so whenever i am too fatigued, my husband does all the pedaling. that way we are still able to take family bike rides and picnics etc……my pedaling never lasts long, but it is great to still participate.