Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Yesterday a friend of mine called to see how I was doing. The last time she saw me I was struggling to just stand up, let alone walk. Before I could even answer she suggested that I START GOING FOR LONG WALKS AND EXERCISING, because that would make me feel better!!!! I was shocked. I know the average person just doesn't get it and that many of you have had to deal with these sort of comments more often than not, so I was wondering, what do you say? How do you deal with it? I don't feel well enough to explain in detail, as my asthma/MG has me short of breath when I talk, and truthfully, I am not convinced most would understand it anyway. I live in a small town and the gossip has already started, so I would like to be truthful, kind and to the point. Any thoughts would be really appreciated. Deb
Sometimes it is best to find one or two good friends who are interested and explain more fully and let them run interference. In a small town, that may be all you need.
You could also use something like: come on over, I'm all geared up and ready to go and we can take that walk, but I have to warn you--all the doors and windows are stuck closed. If you stick around long enough I might be able to get one open a bit for you, but I will have to take rest breaks. It's kind of like that for my muscles when they get the message from the nerves.
The nickel and spoon analogies in the Links Group are better, and can be printed, and you can make your own. But something like this one might get through to a runner. As someone's doctor said we have the "but you don't look sick" disease. I didn't go to a recognition luncheon for the public garden I designed and had helped maintain for years, because I didn't look sick enough :-)
It doesn't help that the weakness is unpredictable and you might be able to punch them in the nose or hit them with your cane, but not run away. Better to do all that virtually. b.