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...
Hello everyone!
There are so many who have worse symptoms than I, but it would be very helpful to get some tips on daily life management. I was diagnosed in late August, so much of this is till new.
I would like to create a little balance in my life. It seems I either accomplish nothing in a day, or get mad and push myself until I drop. I can feel ok, but tired, then suddenly wobble and feel like a limp noodle. (Not to mention sudden Mastinon side effects!) If caught in the wrong location, I can feel panicky to find a place to sit without showing anyone near what is going on. It would be so nice to know before I get to this point! I realize we have to pace ourselves, but i am self employed. My income is dependent upon self motivation and if I do Only what i feel like doing, I am doomed.
I also need to lose weight. Is there a way to exercise with MG? Is this something that has to wait until my meds work better? At least I have less migraines on Mastinon! That's progress!
Suggestions?
There are so many who have worse symptoms than I, but it would be very helpful to get some tips on daily life management. I was diagnosed in late August, so much of this is till new.
I would like to create a little balance in my life. It seems I either accomplish nothing in a day, or get mad and push myself until I drop. I can feel ok, but tired, then suddenly wobble and feel like a limp noodle. (Not to mention sudden Mastinon side effects!) If caught in the wrong location, I can feel panicky to find a place to sit without showing anyone near what is going on. It would be so nice to know before I get to this point! I realize we have to pace ourselves, but i am self employed. My income is dependent upon self motivation and if I do Only what i feel like doing, I am doomed.
I also need to lose weight. Is there a way to exercise with MG? Is this something that has to wait until my meds work better? At least I have less migraines on Mastinon! That's progress!
Suggestions?
Be well,
Thanks again!
Cyndi
I would second the journal idea. I found that incredibly helpful in terms of figuring out a pattern to live by. Obviously, it isn't a perfect system because MG isn't predictable in any way. Patterns do emerge though and as suggested by Barbel you will learn what your most productive times are and your least. Some of our MG patients have told us that they go to bed earlier at night so that they can get up extra early. That way they will have better energy while everything else in the world is still quiet or just getting started. I don't know how well that would work for you and your situation. Given your creativity and the nature of your business I don't know if you work best under pressure or when all is quiet and still. Maybe you can have scheduled (loose) times specific tasks and do the same for rest time. Once you get a little more use to your situation and new schedule with opening the store it will get easier. I promise. I can't tell you how much easier but like Bamboolilly, you have to hold on to the fact that each day you will be able to do a little bit more than the day before.
I hope all of this blabbering helps some. I wish that I had better words of wisdom but it looks like we are all going to have to stick together with this crazy disease.
Please keep us posted though. Anything that you learn about yourself could be helpful to others here. We are all here for you when you need us. Big hugs to you!!
Angie