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So many posts on this topic have put “decreased energy level” at the top of the list of issues with MG. I expect we all have good and bad days with MG so we need to figure out which kind of day we are having and adjust. I got physically deconditioned in the ICU during mt “acute myasthenia crisis”. I have had balance problems, needing a walker when tired near the end of my day. One day last week I woke up feeling good and found my balance was super so I thought “wow, something really kicked back in for me”. I was able to walk a mile on a pretty spring day using just a cane. I felt great, hoping I had turned a permanent corner. Next day I almost fell over in the bedroom getting my pants on, staggered all day, ended it exhausted with blurry vision (ptosis gives me different fields of view with left and right eye so my brain gives up trying to reoncile the visual fields so I “see” a blur).
I felt angry because the day before was so good but listening to some favorite music calmed me down and I could be grateful for how I enjoyed the good day.
I reckon our “decreased energy” problems mean we have to learn not to waste what energy we have and to make our good days – or good moments in normal days – count as much positive as we can. If I feel good I now try to do something I can savor and enjoy in the moment but not in a way that risks making me too tired to cope with the rest of that day. A nurse in the ICU told me “you must learn to pace yourself differently” to deal with MG. I now understand what she was saying!
I take 60 mg Mestinon four times a day and Prednisone 20 mg once (reducing I hope to 5 mg longer term), also 50 mg Imuran twice a day and I have IVIG every six weeks. But now I can chew and swallow properly again I think music I enjoy can be as important to my state of mind as these drugs are to my muscles. Music also helps to “drown out” my tinnitus and a symphony or piano recital before bed helps me sleep better. I had bad insomnia before my MG crisis hit but now I am sleeping well everything else is (slowly) improving.
The ICU time taught me to be grateful for many things I took for granted before. I hope you can find how to make your good days carry you forward too as good thoughts once or twice daily can be good medicine!