Tyson,

it seems that you and I have the same type of unpredictable, unstable truly "crazy" MG, where you can go from being near normal to near-crisis within minutes, hours and days. many times regardless of what you do.

I can fully understand your confusion. I don't know how familiar you are with "alice in wonderlad", but that has been the way I was feeling ever since I became ill.

I "changed" within days from a fairly normal physician mother and wife, who could get up in the morning, take the car, drive to work, be there as much as was needed, and come back at night etc. take the kids to their after school actrivites, do shopping, prepare dinner, go out with friends, take trips abroad etc. to someone who could not know any longer if something is near of far, heavy or light, and if she could do now what she was able to do five minutes ago. I could be talking to a colleague in the corridor and find myself collapsing in the middle of the sentence, struggling to breath. I could walk to the staff dining room, and not be able to go back. I could be at work in the morning, and in the ICU in the evening of the same day.

like you I was searching for someone to guide me in this "crazy" land I found myself in, and it took me a long time to understand that as confusing as it was, I was the best guide for myself. and many times those that were supposed to guide me, actually took me in very dangerous and useless detours that would lead no-where, and took a long time to get back from.

one of the things that was of tremendous help for me was my respirator. it gave me the true confidence I needed to do what I want, as I was no longer concerned of going into respiratory failure because I did too much.

the other was my wheelchair (as well as other similar aids), that made it possible for me to always get to where I want, even if it was a distance I was not able to walk. after all, no one in his right mind would walk from new york to philadelphia, but would use a device with wheels to get there (called a car), so for me it was the same, just for a shorter distance.

the idea I am trying to get through, is don't give up any of what you want to do, but find the way to do it, without risking yourself or becoming very ill for a long time.

and only you can eventually find what will work for you.

best,

alice