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Old 10-08-2009, 11:43 AM
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alice md alice md is offline
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Join Date: Sep 2009
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15 yr Member
alice md alice md is offline
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alice md's Avatar
 
Join Date: Sep 2009
Posts: 884
15 yr Member
Default predictable unpredictibality.

Quote:
Originally Posted by Maxwell'sMom View Post
I just wanted to pop in for a second and tell you, Myasthenia is like that, it doesn't always give a warning before it attacks.
I once heard an MG expert say, the only thing Predictible about Myasthenia Gravis, is it's unpredictibilty. And boy did he say a mouthful with that one.
Sorry you have Mg, it really does stink living with it.
Love Lizzie
I fully agree with that, but then you can predict that it's going to be unpredictable, can't you? and that, in a way, gives you some control.

I know that what I say may sound a bit ridiculous, but I seriously mean it. I have learned to plan an alternative date, for every important meeting, and let everyone know that I will be there if my illness permits it.

I make commitments only after I have made a clear plan as to what happens if I am not there, and make sure that I am not the only one in charge.

I have two calenders, one with the actual dead-line and one with a much earlier dead-line that I give myself, and I let everyone involved know that if they want things done on time, they have to adhere to my dead-line and not the real one, because if not there is some risk invovled, that I will not be able to do it on that day.

and it works pretty well, most of the time.

(nothing in the word works all the time anyhow).

alice
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