The way I define abnormal/normal activity for myself is task based using conventional´housework´activities –

Can I peel 12 potatoes for the whole family? Or do I get myasthenic weakness in my hands after just trying to peel one? (2010 etc)

Am I able to wash my hair all the way until rinsing without noticing deltoid weakness? Or do I need some help (2010)

Can my trunk muscles handle me standing in a 5min queue at the supermarket? Or do I need to lay on the floor for a few minutes to regain muscle strength?

And many many more examples. Task type is one thing and task load per diem is another! Basically what I am able to fill my day with.

I haven´t quite reached´2008´on the graph but yes, despite recent symptoms (which were not nice - but at least sporadic - longer and longer times between symptoms whatever those may be) I believe the normal energy levels to cope with a similar day in 2008 are back. 2004 would have been better but then I suppose I was much younger and had not gone through a pregnancy then either.

Exercise activity…. for example a gentle water aerobics class with old ladies that even an unfit 45 year old should be able to handle was causing immediate exacerbation in 2010 whereas previously I had been a strong swimmer. That exact same class today is not enough. Neither is a walk down the street and back up again which also used to be a maximum achievement.

It has sure been nice to have used Mestinon when I´ve had symptoms and seen that it has worked. I can go days now without Mestinon and it is very odd for your attention not to be drawn to some weakness or other during the length of a normal day. In fact it is even stranger for it to be drawn to glimpses of previous energy levels rather than examples of weakness.....

In a few months I may look back and see myself as the perfect example of someone who thinks they are on their way to some sort of remission or other and yet they´re not – it´s all just been one more long confusing fluctuation!

Thank you for posing these good thought provoking questions, Alice.


Anacrusis