Generally I know the following to be true lately:

One day almost nothing can provoke myasthenic weakness
Another day almost everything can provoke myasthenic weakness

In 3 months time the above assumptions may not apply any longer.

Today I climbed 20 stairs and my breathing was not even slightly affected I climbed them all over again to count them and still nothing! I was so happy I sang all the way home in the car. Just a few days earlier I was breathless after climbing a couple of steps and it was impossible to talk whilst walking a short distance.

The tricky part for me is handling fluctuations. Either doing too much during a good period due to an over excitory response and you think you are invincible, or sometimes, not actually being able to start anything at all because the brain is still paused in myasthenic mode even though the muscles are happily waiting for the play button to be pressed. And then there is the transitioning between flare ups and remissions to deal with. One minute you can – the next minute you canīt.

I read a book called Mindsight by Daniel Siegel – one bit that relates here for me is being kind to yourself. Iīm really good at that during flare ups - thatīs the easy part….....I just need more practice during remissions, since leaping up a flight of steps is such a rare occurrence and celebratory event that it feels unnatural and not especially kind to break up the party, so to speak, just when there seems to be a moment that you can actually throw one. But being happy just knowing you can will sometimes have to be good enough.

I think itīs quite fascinating how people with inconsistent physical abilities live out practical expectations/dreams in life which often require a consistent input to be successful – but somehow they find their own and sometimes a very different way to these goals despite all their set backs - - -

I salute them!


My intention is to write and finish my paper īThe effectiveness of brain rewiring during fluctuating diseasesī
Well actually - I think I just started it! …….

Thanks!