Over on the "neuro visit (Imuran dose update)" thread, we're having a really productive (for me, anyway!) discussion about how to manage this disease--not the medical treatment side of management, but the general attitude part of the picture. Alice suggests this rule of thumb: "do a little less than you can."

The idea is that this general tactic can lead to a less unstable disease, with fewer and less extreme ups and downs. So although you may be doing less in any particular case, you'll do more in the long run.

I am making a new thread for this idea so that people who are interested in a general "how to live with MG" discussion will see it, because I think it's extremely important. Again, this is a rule of thumb, which means it's not an unbreakable law that must be followed without exception in all circumstances; but it's a good way to live in general, unless a situation arises that trumps it. Something to think about. Thanks again, Alice.

Abby

Alice is a sweetheart and glad she is back.
Mike

I think what Alice said was brilliant. It's not a fun thing to live that way but it actually does help to "maintain an even (MG) strain." I can't even remember what movie that's from.

You're right, it's a very important thing to think about. My MG is much happier if I maintain a coolish environment. Just like Goldilocks, not too hot and not too cold.

This year, I took a fresh look at my MG and life. I can't do other drugs and have to be creative about all of this because my MG was not recovering like it used to. I almost never watch TV now, since there are so many "threatening" aspects to every single show or movie. I get my news via the Internet, so I can pick and choose what trauma I want to know about! Though subtle, that can affect the immune system. I stay away from UV lights, which can cause cancer.

I'm meditating more again. I'm doing what I LOVE as much as I can. I see laughter as a prescription. I use a grocery delivery service if I need to. I eat smaller meals throughout the day so my metabolism isn't overtaxed.

I could moan on and on but you get the drift. So many times, women put others first. Well, I'm not doing that anymore. The only way I can do what I want in life is to do everything to keep MG behaving itself. That's not always possible because it still surprises me.

What do you do to manage MG? It's really a full-time job!

Annie

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 can´t.

I read a book called Mindsight by Daniel Siegel – one bit that relates here for me is being kind to yourself. I´m really good at that during flare ups - that´s 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 it´s 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 ´The effectiveness of brain rewiring during fluctuating diseases´
Well actually - I think I just started it! …….

Thanks!

What a fascinating way of describing this "roller coaster disease".

You are right-there are the "crazy" fluctuations of this illness, there are the medications and there is how much we do.

All this together creates the balance of what life with MG is.

And like Annie says it is a full time job and hard to do on your own.

But, it does make life easier if we manage to achieve at least some stability.

The consistency is by changing the resolution and looking at larger time scales.

You may not be able to do much today, but if you add today and tomorrow it will be OK. And over a week or a month you will almost always have a reasonable amount of productive moments.

So there are certain things you have to do each day (those are the basics), certain things you have to do each week and certain things you have to do each month.

This gives you a lot of flexibility, even in an inflexible world.

It all boils down to "need" vs. "want".

I *need* to breathe. I *need* to eat. I *need* to sleep. I *need* to spend time with the people I love.

Everything else - and I mean EVERYTHING else - is just a matter of wanting, and we learn to budget our energy accordingly.

Life's too short to worry about cleaning the top of the refrigerator....

Hi Alice…..

Talking about roller coasters……

Funnily enough in my experience it wasn´t until my symptoms had become such a ´roller coaster´ that I came to realize that something was wrong with my body and not my mind!!

The 4 years of more stable and slowly progressive muscle weakness led my doctor into believing I was obviously on a psychosomatic downhill slide. I followed suit in this belief! And was then left to my own devices for far too long.

Ironically, it wasn´t until the myasthenic weakness had changed into a more manic seismic pattern that I realized it actually had nothing to do with a psychiatric illness!!!!

The more I experienced the fluctuations the more I realized that glimpses of my original muscle strength were visible and accessible, and that is what inspired me to fight and to be heard. So in a way that ´roller coaster´ was my saving grace.

Annie - on top of a fulltime business - it´s like running your own business to get the diagnosis first!


On a more practical note:

Medication has helped, finding your place in the´myasthenic context ´on this forum has helped, and now a plan of action at my first real neuro appointment will also help.

On another practical note about life, with Teresa: