[tysondouglass]

I've experienced every symptom of mg. I can't talk. I ran today thinking I would be okay. Yeah right.

I can talk, it's very slurred, and I don't dare to eat.

[alice md]

Originally Posted by tysondouglass

I've experienced every symptom of mg. I can't talk. I ran today thinking I would be okay. Yeah right.

I can talk, it's very slurred, and I don't dare to eat.

This is one of the hardest things with this illness. it gives you the illussion that you can do things that in fact you can't.

If you are paralyzed, you know you can't run, and you are not even going to try it.

If you have MG, you know that you can run, but if you do, you may end up in the ICU. It takes an enormous amount of self-discipline not to do what you want or need to do, even though it seems you can.

many tiimes physicians, and those around you are extrermely unhelpful in this. because you don't only have to go against what you want to do, but also against what others think you can easily do, if you only try hard enough.

it's a learning process, and eventually you have to learn what you can', and can't do and when. and also take into account that every now and then you are going to do more then you can and crash, or less then you can and miss something you could have done. it's impossible to always be right.

this is part of living with this illness. and there are unfortunately no short cuts in that.

hope you feel better soon,

alice

[AnnieB3]

Tyson, Ditto on what Alice said. Maybe it'll take you ending up on a vent for a week to stop pushing it. Even with all of the drugs you are on, you can go into a crisis. And you don't want to become a "brittle" MGer who doesn't respond well to treatments anymore.

MG is always best managed common sense and alternating rest with activity. It doesn't matter if you are on only Mestinon or loads of drugs.

Save your energy for what is important to you, for when you really need it. Is that school? Is that socializing? Only you can decide what your goals are and how you can get there.

Your disease isn't some abstract, invisible enemy you are fighting. Your disease is YOU. You have to work WITH it to have your best life. You can't keep challenging it to a "duel" and expect to have one winner and one loser. You're the only one who will lose. It reminds me of someone playing "chicken" or Russian Roulette with themselves.

You've done this long enough now that you know when you need to go in or call your neuro. But you are in charge of where things go more than anyone.

I hope you will take it easy.

Annie

[redtail]

I hear you Tyson.

I've spent the last few days, resting, resting, resting, just so I can drive to see Doctors and other appointments........very frustrating, and I've got stuff to do.....

I am a bit more exhausted than usual, I spent 10 days in hospital, and that really took it out of me.

Its hard still to convice myself that I have to restrict my daily acitivities, especially if I want to do extra stuff....I can't imagine being your age and having to restrict myself, I feel for you, but unfortunatley you have to, its not fair, just a fact of our lives.

Kate