Overcame a hurdle
 

My husband and I were asked to play an hour set of our music tonight at a music hall. I haven't played on stage since my MG went generalized. I was really worried whether my voice would let me down. I rested all day. I timed my mestinon so that I took a pill exactly one hour before the set. I sang better than I have in years. Maybe ever! I also was able to play my guitar well. My hands stayed strong. I am so happy!

An hour after the show, I was really fatigued. My ptosis went psycho. My vision was blurred. My voice went out, my ear stopped up, and I had a hard time walking.

But I did it. I sooooooooo don't want to give up singing. Over half of the songs are songs that I wrote. I think that I can do this. At least for now. We were asked to come back in November!

Oh happy day!

Good for you! Congrats

That's great.

The good thing about MG is that you can do something which is very important for you, not on a daily basis but every once in a while.
There is always a price, but some things are worth that price.

As one of my physicians put it-You can't run a marathon every day, but you can every few months.

The danger of this, is if you and other people start to think that if you could do this extra effort, you can repeat it on a daily basis, if you only try hard enough. As long as you do not fall into this trap, you can do it every once in a while during relatively good times.

That´s just AWESOME!!!!! That must have felt so wonderful for you to get your voice, talent and audience all working again!



(Anyone new to MG….if you are going to do hi-energy activities here´s a recipe for you!):

Before the activity:

:Zzzz::Zzzz::Zzzz::Zzzz::Zzzz:

Activity:

:trampoline::trampoline::trampoline::trampoline:

Day after activity:

:Zzzz::Zzzz::Zzzz::Zzzz::Zzzz:

I'm really glad you just said that. All I want to do is get out and run! Hopefully soon... :)

I was so keyed up last night that I didn't sleep at all. Now I am REALLY tired. There was so much I wanted to do today...........

That was figurative. He didn't literally mean running a marathon. He meant doing something which pushes you to the edge of your abilities.

I figured...but I'm still going to take it at face value for now. Lol :)

I am afraid that I have backed off of exercise activities too much. I don't know how much is the right amount. Since it is cooling off, I may walk a bit more.

That's fine, as long as you don't expect too much from yourself :)

I had times when I would dance (better than I ever did before) while lying in bed connected to a non-invasive respirator.

If any of us need respirators, then this is the time of year to plan dances. You could dress as Darth Vader and make a huge hit.
:winky:

Ok, so when am I going to get over all the fun I had Saturday night? :eek::eek:

Southblues,

I suggest that you document your recovery period, so that next time you know what it involves. It may still be worth the price, but you will know what it is.

A few years ago, I presented my work in a conference abroad. I felt that this was a great victory over my illness. But, then it took me about 2 months to recover from this to where I was before.

A few months ago, my abstract was accepted for another conference. After getting over the "high" of having my work recognized and acknowledged I had a serious discussion about it with my neurologist and a few colleagues and decided that I no longer need those victories and it is not worth the price. One of my colleagues was ready to present our work instead, so that I would not have to take this journey.

On the other hand, an important task I want to accomplish at work can make me crash for a few days. So, every now and then I am ready to pay the price. The same applies to family gatherings or meeting with friends.

You can gradually learn the pattern of your illness, and gradually create some order in this disorder. There will still be times in which things will get worse with no obvious reasons, or you can "get away" with overdoing it, but those will happen less often. You can't control your illness, but don't let it control you either.

Hope you feel better soon,

alice

What a victory for you! You deserve a trophy and a standing ovation for your courage as well as for your talent. - Mark

Got a lot on my plate right now, so as I don´t forget - sending you a little good luck charm right now for the NEW concert you have planned for November, Celeste :)

http://www.worldisround.com/articles...4/photo20.html

That should bring some good luck!!