Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Ups and downs

DebSherwin
DebSherwin
On Tues. I took a chance and went to the studio for a little over an hour. Just to say Hi to my fellow painters and catch up. As much fun as that was, it took me 3 days to recover! Man, was I ever sick, weak, major abdominal cramps and not able to eat.

Today, I woke up feeling like I did before I ever got MG!!.:)) Energy, walking normally and eating!!

That wonderful feeling lasted a good 6 hours! I would do a happy dance, but now a bit tuckered out. Not sick, just did a little too much while I was feeling so good. I imagine I will eventually learn to pace myself. I am sure I will, but in the meantime, I am going to enjoy those 'feel good' moments when they come.

So thumbs up to all of you who have had those happy moments too.

Deb
bweeds
bweeds
Deb,
I think it is almost diagnostic of MG to have weakness relieved by rest and the minute it is relieved plow into something about three times more than you should attempt and pay for it!! But it feels so good while you are able to do it!! Give us an inch . . . And we're scraping linoleum off the pantry floor (at least I was, in the middle of an exacerbation relieved by increased prednisone-- got to watch that prednisone psychosis!). b.
Tim62
Tim62
Glad to read of your happy time. I think it takes a bit of experimenting to learn to pace ourselves. Wishing you plenty of happy times going forward.
vieve
vieve
You're a painter? I went to art school and now have many artistic hobbies, though most of my visual energy is taken up doing my boring and plain product photography every day at work. :) I'm not sure what kind of paint you're using, and I know any kind of exertion can make us feel tired, but I think that exposure to chemicals makes me feel sicker or more tired.

I'm glad you got to feel better for a day! After many days of feeling bad, that first moment of relative normalcy is an amazing feeling.
Bamboolilly
Bamboolilly
As B said, when we feel good w want to go! Pacing ourselves is an acquired art :). Yesterday -I forgot I was sick for about 3 hours. It felt so good. It's cooler in Florida now, so I was outside a lot. Today, no ill affects, but I am tired. By the evening though, I just had to sit and rest. Many of us have tried to up our meds so we could do more...doesn't really work that way. Easy does it, slow but sure wins the race.
Be well,
ray2me
ray2me
The good days are called sparkle days , and we always think they mean we are cured . We all overdo it and crash . I used to have a game called chutes and ladders as a kid . I think of that often with MG . Charlie
Barbel
Barbel
Deb,

Thanks for your post. It's nice to be reminded that we are not alone in our dilemmas. When I have a sparkle day (Saturday ) I feel like a bird set free! Then (Sunday ) I had to rest all day until bedtime. I hope they find a cure soon. :-)
Bamboolilly
Bamboolilly
Love the shutes and ladders analogy. Totally with you there lol.
xmas25
xmas25
you mentioned tummy troubles. my stomach issues went away when i started on mestinon time rel 90mg every 6 hrs with abit of food. i do reg mest on occasion. but it sounds like you had a good time and that was worth it to reconnect with pre mg life. try to remember to sit as much as possible when out. i maybe the only in a chair but it works for me! have a safe week to those who will be hit by polar vortex!
TBreak
TBreak
I hope you have many more good days coming your way. They are priceless. I always think of how it used to be, and when the good days are here, it gives me hope knowing that MG can be beat, some way, some how. Lately, I have had a lot of good days, 21 in a row (not that I am counting), only a very little sign of MG (vision, and hands). I just wish I could divide up the good ones and give one to everybody here that needs one. Tim