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Old 06-07-2009, 09:58 PM
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erinhermes erinhermes is offline
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Join Date: Jul 2008
Location: San Antonio
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15 yr Member
erinhermes erinhermes is offline
Senior Member
erinhermes's Avatar
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
Heart Hey Becky!

Hi there! Are you sure we aren't related? We sound so much alike! I am the exact same way - know that I am going downhill FAST when I no longer am willing/able to make myself up for my hubby/son, etc.........even brushing my teeth can be too much...hate that feeling!

Now I've just GOT to do is lose weight in a HEALTHY way....no skipping meals, no meal replacements, etc, but I've got 40 lbs to lose - the most I've EVER had to lose in mylife. My neice saw a pic of me a year ago and said "Auntie, you don't look like that anymore - why?" She was not being ugly, she is 7 and curious. I don't think she even remembers how I used to look....*sigh*

You are soooo right about not overdoing it! I have a tendency to to that and then am worn down, though I do know that this year is gonna be FABULOUS! I've even thought about going into nursing or volunteering @ the hosp where they have taken such good care of me. Then I plan on fostering. It feels so good to have energy again! We had a party for my stepdaughter on Friday, right after I left for my LAST IV IG treatment and had my PICC line pulled and then had my neice over Saturday...we has a girls "spa" day.....I was also able to clean my home and spoil my family and dogs! Woo-hoo! Guess what? I still feel GREAT! Maybe remission is right around the corner!

I have missed you!!!!!

Big hugs!
Erin







Quote:
Originally Posted by ras1256 View Post
Hey Xmas,
I've seen a couple of posts where you have mentioned you need help differentiating what you're feeling. I can tell you how this goes for me.
When my MG is starting up, I don't feel like going to work, putting on make up, doing my hair - or even care what clothes I wear. After it's gotten going badly enough that I can't go to work, there are many days I never even get out of pj's, brush my hair or anything but absolutely necessary things (food and toileting!).

When I feel good it's actually difficult to keep me from doing more than I should. It's like when you were sick as a kid - when you felt better you FELT GREAT! It's the same here - the relief from the fatigue and weakness of MG make you feel better than you really are, so you have to actually train yourself not to do as much as you feel like doing.

Being out of shape won't keep you down, once you feel good.

The hardest is the difference between the disease and too much Mestinon. Too much can cause the weakness and fatigue as well. Watch for excessive perspiring, and muscle twitching. For me, my "normal dose" can be too much in the morning, but not enough in the afternoon. It's quite the balancing act, when you start to get better especially. My neuro when I went into remission had a terrible time getting me to stop taking the Mestinon. I was scared to death to go without it, but I actually got better when I stopped (until I came out of remission again anyway).

I hope this helps you. I know it's so confusing and after the struggle to get diagnosed and having people tell you you just need to get up, or need to get back in shape (My doc told me that before I was dx'd), or you're lazy, it's easy to think that's what's going on. Believe me, though, when your MG gets under control - NOTHING will hold you down!
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"Thanks for this!" says:
ras1256 (06-09-2009)