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Old 06-20-2014, 09:01 AM
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Maggiemayhem Maggiemayhem is offline
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Join Date: Oct 2013
Location: Prescott, Arizona
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Maggiemayhem Maggiemayhem is offline
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Maggiemayhem's Avatar
 
Join Date: Oct 2013
Location: Prescott, Arizona
Posts: 38
10 yr Member
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Quote:
Originally Posted by AnnieB3 View Post
This disease can limit one's life in so many ways. And that's okay when you're alone or with family, who "gets" MG, and who you don't have to go into any explanation of why you're sitting there, unable to do anything, feeling as though you're completely useless and have no value.

I live with my Mom in a basement apartment that my Dad built for his parents. I am grateful I have a place to stay. Grateful for many things. And life is usually "ok" and I manage.

Then there are days such as today, when your area gets 4 inches of rain, on top of the heavy snow this past winter, on top of the 26 inches since April. It's flooding everywhere in MN, and many other states as well. And, joy of joys, we're expecting more rain.

Then when I wake up to my mom wet vacuuming and realize that our entire basement is flooding and that I can't help wet vacuum nonstop, all day and night, now that's a feeling that only you guys can understand: Helplessness. And everything in your life is up on something, or hanging over something to dry, or whatever—and you're trying very hard to make your legs work and not slip on the water everywhere which only makes them weaker—life is simply stupid.

We've had floods before—a bad one in 1987—but this was different. I'm older, sicker, and feeling disabled.

Today I truly hate this disease. Although I'm also grateful, because a friend of ours came over with a super vac and helped us out, even though he might not understand why a perfectly healthy looking woman is sitting down the whole time. And a sister who is helping tomorrow. If it had happened a day later, I would've been all alone to deal (everyone was going out of town).

I knew a day like this would happen when I was helpless, but now that it has, well, I never want to feel this way again. I was calm and cracking jokes, doing what I could to help, but now I'm sitting here, surrounded by little streams of water, and, well, talking to it and saying, "If that's what you need to do, water, then, by all means, knock yourself out."

No, it hasn't talked back, although it is acting up.

What do you guys do, or how do you cope, when life throws you something which you can do nothing about? Have any of you faced being alone during a situation such as this? It's very surreal.


Annie


Annie, I'm watching the news report this morning regarding the terrible flooding in Minnesota. I'm so sorry you've been impacted.
This is my first summer with generalized MG, so I'm experiencing the helpless feeling that comes with total muscle exhausten. I have such empathy, as I know all other MG sufferers do as well.
Close family and friends know and understand what you're going through and will not judge you based on how 'healthy' you look. As for any others, offer to change bodies with them for a week.
I'm finding that, as difficult as it is to accept one's own limitations, it's even more difficult to deal with the reactions of 'others' to a disease they simply cannot understand.
Hang in there girl! When the waters recede, the heat and humidity will attack. For us, it's always something.
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"Thanks for this!" says:
AnnieB3 (06-22-2014), cait24 (06-21-2014)