BB, Sorry, I just felt like abbreviating. I've had MG my whole life. Wasn't diagnosed until age 42. Between that, the hellish ordeal with neuros and my insatiable need to learn, I simply know a little more. There are a lot of very knowledgeable people here. Read what Alice wrote to Abby/Stellatum in her latest post.
Pushing MG is not a good idea. I still do it on occasion but not like I did in 2005 when I ended up in a crisis. Alice really describes it well. You don't know what MG will do, it's impossible to completely predict it. There have been times when I hadn't even been doing much and it's gotten worse. So if you can go with the flow of this odd disease, the better off you'll be.
When "normal" people do things, yes, they can get RELATIVELY tired or worn out. They don't, however, have a lack of "muscle gas" getting to their muscles and do not get WEAK. There are 640 skeletal muscles. At any time, one or many more of them can be weak. I think showing a horrific droopy face photo to family or friends is a good way for them to "get it." I have this really awful one of me where I look like a basset hound. Of course, then you have to expect them to "worry" about you all of the time.
Their "normal" is not our "normal" and their "worn out" won't win them a trip in an ambulance to the ER!
Take it easy and take some time to let it all sink in.
Annie
Here's an excerpt from my not as of yet published book about doctoring. I hope this helps explain things to your family.
Quote:
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Have you ever tried taking a road trip with only a gallon of gas in your car? You may make it to where you’re going but you may not make it back home again. That is kind of what a day with MG is like. Acetylcholine is the gas that makes everyone’s muscles work well and stay strong. Most “normal” people have a full tank of muscle gas all day long. If you have MG, however, you don’t really know how much gas you have for any particular day. Or for any of the 640 skeletal muscles. That muscle energy could run out at any time during the day and your muscles won’t “go” any more. The only way to get muscles stronger again is to rest and/or take pretty awful drugs like steroids. Every activity, such as walking, talking, eating, laughing, swallowing, smiling, lifting and breathing, is adversely affected by this lack of muscle fuel. Imagine eating a meal and having to stop halfway through because your swallowing muscles are too weak to work anymore. That’s a glimpse of what life is like with MG.
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