I go through my life not really taking my health THAT serious. It impacts me daily. http://pearlsanddreams.blogspot.com/2005/02/another-fyi-post.html#comments,and have to pay attention to what I do (although, too often I pay attention AFTER I start to wear down.)
I have become so used to dealing with the major part of these chronic illnesses, and they are in fact, not as bad as they could be, and, not as bad as they have been, that I just tend to go on about my business until I walk smack dab into a wall that makes me stop in my tracks.
Usually that wall is experienced by the necessity of staying in bed, or laying on the couch for the greater part of a few days ...with the allowance of an hour or so at a time of sitting at the computer here and there until double vision takes over, or shortness of breath, or my head won't stay upright.
I don't DARE tell my doctor's I get to that point, because the myasthenia is WAY to stable for me to ever get to that point because of activity level ... infection getting it to that point ... yea, they'd give me that one, but activity? They'd have my head on a platter. The fact that I hit that wall at least once a month? Yikes! I'd never hear the end of it!
This week, I've had a reminder of how serious Myasthenia Gravis can be. I tend to think of it as a seriously impacting my ability to do what I want in life ... and seriously impacting medical procedures ... but serious in the grand scheme of things? Nah!
One of my good friends has a boss who's ex husband has it. He lives here, and had a heart attack a few weeks ago. They thought he went into myasthenic crisis at first. When they realized it was his heart, things got serious ... they started treating his heart, and didn't take Myasthenic precautions. He is not with us anymore.The myasthenia took his life, after 2 weeks in ICU.
Another friends mother in law is in the hospital in myasthenic crisis. She went into crisis 2 days after the gentleman above did. She's been given plasmapherisis, IVIG, and still isn't coming out of it. High dose steriods ... she is still in ICU ... they are having to suction her lungs (ick, been there done that, hopefully never again!) and she cannot open her eyelids.
Another friend has a mother of a boyfriend who's mother has MG and is in crisis in the hospital ..not doing well ... serious condition.
Suddenly ... I'm very aware ... I need to be taking my health more seriously. Is it fair to my family that I hit that wall every month? Is it fair to them that I take the risk of throwing my body into myasthenic crisis so that I can pretend that I can keep up with my healthy friends? When what I want to do with my life can be done without pretending that I'm 'normal' ... do I really have to pretend that I am? Is it really worth the risk? Is it really worth feeling like death warmed over a week out of every month to play 3 weeks out of every month?
Wouldn't it make more sense to balance every day to more fully enjoy every day???
Is taking my medications and going into the doctors for the check ups really all there is to taking care of me ... I think I've seen that as my compliance to my treatment ... now ...after seeing these three other myasthenic situations ... I'm really having to question that. It COULD happen to me ... do I want it to be because I have done something to cause it?