According to the Office of Women’s Health of the US Department of Health and Human Services the estimates of the number of people affected by Myasthenia Gravis (MG) vary ranging from 5 to 14 people per every 100,000. In other words in a population of one million you can find as few as 50 to as much as 140 people affected by MG.
I’m one of them!
Do you think I’m lucky enough maybe to play lotto and win the jackpot?
You never know, that’s why I’ve decided to play a lottery ticket once in a while, if I was lucky enough to be affected by MG, what are the odds I could also win the lotto?
Ever since I was told I had MG other than reading the booklet my neurologist handed to me I haven’t done much of research. I haven’t even bothered to buy a book (one that would teach me how to deal with the situation), which is my solution for almost everything.
I really haven’t even explained it to my parents, all they know is that I have a disability, but they’re not much into the details. Not because they don’t care, but because they care too much. As long as I “look” fine, they are happy. The days I don’t “look” fine I simply don’t go over to spare them the anguish of having to deal with my illness.
I’ve let things play out.
I’m more than sure that my children have done their fair share of reading, which has made them understand how this “thing” works and offer me the help I’ve needed in the years that have passed ever since.
How do you deal with facing life with a chronic illness?
The answer is simple, living every day as best you can. Knowing that “it can only get better.”
Information is power and certainly helps deal with unknown aspects of any illness, but it’s also like when you read a given side effect of a prescription. Once you know the side effects, your mind can play tricks on you and may feel the symptoms, even if you don’t have them.
I’m not willing to take that risk.
On another side, some people affected by these type of events in their lives become crusaders of the cause and everything they do is related to their new reality. Even though I admire them for that, I just can’t make myself do it. It’s not fair! Why do I have to embrace a reality I don’t like? I will never become a MG advocate, I resist doing anything about it except accepting it in my life.
My acceptance begins and finishes with the fact that my kitchen clock rules my life. Every six hours I have to make sure I don’t forget to take my prescription of Mestinon 180 XL. God bless the scientists who developed this drug, without it I would be as sick as a dog 24/7.
Other than that, what can I say?
Some of us are just darn lucky!