MG story 1: Pay to Play

This month, MG awareness month, I am sharing stories, with their permission of course, from other's who have MG. Myasthenia Gravis is called the snowflake disease because we are all so different. You really can't compare one MG patient to the next, or one hour to the next. I hope this gives you more insight into the life of someone living with MG. I hope this gets MG awareness out there, because we NEED awareness. Thank you for reading, thank you for sharing.

Thank you to the person who contributed this story.

"MG is a roller coaster. You can feel fine one moment and, SNAP, you are in trouble; you can be in trouble and, SNAP, you are fine. The chaotic nature of the disease is probably what is most difficult to live with. You feel fine and you commit yourself to something. Then you crash and can't keep the commitment. You feel terrible and decline an invitation, and then when the time arrives you feel find.

Another problem is that people judge you by what they see. So if they see you on a Tuesday at 2:30 pm, they will tell people you are doing well. The reality is that you were, but it is now 2:45 pm and you are struggling to walk or breathe. Or they see you at 4:45 pm on a Thursday and you are in very bad shape. They tell people you are not doing well at all, so someone checks in on you at 5:45 pm and you are just fine. I know this must confuse people.

I am almost 18 years into this disease and still don't like it, still haven't fully adjusted to it. This makes me very aware of how tired people who know me must feel. Let us face up to a very real fact: People are very good dealing with a disease where you either get well or you die. Most people don't have the skills to deal with a disease that will not go away, a disease that confounds you and them.

Over the years, I have tried to improve the way I respond to others when they ask me how I am. I still fall into the old 'I'm fine' when I'm not. I still don't know if people want an honest answer or not. I still don't know if the truth will set me free or lock me up. I still don't know if anyone other than someone else dealing with a chronic disease that will not go away will ever understand.

So where am I? I love life, I am a happy person, I struggle with this [darn] disease but try not to let it dictate my life. Am I ever emotionally down because of MG? [Heck] yes. Do I stay down? [Heck] no. I live with the reality that MG affects every decision I make, be it medical or social. My always question: Is this worth being sick tomorrow? So, when you see me out and about, it is because I have decided that the event or you is worth the risk of being ill the next day or so. Pay to Play is a concept I understand.

Finally, I could not live with this disease alone. The small and major things people do for me make all the difference. I will be forever grateful for the gifts others give me of their time, of their ears, of their hearts.

Although this is not the life I wanted, it is the life I have been given. So I say, LIVE IT, LOVE IT[...]Now it is time to find a cure."