Everyone with Myasthenia Gravis has good days and bad days. Today I want to write about how to best deal with each.
Let’s start with the good days. We usually recognize a good day soon after waking in the morning. We feel well-rested. Our symptoms are in check, We feel like we may have a bit more energy than usual. It’s pretty clear that, barring any unforeseen issues, today is going to be a good day.
Here’s the problem. When we have a good day, we often just continue our normal routine. We fail to take advantage of our blessing, and yes, good days are definitely a blessing from God. Instead of spending our time enjoying them, we often fall into one of two traps. We either fear our good day won’t last or we begin worrying about our upcoming bad day, and there will be one.
Let me give you an analogy. Have you ever planned and worked so hard for a major event such as a wedding, a child’s birthday or Christmas, that you failed to enjoy it once it was here? You fretted and toiled so hard that the next thing you knew the event was over and you suddenly discovered you had missed it. Instead of enjoying the celebration along with everyone else, you worried and worked to make sure that everything was perfect. The only one who would have known it wasn’t perfect was you. That’s often what happens to those of us with MG when we have a good day. Instead of celebrating it and doing something special to enjoy it, we waste it away by thinking it has to be perfect or worrying that it won’t last. We have “Good Days”; we will never have “Perfect Days”, so quit worrying that it isn’t “perfect” and enjoy it being “good”.
If you wake up with a good day, then live in the moment and do something about it. Call a friend and go for a walk. Go out for lunch. Do something. That not only helps you celebrate the good day, it keeps your mind from fretting about it not being a perfect day or worrying how long the good day is going to last. Don’t let the good day slip through your fingers without enjoying it. You don’t know how many times I’ve caught myself thinking I wish I had done that yesterday because I was feeling pretty good. Regrets are a terrible substitute for failing to have seized the day.
What about the bad days? Yes, we have them, too. We need to use a different method, however, when dealing with bad days. Instead of living in the moment, we need to live for tomorrow. I may be struggling today, but tomorrow is going to be awesome. Tomorrow gives us hope and allows us to forget about today.
The songwriters Martin Chernin and Charles Strouse say it better than I ever could in their song “Tomorrow” from the musical “Annie”.
The sun’ll come out
Tomorrow
Bet your bottom dollar
That tomorrow, there’ll be sun.
Just thinkin’ about
Tomorrow
Clears away the cobwebs
And the sorrow, ‘til there’s none.
When I’m stuck with a day
That’s gray and lonely
I just stick out my chin
And grin and say, oh.
The sun’ll come out
Tomorrow
So ya gotta hang on
‘Til tomorrow, come what may.
Tomorrow, tomorrow
I love ya, tomorrow
You’re always a day away
Tomorrow, tomorrow
I love ya, tomorrow
You’re always a day away.
Make the most of your good days and enjoy them. When a bad day comes, let the words of this song play over and over again in your head. After all, tomorrow’s just a day away.