In Wisconsin we wait for warm weather all year. When it comes, we want to be outside enjoying the sun and breezy days, but unfortunately this is the time of year Ken and I find ourselves indoors keeping cool in the air conditioning.
Why? Not by choice that’s for sure! The hot weather of July takes the sap out of Ken. This behavior is typical for an MS patient who generally has trouble with fatigue, but when the heat comes along he or she becomes a puddle. Here’s what I’m talking about.
One day last week, Ken rose feeling energetic. He made himself breakfast, walked into the living room with the aid of his walker, and within a few minutes his eyes glassed over, and he collapsed in his chair. The next thing I knew, he was sound asleep for four hours. He slept so long, I began to worry there was really something more wrong than just being weary.
This is what life is like when you have MS or when you live with someone who does. Everyday is an adventure with this disease. Things can change from good to bad in a matter of minutes or a matter of days. Sometimes things stay status quo for months. The real challenge is to try to be ready for the next change. Through this uncertain journey, Ken and I have become pretty good at waiting for change.
Living with a mystery everyday is not exciting. Sometimes I just want to throw a tantrum and scream, “This isn’t fair!” I want to spend my summers with my love like we used to do. . . enjoying art fairs, family picnics, and an occasional day walking around at the zoo. I’m not asking for much, only a little normalcy in warm weather.