MS Calls the Shots


This is your body with Multiple Sclerosis.

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.

7 thoughts on “MS Calls the Shots

  1. The heat makes us all cranky and lathargic. An illness on top of it can create pure despondency for all. I was even rude to my sweet daughter last week from lack of sleep. Can’t sleep when I’m too hot. The opposite of Ken. I understand your frustration. Please be as patient with yourself as you would anyone else struggling with that situation. You are allowed to be upset at the struggles you both face.

    • Sometimes we all need “permission” to feel the way we do. Thanks for giving it to me. Sometimes I feel weak when I let it out.


  2. Debilitating diseases are not fair and it’s ok to recognize that. I watched from a distance while my brother cared for his wife who suffered from Huntington’s. I learned a little bit about the way these diseases affect the people who have them and the people who live with and care for them. I cannot imagine what Ken and you go through, I can only offer a distant sympathetic ear. I hope your temperatures return to a more comfortable lever soon.

    • Thank you for your kind words, Dan. This situation is not what either one of us signed up for when we met twenty years ago. Love carries us through the ups and downs, but sometimes, we just have to talk about our challenges.


  3. I am so sorry the heat has zapped strength and time from both of you.
    we finally got a break in the weather yesterday, and today is actually cool. I hope it is coming your way. Sometimes we need to vent to stay strong Barb.

  4. The heat certainly zaps the energy out of people and I totally understand your frustration. When my hubby was sick last year (and the year before and the year before that) he would sleep all day and night and it was very draining (and lonely). I would get angry a lot, but in the beginning I didn’t realise how sick he actually was. When you’re used to doing things with a certain person it gets very lonely when they’re ‘not there’ (in energy) to do them anymore. *hugs*

    • It’s nice to talk to somebody who understands the frustrations of dealing with a chronic illness. As always, Thanks Diane. You’re a peach!


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