Making the Most of Both Good Days and Bad

Jamie Hughes avatar

by Jamie Hughes |

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If you have multiple sclerosis, no matter how long you’ve lived with it, you likely know it can be unpredictable. It can hit in weird ways you’re not expecting, even after years of learning how to deal with it.

For instance, last Saturday, my family of four and some friends visited the Legacy Museum and the National Memorial for Peace and Justice in Montgomery, Alabama. It was a well-curated space, and it gave us a lot to think about. So much so, in fact, that my husband and I had a very fruitful discussion with our kids on the ride home.

But man was I wiped out when we got back! I mean, I was wiped out in a way I haven’t been in a long time. Maybe it was the heat. Maybe it was standing on my feet for several hours reading displays and watching educational videos. Maybe it was all of the emotions I had to process as we moved through exhibits focused on slavery, lynching, and mass incarceration. It could have been a combination of all of that, but whatever the cause, I collapsed into bed Saturday night and was very slow getting up on Sunday morning.

Sometimes, fatigue can be hard to qualify to people who don’t have to deal with MS. To help them understand, I often say there’s “normal tired” and “MS tired” and try to explain the difference. But with my husband, I use two other descriptive phrases. I tell him I feel like Major “King” Kong (the character who rides the atomic bomb like a bucking bronco toward the end of “Dr. Strangelove“) or Maria von Trapp (the singing nun who spins happy circles in the opening scene of “The Sound of Music“).

I think it’s a fairly clear visual. Some days, I feel great. Like Maya Angelou says, I’m singing, swinging, and getting merry like Christmas. Physically, mentally, spiritually — everything is working well and all is right with the world. Those are Maria von Trapp days. Other times, life is nothing but misunderstandings, madness, and failures galore. Things are falling apart (including my body), and I feel like I’m headed toward certain doom on the nose of a rocket. Those are Major Kong days.

Here’s the thing: There’s no way to make a Major Kong day into a Maria von Trapp day. They just are what they are. I have to remind myself that we’re promised a certain amount of both in life and accept the fact that some days are going to be harder than others. I don’t really get any input or say-so, either!

But in the 17 years since I was diagnosed, I have figured something out. Knowing that hard days aren’t the only things I have to look forward to helps me get through them. And being aware that every one of my days won’t be full of sunshine and yellow flowers helps me appreciate the good days even more because I know they’re not guaranteed. Each has their purpose, and I don’t think we really can have one without the other.

So, whichever one you’re experiencing today — if the hills are alive with the sound of music or the mushroom cloud is blooming on the horizon — just know that nothing with MS is permanent. The only constant, as they say, is change. Make the most out of your good days and find a way to laugh through the less-than-stellar ones.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Jeanne Vilneff avatar

Jeanne Vilneff

I really enjoyed this aticle. It reinforced how I live my life these days...good days and bad days.
Thanks

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Jamie Hughes avatar

Jamie Hughes

I'm so glad you enjoyed it, Jeanne. Hoping there are more good days than bad!

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Christine Gendron avatar

Christine Gendron

Hi Jamie! Great article! It really puts things in perspective! Thanks!

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Jamie Hughes avatar

Jamie Hughes

Thanks for the kind words, Christine. Blessings to you today!

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Leanne Broughton avatar

Leanne Broughton

i just read something called THE SPOON THEORY. An analogy to explain an autoimmune disabiling disease to someone who does not know anything of the disease. Google it, I think it is well known. A similar analogy as yours?

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Jamie Hughes avatar

Jamie Hughes

It is a great analogy for sure, but I don’t think it’s quite the same as what I’m talking about here. Spoon theory is about daily energy being expended and being mindful about that.

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