When you have multiple sclerosis, it’s hard to enjoy summer

It’s not as though I do well in winter either, but — with apologies to Mr. Shakespeare — now is the summer of my discontent. It’s a shame, because even though autumn is my favorite season, I’d always enjoyed summer. Frozen desserts, vacations, fun activities around the water, and just sitting in the shade with a cool drink were just some of the pleasant things that I associated with this time of year.

I didn’t mean for my use of the past tense to make it sound as though I’ll never enjoy those things again. I still associate them with summer, but like so many other things, multiple sclerosis (MS) has severely limited my ability to participate in them. I know I shouldn’t equate association and participation, but I’m going to blame it on this disease for blurring the lines.

That was an oddly appropriate choice of words, because one of the main symptoms of MS and its heat sensitivity is blurred vision, a condition known as Uhthoff’s syndrome. For me, the heat also brings on overall weakness, loss of what little motor control I have left, and difficulty with cognition. Any one of those would hinder a person’s ability to participate in a summertime activity, but together, they can make it nearly impossible.

Recommended Reading

June 28, 2024 Columns by Susan Payrovi, MD

My routine for dealing with MS and heat sensitivity while traveling

Me vs. hot weather

Before I was diagnosed with MS in 2014, I was completely unaware that the disease and heat don’t go well together. For some reason, I still occasionally expect everyone else to understand this idea as though it’s a universal concept. It sometimes leads to me being a little resentful when I’m invited to join a hot-weather activity with friends or family. I have to remind myself that I would’ve done the same thing a decade ago.

Another thing I would’ve done before I knew that I had, or accepted that I had, multiple sclerosis was to just try harder. I’ve never been particularly fast or strong, but what I am is stubborn, and I can chalk up a lot of my life’s accomplishments to that attribute alone. Like a strong-willed child, if someone told me that I couldn’t do something, it would make me try extra hard to prove them wrong.

I’m guilty of trying even harder to overcome some of the symptoms of MS. That might work on some of them, but when it comes to heat and MS, I’ve found that I cannot out-stubborn it.

What I’ve also found is that there’s no acclimating to temperature when you have this disease. There was a time in my life when I could go to any environment — hot, cold, wet, or dry — and thrive so long as I had some time to become accustomed to it. I’ve accommodated plenty of disabilities from MS, but I can’t say that I ever got used to, or acclimated to, any of them.

For someone who enjoys summer activities, especially with loved ones, not being able to fully participate is hard. If you’ll allow me to quote Mr. Shakespeare for my own purposes again, it’s the unkindest cut of all.

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.