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Beating the Summer Heat When You Have Multiple Sclerosis

The sounds of birds singing, children playing and crickets chirping.

The smells of barbecue, freshly cut grass or the beach.

The kiddos’ nightly ritual of swim practice at our neighborhood pool.

Sweaters have been replaced by t-shirts, pants with shorts, and shoes turn into flip-flops.

It can only mean one thing.

Summer is coming.

Or if you have multiple sclerosis…

Summer.

Is.

Coming.

<cue horror music>

Living with multiple sclerosis is like being at an all-inclusive resort, but instead of unlimited food, margaritas and fun, it’s a non-stop barrage of chronic symptoms — some fleeting, others longer, stronger and more debilitating. During the summer months, each of these struggles are amplified for me courtesy of the big, beautiful and blazing Texas sun.

Heat intolerance is a major symptom of my MS; it doesn’t bother everyone, but it is my kryptonite. When the temperature starts to approach 90 degrees, I head into hibernation. Here in South Texas, that starts in June.

I don’t become a hermit, but I come close.

Summer. Is. Coming.

Being outside for just a few moments can bring about blurry vision and dizziness. On many occasions, my wife has needed to assist me in just getting to and from the car. What a sight it must be to watch her tiny frame attempt to hold me up until I find relief in the air conditioning.

Summer. Is. Coming.

I always try to find the silver linings of living with MS. But it’s hard to find even a glimmer in this particular one.

Growing up, summer was king. School was out, my friends and I would run the neighborhood all day. There were late nights, amusement parks, pool parties and just an overall feeling of freedom. That excitement and joy I felt for summer in my youth has been replaced with fear and trepidation.

Will the heat cause another relapse? I’ve had exacerbations throughout the year, but the ones that have occurred during the summer seem to be more severe.

Do my struggles with heat steal the joy my children should feel about summer? I want their reality to be the same as my childhood memories – thrilled to have a break from school, frolicking in freedom, not “summer was
always tough because of my Dad’s MS.”

Summer. Is. Coming.

These hot temperatures hit me the hardest. I find refuge in pools. For some reason, the heat does not bother me when I’m submerged in the water. I actually feel pretty good. But the moment I ascend, I can feel myself melting. I see double, feel dizzy and my limbs weaken. The freedom I had from MS quickly evaporates.

I can’t live in a pool for the whole season, so what’s my survival strategy?

I plan outside adventures before the sun peaks or after it sets. In a way, this works to our benefit. If we visit the zoo, park or other places, we are the first to arrive and the first to leave, avoiding the crowds and long lines.

Carrying cold water with me everywhere is essential.  Sometimes I even wear a frozen wrap around my neck to lower my internal temperature.

And for family vacation, instead of driving south to the Texas coast, we head north and find solace in cooler temperatures.

But most of all, I rest. Finding refuge in a cool place, away from the bright sun and sweltering temperatures is the best choice for my health.

Summer. Is. Coming.

Once upon a time, I celebrated the arrival of summer.  I still remember sprinting home with my friends after my last day of sixth grade. Thirty-two years later, that young boy is grown but my dream of what summer should be remains.

As I brace myself for the hot weather, I hope for no new exacerbations.  I hope my limitations don’t prevent me or my family from making nostalgic memories. I hope to not hear the summer horror music this year.  I hope…

Getty image by Momnoi.