Summer is Coming

The sounds of birds singing, children playing and crickets chirping. The smell of barbeque, freshly cut grass or the beach. Sweaters have been replaced by t-shirts, pants with shorts, and shoes turn into flip-flops.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 MS:

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.

For me, each of these struggles are amplified courtesy of the big, beautiful and blazing Texas sun in the summer months

Heat intolerance is a major symptom of my MS; it doesn’t bother everyone the same, but for me, it is my kryptonite.

When the temperature starts to approach 90 degrees, I head into hibernation. And 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 A/C.

Summer. Is. Coming.

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

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. Then the freedom I had from MS quickly evaporates.

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

Outside adventures are planned before the sun peaks or after it sets. In a way, this works to our benefit. Wherever we go, 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.

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 memories. I hope to not hear the summer horror music this year.

I hope…
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Michael

Michael Wentink, Blogger

In 2008, Michael Wentink was diagnosed with multiple sclerosis. At 31, he was a new father, a recent MBA graduate and a Director at a Fortune 500 company. MS altered this path and after an early retirement, Michael is now navigating life on a road less traveled. A native of Northern Virginia, Michael currently resides in San Antonio, Texas with his wife and two young children. Read about his journey with multiple sclerosis at mjwentink.com and follow him on Twitter.

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    5 Comments

  • Meredith O'Brien   Jun 28, 2019 10:13 AM
    You aptly and powerfully summed up my reaction to summertime weather.

    Summer = Staying inside with AC
  • Ann Thorson   Jul 6, 2019 11:15 AM
    nicely put, and sums up the same mixed emotions I have about summer. I am happy to see friends and family but need to cut outings short due to the heat and its affects on my body, My fatigue is worse I hope all my love ones know I am doing what I can handle.
  • Avatar
    EssenTIAl82  Jul 10, 2019 12:35 AM
    ODgrUsfwJzWXGN
  • dkw  Dec 12, 2019 7:00 PM
    Hi Michael. Thanks for sharing your experience and with humor. We have to hold onto that. I am currently in the process of an absolute diagnosis of MS. I have been eliminating other mostly, for some reason, strangely named diseases up to this point. I had just about given up when I had the biggest relapse of All this June. I unknowingly set this is motion by deciding to take a month to chill on the beach in Florida in June. Yes, you know what came next! I somehow found my way home after only one week, where on top of all exacerbated (your word, i like it) symptoms I had contracted Shingles from my sister, who has the Same symptoms and had visited in May. It is December and I am finally able to walk to the mailbox again! Thank you again, and maybe someone can learn Before its too late what the summer sun in Florida or Texas can do:)
  • Avatar
    jasonprestovfd  Dec 12, 2019 10:22 PM
    Well said!
    Summer heat is evil to me, but I'm a volunteer firefighter and have served my community for the past 28 years. The heat of a house fire is the Devil...
    It is a tough transition going from an active firefighter who enjoys outdoor living, fishing, hunting, camping, hiking, boating & everything else outdoor life is about. My boat hasn't moved in 3 years, I cant even think about walking into the woods and I stepped down from captain of my fire department last year. I've even air conditioned my garage so at least I can enjoy carpentry and wood carving in my garage during the summer. I dont have any bon fire parties with friends during the summer anymore, but if it's cold outside the bon fire is going. My chair in placed far away from the fire that the heat dosen't get to me.
    Yes, Sumner. Is. Coming...
    But the fire pager is only seconds away from going off...
    MS sucks and is a rough road, but the heat intolerance has rocked me to my core.
    It's a hard tradition to go from the guy that can help you no matter what bad situation you got yourself into, to the guy who dont leave my house if its above 75 degrees or below 50 degrees (cold intolerance is just as bad). MS is a thief not only to me, but also to my family, department, friends, and my community...