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 Sweaters have been replaced by t-shirts, pants with shorts, and shoes turn into flip-flops.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