Now that summer is upon us, I am already mindful of the blistering heat and humidity that are par for the course living in NJ. I definitely love the summer vibe that is palpable everywhere you go, as winter coats are traded in for tank tops and Uggs go back in the closet in favor of flip flops. While I can appreciate the sentiment, summers are not easy for me due to heat intolerance caused by Multiple Sclerosis.
The sun, while beautiful, could quite literally be the death of me.
This year I am particularly anxious about it. Since my vaccination status is null due to the Disease Modifying Theraoy I am on for MS, I am supposed to be acting as if I am not vaccinated, which means no indoor dining. While summer is the time that I normally catch up with teacher friends and former students, we are relegated to outdoor visits only, which can’t happen during the sweltering weather here in NJ. So this year, I am taking the whole heat intolerance thing a lot harder than I normally do, because I am feeling isolated yet again. And to make matters worse, I haven’t exactly been able to figure out why the heat and humidity can wreak such havoc on my body, even when I am confined to the meat locker conditions that keep our air conditioning pumping all summer to maintain a blustery 64 degrees inside our home. But it does.
I spend the vast majority of my time during the summer inside anywhere that it is climate-controlled, preferably where I have control of the thermostat. While I am grateful to live in a country where air conditioning is available and with a husband who appreciates the cold air, too, this really is a necessity for me, and many other MS patients, who are deeply affected by extreme temperatures at either end of the thermometer. I wish it was simply a matter of heat making me feel uncomfortable. Or me disliking being hot. However, when I overheat, it is much more serious than that. My body begins to buzz and vibrate everywhere, from the inside. All of my symptoms are magnified, which means my tremors are exaggerated (even in my voice and my eyes), I tingle from the bottom of my feet to the top of my head, and most importantly, I suffer from what is called Uhthoff’s Phenomenon, which occurs due to optic nerve damage. This is by far the scariest of my heat-induced symptoms because it causes my vision to get blurry, distorted, lose borders, or go away entirely. (Just a side-note that this can also happen when exercising, which is always a balancing act walking that very fine line between working hard, and over-working.) So naturally, I do everything within my power to avoid all of it by staying cool. In summer months, a look inside my bag will reveal snap and break ice packs, a mister, a hat to keep the sun off my face, and a good old fashioned folding fan.
Summer beach house with the family… private beach entrance means I can come in and out of the heat as needed.
When I was still working, I jumped through unbelievable hoops to have air conditioning installed in my classroom, which was a process that did not happen quickly or easily. The principal of my building at the time was not happy about my request, and she even told me that people who had made such requests in the past were told to get a job elsewhere. I didn’t. Because the Americans with Disabilities Act requires employers to make reasonable accommodations such as this one. It was a simple solution to maintain my ability to continue to do my job, and everyone acted like it was a gift. I often had co-workers tell me “it must be nice to have AC in your classroom”, to which I always responded I’d trade the air conditioning in a second for a healthy immune system. I would have preferred to be healthy and hot than to require this accommodation in order to perform my job.
While air conditioning is my savior during the oppressive heat and humidity, I do experience “cabin fever” as the lazy days of summer lead to autumn. I am especially worried about it this year because I have been isolating so much, and missing seeing some of my favorite people. I am just hoping that somehow we get a more temperate summer so that I can enjoy some time outdoors (with or without loved ones), soaking up some Vitamin D, without fear of losing my vision due to overheating. Thinking back to past summers and how antsy I get by being constantly held hostage by my need to stay cool, makes thinking about this one incredibly intimidating.
I dream about the days before MS limited my time at a place I love so much.
In the long run, I always do what I have to do because I have been doing it so long that it’s all I know. The point of this whole entry is that heat intolerance is real, and many MS patients suffer from it because we can not thermoregulate like others do. In other words, our inner thermostats are broken. Just a few years back, we lost one of our own because before she realized how overheated she was, she had become paralyzed and could not even speak. She was rushed to the hospital but because she could not thermoregulate, her core temperature had risen to 107 degrees, and despite being packed in ice, she did not make it.
If you are heat intolerant, please be prepared, and educate those around you so that they can help you if need be. No one wants to see another warrior succumb so tragically and unnecessarily. Even though I have been aware of my heat intolerance for many years now, it took me a long time to realize just how serious it can be. Now, there’s no way I could ever forget.