Multiple Sclerosis has been my constant companion since Valentine’s Day 2004. To some, it may seem cruel to get a diagnosis like that on a holiday celebrating love. To me, it was a relief. I finally knew what had completely upended our lives and the reason for my sudden, extreme illness. It ended my real estate career and changed so many things about how to navigate life moving forward in the new-normal.
One of the most debilitating symptoms, for me, is called Uhthoff Phenomenon — temporary worsening of neurological symptoms in people with demyelinating conditions. Studies show that a rise in core body temperature of as little as half a degree (for me, even less) can cause us to lose function.
Side note: I am writing this while enduring an episode of Uhthoff Phenomenon because I wanted to observe the effects on my writing ability. It is far more difficult for me to think, to create — even to type. I am typing mixed-up letters for the words I mean to write and having to make far more corrections. My backspace key always gets a workout, but this is…extra.
What caused this round? A ten-minute walk outdoors. We walked on flat ground. No exertion. Mostly in shade. We planned about a twenty-minute walk, but I felt the symptoms coming on quickly, so we headed home. The total distance walked was perhaps the length of a small city block. By the time we got into our air-conditioned house, my cognition was slowing down rapidly; I was uncoordinated, and it felt like a heavy hood was being pulled down over me from the top of my head. My eyes felt too tired to stay open, as though my eyelids were simply too heavy.
It was a mild episode.
I recall two severe episodes that happened while on vacation in Mexico years ago. The first time, I didn’t yet know I had MS. The diagnosis came a few months later. On that trip, we went on a tour with friends to the archeological site at Coba. It was a phenomenal, thrilling adventure. (I would love to return. Unfortunately, the route is no longer safe to travel.
Our tour guide was an archeologist with a great sense of humor. He made it interesting and so much fun. We climbed the Mayan temple and were even allowed to stand inside the room at the top. Amazing!
Standing on the ground at the bottom of the temple, we were in the jungle in the Yucatan Peninsula. Standing on top, all we could see were the tops of the trees, a lush, verdant canopy, for miles; an unobstructed view under a bright blue sky.
The day was hot and humid. I was struggling and didn’t know why.
Back on the tour bus, I stumbled to my seat. Within minutes I was so sound asleep that I had no awareness of anything going on around me. Thank God I was with my husband and our friends, or I would have been very vulnerable. I could not wake up. I had no control over that crushing, suffocating fatigue.
My husband woke me up when the bus stopped at our destination, Tulum, a gorgeous archeological site. I managed to get to my feet and fumble my way out of the bus, but I was not truly alert. I’ve never felt so disoriented.
The second time, our hotel was located across the street from the ocean. All our past trips had been to resorts where the ocean breeze blew freely. However, at this resort, trees lined the road, and the layout of the resort blocked all ocean breezes from reaching us. I could spend hours on the beach and handle the heat pretty well as long as I also had shade. Inside the resort, it was a different story.
As we walked from the beach back to our hotel room, leaving the breeze behind, my legs got progressively “heavier.” My cognition skills declined. I felt like I would have an emotional meltdown from the growing panic in me that corresponded with the rapid progression of my symptoms. All the while trying not to upset anyone, not make a scene, not lose consciousness right there on the hot stone walkway.
Our room was on the second floor, up two small sets of outdoor stairs, maybe ten steps total. By the time I reached the door, I was whimpering internally, maybe even aloud. I was in full panic and on the verge of vomiting. I rushed into the room, bolted for the shower and let cold water pour over me until my core body temperature cooled enough for my mind to begin to clear and for the panic to subside. I feel anxious now, remembering. This happened nearly every time we returned to the room that week.
Afterward, exhaustion hit hard. Now I know that is called PEM: Post-exertional Malaise. My body worked hard to get me through all of that and it demanded rest afterward. As miserable as it was, I tried hard to have a good time, not to ruin the trip for any of us. I loved being there with my wonderful husband and our amazing friends.
The current, spicier me is more likely to advocate for myself by reminding myself and others that I can’t help that my neurological system is broken.
Years ago, a local neurologist was conducting a study to learn more about the effects of heat on multiple sclerosis patients. I volunteered. They placed wraps around my torso, arms and legs, that had tubes for water to circulate through. The researchers could adjust the temperature of the water and, therefore, the core temperature of my body. Their protocol was to heat me up, checking my symptoms and vital signs at every half-degree change in core temperature. They performed some of it while I sat in a chair and some while I rode a stationary bicycle.
I flunked. My system was so sensitive to heat that they could not warm me up to the full temperature required to complete the experiment. I missed the mark by one half of one degree. Physically, cognitively, and emotionally, I was a soggy noodle. I couldn't think, and my speech slurred; I couldn't get out of the chair.
They treated me urgently: had me sip cool water, they quickly pushed much colder water through the tubes, placed cool cloths on my head and face, and placed ice packs under my arms and knees. When I revived, they told me I had nearly lost consciousness, and they had to stop the test. They said that even though I wouldn’t be included in their final data, they learned a lot and would set up future protocols to measure at intervals of a quarter of a degree instead.
Victory! It was proof that it wasn’t “all in my head,” though that is where the faulty wiring resides.
Summer can be depressing when temperatures rise, and I am stuck inside to stay cool. It’s been easier the past few years since I started writing again. My mind is engaged in learning, research, and the writing itself.
My writing friends at AWritingRoom.com have also uplifted me. We help each other stay on track with our writing projects during our Silent Writing sessions and craft chats each day. We keep each other inspired and motivated, creating momentum, word by word, or Bird by Bird, as our mentor, Anne Lamott, teaches.
The summers of 2024, 2025 and 2026 have been much cheerier for me because we are in Community together. If you’re a writer, I invite you to consider joining us at AWritingRoom.com.
You know me — I LOVE a good pivot, a U-turn, a search for the positive in a trying situation.
Today’s mini-meltdown revealed the upside to me. I am so excited!
I have finally found one benefit to experiencing Uhthoff’s Phenomenon.
I no longer have to place the back of my hand on the hot ground for five seconds to find out if it is too hot for our dogs’ paws.
Because my body is already screaming the answer at me as it starts its shutdown: “It is already too hot for them, and for you.”
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What messages do your body and your creativity long for you to hear?
Your descriptions of this utterly frustrating inability to tolerate heat are so spot on! I’m not happy at all that you’re experiencing this but I’m beyond thankful you describe it so well. We’re not just “sensitive to heat”, it’s actually debilitating. Thank you for this. I hope it’s read far and wide. Here’s to the cool down you need. Sending virtual high fives because it’s just too dang hot for a hug!
Thank you so much for sharing this! What a frustrating thing to have to deal with. And I agree… it’s a relief to be assured your symptoms are not in your head!