“It’s so cold in here,” Alvaro complains, putting on a sweatshirt even though it’s mid-June. Sometimes he’s right; it is a little chilly in our house, but I like it that way. Even before MS, I hated the sun and the heat it brings. Growing up in England, we didn’t get much of either, but moving to Nebraska came with heat like we’d never known before, temperatures in the 100s when we arrived, and a new enemy: crippling humidity.
There were a few things we didn’t question growing up, rules handed down from my father to reduce waste. Some of the highlights include there almost never being a reason to use paper towels, and in the rare case they were called upon, jobs should only require a single sheet, or better yet, a halved one in the time before rolls came with breaks at the half-sheet mark. Ziploc bags were washed out and reused. Our brown paper lunch bags were also supposed to be brought home and reused. It was so embarrassing to fold up a lunch bag when other students were throwing them away (along with their Ziplocs!) that my brother and I would chuck them at school and then come home and wrinkle up a new bag, trying to make my father think it was the old one come home. Other rules addressed water conservation. Showers did not exceed 5-10 minutes. Bathtubs were not to be filled all the way, and we certainly never topped them off with more hot water halfway through to linger, at least not when Dad was home. Perhaps the most important guideline was to never, ever, ever touch the thermostat, a rule so ingrained that I still feel a mixture of guilt and glee when I lower the temperature in my house to 70 degrees, where I like it best, causing Alvaro to burrow in his sweatshirt. Air conditioning is one of the great loves of my life, but I still cringe when Alvaro takes 30-minute showers and indiscriminately uses paper towels, better able now to appreciate my dad’s sensibilities.
Some people with MS have adverse reactions to extreme cold, but I’m fortunate not to be one of them. I love cold weather–rain, snow, ice, all of it, so much so that Alvaro calls me Queen Frostine. Heat, on the other hand, is another story, and my loathing for it has found new depths since diagnosis. For most people with MS, heat and humidity exacerbate their symptoms quickly. Increasing core temperature by as little as a quarter of a degree can cause significant problems. When the temperature outside rises above 75, I crumple a little inside, knowing my legs are going to weaken faster, that tingling and numbness are waiting in the wings.
The lingering haze in my left eye courtesy of optic neuritis (ON) increases after a hot shower or when I’m out too long in the heat, something known as Uhthoff’s Phenomenon (UP), identified in 1890 when Wilhelm Uhthoff, a professor and founder of neuro-opthamology, described patients whose optic symptoms increased along with their body temperature. Although this idea wasn’t named UP until 1961, people who have had ON are generally familiar with it.
Heat has profound effects on MS, a discovery made before the disease even had a name. One of the tools doctors used early on to help diagnose MS was the hot bath test. This test has its origins in 1824 when Charles-Prosper Ollivier d’Angers described a case now believed to be MS in a patient who experienced numbness in his right leg and lost dexterity in his hands after a hot bath. The term “multiple sclerosis” wasn’t coined until 1868—when it could only be diagnosed by examining the brain and spinal cord after death—and from that time to the early 1980s, patients suspected of having MS were sometimes placed in a hot bath of 106-110 degrees Fahrenheit for 10-15 minutes to see if neurological symptoms worsened as a result of their core temperatures being raised. It was not a reliable test on its own, but positively identifying MS outside of autopsy was difficult before the 1970s brought CT and MRI scanning.
Today, it is uncharacteristically cool in Nebraska for June, the temperature forecast to top out at 72 degrees. I’m working this morning at the college, and students keep complaining about how cold it is, rubbing the goosebumps on their arms and wondering where summer went. I sit quietly and smile because I know that the dog days will be upon us soon, forcing me to walk on the indoor track, spending as little time outside as possible so fatigue doesn’t take over, my home—even as it brings others to shivering—a shimmering oasis. Stay cool, friends. Love, Queen Frostine