How the Inability to Regulate My Temperature Affects Me

Jennifer van Amerom avatar

by Jennifer van Amerom |

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I love beach vacations. I put my phone and laptop away, grab a good book, and head out into the sun. But the sun is not to be messed with, especially for an immune-suppressed patient. Many medications can cause sun sensitivity, among other challenges.

According to the U.S. Department of Energy, 430 quintillion (that’s 430 followed by 18 zeroes) joules of energy from the sun hit the Earth every hour. To put that into context, the average American home used 39 billion joules of electricity in 2013. When I’m feeling defeated, it helps to remind myself that, with or without medication, we are insignificant compared with the power of the sun.

Extreme weather

Scientists have found that climate change is causing extreme weather events to become more intense and frequent. Many U.S. counties issue heat advisories and excessive heat warnings when the local heat index reaches a certain temperature, warning residents to take precautions.

I have always found it tough to stay inside. In the winter, I snowboard, and in the spring and summer, I garden and enjoy the smell of freshly cut grass. But I struggle with the huge difference between indoor and outdoor temperatures.

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We use an Ecobee smart thermostat to heat and cool our home. I’m able to change the temperature using a phone app, and I adjust it depending on how I feel that day. This became important after my first major neuromyelitis optica (NMO) attack. My body lost the ability to regulate its own temperature, especially in extreme weather.


Because I can’t control the wall of heat or blast of cold I’m hit with when I open the front door, there are days when I reconsider going outside. If I leave my home, I may contend with pain as my body tries to adjust to the temperature change. If I stay inside, I am isolated and unable to accomplish what I set out to do that day.

The mechanism our bodies use to maintain a stable internal temperature of about 98.6 F is called thermoregulation. In a healthy person, the hypothalamus, sweat glands, skin, and circulatory system work together to regulate the body’s temperature.

Unfortunately, the thermoregulation process is too slow in many of those with NMO or other central nervous system disorders. For me, the inability to regulate my bodily temperature means I develop an instantaneous headache, my skin turns red like I have a sunburn, and my extremities become either far warmer or colder than my core.

Making accommodations

I’ve tried various tips, tricks, and tools, but none have been as beneficial as the gift of water from Mother Nature. When I’m about to face the glaring sun, I hydrate with ice water. When I’m about to tackle a harsh Canadian winter day, I’ll drink a cup of warm jasmine tea before heading out.

Some patients swear by heating or cooling vests. I’ve tried both, but the cooling vest was unattractive, and the battery pack on my heating vest is awkwardly positioned at the waist, getting in the way when I bend over or try to sit down.

I’m always looking for new ideas, so please share in the comments below what’s helped you.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).