Heat Intolerance, In My Own Words

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This past week I spent my days on the beach or lounging by the pool in South Carolina with my husband’s family and I can’t believe that I actually made it out alive. Not because there were 13 adults, four kids (two of which are toddlers), and two dogs in one house together but because of the heat. Although I’ve never been a fan of the heat, this summer it seems as if I’ve entered a new realm of hell on earth when it comes to temperature. MS and heat just do not mix. To be quite frank, this wicked witch is melting. I became overheated on several occasions during my trip and I acted like a total jerk. I hate using my MS as an excuse, but this time I definitely think that it played a part. Maybe the lack of sleep had something to do with it. Regardless, MS manages to get in the way in some fashion EVERY SINGLE DAY of my life. Today, I discuss heat intolerance.

Heat slows down nerve transmission so when nerves are already only functioning at partial capacity due to the MS and loss of myelin, the heat causes a standstill in transmission in those areas leading to fatigue, weakness, and cognitive impairment. Essentially, all of the automatic functions in my brain slow down or stop completely. I have a hard time with the cold too, but more so the heat.

When I’m hot, I don’t just get uncomfortable.
I get “oh my god I’m melting from the inside out” miserable.

The best way I can describe it is if you imagine being trapped in a car in a parking lot on a hot summer day…with the windows only cracked a few inches. It wouldn’t take you long to begin to overheat, even if you were just sitting there. No amount of water would quench your thirst or cool you down. When you fanned yourself with whatever you found in the car, moving the hot air across your body would provide no relief. It would become difficult to breathe. You would get lightheaded and dizzy. You might begin to see black spots. You would panic and begin to look for ways to get out. The only thought in your mind would be how to escape the heat. That’s what it’s like for me in heat and humidity. Every part of my body feels like it’s shutting down. My head swims. My heart pounds. I can’t catch my breath. The only thing I can think about is getting out of the heat.

In addition to overheating, it also causes my symptoms to flare up. Even the slightest elevation in my body temperature (less than one degree!) can cause me to become fatigued. My right leg often weakens. I experience cog fog, dizziness, and confusion. With all of that comes agitation and a feeling of faintness. When I get overheated, I need to cool down fast or else risk a fall, or worse…losing it and acting like a jerk. I’ve become accustomed to some quick cooling methods such as cold packs on my head and neck, sitting on the AC vent at home, sticking my feet in ice water, and so on but these methods aren’t always available when I’m out and about. That often means turning down invitations to outdoor events or activities where there will be no access to A/C or fans.

When I absolutely cannot avoid the heat, I plan ahead. Earlier this week I had a job interview that required me to walk several blocks through downtown during the hottest part of the day, so not only was I trying to avoid overheating to keep myself presentable for the interview, but I had to keep cool enough to stave off the cog fog and the dizziness. Who wants to show up to an interview sweaty, dizzy, and confused? I planned my entire day around this interview just to be sure that I had all of the tools necessary to keep from overheating. My outfit, my route, and the items in my bag (personal fan, water, and a solar umbrella) were selected very carefully and everything served a purpose. Go ahead, laugh. A personal fan? Yes, indeed. It’s been a lifesaver on many occasions and one AA battery lasts days!

I’ve often dreamed of moving somewhere where the temperatures are mild all year round but I’m pretty sure that place only exists in my imagination. Until then, I’ll carry the personal fan and the solar umbrella.

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5 thoughts on “Heat Intolerance, In My Own Words

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