Very few people like being hot. So when I say I hate the heat I know I’m not stating some sort of outrageous opinion. But when I say I hate the heat….I mean I really REALLY hate the heat.
About a year before my MS diagnosis I was diagnosed with heat intolerance. My face would flush way too easily and I’d get extremely tired after time in the sun. If you’ve seen my complexion you might be thinking ‘well duh, you are translucent”. But its more that just red cheeks and bit of sweat, its a bright red face that feels like fire and a body so sweaty I feel like my blood is boiling. Before my MS diagnosis I felt like a whiner. Maybe I was over reacting and things really weren’t that bad, and maybe it was all in my head.
But with my MS diagnosis came the validation that I was not just a crybaby (this time). Actually, a lot of people with MS have heat intolerance. Heat intolerance is described as a hypersensitivity to heat. If you have heat intolerance, your body doesn’t regulate heat as it should. Your brain doesn’t tell the rest of your body to cool down. So instead, you feel like your body is baking from the inside out. Unfortunately, as the disease has progressed over the past year, I went from over heating during a cardio class or a few mile walk in the sun, to experiencing heat intolerance symptoms multiple times a day.
To give an example; Last week I went to a rooftop bar with my friends. It was about 7:30 pm, we weren’t in the sun, and there were fans blowing right on us. It was a 100 degree day. And sure, everyone was sweating. But I was melting. In these situations my breathing becomes labored and my heart feels like its going to beat right out of my chest. My Optic Neuritis acts up so my sight in my right eye goes blurry. It is more than enough to ruin a good time. It would be one thing if it only happened in situations like these, but it’s more than that. It’s when I clean my apartment, or walk to the mail room, or take a shower, or do literally anything that may increase my internal body temperature by the tiniest amount.
When I feel this way it’s hard for anyone to notice. Unless I’m actively complaining, people don’t realize what I’m going through. Aside from a red face after a workout, my discomfort isn’t visible. If you know me , you know I’ve always expressed my complaints (not my best trait), but this is different. If I were to complain about my heat intolerance or my MS and how it is making me feel, I would be complaining all day every day. And who would want to spend time with that girl?
One exciting thing about having MS in 2020, is that there are ‘cooling devices’ that help give your body the signal that it’s time to cool down. So far I have tried ice packs and a cooling towel. Neither of which are very fashionable, and they make me look like a major drama queen, or like an elderly woman (no offense to the older ladies out there). But I’m lucky, years ago there were no discrete cooling cooling vests, ‘fashionable’ cooling scarves, or ice packs made in every shape possible. As I continue on this journey of understanding my illness and fighting through the tough times, I need to remember I am fortunate enough to have options on cooling myself down, no matter how silly I may look. So if you see someone out and about using a cooling device, don’t judge. If you think someone is being over dramatic about how hot they are, try to be understanding. And if you catch me with ice packs on multiple parts of my body, don’t be surprised. We probably hate the heat more than you do.