Too Warm or Too Cold With MS

Must I choose between uncomfortably cold and dysfunctionally warm? Before I had multiple sclerosis (MS), I didn't worry much about temperature. If it was cold out, I put on a coat. If it was hot, I could take off a sweater, but if I didn't, nothing bad would happen.
After 40 years of MS, I have to think about temperature constantly. If I let myself get too warm, my body stops working. If I wait too long to take off that sweater, I won't be physically able to do it.
Two of the three times MS has landed me in the emergency room, it was because of getting too warm and not being able to sit up. One time, the day started off cold, so I dressed in a few layers and went to see some art shows. When it got warm, I was too engrossed in the art to notice. When I noticed, I tried to take off a pullover I was wearing, but I could not lift my arms well enough to do it.
I should have asked a stranger to help me take off some layers, but I didn't want to bother them or to be embarrassed. I tried to tough it out. I wound up on the floor and got an unwanted ambulance ride to the hospital.
That was five years ago. Since then, my temperature sensitivity has gotten worse. Now, I'm also quite uncomfortable when I get too cold. My body hunches in on itself to keep warm, I start sneezing and coughing, and I can't wait to get home and warm up. But if I get too warm, it's worse. Then I need to get into bed, or everything falls apart.
I wish it were a question of finding a 'sweet spot' – not too hot and not too cold. But for me, there is no sweet spot. I can actually be too warm (weak) and too cold (uncomfortable) at the same time.
It's taken me a few years to realize just how important it is to take off layers when I start to get warm. Like right now, writing this, I had to take off a sweatshirt and just wear a T-shirt, because the day is warming up.
How does this work out in the world? Memorial Day weekend, I spent a delightful two days at San Francisco's Carnival celebration. So much dance, music, art, costumes, and food, all in one place. I love it and almost never miss it, but it's in the Mission District, on the warm side of town. It is difficult for me to spend hours there without getting into a temperature crisis.
This year, I was smart. I packed four layers: two T-shirts, a sweatshirt, and a sweater. I paid attention to the weather and how I was feeling and frequently changed between outfits so that I felt cool but not uncomfortably cold. It wasn't finding one right outfit; it was frequently changing to fit my body's needs at the moment.
I missed some moments of the parade, because I was busy putting on or taking off a sweater. It was a lot of hassle, and I'm sure a few people were wondering, 'What's up with him?' but it enabled me to enjoy the event and not collapse.
Temperature balance is important at home, too. My apartment, especially my work area, tends to get warm. If I'm busy writing, I might not notice until my fingers stop working and I can't type anymore.
Right now, I'm still warm, so I have turned on an electric fan that sits by my desk. I love that fan; at its low setting, it really does seem to put me in a sweet spot of not being too hot or too cold. Fans are great; they use way less energy than air conditioning, so they're better for the environment, and they work right away. They cool you without unnecessarily cooling the whole house.
So, there are a lot of tricks. To avoid heat, stay in the shade; if you're cold, get into the sun. Some people with MS wear cooling vests or neck wraps if they can't avoid being out in the heat, but San Francisco rarely gets that hot. Drinking lots of fluids, iced or not, helps control our temperature.
Like with a lot of other MS symptoms, there are many things we can try. For me, doing the right things means taking our time, paying close attention to our bodies, learning and trying new things, finding balance, and then doing what works. That process applies to mobility issues, doing tasks, enjoying life, and a long list of MS challenges, including heat sensitivity like mine.

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