Too Hot to Handle

I love traveling and I love sunny warm weather. I will admit that with my narcolepsy, summer can be a little more taxing. But still if I am looking for a holiday destination, I will be picking somewhere tropical. I was born and spent my early years in Jamaica, spent summer holidays in Florida, and have spent months in Kenya.

I can handle the heat, I can handle intense sun, and I can manage the humidity. I know and have learned how to adapt my trips to help better manage the exhaustion from just existing in 35C/95F degree weather. I know I need to make sure I am hydrated, that I need my fan to keep me cool, and I will need to take extra naps throughout the day.

Feeling faint from very hot weather

Not long ago I had an experience I had never had before and got a feel for how my body manages with very hot weather. I went to Spain in the middle of the heatwave in Europe at the end of July for 8 days. On the day in question, we traveled to see the gardens at the Royal Palace of La Granja of San Ildefonso. It was absolutely beautiful, and we spent hours walking through the gardens, taking photos seeing the lovely fountains.  It was massive and very, very hot, but there was lots of tree cover and shade, so it did not feel so bad.

It was not until we headed back to the car that I started to feel very weak and faint. At first, I thought I was just tired, but once we got into the car my heart started racing. My heart was beating really fast, I felt nauseated and so thirsty. I was feeling very unwell and wanted to sip some water, but I did not have the energy to reach my water bottle that was just by my feet.

I remember thinking, okay you know that the narcolepsy makes it a little trickier for your body to regulate, so just drink some water and let the air conditioning in the car help you regulate and get it under control. But I could do nothing to change it, I felt like I was getting hotter and hotter, and my heart was beating faster and faster. I was feeling sick.

This felt different than my cataplexy attacks

I wanted to tell my friend to pull over the car, as I felt like I wanted to throw up, but was unable to communicate it. I could not speak and could not move. It felt strange because my cataplexy attacks have a similar feel, yet this felt different. I was not losing muscle control, yet was paralyzed and could not move my limbs. I struggled to comprehend what was happening, I couldn’t move, but my head was not bopping or my legs shaking, which often accompany a cataplexy attack. Others can see and tell when I have a cataplexy attack, but my friend sitting right next to me could not tell anything was wrong.

I felt like internally I was screaming for someone to please help me. Wondering why no one can see that I need help, here I am dying but no one can help me; no one can see what is happening. This went on for like 20 minutes as we drove to our next destination.

By the time we reached it, I had finally calmed down and was able to reach my water and have something to drink. It was after we stepped out of the car that my friend said, "Oh my God Kerly, are you okay? You don't look well." It then took an hour before my body felt normal again.

Narcolepsy and body temperature

I am sharing this story, because I would like to know if this has happened to anyone else before. It was a pretty scary experience, going from feeling fine to terrible in seconds and being paralyzed and mute. Lesson learned: I need to be way more cautious if out and about in extreme temperatures. And perhaps for me at least, 38 degrees Celsius and above is a little too hot to handle.

I have learned over the years conversing with other people with narcolepsy that many of us recognize that our bodies appear to regulate body temperatures differently than our counterparts, and that is why we can feel much colder or much hotter than those around us. When people think of narcolepsy, I like them to know that just as much as sleep is affected because of the area of the brain that is not functioning properly,  so can other things like temperature regulation.

Do you have any stories with coping with extreme temperatures? What do you do to help your body cope with very high temperatures?