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How the Heat Affects Me as Someone With LEMS

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The weekend after Labor Day, my son was at my house so I asked him to take out my air conditioner. Nights were getting cooler. Some days were perfect 70-something degree days. On days that it was in the mid-60s and below, I had started wearing hoodies, fleece jackets, jeans and shoes with socks. Why not take advantage of my son being around and have him take the air conditioners out for me?

I wish someone had tapped me on the shoulder and said: “Hey knucklehead, you have LEMS and if there is one last heat wave, you are going to pay dearly for taking the air conditioners out early.”

These last two weeks have not been easy. Temps hitting the high 80s to 90 on many days, coupled with humidity and then drastic temperature drops at night have caused my LEMS to flare. Heat causes the transmission of messages from nerves to be delayed, and when the messages have been minimized already due to a neuromuscular condition, heat amplifies what’s already going wrong. This is true for other neuromuscular conditions like multiple sclerosis and myasthenia gravis as well.

Think about the last time you had dental work done at the dentist that included numbing half of your face. You may have had a major project at work that needed to be completed or a final exam scheduled directly after the appointment. What is the only thing you could think of after the dentist? Most likely your numb cheek. Then when the tingles come as things are coming back to life? Didn’t you keep touching your cheek with your fingers from the outside and tongue from the inside to see if all of the feeling was back yet? That is exactly what happens to me due to LEMS. Only, it’s not only my cheek. Sometimes it’s my whole leg, the bottom of my foot, and the worse times are when it’s my entire face along with my legs and the bottom of my feet. When that happens, it’s tough to concentrate and keep going about daily life without it being in the forefront of my mind. When my LEMS is flaring I also experience extreme exhaustion and brain fog. Thus, this will be my shortest piece to date!

I’m very fortunate that only on a few occasions have my legs or other body parts gone completely numb due to my LEMS. It’s like having a dead appendage. I’m only able to move it if I physically move it with a hand that still has feeling. It’s scary when it happens. It’s far worse and of much longer duration than your leg falling asleep. There are LEMS patients I know online who are unable to walk, or worse yet, unable to move at all if their LEMS gets out of control. Typically they have LEMS that is caused by a malignancy.

After the last couple of weeks of being reminded that I do need to stay cool when temperatures soar, I will wait until December to take out my air conditioners next year. Now that the end is in sight for this heat, I’m hopeful to be back to 100 percent again. When living with autoimmune disease, a flare can come out of nowhere and remind you of where you have been. However, I choose to continue to look forward to when the flare subsides and what fun I will have then.

This post originally appeared on The Battle Within.

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Originally published: September 29, 2017
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