Heat Hacks for Summer Survival

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by Lelainia Lloyd |

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Summer has always been a struggle for me. While most people celebrate the warmer months and are off enjoying the great outdoors, I dread this time of year because I am very heat-sensitive.

As soon as the temperature rises above 22 C (72 F), I feel terrible. The signals from my brain to my spinal cord are slowed due to the damage caused by neuromyelitis optica (NMO).

When my core overheats, it further slows the signals and I lose the use of my limbs. In turn, my fatigue levels increase because my body is forced to work harder to communicate with itself in order to function. This fatigue is further compounded when it’s so hot that sleep becomes impossible. The less sleep I get, the more my pain levels increase, which impacts my ability to function, creating the perfect storm of misery.

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Making Adjustments to Take Advantage of the Good Weather

Over the years, I’ve had to develop ways to cope. Following are a few tips and tricks that you might find helpful if you also have a tough time getting through the summer.

Gel packs are my friend! Did you know you can get blue gel packs the size of a pillow at most pharmacies? I have two in my freezer, and on hot nights, I slip one into my pillowcase. As it thaws, the gel is soft and comfortable to lie on. After a couple of hours, I swap it out with the one in the freezer. By keeping my head and neck cool, I get a decent night’s sleep.

I am a fan of fans. I have both a ceiling fan and a small portable fan in my bedroom. I run both in the hot weather. I put the small portable fan on my dresser and aim it at the foot of my bed. We lose heat through our feet, so when the fan blows on my feet, it helps me cool down faster.

I am fortunate enough to have a portable air conditioner, however, it’s quite loud. I’ve found the best way to use it is to run it a few hours before bedtime, with the bedroom door closed. Trapping the cold air in a single room is more effective than trying to cool my whole condo down. By the time I’m ready for bed, my bedroom is much cooler and I can shut the air-conditioning unit off.

On hot days, I don’t have much of an appetite, and I have zero desire to turn my stove on. Most of the summer I keep a selection of deli meats, cheeses, pickles, veggies, dips, crackers, and fresh fruit on hand to nibble on. Smaller, simpler meals are easier and more appealing. Since I don’t have a dishwasher and my disabilities make standing to do a sink full of dishes impossible, in the hotter weather I use paper plates or a napkin for most meals and snacks. The paper plates get recycled into the compost for a quick cleanup.

Hydration in the summer is also key. It’s really easy to forget to drink enough fluids in the hotter months, which can lead to ferocious headaches. I have three water bottles that I fill and keep in my fridge. Sometimes I just want water and sometimes I’ll make ice tea or lemonade to have on hand. I like to keep a water bottle on my bedside table at night as well, so that if I get thirsty, it’s close at hand. The bottles keep my drinks nice and cold, and the lid prevents accidents.

When I need to work, I make the most of my patio space. I have a really nice table and chair set that I use to create my “outdoor office.” My patio faces our courtyard, so I have a quiet, park-like view that is fully shaded all day. If I’m really lucky, there will be a slight breeze most days. It’s nice to have this little outdoor escape. I often dine alfresco during the summer as well.

Some of the medications NMO patients take make us more susceptible to sunburn and skin cancer, so when I’m outside, even if I’m just on my patio, I wear a long-sleeved cotton shirt and sunscreen. I’ve had enough accidental sunburns in my life to be more careful now, especially with the increased risk. Sometimes I will wet a cotton bandana with cold water and tie it around my neck to help me stay cool.

Thankfully, the intense heat of the summer only lasts about three months in British Columbia. By early September it’s usually cooled down a fair bit and we get the rain we are famous for, which makes things much more tolerable. I’m already counting down the days. Is it autumn yet?


Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.


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