My summer tricks to tame MG and heat intolerance
MG and summer heat are not friends, but these tactics helped this columnist
I’ve never understood how other people with myasthenia gravis (MG) can live in warm climates. One of the things that exacerbates my MG symptoms the most is heat. This summer, I’ve taken it upon myself to use all the tools I’ve acquired over the last 10 years in an effort to enjoy a season I once loved.
Summer used to be my favorite time of the year. Before I enlisted in the Army, I was a lifeguard at a lake. I spent all day, every day, in the sun and loved every minute of it. Later, while serving in the Army in Iraq, the “dry heat” that often surpassed 120 F did little more than make me sweat.
But in the summer of 2010, my health began to fail and my heat tolerance changed. No one knew why. It took years to determine the culprit — myasthenia gravis — and understand why heat had become my enemy.
Cool runnings
For the past few years, I’ve been a hermit during the warmest days of summer, typically in late July and early August. Because of heat intolerance, I’ve missed out on family functions and traditional summer celebrations. I’d been trying different techniques to help me better tolerate the heat, and this year, I finally seem to have found something that helps. While the heat still sometimes affects my symptoms, I have a better understanding of it now, thus more control.
The first step is to stay hydrated, which helps the body function at its best. My body can better handle the stress the heat causes it if I’m not fighting dehydration, too.
Another tool that helps is receiving proper treatment for my particular case of MG. Having a care team that listens to me and understands that I don’t ask for things I don’t need has been a game changer in terms of tolerating the weather. For example, my care team trusts me, so they adjusted my medication dosages this summer, which has been helpful.
During the day, I’ve also needed to use my BiPAP machine for breathing support due to air hunger. I change the air pressure on the machine to different settings depending on whether it’s day or night. My respiratory therapist might not be happy with me for changing the settings, but I’m working with my neurologist to either get a new device that can store different settings or a second device that I can use during the day.
Another tool I’ve been using this summer is a cooling vest that I modify. When I used it with the ice packs that came with it, it was big, bulky, and uncomfortable. It really wasn’t made for a well-endowed woman like me, so I generally avoided it.
Then I had an idea: I filled snack-sized plastic baggies with ice cubes and put them in the slots of the vest where I needed them most (three to the right of my back around my diaphragm, and one under each breast).
The biggest game changer for me regarding heat tolerance was realizing that I can take the tools I have and make them work. I still have to remember to use them, but when I do, I can tolerate the heat for at least four hours at a time, instead of not at all. I’ll take it!
Note: Myasthenia Gravis 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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Comments
Kenneth Spencer
Simple obvious things like a cooling fan and a de humidifier is all I need . Keep windows open and room ventilated
Siobhan Marshall
Absolutely, those things work bands, even putting ice in a Styrofoam cooler, then Placing a chargeable fan on the top that blows the air out of a simple tube, similar to the paper towel roll then Placing ice. Referring to more solutions that we can go and take apart an outdoor joys that this world still has to offer, and for MG patients are grandchildren and children, and those we care about take their downtime and enjoy time on summer vacations, the rest of the time is busy making those times possible. But we do have Christmas another occasions that do fall on times that we are able to take part if everything else that affect us is doing well. It’s all about being prepared and together, we can prepare each other, rather than people waiting two or three years till they come up with the common denominators that again is their own unique disease to MG.
It’s hard enough just simply realizing what it is we have and the effects it’s sad on ourselves and others and how that’s going to change going forward as the symptoms become for you to live.
I love that you only need the fan in good ventilation in your home, and perhaps everyone comes to you and you don’t have to go outside of your home or for that matter, I have the higher temperatures air conditioning in your car, perhaps!
Anyways, I love what was started in the conversation as it allows other people to fill their toolbox. Her words were profound.