Sound the alarm. My arch nemesis has returned. No not my monthly cycle. I’m talking about Summer. That’s right folks. Summer is officially here and I for one am NOT excited. Why? Heat is one of my Myasthenia Gravis (MG) triggers. Summer is the pentacle of heat. So for those of us with MG, summer is the start of struggle season. The heat and humidity are brutal. Unfortunately, the season is unavoidable where I live. But I’ve been brainstorming some tips on how I plan to survive summer with myasthenia gravis.
Keep it Cool
The first line of defense is to stay cool. It may be easier said than done. Running the AC nonstop can be pricey but there are some other alternatives that are worth exploring. As heat rises, I will probably start spending more time in my basement because it’s the coolest part of my house. Having energy efficient windows help keep temperature regulated between indoors and outdoors. Also black out curtains are a good defense in blocking the external temps.
My granny bought me a Chillow a couple of years ago and I just used it for the first time last week.. I have the most difficult time going to sleep in general. The heat makes it impossible to rendezvous with Mr Sandman. The Chillow does offer some relief. I’m withholding my official opinion on it for now and will wait until I use it for a couple weeks before I give my review. They aren’t super expensive but I hate wasting coins. If you’re interested in trying a Chillow-ish solution, I recommend maybe doing a makeshift one by putting a cold compress in the freezer and covering it with a pillow case. Heck I’d even try tossing my pillow case in the freezer and putting it on my pillow before bed.
Staying cool doesn’t just mean externally. Ingesting cooler items will also be apart of my survival plan. In general I’m not the biggest fan of cold cuts but eating cold meals like sandwiches can be helpful and who doesn’t love a nice frozen treat (did someone say Slurpee?).
As the sun and summer are my sworn enemies, I’ve found that staying inside is key to surviving summer with myasthenia gravis. Find yourself a good indoor hobby. I love to paint and draw. Those are things I can do while sitting down and remaining cool. I also plan to explore my DIY side a bit more. You will find a way to get creative and beat boredom. And if all else fails, a binge watching session courtesy of Netflix, Hulu or Amazon can keep you busy for a few days if not weeks.
Don’t get me wrong. I’m not a complete hermit during the summer. It doesn’t necessarily have to be my house. I’m open to doing activities at someone else’s house (as long as they have AC). Other options could be a marathon day at the movie theater (who always has the AC on brrrrrrr) or maybe even trips to museums.
Sunset Outdoor Festivities
If I must go outside this summer, 8/10 times it will be after 7pm. I will wait until the sun is starting to go down before I leave out. This includes all functions from cookouts to amusement parks. I’ve been implementing this tactic for the past few years so most of my friends and family are used to it and don’t expect to see me during peak sun hours. It’s a giant joke that I’m allergic to the sun and heat. They can joke as much as they want. Just know know if the event is outside, Morgan will be late.
A note on outdoor activities, FOMO (fear of missing out) is real and so is the guilt for not being able to participate in certain things with your friends and family. I’ll discuss my experience with that in another post. Just know I’ve learned the hard way about setting and following boundaries when it comes to summer with myasthenia gravis.
As far as my summer with MG wardrobe I’ll be following the wear less to go out more rule. Basically loosely, flowy, lightweight and light colored garments will be a staple for me. This aligns well with my desire to be more boho chic style anyway so I can’t wait to upgrade my wardrobe.
So that’s how I plan to survive this summer with MG. No year will ever compare to the first summer that I was diagnosed. I refuse to ever put myself in that situation again. I know I won’t be able to 100% avoid the sun or summer unless I move to some place like Alaska. But this plan will help me reduce my exposure and my likelihood of flare up or crisis.
What are your methods for surviving summer with myasthenia gravis ?