Hot Girl Summer with Chronic Illness

Last Day of School, First Signs of Summer

The day I wrote this was the last day of school for two out of my three kids. If we still lived in Texas, that would mean heading straight to the pool—because by now it’d already be in the upper 90s or low 100s. But here in Georgia, it’s a breezy 77 degrees, so instead, we went to a party with a water slide and water balloons hosted by some friends.

Of course, with fun in the sun comes my body’s not-so-fun reaction: vertigo-like symptoms, thanks to heat intolerance and trouble regulating my body temperature. Last summer, my daughter and I were out shopping, mostly walking short distances from store to store. We made it to Barnes & Noble, and within minutes, I was on the floor—flat on my back, Withings blood pressure cuff strapped to one arm, sipping salt water from my tumbler.

My blood pressure had spiked into hypertension territory and then plummeted to slightly below normal. My heart rate shot up to 140 bpm, and it felt like my heart might beat right out of my chest. Some of you might be thinking, “Oh, you must have been dehydrated.” Possibly. But in reality, it was my old pal POTS (Postural Orthostatic Tachycardia Syndrome) coming in hot—literally.

Let me start by saying I’m one of the luckier ones when it comes to POTS (and chronic illness in general). Most of the time, my symptoms are manageable—just some aches, pains, and fatigue. But sometimes? Sometimes it’s the full room-spinning, heart-racing, knock-you-on-your-ass kind of POTS episode.

One of the last big ones happened in our dining room. I was sitting at the table with my family, eating dinner, when out of nowhere, my blood pressure went haywire and my heart started racing. The tilt-a-whirl feeling hit, and I slowly lowered myself from the chair to the floor. Thankfully, my kids are used to this kind of thing. They calmly asked if I needed anything, grabbed my blood pressure cuff, made sure I have water, and then carried on with dinner while I laid there pretending everything was totally normal—because honestly, for us, it kind of is.

In the winter, my POTS symptoms calm down, though the cold tends to flare up other issues. But once it hits 70+ degrees? My body starts overreacting like a teenager whose phone just got taken away.

So, what do I do about it? I try to prevent flare-ups as best I can. I have medication that helps somewhat, but the biggest lifesaver has been keeping a few key things on hand at all times.

1. Salt. I use LMNT in my water constantly. My favorite flavor is watermelon salt, however during the winter the chocolate ones are awesome as a hot chocolate mix with coconut milk and whipped cream.
2. A good water bottle. I, personally, have 2 40oz Simple Moderns for on the go and a 50oz for the house. I like these because they’re easy to clean, dishwasher safe, and are well made. I’ve had mine for years now. I like them enough that I’ve given them as gifts and the rest of my family has one each.
3. A portable BP Cuff. I love my Withings BPM Connect. The cardiologist and I actually did a comparison between it and their monitor (They do it old school) and the Withings reading was basically the same, so I feel good about the accuracy. It’s nice because you can save the readings to their app to keep a log and to compare later.
4. My Apple Watch. It’s easier to access than my BP cuff and while it can’t do BP, it can help me quickly check my bpm. This normally gives me a good idea of how long I have before a full flare.
5. A way to log my symptoms. A notebook with a pen, an app, the notes app, whatever works for you.
6. A good bag to keep everything in. So far, this has been the hardest thing for me to find. Currently, I'm either stuffing everything into a beautiful purse my MIL gave me for Christmas. - Dooney & Bourke Pebble Grain Zip Sac
7. Compression socks. During the summer, they make look a little goofy, but trust me. If we are out walking in the heat or even traveling, these things are life savers. I really like my Wellow socks. I even have some of their compression ankle socks and grippy socks. They're the most comfortable too I've tried too.

Another thing I do is I always make sure to grab a cart if wherever I am has one. It doesn't matter if we are going to the store for literally one thing, I am pushing a cart. This ensures that I have something to grab incase I do start to experience an episode or even just a dizzy spell.

As I said before, I am one of the luckier ones when it comes to having POTS. I have never passed out or fainted during a flare up. I've thought about potentially adding something to help identify me, if that was ever to happen while I'm out alone. If anyone has some sort of medical identification they carry on them that they like, I'd love to know more!

Even if you don't have chronic illness, there are some things mentioned I think a lot of us can benefit from. I hope some of my suggestions help make your summer a safe, hydrated, and fun one.

Are you a spoonie too? What are your must haves for flare ups? Not a spoonie, what do you make sure is in your summer bag?