POTS Heat Survival Hacks

Survived Creation Fest, which is our summer adventure 1 of 3. Two more to go! Here are my hacks to surviving a 5 day outdoor music festival with lots of walking, heat, humidity, and camping…or really even just walking from your front door to your car (let’s be real).

#1 Buy. Instant. Ice. Packs. Seriously, Target has them, CVS has them, Walmart has them, get them. They are fantastic for cooling down in the heat, icing areas that are in pain, and lowering inflammation. Which are all much needed things even at home!

#2 Portable fan, bonus points if it’s one of those that spritzes water at you. Actual lifesaver.

#3 Ice necklaces and cooling neck wraps. Drench them in water and keep them in your cooler. I have two of these cooling necklaces by Nano-Ice and I also have about 10 regular cooling neck wraps. Great ideas to stay cool.

#4 Cooler backpack. Emphasis on the backpack for those of you that have nerve pain in your fingers and carrying something causes you intense pain…here’s the one I purchased from Target for S20! It was originally $45, but I got the last one Target had for more than 50% off! And it was a huge lifesaver during the trip, I would keep ice packs, drinks, cooling necklaces, and my fan in the backpack and replenish it each morning at our campsite before we headed down to the festival.

Once I overheated though, that was it. I was unable to cool down at all and my body was shutting down and I couldn’t function anymore. So that’s when I had to get into my car with the AC blasting. Or if we weren’t near my car, my fiancé would pour water all over me and use the fan to try to cool me down. There were heart episodes I had during this trip where every part of my body went numb and I was genuinely freaking out because my heart rate was going from 48BMP to 178BMP and back again. So if you have a heart condition, or thermoregulation issue as well, take self care seriously when you are out and about, and make sure you are preemptive with taking care of your health.

I hope this list helps you! Pray for me as I have 2 more outdoor trips this summer!

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Living with POTS, etc.

I wish I could love summer. I grieve the things I can no longer do because they are now a recipe for disaster for my body. I miss being able to hike and enjoy the great outdoors. Although heat and exercise has always been a trigger for my EDS and POTS, it has never been as bad as it is now.

Now I can’t be outside for too long before my heart starts freaking out and I completely lose feeling in my entire body. It uses to just be that I lost feeling in my toes and fingertips but now it’s my entire body. Which is scary. It’s scary to not be able to feel anything, especially my face.

What’s worse is how my body responds to sudden changes in temperature. I cannot go from an icy AC blasting house to outside if it’s anything above 72°F and vice versa. I almost need to be stuck in a temp controlled bubble at all times.

I need to move somewhere where there’s 0% humidity and it’s never anything but 68°F year round. That would be best for my heart and my pain. I can’t imagine not being in pain everyday and not having all of these other issues everyday. It would be so refreshing.

But alas, that’s not the case. And I live in a humid climate that hates my joints and my heart. So I need to combat these environmental factors with preventative measures. Things like cold necklaces and making sure I stay on top of my 4 different heart supplements and my nerve pain medication. I need to be making sure I’m honest with my doctors about what I’m feeling and new symptoms so they can help me with new treatment plans.

I need to advocate for myself first and foremost and make sure I am doing everything I can to stay on top of my body because no one else is going to do it for me. Not my fiance, not my friends, not my family. No one is going to advocate for me the way I can advocate for me. I know what brings a heart episode on, and I know how to avoid it (for the most part). I know what makes my pain worse, and I know how to avoid it (again…for the most part.) I need to look out for my own health.