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!

Here’s the thing..

Here’s the thing about chronic pain, at least for me….

24/7 I am constantly in some level of pain. All the time. However, there are flare ups, there are days it is significantly worse, days where it’s not as bad, days where the pain is targeted in different locations in my body, and days where it’s worse because of too much use from the day before.

So most of the time my constant level of pain is at a 5 (on a scale of 1 to 10), which is completely manageable for me. But imagine never having a break from that moderate level of pain, and occasionally having days where it’s unbearable, it starts to wear you down.

Which is where I’m at today. Today I tried to do things and ended up back in bed frustrated by how much pain I’m in because it’s at a level that isn’t possible for me to work on my list of things to do. So I broke down crying. Not necessarily because of how much pain I’m in but because I’m frustrated that I have a day off of work and I can’t physically get out of bed.

Wanna know what I did to cause a flare up of intense pain today? Yesterday I worked a full day, stood most of the day from 7am to 9:30pm, walked around with my dog and we did a small run that was maybe 100 feet. Nothing crazy, yet here I am unable to get out of bed.

I need to allow myself to rest and recuperate without mentally beating myself up over pain.

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.

Life with Chronic Pain

I am in pain every single day. Some days are worse than others, some days I only notice it if I decide to stand up for more than a few minutes. But every day to some degree I’m in constant pain.

I’ve had doctors say they don’t believe me, tell me I’m just looking for drugs. I’ve had doctors tell me I’m too young to be in pain. I’ve had doctors tell me the pain in my spine, the spine I’ve broken numerous times, is made up. Even though there’s imaging proof for the pain slipping into my spinal chord and a fracture that didn’t heal well…the pain is made up.

But the other day a doctor listened to me. And now I’m starting on medication to help not just my nerve pain but also my musculoskeletal pain as well. To say I’m overjoyed about this would be an understatement.

My pain causes me to lose patience with my ability to function, it causes me to be easily irritable, and sometimes it becomes too overbearing and can’t help but just sob for awhile. I get extremely upset with myself because of how much I hurt on a daily basis.

But a doctor listened to me. She listened to me about my mental health and the concerns I have with my current medication regimen. She listened to me about my ehlers danlos. She listened to me about my heart diagnoses. And I felt heard. For the first time in many years, I felt like a doctor actually cared. I felt like she was on my side.

I am so excited God put this doctor in my life. And I’m thrilled to start this new medication. I’m looking forward to minimal pain days and I couldn’t be more excited.

If you’re living your chronic life desperately seeking treatment and someone to listen to you…don’t give up! Good doctors are out there…they’re just hard to find sometimes.