Is it possible to be jet lagged traveling to and from a city that is in the same time zone?! On the same coast? Well, either way, I’m going to blame this exhaustion on that! I’ve been home for 2 days now and I’m still coming back down to reality. This is the second time I’ve attended the Dysautonomia International Conference, and I am certain that it will not be my last. It was amazing, informative, inspiring, gut wrenching, and everything in between. But, I don’t want to get ahead of myself here. Let’s set the stage for this epic adventure:
My mom, dad, husband and I traveled to DC from Maine to attend this conference. From the get go, the trip was riddled with hilarity. We almost missed the plane, and not because we were late to the airport, no, because we were eating in a restaurant directly across from our gate and all 4 of us missed the boarding call announcement, oops! Then, we arrived in DC, gathered our bags and stood outside in the 100 plus degree heat waiting for our hotel shuttle…that never arrived…because as we reread the flyer we learned that the shuttle only runs from the OTHER DC airport, opps! Then, our taxi was an old worn out Prius that had no steam to make it up hills. We would go from 65mph to 30mph the second a slight hill popped up. It was a lonnnnnng ride, and needless to say, $56.00 and a seemingly lifetime of hours later, we were READY to arrive at the hotel. We had a delicious dinner and hit the sack early so we could spend the whole next day exploring DC…or so we thought…
For those of you who read my blogs, or have POTS/Dysautonomia yourself, you may already see what’s coming next. I gave a little hint before when I said the heat was over 100 degrees…that type of weather and a POTSIE do. NOT. mix. But, I was bound and determined (some may say I’m stubborn!?) to explore DC and have fun with my family. It started out perfectly…and ended with me throwing up in an Uber….yes, classy, I know. We started the morning by hopping on the metro for a promised 20-minute ride to the city. Well, that turned into much longer as there was a fire on the tracks and all trains were frozen in place…and hot…and I was freaked out by being underground with fire…and hot…did I mention hot?! Once we made it to DC we walked the National Mall, saw the Washington Monument, the WWII Memorial, and made our way to the Lincoln Memorial, we saw a Trump impersonator doing Yoga (hilarious!), the Korea Memorial, and ate Italian Ice …it was gorgeous but very, very, very hot! By the time we wound back up to the Washington there was no shade left on the path. It was roughly 106 degrees with humidity, and even after *trying* to stay hydrated and on top of things, my body gave up. I couldn’t go on. I took my vitals…my pulse was 175 and climbing. I could feel my heart beating throughout my entire body. Part of POTS is the inability to control body temperature, so even though I was sweating, I felt hot then cold then hot again. I was dizzy and panicked and thought I may be having a heart attack. It was awful, and embarrassing, and scary. I felt terrible for my family being stuck there with me in that condition…I couldn’t walk to the metro stop even though it was in my sight, we were so close, but I couldn’t do it, so the options were 1) call an uber or 2) call an ambulance…honestly, at the time, I would have taken the ambulance in a heartbeat. Paul got the Uber and loaded me into the backseat. Bad idea. It was cramped and hot and I just couldn’t get my body to calm down. My mom was rubbing my head, putting cold water on my neck, but nothing was helping. I tried to close my eyes, it made it worse…but with my eyes open the light sensitivity made it feel like I was being stabbed. There was no winning, no way out, and then I threw up. Yes, ladies and gentlemen, right there on the DC turnpike, I opened the door and threw up. Humiliating does not even begin to explain it. Thank goodness my mom told the Uber driver to pull over! We made it back to the hotel where I doped myself up on medication, Paul had to hold me up to take a cold shower (very romantic, ugh!), I forced down some water and some food, I cranked the AC down to 64 and slept the next 12 hours.
I woke up feeling better, but still not well. How could I let this happen? How could I do this to myself?! It was too much. I pushed too hard. Why do I do that? It was a morning full of self-hate…and then I went downstairs. There really is nothing that can compare to being in a room full of people who get it. They feel it too. Not just the symptoms, but the mental anguish that comes with a chronic illness. They just get it. From that moment on, I felt better. I was kinder to myself.
The conference was amazing. The information about the most current research (auto immune connections, genetics etc) was so inspiring. It gave me hope. We learned about the importance of properly taking care of migraines and sleep (two of my biggest challenges!) so I’m anxious to put some of that information into my treatment plan. We met doctors, patients, and caregivers. We saw POTS service dogs that sense when their owner is about to pass out…the dogs keep them safe in this event. Amazing. Again there were people who were wheelchair bound unable to live alone to people who hold full-time jobs that manage their symptoms daily. It’s such a wide spectrum when it comes to how this illness affects people. It’s such a sad, unfair, down right shitty way for us to all be connected, but I wouldn’t trade this group of people for a million bucks.
Bottom line is, I learned a ton, met some amazing people, laughed harder than I have in months, saw the light bulb going off with my husband and father as they tried to understand more deeply (my mom already does!) and had an absolutely unforgettable time. This conference is life changing….and we will be back!