Up in the Air

IMG_3743

Aruba was amazing. Getting there was awful.

** Disclaimer: This experience is mine and mine alone. The following story is based on true events that may or may not be true of other Potsies. I do not claim to speak for anybody else.**

So let’s recap my posts thus-far. What is POTS? POTS is the body’s inability to regulate changes in blood pressure and pulse due to a malfunction of the autonomic nervous system. What is turbulence on an airplane? Pressure change.

Putting two and two together, what happens when you put a Potsie on a turbulent airplane? Said Potsie does not become nervous on the plane because said Potsie has flown many times before. This being said, the Potsie has not flown since her POTS has come out of its shell, so to speak. So, combining a person with very little ability to regulate pressure in her own body, and significant pressure changes around her, this Potsie’s body will have a VERY difficult time remaining upright.

If you couldn’t tell from my ranting, that Potsie would be me.

I recently went to Aruba with my family and it was a wonderful time! Ask me about it if you want details of the trip! What I want to discuss now, though, are my thoughts on flying with POTS.

I’ve never flown with POTS before, so this was a new adventure.

Flying down to the island was relatively okay. I only blacked out and lost my vision a little bit during takeoff and landing, resulting in me crying twice and struggling to stay conscious. That was a walk in the park compared to the return trip.
IMG_3803I started out the trip by having anxiety issues at the airport. That’s when the POTS started to go downhill. So we got a wheelchair and whizzed through security. Great. We waited at the gate for about four hours, during which time I donned my compression garments. Waist- high tights and full-length sleeves. (Keep in mind, this was Aruba…… hot to begin with, made hotter by my new fashion statement.) We got on the plane, which I was dreading to begin with, after flying down and blacking out on takeoff and landing, and I sat down in my seat. I immediately started crying…. We hadn’t even moved yet.

We took off…. I blacked out again. I was still wearing all of my compression gear, chugging my NormaLyte, and squeezing every muscle of my body, fighting to stay conscious.IMG_3807

We got into the air and the turbulence started. As I stated before, turbulence is a change in air pressure. I’m sorry to burst everyone’s bubble, but those airline cabins are not as pressurized as you might think….. I. Felt. Everything. Every little bump sent me spinning. And chugging. And swelling. And struggling. And crying. And fighting to stay upright.

This went on for the entire flight. I was fighting my body for five hours straight. It was all- out war.

Anyway, all of this is just to say that when flying as a Potsie, you should be prepared to tackle your POTS head-on. I didn’t know what to expect from flying and now I know that I love traveling, but flying is not something I’d like to do very often in the future.

Email me at potsienb@gmail.com and tell me about your travel experiences! I’d love to hear how you all manage while everything is “up in the air!”

Fine thanks, and you?

I had an interesting thought the other day: How and why do you condense your story?

When I tell a stranger or even someone I know about POTS and how it affects me, I always condense the story; I rarely share my entire saga of symptoms to diagnosis to now, or even how I’m doing on a daily basis. But why do I do that? Does everyone do that?

When asked, I normally say that I have a disorder that affects me in the way that whenever I sit up or stand up, my blood pressure drops and my pulse rises, making me nearly pass out. Short and simple, though we all know by now, based on reading my previous posts that there is so much more to POTS than just that.

Shortening the story still gets a basic point across, but does this negate the severity of the issue? In my opinion, yes, it sort of does, but not necessarily in a bad way. If you tell a story of a significant or severe health problem, people will often ignore what you are actually saying to them, in favor of offering to help and starting a conversation about everything you’re doing to try to “get better.” In my experience, people retain more information when the story is down-played, to an extent, so that emotion becomes less involved in the interaction and the person asking can become more informed, rather than more worried.

For example, when asked, “Hi, how are you today?” most people respond, “I’m good, how are you?” — BAM- downplayed. The proper response is not “I feel like I may keel over at any moment,” or “I probably shouldn’t be standing right now, but I’m going to stick it out anyway. How are you?” I downplay so that I don’t start a conversation about how the other person can help or what suggestions they can provide…… How do you politely say “You can’t help me, but I’ll smile and nod because no, eating a banana will not make my foot cramps go away and no, I don’t really want to sit down so please don’t make me?”

I think I downplay selfishly- I often don’t want to talk about it when I’m out at a party or with friends and family, so I say I’m fine. I’d be interested to know how many other Potsies do this, too. For the people reading this who know me- This isn’t your cue to start worrying and asking more questions and demand the truth. in fact, it is the opposite. This is just a clarification of why, when you ask, I’ll always say “I’m doing great, thanks. Yes, I’m feeling much better lately.”

So does downplaying POTS negate the severity of it? Yes, but it also takes the pressure and attention off of myself for a bit, so even though I may ultimately be hindering my ability to show people just how severe this disorder is, I’d rather write about it or discuss it on my terms than tell you when we’re out with a bunch of other people. It is a very difficult disorder to have, both physically and mentally, as I’ve shared a lot over the course of writing this blog so far, and sometimes it’s better for me to keep a bit quiet about what’s actually happening, in favor of alleviating some of the focus on my physical problems and the attention that will inevitably be directed toward me if I share what symptoms I am having that day.

I’m not advocating this course of action in any way, just sharing some of the thoughts I’ve been having recently.

If any Potsies are reading this post, let me know in the comments or via email how you handle the question, “How are you doing?” at potsienb@gmail.com.

DysConf 2015: Friday

One day down, two to go, and what a day it has been! 

We got up at what I like to consider the crack of dawn- 7:30 am. My mom and I were headed down here to Herndon, VA for the annual Dysautonomia International Conference, or Dysconf, for short. We left the house by about 8:30, stopping only once on the way down so that I could urinate. Sorry to be blunt, but when you drink this many fluids on a daily (or hourly) basis, nature calls at inconvenient times. 

When we did stop, we figured we might as well get some snacks. There was an “Auntie Anne’s” pretzel place, and we stocked up on salty food and Gatorade, as one does when en route to a Dysautonomia conference. As we were just about to leave the rest stop, though, something unusual caught my eye. 

Pickles. Individually packaged pickles, with their own juice and everything! A strange find, yes, but knowing from past experience that pickles are extremely salty, I had to pick up a package and see for myself what the sodium content was. 920mg for just the one GIANT pickle. And the best part- zero calories! I had to have one. So I did. And you should too.  

So long story short, we got to Virginia, checked into the hotel, went to a random Irish pub for lunch and ate way too much. We then had to go to Kohl’s to find me a sweater because the first floor of the hotel, where the conference is held, is absolutely freezing. It’s truly absurd. I then went to the gym, showered, and we headed down to the bar, where it was fairly easy to tell who was a potsie person and who wasn’t, based on the size of their water bottle.

We socialized, we ate, and we chatted with people some more. I met IAmChronicallyWell, a fellow potsie blogger, and was (and am) totally star struck. We had a moment of “omg I follow your blog,” “I follow yours, too,” which was so cool. (Hi Nicole!) 

Anyway- today has been great. I got to see “my people” again, which doesn’t happen very often. This is probably one of very few places in the world where you can strike up a conversation with someone based on when the last time they passed out was, and I couldn’t be happier. 

Stay tuned for more from DysConf 2015!
   

 

Potsie Strong.

So today has been one of those days… You know, the ones where you wake up feeling pretty good, so you start your day on a high note. You go run some errands, come back home, and suddenly think to yourself, “okay I feel weird now.” Then you get potsie… dizzy, light-headed, tunnel vision, the whole bit.

Then you go for a run.

While I was running to try to make myself feel better, I got to thinking- isn’t it weird that when I feel totally horrible, I go exercise? Most people wouldn’t do that. They’d call in sick or lay down or take more medication and hope it gets better. But I go run… or row… or squat… or push ups….

So that train of thought led me to the concept of strength. Potsie people are incredibly strong. I mean how many people can you think of that would still stand up when they’re light-headed? What crazy person would go exercise through dizziness?

Potsie people have to. We have to be strong in our weakest moments, just to keep up with reality. It’s truly astounding how we continue to do it, even when we feel so weak. We continue to fight.

People have told me I’m strong and determined and resilient, but I think today during my run it really sunk in how not many other people could do what we do every day. This holds true even for those potsies that struggle just to get from the couch to the bathroom and back (I’ve been there, too). Even something as seemingly simple as that can take so much energy sometimes, and it takes a phenomenal person to continue to do that day after day. It takes an inconceivable amount of strength to be a functioning human being.

So enough of my rambling. Here are the take-away points:

Potsie people are amazing. We are determined, resilient, strong, and stubborn. It takes a lot of energy to keep up with daily life, and it takes an incredible person to be able to live with POTS.

PS- Here’s a playlist I think you’ll all enjoy. They’re the songs I currently listen to, to feel like a kick-butt person.

Fight Song– Rachel Platten

Invincible– Kelly Clarkson

Work this body– Walk the Moon

Worth it– Fifth Harmony

Masterpiece– Jessie J

Let it go– Frozen

Thoughts? Comments? Share with me!!

As always, If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS.

Please message me!- potsienb@gmail.com

To all my fellow Potsies, good luck out there!