LindsayI love traveling. I mean, I LOVE traveling. Ever since I was 15 and ordered my first Guinness beer from a bar in Ireland (and by “beer”, I mean water, mom and dad), I have been hooked. I traveled to France at 17 for a foreign-exchange program, and lived in the Czech Republic for six weeks when I was 24 for a law school study abroad program. In between, I managed to visit a handful of other countries, and numerous U.S. states. I have been fortunate enough to see some amazing places and meet inspiring people all over the world. However, while I love to travel, dysautonomia certainly does not.
I generally avoid getting on a plane if at all possible. However, I needed to travel last weekend, and unfortunately the BF couldn’t come with me. My last flight with the BF went better than expected, so I thought I’d be okay on my own.
Man, was I wrong.
Because my dysautonomia can cause problems with low blood volume, I usually began overhydrating a few days before traveling. I already drink a lot of fluids, but I upped it by about 50%, especially since I was traveling to the desert (and, as you know, heat and POTS don’t mix).
On the morning of my flight, I got to the airport, checked my bag and headed for the security line. Unfortunately, the line was extremely long. My week was already off to a bad start after collapsing in a dressing room a few days earlier. I struggled to stay upright while slowly making my way to the front of the line.
By the time I reached the front, I was dizzy and lightheaded, but relieved I would be able to sit down soon. Except, the security conveyor belt decided to break just then. And I was stuck standing, waiting for TSA to fix it. For a long time.
Finally I made it through the metal detector and was asked to stand to the side for a female pat-down. I was wearing a long skirt, and apparently that earns me a free ticket for TSA groping. Awesome.
At this point, I had been standing too long and stumbled to the gate like I was drunk. Fast forward about an hour, when in mid air, the plane hit some turbulence. This seemed to trigger an adrenal response, because my heart rate soared and I became extremely dizzy – dizzy enough that I couldn’t even tell which way was up. This continued for the remainder of the flight.
As expected, it was quite warm in the desert, which complicated my visit. I was okay for the first day, but the second day I woke up with a horrible headache. I took numerous naps and ended up sleeping for more than half the day. The heat made me weak and tired, and I felt bad that I wasn’t able to do all the things I wanted to.
- the highs were about 30 degrees higher than where i live 🙁
Unfortunately the flight back home wasn’t any better than the flight there. Flying and headaches do not mix well and I almost became physically ill. For the past week I have been feeling with abnormal fatigue and dehydration since I returned home. Needless to say, the trip did not go well.
After trips such as this, it is difficult to imagine that I will ever be able to vacation, especially internationally, again. If I have this much difficulty on a one hour flight, I can’t imagine intercontinental flights. For someone like me who loves visiting new places and learning about new cultures, the thought of being limited in my travels is devastating. There is a whole world out there of which I know nothing except what I have read in books. To never experience it isn’t really an option.
And this is what I hate about this illness. I don’t want to be stuck inside the condo forever. I don’t want to miss out on life.
In my next post I will discuss what I learned (not to do) from this trip and share strategies for better travels. Friends, do you have difficulty traveling? What have you found that helps?
“Who knows where life will take you. The road is long and in the end… the journey is the destination.”
Stay tuned.
– Linds
So sorry you had to experience that.
thank you!
I “like” for the wonderfully written post and humor… I really don’t like dysautonomia making your trip so difficult. 😞
thank you 🙂
I totally relate to the ‘I don’t want to miss out on life, I don’t want to be stuck in this condo forever’ sentiment. I hope you’re recovering from your trip, I’m sorry to hear it was so hard. Try not to let it put you off traveling if that’s what you love. You just might have to do it in a moderated way, or that’s how I cope with ME and travel at least. One thing I’ve found really helps is using a wheelchair in the airport. I always book wheelchair assistance at the airports so I don’t have the issue of standing in line for ages or having to walk miles to the gate (incidentally why is it that your departure gate is always the furthest one?!). If you’re traveling solo then they have to provide someone to push you. It’s free and they don’t pry as to why you need it, you just call up your airline and they do it all for you. You board the plane earlier than others which means you can get settled slowly and not have to stand up waiting for others to move out of your way. I’ve done it twice now and I’ve found it means you conserve your energy for your trip better rather than using it all up in the airport. I look forward to reading your next post.
thank you so much for your comment! – this is great information! i’m going to include this in my next post.
Booking the wheelchair assistance! Of course last time it still didn’t stop me from having a syncope when going through security I had to get out of chair and walk through and the TSA agent didn’t think I looked sick and wouldn’t return the chair. I went down right there and my husband went nuts on the tsa agent. Still surprised they let him on the plane. At that point I was told I could bring my poweraide or water or Nuun through security. I will have to tell them what it is and they will test it to verify but if needed for medical reasons you can do it.
thanks for your comment, michelle! this is very helpful – next time i’m definitely going to look into getting a wheelchair!
Bless your little heart!!!!! Not fun!!!!! As you know I suffer from MCS– & on a very very limited diet– etc- etc–my husband & I have traveled all of our marriage– but with health problems– we have over the years converted many different types of RV’s into MCS safe homes– & we never travel anyplace that we don’t go in our RV that is my MCS safe home on wheels & with our own food supply & pure water supply– & my oxygen generator & our pets!! We still can take off & go any place we want to go– it just takes longer to get there– & we have learned to take the back roads & see the things you don’t see by plane– or on the main hwys– it has become total new adventures for us– & meeting people that we never would have met– & places we never would have seen otherwise!! We have been visiting old mills & huge natural springs & different places in nature in the Ozarks the past few years– my– what you can see on the back– back roads in the Ozarks– we have had some great adventures!!! You may have to change your mode of travel– & also adjust your sights — & compass!!
Hi Sonda, Can you tell me what kind of RV you have? We have two big dogs and, with all my issues, will probably never travel again unless we look into one… I haven’t traveled since I became sick in Nov 2011. I haven’t left the house in 9 months 🙁
We have a mini home at this time–(because I am older now– & I wanted one that is only 32 ft– so I can drive it & handle it–as we have had bigger ones in the past) but over the years we have had every kind you can name—you have to pick one that meets your needs– & convert it to your use! We can never buy a brand new one because of all the chemicals–I wrote about this on someone else’s blog– I’ll try to find that info & share it!! 🙂
I am so impressed that you even TRIED to do this, let alone actually do some serious travel while having such health challenges!!
“Liking” this seems odd and not the right fit, but I hear ya!
i know what you mean 🙂 i always feel weird “liking” posts where someone is talking about a difficult time that i can relate to.
thanks for the comment 🙂
http://doilooksick.wordpress.com/2013/06/04/readership-award-this-is-for-you/
As a thank you for being such a great reader, I’ve nominated you for the readership award!
We just returned from a trip to South Korea from America. 14 hr ride. Thats just in one plane. . We were very skeptical about the trip but like you I don’t want to miss a once in a life time opportunity. Trip over was incredibly stressful but had my husband for full support. Couldn’t sleep much after we got there. My entire body systems were totally out if sync. Not much has changed since we got back 24 hours ago. It is yet to be seen how this all plays out. I have been fighting my Dysautonomia for 40+ years. I figure its gonna take weeks for my system to reset. Once the planes would level off to a consistent altitude I could begin to relax but any change would reset my system. I would have to start the entire mental process of convincing my body it was not going to implode. Just crazy reactions that had to be mentally worked through. Very draining emotionally.
Dizziness was my biggest challenge right next to no sleep. Fatigue is normal but this will get worse if I don’t start a normal sleep pattern. Well….normal for me that is. My hands were swollen most if the time we were gone. This morning I woke up and immediately had a severe cramp in the calf of my leg. Thats always a good start to the day for those of us with POTS. Immediate uprightness never goes well first thing in the morning.
I feel like my experience could have been better but it could have been a whole lot worse.
thank you so much for sharing your experience! i can absolutely relate to the mental process of convincing your body its not going to implode! although my 1 hour flight was very short, i spent the entire time trying to talk my body into relaxing. you are so right – it is very emotionally draining!
wow, fighting dysautonomia for 40+ years! if you don’t mind me asking, when were you officially diagnosed?
I keep soy sauce packets in my purse. When I start sweating, have facial flushing, get dizzy or nauseous, I drink the packet of soy sauce and drink some water. A tablespoon of soy sauce has around 900 mg of sodium. This really helps me.
great idea! plus, the BF is asian, so he’d probably enjoy an emergency soy sauce packet from time to time as well!