Okay, so our last post was basically all about our recent trip to Europe and all the activities and traveling we were able to accomplish. It showcased the triumphs and we purposely left out the struggles but let us assure you…they were most certainly there. It’s easy to take a smiling photo and look like we feel amazing, but the reality was it was hard. It’s doubtful that we will attempt to fit in as much as we did in such a short period again (as we are still recovering!) but we really did have a wonderful trip together. We wanted to show some more insight on what our trip really looked like – Instagram VS. Real Life.
Our rheumatologist told us years ago that flying would basically be three times harder on our body than a ‘‘normal person”, so we usually get a fair amount of anxiety heading into a big trip such as this. We try to be prepared as much as possible by being super hydrated, having a lot of rest under our belts heading into the journey, and bringing tons of healthy & salty snacks in our bag.
Then, the unexpected happened. In our last post, we mentioned that a man passed away on our first flight. He was a man in his mid forties traveling with his wife and two small kids. About 4 hours into our flight, out of nowhere, he clutches his chest and falls down into the aisle (they later let us know that he recently had surgery and his death was most likely caused from a blood clot). Both of us have never witnessed something like this before and it was devastating as well as surreal to watch. Because of this unexpected tragedy, we missed our connecting flight to Edinburgh and spent the night at an airport hotel in New York. We then arrived in Scotland a full 24 hours later than we originally planned (our mom is from Scotland and we stay with our uncle when we’re there).
We were both incredibly shaken from what we saw, exhausted from the extra day of traveling, and running on pure adrenaline at this point – not great for those with dysautonomia!
Since we were only in Paris for a short amount of time, we had that unspoken pressure of trying to fit in as much as possible to take full advantage of the trip. One of the sights we wanted to see was the Arc de Triomphe, which supposedly has the best views of Paris (once you reach the top of it). Well…little did we know that there wasn’t an elevator to the top – there was only a (seemingly) never ending spiral staircase, basically a POTS nightmare. It’s safe to say that if we knew this heading into the day we might not have even attempted it, but because we had absolutely NO CLUE we had to climb to the top, we naively entered the monument. It took us probably 10 times longer than everyone else to get up there. We kept having to stand to the side (which is super narrow & isn’t really a side) to let everyone behind us pass. Our legs felt like jelly and we were seriously huffing and puffing but we eventually made it – we kept joking that we felt like Hazel from The Fault in Our Stars when she climbs the stairs in the Anne Frank monument! After, we had to sit for about an hour to get our heart rates to return to normal, but we felt super proud of the accomplishment nonetheless. There were plenty of times last year where we couldn’t even climb a flight of stairs so this felt like a HUGE milestone.
Side note- once we were at the bottom we sadly found out that there is in fact an elevator for those in need on the other side – shall remember that for next time.
The next major struggle we encountered was a few days later when we got to the airport around 8:00 pm for our 10:00 pm flight back to Scotland. Both of us were already feeling horrible at this point – our POTS symptoms were in full force and we actually both had to go into the airport bathroom and pull out clothes from our suitcase to change outfits because our bodies were working so hard we completely sweat through what we were wearing. This was the ‘‘busy” part of the trip so our mentality was ‘Okay almost there, we’re almost back in Scotland (which is basically our home base)’. That’s when they told us our flight was cancelled. We didn’t discuss it in the last post, but we were crashing at this point from all the chaos and activity. It felt like a full on you either laugh or cry moment. We were basically sitting on the airport floor unable to move for hours, slumped over each other while an airline employee was trying to figure out how to get us home.
Kate: We left the airport at midnight and went to a hotel that was being compensated for and that was down the road. We had to be back at the airport at 4:00 am in order to secure our seats on the flight so it was almost pointless to close our eyes. I think I was able to get about an hour and a half before my phone alarm started beeping. My adrenaline from the stress was so bad my body felt like it was buzzing.
Em: Our first night in Belgium we were getting a quick bite to eat and I literally had to lie down in a restaurant because I knew I was about to blackout if I stayed sitting. An employee brought me ice and panicked that something was really wrong, but I knew my body just hit a wall and it was telling me I needed to stop.
We’ve been back for a little over a week now and we both been struggling with fatigue, muscle pains, and general malaise. The trip was amazing and we feel so so so grateful we got to experience what we did, but we don’t want to post a false representation of how hard it actually was. Some days we hardly left where we were staying, plans had to be cancelled last minute, and more than one dinner reservation was missed, but undertaking such a journey can’t help but feel like a BIG accomplishment.