Last week I went away for the first time since I got sick in 2011. I was so nervous. I was flying across the country and staying with people who I know pretty well, but not well enough that they are aware of the full extent of how sick I get from autonomic dysfunction on a frequent basis. I knew this was going to be a challenge. I was going to need to try to hide my symptoms for an entire week 24 hours per day.......that's nearly impossible when your BP is 0, your heart is flipping out, and you're breaking out into sweats.
The first obstacle was getting through security with a pacemaker. It's MUCH easier than I thought! They checked me less than they did those without pacemakers. I stood in a machine and sometimes they pat you down, other times they don't. It depends on the airport.
Another issue was liquids on the plane. I mainly take all heart/BP medications right now. A beta blocker for my fast heart rate, midodrine for low BP, Plaquenil for Lyme, and Mestinon......my liquid. Mestinon is the one I've been relying on the most lately for low BP. I packed it in my checked luggage because it was over 4 ounces. It exploded in the bag. Likely from pressure we think. So I had to go an entire week without it. I made it, and I had fun, but it was not easy. I went off all my herbs because they weren't easy to pack and I didn't want to be forced to throw them out at the gate. I was also in the 3rd week of Plaquenil.......a notoriously bad herx week for me.
Other people don't know my triggers for dropping BP. Eating is one of them. So several times we were all going to go out to eat and I'd be internally panicking because I knew I'd have to make sure that I ate only protein or salad or I could have an issue in the restaurant where my BP dropped out. The food was very good though! They had gluten free pizzas, sandwiches, huge salads, sugar free frozen yogurt, etc. It was like heaven for a Lyme diet. Of course every night I'd wake up regretting that I ate. I'd literally be vomiting all night long from a BP of 0. Many times I had to crawl across the floor to my med bag and lie on the floor guzzling electrolyte water and midodrine tablets until it raised back up enough for me to stand.
I did a LOT of running and walking while I was there. That's actually the best part about this destination. Cars are not allowed inside the town so you have to walk everywhere or take a bus. I opted to walk. I ran up to the
photo location almost every day. It was beautiful and it calmed my mind and worries.
The town sold oxygen in every single store. It was like a spray paint can with a mask on top to be used for people experiencing altitude sickness. Surprisingly, I didn't feel any effects from the altitude. I think it's because I'm used to feeling sick every day. I wouldn't even notice altitude sickness because my autonomic dysfunction and Lyme symptoms are a lot worse.
I felt crappy MANY times and was crying just wishing that I could feel normal so that I could fully enjoy the beautiful place I was visiting and may not ever get a chance to go back to. However; I'm very happy that I went. It was a beautiful place and even though I was sick several times, I would have been just as sick if I was home.