Last week, I was in Point Judith, Rhode Island on the first vacation I’ve been on since Mike’s and my honeymoon in Italy two years ago. So I thought I’d do another traveling with POTS post about our trip and what it’s like going on vacation with POTS and chronic illness.
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Packing for the vacation was exhausting — it always is when packing for trips with chronic illness. I have a packing method though and it’s essentially “bring everything for every little symptom I might possibly have.” That way, I’m not kicking myself later on for forgetting something and needing to find a pharmacy in the middle of activities. Or just suffering and muddling through without anything.
On the first full day of our trip, I struggled with POTS symptoms a little. Okay, a lot. We accidentally got locked out of the beach house, so because we didn’t have a bathroom, I didn’t drink a lot of water. And no water meant no electrolytes.
So because I got dehydrated in the morning and early afternoon, I was pretty much ruined for the rest of the day. I felt exhausted. Even when I chugged electrolytes after finally regaining entry to the house, I felt zapped of my energy. And all day I kept blacking out when I stood up, which is never fun. So I gave up and took a nap to rest.
But I woke up feeling worse. I drank more water and more Liquid IV hoping that would help. But after dinner, my lack of energy transformed into a lovely migraine. Giving up on the day, I took some Advil and went to bed early to hopefully sleep it off. I slept from 9 p.m. to almost 7 a.m.! But the extra rest worked; I woke up migraine-free. Phew!
The next day was cool and a little rainy, but I had to work remotely from the house so I didn’t miss much that day.
On Tuesday, the weather wasn’t much better. In fact, it was worse. It poured a good half of the day and still was cool in the low 60s. We made the most of a rainy day though and drove the forty minutes to Newport to tour a couple of the super fancy mansions.
We bought tickets where you’d get entry to The Breakers (one of the Vanderbilt mansions) plus entry to another mansion of your choice. We picked the Marble House as our second house tour.
As we walked through these opulent houses that were referred to as summer “cottages,” I couldn’t believe that people actually used to live there. Both of the mansions had grand staircases in equally grand entryways — could you imagine walking down those every morning to get your cup of coffee and breakfast? Mike quickly corrected me by saying they probably never did and had someone bring their coffee to them in their rooms. What a different way of living!
If there are any fans of the Gilded Age show on HBO, you might find it cool to know that some of the show was filmed in The Breakers and The Marble House! I took pictures of the rooms to see if I could recognize them if I went back and rewatched the show.
After a wet walk in the rain around the mansions’ grounds, we stopped to get some lunch in Newport and then popped into a few shops to look for souvenir sweatshirts. (Because we were wet and cold from walking around in the rain. My sandals had completely soaked through!”)
Wednesday and Thursday we finally got beautiful, warm weather, so we spent those days at the beach.
Surviving beach days with POTS is a whole other challenge, so I’ll probably write a blog post dedicated to that. But my most basic tip is to be prepared and bring with you all your usual ways to beat the heat and stay cool. Remember, heat can be a top POTS trigger! But that doesn’t mean we POTSies who love the beach need to give up our beach days in the summers.
Stay hydrated, stay cool, and stay out of direct sunlight for long periods.
Spending two days on the beach, just sitting and relaxing with my feet in the sand, people-watching, snacking, beach walking, and reading a book that I was absolutely engrossed in (Every Summer After by Carley Fortune) was just what I needed.
I didn’t even realize how much I needed to get away and go on vacation until I was in the middle of it. It felt like a respite from life back home and everything I’ve dealt with in the last year. During that time on the beach, none of it existed. I wasn’t scared. I wasn’t sad. I wasn’t stressed. I was present. I was content and at peace with myself. I smiled and laughed a lot.
I still felt my mystery right-sided rib pain most of the nights, but I tried my best to ignore it. I knew as soon as I got into bed and fell asleep that it would go away once I woke up. And it did. (I still can’t believe no one can figure out what is causing this pain! Being undiagnosed is so frustrating!)
On Friday, our final full day in Rhode Island, Mike and I decided to do some more outdoorsy things for most of the day. Our first stop was Fort Wetherill State Park in Jamestown. The lower-most part of the park has some walking trails that go right along the water, which gave us some really pretty views of the rocky shorelines.
The upper part of the park is the remains of the fort that you can walk around and explore. It’s all heavily graffitied, which can be cool or annoying, depending on your view of it. (It’s definitely not the most appropriate for kids if they can read!) There are also points you can pop out on the rocks to see the water and snap some gorgeous pictures.
For lunch, we decided to stop in town and grab some sandwiches and coffee to go. We took our lunch to Beavertail State Park, which has a lighthouse, and found a spot on the rocks to look out over the water while we ate.
As Mike said, it was stupid pretty. I said it was idyllic. Our view really should have been on a postcard.
We’d only been sitting there for a few minutes when we spotted a sailboat with a cool sail come around the point where the lighthouse stood and into view. Seconds later, another boat followed. And then another. And then more and more.
As it turns out, there was an annual regatta scheduled for that day! And we just so happened to pick this spot for lunch at the exact time that they were all sailing by. What serendipity!
We finished our sandwiches and watched the sailboats glide by over the water one by one. It was cool to see the people on deck work fast to change the sails or adjust them to avoid colliding with a passing sailboat or change direction quickly. And of course, I took way too many pictures. (See one of my favorites below.)
After that, we finished our day with another coastline walk at Black Point Fishing Area, back between Point Judith and Narragansett. This spot had awesome views of the ocean and more of the rocky shoreline that I love to look at — and take pictures of.
I managed to get over 12,000 steps that day with all the walking we did. Somehow, despite my stamina suffering after my recent endometriosis surgery, I survived that — although, I did take a nap and got off my feet before we went to Black Point. Will I pay for doing that much in one day? Probably. Will I learn from it? Probably not. Lol!
With some of the most delicious ice cream from a place called Aunt Carrie’s after dinner (I’m seriously still thinking about this ice cream), we ended the night with full bellies and our trip came to a close.
Overall, this trip to Rhode Island was really good for me. Maybe you can relate, but as someone with chronic illness and some health challenges at the moment, traveling is anxiety-provoking.
I was afraid to travel so far from home, away from my doctors and my hospital with all my records. What if something happened to me while I was away? Sure, there are doctors and hospitals everywhere, but it’s much easier to deal with emergencies at home.
And what if I felt bad the entire trip? What if I felt guilty about needing something and messing up a part of the trip for everyone else? What if I had a complete meltdown about my symptoms and wanted to cut the trip early and go home (and again deal with guilt)?
I could go on with the what ifs.
I finally had to drill into my brain that I was thinking in what ifs and not what is. (What is’s?) But since my brain was so tuned into what ifs, I started thinking, what if you are fine? What if you have a great trip and an amazing time? What if you enjoy yourself? What if you’re prepared for everything you might need and you’re able to handle any challenges that come your way gracefully?
This perspective change helped me. It seems like my healing journey lately has focused a lot on changing my perspective, trying to see things from a more positive angle, and appreciating exactly where I am in life. It’s not easy, but since I’ve decided that I’m on a mission to truly be happy and find joy in life again after everything I’ve been through this year, being more positive is kind of necessary.
And taking more trips to relax and just have some fun is necessary too. Even if it’s just a weekend trip or a short day trip.
I’m finding ways to refill my cup and get back to feeling more like myself, at least emotionally and mentally. Hopefully, the physical symptoms will sort themselves out in time. Until then, I’m grateful for this vacation and looking forward to the next trip — we’re going camping in August!
Where are you planning to go this summer? Does traveling with POTS or other chronic illness make you anxious or do you love it and look forward to the time away from “normal life”? Let’s chat in the comments!
XO,
Laurie
