Wanderlust vs. Reality: When chronic illness makes an appearance during your dream vacation

This past May, my husband and I checked a box off my bucket list. Since long before my chronic illness diagnosis (15 years ago), I have wanted to visit Nova Scotia. Most of my life I have had a weird fascination with Canada, yet I had never been there! At the beginning of May, we rechecked the size of my brain aneurysm and I got the all-clear from the doctor that it hadn’t grown and for right now I could forego surgery. Oddly, considering I still had the aneurysm, I wanted to celebrate.

For some people, tropical islands, sun and sand fuel their excitement. For me, it’s lighthouses, a cold breeze in the air, lush green hilltops, tiny towns, fishing boats, gray skies and choppy, dark blue seas. But like so many of us experience with chronic illness, it never seemed the “right time” to plan the trip of a lifetime.

In fact, planning it was the problem – would my body cooperate?

So, I bypassed the planning aspect, realizing there really is no “right” time when dealing with illness. The reality is life with Lupus or any other chronic illness typically doesn’t involve a lot of preplanning. So, in the middle of May, I looked at Lovebug (a.k.a.  my husband) and randomly said, “Hey, do you want to go to Nova Scotia next week?”

“Let’s do it!” he replied with a smile. My heart leapt out of my chest and by that night, I had scoured Airbnb and Google Maps in order to make our route. We would drive from New York into Maine, then through New Brunswick and east to Nova Scotia. Once we reached our destination, we would travel around the perimeter of Nova Scotia in what would be an incredible 14 day road trip.

This would prove to be the longest trip I’ve ever completed in my 38 years. My body was buzzing with excitement, mixed in with nervousness knowing I would be away from my home…and my medical care.

I  packed a bag and filled the rest of our pick-up truck with food – well, actually my food. Since my diet is a little different than most, I knew bringing my own food would be crucial to keeping up my energy on this trip. Also, from what I could see on the maps, there wouldn’t be an abundance of large supermarkets like we are used to here in the States.

The first twelve days were magical. We reached Nova Scotia just before summer season began, so some of the most popular tourist destinations were quiet and breathtaking. It was still cold, in the 40s mostly, which suited me just fine as I am not a fan of the sun and heat.

Our trip took us to the quaint town of Antigonish, the majestic hills of Cape Brenton, the bustling city of Halifax, the Bay of Fundy, famed Peggy’s Cove, the charming town of Mabou, and the UNESCO site of Lunenburg.

Every day was an adventure as we explored small towns, visited local pubs,  lighthouses, peaceful beaches and marinas.

We met dozens of locals, engaged in sweet conversations and got a glimpse of what life was like in simple yet majestic Nova Scotia. I’d have to say it was one of the most peaceful places I’ve ever traveled to. Many of the towns we stayed in were quite small, with less than 1,000 people. Farms and farmers markets were abundant, everyone seemed to know each other, and people were friendly. Extremely friendly. The first question almost everyone asked us when they found out we were American was whether we were voting for Hillary or Trump! I dodged that bullet by changing the subject ASAP…

Each stop had its own unique charm, but I especially enjoyed Antigonish, and the areas around Mabou, Inverness and Cape Breton.

Mabou was two days of much needed solitude, as exhaustion was catching up with me. We found a rustic cabin with an unforgettable view of Mabou Harbour. We slept, read, and I tried to listen to my body. Fevers were starting to kick in, but I was determined to make it to our last stop, Peggy’s Cove, for the remainder of the trip.

When we finally reached Peggy’s Cove, we made it out one morning to the lighthouse, which happens to be one of the most photographed lighthouses in the world.

The sign on the side of the lighthouse coincided perfectly with the brutal weather that day, it was in the upper 30s, windy and raining. We were warned by a local to stay away from the slick, large black rocks, as it was a surefire way to end up in the water. I could see the tremendous, choppy waves blasting the sides of the rocks, so I was sure to keep my distance. With all of the life and death scares I’ve had from Lupus, I wasn’t about to go out of this world by slipping on a damn rock!

We took what would be some of our last vacation photos and headed back to our rental. It was about an hour later I became violently ill. Chills, shaking, and extreme stomach pain. We somewhat joke in my house that my stomach is made of steel. After all these years of health issues, my stomach never has any issues. But there I was, sweating, shaking and heaving for the last few days of our trip. We blamed it on the egg I had for breakfast. Perhaps I didn’t cook it enough. And, instead of taking a leisurely three and a  half day trip home, we did it in just under 48 hours.

What we assumed was food poisoning or a virus has now turned into a five month flare in my stomach. I’ve had about 15 doctor visits since June, a hospitalization, and a scope and biopsies to rule out all sorts of issues and diseases. For the first six weeks, the stomach pain was so intense, I would just sit in bed and cry. I had to sleep sitting up, and spent most of my days heaving and unable to eat. Finally, through scopes and other tests, they diagnosed me with severe gastritis and IBS. It seems many years of oral steroids and OTC pain killers took their toll on my iron stomach.The scope pictures they took of my stomach were not cute at all. I hung them on the refrigerator in case I got the urge to devour all the contents inside!

November is now here. I am still not eating solid foods and have been surviving on my own specific gastritis-type diet. While I am taking a lot of natural supplements, I am also on numerous stomach medications and we are trying to lower the steroids – which for anyone with chronic illness knows is so difficult when you have been taking them for a long period. I’ve lost ten pounds and I wonder every day when I can begin eating solid food again. Not eating is difficult when you are creating in the kitchen nonstop – but at least my family and dog are being well fed!

Healing is happening – I don’t get severe stomach pains daily like I was, and I’ve been able to lower some of the medication. It is just a slow process. I discuss more of what has and hasn’t worked for me in dealing with gastritis in a separate post that is coming soon.

Nova Scotia still has a special home in my heart. It was one of the most fascinating and breathtaking road trips we have ever been on. In total, we drove over 3,000 miles. There is still a bittersweet side of the memory for me because I can’t pinpoint what the turning point was during the trip for this flare to come on.

Dealing with chronic illness, especially when traveling, can be so overwhelming. The most difficult part of all of this for me was how it came out of nowhere, during a season I was actually feeling quite strong. It seemed like a brutal reminder that I still have Lupus, and no matter how much I feel I am in control of my illness, nothing is really in my control. And that is a hard pill to swallow at times…for anyone with chronic illness.

I’ve prayed a lot during this difficult season, asking God to turn all of this into something good, something that might help someone else. At the end of the day, I am most thankful that after 15  years, I was able to make the trip. Yes, there were some bumps along the way, but I would do it again in a heartbeat.

I’ve learned when traveling and planning alongside a chronic illness, we must be flexible. We must plan for the moments we are exhausted and can’t give that extra piece of ourselves that so many of us give. But that doesn’t mean we can’t enjoy the trip, the scenery, and the company. It just has to be on our own terms.

My trip to Nova Scotia confirmed for me there is no “right” time to go away with chronic illness. Lupus is still a part of my life…so is the brain aneurysm. But what’s bigger than both of those things is my desire to see this incredible world and explore the lives of others. Lupus may want to come along for the ride in my travels, but it better be prepared to sit in the back seat because I refuse to offer it front row accommodations!

At the end of my days, I want my mind filled with a library of memories instead of regrets. It’s this desire that pushes me on a regular basis to break free from the boundaries chronic illness has placed on me.

If you’ve been dreaming of an excursion but are worried about your health, I encourage you to take a leap of faith when you are best able. I’ll be right here, waiting to see your amazing pictures!