It is no small order to travel when you have a chronic illness. I believe the preparation and the anxiety of not knowing what to expect are the most challenging parts of travel for anyone new to a diagnosis and who still wants to adventure.
MCAS, or Mast Cell Activation Syndrome, is a disorder of the body's Mast Cells, usually triggered by the start of an illness. Mine has been dormant in my body since I was a kid; having Ehlers-Danlos Syndrome, I was more prone to it. I was already very allergic to dust; at 12 years of age, I was allergic to bee stings. After developing Lyme’s Disease at the age of 37, it took until I was 44 to figure it out and get on medication. By then, I was wheezing so severely from the histamines I could hardly breathe at times. Inhalers and asthma medications didn’t work.
Once diagnosed and on the proper medication, I found almost instant relief. Thank God! What is sad is that mainstream doctors are not educated to even look for this as a potential diagnosis. Thus, we are often labeled “zebras” as we struggle for diagnosis or are misdiagnosed. For those of you like me, bringing awareness to others around you, I applaud and thank you!
After diagnosis, traveling was a bit hard. All of us with MCAS are also different. Not everyone has the ability to eat many foods. It can often take a long time to get your symptoms under control and find the “culprits” that are triggering you. I was determined not to let this diagnosis slow me down, though. Even when I wasn’t fully functioning well, I traveled, just not fast!
The meds are touchy to temperature, and my body doesn’t like altitude as much. So, on travel days- flights and long distances in the car, I plan lots of rest afterward. We don’t do anything! There is no sightseeing on those days. I don’t even like leaving the hotel for dinner or going very far, at least! My family is used to it by now. Then I am good to go the following day.
Living in Minnesota, I NEED to get Vitamin D in the winter. What better way is there than to take a cruise? My husband and I planned this cruise to Mexico. I had been on other cruises before and knew what to expect, but it was the first one since my diagnosis. Packing for a trip for a week, planning for the weather on board a cruise, always plan for wind! And bring your best sunscreen, of course. I love to pack my meds in little disposable pill bags. I will reuse these repeatedly for trips until they are worn out. I have found them at TJMAXX, Homegoods, and easily online at Amazon.
Another thing I have found essential is my epi-pen bag that is insulated to store my medication for MCAS. It is excellent as my personal item on the plane. It holds enough for a week; I can fit more in my carry-on if needed. The airlines are trying to get everyone to check their carry-ons, but they will accommodate you when you have temperature-sensitive medications. You simply need to advocate and speak up. I’ve become excellent at advocating for myself.
I had a major MCAS flare around Thanksgiving into Christmas, so I hadn’t been relatively stable, but I knew it was mostly stress-induced. Once I got everything in my body under control, I could be ready to plan travel. I checked Carnival’s food dietary website and knew I could talk to our wait staff once on board about any specifics I needed, no problem. Plus, there are many buffet options to choose from.
Once in our dining room, I was pleased to see vegetarian options and always a fish option. ( I struggle with red meat often.) The dessert always had fresh fruit as an option, and the vegetables were steamed to perfection, making them easy to digest.
One thing I love about cruising is the myriad of people on a cruise ship. I counted numerous scooters on this ship. I was delighted to see Carnival’s cruise line offering scooters for its passengers. That may be me someday, and I know I will still want to have adventures and get around! The cruise line ensures the whole ship is easily accessible for all its passengers, and I love that.
One thing that does bother me is smoking is still allowed in two small, specific areas of the ship. Being allergic to cigarette smoke makes it difficult to breathe in those areas. I quickly learned where those areas were and avoided them as much as possible.
Going to the Caribbean is one of my best environments: the salty air, the fresh seafood, the ocean breeze, the sun. Plus, onboard a ship, I can rest. Truly rest. I’m away from screens. The boat gently rocks me, and my body goes into total
relaxation, and all it wants to do is sleep! I know all of us are different. If you have MCAS that’s stabilized, life doesn’t have to be over. And if you are in the process of finding answers and getting your food and environmental triggers figured out, be patient. It takes time. There is hope. Breathe. Look up. Take one step at a time, find your best environment, and live your best adventure!