First time to travel with lupus

by Laguna Lupie

I first started traveling abroad with my family when I was eight years old and my happiest childhood (if not lifetime) memories were of traveling. The best ones were of our first trip to the US where we did a cross country tour from LA to New York then up toward Canada and then back down to Seattle (I was nine years old then), and then when I turned eighteen we did the Tran-Siberian railway trip from Beijing to Moscow and then St. Petersburg down toward Latvia and then back to Hong Kong. 

As I got older and started my own family, traveling took a back seat to other life goals (setting up house, having a baby, starting a business…) and we only started traveling locally as a family when our small business became more stable and profitable.  Our first trip abroad as a family (the first time my husband and first born son went out of the country) was our trip to Europe (Paris then Vienna) to accept our company’s international award for our social responsibility program called the Sinag Journalism Training Seminars.  Our printing press won the Natasa Prize of the World Young Reader Awards 2011 given by the World Association of Newspapers and Publishers (WAN-IFRA) based in Paris, France.  This trip and the award that went with it was a dream come true and I still consider this one of my life’s highlights so far.  A few months after that trip to Europe, I experienced my first bout with rheumatism and a year later I was diagnosed with lupus. 

Being told that I had to stay out of the sun for the rest of my life and that I had to drastically change my lifestyle as a result of the lupus was one of the biggest blows given to me by this disease.  I thought about my love for travel and had this feeling that a significant part of my life would be closed to me forever.  I spent the first few months of 2013 grieving about this but summer came and I had two young sons who, I believe, should experience the joys of travel and summer vacations.  I found promo airline tickets online and soon we were booked for a week on the beaches of Boracay.  I remember going to the doctor shortly before this trip and when I told my rheumy I would be going to the beach, he frowned and said, “What made you think you can go to the beach now?”  I told him I would be staying out of the sun and I just really wanted my sons to enjoy the summer and have good childhood vacation memories with me – despite the lupus.  He grudgingly acknowledged my desire to pursue this vacation and just said I needed to keep slathering on the sun block throughout the vacation and that I had to wear pants and long sleeved shirts while outside (imagine how silly I looked all covered up on the beach) and buy myself some UV protect umbrella (I already have one) and if, god forbid, I wanted to swim on the beach, I could only do so after 6pm and not a minute before.  Haha! He was so worried about me, poor guy, he must have many other hard-headed patients like myself.  My husband was angrier when I told him I already bought plane tickets to the beach without consulting him first (because I knew he would say no!) but he relented eventually and during the vacation itself, was always the one to remind me incessantly about all the little details (“sun block! Umbrella! Ugly shirt! It’s not yet 6pm!”)  We spent six days in Boracay beach, my boys having the time of their life on those powdery white sands.  It was a leisurely trip with no itineraries or island hopping tours scheduled.  I had the freedom to sleep in during the day if I felt too tired, while the family went out on the beach or went shopping around the malls.  Most afternoons I would sit with my umbrella under the trees, buying overpriced mango shakes and enjoy seeing my boys swimming in those world famous crystal blue waters. 

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My boys swimming in Boracay’s world famous beach.

 

ImageEverywhere we went, I always had my UV protect umbrella and never forgot to slather on the sun block lotion!

 

We met up with two other families (old high school buddies of mine) in Boracay and we visited each other’s resorts/hotels, with the kids playing in the sand and us adults waiting for happy hour to start at the bar (I didn’t drink of course, haven’t done alcohol in years but I enjoyed the shakes and food).

When it got dark, we would comb the beach looking for nice restaurants where we could have dinner.  It was a real treat that I also got to catch up and bond with old friends during this vacation plus my eldest boy had his playmates/school mates with him on the beach.

 I was mostly too tired after dinner to join in the bar hopping with my husband and friends but my mom and I spent the whole vacation getting massages before bedtime, so I didn’t mind.  I am one of those people who enjoy a massage more than listening to music and drinking cocktails.  A massage every night sounds over-indulgent I know, but that was the real vacation for me –those heavenly massages before going off to sleep and listening to the nightly rain showers out my window. 

We went home on a big boat (2go ships) going to Batangas pier near our province and this was a welcome new experience for my first born as well (having never traveled on a passenger ship).  He spent the whole day out on the sun deck and playing around the lobby with the family while I slept fitfully in the cabin, only getting up for lunch and snacks).  I rested for a few days after that trip, keeping very quiet and half dreading the travel to the beach might have triggered a lupus flare but I was fine afterwards and was quite happy with how things turned out.

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I could only swim in the beach after 6pm so my friends were only too glad to join me in my own “happy hour.”

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This was our spacial spot on the beach under the trees where we pitched our tent and I sat around with mango shakes.

 

I learned that I could pull off a successful trip to the beach as long as I kept to my doctor’s warnings (two expensive bottles of sun block consumed in that weeklong trip!) and accept that I could never do travel the way I used to do it but that I could do it nevertheless, as long as I kept true to my new limits.  It also helped a lot that I was with a group that accepted and adjusted to these limitations as well.

So that’s the story of my first ever attempt at a beach holiday post lupus diagnosis.  It was a great success and I am looking forward to next year’s beach holiday (this time it will be more fun since my baby will be a toddler then and I assume we’ll be chasing him around the beach for the next vacation).     

Next on our list is a new trip on January — a family trip to Singapore!  My brother will be coming home for the holidays this December and he wanted to go to Singapore with us before returning to Sydney.  I know, I know, you’re thinking I’m pushing my limits here but I think this is a worthy experiment on traveling with lupus (and with kids!)  This will be another weeklong trip and there will be a couple of theme parks on the itinerary.  I will be with another supportive group (with extended family including my mother and her business manager, Jackie, who will help out with taking care of the baby, as well as my husband, our seven year old first born and my brother, who is an ER doctor,  so I feel safer already.)  I have been reading up on traveling with lupus and have discovered that most lupus patients who travel to theme parks actually avail of their wheelchairs for rent so as to save on energy and prevent overtiring themselves on these parks.  I may actually do this but am hesitating somewhat.  Me on a wheelchair isn’t something I am ready to do, I haven’t wrapped myself around the idea just yet but I have a few more months to think about it.  If any of you have any tips or warnings about traveling with lupus, please feel free to write on the comments section of this post.     

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