Pushing my limits: Lupus lessons learned while traveling in Singapore

by Laguna Lupie

I just got home from a vacation with my family in Singapore this January.  This is my first trip abroad since being diagnosed with lupus and it has been exactly one year since my diagnosis.  We were all excited and apprehensive about this trip as this would be the litmus test for me and traveling with lupus.

I am now back home and seem to be fine so far, but I still haven’t gone back to my doctor, haven’t had my laboratory tests taken, so I’m not quite sure what the tests will say about my travels abroad.

To begin with, my doctor seemed discouraging about this trip.  When I told him about it, he had this “Hay, there’s nothing I can do about it” exasperated air about him which I chose to ignore, of course.  The thing is, prior to the trip, my semi-annual check-up and lab tests last December showed that my ESR (indicator of lupus inflammation) was quite high, around 57 (maximum ESR count for a normal person should be just around 20, so a 57 is alarming no?).  And he said that was a pre-lupus flare figure so he put me on prednisone last December.  He said it’s the lowest dose, 5mg daily, and it should help put out any fires.  I told him I was busy with Yolanda relief operations and was also in full holiday mode so maybe I was pushing myself a bit.  I promised to take it easy but was not able to keep that promise because my brother came home and we became busy with preps for my mom’s 67th birthday.  And then we went to Singapore (insert sheepish smile here).

I loved the vacation, I really did.  But I must also admit that it almost broke me.  All the walking and sightseeing had me achy and feverish by the time we got back home.  It took me a week of lying around in bed to start feeling close to normal.  All the time I was praying I won’t go into some awful flare that would land me in the hospital.  I’m still here, writing this post, so that should be a good sign, right?

Anyway, here are my lessons learned from this first trip abroad as a lupie:

  1. When going to theme parks, rent a wheel chair.  Don’t be shy about it and don’t think people will look at you strange (as I myself feared when we went to the Universal Studios Singapore).  It will help you through a day of walking and a great big PLUS of riding wheelchairs is that you skip long lines.  Hehe.
  2. Pace yourself.  Our group was comprised of one lupie, one senior citizen and a couple of kids along with the others.  We didn’t force ourselves into strict itinerary schedules because we honestly could not do the normal jam-packed tours families do to maximize their vacations.  True, we missed out on some sights like the Legoland Malaysia and the Singapore Zoo but I don’t regret our pacing, if we had pushed it further perhaps I wouldn’t be writing this now. I’d be writing it way later.  After a lupus flare.
  3. Don’t forget your sunblock and your UV protect umbrella.  I didn’t forget the sunblock but I forgot my umbrella, hence an expensive Universal Studios umbrella purchase on the second day of our vacation.  Oh well, it’s a souvenir, I say to myself.
  4. If you can afford it, get a hop on/hop off bus tour or a guided tour or take a cab.  We did a lot of subway rides and walking to and from stations.  By the fourth day, me and my mother were feeling the pain.  I could barely get up in the mornings and my mom got blisters in her feet.  We started taking cabs toward the end of the vacation.  The cabs were pretty expensive and I realized we could have saved more (money and energy) if we just bought the hop on/hop off tour bus passes (those red double deck buses that ply Singapore) or if we paid for tours (the kind that picks you up and drops you off at your hotel.)  Next time maybe.
  5. Again, if you can afford it, stay at hotels with central or easy access locations as this will help save you time and energy.  My brother was kind enough to book rooms at the Hard Rock Hotel in Resorts World Sentosa which was around five minutes away from the Universal Studios, a nearby mall and the Sentosa train station.  Our next hotel was the Swissotel Stamford which was right smack in the middle of Singapore’s central district.  It was a couple of minutes away from another mall and under it was a green/red line train station that connected to the airport.
  6. This should be a no brainer but please, please don’t forget your medications and supplements and other lupie paraphernalia.  And don’t forget to bring along your prescriptions just in case you lose them or something.
  7. Keep your documents in order.  We had a lost passport scare in the middle of our vacation.  I couldn’t find my eldest boy’s passport in my bag when we left the first hotel and I spent the whole morning making calls to all sorts of offices and wringing my hands in despair. As we searched and re-searched our bags, we finally decided to go into my brother’s luggage and lo and behold, my kid’s passport was in his travel documents.  I burst into tears and was hysterical for around 15 minutes after we found it.  Everybody was laughing at me for being such a cry baby.  Funny thing is I was calm throughout the ordeal and it was only when we found the passport that I burst into tears.  Yeah, I was that close to losing it.  My goodness. I was totally unprepared for that.  And in all my years of travel (believe me we’ve done the US and Canada, Japan, Hong Kong and Europe and China and the Trans-Siberian railway to Russia…) this has never happened to me.  I was always in charge, take charge, I took care of itineraries and was a whiz at maps and directions – I never get lost, in any place, anywhere.  But this trip made me realize how forgetful I have gotten with lupus and how I should now be extra careful with everything.  That I may never travel the same way ever again and I have to let go of the reigns some more and entrust things to other people who are less forgetful.

Oh but I loved it. Every minute of it.  Despite the morning aches and pain, the stress and the bedridden days after all of it.  I still have the travel bug.  You feel so much alive out there, seeing something for the first time, trying something new, doing something different.  It never gets old.  And as long as my body will let me, as long as I can still afford to do it (or as long as my brother keeps financing our vacations, hehe), I will still travel despite what my doctor tells me.  Despite lupus. 🙂

Below are some of our vacation pictures.

ImageAt the Sentosa Island’s Merlion


The Marina Bay Sands view


One of my not-so-photogenic shots with my wheel chair and umbrella.


In this picture my brother ordered me to get off the wheelchair and get rid of the umbrella. 🙂


At the Marina Bay Sands Skywalk