Chronic Lyme Disease Summit 2

Traveling with fibromyalgia, chronic fatigue syndrome, adrenal fatigue or other invisible illness

I started FibroWorks in an effort to bring awareness to the invisibility of this syndrome and the fact that "the person sitting right next to you might have fibromyalgia" (or another chronic invisible illness). Other similar web sites include the famous "But You Don't Look Sick" site, and the Invisible Illness site, to name just two.  Some people with fibromyalgia are terribly disabled, and I respect that immensely.  But many of us are functioning, barely functioning, or partially functioning, with a (usually fake) smile on our faces.  Smile through the pain, yep, that's me.  We try to look good because looking good makes us feel better!  By sharing my stories on FibroWorks and the Fibro-Fog Chronicles, I hoped folks could learn from my experiences that there is hope.  All is not lost, you can sometimes still work full-or-part-time, and you can still play... And that includes traveling, with fibromyalgia.  You just need to know your limits, and make a few adjustments in how you used to do things, or how your healthier traveling companions do things.  I've tried every "treatment" out there, you name it, from anti-depressants, all the way down to homeopathic supplements.  I am here to tell you that the only thing that works (for me) is managing this condition, my schedule, and resting before and after any important event.  Management is a learned behavior treatment -- no "pill" has helped me, only management and modification.  One is always in a state of "recovery" but never fully "recovered".

Most of my readers already know that I work in the travel industry.  My chronic pain and fatigue started way back when I was very young, but escalated in my mid-40s after a trip to Europe, where I caught a foreign "bug" of some kind from which I have basically never recovered.  This trip was followed by another trip to the Caribbean two weeks later.  These European trips were a yearly work assignment in which I and several colleagues and customers would spend 7-10 days together touring a European city between Christmas and New Year's; and then, in mid-January, I would escape on a brief personal trip to warm climates in a (usually failed) attempt to relax.  I say failed attempt because I would almost always wind up sick with a head cold or chest cold or stomach bug during one of the two trips, and I would always get a "visit from Aunt Flo", every time I traveled, no matter when or what.  My doctors are still trying to figure that one out!

When I became so ill in 2003 that I had to cut my European trip short and return home after only four days, I determined that I could no longer physically handle traveling across time zones.  I also developed a strange case of homesickness that has stuck with me even when I go away from home for an afternoon!  Perhaps that's a feature of getting older, who knows.  In any case, I begged off from the work trip for what I thought would be a year, two, maybe three.  Let someone else have a turn, I figured.  It turned into an unintentional ten year break from the work-assigned trips!

Fast forward to last month, or, more accurately, May of 2013, when I decided I needed to return to the annual work-assigned tour, (a popular annual tradition, still going strong 10 years later!).  After all, this is a family business, and it seems kinda funny not to have a member of the family attending the conferences!  The trip, to Ireland and England, was grueling.  Readers are probably saying, "Oh, poor baby, you were forced to go to Ireland and England."  I totally get that, and understand that it may sound like I'm whining about a trip many people never get to experience, to an outsider or a person who is in relatively perfect health without "issues".  But let me tell you, these events are super high-stress experiences with time-zone changes, extremely short periods of daylight due to the latitude of the countries visited coupled with winter weather conditions, lots of running around, hand-holding, navigating strange cities, carrying heavy suitcases and purses, always watching for pickpockets and robbers, strange food, too much walking, lots of "socializing" with customers and colleagues, and lack of sleep due to sightseeing, airline and meeting schedules.  The flight between Ireland and England was so awful, I honestly thought we were going to perish -- landing was aborted due to high winds, and we had to circle the airport and "try again".   The stress of an experience like this exhausts the adrenal glands within moments for a normal person; try being someone whose adrenals are already compromised.  It certainly gives ironic meaning to the phrase "downward spiral".

In the end, I was ecstatic when I realized I made it through the trip un-scathed, and without a head cold, chest cold or stomach bug (but through the entire trip, yep, even at 54 years of age... Auntie Flo decided she needed to join me on tour, for ten days -- grrr).  But back to the bugs...this was a first!  I didn't get sick! Hooray!  Or so I thought....  That is, until I sat down on the plane back to Boston. BLAM!  Instant sinus pain.  I chocked it up to cabin pressure, at first.  I was wrong.  As the flight moved on, I got sicker, and sicker, and more sick.  Fever, sneezing, nose "running off my face" (as my mom used to say), headache, crushing fatigue.  The flight was ok, I spent most of it blowing my nose, sleeping, snoring, apologizing (I am such a germaphobe, this was just mortifying for me!), and washing my hands in the lavatory, using my shirt sleeve to open and close doors.  The landing was horrendous due to bad weather in Boston, and the ride home to central Massachusetts took two hours (normally it's 50 minutes or so).  More stress on the adrenals, because, as a card-carrying control freak, I don't handle being a "passenger" very well.  Upon returning home, I remember nothing for three days. I spent them in bed.  On the fourth day, the grandkids came over to celebrate "Christmas", which we hadn't celebrated since I was flying to the UK on Christmas Day and they were going elsewhere to visit other family.  I had not had the time to go shopping for presents, either on the trip, or after I got home.  Not to mention food for entertaining! The kids were so wonderful, they actually bought us groceries and food -- now THAT is a great Christmas present!

During the ten years since I took my last [previous] trip, our company added a second conference in a non-European location, usually warm, to occur on MLK weekend.  For some strange reason, I decided that not only would I return to traveling this season, but I would participate in BOTH trips!

I was supposed to depart today (more accurately, tonight at midnight) for the second trip.  Having only just recovered from being sick after the UK trip, I not only regretted the decision to join this second trip, but knew that a weird schedule change such as traveling on an overnight flight and staying awake all night into the next day would potentially land me not on an island, but in bed for another ten days.  I considered canceling the trip... but it's to a warm destination that I've never visited before.  I shortened my participation in the trip, and am leaving a couple days from now, in the middle of the afternoon, instead.  I may miss the first "social" event on the roster.  There is only a one-hour time difference between here and there.  I won't lose sleep, except for having to wake up early for sightseeing assignments, and stay up late in the hotel bar with customers (clean and sober for over 25 years, I don't drink alcohol, so none of my maladies can be attributed to that... oh how I wish it was that simple of an explanation!).  The daylight will last longer than it did in England, even if it does rain (and anyone knows that if you travel with me, it WILL RAIN!) -- we'll be closer to the equator.  And, yes, temps will be 80-something degrees.  Someone might suggest that I am gloating or bragging about all of this... No, that's not who I am.  I am expressing GRATITUDE.  My body thrives on warmth, ocean, sand and sunshine. It is my elixir.  Some people hate the beach and hate 80-degree weather, some, with fibromyalgia, can't tolerate it at all.  It will cure me, it will help me.  That's why I'm mentioning it -- not to gloat, but to rejoice.

These trips are not glamorous.  Our life as travel professionals looks glamorous from the outside... I am here to tell you, it's not glamorous at all.  It is hard, hard, hard work, but we are professionals and we know how to make it look easy and glamorous, even when it's not.  We do that to enrich the lives of our customers,  some of whom are experiencing the trip of a lifetime.

Sort of like when people with fibromyalgia dress nicely to make themselves feel better.





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