Sunday, April 20, 2014

Travel Time


I'm really excited to be participating in the WEGO Health Health Activist Writer's Month Challenge.  I'm hoping that the challenge factor will motivate me to write more often (every day this month, in fact!), and that that will develop into a habit of writing regularly after the month is over.  More importantly, I'm hoping that by sharing my experiences, thoughts, and insights about living with chronic and invisible illnesses, I'll be able to bring comfort to someone struggling with the same issues.

*Note - I'll be including this introductory paragraph at the beginning of every post, so that anyone who's checking in will have that background info.  If you come back another day (and I hope you do), you can skip this part!

Today's assignment: Travel Time.  If you could travel to anywhere in the world, where would you go? Why? We also know traveling with a chronic illness can be challenging, so any tips for others that you can share would be great!


Vacations have always been very important for hubby and me.  For most of the time we've been together, we've worked alternate schedules: evenings, weekends, holidays – one of us is almost always working (except for this temporary period of unemployment).  We've gone years without sharing a day off, so the couple of weeks during the year when we share vacation time can be our only opportunity to spend more than a few hours together at a time … so we are sure to make the most of it. 


For us, making the most of it usually means going on a cruise: it allows us to see a few different places in one trip, while making the travel time between ports a destination in itself.  For me, quite often the destination doesn't even matter. (I often can’t even tell them apart, or remember which islands we’re going to – instead, I just say we’re going to the “St. Something” islands!)  There is often so much to do on the ship that we look forward to the days at sea for a chance to explore and try it all.  

Having a chronic illness definitely changes the experience of going on vacation.  Not only are there the physical limitations caused by the disease to consider, but the additional prohibitions because of the medications themselves.  A couple of years ago, just before we left for a much needed vacation, my doctor put me on Methotrexate.  For anyone who doesn't know, Methotrexate is a chemotherapy drug used to treat cancer and a number of autoimmune diseases.  It suppresses the immune system, so patients are more susceptible to infection and less able to fight it, which means that extreme precautions must be taken to avoid getting sick.  It can cause liver problems, so alcohol should be avoided.  It increases the risk of skin cancer, so patients must be shielded from the sun.  So … just before going on a cruise, I began a medication that meant I couldn't drink and I couldn't go out in the sun.  Aside from that, I was in too much pain and had lost the strength to do the more physical activities (my favorite was always climbing the rock wall).  All I could think was “what’s left?”  It was a serious adjustment, but I did what I could to make the best of it. 

When I’d mentioned the no sun and no alcohol rules to a couple of friends, their responses ranged from “what’s the point of going, then?” to “what a waste of a trip!”  (Ironically, I remember hearing the same response years earlier, when after losing 70 lbs. I'd planned to eat reasonably, even on the cruise with its unlimited offerings and chocolate buffets.)  While I could understand their immediate reaction, I could easily respond.  The “point of going” was to get away with my husband, to spend time together without the stresses of work and everyday life.  Sure, I’d have to make some adjustments, but it could still be a great trip.  As with everything else, I just had to change my perspective.  Rather than thinking about all the things I couldn't do on this trip, I just had to think about what I could do, and what I was still looking forward to.  With a little preparation, I could do a lot more than just hide out in my stateroom.

The truth is, when living with chronic illnesses, we make enough sacrifices every day.  There are things we can’t do, jobs we can’t hold, places we can’t go … and that’s on a good day!  We deal with pain, frustration, andmisunderstanding on a regular basis, and life is just harder than it is for healthy people.  We do the best we can to get through it, but I believe it’s that much more important for us to have a chance to escape, to get away from the day to day stresses of life.  Of course we can’t escape our disease or its symptoms, but we can enjoy a really nice vacation if we just take the time to think it through and plan for it.  If we’re lucky enough to have a supportive significant other (or family), this getaway can be especially rewarding for them, as they get to just enjoy time with us, rather than having to care for us on top of the stresses of their own jobs.

With that in mind, here are my tips for enjoying a vacation with a chronic illness:

Consider the climate.  This might be in choosing your destination altogether, or just determining what time of year is best to go there.  Many people with autoimmune diseases are especially sensitive to temperatures.  Personally, I have difficulty breathing (cold-induced asthma) and pain and numbness in my hands and feet (Raynaud’s syndrome) when it is too cold.  On the flip side, I get extreme hot flashes/sweats in mild weather (partly from the autoimmune thyroid disease, partly from the steroids to treat inflammation), so extreme heat can only make that worse.  What that means is that when we eventually satisfy hubby’s desire to go to Alaska, it will have to be in the summer, when it’s not as cold.  Likewise, the next time we go to Disney World, it will be in the winter, when it’s not as hot and humid.

Schedule appropriately.  There are so many sights to see and things to do when we travel someplace new, and we might be inclined to try to squeeze it all in.  Unfortunately, that can lead to an awful flare, and we’ll either suffer tremendously when the trip is over or not be able to make it through in the first place.  Instead, we've got to pick and choose the most important sites, and then the next “if possible” group after that.  My recommendation is to schedule excursions on alternate days, with an easier day to rest, relax, and recuperate in between.  If we don't get to everything we want to see, then we'll just have to take another vacation!

Pack the precautions.  We may need to avoid the sun, but we can’t (and shouldn't) avoid going outside during daylight hours.  Sunscreen is an absolute must (my dermatologist recommends Neutrogena’s SPF 60 pureSCREEN), and should be in every purse, carry-on, and beach bag to be reapplied as often as necessary.  A big hat can help shield the face and neck, and thin cotton or linen clothing can keep us cool but covered in the warm weather.  We should also pack an umbrella/light rain jacket, so a sudden storm doesn’t lead to a cold (which can be much worse with a suppressed immune system).  If we’re not sure when or what our next meal may be, it can be helpful to throw a few snacks (and water, while we’re at it) in the bag, so we don’t have to go too long without eating.  We don’t want to become too weak (or cranky) to enjoy where we are.  Last but not least, we’ll need to have that handy dandy first aid kit that includes all the medications we’ll need while we’re out, additional as-needed meds for what-if situations, bandages, cleansing wipes, and antibiotic ointment to prevent infection if we get cut, and hand sanitizer to kill germs after anything we touch.

It’s gotta be the shoes.  While style is something we often think about, it’s much more important to consider comfort, especially if we want to enjoy our vacation.  We’ll need good walking shoes/sneakers for sightseeing excursions, flip flops (or water shoes) for beach or pool days, and dressier sandals for evening dinner.  Experts recommend going shoe shopping at the end of the day, when our feet may be a bit more tired or swollen than early in the morning.  That’s an even bigger consideration for someone with an inflammatory condition, as our feet and/or ankles can swell more than “normal.”  At one point, I had to buy moccasins that were a size larger than I usually wear, because I just couldn't fit into any of my own shoes.  We never know when that swelling will happen, so I recommend having at least one pair of easy slip-on, non-constricting shoes with you at all times.  No matter how comfortable shoes may be in the store, there can always come a time during the day that they start to rub us the wrong way (literally!).  It’s better to have an extra pair in our bag than to waste hours of sightseeing time looking for a store to buy a pair of whatever-we-can-find-that-won't-hurt-so-much shoes.

Attitude is everything.  More than any other precautions or preparations, the most important thing to consider when going on vacation – or in any other aspect of life – is our attitude.  Yes, we've been dealt a crummy hand with chronic illness … but we’re still in the game, and we've got to go all in.

**If you like what you read, tell a friend.  In fact, tell me, too - post a comment below!  If you don't ... well ... I'm all for honesty, but ... please be gentle!