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.
**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!
