Taking Lupus on Vacation

Well, I think I have done it! I have taken Lupus along on Vacation, enjoyed myself, and survived with only mild symptoms. Yay me! I feel pretty proud of myself, actually. While I'd like to take all the credit, there is a little bit of luck to it as well.  I'll take it.

As some of my followers know, my Dear Husband and myself have a tradition in our marriage that began on our first wedding anniversary.  We didn't want our anniversary to be a hardship on one person more than the other, or have it be something that we would forget about.  So My Dear Husband arranged for a "Mystery Trip" for our first wedding anniversary.  It was just a long weekend away, a nice dinner out and some romance. I didn't know where I was going, I only new what to pack and what time off to arrange for at work. It was lovely and I was challenged to do the same for my Dear Husband the next year. We have been doing this for each other for the last 30 years and it's been great. We have, stayed in a tree house, bed and breakfasts, taken trips on trains, driven to exciting locations and had grand adventures. Some of our early adventures were very humble but fun for us anyway. Well this year was our 30th anniversary and it was my turn to plan the Mystery Trip.  However, I put it to my Dear Husband, I could plan the Mystery Trip and I would be happy to do it. Or, since its our 30th, we could do a BIG trip and plan it together.  We opted for the BIG trip and the planning commenced.

With a big trip there are a few big concerns for a person with Lupus. I have to be very regular with my medications, apply sunscreen daily, watch my diet, get plenty of rest, avoid stress ..... this is not easy when traveling.

Our fist step was to choose where and how to travel.  In the past, before Lupus, we were fine with flying to a location, renting a car, getting a map and following our nose.  However, that type of travel is a little more uncertain, and sometimes stressful, and never on schedule. So for this trip we decided to choose an "at leisure tour" where we would stay in one location for 3 days, then move on to the next location and settle in for 3 days, etc. This kind of traveling is a little less stressful as we didn't have to drive in a country where the rules of the road are different and we don't know our way around. There would be a little more down time every few days where we would have half a day on our own and would be able to explore or rest, as opportunity or needs arise. Choosing a leisurely tour narrowed our choices of destination down a bit and we whitttled it down further to three destinations. Since it was my turn to plan and I should choose something that my Dear Husband would like, I let him make the final choice.  He was thrilled. We chose a tour that started in Amsterdam and continued on to Luxembourg and Belgium. Because my Dear Husband is a home brewer, he really looked forward to drinking Belgian beer and I don't mind a beer now and again myself. It was a great choice. Unlike my Dear Husband, I had been to Amsterdam before, but neither of us had been to the other destinations, so it was a real adventure for both of us.

One of the first things I did was start a few months in advance and start walking every day to build up  my stamina a little more each day.  I wanted to be able to keep up and avoid flares. As the departure date got closer, I started resting up, declining social functions and doing a lot of self care. I wanted to start out in my best shape with my batteries charged and ready to go.

Another thing I did was pack very well.  We only took our 21 inch carry on rolling suit case.  This was such a good thing, because I didn't have to carry anything except my purse (which I clean out to be light and manageable). If I was going to have a flare and muscle weakness during the trip, I didn't want to have to carry anything heavy. The trick to packing light was something I learned by doing it wrong and learning the hard way.  I'm getting good at this these days. You need two pairs of really good comfortable walking shoes. Use tried and true shoes, don't take a brand new pair of shoes and don't bring heels. We walked 5 to 10 miles per day and you don't want to break in new shoes with that kind of
mileage. Trust me, you don't need the red stilettos, save them for a dinner out when you get home. We went to Amsterdam in mid September, so we checked the weather for about a month prior to get a feel for the weather. They were having rain, not to cold, but very wet. So we needed a rain coat and layers. I did not pack a pair of underpants and socks for every day of the trip. It takes up too much room. So I packed a tiny bottle of Woolite, to wash out our underthings. The first day at each location we hand washed our under and socks and hung them out to dry in our hotel room.  Ladies, stick to light weight lacy panties, they dry faster. Gents, the microfiber shorts dry fast too. It worked very well.


Packing medication worried me.  So I packed my week at a time pill box in my suit case and I also had a small bottle of meds in my purse.  I figured if one or the other is lost or stolen, I'd still be able to keep up with my medication regimen.  I normally take my meds in the morning as soon as I wake up, however with the time change and traveling, I didn't want to mess up my body with changing the time I take my medication. My solution once we landed, was to take my meds before bedtime, it would be close to the same time to when I normally took my medication when I was home.  It worked out well and I was able to keep things consistent.

I think the location and the time of year helped me with my challenges as well. It is not a tropical location, so there was not a lot of skin showing.  We were in overcast and rainy weather with bits of blue sky. While I was careful to apply sunscreen everyday, I didn't need to wear a sun hat or hide from the sun.  It was quite freeing actually.

The Jet Lag is always a challenge, however staying hydrated and trying to sleep as much as you can on the flight will help. Earplugs are your friend. We actually brought some melatonin and took it just before take off, I think we may have nodded off a bit or at least rested.  Once we landed, the key was to stay awake and not to nap, we just waited until bedtime in the new time zone and the next day we were pretty good. Coffee helps.

For me Lupus does not like it when I drink very much alcohol, I usually get muscle weakness and skin issues. However when you are in the Netherlands and Belgium, it would be a shame not to partake of their lovely beer.  My husband is a home brewer so trying beer while we travel is a given.  That said, I do have to limit my intake, but I did not miss out.  I can have one now and again and I am glad I did. I limited my beer to one every few days and would take a sip of my Dear Husband's when I didn't get a glass of my own, so I could taste a few beers but without the Lupus symptoms. It worked, mostly.

The nice thing about being on a tour is that you don't have to drive, navigate or waist time getting lost.  The bad part is that you have to be on a bus with a lot of other people, and their germs.  I made sure I had hand sanitizer and used it often. Gloves also help, especially when visiting ancient buildings with ancient handrails with generations of germs on them. Then when you stop for lunch and take your gloves off, your hands are clean when you pick up that sandwich or stroopwaffle. There  were a couple of people in our tour that got a nasty bug and my Dear Husband and I did not. So the hand sanitizer paid off.  I did come home with a very mild cold, but not the "nasty" that was going around our tour group.

There are a few things I wish I would have done a little differently. One of my Lupus symptoms is that it attacks my skin.  I will develop red, itchy, scaly patches on my hands, elbows, and face that can sometimes develop open wounds. They can start quickly and in a matter of hours and I have very uncomfortable patches.  At home I would slather with the ointment prescribed by my doctor and also with a fragrance free lotion that helps with keeping this under control when I have a break out.  I brought my ointment with me but neglected to bring my lotion. The lotion that is provided in hotels are perfumed and irritate my skin further. My hands were a mess for most of the trip. I would have done better had I brought a bit of my own lotion. Also, I would have brought a better under eye concealer, because I look really tired in many of our photos. Apparently the medication that I am on also contributes to the dark circles and of course jet lag doesn't help. The other thing I would have done is bring formal leggings, the kind that look like slacks but have some stretch to them and don't have buttons and zippers at the waist. I had some black jeans that had some stretch to them but they did not hold their shape well and did not dry well when we got wet while walking in a down pour. They worked well enough but I think I would have been more comfortable with sturdy leggings, especially when were were at the big dinner at the German winery or to accommodate the Frietes with mayonnaise and Belgian chocolates!

The best things about traveling is meeting new people, opening your mind, seeing how other countries operate, taste new things, participate in local events and bring home amazing memories.  So to all of you, I wish you healthy travels and amazing adventures!






And of course, there are the joys of coming home.....