Bringing Lupus on a Family Vacation Requires Planning and Recovery

I am on day 3 of recovery from a 5-day vacation.

No, it was not a rave-filled party or an alcohol-induced retreat. In fact, as far as vacations go, it began quite mildly. I packed up the SUV with our two little dogs and my teenage boys, then we pulled out of the drive and headed on our way. Typical, right?

To be fair, we actually live in a vacation-type place already. Living in the Santa Cruz mountains, less than 20 minutes from the Santa Cruz, Calif., boardwalk, the need for a vacation was almost a backward need for the concrete jungle of the metropolis where we are headed. We are trading our redwoods for palm trees, so we popped some Tom Petty on our Spotify playlist and set out on our much-needed road trip to gorgeous Los Angeles. There is plenty of sunshine ahead, and that’s where the problems started.

You see, we aren’t your typical family.

I don’t mean that in the sense that I am a single mom, because that is becoming quite typical. I mean it in the sense that I am a proud lupus warrior. Everything I do has to be thoroughly thought out with a back-up plan of “what if?” What if I get sick while we are there? What if I have an arthritis flare-up and can’t walk? What if my face flares up and I am embarrassed to go out in public? What happens to the Disneyland tickets? Or the non-refundable airline tickets? Should I take my cane or try to get through it? All of these questions are asked before I even pick a city.

Relaxing with family.

Preparing for the destination probably is the biggest thing when going out on holiday. Bring walking shoes, plenty of sunscreen, and my favorite hoodie. Having either cool clothing for where it is warm, or warm clothing for where it is cold, can be the key to comfort when layered properly. As a rule, I am pretty much always cold. Even 80-degree weather with a cool breeze can send goosebumps straight up my arms.

The sun can be seriously damaging to anyone, but for those of us with lupus it can cause a serious flare-up. For me, too much sun starts with severe fatigue and then slowly does a number on my entire system, depending on how careless I am. One time after an extremely fun adult trip to Cancun, I lost the ability to swallow food. I choked on everything I tried to swallow, both solid and liquid, for about three weeks until the inflammation went down in my esophagus. (Yeah, that trip was still worth it.)

Packing meds and medical items, depending on length of stay.

Walking, boating, sun trip, skiing, heating pad, allergy pills, a walking pharmacy. Wheelchair for Disneyland, or rough it and make it through? If you have lupus you probably have packed all of these items with you on your last trip, or will definitely be taking them on your next.

Have a back-up plan … or three.

Packing up the kids. Setting the expectation that the family trip has to have a somewhat loose itinerary due to Plan A not working out, and Plan B failing and, gee, now we are on plane. Can’t we all just go with the flow? No, kids sometimes can’t go with the flow. So have a back-up plan — or three — for activities they can do.

Whether it’s a science museum that allows you to move slowly while indoors, or pitching a tent at the beach, so even a small nap could be had if needed, getting out is necessary for your well-being. It can be tough planning a trip out of the sun, yet allowing the kids to have fun. Some of my favorite movies I took the kids to, were also some of my best naps.

Eating healthy while on the trip. It’s so tempting to eat fatty and sugary foods, but we pay for it later. Sometimes it’s necessary to set my expectations that sometimes I just can’t do it all. And that’s OK. It sucks to be honest.

There are times when I don’t know if I am coming or going. Other times I have to remind myself that it isn’t always about enjoying the destination, but sometimes it’s truly about learning to enjoy the journey.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.