I was diagnosed with lupus after many years of being misdiagnosed (or just plum ignored). Once diagnosed, I was ecstatic, but it started my wheels turning. What did that mean for my life as I know it? How do we treat and manage this? What questions should I be asking but I just don’t know enough to ask them? Also, how does this change how I travel?
In 2009, when I was diagnosed, I struggled to find many reliable resources. Of course, I researched online, but it was incredibly overwhelming. Or people didn’t talk as openly, so while I saw many medical journals, I wasn’t finding any personal experiences.
Since that diagnosis, I’ve traveled the world. It hasn’t always been easy, but I’ve found ways that make it easier for me. Travel can be stressful. I like to over prepare to avoid stressors whenever possible. Please note: I am not a medical professional and, as such, am unable to offer medical diagnoses or medical advice. What I can offer, though, is support, as well as my own personal experiences.
1. Mentally and Physically Prepare
I always stop and mentally prepare for every trip I’m taking. Let’s say it’s a beach trip and I know the sun and heat, along with barometric pressure, are going to be challenges for me? I mentally prepare for those challenges. I recognize that heat causes my body to become tremendously inflamed and swollen, which also means keeping very low-sodium before I leave (and while I’m there). What about a cold environment full of snow and ice? My cold uticaria means that I have an allergic reaction to cold exposure, so I need to prepare with lots of layers, hand and feet warmers. Stress exacerbates my symptoms, so I try to destress and relax as much as possible.
2. Pre-Plan Food Options
Spontaneity is exciting, but you know what isn’t exciting? Being super hungry and not finding anything you can eat. I always bring my own shelf-stable snacks wherever we travel. This ensures I know there are things I can eat regardless. I eat based on a specific AIP (Autoimmune Protocol) diet designed for me. I don’t eat nightshades, sprouts, garlic, and I eat a very low carb diet (sub 25/day). This is because I’ve learned those food items cause me extreme discomfort and inflammation. When I travel, I research local cuisine, restaurants, readily available food options, and grocery stores ahead of time. This way, I always have options. And if I find something on the go that fits my dietary needs, all the better.
3. Check the Weather
A week before we travel, I always check the weather. I also like to check what the weather typically looks like during the time of year I’m traveling. This way, I can pack very intentionally based on projected weather and potential weather. I like to pack for every occasion, which includes a lot of layers. No matter the season, I never forget a cardigan, a hat — things to protect me from the sun. I am extremely photosensitive due to exposure to UV rays. And remember, it doesn’t need to be a bright summer day to be susceptible to sun exposure.
4. Don’t Be Afraid of Asking for Accommodations
When flying, I’m never afraid of asking to board early if it feels necessary. Travel can be so stressful on my body and I used to be too proud to request to board early or use a wheelchair if needed. Now I think of it as a precautionary measure. It’s helpful for my family, too, since I have to rely so heavily on them, especially when dealing with extreme fatigue during travel.
5. Personal Bag
Always make sure you pack your meds in your personal bag. I always bring more meds than I think I’ll need. Better safe than sorry. Within my personal bag, I also try to keep any other essentials I need, including sanitizing wipes. If I’m using any public transportation or restrooms, having sanitizing wipes is a huge help. “Con crud” is so real for me. I am often sick after travel. Especially travel where I have to be around strangers a lot, like cruises or theme parks. Whatever I can do to minimize the likelihood of getting post-trip sick the better.
6. Travel Direct, If Possible
Sitting for long periods of time is tough on already fatigued muscles. Muscle and joint pain can be so challenging. When flying, I book direct, non-stop flights to my destination if possible. If road tripping, we tend to drive during the night so I can sleep and get as much rest as possible during the driving portion. Regardless of if it’s a long flight or a road trip, I try to keep stretching to ease the discomfort I’m feeling in my joints. I roll my neck, my ankles, twist my back, stretch my hips.
7. Prepare For Flying
I deal with ascites during flights. That’s when fluid builds up in my abdominal cavity. This is a severe lupus symptom, but in general, bloating and stomach inflammation while flying can be pretty common for lupies. The pressurized cabin combined with a lack of humidity can pull fluid from the body and cause a lot of discomfort. I make sure to stay very low sodium before and during travel, to help mitigate some of the symptoms. But, truly, it’s inevitable. I’ve learned that massaging my stomach during the flight and not wearing something that puts pressure on my abdomen are both a must.
8. Stay Hydrated
When home, I am so good about staying hydrated. While traveling? I often find myself getting really dehydrated which is definitely no good. Especially for lupies. While flying, dehydration is an even bigger factor for me. I dislike using public restrooms, so I tend to try not to drink. Even on longer flights or road trips. I know this is not the right choice, so I need to work harder to overcome my natural instincts. Dehydration promotes inflammation, joint swelling, and joint pain. All things that lupies often deal with on a regular basis. We definitely don’t need to exacerbate already existing issues.
9. Be OK If Plans Change
I travel hard. No, seriously. I am the type of person who always needs a vacation after my vacation. I fill every available moment with an adventure of some sort. I’ve had to really work on being OK if I’m not OK. If I’m not OK to hike 5 miles that day or if I’m not OK to be out in the sun, even if I have my sunblock and hat and full coverage outfit. I used to feel guilty and ashamed and so afraid of missing out. Now, I listen to my body and remind myself that there will always be another adventure.
10. Plan Downtime
This is the hardest one for me. Like I mentioned, I want to fill every available moment. And that’s just not sustainable. My family reminds me to stop and rest throughout the trip because I’m not always the best at reminding myself. I really need to be, though. Pushing myself beyond my limits means I get the short term gratification of whatever activity I want to partake in and then follow that up with potentially long term challenges. For instance, over-extending myself on a hot beach the day before can lead to body temperature regulation problems the next day, combined with fever, chill, inflammation, or worse. Listening to a body that is always screaming in pain isn’t always easy. It can desensitize you. If I plan for the downtime, it can be part of the schedule and easier to abide by.
Have a tip for traveling with lupus? I’d love to know more about it.