living with lupus, day by day, moment by moment

I love traveling.  Spending time away from the stresses of life, immersing in another culture and experiencing new things — what’s not to love? Traveling, however, became nearly impossible for awhile because my lupus was very active.  I was also a new mom with a newborn.  These two factors worked against indulging in travels.  But as my son became older and as I learned to “live” with all of my illnesses, I slowly started getting back into traveling.  It is still extremely challenging and here are a few things I have learned along the way: 

  1. You must choose a traveling companion who understands your illness: It used to not matter if I traveled alone, with a friend or with family.  For business, for a girls trip or for a family gathering, depending on the reason for the travel, my companions changed.  And that was a great thing.  It offered me a variety of travel opportunities and I loved them all.  With lupus, however, it became very important that I travel with someone who could potentially become a caregiver.  Because of my limitations and the unpredictability of my disease, I cannot afford to travel with anyone who doesn’t understand my illness.  I cannot be that carefree, and I dare not travel alone.  While I can be fine one minute, I can be hurled over a toilet without any triggers, another minut.  I need someone there who will know what to do when that happens.
  2. You need to choose an appropriate travel location: Based on how active your lupus is, you are the best one to judge what level of activity you can undertake.  Some lupies can go skiing, while others need a place where motorized scooter can easily be utilized.  In the earlier days of my illnesses, I was completely bedridden and I could only travel via car and a motorized scooter.  Now, I have tried flying but I still need assistance and cannot engage in active vacations.  While I would love to go on ski trips, hiking trips or even trips to other cities, it would just be impossible for me. 
  3. It is beneficial to discuss your travel plans with you doctor: Hopefully you have a close relationship with a doctor.  Mine is with my rheumatologist and I would not feel comfortable traveling unless I discussed my plans with her, especially if I was thinking of going abroad.  Talking with your doctor wil ensure that you will take any precautions necessary (e.g., vaccinations?) and it might also help you locate a local hospital, just in case.
  4. You should pack all your essentials: Before all else, make sure you have packed all your medication.  It’s no fun trying to secure your meds in another state or country, and sometimes, it might not even be possible.  Try to keep a list of your medication with you at all times if you can.  Other things you should pack are things that help you through the day.  For example, I always pack Ricola cough drops. They help me through nausea and I am never without them.  If you are flying, it’s also a good idea to make sure you carry these essentials with you on board. 
  5. Do not hesitate to take advantage of the necessary assistance:  Just because you don’t look sick, doesn’t mean that you don’t deserve some of the assistance provided to those who do look visibly in need.  If you are taking a road trip and need to park at a handicapped station, you should get a pass before hitting the road.  For me, flying for the first time was a real challenge, and it still is.  The airport is very big and I would not be able to navigate it on foot.  Almost all airlines provide for wheelchair assistance.  I was a little embarrassed at first but I really needed it.  Also, most allow you access to priority boarding, which helps immensely. 
  6. It is essential to schedule in breaks: It’s hard to stop to rest when you are on vacation and your travel companion(s) are counting on you.  But before you get really sick, it is necessary to schedule in as many breaks as you can.  You don’t want to miss out on a bulk of your vacation because you did too much the first day. 
  7. You need to allot enough time for your activities: It takes me 3 times longer to do something that a healthy person can do.  When my family went to Disney World, I was in my 2 year olds schedule.  Between all the naps/rest and slow walking, it took us 3 days to do one Magic Kingdom.  The pace worked for us. 
  8. Try to enjoy your vacation: When you are in pain, fatigued and sick, it’s really hard to enjoy anything.  Let alone a fun and packed vacation.  This gets me down but I try to be in a place of gratitude and enjoy my vacation as much as I can.  This might mean restraining from more active parts of the day, resting more and avoiding certain times of the day.  Nevertheless, I try my hardest to find enjoyment in it.  Otherwise, what’s the point? 
  9. Give yourself enough time to rest before and after your trip: It used to be that I could work before and after my trip.  This is no longer the case.  Notwithstanding the fact that I am no longer able to work, I have learned to really take it easy before and after my trips.  While this does not ensure me a better outcome, not resting definitely means I will be really sick. 
  10. At the end, assess your vacation:  Everytime I travel, I learn something new about me and my condition.  I learn what I can endure, what’s enjoyable and what I will want to experience again.  I also take note of what helped and what didn’t help me. I cannot take any experiences for granted since my body does not give me much room for failure.  It cannot cushion mistakes as a healthy body can.  And since my body is my best teacher, I try to listen and learn. 

I am always learning and would love to know what tips you have for making successful travels with lupus, and/or other chronic illnesses.

10 thoughts on “10 Tips for Traveling with Lupus

  1. pollopicu says:

    Hey, hope you don’t mind I follow you here instead!


    1. Hi!! I was sad to see you leave IG but am glad we can connect this way 😊


  2. pollopicu says:

    Of course!.. and I honestly prefer blogs over social media sites. I felt instant relief the second I deleted my account. Call me old-fashioned.

    I have your blog on my toolbar so I can check it regularly! 🙂


    1. I’m glad we’ll be in touch. I try to write on my blog weekly 🙂


    2. Have you deleted your blog?


  3. pollopicu says:

    You mean instagram? if so, yes.


    1. @pollopicu yes! 😂


  4. kgreene86 says:

    Great article! Very timely reminders. I particularly appreciated the reminders about being choosy about travel companions and destinations. It’s hard to accept that I can’t travel the way I used to/wanted to, but lately I’ve been fairly satisfied with the alternatives (and a very patient and understanding boyfriend and family). My biggest fear is to travel overseas and enter into a debilitating flare. Do you know others who have been able to travel that far and still have access to good medical care if necessary? Thanks for sharing your insights! I’d love to have you do a guest post at sometime if you’re interested.

    Liked by 1 person

    1. I haven’t traveled abroad for a prolonged time. I thought about it and I do fear going somewhere that might not be so friendly to me weather wise (too hot), or too far (Asia), or where there is a language barrier or not a good health system. I guess it boils down to that I will not be an adventurous traveler anymore. For a short time, I do think it is ok because at least with lupus, the flares are not so sudden and does need a bit of time to gather momentum. So it might require more planning, like waiting for a relatively calm health period, where the flares don’t involve the organs. For a longer trip and/or an adventurous one, I’d make sure I know of local hospitals/procedures. Also, there is traveler insurance that will fly you home for medical emergencies.


    2. Yes, and definitely would love to do a guest post 💜


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