Traveling with Lupus
When I was 20 years old, I was diagnosed with Lupus. Over the next 10 years, I lived in denial suppressing it and pushing through with life. Living with a chronic illness requires you to make intense adjustments to your everyday life, and if I wanted to continue traveling, I’d have to own it and do what works for me. The following tips have truly helped me:
Get There a Few Days Earlier
While I still love solo travel, most times I’m traveling with at least one other person. Because I work remotely, I have more flexibility. On a recent trip to Paris, I decided to get there three days earlier than my friend. This was strategic. It allowed me time to recuperate and rest. A day of traveling can easily knock me out. By the time, my friend arrived I was rested and was ready to take on Paris activities. While it was a bit annoying to have to spend my first three days in Paris “resting”, I knew the long term goal. I spent most of my time in coffee shops in the neighborhood and reading. In this particular case, I was staying with a friend so the housing cost was not a factor. So if you have the flexibility and it makes sense financially get to a destination a little earlier, even if it’s a few hours.
Pack Light and Be Organized
I’m a notorious over packer. However, stress is a huge trigger for my Lupus. One of the things that cause immense stress is lugging around heavy luggage and frantically searching around for things. I now confine myself to a carry on and a book bag. I sit and make a list of essentials. I organize an insert that I can place in the back of the seat in front of me that includes my headphones, medication, tea bags, antibacterial wipes. Items like an electronic travel organizer is a lifesaver.
Get a Medical Bracelet.
Getting a medical bracelet is still on my to-do list, but having one is especially important if you travel alone. On a medical bracelet, you can add relevant information like your name, date of birth, allergies, and medications. You should wear this at all times. Most are waterproof and you can customize the design with American Medical ID. You can get one for as little as 35.00 dollars or as expensive as $500 if you want fancy silver or gold.
I take a lot of medication daily, I have this organized in pill pack by day and time. I also set a reminder on my phone. Some medication, like Prednisone can have severe effects if a dose is missed. I learned this the hard way during a trip to LA a few years ago, I forgot my Prednisone and didn’t think it was that big of a deal. I got REALLY sick and didn’t realize that was the reason until I followed up with my Rhuemo a few weeks later. I’m alive, but missed dosages is nothing to play around with. Also, never pack meds in checked luggage, keep it with you at all times. Also, keep a ship ready box of meds labeled with a close family or friend. In case medication is lost, you can have someone overnight it to you. This is a cost you may want to consider.
Contact TSA’s helpline 72 hours before your scheduled flight. The TSA Cares helpline provides travelers with disabilities, medical conditions, and other circumstances, assistance during the security screening process. If you require security screening accommodations or have any concerns about the screening process, TSA Cares can coordinate assistance with a TSA passenger support specialist who can provide on-the-spot assistance at the checkpoint. Also, you can apply for TSA pre-check. You want to always be mindful of preserving your energy. And if you don’t have to remove your shoes etc. that can save a lot of energy! There is a fee, but if you travel often it could be worth it.
Communicate with your Friends.
This is a hard one. For 10 years, I barely talked about it and now I’m starting to be more open. It stills feels uncomfortable. But people can’t help you if they don’t know how to help you. This is especially important when traveling with a group. Now, I have a conversation about my severe symptoms and perhaps activities I can’t do. I explain that my symptoms are unpredictable I may be full energy and then crash severely and need to rest. I also make it clear, they don’t need to cancel activities when this happens. It’s about creating a balance where your friends know how to help, but also so that everyone has an enjoyable time. I have situations where when I didn’t take the time to explain my symptoms, my friends felt they were doing something wrong, and it had NOTHING to do with them.
Get Rid of FOMO.
There’s a lot of pressure to maximize the day when traveling, which can be challenging with fatigue. So don’t over plan! I’m a notorious planner so this is hard. I started to just do group activities because having no plan stresses me out. I might do group activities with “cultural” “sight-seeing” etc. Then each day, you can decide what makes sense based on how you feel. You might consider traveling to places like islands, where you’re supposed to rest. Places like Europe requires a lot of energy so please keep that in mind when deciding a destination.
Be kind to yourself. It’s ok, you might not be able to do everything but appreciate the moments you have and be very present for them.
Do you travel with a chronic illness? What are your most helpful tips? Let’s discuss in the comments box below!
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