Warning: this post is gonna be real. But I want to share so that others traveling with chronic illness can gain confidence.
There may be only a couple dozen or so people in my life who know my secret. It’s hard for me to talk about because it was one of my darkest points in life and continues to be an all day, every day struggle. I don’t want anyone to ever think I can’t do something because of my illness or worse, that it doesn’t exist. So I keep it at a secret because I know what my body can do and when it’s had enough.
15 years ago I was diagnosed with Chronic Fatigue Syndrome, or to be more specific, Postural Orthostatic Tachycardia Syndrome (POTS). At 13, I had a horrible week with Bronchitis and never bounced back. After many a doctor visit with a lot of skeptical doctors, I was diagnosed.
Living with my new illness was tough. I barely made it a full week at school and even if I could make the whole day, I couldn’t handle the after school activities. Friendships definitely struggled. I pushed a lot of people away because it was so hard for me to explain what was going on and how I was afraid I was going to feel like this my whole life.
I’ve found a good balance of prescriptions, eating healthy, and learning to listen to my body. Although there are still days when every ounce of my body hurts and I just can’t, I’ve managed to make it work. I’ve traveled all over the world with this body and it’s entirely possible for other people to.
Plan, Plan, Plan
Pick a vacation based on what you can do. If you aren’t very active, pick a resort or even a cruise where you won’t need to do as much walking. Road trips can also be a great idea – a road trip through Scotland and Ireland is definitely on my list.
Plan activities based on your activity level. Horseback riding in the desert works for me, but a bike tour in a hilly city might not. If you’re not into walking long distances, also consider taking public transportation or Ubers to your destinations.
Stock up on Prescriptions
When you’re traveling, make sure you have enough prescriptions ahead of time. If you’re traveling for a long period of time, know when & where you’ll be able to get your prescriptions again. I personally do a 3 month mail order pharmacy that gets forwarded to me through my job.
If you’re a diabetic and need to refrigerate your insulin, call ahead to the hotel to make sure you have a fridge in your room (or in worse cases, there will be a fridge somewhere in the hotel). Same if you have a special diet and it’s easier to prepare your own meals.
If you use any over-the-counter medications, I also recommend stocking up if you’re traveling internationally. Don’t assume you’ll be able to get the same thing where you’re going.
On the Plane
Pick a seat where you’ll be comfiest. I’ve learned on long flights that window seats are no good for me – I need to be able to get out and walk around as much as possible. I hate having to wake up the aisle seat, so now that’s the seat I choose.
I also drink A TON of water, which works two-fold. One, I stay hydrated since they always say planes dehydrate you. Two, it makes me need to use the bathroom often so I’m not staying in the same position for too long.
Listen to your Body
You don’t have to do everything in the places you’re traveling. I have taken so many naps infamous places – the gardens of Versailles, Westminster Abbey, etc. because my body said it needed a break. Traveling on planes, trains & road trips, were also great nap times.
If you need afternoon naps, that’s ok. Plan your day around it. Or call it a night early.
It’s OK to even have a whole day where you stay inside. Don’t feel guilty, you are already doing an amazing thing.
Try to Keep a Routine
I’ve found that eating healthy and working out help with my CFS. So I always try to go to the grocery store the first day in a new city to pick up breakfasts for the week and snacks that make me feel good. I scope out the hotel gym and change my workouts based on what I’ve got. If I know I’m going to be doing a lot of walking, I might not workout that day.
Get your Sleep
If you’re going to have an early day, go to bed early. If it’s more flexible, enjoy the nightlife. Just make sure you get the sleep you need.
Avoid Illness (as much as possible)
Due to my condition, I have a horrible immune system. Allergies will easily turn into a sinus infection. If there’s someone on my show with a cold, I will probably get it. With an already weakened immune system, there’s a good chance you could catch something on the plane or around crowds in a new place.
I like to use Flonase everyday since I’m constantly in new places with new trees and flowers that my body isn’t used to. If I feel something coming on, I’ll use a Neti pot and start on allergy meds or Mucinex.
For colds, Zicam or Cold-eeze are good for the start of a cold and then from there I’ll get out the big guns. I like to be pretty aggressive so it doesn’t get worse.
If you need to see a doctor, walk in clinics have worked out pretty well for me. I even went to clinic in Canada and paid up front (total with prescription $150 CAD).
You Can Backpack (just lighten your load)
Backpacking through Europe was a little scary for me. I wasn’t sure how I would handle carrying a heavy backpack from city to city. So I found a backpack that was small enough for my 5’1” height and really limited what I brought. I was traveling with a friend so she carried heavier shared items like toiletries.
Don’t be afraid to get out there and travel. There is an adventure out there for everyone. Plan ahead and listen to your body and you can do this.
You can read my guest post on my hacks for traveling with chronic illness here.