My India Travel Tips (or, how to survive India with fibromyalgia, chronic pain, a food allergy, and a CPAP)

I recently returned from a lengthy trip to India and Japan. Both trips revolved around learning about traditional medicinal practices, although each trip had a different purpose to it. In India, I was participating in a faculty seminar offered through SIT on Public Health, Community, and Healthcare Systems in India. Traditional medicine was an integral component of the course, and I had the opportunity to meet with practitioners of Ayurvedic and Tibetan medicine. In Japan, I was conducting a site visit with a colleague for a course we will be teaching at Grinnell College next spring on Global Medicinals. The course will include site-based learning in the UK and Japan. This trip we met with practitioners and researchers of Kampo and other local medicinal traditions. I promise to write posts about all of these modalities and what I learned about them. For now, I want to share more practical information about the India trip.

Have CPAP, will travel:

Last fall, I was diagnosed with a sleep disorder and prescribed the use of a CPAP. I still cannot believe the change it has made in my life. Not only am I sleeping better, but so is my spouse, as he is no longer tormented by my impressive snoring. As my trip approached, I considered leaving the CPAP at home. It’s large enough to require its own bag, and the travel-sized ones didn’t seem to save that much space, plus they cost a lot. Ultimately, I decided that it was worth it to take the CPAP. I’m happy to report that it was definitely the right choice. I slept better on the plane and in the hotels. Probably so did the people around me.

Traveling with the CPAP required a bit of extra planning and effort, though.

First, you have to think about battery power. Airlines won’t permit you to plug the CPAP into any outlets on the plane. I also was going to be spending a night on a train, and didn’t think I should expect the outlets to be accessible. In the hotels I could plug the device into my outlet adaptor, but two of my hotels turned out not to have outlets near the beds. All of this confirmed the wisdom of purchasing a single battery for travel.

My only complaint about my lovely cottage at Kayakalp was that I couldn’t get my outlet adaptor to work.

After researching the options, I purchased the Medistrom Pilot-12 Plus from Amazon.com. This version came with the appropriate cord and plug for my CPAP, the Respironics DreamStation. The reviews seemed mostly positive, especially given my needs. For example, I left the humidifier at home. I wanted to reduce the weight of my bag, and I was wary of the available water supply I would have while traveling. This made the size of the CPAP not a whole lot larger than the travel-sized options and it reduced the amount of power needed to use the device.

I found I could use the battery for about 6-7 hours per night for two nights before it needed to charge. The only problem I had with charging was remembering to do it while I was in the room, since most hotels required you to leave the room key in a special slot to activate the power supply. This meant I could not leave the battery charging while I was out for the day. But this really was just a matter of thinking ahead. Next time I also will leave the regular power source and plug at home, too, and just rely upon the travel battery.

The only real caution I would give about taking the battery to India is to think about the weather. For example, I could not leave the bag in the car without risking the battery overheating. This meant that when it came time to check out of the hotel and think about where to leave bags before heading to the airport, I had to ensure that the battery bag would be in an air conditioned location. Not a big deal to work around, just one of those things it’s important to remember.

Second, traveling with the CPAP and the battery required a talk with the airlines in advance of the trip. I cannot remember how I figured out that I needed to do this. But each airline listed a CPAP as a medical device needing preflight clearance. Look for the information on the airline’s website. If you cannot find it, contact customer service or their line for those passengers needing special/disability assistance. In every case, they wanted to know the type of CPAP and battery that I intended to bring. I found this information on the devices themselves and their user manuals. This all took some time, but ultimately was not a difficult step to complete. When I arrived at the airports, however, I found that all was not settled because…

Third, despite making the advance phone calls, all of the airlines and airports still required some amount of extra screening at the airport. I could not check into any of my flights online in advance because all of the airlines wanted to confirm my device at the airport. Cathay Pacific at Indira Gandhi International Airport tried to deny me the ability to use the CPAP during the flight, but I was insistent that permission had already been granted. They called a supervisor, who reviewed the user manual for the battery and CPAP (fortunately I had brought both with me!), confirmed they were listed as approved devices, and then gave me permission (again) to use them. United Airlines employees at the counter in Narita Airport seemed to be confused on what the policies were. It took at least fifteen minutes for the staff to review how to confirm that it was okay for me to use the CPAP and battery on board. Chicago TSA was the only security team that required me to take the CPAP and battery out of the carry-on bag for screening. In other words, there is no simple way through this. You have to have the time and the patience (as well as the determination) to get it all sorted on site.

Finally, think about your seating on the airplane if you plan to use the CPAP onboard. I quickly realized on my Air Canada flight that squeezed between the man next to me and the window, I was going to have a difficult time getting out the CPAP to use. I pointed this out to a flight attendant and she moved me to a window seat without someone directly next to me. I definitely needed this space. And being in the window seat gave me more privacy than I would have had on the aisle. There was one man who did a double take when he saw the tube that seemed to be coming out of my head, but otherwise, I felt I could turn towards the window, put a light scarf over my head to block out any light, and sleep in peace.

At the Taj Mahal, about thirty minutes before I melted. The scarf is an attempt to keep the sun off my head. I’m not sure it helped keep me any cooler!

What about the rest of it?

I don’t have a lot of advice for managing arthritis, chronic pain, and/or fibro. As anyone who has any of these conditions knows, it’s all so individual. Probably the most important tip I have is to spend time thinking carefully about what you need to prevent/reduce pain and what you might do if you have a bad day.

I was very worried in advance of the trip that I would have a major fibro flare and be a wreck and that it all was a big mistake. Turns out, I was fine. In fact, I didn’t have a fibro pain flare the entire time I was in India. Yes, I was very tired at times, but with everyone jet lagged, this wasn’t unusual. And there was one occasion when the 116+ F temps at the Taj Mahal prompted a meltdown that was part fibro, part heat exhaustion. But, really, who could blame me for that? In fact, my companions all thanked me later because it meant we were ushered into a blissfully air conditioned gift shop. The combination of sitting under an air conditioning vent and in front of a fan, using one of my calming mantras, and sipping the most satisfying Sprite of my life, (I felt I needed sugar and salt in addition to the water), helped me recover. So, too, did retail therapy. I mean, since we were in a gift shop, and the owner was being so gracious, how could I not buy something(s)? After this, I tried to be better at listening to the messages my body was sending me and to advocate for myself. In retrospect, I could pinpoint the moment I knew I was crashing, but I didn’t speak up. Perhaps if I had, I could have avoided getting sick. Then again, had I done so, we wouldn’t have gone to the awesome gift shop!

Another thing I was really worried about pre-trip was the toilet situation. If squatting was the only option, and squatting is hard on me, how would I manage? It turns out that while the bathrooms in India are quite different from those in the States, there usually are “western-style” toilets available, too. There might not be toilet paper, or clean water to wash hands with, or soap. I packed a little toiletry bag that included tissues, flushable wipes, and antibacterial sanitizer. This came in handy at least once a day.

Sometimes the choice is obvious.

When I return to India in the future, I plan to do a few things differently. I will be very specific about my accommodation needs and research hotels and other locations carefully. I also will be sure to have protein bars with me. The food was all delicious — and I had no problems with my cilantro allergy! But there were times when I could have used a bit of a boost between meals. I also will be more mindful of needing “down time”. I didn’t need to go back to my hotel and rest as much as I needed time to sit in a quiet air conditioned location and just relax. All of the traveling in the heat in less than luxurious vehicles took a toll. Finally, rather than collapsing into bed exhausted at the end of each day, I will incorporate meditation and stretching. India was not only physically taxing; it also was a lot to process intellectually and emotionally. Taking care of those needs will go a long way to maintain the balance I need to remain healthy.

So, that’s all the thoughts and advice I have at this point. The trip was incredible. I am so glad I went, and I do hope to return someday.

Namaste.

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