Wednesday, November 05, 2014

The Perils of Traveling with ME/CFS

In front of Jackson Square, our first day
On September 30 this fall, my husband and I celebrated our 25th anniversary. We had planned a long weekend trip to New Orleans, where we used to live when we first met, dated, and married. We were excited about the rare getaway on our own, but I was also very anxious about various aspects of the trip and worried about how I would handle it all. I've written previously here about my strategies for managing air travel and about how well I usually do on our annual summer camping vacations, but I knew that a city vacation had its own unique perils. To make matters worse, I hadn't been feeling well during the two weeks before our trip - not totally crashed but not good either. As is sometimes the case, whatever could go wrong did! Here are some of the things I was concerned about and what worked (and didn't work) on our trip....and some of the things that went wrong that I hadn't anticipated!

Plain and simple, the biggest worry of all for those of us with ME/CFS, no matter where we go. In this case, I was particularly worried because New Orleans (and most cities, I suppose) is a walking city. 

As I knew would be the case, we did a LOT of walking - we walked to meals, wandered the French Quarter, walked while shopping and sight-seeing. We occasionally took taxis and used the streetcars a few times (a lovely form of transportation in New Orleans), but we still did a lot of walking. I knew, based on how I'd been the previous two weeks, that I was doing too much, but I felt like it was our 25th anniversary. I wanted the trip to go well, and I didn't want to ruin it for my husband.

Ha! What's nightlife for someone who goes to bed by 10 pm every night? Yet, New Orleans is a city for night owls. Walking around the French Quarter, we passed a nightclub (and I use the term loosely) called The Dungeon where we used to go with friends many years ago. It doesn't even open until midnight! So, yeah, that was out. There are a lot of live music venues in the Quarter, but most are crowded, many are standing room only, and all are very noisy. Thankfully, my husband didn't want to put up with the loud noise, either, so that worked out OK. Most evenings, after dinner, we just walked around a bit, peeking into shops, taking in street performers and the other (ahem) sights of Bourbon Street, but I couldn't handle much walking at that time of night.

One thing we did that worked out great was to visit Pat O'Brien's famous piano bar. We went in at about 8 pm, so there was no line (a benefit of going to bed early!) and got a seat at a crowded table right near the two pianos. No, I didn't order any Hurricanes. But I did come up with a brilliant idea, since I can't have alcohol, caffeine, or sugar, which leaves me without many choices in a bar! I ordered Bloody Mary mix without the vodka - I not only had a fancy drink to sip on, but tomato juice is loaded with sodium, so it was helping my Orthostatic Intolerance as well!

We had a blast at the piano bar. They played and sang a wide variety of music, everything from 70's ballads to 80's rock to current pop songs, with a smattering of oldies and classic New Orleans' tunes. We had a lot of fun singing along. I was starting to wear out after about an hour, but we stayed for almost 90 minutes.

And as for being back in our hotel room by 9 (sometimes 8:30) every night? I apologized to my husband for being such a party pooper, but he reassured me he was worn out and ready to go back, too!

You would think that after 12 years of living with this illness and taking piles of pills every day, it would be impossible for me to forgot my medications. But apparently, it's not. Despite my repeated checks before we left home that I had all my meds packed in my carry-on, plus all the over-the-counter stuff I might possibly need, when we arrived at the hotel, I realized I forgot the most important medication box that I have: my bedtime meds. These include the medications I take to correct sleep dysfunction, allowing me normal, refreshing rest at night (extra important on a trip); my beta blocker that keeps my heart rate down to normal levels so I can walk and be active without crashing; and my birth control pills which hold my hormone levels steady to prevent migraines, as well as the obvious function of preventing my period (which makes me crash). I was panicked - a 4-day trip without those essential medicines would be a disaster.

So, we spent much of the first 24 hours of our anniversary trip trying to replace my meds. During our first dinner out, I had to excuse myself to talk to the doctor on call to explain my predicament. Of course, it was a Saturday night, so there were no pharmacies open until 10 am the next day. The next morning, I was on the phone again, back and forth with the doctor and the pharmacy. I had to wear my heart rate monitor and be careful, as without the beta blockers, my heart rate was much higher than normal.  Finally, my meds were ready to pick up...but they were out of stock of one of them which had to be ordered from another Walgreen's. We took a cab to that drugstore and finally - around noon on Sunday - had all my meds again and were able to resume our vacation. But the damage had been done - a night without good quality sleep and hours of walking without beta blockers had already taken its toll.

One of many amazing meals!
Food, oh, the food! This is one of the primary reasons to visit New Orleans, and we had many favorite restaurants we wanted to visit. Seafood, desserts, local specialties - there is just so much to enjoy there! I am dairy intolerant and have been on a Paleo diet (no grains, no dairy, little sugar) since February. In some places, especially with main courses, it was easy to stick to my dietary restrictions - fabulous fresh fish or shrimp with local vegetables or a salad is what I would have ordered anyway. When it came to dessert, I threw all the restrictions right out the window. That double-chocolate caramel bread pudding the first night was well worth the stomach upset later! For our anniversary dinner, we treated ourselves to a superb restaurant that we went to when it first opened 24 years ago. We thoroughly enjoyed the food on our trip, though I'm sure ditching the diet (and especially the sugar and dairy restrictions) contributed to my growing exhaustion and my later problems. I did really miss sampling all the fabulous beer and wine in New Orleans, though, especially since I was young and healthy when we used to live here - it was hard to compare my current circumstances with the times we used to spend in these places, before ME/CFS, and sometimes a bit depressing for me.

Unforeseen Circumstances
All of these were things I'd more or less foreseen and/or worried about, but by Monday, another common travel issue took me by surprise. I woke up Monday morning with a tightness in my chest and a mild cough. For me, that means just one thing: bronchitis. The classic immune dysfunction of ME/CFS makes me extra-susceptible to bacterial infections, and those symptoms ALWAYS lead quickly to bronchitis for me. I don't know whether I picked up a germ on the plane on the way down or already had it in my system when we left home, but by the time we flew back on Tuesday, I felt truly awful, with chest congestion and a cough, coupled with crushing exhaustion and aches. I ended up with an extra-nasty case of bronchitis that didn't respond to the first round of antibiotics and turned into pneumonia. I finally got rid of those infections a few weeks ago but then was left with a bad flare-up of yeast overgrowth from the antibiotics - despite taking all kinds of precautions - that I am just now recovering from six weeks later.

So, all in all, it was a difficult trip for me, though there were certainly things that I enjoyed. It was good to be back in our favorite city but also hard for me to be there as such a different person than I used to be. Travel is difficult under the best of circumstances, and several things on this trip went wrong. I definitely do better on our camping road trips, where we bring our own little home on wheels with us and go at our own pace. We have wanted to go to Europe for years (though we can't afford it right now because all our money goes to medical expenses!), but this short trip to New Orleans reinforced to me how difficult it is for me to travel in this way - airplanes, cities, hotels, walking, etc.

What have been your experiences with travel? Do you have any tips for making things easier?

Our 25th anniversary dinner at Bayona, an old favorite


Angie said...

I had to face a hard truth that in order to continue traveling, or otherwise go on an outing that required extensive walking, I must purchase a wheelchair. After an initial mourning period, I realized after its first use just how freeing it was! With my husband's help as chief pusher, navigating malls, airports, and vacation destinations, I was no longer stuck pivoting about the house in self pity at the loss of my independence over this illness. Because of my new wheels and I no longer have those major post-vacation crashes.

Sue Jackson said...

Glad to hear the wheelchair has worked so well for you, Angie, and helped you to be able to travel more!