Traveling with Fibromyalgia

I’ve been thinking about fibromyalgia the past few days. Usually I don’t, because I’m occupied with other things. But once again I am feeling the need to do some emotional work. It has been an ongoing task, dealing with the emotions that are triggered by having this chronic condition. I’m feeling good and have been able to be active, but every time I say those words I feel I need to qualify them. I’m feeling good for me and being as active as my body allows – which makes me happy.

I think I need to cry a little because…   well, because our trip to Eastern Canada was so successful and so much fun. After we were on the road, Jim told me he had been afraid to take this trip with me. In fact he thanked me for dragging him along. It was the first long camping trip we’ve taken since I was diagnosed and he didn’t think I would be able to do it. During supper tonight he once again told me he was glad that I did so well on the trip because he had been afraid to go. I hadn’t allow myself to recognize my anxiety before we left but I now know that I was pretty stressed. I guess I live in a constant limbo between fear and desire.

In the weeks leading up to the trip I wanted to believe I could do it because I had gone to St. Petersburg, Russia in the first year after diagnosis and to Kyrgyzstan three years ago. But those were different. I didn’t have to do any work on those trips; work like setting up the camper and taking it down. I didn’t have to ride in a truck every day for over three weeks. Those trips were only two weeks long and this was going to be three weeks or longer. And I didn’t have my old doctor to help me prepare physically for the trip although I did get my new doctor’s help. But I had to tell him what I needed because he doesn’t know me yet, and because he hasn’t been following me through my getting better years. He couldn’t suggest things to do – like my old doctor did. I’ve been angry at my old doctor again but I’ll get over that.

I’ve been thinking about what I did to make the trip successful. It seems like everything I used to do now takes more planning and more care. I like being spontaneous but being too spontaneous with fibromyalgia can mean falling on my rear for a day or a few. Here are some of the things that made our trip work.

I increased one of my meds from 200 mg daily to 250 mg. I have some side effects that I don’t like at the higher dosage but it also results in decreased pain. I asked, and my doctor wrote a prescription for two months because I knew I didn’t want to take it any longer than needed. I started it about three weeks before we left and stopped a few days after we returned. I take two medications specifically for FM and I could trust my old doctor to know how each one worked in my body and to suggest the one to increase or decrease as my life fluctuated. I miss that but I have been paying more attention to how my body reacts and it is probably good that I am now taking more responsibility for this. I also increased my use of OTC pain relievers while we were traveling.

Gas Station Flowers

I paced my activities. We share driving and I like the change of pace that driving provides. I let Jim know when I couldn’t drive and I offered to drive during my best times of day. I also requested frequent stops and when we stopped I did a little walking. I have found that walking just 10 minutes a day decreases pain. When we stopped for gas I got out of the car and frequently used this time to wonder off a ways to take a photo or ten.

We ate well. We eat out of our frig for most meals when we travel with the trailer. I find that I do better if I have small meals, with a balance of protein and complex carbs, and low fat. What I eat makes a difference in how I feel but I haven’t wanted to complicate my life with complex diets. Cooking our simple meals worked better than the crap shoot of eating in restaurants (my husband’s words).

The only “special food” I use is whey protein powder. We ate cereal for breakfast because it was fast and easy before we closed up to move to another area. Wild blueberries were in season and I would sprinkle some of the vanilla flavored whey protein on my cereal and blueberries before I added milk. Sometimes I mixed it with milk to drink if a needed an energy boost. It is marketed for muscle regeneration after exercise.

Lunch was our favorite meal because we stopped along the road for easy to eat, nutritious foods out of the frig. We could always find a place to pull over – even in church parking lots that gave me an opportunity to also take pictures of architecture.  Supper was also almost always eaten at our campsite. I had taken some frozen soup in zip-lock bags and we purchased food along the way. Planning our suppers together and shopping for food was a part of the fun. And of course if we discovered a fun opportunity to eat out we took advantage of it.

We took rest days. After the first four days of travel, I told Jim that I needed to take a rest day which meant that we stayed in the same campground for two nights. That day was spent blogging, reading and napping.

View outside my window – Cape Breton Island. Rest!

The first time I asked for this I felt guilty, but it turned out that Jim needed and enjoyed it and this became a part of our routine. I took responsibility for letting him know when I needed it, however. I have learned how much physical exertion my body will tolerate and how stress impacts on my functioning so I could factor those things into the equation of when we moved and when we stayed put. We did some sightseeing on our rest days (or laundry) but not having to take down and set back up reduced my work load and thus muscle pain and fatigue.

We travel light. We didn’t take any more than we absolutely needed to be comfortable. Everything extra that we take and use when camping requires more work. If we questioned whether we should take it we left it home. We also planned ahead and did our food shopping before we stopped for the night so frequently we didn’t have to unhook the truck. That meant that Jim could pick up some of the physical work that I normally did because his work load was lighter. We have learned to travel smart when pulling the trailer.

The other side of traveling light is that I took those things that help with pain and fatigue. Getting a good night’s sleep is the number one most important thing I do to feel good so we sleep in separate beds. I took a memory foam topper for my bed, we took down comforters to keep us warm at night, and I used my c-pap machine every night. My exception to traveling light was that I took more clothing than we actually used because I wanted to be sure I would be warm enough if the weather was cold. I had silk long johns, gloves, ear muffs, a scarf and lots of layers of clothing. If I get cold, I hurt. Of course we also needed warm-weather clothes because when I get too hot I experience fatigue.

Plan ahead to avoid problems and stay flexible to deal with problems. One of the things I really enjoyed about this trip is that we had a general plan of where we wanted to go but we also knew we had the time to be flexible. In fact the parts that were the most enjoyable were those where we didn’t have to be someplace at some specific time – we could move at our speed. Having to monitor how fast we went or how slow we were going created stress for me. We only had a week on Newfoundland because of the ferry reservation and we soon figured out it wasn’t enough time. We realized that three weeks wasn’t enough time for everything we would have like to do. Maybe there never is enough time. I dealt with this by decided we would go again next year, in September to see the color, and start with New York, New Hampshire, Vermont & Maine. Spend some time on the Bay of Fundy, and maybe, just maybe get as far as Newfoundland again. We’ll see.

The one major problem we faced was not being able to get on the ferry to Newfoundland when we wanted to – we had to wait 5 days. We should have made a reservation but we had no idea how long it would take us to get to Nova Scotia via the Gaspe Penninsula. And part of me didn’t want to think about time and schedules and commitments. Jim was ready to scratch that part of the trip but we sat down and talked about it for a couple of minutes – well, I talked. The whole purpose of the trip was to go to Newfoundland and I wasn’t going home without that experience. We bought the tickets. We flexed our plans and some of my favorite photos and stories came out of this change.

When things get tough, we stayed in a hotel. The hardest part of the trip was the last two days traveling home. I knew they would be and I was feeling anxiety about finding a campsite along the interstate in New York or Pennsylvania. We made the decision to stay in a motel so we could drive longer and not have the added fatigue from having the work of camping. At the beginning of the trip, we decided we would use a hotel if we got into hard rain in early evening when we were ready to stop. Reducing stress results in reduced pain and fatigue.

Sunset on the Ferry – Nova Scotia to Newfoundland

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