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

The Sick Role: Restoring Our Health

network of diseases

network of diseases (Photo credit: DrJohnBullas)

In a previous blog, Being Sick & the Sick Role, I shared Parsons’ characteristics of the sick role that included: a) others recognize that the illness is involuntary, that getting sick was not the intention of the person who is sick; b) when people are sick they are exempted from their usual work, family, civic, and other obligations; c) they are expected to not want to be sick and to do what they can to restore their health; and d) are expected to seek competent help and to cooperate in the process of trying to get well.[i]

These characteristics were identified to describe how life is expected to change for people who develop an acute illness and I believe that having a chronic illness leaves us in a very strange position of both needing to use the sick role, but also needing to strongly reject it. In this post I provide my perspective on the aspects of the sick role that involve not wanting to be sick, needing the help of others and working with the medical community to restore our health.

The first, not wanting to be sick, seems self-evident to anyone who doesn’t feel well for whatever reason. I have to admit, in my BS days (Before Sickness), there could have been a few days when I wished I was sick so I didn’t have to go to work, or exaggerated a cold so I could stay home. But I don’t want to be sick to the point that I have to give up being productive. I don’t want to play hooky from life. Especially not forever.

Our culture values independence over dependency (especially for men) and achievement through work, especially paid work. But even in family relationships it is expected that everyone will pull their own weight based on age and ability. When we become sick, the sick role allows us to become dependent on others and exempt from work and social responsibilities for the duration of the sickness without being judged – but we do have the obligation to work towards getting well and returning to prior responsibilities (Kassebaum & Baumann, 1965).[ii]

Physician treating a patient. Red-figure Attic...

Physician treating a patient. Red-figure Attic aryballos, ca. 480–470 BC. (Photo credit: Wikipedia)

The sick role has the expectation that we will seek medical help so we can be treated, get well and return to our normal routines. This is where a chronic illness is much different than an acute illness. I had always gone to a doctor expecting to receive a cure or assurance that I would get better if I just rode it out. With a diagnosis that means chronic, I wrestled with what it meant to be dependent on medical help in a new way:

I don’t know how to deal with the symptoms without my doctor but also fear becoming dependent. I know this is irrational because when I feel good, I have no desire to sit in a doctor’s office. I think I can trust myself to know how to let my doctor help me while I learn how to manage my symptoms on my own. I also keep telling myself that I have a very large group of friends who love me as a “well person” but also acknowledge what I am experiencing. I spend time with them doing fun things and getting my needs met so I don’t have to depend on being sick to get attention.

I was also wrestling with whether my constant need for my doctor’s help was turning into a need to be sick. I had never been a big fan of doctors and had only needed to see one a couple of times a year at most but when I was in so much pain and was so fatigued, having a doctor help me, take care of me, felt very good. I had to keep reminding myself that I didn’t want to be sick, but I did need help in finding treatments that would help me regain my functioning. If you are reading this I can believe that you don’t want to be sick either.

The biggest challenge for me has been to figure out how to be functional with a body that is dysfunctional. How could I be sick forever and have a normal life? That was a hard sentence to write because it means that I will never be able to assume my prior responsibilities. I needed to figure out, and continue to re-figure, how to live with greater dependency, how to be content with new goals for achievement and work, and how to be content with a different level of involvement in the activity of family.

This is why I believe that the concept of “striving for wellness” at the same time as we are coping with the symptoms of chronic illness is very helpful. Here is how I described this sense of wellness in my journal a little over a year ago:

Nola Pender[iii] proposed that levels of health exist along a continuum and interact with the experience of illness. And here is the interesting part for me: “Whatever the illness experience, the individual continues on a quest for health – a developmental process… Through this developmental process, it is possible for a subjective state of good health to emerge in the presence of overt illness or disability.” Boy this makes a lot of sense to me when learning to live with a chronic illness. The authors have put into words what I have experienced. Even though I am very aware (when I think about it) that I have fibromyalgia because symptoms don’t ever seem to totally go away, I still am experiencing a subjective state of good health. How cool is that!

This sense of wellness didn’t come quickly or easily – and I didn’t always do it gracefully. I fought and I grieved and I fought some more because I refused to be sick and I didn’t want to admit that I had to give up pieces of my life. Eight years later I know my body doesn’t work right (I’m sick?) and I’ve made a lot of changes – I’ve settled into a new normal that feels like a sense of wellness. The new doctor I’m seeing has as the first question on his intake form, “Are you in good health?” I circled yes.

In future posts I’ll share how my life is different but fulfilling – and try to explain how it happened.

I would love to hear your thoughts on how you have found a sense of wellness, or wholeness, while coping with a chronic illness or chronic pain. Or maybe for you it just doesn’t seem possible – I would like to hear about that too.

[i] Parson, T. (1951). The Social System. Toronto, Ontario: Collier-Macmillan Canada, Ltd.

[ii] Kassebaum, G. G., & Baumann, B. O. (1965). Dimensions of the Sick Role in Chronic Illness. Journal of Health and Human Behavior, 16-27.

[iii] Pender, N. J., Murdaugh, C. L., & Parsons, M. A. (2002). Health Promotion in Nursing Practice. Upper Saddle River, NJ: Prentice Hall.

Doctors Not Taking Pain Seriously

do you have chronic pain?

do you have chronic pain? (Photo credit: Kate Tomlinson)

So often I hear that people go to doctors and the doctors don’t take their pain seriously. I also know that most doctors are afraid of prescribing narcotic pain medications for people who have fibromyalgia. As I have been looking for a new doctor, one that I went to said that he would be willing to work with me to keep symptoms controlled but he doesn’t prescribe narcotics for people with FM.

Here is a link to an interesting article by a doctor who experienced chronic pain after a car accident. His experience with other doctors led him to change how he practiced medicine.

http://www.webmd.com/pain-management/features/pain-doctor-chronic-pain-patient

Work & the Sick Role

I have already posted on Being Sick & the Sick Role that lays the foundation for this series of posts. I also posted on how we don’t choose to be sick, don’t look sick, don’t want to be sick, and how tricky it is to help people understand how we are sick so we can get the help we need without having them treat us like we are sick. You can find that under Who Volunteered Me to be Sick. I have a lot to say about work and chronic illness so I am breaking it down into several posts.

27/365: fractured reality/grace under pain

27/365: fractured reality/grace under pain (Photo credit: kira.belle)

When people have an acute illness and take on the sick role, they are exempt from the usual work, family, community, and other obligations while they are sick. When we get pneumonia or the flu, or have surgery, we can take some time off and in fact we are expected to do this to aid in our healing. What does it mean when we have a chronic illness where healing probably won’t happen and remissions may not last long? What does chronic and possibly degenerative mean for our responsibilities to our families, our work both within and outside the home, to our community and church work? We can’t take a few weeks off, or even a few days, to get better because chronic means forever. Continue reading

Doctors & Patients: A Collaborative Relationship

Fibromyalgia

Fibromyalgia (Photo credit: Kindreds Page)

When I developed my chronic condition the first thing that happened to my life was that I started spending a lot more time in my doctor’s office. So much time that I thought I should be collecting frequent flyer points towards a free office visit. Or I should be given my own examining room with a recliner, a stereo system, and wet bar – and stocked with my favorite magazines. The nurses kept telling me they were working on it in the basement. What I received was a lot of time to read novels while I waited and time to think about this relationship that was forming. Through these frequent visits we learned how to work together and formed an excellent working partnership. In a series of posts I will be sharing with you what I believe made our relationship work so well and especially what it was about the relationship that contributed to my healing.

Originally I had written a section on what patients need from a doctor and then another section on what patients need to take to the relationship. As I was editing them for posting I realized that our relationship worked because we each brought complimentary qualities, knowledge and skills. We were collaborative partners with a shared goal of controlling my symptoms and increasing my functioning. According to Robin DiMatteo,[i] patients are most satisfied with partnerships rather than authoritarian control by the doctor because partnerships allow us to participate more in healthcare choices, leading to more informed decision making, better follow through and adherence to the treatment plan, and ultimately better health and quality of life. Continue reading