“Living with chronic pain can feel like you are a raggedy doll, tossed about by conditions beyond your control.” So writes Deborah Barrett in her wonderfully helpful and practical book, Paintracking: Your Personal Guide to Living Well with Chronic Pain.
In Paintracking, Debbie explains a series of concrete tools to help you become your own expert at what helps and what hurts, so you no longer feel that your life is beyond your control. It’s a powerful…and empowering book.
Here’s my recent conversation with Debbie:
Toni: I know from your book that you suffer from chronic pain. When did it start?
Debbie: June 1994. My story is like many others. It started with aches and pains which intensified and spread. I was working passionately to finish my dissertation in sociology. Within a small space of time, the pain seemed to migrate throughout my body. But then, I wouldn’t have guessed or believed the pain would become “chronic.” As you know from your experience, our body can really surprise us.
Toni: “Surprise” is a great word, Debbie. In my case, I kept thinking, “Who doesn’t recover from a seemingly routine viral infection?” So I’d wake up every morning expecting to be better and was surprised when I wasn’t.
Debbie: Isn’t that the kicker? When you start to realize that you are going to have to approach your life in a different way…
Toni: Yes and it’s fascinating that we’re taken by surprise because, after all, we’re in bodies and they’re subject to illness and injury—and of course, aging. It happens differently for everyone, but inevitably, it happens. Yet most of us are completely unprepared when it does. How long did it take for you get diagnosed?
Debbie: Oh I received many diagnoses. Let’s see… Carpal tunnel. Disk problems. Hysteria [laughs]. Many of the doctors I saw dismissed my symptoms. The pain got so bad I couldn’t hold a thing in my hand. Even the weight of my clothing and bed sheets burned. I deteriorated for months before receiving the diagnosis of fibromyalgia and myofascial pain syndromes. In those days little had been written about either one.
Toni: Was it helpful to your mental and emotional state to be diagnosed?
Debbie: Not at first. I remember going to this wonderful doctor in Baltimore and begging him to tell me I didn’t have fibromyalgia. I prayed that all my pain was from myofascial pain syndrome because I had read that, unlike fibromyalgia, it was curable. The doctor, who had fibromyalgia, told me that even if I had fibromyalgia, my life would not be over.
Toni: Did you believe this?
Debbie: That’s the funny thing. I didn’t. The pain was so intense most of the time—it didn’t feel livable. But then, out of the blue, I had moments in which I felt that someone must have turned down my pain dial. I would think, okay, I can live with this! I would even start to wonder if I had exaggerating the whole thing. But then the pain would return with a vengeance. Boy was it depressing. Plus I felt so confused
Toni: So, fast forward. How does this relate to your book, Paintracking? And to its approach?
Debbie: It has everything to do with it. I realized that if I could understand the reason for these changes in my pain then I could control it. So I began collecting and analyzing data on my own experience. This process led to my improvement and is the basis of the book.
Toni: So now you have more control over your pain?
Debbie: Without a doubt. But not exactly in the way I had thought. I don’t live a pain-free life, but I understand my pain. I can predict it. I have lots of strategies to increase my comfort. So I can plan. I can decide the kind of day I have.
Toni: What advice can you give to readers who hurt all of the time?
Debbie: Great question. When people say their pain is constant, I ask about their worst moments. Everyone has times when they feel worse, which means they also have moments that are less bad, or better. So look for your variation, and learn from it. Little by little, you can increase the duration and frequency of your better moments. And these stack up.
Toni: I love that idea, “Look for the variation.” It sounds like you’re saying that we should put ourselves to work as our own researchers. And…experiment.
Debbie: Precisely. Plus, when you adopt an experimental mindset and treat each day as an opportunity to learn, then even your worst days or moments provide important data. Does this relate to your experience.
Toni: It resonates strongly with me even though pain isn’t my principal symptom. I feel sick—as if I have the flu. But when I put on my “researcher” hat and pay close attention to my activities, I’m able to recognize what I do that exacerbates my symptoms. Then it’s a matter of mustering the discipline to avoid those activities whenever possible. I’ll add, though, that sometimes this investigating and researching can be exhausting in itself. What can you say to readers who are too exhausted to even think about doing research?
Debbie: I understand! Keep it simple. Very simple. Conducting research can be as simple as making two notations on a calendar. Maybe one to capture how you feel (a number or doodle that represents your level of pain or other quantifiable symptoms) and one you want to test. Once you start seeing results from your experiments, it gets easier. Improvement is very motivating.
Toni: Can you give us an example of how paintracking enabled you to have the type of day you wanted?
Debbie: So many. My first finding was that drinking wine, even one glass, increased my morning pain for several days. I would never have guessed this. But there it was.
Toni: That’s a great example because that kind of simple discovery is something all of us can figure out, and so it makes me feel that, without a lot of effort, paintracking can make a big difference in our lives. Can you give us another example?
Debbie: It helped most with exercise. I read that exercise helps pain; but whenever I tried, I landed in bed for day, exhausted and with burning pain. When I started tracking, I began—no joke— with 30 seconds of gentle movement. I slowly increased, noting how I felt. Over months, I was able to work up to an hour-long exercise routine, without a pain flare-up.
Toni: I’ve been experimenting in a similar way. I bought a “step counter” at Amazon. Not one of these fancy ones that counts calories, etc. It just counts my steps. I reset it to zero each morning and then I can see how many steps I take during the day. They say ideally a person would take 10,000 steps. Hah! At the end of the first day, my counter read 1,200. But I made that my baseline and decided to try and take at least as many steps as I did the day before. I’ve had the counter for five weeks and, on one of my better days, I’m up to 2,000 steps. Sometimes I slowly walk in a circle in the backyard for a few minutes just to get my count up and, as an unexpected bonus, I’m enjoying the fresh air and the chirping birds.
Debbie: How wonderful. I look forward to hearing more about how tracking your steps continues to enhance your experience. It’s crucial to keep comparisons with yourself and not with some imagined ideal. Being able to do something deliberate and seeing the effects feels empowering.
Toni: It really does. Not only does it help keep me moving, I can witness my own progress. And you’re right that it’s important to only compare my steps to my own baseline. If I aimed for 10,000 steps a day, I’d feel like a failure and, if I pushed myself to reach that goal, I’d land in bed for weeks!
Debbie: Our own evidence is more compelling than anything we might read about treatments. Over time, I have built up a repertoire of things that help. For me, these include restorative rest breaks with heat and meditation, realistic affirmations to motivate me, and plenty of laughter and engaging distractions. The book describes proven strategies—but the goal is for each individual to experiment and then build what works into daily life.
Debbie: With chronic conditions, finding medications that relieve pain and improve sleep often involves trial and error—perfect for tracking. The book describes how to track medications in collaboration with healthcare professionals.
Toni: Any final words for our readers?
Debbie: If tracking feels overwhelming, simplify it. The book gives lots of suggestions. But you can also ignore all that and just see what feels right. The point is to find a way to discover what’s best for you. Then use this information to improve. Step by step, you can feel better. You really can.
Toni: Thanks Debbie. I’ve learned so much from this interview!
© 2013 Toni Bernhard
Deborah is a clinical associate professor in the School of Social Work at the University of North Carolina—Chapel Hill and a psychotherapist in private practice. She can be found online at www.paintracking.com
Toni is the author of How to Live Well with Chronic Pain and Illness (2015); How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow (2013); and How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers (2010).
All of her books are available in audio format from Amazon, audible.com, and iTunes.
Visit www.tonibernhard.com for more information and buying options.