Reprinted with kind permission from Dr. Bruce Campbell’s CFIDS & FM Self-Help website. Originally appeared on ProHealth January 19, 2011.
Lifelong fibromyalgia patient Jana Murrell-Maxfield didn’t really begin to cope with her illness until her diagnosis at age 45. Now a moderator of the CFIDS & FM Self-Help site’s online courses (www.cfidsselfhelp.org), with a change of career to private practice massage therapist, Jana is one of many patients sharing their different roads to coping in the Self-Help Success Stories series.*
ADAPTING TO FIBROMYALGIA
When I received the diagnosis of fibromyalgia in February of 2001, I realized I had been unknowingly living with illness and denying it most of my life.
Even as a child, I felt like my nerves were all prickly and fuzzy like static buildup. I lived with pain, stiffness, fatigue and troubled sleep. Into adulthood, weather changes, certain foods, lights, sound, the touch of my clothes, even thinking hurt. Every day was an exhausting struggle.
But the worst would pass, and I would be told how healthy I looked and that I was just out of shape and needed to push myself harder, and that there was really nothing wrong with me and I was just too sensitive.
I accepted this view of myself and lived in denial of the truth of my experience.
The Positive Power of Diagnosis
I viewed the diagnosis of fibromyalgia at the age of 45 as a validation of my experience. What I had been feeling was real. And it wasn't just normal aches and pains that I should have been able to put up with.
Diagnosis didn't come with a cure, but it gave me something I could work with. I felt empowered. With the diagnosis it was clear that the pain was inevitable, but the suffering I was putting myself through denying it was optional.
After my diagnosis, instead of ignoring symptoms, pushing through, and berating myself for feeling so poorly for ‘no good reason' as if it were a personal failure, I realized I had to pay close attention to these symptoms, to really listen to what my body was trying to say to me.
Finding What Works and What Doesn't
In order to manage illness, I had to let go of my resistance to illness and plunge right into it.
• I learned that I do much better if I try to understand what my needs are and how I can best get them met.
• I had to learn to be on the lookout for signs of impending relapse. These were the very signs I had always tried to ignore before.
• Keeping an activity/symptom log and journaling helped me to focus on how I was feeling moment-to-moment and learn to recognize the warning signs.
This was a way of being in the world quite different from the task-oriented, pushing-through-the-pain method I had been praised for using before.
Initially, my focus was on finding my limits, or, as I prefer to call them now, boundaries. As I discovered circumstances that triggered relapse, such as overbooking my work schedule or visiting crowded noisy places, I began taking action to reduce or eliminate these precipitating factors. This meant I had to learn to say ‘no' sometimes, but in that ‘no' is a resounding ‘yes' to maintaining my health and well-being.
Over time, I changed my focus, from trying to find out what was ‘wrong' with me and what made me feel worse, to discovering what helps me to feel better and incorporating more of that into my life.
I put my problem solving abilities to new use, finding new ways to do things to better meet my needs and adapt to life with fibromyalgia.
I found that different types of activity, mental and physical, had different degrees of effect on my health.
For example, certain kinds of kitchen work, like standing and chopping lots of veggies, are harder on me than others. The longer I stand in place or the more repetitive my movements are, the more quickly I experience pain and fatigue. But I can space the activity out and not chop all that I need at one time. Or I can take some work out of my standing-room-only kitchen to do sitting comfortably on the sofa.
Certain kinds of office work, like following up on medical insurance claims, is worse than others. I guess with that one, it's the frustration level and brain drain that wipes me out. I used to push myself to leave my in-basket empty before quitting for the day. But it's better for my health if I work through one problem early in the day and leave the rest for another time.
The time of day I attempt things makes a difference. I noticed that I can walk about two blocks in the evening, but three has me collapsing. However, I can do three or more early in the day. I seem to have a window between 8:00 and 11:00 in the morning that is best for most activity, mental and physical.
I stopped the push and crash cycle and gave myself more space by pacing my activities and balancing them with rest. I use a timer for some activities that I tend to overdo, like working on the PC, to remind me to take a break.
Setting up a daily routine with lots of wiggle room has been helpful. I have the bones of routine, but with space for the unexpected emergencies of life as well as room for spontaneity and fun.
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Maintaining control of my workspace and schedule has been very beneficial. I have learned that making a good living is not the same thing as making a good life, and have redefined what having a successful career means. I am successful when I can feel good about the work I have done and still have the energy to give my friends a hug.
I have learned to let go of the need to please others and limit my work hours to what I know I can successfully accomplish without burning out. I now schedule my energy rather than my time and have a balance of work and rest that energizes rather than depletes me.
I do better with short periods of different activities, spacing similar activities apart with different kinds of activities in between, including pre-emptive rests, rather than large blocks of time devoted to a single activity. That's so different from how I used to work. I would get involved with a project and not come up for food or air until it was done and be surprised I'd missed meals and the sun had set.
I see now that this was a way of coping with the pain and confusion, blocking it out by focusing on completing a single task. But this method led to crashing.
I realize now that it's best for me to keep moving and not get stuck, literally, in one position or one activity for too long.
Awareness and acceptance of my limits and what aggravates symptoms has helped me to avoid certain situations that are stressful, such as being with large groups of people all talking at once or spending too much time in a store with bright fluorescent lighting.
I am much more vigilant about staying out of smoke-filled rooms and avoiding foods I am allergic to. (I was amazed to find how many foods aggravated symptoms.)
I now stop to rest at the first sign of illness rather than just loading up on drugs and pushing through until I collapse.
Stress avoidance is not always possible, so I have learned many methods of reducing the negative effects of stress. I use a variety of tools depending on the needs of the moment. Deep relaxation through therapeutic massage and healing bodywork usually works best for me.
I also respond well to long soaks in a hot tub or steam room, meditation and prayer, visualization, and gentle exercise such as long, deep yoga stretches, tai chi, slow meditative walks, and mindful movement.
However, sometimes something more vigorous for a shorter period of time, like a brisk walk or jumping on my mini-trampoline, works better.
Asking for assistance when I need it helps to both avoid and reduce the effects of stress. For example, when I feel a relapse coming on, I ask my husband for a massage. Massage addresses so many aspects of fibromyalgia for me. It relaxes tension, reduces pain and stiffness, releases negative emotions, and helps me sleep. It has proven to be such a great stress manager and healer that my husband now offers without waiting to be asked. And this has improved our relationship as well.
I monitor myself more moment-to-moment now and do what keeps my energy up and my pain level down.
• Comforts I had considered luxuries I now view as necessities. Having comfortable clothes, shoes, bed, chair, temperature, and lighting cuts down on unnecessary stress.
• I do more things, like dancing and playing the piano, just for the fun of it without trying to be perfect at it. Having fun reduces stress, energizes, and eases pain.
I avoid a great deal of stress by letting certain things be as they are. This has been a difficult lesson as I am a recovering perfectionist.
• For example, I have learned to be at peace and not get upset because someone else has messed up the kitchen. I no longer rush to clean it by myself even though I can barely stand up.
• And I recognize now that, in the long run, it doesn't really matter if my floors aren't spotless or the laundry doesn't get done on Saturday.
Free to Be Me
Deepening my understanding and acceptance of how this illness affects me has generated an inner strength that has helped me change the way I live my life so that I now do what is right for me.
I am more at peace within myself now than ever before. I have learned that it's not about what happens to me; it's about how I deal with what happens to me that makes all the difference.
Related Articles; Other Takes on Adapting
• “Making a “NOT TO DO List”
Like not being manipulated into commitments that will be a strain.
• “From Doing to Being: My Journey to Healing”
She felt she had to "lead a normal life," but working made her condition worse.
• “Getting Through the Bad Days”
Nowadays, if I have a really bad day, I….
* This article is reproduced with kind permission from Dr. Bruce Campbell’s CFIDS & FM Self-Help website (www.cfidsselfhelp.org), which offers a large searchable library of free articles on coping with ME/CFS and fibromyalgia, as well as low-cost online self help courses in moderated discussion group format. Dr. Campbell is a leading ME/CFS & FM educator, and is himself an ME/CFS patient who slowly achieved improved health more than a decade ago by researching and practicing an ongoing regimen of significant lifestyle changes.
Note: This information has not been evaluated by the FDA. It is general and is not intended to substitute for medical or other professional advice. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.