By Bianca Veness

Note: Bianca Veness, a CFS patient from Australia, is a moderator in the CFIDS & Fibromyalgia Self-Help program. This article is adapted from a message sent to a class she taught. 

I spent many years fighting my illness and the limits it imposed on me, and experienced frequent crashes as a result. Eventually I recognized the futility of my approach and adopted a new attitude to my CFS. Rather than fighting my illness, I accepted it and, over time, have created a new way of life in tune with my body. By learning from the illness, I’ve moved from a roller coaster life to a life with more peace and stability, and a lower level of symptoms.

Fighting My Limits

I was diagnosed with CFS in 1998 when I became bedbound with the illness. After spending a year at home recuperating, I went on to finish high school then moved away from home to go to college. During this time I often didn't tell people I was sick, and when I did they had trouble believing it, because I worked harder than anyone else. I held myself to impossibly high standards, wanting to prove the illness couldn’t stop me from leading a normal life.

I fought my limits all the time. I would crash, be forced to spend weeks or months recovering, then do it all over again. I experienced peaks and troughs in my health, but the general trend of my health was downward. Eventually I didn’t feel I could manage any more and I dropped out of school.

Leaving school helped me to realize that I was living the wrong kind of life. I was trying to force myself beyond my limits, always pushing the envelope, battling against my illness. It was painful. I had high symptoms, frequent severe crashes and was constantly in a state of stress, anxiety and emotional turmoil. I blamed the illness for doing this to me.

Illness as Teacher

Gradually I came to realize that the illness was not responsible for my stressful life; I was. I was not acknowledging that my body had changed and had different needs now. Rather than seeing the illness as an enemy, I began to see it as a teacher, one that was trying to teach me a valuable lesson – to slow down! Instead of trying to fight the illness, I accepted to it. I gave up the idea of returning to my pre-illness life, and began to develop a new way of living.

This might sound like I was giving up hope, but actually it was an incredibly hope-creating experience. I finally acknowledged that I was unwell, that I would have to live a different kind of life, maybe for the rest of my life. And that was okay. Rather than seeing the illness as a prison, and the need to stay within my energy envelope as a trap, I began to see my situation in terms of freedom.

I was freeing myself from a life of unpredictability, from feeling constantly overwhelmed and exhausted. By changing the way I saw my illness and my life, I freed myself from having to live up to the impossible expectations I had for myself. It was a wonderful feeling. Now, I could just be.

I began to really listen to my body and to look after myself, using many of the skills we learn in the self-help class like pacing, resting, relaxation and planning. I began to meditate, developed new, less tiring interests, and worked on becoming a more centered person.

And what I became was happy! Not all the time, obviously, but I'm a much happier person now. A lot of my secondary symptoms have evaporated, and I can manage the other ones reasonably well. Because I work with my body rather than against it, I'm not crashing all the time, which means I can do a lot more than others in my state of health.

Someone in one of my classes made a really good point when she said, "I've got to strike a balance somehow, and live a lifestyle that I can manage even when I'm feeling the worst." Finding that point of balance was really important for me. I don't live a perfect life now; I still overdo it sometimes. But I am not always overdoing it, always pushing my limits and then reaching crisis point. I'm in a place where if I overdo it once, I can recover. I haven't had a major crash in over two years, only a few minor flares, even though I've had my share of troubles during that time (including three moves and nursing a sick family member back to health after a car accident).

CFS has been a wise teacher, giving me the same lesson again and again until I learned it. It has taught me to acknowledge my body’s needs, and to spend my energy wisely, doing things I enjoy. It has taught me to be organized and to put thought into what I do. It has taught me to value the important things in life, and to let go of the little things. It has taught me to accept myself as I am.

Some of these lessons have been very painful, and some I am still learning, but the process has been worthwhile. It has enabled me to grow as a person in ways I wouldn’t have otherwise. I’ve learned patience, discipline and serenity, and all the time spent on my own has given me a chance to become a more spiritual person. CFS paradoxically has been a healing experience for me, as my journey through the illness has led me toward wholeness as a person.

From Hare to Tortoise

My experience with CFS reminds me of the story of the hare and the tortoise. Like me in my early years with the illness, the hare goes full tilt towards the finish line, collapses exhausted half-way through and never gets to finish the race! The tortoise, on the other hand, knows how much he can handle. He goes slow and steady and never exceeds his limits, but gets there in the end. 

Over time, I’ve realized that for me 'giving all I have' is not about giving all I have towards doing some task that I feel I 'must' do. It's about giving myself up to the path on which I've been placed (by a higher power, by life or just by circumstance) and accepting it. Allowing myself to be ill, and moving forward, like a tortoise, working with the illness to create a better kind of life.

I deeply respect everyone with CFS/FM. It is a hard illness to manage. I am filled with awe and admiration for my fellow patients, who struggle along against sometimes incredible odds. I see a lot of courage, fortitude and patience. The value of a tortoise is not about success, money, being the best. The value of a tortoise is in accepting who you are and where you’re at; in taking life slowly, and enjoying it along the way. Living the best life you can with what you’ve been given, which is more courageous and more heroic than anything else I can think of.

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