Physical and Psychological Recovery from ME/CFS

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By Margaret Fergusson

Note: Margaret Fergusson is a ME/CFS patient from Scotland and formerly a member of our community. She is retired from a 35-year career as a biochemist with the National Health Service.

When CFS forced me to stop working, I was functioning at 15% of normal. Now, three years later, I am back to about 70% and I have found a peace in the new, somewhat limited me.

Descent into Illness, Starting the Journey Back

My descent into CFS began with a viral throat infection. The infection stayed on as a devastating fatigue, intolerance of exercise, aches and pains and an inability to think. I fought the fatigue and ignored the pain, but I had no answer for the thick gray fog that crept into my brain every day.

I accommodated by doing work needing deep thought early in the week and early in the day, when I was at my best. But each week the fogged days came earlier and the fog came earlier in the day. Finally, I realized that I could no longer do my job and that it was unsafe to drive, so I stopped working, ending a 35 year career with the National Health Service in Scotland.

A diagnosis came gradually. Two doctors suspected Chronic Fatigue Syndrome, but it was only nine months later that a Consultant Physician confirmed their suspicions. During that time, I educated myself about CFS (or ME as it is called in the United Kingdom) and I made one important change to my daily routine: taking an afternoon nap.

That one change improved my overall functional level from 15% to 25%. I wanted more, of course, and decided to pursue an idea suggested by the Consultant Physician that I surf the net to find a CBT/self-help course. I found and joined the CFIDS/Fibromyalgia Self-Help program.

Learning Self-Help

Through taking the introductory course and participating in the target courses later, I made two major changes in my life that helped me improve my functional level up to 70%. First, I found a way to adjust my activity level to fit the energy level I had at any time.

Second, I learned to be content with my life, even if it was very different than what I had known and what I had hoped for myself. Living by a weekly plan was crucial to the first. Psychological adjustments, aided by my meditation practice, were central to the second.

My Weekly Plan

The introductory course helped me realize how limited energy is for someone with CFS. I saw that I was the boom and bust type, but that if I could regulate my energy expenditure (live within my energy envelope), I would have a better life. I decided to devise a formal written plan for each week's activities.

Since I was not able to judge my limits in "real time," I wrote out a schedule for myself each week based on my activity level in the recent past. Mornings were set aside for strenuous activities; afternoons for rest and undemanding activities; evenings for pleasurable activities.

To fill the slots, I reflect on how things went last week. I can now tell intuitively if the week as a whole has too much in it. I am well enough now to get away with an occasional busy week and to be able to judge if I need to plan a quiet week.

A mixture of intuition, body awareness and plain common sense helps me decide if I can increase my activity level or whether an increase in symptoms suggests that I should ease off a bit.

I use logging sporadically to define and redefine my limits as my health improves. The plan is a pre-emptive log, in the sense that writing my limits down in detail on paper helps me to stay within them.

Here's a sample plan for a week when I was at a functional level of 50%. "DIY" on Tuesday refers to Do It Yourself, meaning jobs like painting, decorating, fixing fences, and so on. I used to lie in bed working out how I could divide these jobs into tiny pieces to do one little bit at a time. As I improved the little bits got bigger.

 

Using this written plan has a number of advantages. First, it provides discipline, controlling changes in what I am able to do and preventing me from going back to the boom and bust scenario. Second, it makes it easier for me to ask my family for help with "energy expensive" jobs. Third, it gives me a sense of achievement when I stay within my limits.

Acceptance

The plan ensures that my physical and intellectual activities are kept within limits; it may even make me seem to be a sort of robot. I consult my little piece of paper and act accordingly.

It has been helpful in that way, but I still had to address feelings of loss and anger triggered by CFS. After all, CFS had changed me in the space of a few weeks from being a "supermom" into a semi-invalid.

Instituting my plan gave me enough energy to address the emotional issues. I had to accept that my life had changed drastically. I had lost a huge part of my role in my family and I had stopped working.

Life has changed more in the three years since I developed CFS than ever before. I made it my goal to become comfortable with myself just as I am now, in this present moment.

I think two attributes from my life prior to CFS helped me to make this adjustment.

Persistence: The tendency to keep plugging along is deeply engrained in my nature and helped me adjust to CFS. My persistence has paid off. I have a lifestyle that lets me live in harmony with CFS.

Previous Health Problem: I inherited an eye problem, which allows me to use only one eye. I learned that I had to work out my own way of doing things to compensate for the problem. Eventually, compensating was instinctive.

Meditation

Meditation has been crucial to my adjustment. I started meditating five years before I developed CFS, but I had to adapt my practice to meditating with CFS. I learned to wait for lucid spells before trying to practice the formal meditations I had been taught. I now use three types of meditation.

Meditation on the breath: I pay attention to my breath going in and out of my body, for periods of 20 up to 45 minutes. I have found this practice to be a great stress buster. Even when I feel as if I have been distracted, a deep calmness carries over into the rest of the day.

Meditation on loving-kindness: This meditation fosters feelings of kindness towards myself, towards others (including those with whom you have conflicts) and eventually all creatures.

Developing feelings of kindness towards myself and others is a great practice for when I am being forgetful or clumsy; it stops the negative self-view that I am just a stupid old woman.

This practice was also good for dealing with relationship problems. At one time, I had a "waiting list" of people I didn't get on with very well!

Just Sitting: I meditate on the breath to quiet the chatter in my mind, then I sit and just notice what thoughts arise and what I am feeling. Making a quiet space helps subtle thoughts and emotions rise into consciousness. By getting these things out in the open I got to the source of the compulsive boom and bust behaviour.

Lessons from Meditation

I learned that just creating a quiet space to be with the fog and the pains was useful in helping me come to terms with symptoms.

Meditation helped me let go of my "work" self. My long working life had come to an abrupt and unplanned end because of CFS. I used a sort of visualisation to wind all that up and say goodbye to it.

I focused my meditation on letting go of a lot of the attributes I thought of as me: the mom, the scientist, the person who could always cope. I used meditation to value the person I was now.

While meditating I noticed that I was grateful for having developed CFS because I was able to value a lot of good things (like stillness) that I had ignored.

Meditation helps me be in touch with myself but not in a self obsessed way. (In effect, I am saying "This is how I am." I am not being judgmental about it) The input from meditation helps me decide how active I can be in any given week.

Meditation has helped me to accept CFS at a deep intuitive level so I can be comfortable with being a very different person from the one I was a few years ago.

Conclusion

Coping with the changes wrought by CFS have made me focus on me, not on the roles of wife, mother, and scientist that I have played. Learning to accept myself as just fine the way I am, learning that my old driven way of life was unhealthy, has brought me a great sense of contentment.

CFS is part of me I am prepared to welcome it on board and appreciate it for the valuable lessons it has taught me and is still teaching me.

Update: The author wrote us in 2012 to say that she has been ordained into the Tiratana Buddhist Order and now uses the name Danabhadri. Updating her health status, she wrote:  

"With time, my envelope got bigger and bigger. I can do a lot provided I listen to my own body and let myself be guided by intuition born of experience. I can cook for 30 people for a week, I can do financial work one day a week and, best of all, I can help teach classes."

"I feel very blessed not just because I have made such a good recovery, but because I have had the experience of having had so much of what I looked on as me taken away." 

"That experience plus the coping mechanisms I learned from this programme are helping me go forward with confidence and with gratitude to all who have helped me to reach this point."