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By Rosemary Rowlands
Posted with permission from the CFIDS and Fibromyalgia Self-Help Website
I’ve had CFS for more than 20 years. My health declined gradually and was very poor by a few years ago. Since then, however, using pacing ideas from the self-help program and other sources, I’ve made steady progress and my life has improved greatly.
I now go out once or twice a day, rather than once or twice a week. I spend time socializing and doing enjoyable activities instead of using all my energy just taking care of my basic needs. My health is more stable and instead of often feeling helpless and hopeless, I feel much more in control.
First Attempt at Pacing: A New Form of Push & Crash
When I was forced to give up work, I thought I was pacing because I took a long rest every afternoon and had extra rest before major activities. In truth, my overall pattern wasn’t much different from the push-crash cycle I had while working. I did as much as I could on good days and mainly rested on bad ones.
The results were discouraging. Instead of my health improving, the bad days seemed to get worse and more frequent. I never knew how I would feel or what I would be able to do from one hour to the next, and it was very stressful trying to make any plan or commitment
Second Phase: Stability Through Alternating Activity and Rest
Starting in early 2005, I took a new approach based on an article I read in the Action for ME journal. The author suggested alternating periods of activity and rest each day, and having a consistent activity level from day to day. After reading the article, I started to take planned rests throughout the day, lying down with my eyes closed. Also, I stopped some activities that were very tiring or that couldn’t fit into my new schedule. And I kept records every day to help me keep to the regime. These changes gave me more stability and I had far fewer bad days.
Unfortunately, I felt more tired and unwell than before. I was going to bed earlier and earlier at night because I felt so tired, and the quality of my sleep was very bad. Also, I was getting more back problems than I had previously and I had more depressive symptoms. Looking back, I think that increasing rest resulted in increased deconditioning, affected my quality of sleep and disrupted my circadian rhythms (“biological clock”).
At about this time, I took the self-help course, which provided me with some new ideas and reinforced familiar concepts. The class taught me the importance of having good sleep, the effects of sleep on pain and fatigue, the usefulness of record keeping, routine and schedules. It also gave me a tool for achieving goals by taking a series of small, realistic steps, which the class calls “targets.”
Over the following year I focussed on trying to have the same amount of activity and rest overall each day. I also worked towards sleeping less in the daytime, and experimented with different lengths of rest periods. These things helped me to have the confidence to move on to phase 3.
Third Phase: Consistency Leads to Improvement
In phase 2 I had stopped the push-crash cycle of doing a lot on good days and very little on bad ones. Now I wanted to develop a more consistent daily routine and reduce my tendency to push in the mornings and crash in the afternoons, moving towards a more normal rhythm to the day and gradually reducing rest. This new approach has paid off.
The strategies that have been most useful to me are: keeping records, making detailed daily and weekly schedules, resting frequently throughout the day, reducing daytime sleeping and spending less time in bed, being consistent in living by my schedule, and making changes gradually.
Record Keeping and Planning
To determine how much activity I should have, I kept records. I noted when I went to bed at night and when I got up in the morning. Throughout the day, I wrote down how long I spent on each period of activity, rest, sleep, etc. To find a realistic schedule that I could repeat consistently, I divided the totals for two weeks by 14, which gave me an average of how much sleep, rest and light rest (reading/TV watching) I needed each day.
Then I made myself a timetable of activity and rest for the overall week, planning it in more detail, hour by hour, each evening for the following day, and I still do this. Initially, I used timers a lot, for activity as well as rest, to help me keep to my schedule. Nowadays, I mainly only use a timer to prevent me from sleeping too long when I rest during the day.
Rest and Sleep
Alternating periods of activity with time for rest is an important part of pacing. While at first I had rested for long periods when I felt especially tired, I found it more helpful to spread my rest periods evenly throughout the day, having several shorter periods rather than long times lying down. During my rests, I do nothing, close my eyes and relax or occasionally nap. I also found that light reading or TV watching is a kind of rest for me and I use a combination of these activities with eyes-closed rest. As soon as I could manage my routine consistently, I reduced my total rest time.
I’ve also worked on normalising my sleep in ways I learned from the book Overcoming Chronic Fatigue by Mary Burgess. I decided to use my bed only for night-time sleep. (During the day, I rest in a reclining chair.) I limited my time in bed to the hours my records show I needed to sleep. I tried to go to bed later in the evening, but always got up at the same time, regardless of how little sleep I had. Over time, I have gradually scheduled less time in bed at night.
In sum, I changed my daytime rest to consist of several scheduled short periods rather than resting in response to symptoms or for long periods of time. And I reduced daytime napping and instead focused on getting good quality sleep at night. I think that the combination of living by my routines and normalizing my sleep has helped reset my biological clock.
Consistency and Gradual Changes
I’ve found that consistency is also important. My aim is to have a routine which is, as much as possible, the same each day – meals at the same time, getting up and going to bed at the same time, etc.- with a variety of different activities, mental, physical, social, boring, enjoyable – throughout the day, interspersed with rest and relaxation. I settled on living by a schedule after observing that my symptoms were made worse by chaotic routines and by resting for long periods of time. I found that what brought stability to my life was to be as consistent as possible, with similar amounts of activity each day and with resting little and often.
I still record my activities each day so that I can monitor my progress, and discover what works best for me. Once I find that I can manage a routine regularly I introduce small changes, perhaps decreasing my rest periods, spending less time in bed at night, or starting a new activity. To do this, I plan targets for the week ahead on Sunday, and then review any problems that might have prevented me from achieving them the following Sunday. In this way I’ve managed to gradually increase how much I do each day and broaden the scope of my activities. Keeping records encourages me and reminds me how far I’ve come.
The Payoffs
Pacing has given me a way to make consistent, achievable changes in my life. I feel in control rather than always being driven by my symptoms. Using pacing over the last two years, I have increased my activity level by about 50% and I need less rest. Some of my symptoms have improved: I have more stamina, less anxiety and depression, better sleep, and no back problems. Also, my tinnitus disappeared and I have less sensitivity to light and noise.
My sleep has improved and I now live my life on a schedule much closer to that of the rest of the world, which has made it much easier to schedule appointments and to socialise without moving outside my usual routines. Pacing makes my life and health much more stable. Stability has reduced my stress level substantially.
It took a lot of time and work to get to this point, but I’ve managed to stop and even reverse the trend of over twenty years of illness. My progress has given me a real sense of achievement and hope for the future.