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How I Gained Hope and Control: Pacing for the Bedbound Patient

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By Geraldine Blackman

Note: Geraldine Blackman is a CFS/ME patient from England and a graduate of the CFIDS and Fibromyalgia Self-Help course.

Beginning about five years ago, I found myself in bed full time because of CFS/ME. I was just lying there doing nothing and not improving. Then, through some fortunate events, I discovered a different approach, one that has shown me a way to reduce my symptoms and to gain a sense of control. Even though I am still quite limited, I now have a sense of purpose and hope for the first time in years.

A New Approach

Learning the new approach began when, after a long period of plain bed rest, I was referred by my GP to another doctor for a consultation. The new doctor sent me to an Occupational Therapist, who taught me a new way to live with my illness. The approach, which is a kind of pacing, combines a realistic level of activity with a special kind of rest.

The starting point was to determine my baselines. A baseline is an amount of activity that doesn't intensify symptoms and that can be sustained on both good days and bad. I determined my baselines by keeping a two week diary of each activity every hour and then recording the fatigue level afterwards. I was surprised how low my baselines turned out to be. I found that I could do about half of what I thought. This was quite a shock. Seeing how little I could do without increasing my symptoms prompted a whole lifestyle rethink. I had to reduce drastically almost everything and then very, very slowly increase my activity level, sometimes only by a minute at a time.

The Occupational Therapist also taught me two other things about activity: 1) to categorize my activities as high, medium and low energy and, 2) to divide my activities into a series of steps.

For me, high energy activities include showering and bathing, holding conversations, using the telephone, and watching television. Medium level activities include cooking and laundry. Low energy activities are things like resting quietly, using the laptop in bed, and listening to radio through head phones.

I learned that it was also important to divide each activity into small parts. For example, if I needed to make a phone call, something that is very difficult for me, I would write down exactly what I needed to say. Then I would try to anticipate the reply and determine what I would say in response. Then I would practice what I was going to say. If I had to cook a meal, I would divide it up into stages. In the morning, I would prepare the veggies and meat or whatever. In the afternoon, I would get out the plates and utensils. Then in the evening, I did the actual cooking.

A Special Type of Relaxation

An equally crucial part of the approach was to set aside several periods a day for a special kind of relaxation. This was not just lying in bed, but lying down with eyes closed and a blackout mask on and spending time listening to a self-hypnosis, visualization or autogenic relaxation tape or a tape with something like gentle rainfall. The self-hypnosis tape uses deep breathing, imagery and pleasant sounds to induce a state of deep relaxation. The visualization employs imagery and the use of all the senses to create a feeling of being in a safe, beautiful place. The autogenic training produces relaxation by having the listener imagine each part of the body as heavy and warm.

I learned that using the tapes would induce a deep relaxation that would lessen pain and lower blood pressure and anxiety. I used five or six of these rest periods a day, each half an hour long.

Also, I learned how to plan my day. The evening before, I wrote down what I wanted to achieve the next day. I started by writing in my five or six relaxations and then slotted in other activities around them. I found that it was important not to do two high energy activities back to back and also that I needed some guidelines to be realistic about what I could achieve. I learned that a good guideline was, "Whatever you think you can do, do half, then rest." I also discovered that I should stop at the end of my planned time, even if I was feeling good or else my symptoms would intensify. At this stage I was bedbound, apart from going to the toilet, so pacing can be done in bed and, as you get the hang of it, needn't be too boring. At the end of the day I wrote down what I had achieved and compared it to the list from the night before, so I could see some progress, however tiny.

I started out with low-level activities and then built up, with the exception of sitting in a chair, which was high energy for me. Initially, I found it difficult to sit up in bed, so very gradually each week a pillow was added and I would spend two minutes in that position. When it came to sitting in a chair, something that made me anxious, I borrowed a friend's garden recliner chair. Starting on the lowest setting, I gradually got to an upright position. At first, I could manage only a half minute. When I got to one minute, I started doing a row of knitting to distract me.

Inpatient Training

Beginning near the end of 2005, I spent six weeks as an inpatient in a unit for CFS/ME patients, the only facility of its kind in the UK. Its program, too, focused on pacing and graded activity. The first two weeks were devoted to observation and assessment. I filled in a daily sheet noting my activity level each half hour and the resulting fatigue. For the rest of the stay, I was given an activity schedule each week, with goals.

I think the best thing I learned there was more techniques for breaking down every activity into manageable steps. For example, I find showering, hair washing and dressing to be very tiring. In the hospital, I was taught to divided up this activity. I first prepare my clothes, then shower. After bathing, I immediately get straight into a toweling robe and turban, if I washed my hair. Then, I go straight to bed for a rest. At the end of the rest, I am dry and so don't need to towel dry. This is good, because drying off is a high-energy task for me.

Also, I found that if I told myself "think easy and simply," almost everything can be simplified and so much energy saved. For example, if I get dressed sitting down, I have less bending and I avoid trying to balance on one leg. If I put pants, tights and trousers at the same time, then I need to stand up only once.

Back Home

When I returned home from the hospital, I met with my family to explain the hospital program and what I would do now. I talked about pacing, which from now on was going to become a part of all our lives. I gave an overall view of pacing and explained how I would be taking five or six rests a day. I explained very clearly that the rests were the cornerstone of the program. I also gave them the booklets and other material I had received in the hospital.

They asked how long the program would go for and I said it was about lifestyle management and likely to be lifelong, but easing off as I improved. I again reiterated the need for the regular rests. We talked about new roles in the house, who would be doing what. We worked out together a daily sheet of responsibilities. My husband suggested he should tactfully keep visitors and phone calls at bay, as he knew this was the highest energy requirement of all. My daughter suggested that when I went to rest I set a clock so they would know if they came in, what time they could expect me to finish. She bought me a child's clock with moveable hands. I set the time when I start, so my family knows not to bother me for a half hour.

Control and Hope

Because of a series of family emergencies and special events that have occurred since I returned from the hospital, I haven't been as consistent in my pacing as I would like, but when pacing is going well, I see the benefits. When I take regular rests, my pain level is lower. Not having to use up energy to cope with high levels of pain, frees up energy for something else. With less pain, I can increase my baselines.

When I am consistent, pacing brings structure to my life. Before, I was just lying in bed doing nothing. With nothing to do, it's no wonder my anxiety and pain levels shot up and my fatigue increased. Now I have achievable goals to aim at. Journaling and keeping a daily diary and a diary for the next day pulls it all together and at the end of the day can review it all and be pleased at whatever I have achieved.

Now I feel much more in control of my life. I know what I am supposed to be doing. With consistent pacing, I can see a picture emerging, one where I have less pain and more energy. Life has a purpose again.