Pacing - What it is and why it matters
What does pacing have to do with recovering from the effects of Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM)? It turns out quite bit! Pacing is perhaps the single best thing you can do to help yourself and can literally change your life!
Pacing is the ability to adjust your activity level to your energy level. This is called living within your energy envelope. Everyone, well or not, has only a certain amount of energy. Some days we have more than others depending on a number of factors such as our diet, the amount of sleep we have had, the type of activities we are doing, our stress levels, etc.
Fatigue is the prominent symptom of those with CFS and also a major issue for those with FM. Fatigue is a misleading term because it is far more debilitating and is more properly termed post exertional malaise which is the severe fatigue that results from doing too much of any type of activity, whether that be mental, physical, emotional.
Pacing brings stability to your life and helps avoid the push and crash cycle. CFS/FM patients tend to push themselves on a good day and then suffer the consequences (crash) and are forced to retreat to bed. Your life feels out of control when you live your life in response to your symptoms. Pacing allows one to live within his/her energy envelope and adapt your life accordingly.
There are several basic steps to pacing.
1) Assess your functional capacity. This will help set a baseline and to determine where to start. This can be done in many ways such as keeping a journal or by using the functional capacity scale below.
Functional Capacity Scale
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Dr. Alison Bested ©
Dr. Lynn Marshall
2) Keep a daily journal of your activities (time spent on each) and your symptoms. Remember to record all types of activities, even social events or emotional upset. Check for patterns - are there links between your activity level and your symptoms. Your symptoms may not appear right away as it may take several hours or the next day before your feel their effects and by then you have added other activities to the mix. Divide your tasks for the day into manageable portions and intersperse them with rest periods.
3) Be sure to prioritize your activities Decide which one you can manage comfortably - it will be a process of trial and error and will take months or even years to refine. To help avoid the frustration and depression that can come from not being able to do things as you once did, it helps to set small goals for yourselves each day which gives you something to look forward to. Try to have three types of goals planned; one set involving something more physical for a good day, one set for a so-so day, and another extremely light set (such as reading) for a bad day.
4) Build up slowly. When you first begin to pace, limit the time for each activity and do not extend it until you know your body can handle it. Normally the rule of thumb is to cut the time in half from what you think you can do as we all overestimate our abilities. Allow at least two weeks before adding to your activity level.
Principles of Pacing
1) Have realistic expectations Improvements are very slow and you are likely to see only slight improvements over a number of months.
2) Expect Setbacks This happens often especially when unexpected events occur.
3) Resting is critical Listen to your body - plan a daily rest even if you feel you do not need it. Rest means quiet time with your eyes closed and away from noise and distractions - rest does not include watching TV on playing on the computer.
4) Vary your activity both in terms on level of intensity and type of activity. For example, do the laundry, have a rest, then make a phone call.
5) Be aware of all the component parts of an activity, each of which takes energy. For example, going shopping or running errands involves, getting showered, dressed, driving, shopping and then driving home.
Lessons I Have Learned
- build in rest periods My motto is stop, drop and rest at the first sign of reaching your limit and hopefully before that point. Always ask yourself if the activity is worth a crash - sometimes it is but often it just sets you back and you end up feeling frustrated - remember a little each day is better than a lot one day and nothing for several days. Think of the tortoise and the hare.
- keep a journal of the time spent doing something, and as you learn your limits, it becomes automatic and you instinctively keep a mental note of what you are doing and how long you have been doing it.
- social or fun events, especially if noise or lots of people, is very taxing, I have had to cut back on entertaining and when I do, I have changed the way I do such as making simpler menus, fewer people and asking guests to bring something.
- cognitive activities are as hard as physical, even more so.
- know your warning signs of a crash - for me that is sore ears.
- I travel differently - no more bus tours or short intense vacations. I build in down days after long flights or drives and establish a home base which allows me to rest.
- I can only do light housework and gardening and hire someone to help with the heavy elements of each.
- make family and friends aware of your illness and limits and do not be shy to say you must leave. My husband knows when I must go just by looking at my face as I become very drained looking. My common expression now is "I am fading".
Summary
Ignoring your limitations or thinking you can push through them does not work. By learning to accept that you are ill, that major changes are required in your lifestyle and that you must listen to your body, will help move you to a higher level of wellness.
Pacing gives you back some control over the illness You will find that pacing and acceptance go hand in hand. Acceptance does not mean resignation but rather an acknowledgment of the need to live a different kind of life. Remember the expression: "as you sow so shall you reap" - it can also be said that as you accept so shall you pace. And vice versa.
Pacing is not a quick fix or a panacea. It is not a single action or strategy but rather a way of living with CFS/FM. When practiced consistently over a long period of time you will gain greater control, lessen your symptoms, expand your energy envelope, and possibly even recover.