Living with ME (cfs) involves learning how to manage limited energy resources so that correct balance between physical activity, mental activity, and rest, can be maintained each day. How much energy you will have each day will fluctuate and vary during the day, as well as from day to day.
In general, healthy people tend to be active (both physically and mentally) during most of their waking hours. They may feel tired by the end of the day, have a good night’s rest, and wake up feeling refreshed to start the next day.
However, it is different for sufferers of ME (cfs), as overdoing any activity (either physically or mentally) may trigger symptoms and even a relapse later on. How to successfully manage your energy levels to last the whole day will require a degree of commitment, patience and practice.
Severely ill and bedbound sufferers of ME (cfs) have special energy management issues, refer to Resources Guide.
- Energy management is sometimes described as pacing, and activity management.
- When you have put this technique into daily practice, you may have a name for it too.
- Choose activities that give you enjoyment and variety, for physical and emotional wellbeing, such as laughter, humour, talking to friends, solitude, looking at a picturesque scene.
- Alternate the activities between physical, mental, and rest. Rest may include sitting, half reclining in a chair, resting in bed, or sleeping.
- It is important to remove all stimuli when resting physically and mentally.
- Physical rest is ceasing all activities, allowing the body to rest.
- Mental rest is slowing down the mental processes to calm and still the mind. Practising meditation, looking out the window at the wildlife, trees, and plants in the garden, are suggestions worth trying. Refer Resources Guide.
- Perform one task at a time to avoid over taxing yourself.
- Perform any activity appropriate to your energy level for short durations, up to a maximum of thirty minutes, then have a rest before starting a different activity.
- Start every activity slowly and gradually increase the activity level and duration as you feel well enough to cope.
- Plan rest periods for regular times throughout the day as a technique to reduce symptoms.
- Whenever you exceed your limitations on a good day and suffer a setback as a consequence, just remember to rest, rest and rest.
- How long to rest before commencing activities again depends on the individual situation.
- You may need to rest for a few hours, a few days, or a few weeks.
- After a suitable time of rest, resume the activities again and assess how you are coping.
- It is about trial and error and adjusting to living within the limits imposed by the illness at a particular time.
- It is about two steps forward and three steps back = no progress.
- It is also about three steps forward and two steps back = progress.
- The best time to do things during the day is when your energy level is at its peak.
- Tune in to your body energy level and determine when during the day is the best time for you to get involved in activities. Use this time for activities such as keeping essential outside appointments, shopping and meal preparation, which all require extra energy.
- Scale down activities to match lower energy levels during the day.
- Learning to adapt, and accept fluctuations in daily functional ability, is very much a part of living with ME/CFS.
- The most important thing to remember is to tailor the activity to suit your level of wellness at the time.
- Learn to say “no”; for example, tell the telephone caller you are too tired to talk at that time, but you will ring them back at another time. Or have your calls divert to an answering service, and reply at another time when you feel up to it.
- Try to select enjoyable activities to do on a regular basis as a reward to yourself.
- Always remember to rest between activities.
- Find ways of doing things differently and with less effort.
- Try to recognise what is likely to cause you stress, and find ways to reduce or avoid the stress.
- When you are able to keep a diary, list the activities performed each day and the length of time spent as physical rest and mental rest between each activity. This will enable you to monitor your activity levels and make changes as necessary to adapt to your level of wellness on a daily basis.
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