Chapter 4: Conserve Energy

During Movement & Daily Life

A crash is an indication that the body is in danger. Movement and energy expenditure needs to be aggressively minimized to shorten the length and intensity of the crash.

The following acronym can be used to help guide one’s choices around movement and energy expenditure: PEO which stands for PERSON, ENVIRONMENT, and OCCUPATION.

P = Person

What choices can you make (regarding your “PERSON”) or have someone help you do by way of positioning, speed and frequency of movement, sequencing of activities, and duration of movement to make movement and energy conservation more successful?

Considerations

• What is your position? Are you lying flat, minimizing the impact of gravity; or are you upright, partially upright, or moving limbs above “flat” off of the bed or sofa?
• Maximize rest by lying HORIZONTALLY or flat, such as on a bed or couch. More energy is required by the body to maintain positions that are not flat or horizontal.
• Performing activities in a lying, side-lying or semi-reclined position conserves more energy over doing the same in sitting or standing positions.
• Keeping the limbs close to the body minimizes energy demands.
• Keep elbows tucked and supported including using pillows, thighs, tables, etc. • Take small steps to avoid greater energy demands on the legs and trunk.
• Move slowly and monitor for shortness of breath, changes in breath pattern as a sign of moving too fast for your energy system.
• Chunk activities. Do one or two pieces of the task, rest, and then go back to the task.
  • When eating, bring the fork/spoon to your mouth for 3 separate bites of food. And then stop and rest for 3-4 minutes. Repeat this pattern until finished.
  • When dressing, put on one clothing item at a time then rest (lay horizontal for 1-2 minutes before putting on the next clothing item).
• Avoid completion compulsion as it is contraindicated for people living with ME/CFS. Adopt kindness for yourself, set limitations and protect your boundaries.
• When orthostatic intolerance is a factor, decrease the effects of gravity by avoiding standing or upright body positions and use adaptive device(s) such as a reacher device or a sock donner.

E = Environment

What can be done to your environment to make movement and energy conservation more successful? Think about your environments such as work, home, and outside surroundings. Considerations

• Stage chairs or stools throughout the living environment to enable rest periods between the bedroom, bathroom, kitchen, etc.
• Keep necessary items in your Crash Care Kit near your bed.
• Have staging areas in your home where you place things to be taken to another part of the house to avoid unnecessary trips.
• Are there changes to your home environment that may assist you? Make your home more accessible for you and add mobility aids if helpful.
  • Consider utilizing one level of your home rather than navigating stairs and multiple floors.
  • Decrease clutter in the home (when not in a crash).
  • Is there a mobility aid or device that can help you move around in a particular environment, or during times where extra support and energy conservation is vital such as during a crash? These may include, a power wheelchair or scooter, wheeled walker with a seat, or a folding cane.
  • What changes to your environment would help you to use a mobility device?

O = Occupation

Occupations are the things that you do to take care of yourself (dressing, showering, brushing teeth, managing your medications), your environment (taking care of pets, housekeeping, meal preparation), and interacting in the world around you (work, play, leisure, social interactions).

It’s important to set limits and protect your boundaries. Go with the flow and know that when you are in a crash it is prescriptive to do the bare minimum required to complete tasks. Recover and allocate energy only for what is essential or most important to you. Considerations

• Is the activity truly necessary, or can it wait until the crashed period has resolved?
• How important is it for you to do this particular activity yourself?
• Can the activity or task be delegated or postponed?
• Can the task be adapted in technique? Can it be simplified or modified to use less energy to complete? (frozen pre-cut vegetables vs. preparation to chop/peel vegetables).
• Can the activity be broken down into smaller segments (chunks) that you can space out and allow rest between the steps? For example, with a task that requires a more upright posture, consider breaking this into segments that accommodate 5 minutes of activity followed by a 10-15 minute rest break before engaging in the next part of the task.
• Can the goal or task be achieved without the same level of detail to ensure the need is met without unnecessary energy expenditure? In other words, can you simplify the activity?

In the end, energy conservation is vital to both crash recovery and lifestyle management when living with ME/CFS. Listen to your body, hone in on your physiological cues (increased heart rate, respiration, brain fog, etc.) and heed the warning signs. Lifestyle adjustments and modifications are key to managing your illness and decreasing incidences of crashing.