Managing setbacks

Factors that can be responsible for setbacks

• Over-activity
• Stress
• Disrupted sleep pattern
• Infections/bugs
• Returning to old patterns of behaviour and activity cycling
• Temperature extremes in the environment
• Operations

Occasional set-backs can be expected.

How to avoid setbacks

 • Try to avoid the above where possible.

 • Recognise your own warning signs and act upon these as soon as possible.

 • Pace and manage the condition as best as you can. (However, setbacks can still occur when people are pacing themselves).

How to deal with a set-back

 • Try to identify the cause, if possible, so this can be avoided in future.

 • It may be necessary to reduce, or even stop, some activities and increase the frequency of rest periods to stabilise symptoms and re-establish a baseline activity level. Try to stabilise your routine by ensuring you have a good balance between activity and rest – you can check this out by keeping a diary.

 • Remember there is no reason why you will not pick back up to where you were before and remember the past improvement you have made.

 • Don’t panic or blame yourself. Look at the situation as a problem to be solved rather than a stick with which to beat yourself. Remember you do not have to start from scratch as you have already mastered many strategies to help yourself.

 • Think about your current baselines of activity and try to re-establish a baseline, i.e. do not continue to build on goals if you are struggling.

 • If you have an infection, take appropriate time off to recover. This includes taking time off work or school. Increase your level of rest for a few days until your temperature becomes normal.

 • Ask for both practical and emotional support/ help.

 • Challenge negative thoughts with more realistic ones: “I have fought back from here before” “I can get through a difficult patch in the best way possible,” “I know I can get through this if I use what I already know”.

 • Review the experience to determine, if possible, whether triggers can be avoided in the future, and put strategies in place to avoid these.

 • Do not let having ME/CFS become your sole identity. Value yourself for who you are rather than what you can or cannot do.