Factors that can be responsible for setbacks
• Disrupted sleep pattern
• Returning to old patterns of behaviour and activity cycling
• Temperature extremes in the environment
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.