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Living with M.E.

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Improvement and recovery

Improvement and recovery

Although there is as yet no cure that works for everyone with M.E., people who have had the illness often tell us about their journeys back to recovery.

Others tell us that while they are not 100% back to where they were, they are much improved and managing to live with the illness.

It is important to get to know your limits and to set yourself small, realistic goals for getting better. This may mean that initially you have to reduce your overall activity levels so that you can achieve a routine that you can sustain. You will achieve more by working within your limits and increasing activities very gradually, than by pushing the boundaries all the time. There are many small changes you can make on a daily basis that will improve your health in the long term.

On good days, you will naturally want to do more – but do too much and 24 hours or more later, you may find yourself in a relapse from which recovery will seem painfully slow. This pattern is called ‘boom and bust.’ If it becomes the norm it can be very distressing and it can undermine your confidence. There are also strong indications that this pattern can prolong the illness.

The key to managing your illness is to ‘pace’ your physical and mental (including emotional) activity – to strike a balance between activity and rest and to make any changes in your routine small and gradual. (To find out more, read our Pacing booklet.)

In the early stages of the illness in particular, or during a relapse, adequate rest may be necessary and helpful. It is important to think about the quality of your rest, not just the quantity. Many people with M.E. find it difficult to relax and therefore do not get the full benefit from their rest periods.

However, while rest is very important, doing too little or being totally inactive can be harmful. Prolonged inactivity can cause muscle wasting and weakness, making it even harder for you to perform everyday tasks. Some gentle activity, according to your limits, is important.