People with M.E. can vary enormously in their experience of the illness, and also how long their symptoms last. Some make good progress, while others can remain ill for a number of years.
Some people find that they don’t go back completely to the way they felt before they became ill, but they do recover sufficiently to lead happy and fulfilling lives. This is similar to many other chronic illnesses.
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.
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 individual limits at that time, is important. However, this should only be done with the support and guidance of a specialist and be undertaken in a way that does not cause prolonged exacerbation of symptoms.