Relapses

Relapses are a typical feature of the illness. Sometimes they can be quite predictable. For example, after doing too much one day, you may find that your condition deteriorates a day or two later – a relapse. It is also possible for relapses to occur more randomly despite careful pacing and good management.

Everyone has different factors in their life that can make them more prone to having a bad patch or a relapse. It is often a combination of several factors. For some people it can be contracting another illness on top of their M.E. – a virus or stomach bug. Other triggers can be things like the weather – too hot or too cold, busy or stressful times of the year such as Christmas or family gatherings or for women it can be their menstrual cycle.

Many people who have recovered from M.E. will explain that they are still prone to setbacks or relapses and they are experts at managing their health, avoiding known triggers and ensuring any 'dip' is only temporary.

It is important to try and discover which unique factors increase your chance of a relapse, and then try and plan around these times.

View a selection of related articles from past issues of InterAction, our quarterly magazine.

Real experiences

Julia
'Learning to say 'no' is one of the hardest lessons. It's difficult enough feeling that you're letting people down, but doubly so when it's your own family and children. Trying to be a good parent despite M.E. often means overstepping the mark, finding I'm regularly saying 'ok' but thinking 'oh no'! The consequence is a few weeks of very poor functioning, physically and especially mentally, with a retreat back to the basics: surviving, eating, resting, finding purpose in the tiniest of things - and much listening to Radio 4! It may mean reverting to my survival tactic of taking life half an hour at a time and not looking beyond that.'

Ciara
'The overwhelming emotion of my first big relapse was disbelief. I was 12 years into my M.E. - the first four years were living hell but I had turned a slow corner and had been stable for eight years. A summer cold left me with a 'poisoned heavy fatigue' on a scale that I hadn't felt for years. It shocked and frightened me, but I kept hoping and believing it would pass. I tried every remedy I could think off, every 'coping strategy'. I was devastated by the realisation that in M.E., time doesn't always heal and time can make you worse again. Five years on I am finally making some progress. I am never complacent and I just hope that my partial remission continues. I try not to think too far ahead and to appreciate the small gains of the moment.'

Information first produced November 2003. Currently under review.