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Relapses Relapses
A source of major annoyance, anger and frustration for ME sufferers is that they frequently suffer from relapses. When I have a relapse there is usually quite a clear pattern of symptoms that emerges. My lymph glands become enlarged, suggesting that my immune system is fighting something (see "Research" for more). My nausea becomes very bad and I lose my appetite which sometimes means I am stuck on liquid food for a day! My muscles twitch a lot more than they normally do and in addition I find that I get exhausted a lot more easily. This naturally means that my brain gets tired too (when you consider that the brain uses over 50% of the body's energy this is not surprising!) and so I might become more irritable (ask my housemates) and lose concentration and memory recall more easily.

Relapses are a real problem because they prevent the sufferer from planning their future whether that is simply the week ahead or the forthcoming year. For me they have made getting back to work extremely difficult because I know that even though I may be having a good week it is quite possible that the following week will be a bad one. As far aas most employers are concerned this is an untenable position because, understandably, they can't simply accept that you go in only on the "good" days whilst they happily pay you a full salary. The world doesn't work that way!

In my own circumstances the best way of coping is to expect relapses to occur, but if they don't then so much the better. It is always wise to work on the assumption that if you have been suffering from ME then you will suffer a relapse if you do too much when your body simply cannot cope. It is much, much better to accept your limitations and do things in moderation, then you will have a much better chance of avoiding relapses (see "Help Yourself")! But do not fret! It has taken me 7 years to work out my own limitations and the factors that make my ME worse. It is all about you working out the lifestyle that is best for you, and is actually about you being more assertive and honest to yourself.

It is quite difficult to predict when relapses occur, and sometimes they simply happen without any apparent explanation. However, I do think that in my own circumstances I have been able to identify certain things which are more likely to lead to relapses. I have outlined these factors below and there is more on this subject in "Help Yourself":

  • Overdoing it - I try to stick to a 70% level of what I think I can do (which is not the same as what I can actually do!)
  • Stress - learn how to cope with stress as there is a lot of evidence to suggest that stress affects the immune system through an increase in cortisol levels
  • Alcohol - I have learnt the hard way that binge drinking can make me feel very ill for a number of weeks
  • Infections - obviously it is difficult to avoid these!


In my experience there is a lot that you can do to make your life easier. In fact I think that ME has made me adjust my lifestyle to such an extent that I am actually a better, more rounded and certainly wiser person for it. I think that the time with ME forces you to re-evaluate your priorities in life - see the page about me for more!
Back to Top Next...the day-to-day problems of having ME/CFS



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