Management

Learn to listen to how your body is feeling

When we're healthy and we start to feel tired we often push on and finish what we're doing, and that's OK because we're healthy. But, if you have ME/CFS you have to learn to stop before you start to feel heavy and exhausted, because otherwise you may well slump over the next few days.

It's quite likely that at the beginning you won't be having any days that you feel good, in that case try doing something for 5 minutes and see how you feel over the next couple of days. If you don't feel worse then try 5 minutes again, and then the next time maybe 10 minutes.

Remember that slow progress is much, much better than doing too much and then plunging back down the hill and starting over, or maybe even feeling worse than before.

Anne's Story

I tell people that there is 1 snail inside me working at making me better - and that it works to rule!! Dead slow is the only pace, but I am lucky that I do have that improvement. At that speed I have managed to improve from only going out to visit the doctor, sleeping for approximately 20 hours a day and feeling really really poorly all of the time with many symptoms, to feeling well most of the time.

I can now manage to work a 4 and a 1/2 day week and keep the house fairly clean and tidy. At work I have had a very understanding manager who hasn't ever put me under pressure at work (I started back 12 hours a week spread over 4 days). It's taken me 5 years to get this far but the quality of life I have now has made it all worthwhile. I still plan how much I am going to do each week, and then each day and take breaks where I need them.

I am always conscious of how I feel and as much as possible will stop if I feel myself getting weary. I also err on the side of caution and avoid situations which may be too much - such as long journeys or planning to do very much after I've been to work.

Not everybody's illness is the same, my story is what has been right for me. You need to listen to your own body and act accordingly.

Keeping a Diary

As recovery from this illness is slow and your symtoms fluctuate over time it's not always easy to determine whether you're making progress or not. You may find it useful to keep a brief diary for a while - good days, bad days, symptoms, how much activity you have been capable of. Looking back over this record can help you to determine what is good for you, and what you should avoid if you want to stop riding on a rollercoaster.

When you're very poorly don't aim to write every day, 2 or 3 times a week may be sufficient. You may find that there is one time of day when this is easiest, perhaps when you first wake. You should develop your own time and method for writing it, depending on how you are feeling.

Looking back over this record can help you to determine what is good for you, and what you should avoid. For example you may see patterns emerging.

You may also find it useful to look at a scale of severity and decide where you are now so that you can periodically review this to see if a pattern exists to your illness.