As with many chronic illness one of the most crucial factors to managing ME/CFS is making sure that we don’t overdo things. But one of the most frustrating things about this illness is that our ability level seems to chance from one day to the next, often without any obvious reason. Sometimes doing what we could do yesterday, or even what we’ve been doing for the last few weeks, is suddenly too much. And when do we know that it’s safe to try to do a little bit more than usual?
We have to learn to become sensitive to these daily changes and respond to them very carefully. This learning process usually involves trial and error, and with it comes the frustrating boom and bust cycles typical to this illness. This constant attention to your energy levels and what you think you might or might not be able to do today is probably the most difficult thing to understand for someone who has not experienced this illness. I would well recommend the wonderful spoon theory
for anybody who wants help communicating what its like.
I’ve developed some scales that I believe can help reduce the trial and error/ boom and bust cycle involved in learning to assess your daily ability level. The following is an edited excerpt from the self-help book I am writing, I hope it helps:
Close your eyes for a moment and devote all your attention to your body and how you are feeling. Then mark the point on each of the following lines from 0 to 10 that seems appropriate to how you are feeling right now. Think about 0 being as bad as it could possibly be and 10 being as good as it would be if you were completely healthy. Try not to overthink it – just trust your instinct and, with practice it will become an extremely accurate tool:
Slept badly woke feeling exhausted 0 1 2 3 4 5 6 7 8 9 10 Slept well woke feeling refreshed (#am)
Body is totally lacking in energy 0 1 2 3 4 5 6 7 8 9 10 Body is feeling totally energised
Very painful, stiff and heavy muscles 0 1 2 3 4 5 6 7 8 9 10 No pain, light and flexible muscles
Mentally exhausted and very foggy 0 1 2 3 4 5 6 7 8 9 10 Mentally alert and clear headed
Severe flu like symptoms * 0 1 2 3 4 5 6 7 8 9 10 No flu like symptoms
(*headache/sore throat/achy joints and bones)
Feeling very under the weather/unwell 0 1 2 3 4 5 6 7 8 9 10 Feeling fully myself and full of wellbeing
Unable to relax, feeling tense and exhausted 0 1 2 3 4 5 6 7 8 9 10 Feel rested and relaxed from good pacing and taking regular breaks (#pm)
You could do these scales in the morning and in the evening. In the evening use the question about feeling tense/relaxed instead of the question about how you slept. When you first start these ratings you could do them several times a day to see if there is a particular time of day for you when you regularly have more energy, then you can use this to plan your activity and rest. There may be particular times of day for you that will be more appropriate for physical activity and others that will be better for mental activity.
Take an average of all the scales to achieve a wellness grade. This can guide you as to how much activity you might get away with. For example if your wellness grade is better than yesterday’s you know you can do at least as much as yesterday and perhaps a little more, but remember to increase activity very gradually. If your wellness grade is dramatically lower than yesterday’s then you know you need to take it easy, have a restful day and give your body a chance to recuperate. If your evening wellness grade is much lower than your morning one, it may be a sign that you’ve done too much that day. If your wellness grade is higher in the evening than in the morning this could be a sign that you are sleeping for too long.
It is also useful to keep a record of what you do throughout the day. This will help you to get a clear idea of what sort of activity is ok and what is too much. You can expect your evening grade to be a little lower than your morning one. Aim to cut down the difference to no more than 2 or 3 points. Sometimes overdoing it might not show up for a day or two so keep an eye on your last two days records as well. Remember that a drop in your wellness rating may not always be related to your activity as it may be a response to a new infection, or a variety of other things that can worsen this condition. If you can’t work out what has caused this drop the most important thing is that you respond to it by having a restful day.
I find that I have to pay particular attention to a sore throat. For me, this is often a sign of a new infection, or at least that my body is struggling with something. You may find that there are other indicators of an infection particular to you that you will want to pay attention to. You may wish to add another scale if you have a particular symptom not used in this rating that you feel is a particularly good indicator of your general health. Use this questionnaire as a tool to get to know your body better and how it responds to this illness. After a few weeks you probably won’t need the scales any more, you’ll get used to paying attention to and interpreting all the little signs in your body on a regular basis. You’ll start to recognise how many spoons you have today!