If you have ME, you have undoubtedly discovered that the symptoms vary in intensity and in number. However, have you ever noticed how your symptoms are affected by activity? Let’s use writing as an example. When you first start writing, you may feel relatively okay. Soon, however, you will notice that your fingers and hand are getting tired. This will gradually worsen into muscle fatigue and aches. By then you may also start experiencing cognitive problems such as concentration problems, difficulty remembering what you wanted to write, and perhaps writing the letters in the wrong order. As the exhaustion in your arm worsens, you will typically also notice symptoms from the rest of your body. This may start as fatigue in your legs and back, and will gradually worsen to a wide range of symptoms. You’ll finally move on to feeling really ill. The exact number and order of symptoms will vary from person to person. How long it takes to reach this point will vary depending on the severity of your illness and what you’ve been doing previously. If you are well rested at the outset, you will typically be able to go on for longer than if you were exhausted by the time you started. The descriptions I’ve given are just examples to show the principle. When you combine the research mentioned in the previous article in this series with the description of symptom increase I’ve just given, it’s easy to see that symptoms are warning signs. The increase in small, often peripheral symptoms early in the activity are warning signs that you are about to reach your limit. The large symptom flare-up towards the end signifies that you’ve already overexerted yourself and have provoked an increase in illness activity in your body. You may not be accustomed to viewing your symptoms as warning signs. Learning to notice symptom increases is a very important skill in ME, and it’s the first step towards pacing. Try the following task to train this ability.
Task:
Over the next few days, notice symptom increases. These could be small ones, such as your legs tiring when walking to the car, or your jaw aching when chewing. They could also be large ones. For instance, a round of grocery shopping might cause a symptom flare-up bad enough to leave you wiped out on the sofa for several hours. It could even force you to spend three days in bed. You may want to write down some of your observations, or record them on your mobile. However, if you don’t have the energy for that, it doesn’t matter. The important thing is noticing what is going on, not writing it down.
Listening to Your Body
Listening to your body is a central part of pacing. It consists of two things. The first part of listening to one’s body is to notice the warning signs. The second part is to act on them and actually stay within one’s energy limits. Regarding the first part, warning signs of overactivity are the most central to pacing. It also helps to notice any other sign your body may be sending out, such as thirst or hunger. Strictly speaking these have nothing to do with pacing, but they are an important part of general self-care. Getting suitable amounts of food and drink, and covering other basic needs, will make it a lot easier to interpret your body’s warning signs, because the signals relevant to pacing will be less mixed with other things. From a pacing point of view, the most important signs are those caused by overexertion. However, noticing these is only the first step. The second step is to act on them.
In pacing terms, what the body usually asks for is either rest or variation. Slightly larger symptom increases, where the general lack of energy increases, is a sign that you need total rest. Lie down and rest as soon as this happens and preferably rest until you feel slightly better than you did before you started the activity. Generally pacing is more effective if you listen to the small signs. Basically, if you stop before you feel awful, you’ll feel less awful. A high background level of symptoms and/or great instability are usually signs that more rest is needed. If your illness is at the severe end of the spectrum you will likely find that even minimal activity brings on significant warning signs. You will typically need total rest during large parts of the day in order to keep the symptoms under control. At this stage, pacing can be very frustrating, as you have so little energy to budget with.
When you are less ill and the gradual increase in symptom level happens more slowly, pacing will be easier. You will be able to stop when the warning signs are mild. The first very slight signs, which are usually peripheral, show that this particular body part needs to rest, but not necessarily the entire body. So if you’re writing and your fingers start to get a little tired, you can switch to another activity which doesn’t require using your fingers. That could be listening to an audio book or walking around the room watering some plants with the other hand, or some other activity which doesn’t require using the same muscles you’re using when writing. After a while you might be able to switch to a third activity and then perhaps go back to writing again. For people with very mild ME switching between different activities, such as physical, mental and social activities, and activities that use different body parts, may be all the pacing they need. However, most people with ME are so ill that they need some periods of total rest, when the body really gets to regenerate. The next article in this series will take a closer look at resting.
Task:
When you notice signals from your body, try to determine what your body is asking for; variation, rest, or perhaps something else. If you have a high symptom level, you may find that your body is asking for more rest than you would like.
Copyright Ingebjørg Midsem Dahl 2019.
ME groups are welcome to reprint this article in their newsletter or link to it provided that nothing is changed. If you choose to translate it, please email me: post@pacinginfo.eu
Task:
Over the next few days, notice symptom increases. These could be small ones, such as your legs tiring when walking to the car, or your jaw aching when chewing. They could also be large ones. For instance, a round of grocery shopping might cause a symptom flare-up bad enough to leave you wiped out on the sofa for several hours. It could even force you to spend three days in bed. You may want to write down some of your observations, or record them on your mobile. However, if you don’t have the energy for that, it doesn’t matter. The important thing is noticing what is going on, not writing it down.
Listening to Your Body
Listening to your body is a central part of pacing. It consists of two things. The first part of listening to one’s body is to notice the warning signs. The second part is to act on them and actually stay within one’s energy limits. Regarding the first part, warning signs of overactivity are the most central to pacing. It also helps to notice any other sign your body may be sending out, such as thirst or hunger. Strictly speaking these have nothing to do with pacing, but they are an important part of general self-care. Getting suitable amounts of food and drink, and covering other basic needs, will make it a lot easier to interpret your body’s warning signs, because the signals relevant to pacing will be less mixed with other things. From a pacing point of view, the most important signs are those caused by overexertion. However, noticing these is only the first step. The second step is to act on them.
In pacing terms, what the body usually asks for is either rest or variation. Slightly larger symptom increases, where the general lack of energy increases, is a sign that you need total rest. Lie down and rest as soon as this happens and preferably rest until you feel slightly better than you did before you started the activity. Generally pacing is more effective if you listen to the small signs. Basically, if you stop before you feel awful, you’ll feel less awful. A high background level of symptoms and/or great instability are usually signs that more rest is needed. If your illness is at the severe end of the spectrum you will likely find that even minimal activity brings on significant warning signs. You will typically need total rest during large parts of the day in order to keep the symptoms under control. At this stage, pacing can be very frustrating, as you have so little energy to budget with.
When you are less ill and the gradual increase in symptom level happens more slowly, pacing will be easier. You will be able to stop when the warning signs are mild. The first very slight signs, which are usually peripheral, show that this particular body part needs to rest, but not necessarily the entire body. So if you’re writing and your fingers start to get a little tired, you can switch to another activity which doesn’t require using your fingers. That could be listening to an audio book or walking around the room watering some plants with the other hand, or some other activity which doesn’t require using the same muscles you’re using when writing. After a while you might be able to switch to a third activity and then perhaps go back to writing again. For people with very mild ME switching between different activities, such as physical, mental and social activities, and activities that use different body parts, may be all the pacing they need. However, most people with ME are so ill that they need some periods of total rest, when the body really gets to regenerate. The next article in this series will take a closer look at resting.
Task:
When you notice signals from your body, try to determine what your body is asking for; variation, rest, or perhaps something else. If you have a high symptom level, you may find that your body is asking for more rest than you would like.
Copyright Ingebjørg Midsem Dahl 2019.
ME groups are welcome to reprint this article in their newsletter or link to it provided that nothing is changed. If you choose to translate it, please email me: post@pacinginfo.eu
