This is chapter 1 from the book "Classic Pacing for a Better Life" with ME by Ingebjørg Midsem Dahl.
This chapter is the copyright of the author. No reprint or translation without permission, but feel free to link to this page.
This chapter is the copyright of the author. No reprint or translation without permission, but feel free to link to this page.
Summary of Chapter 1
ME – Living on a Tight Budget
In the early eighties the Scottish doctor Darrel Ho-Yen compared energy to money, and said that healthy people get a hundred dollars a day, while people with ME only get ten, which they have to spread out throughout the day. Recent research has shown that people with ME have several disturbances in energy production in the cells. Therefore, people with ME have less ‘energy money’ to spend than healthy people. It is necessary to learn how to avoid using more ‘money’ than you have in order to maximize the chances of improvement. Exceeding the available amount of energy leads to further deterioration of the cells’ energy production. How can you avoid doing too much?
Understanding Energy
One of the most important things is learning to understand energy. In people with ME overactivity leads to symptom increase, while resting leads to symptom reduction. People with ME can begin to feel worse and worse when they take part in physical or mental activities, until they feel so ill that they are forced to stop. Anna from Great Britain gives a good description of it in this quote:
“I feel really ill, but push myself to crawl out of bed, wash and dress, comb my hair and put on some make-up, since this means a lot to me. Once I am up anyway I feel more motivated and ready to tackle the world. It’s this feeling where I think that I ought to push myself more, but soon I start getting warning signs; : headache, nausea, dizziness, exhaustion. While I push myself to stay active, I realise that I wasn’t that well to begin with, and towards the end of the day I need a lot of help from Mum to undress, wash and get into bed.” (From Cheers magazine, nr . 40).
Warning Signs
Note that Anna describes her symptoms as warning signs. That is exactly what they are. The very first, mild symptoms are warnings that show you that you must stop right away because you are about to overdo it. The stronger symptoms that come later are signs that you have already done too much. In Scandinavia people used to say that people who were out of money had pocket pain. People with ME get real pain and other symptoms when the energy account is empty. In the same way that it is a good idea to keep an eye on how much you have left in your bank account, it is important to keep an eye on how much money you have in your energy account.
The most obvious way of doing this, is to examine how you feel while you are doing things. As soon as you notice that your symptoms are getting worse, you should stop and rest. The problem is that it is very easy to get so absorbed in what you are doing, that you forget to check how you feel. By the time the symptoms are so strong that they interfere with what you are doing, you have already done too much. One possibility is to use the so-called fifty per cent solution that William Collinge describes in his book, “Recovering From ME”. That is about doing half of what you think you can manage. If you think you can walk one kilometre, then you are supposed to only walk half a kilometre. That way you avoid doing too much.
When you use symptoms to decide how long you should do a given activity, it is important to consider all your symptoms, not just exhaustion. Usually, a number of other symptoms turn up before you start to feel exhaustion in your whole body. Some of these can be very mild, like a slight feeling of something protesting in your body. Therefore, in order to be able to stop in time, it can be simpler to do some concrete experiments that can help you find out where your limits are.
Conscious Experiments
One example of a conscious experiment is to decide to try an activity for fifteen minutes, and set an alarm to tell you when to stop. Afterwards you can evaluate your symptom level. If you feel the same as you did before starting the activity, fifteen minutes is fine. If your symptoms are worse, you try to set a shorter activity time next time. It is a good idea to write down your experiments so that you don’t have to try to remember everything. You can copy Worksheet 1 (at the back of the book).
When experimenting, use your previous experience of how much activity you can tolerate as a starting point. If you are exhausted after a two-hour visit from a friend, you should experiment using shorter visits to find the time limit that leaves you still feeling comfortable. If you are bedridden and become worn out after ten minutes, you must experiment with very short activities, preferably of less than five minutes’ duration. Perhaps you can read a cartoon, send an SMS, or listen to a song. You will be surprised that you can continue some activities far longer than others, but this is normal. You might be able to read for twenty minutes, but only listen to music for five minutes, or vice versa. You might find that you have to split some activities into very small spells. Maybe you can manage to wash the toilet or the basin or the shower, but not the whole bathroom. Or perhaps you can manage two bites of bread, but not the whole piece. It is not necessary to give up activities just because you cannot go on for as long as other people. Often splitting things up into smaller spells is enough.
Rest
When you notice the first warning signs, you should rest. For a healthy person things like watching TV, listening to music or reading, are forms of resting. For people with ME that have less energy to use, those sorts of things must be counted as activities. When you have ME, rest has to be total rest. Rest is not just lack of activity but, in Ho-Yen’s money jargon, also the absence of ‘spending money’ Rest gives renewed energy in the same way that a mobile phone needs recharging. The best thing is to rest lying down. Many people are too ill to rest sitting up. If you can sit without symptoms increasing, then you can rest sitting for some or all of your rest periods. Choose a comfortable chair that gives good support so that your body can relax totally, and you may find it more comfortable to put your legs up, too.
Some people feel that they get the best rest when sleeping, while others find that if they sleep too much during the day, they cannot sleep well at night. A third group feel that they only fall asleep during the day if they are really exhausted and that they don’t need to sleep during the day if they get enough rest when awake. No solution suits everyone, so you must find the combination that suits you best.
Not everyone needs much rest during the day. Those who have a mild ME may only need some five minute rests during the day. Those with a ‘moderate’ degree of ME usually need several long rests and often some short ones in between, too. People who are bedridden need to rest all day, breaking up the rest periods with some short activities. It is important to rest for so long that you feel nice and warm, and actually feel a little better. It is also important that you manage to rest mentally, because thinking takes energy. It is just as important that you have some fixed rest periods, which you stick to no matter how well you are feeling. These give you ‘interest on your energy account, and, in time, it may mean that there is ‘more money in your purse’ if you are lucky.
Relaxation
The most efficient form of rest is deep relaxation. The point about deep relaxation is that you rest both your body and your mind, instead of your thoughts continuing to grind around in your head. There are many different techniques that you can use. Sometimes one has to try several before finding the one that suits you best. At the back of this book you will find some suggestions as to CDs you can use. I have written more about relaxation in Chapters 3 and 18.
Switching
Switching is important. Resting is not fun. Having to rest for a long time to get over a very long activity period can be very undermining. It is important to have many short activity periods with rest in between, instead of few and long activity periods. It is also a good idea to switch between different types of activities. Doing the same kind of activity all day will easily lead to overworking certain body parts, while others are not used enough. Here is an example of how you can switch between rest and activity, and between different types of activities:
Listening to music 10 minutes - rest 20 minutes
Walk in the garden 3 minutes – rest 20 minutes
Making a birthday card 10 minutes – rest 20 minutes
Reading 5 minutes – rest 20 minutes
In this example the activities are short, and therefore the rest periods are short. The activities use different body parts; in the first activity the ears, in the next the legs, then the arms and finally, the eyes. Some people will need much shorter activity spells and much longer rest periods. Others can manage longer activity spells before they need rest. Even if you can keep going for a much longer time, it is a good idea to split up the activity periods in several shorter spells. For example, you could try doing three different activities of twenty minutes duration each instead of doing the same type of activity for a full hour. You often get less exhausted using this method.
Enjoying Yourself
Enjoying yourself is an important aspect of pacing. It is necessary, since this illness leads to enormous restrictions, that some activity periods are used for things you really like and which make you happy. Some people might say that it is not possible to enjoy yourself doing something for such a short time, like just ten minutes, but it is. It is definitely possible to enjoy yourself, even if just for ten minutes. What is no fun is having to stop. Then it is important to remind yourself that you are stopping in time in order to avoid feeling worse. You are stopping so that you can enjoy yourself again later that day. That way, stopping in time becomes a positive instrument to use, not just a nuisance. Many hobbies and interests can be adjusted so that they can be done by people with different levels of functioning, even from a bed or sofa. Even activities that take place outside the house can often be adjusted so that they need less energy than usual. It is worthwhile looking at new aspects of yourself, or to renew old hobbies that you haven’t enjoyed for a long time. Life does not have to be over just because you cannot run a marathon.
Other Factors That Affect Your Illness
Pacing is not the only positive factor that can affect the health of people with ME, nor is overdoing activity the only thing that can have a negative effect. Overstimulating the senses, stress, infections, food intolerance, hormone changes and weather changes are other factors that can have a negative effect. Coping and treating these factors can help improve your health. It is not unusual for people to discover that using different coping techniques at the same time has a stronger effect than just one technique. However, be smart to just introduce one technique at a time, so you don’t get overwhelmed. Part of the reason there are so many other factors that affect the illness lies with the disease process itself. ME affects all organ systems, and creates a complex network of biochemical disturbances. The stubbornness and severity of these vary greatly. This is why competent use of pacing and other management techniques only eases the burden a little for some people, whereas others find that they cause significant improvement in their health.
Who Can Help With Pacing?
If you find it particularly difficult to learn pacing on your own, it is possible to get help, but availability and quality vary greatly between areas. Part of the reason for this is that national guidelines for the treatment of ME differ. If pacing is not the favoured management strategy in your country it may be difficult to get professional help.
Most healthcare professionals have been trained to help motivate people to try coping techniques, and this may be helpful if you find that lack of motivation to learn pacing is a problem. Occupational therapists and physiotherapists learn basic energy conservation skills in their training. However, many healthcare professionals specialize in completely different areas of their field, and they may lack the experience, interest or knowledge to help you. One of the most common pitfalls seems to be that the professional may get impatient and will push the patient to take on too much activity too soon, which will bring on a relapse. Other patients have received valuable help from professionals who have worked with them. One example of this is described in Heidi’s patient experience, between Chapters 6 and 7.
Local ME-groups usually know whether help is available where you live. Both local and national ME-groups may have advisory services and information material, which may be of some help. It can be beneficial to team up with others with ME to learn pacing. You can motivate each other and learn from each other’s experiences, cutting some corners in the learning process. There is an online self-help course for people with ME, in which pacing features heavily. The course is available in both English and Spanish and costs very little. You can read more about it on www.cfidsselfhelp.org
Others Cannot Pace for You
Please bear in mind that pacing is essentially a self-management method. The signs and symptoms that are visible to others tend to be signs of overexertion. The early warning signs are usually not noticeable to others. This means we are the ones who have to learn to recognize them and act upon them. Others cannot pace for us. What others may be able to help with is to keep track of our experiments when we have bad cognitive symptoms. They may also be able to help us think of good practical solutions and motivate us to keep pacing even when it is challenging.
The Advantages of Pacing
Since ME limits you so much, it can seem like a double punishment to have to limit yourself. That makes it important to focus on the advantages of pacing. First of all, pacing usually makes you feel more comfortable because you stop before you feel really ill. Also, in the long run, pacing provides the conditions your body needs for the best chance of a general improvement. The course of the illness varies depending on many other factors such as infections. However, when you stay within your limits, you may well find they slowly expand. Thirdly, and this is perhaps the most important thing, pacing gives you more control over the illness and, with that, more control over your own life. When you stop in time and rest, you are steering the ME, instead of it steering you. Without pacing it is easy to feel like a passive victim on an endless roller coaster. One doesn’t know how one is going to feel tomorrow and therefore planning becomes nearly impossible. With pacing the illness becomes more stable and it is possible to plan which small activities one can enjoy tomorrow. Best of all, you are giving your body what it needs, and increasing your chances of feeling better.
- Activity beyond a certain limit leads to an increase in ME symptoms. The longer you continue to push yourself, the worse the symptoms will get. The symptoms serve as warning signs, showing that you have done too much. You can experiment gently to find out where the limit is.
- Rest recharges the body’s batteries and reduces symptoms.
- Avoid symptom flare-ups by stopping all activities before the symptoms become worse, or at the first warning sign.
- By switching between rest and short activities, you can avoid draining your energy reserves during the day.
- You can get more out of your energy by switching between physical, social and mental activities, and also between activities that use different parts of your body.
- Make sure to include some pleasant activities in your day and not just chores and necessities.
ME – Living on a Tight Budget
In the early eighties the Scottish doctor Darrel Ho-Yen compared energy to money, and said that healthy people get a hundred dollars a day, while people with ME only get ten, which they have to spread out throughout the day. Recent research has shown that people with ME have several disturbances in energy production in the cells. Therefore, people with ME have less ‘energy money’ to spend than healthy people. It is necessary to learn how to avoid using more ‘money’ than you have in order to maximize the chances of improvement. Exceeding the available amount of energy leads to further deterioration of the cells’ energy production. How can you avoid doing too much?
Understanding Energy
One of the most important things is learning to understand energy. In people with ME overactivity leads to symptom increase, while resting leads to symptom reduction. People with ME can begin to feel worse and worse when they take part in physical or mental activities, until they feel so ill that they are forced to stop. Anna from Great Britain gives a good description of it in this quote:
“I feel really ill, but push myself to crawl out of bed, wash and dress, comb my hair and put on some make-up, since this means a lot to me. Once I am up anyway I feel more motivated and ready to tackle the world. It’s this feeling where I think that I ought to push myself more, but soon I start getting warning signs; : headache, nausea, dizziness, exhaustion. While I push myself to stay active, I realise that I wasn’t that well to begin with, and towards the end of the day I need a lot of help from Mum to undress, wash and get into bed.” (From Cheers magazine, nr . 40).
Warning Signs
Note that Anna describes her symptoms as warning signs. That is exactly what they are. The very first, mild symptoms are warnings that show you that you must stop right away because you are about to overdo it. The stronger symptoms that come later are signs that you have already done too much. In Scandinavia people used to say that people who were out of money had pocket pain. People with ME get real pain and other symptoms when the energy account is empty. In the same way that it is a good idea to keep an eye on how much you have left in your bank account, it is important to keep an eye on how much money you have in your energy account.
The most obvious way of doing this, is to examine how you feel while you are doing things. As soon as you notice that your symptoms are getting worse, you should stop and rest. The problem is that it is very easy to get so absorbed in what you are doing, that you forget to check how you feel. By the time the symptoms are so strong that they interfere with what you are doing, you have already done too much. One possibility is to use the so-called fifty per cent solution that William Collinge describes in his book, “Recovering From ME”. That is about doing half of what you think you can manage. If you think you can walk one kilometre, then you are supposed to only walk half a kilometre. That way you avoid doing too much.
When you use symptoms to decide how long you should do a given activity, it is important to consider all your symptoms, not just exhaustion. Usually, a number of other symptoms turn up before you start to feel exhaustion in your whole body. Some of these can be very mild, like a slight feeling of something protesting in your body. Therefore, in order to be able to stop in time, it can be simpler to do some concrete experiments that can help you find out where your limits are.
Conscious Experiments
One example of a conscious experiment is to decide to try an activity for fifteen minutes, and set an alarm to tell you when to stop. Afterwards you can evaluate your symptom level. If you feel the same as you did before starting the activity, fifteen minutes is fine. If your symptoms are worse, you try to set a shorter activity time next time. It is a good idea to write down your experiments so that you don’t have to try to remember everything. You can copy Worksheet 1 (at the back of the book).
When experimenting, use your previous experience of how much activity you can tolerate as a starting point. If you are exhausted after a two-hour visit from a friend, you should experiment using shorter visits to find the time limit that leaves you still feeling comfortable. If you are bedridden and become worn out after ten minutes, you must experiment with very short activities, preferably of less than five minutes’ duration. Perhaps you can read a cartoon, send an SMS, or listen to a song. You will be surprised that you can continue some activities far longer than others, but this is normal. You might be able to read for twenty minutes, but only listen to music for five minutes, or vice versa. You might find that you have to split some activities into very small spells. Maybe you can manage to wash the toilet or the basin or the shower, but not the whole bathroom. Or perhaps you can manage two bites of bread, but not the whole piece. It is not necessary to give up activities just because you cannot go on for as long as other people. Often splitting things up into smaller spells is enough.
Rest
When you notice the first warning signs, you should rest. For a healthy person things like watching TV, listening to music or reading, are forms of resting. For people with ME that have less energy to use, those sorts of things must be counted as activities. When you have ME, rest has to be total rest. Rest is not just lack of activity but, in Ho-Yen’s money jargon, also the absence of ‘spending money’ Rest gives renewed energy in the same way that a mobile phone needs recharging. The best thing is to rest lying down. Many people are too ill to rest sitting up. If you can sit without symptoms increasing, then you can rest sitting for some or all of your rest periods. Choose a comfortable chair that gives good support so that your body can relax totally, and you may find it more comfortable to put your legs up, too.
Some people feel that they get the best rest when sleeping, while others find that if they sleep too much during the day, they cannot sleep well at night. A third group feel that they only fall asleep during the day if they are really exhausted and that they don’t need to sleep during the day if they get enough rest when awake. No solution suits everyone, so you must find the combination that suits you best.
Not everyone needs much rest during the day. Those who have a mild ME may only need some five minute rests during the day. Those with a ‘moderate’ degree of ME usually need several long rests and often some short ones in between, too. People who are bedridden need to rest all day, breaking up the rest periods with some short activities. It is important to rest for so long that you feel nice and warm, and actually feel a little better. It is also important that you manage to rest mentally, because thinking takes energy. It is just as important that you have some fixed rest periods, which you stick to no matter how well you are feeling. These give you ‘interest on your energy account, and, in time, it may mean that there is ‘more money in your purse’ if you are lucky.
Relaxation
The most efficient form of rest is deep relaxation. The point about deep relaxation is that you rest both your body and your mind, instead of your thoughts continuing to grind around in your head. There are many different techniques that you can use. Sometimes one has to try several before finding the one that suits you best. At the back of this book you will find some suggestions as to CDs you can use. I have written more about relaxation in Chapters 3 and 18.
Switching
Switching is important. Resting is not fun. Having to rest for a long time to get over a very long activity period can be very undermining. It is important to have many short activity periods with rest in between, instead of few and long activity periods. It is also a good idea to switch between different types of activities. Doing the same kind of activity all day will easily lead to overworking certain body parts, while others are not used enough. Here is an example of how you can switch between rest and activity, and between different types of activities:
Listening to music 10 minutes - rest 20 minutes
Walk in the garden 3 minutes – rest 20 minutes
Making a birthday card 10 minutes – rest 20 minutes
Reading 5 minutes – rest 20 minutes
In this example the activities are short, and therefore the rest periods are short. The activities use different body parts; in the first activity the ears, in the next the legs, then the arms and finally, the eyes. Some people will need much shorter activity spells and much longer rest periods. Others can manage longer activity spells before they need rest. Even if you can keep going for a much longer time, it is a good idea to split up the activity periods in several shorter spells. For example, you could try doing three different activities of twenty minutes duration each instead of doing the same type of activity for a full hour. You often get less exhausted using this method.
Enjoying Yourself
Enjoying yourself is an important aspect of pacing. It is necessary, since this illness leads to enormous restrictions, that some activity periods are used for things you really like and which make you happy. Some people might say that it is not possible to enjoy yourself doing something for such a short time, like just ten minutes, but it is. It is definitely possible to enjoy yourself, even if just for ten minutes. What is no fun is having to stop. Then it is important to remind yourself that you are stopping in time in order to avoid feeling worse. You are stopping so that you can enjoy yourself again later that day. That way, stopping in time becomes a positive instrument to use, not just a nuisance. Many hobbies and interests can be adjusted so that they can be done by people with different levels of functioning, even from a bed or sofa. Even activities that take place outside the house can often be adjusted so that they need less energy than usual. It is worthwhile looking at new aspects of yourself, or to renew old hobbies that you haven’t enjoyed for a long time. Life does not have to be over just because you cannot run a marathon.
Other Factors That Affect Your Illness
Pacing is not the only positive factor that can affect the health of people with ME, nor is overdoing activity the only thing that can have a negative effect. Overstimulating the senses, stress, infections, food intolerance, hormone changes and weather changes are other factors that can have a negative effect. Coping and treating these factors can help improve your health. It is not unusual for people to discover that using different coping techniques at the same time has a stronger effect than just one technique. However, be smart to just introduce one technique at a time, so you don’t get overwhelmed. Part of the reason there are so many other factors that affect the illness lies with the disease process itself. ME affects all organ systems, and creates a complex network of biochemical disturbances. The stubbornness and severity of these vary greatly. This is why competent use of pacing and other management techniques only eases the burden a little for some people, whereas others find that they cause significant improvement in their health.
Who Can Help With Pacing?
If you find it particularly difficult to learn pacing on your own, it is possible to get help, but availability and quality vary greatly between areas. Part of the reason for this is that national guidelines for the treatment of ME differ. If pacing is not the favoured management strategy in your country it may be difficult to get professional help.
Most healthcare professionals have been trained to help motivate people to try coping techniques, and this may be helpful if you find that lack of motivation to learn pacing is a problem. Occupational therapists and physiotherapists learn basic energy conservation skills in their training. However, many healthcare professionals specialize in completely different areas of their field, and they may lack the experience, interest or knowledge to help you. One of the most common pitfalls seems to be that the professional may get impatient and will push the patient to take on too much activity too soon, which will bring on a relapse. Other patients have received valuable help from professionals who have worked with them. One example of this is described in Heidi’s patient experience, between Chapters 6 and 7.
Local ME-groups usually know whether help is available where you live. Both local and national ME-groups may have advisory services and information material, which may be of some help. It can be beneficial to team up with others with ME to learn pacing. You can motivate each other and learn from each other’s experiences, cutting some corners in the learning process. There is an online self-help course for people with ME, in which pacing features heavily. The course is available in both English and Spanish and costs very little. You can read more about it on www.cfidsselfhelp.org
Others Cannot Pace for You
Please bear in mind that pacing is essentially a self-management method. The signs and symptoms that are visible to others tend to be signs of overexertion. The early warning signs are usually not noticeable to others. This means we are the ones who have to learn to recognize them and act upon them. Others cannot pace for us. What others may be able to help with is to keep track of our experiments when we have bad cognitive symptoms. They may also be able to help us think of good practical solutions and motivate us to keep pacing even when it is challenging.
The Advantages of Pacing
Since ME limits you so much, it can seem like a double punishment to have to limit yourself. That makes it important to focus on the advantages of pacing. First of all, pacing usually makes you feel more comfortable because you stop before you feel really ill. Also, in the long run, pacing provides the conditions your body needs for the best chance of a general improvement. The course of the illness varies depending on many other factors such as infections. However, when you stay within your limits, you may well find they slowly expand. Thirdly, and this is perhaps the most important thing, pacing gives you more control over the illness and, with that, more control over your own life. When you stop in time and rest, you are steering the ME, instead of it steering you. Without pacing it is easy to feel like a passive victim on an endless roller coaster. One doesn’t know how one is going to feel tomorrow and therefore planning becomes nearly impossible. With pacing the illness becomes more stable and it is possible to plan which small activities one can enjoy tomorrow. Best of all, you are giving your body what it needs, and increasing your chances of feeling better.
Copyright© Ingebjørg Midsem Dahl 2018
Classic Pacing for a Better Life with ME
by Ingebjørg Midsem Dahl
ISBN 978-1-9996418-0-1
by Ingebjørg Midsem Dahl
ISBN 978-1-9996418-0-1
