People who experience prolonged and severe symptoms of pain or fatigue, often try to manage it by:
1) Resting more and reducing activity in the hope of feeling better and to prevent symptoms from getting worse.
2) Pushing themselves to do as much as possible when they can, and rest more when symptoms get worse (‘all or nothing’ behaviour).
Many people use both of these strategies. They are natural, understandable ways to try to manage symptoms. However, when you rest more and reduce activity in an attempt to get better:
. Your cardiovascular system becomes unfit, resulting in symptoms including palpitations, sweating, breathlessness and fatigue.
. You lose muscle tone or strength in your legs, resulting in less blood returning to the heart. This can lead to a drop in blood pressure when you stand up, with less blood going to the brain, causing unpleasant symptoms including dizziness and fatigue.
. Your quality of sleep can be poor.
. You can lack motivation and energy.
When this happens, you are likely to reduce your activity further. You will then experience increased symptoms when you are active due to reduced physical fitness and reduced muscle strength, so you rest even more, and the cycle goes on.
Others may be over-active and push themselves on the good days, leading to a flare-up of symptoms, followed by long periods of inactivity to recover. You can then find yourself in a ‘boom and bust’ cycle.
One way of both preventing and managing fatigue and/or pain is to adopt a consistent approach to activity, sleep and rest. Pacing enables you to plan and monitor your activities so that you feel more in control of everyday life and your symptoms. Finding a helpful pacing style means:
· Reaching a balanced pattern of varied activity at a steady pace, using time or distance not your symptoms as a guide.
· Doing some activity even at times when you don’t feel like it e.g. when you are tired, in pain or feeling down.
· Not overdoing activities on better days.
· Doing the same or similar levels activity every day.
· Steadily increasing the amount you do and the types of activity over time.
The first step is to keep an activity diary over a week, writing down what you are doing hour-by-hour from when you wake up to when you go to sleep at night. This will allow you to see any problems in your pattern of activities.
Add up the total number of hours of rest that you had over the week. Rests are times such as watching TV, listening music or reading. Divide this by 7. E.g. total rest over 7 days = 21 hours, 21 / 7 = 3, amount of rest to be taken each day: 3 hours.
We have looked at how you can learn to manage symptoms of pain and fatigue by pacing yourself. The first step is to complete an activity diary to calculate the amount of rest you had over the week and divide by 7. This gives you the amount of rest you need to take each day.
You now need to make a plan for each day or week and try to stick to it, where possible. This will be personal to you.
Examples of an initial activity program
For someone who is resting for about 6 hours a day:
· Get up and get dressed by 8am
· Have 6 one-hour rests in a chair, evenly spaced throughout the day
· Go for two 10 minute walks a day
· Do chores for 15 minutes twice a day
· Talk to friend for 10 minutes three times a week
· Go to bed by 10.30pm
For someone who works full-time:
· Have at least two 15 minutes breaks and half-hour lunch break everyday
· To leave work on time at least twice a week
· To have half an hour of exercise at least twice a week
· To spend one hour a day resting
· To go out once a week for 2 hours of socialising
· Go to bed by 11pm
Try to adopt a consistent approach to activities – even if at first you feel you are doing slightly less. You will then be in a better position to either increase or reduce what you are doing, if you need to. Try to balance chores and enjoyable activities.
It will be more of a challenge to carry out your activities on bad days. But by sticking to a routine you will start to gain control over your life and symptoms rather than allowing your symptoms to control you. Remember that resting is not always the best way of dealing with symptoms, and often by distracting ourselves with activity we can lessen the impact of the symptoms.
Tell other people what you are doing and why, and inform others of how they can help. Make sure you identify any barriers to improving your pacing. Think about how you and others can tackle those barriers.
Try not to be too hard on yourself. People’s activity patterns have often been developed over a long time and it will take time and effort to change. Notice and acknowledge any small changes you make. Reward yourself when you make a helpful change.
Continue to write down what you are doing in your activity diary so that you can monitor your progress. Once you have established a consistent pattern of activity and rest and you are achieving your targets, you can start to alter the amount of activity and rest you have each day. Make changes slowly and steadily – at least one revision a month, working towards your medium-term goals and finally your long-term goals.
Your therapist at the British CBT and Counselling Service will be able to support you to devise an activity programme that works for you.