Helping You recover and making the most of Your energy
Managing energy and activity is a key part of dealing with chronic fatigue and helps you to build a strong recovery.
Pacing your activities helps stabilise your symptoms and gives you a sense of control, making things more predictable. It helps you move away from the ‘boom and bust’ pattern of good and bad days, which can leave you feeling stuck in an unhelpful cycle.
Most people with chronic fatigue experience this at some time:
- good day – more energy and feeling better
- rest, taking time off, staying in
- doing more, catching up
- bad day – low energy, more pain, low mood.
Pacing works with your body to make the most of your available energy and avoids making your symptoms worse. Many people find that they begin to improve once they accept the changes brought on by their condition, and follow a realistic and achievable approach to getting better.
Pacing is a way of reorganising how you do everyday things such as attending school or college, keeping in touch with friends and other activities, as well as sleeping and rest. It can actually help you to do more things and feel confident that you will be able to do what you planned.
- keeping a diary to show your activities now and any patterns in your energy levels
- setting regular times for daily activities like sleeping, eating, activity and rest
- working out amounts of activity that are right for you
- gradually increasing activities as you feel able
Making the most of your energy
1. What is activity?
Activity is anything you do that needs energy. This includes:
- physical tasks such as getting up, washing, dressing, as well as walking, travelling and sports
- mental activities like watching TV, using the computer, school work, reading, concentrating and multi-tasking
- social time, on the phone or computer, being with friends or family
- emotional situations, having arguments, feeling low or anxious, or being under stress.
Just being in busy, noisy, bright or hot/cold situations can cause fatigue and can affect how well you feel and how much you can do.
Activities vary as to how much energy they take, and understanding this will help you to manage things more effectively.
2. Keep a diary
Keeping a record of when and what you do helps you to look at your own lifestyle, and plan changes that can help your recovery. You will be given an activity chart during your first appointments with the CFS/ME team.
3. Get organised
Before you make changes to your lifestyle it is important to be consistent about what you are doing. It is helpful to fix times for the regular things you do each day, such as your bed and wake times, meals and rest/quiet times. These form a firm structure for you to plan your activities around. This is the start of you being in control of when and what you do, rather than your symptoms dictating when you can do things.
4. Do what’s right for you
Stopping each activity before you get exhausted will really help to stabilise how you feel, avoiding the roller-coaster of good and bad days. There’s more on this under ‘finding your baseline’.
5. Finding your baseline
Your baseline is the amount of activity you can do without making your symptoms worse. This includes fatigue, pain and brain fog as well as anxiety or low mood.
To be effective your baseline needs to be at a level that you can manage on good and bad days.
At the beginning it might feel like you are doing less because you are staying with an average level of activity rather than following the highs and lows of the boom and bust pattern.
A boom and bust pattern of daily energy – the baseline cuts off the highs and lows.
Each activity has its own baseline that will change as you improve.
A simple way is to set your baseline at half of what you can do on a ‘good’ day.
It’s also important to think about how often you can manage an activity through the week.
Some examples might be:
- seeing friends twice a week for two hours.
- walking the dog every other day for 10 minutes.
- homework 20 minutes per night.
- on the computer – one hour per evening.
Your therapist will be able to help you work out your baseline for all the usual activities and any extra ones that you do occasionally.
When you have set your baseline you need to give your body time to settle into this new way of doing things. This will vary from person to person, but it usually takes a few weeks. You will be ready to gradually increase when your body can consistently manage the levels you have set, without booming and busting.
Golden rule! Resist the temptation to do more on ‘good’ days.
6. Increasing your activities
Once you feel you can manage the things you have planned, without experiencing boom and bust days, you can start to increase your activity levels.
There are several ways to do this:
- Lengthening the time you currently do an activity – perhaps extending how long you walk for, or do homework. Increasing by around 10% is a helpful guide, so if you currently use the computer for 30 minutes per evening, increase to 35 minutes. Remember not to increase everything at the same time as you might end up overdoing things.
- Increasing how often you do something during the week – such as walking the dog twice a week rather than once.
- Adding in an activity that you have stopped doing, or trying a new one. An example might be introducing a few stretches or exercises each day (your therapist can advise you on this), or making contact with an old friend.
7. The effects of changing activity
Our bodies react to change in many ways. You may notice that rather than feeling good or bad, you may feel just OK for a while. This is a good sign that means things are settling down and finding a level. You may also notice some extra stiffness or aches and pains. This is normal and is your body’s response to doing things differently.
Your symptoms will continue to be there for a while and your recovery will happen alongside them, so focusing on what you can do rather than what you can’t will really help you to move on.
It’s useful to be able to distinguish between the usual effects of increasing activity and the negative effects of overdoing things. Feeling stiff or achey after doing a bit more is normal and to be expected. If you notice you are having bad days after being active, then you may need to review your plan.
A good way to manage this is to go back to your original baseline plan and use that until you feel stable again. The Recovery Process in your resource pack explains this in more detail.