If your symptoms include fatigue, one of the most important self-management tools is "pacing," also called "living within the energy envelope". This means changing your behavior to prevent or reduce how long and how severe your symptoms are after finishing an activity. Otherwise, you may experience "payback" symptoms from physical and cognitive activities.
Your plan for energy management will be unique to you. Every person experiences a unique relationship between their physical activity and their fatigue, so every person needs their own plan. Pacing can be challenging and takes time to master. It is important to consider whether being too inactive ("sedentary") in general or having extreme "peaks and valleys" in your activity levels are causing health problems and contributing to your fatigue. Once you have a better understanding of how different types and patterns of physical activity affect how you feel, you can do something about it.
Plan Day-by-Day to Manage Your EnergyBack to top
Your plan for energy management will be unique to you. Every person experiences a unique relationship between their activity and their symptoms so, every person needs their own plan for how to manage their physical activity. Therefore, it is important to consider whether being too inactive ("sedentary") in general or having extreme "peaks and valleys" in your activity levels are causing problems for your health. Then, when you have a better understanding of how different types and patterns of physical activity affect how you feel, you can do something about it.
It is often helpful for people to think about managing their energy daily. This is because we often start our day thinking about what we plan to do that day. We think about things we must do, such as going to appointments, taking care of basic needs, or going to work. We might also think about things we would like to do if we have the time and energy, such as reading a book, talking on the phone with a friend, or exercising. To do the activities that you must do or would like to do, you may need to think about how to manage your activity and your energy across the day.
You may already know if you have times of the day when you tend to feel more tired or when your symptoms are worse. It is normal to experience some ups-and-downs in your energy, pain, and mood throughout the day. Managing your activity and energy by planning your day can help you avoid extreme peaks in your symptoms and help you to keep engaged in your activities throughout the whole day. One strategy for avoiding peaks in your symptoms is to pace activities that tire you out or increase your pain. This strategy, which is covered in the next section, can be used as part of your daily plan for managing energy.
As you plan your day, think about how every activity uses energy (whether it’s something you must do or something you want to do). You might expect some things to be especially tiring and other things to be less tiring. You can also think about how some activities give you more energy. It is important to include things that renew your energy throughout the day. This will help you to accomplish the things you would like to do during the day. Balancing activities that take energy with activities that give energy will also help you to avoid peaks in your symptoms.
How to Increase Your Energy LevelsBack to top
There are activities you can do that give energy:
Resting, which includes sitting quietly, laying down for a bit, or taking a “power nap”
Time-limited resting is an important way to renew your energy. Resting can help your muscles feel stronger and prepare you to take on bigger activities when needed. Tips for incorporating rest throughout your day:
Rest before becoming fatigued.
Take short, but frequent rests
Resting can include Relaxation techniques or taking a short walk
Experiment with duration, timing, and frequency of your rests
Meditating or practicing other mindfulness techniques, visit Relaxation to learn more.
Simplify. Many people, including those living with sickle cell disease, would say that they are too busy and too tired. Simplifying your life becomes even more important when you live with sickle cell disease because you may tire more easily and need to manage your energy. It can be harder to "push through" any fatigue to get things done. Here are some tips for "simplifying" so that you make the most out of the energy that you do have:
Set your priorities: Decide what does and does not matter to you. Things that are not important can either be put off to a later time or dropped altogether.
Delegate tasks: Figure out which things you could ask someone else to help with or take over for you.
Eliminate tasks: See if you can find ways of doing things that eliminate tasks that drain your energy. For example, let your dishes drip-dry instead of drying them by hand, consider shopping online so you don’t have to go to the store, or take clothes out of the dryer right away so that you don’t have to iron them later.
Pacing. Continue reading below to learn more about pacing.
What is Pacing?Back to top
You may have experienced a time when you did too much because you felt well and then “paid for it” later. It can be easy to get into a cycle where you overdo it and then feel worse or are not able to do what you had planned. Overexerting yourself can cause an increase in pain and other symptoms, which is the term that is used to describe a brief increase in symptoms such as feeling pain, feeling tired or weak, becoming emotionally or mentally exhausted, thinking less clearly, or having trouble getting good sleep.
People with sickle cell disease may find it easy to fall into this cycle because tasks that used to be quick and easy, such as household chores, may now take longer to complete. This can make it hard to accomplish everything that you need to do each day. As a result, you may feel the need to make up for bad days by playing catch-up on good days.
When you get caught up in this cycle, you may:
- Feel well and do too much
- Have a flare in your symptoms
- Fall behind in tasks or miss out on things you enjoy while you rest and recover
- Repeat the cycle when you feel well again
Learning how to pace yourself can help you break this cycle by teaching you how to alternate between periods of activity and rest so you can do more with less risk of symptom flare-ups.
Pacing may help you:
- Continue to take part in many of the activities you enjoy doing
- Increase your productivity in the long run, rather than reduce it
- Avoid extremes in pain, fatigue, tension, stress, or anxious or depressed mood
- Maintain a more stable level of activity
- Experience fewer and shorter symptom flares
There are two main types of pacing:
Goal-Based Pacing: Identify an activity that you want to do or a goal that you want to achieve. Then, figure out how to break the activity up into reasonable steps; once you complete each step in the task, regardless of how long it takes, take a break to rest. After the break, begin the next step toward achieving the goal. To figure out what may be realistic for you to start out with, you might keep a diary to track what your current activity pattern is like and will give you a sense of a good place to start. You may also get feedback from a trusted friend, family member, or health care provider about what may be realistic for you to do. Then, work at improving your endurance bit by bit until you can do more between rest breaks.
Time-Based Pacing: Time-based pacing allows you to be active for a set amount of time, which could be minutes or hours, depending on your personal needs. Certain tasks may take more effort and take longer to do than others. Only you can determine which is the best pace for each task you do. You could try this by following a time-based rhythm of activity and rest to complete a task using the following three steps:
Do the task for a safe set amount of time, even though you may have symptoms.
Rest for a set amount of time, even if you are not tired or finished with the task. Make sure the rest is long enough so that you will not experience a flare up later.
Repeat steps 1 and 2 until the task is done.
Make a Personal Pacing PlanBack to top
To create a personal pacing plan, try following the following 6 steps discussed below:
STEP 1: Choose a task.
You can use time-based pacing for any task you choose, such as household chores, yard work, personal care, shopping, and pleasant activities. To start, pick something you want or need to do. Start with a simple task, such as vacuuming one room, before trying something harder, such as cleaning the whole house.
STEP 2: Find your pacing rhythm.
To find your pacing rhythm, do the following:
- Estimate how long you can do a task safely before risking a symptom flare.
- See how long your body needs to rest after this period of activity.
Remember, during your rest period, you should not be recovering from a symptom flare. You are recovering from a safe amount of activity. Everyone is different, but you may need only a brief rest period to allow your body enough time to restore itself before you can continue the activity. Your rhythm for each task will depend on how hard the task is and how much you are able to do right now. It may take you a little while to figure out the right rhythm, so don’t be discouraged if you don’t get it right the first time. Keep these ideas in mind:
- Pick simple goals that you can meet on good and bad days. For example, if you can get out of bed for only 10 minutes at a time, you might want to try a 5-minute activity and then rest for 15 minutes.
- Divide your activity and rest segments into small, manageable portions spread across the day. For example, do three 5-minute walks a day 3 times a week rather than one 45-minute walk once a week.
- Ask your healthcare provider or try the Pacing Yourself worksheet to determine realistic pacing goals.
STEP 3: Share your pacing plan.
You can share your pacing plan with others like a friend, a family member, and a doctor so they can better understand your symptoms. A doctor may be able to offer additional support and ways to adjust your plan so that it works best for you. Visit Communication Skills and Talking to Your Doctor to learn more.
STEP 4: Try your pacing plan.
Try your pacing plan for 3 to 4 days. This should give you enough time to find out how well it works for you.
Example: Shop for 15 minutes and stop. Rest for a set amount of time. Repeat the cycle until you’re done
- Stop and rest even if you are not tired or not done shopping.
- Rest in a pharmacy area chair, the furniture department, in a dressing room, or at the front of a grocery store Work on your computer for 20 minutes and stop. Rest for a set amount of time. Repeat the cycle until you’re done.
- Stop and rest even if you are not tired or not done with your work.
- Get up and walk, stretch, or use one a Relaxation technique.
STEP 5: Review and revise your pacing plan.
After you have tried your pacing plan for 3 to 4 days, review how you are doing. If you can do your task and still feel okay that day and the next day, consider revising your plan and adding time to your activity. To revise your plan:
- Slightly increase the time you are active, and gradually reduce your rest time. Be sure to talk with your healthcare provider any time you are planning to increase your activity.
- Try this new plan for another 3 to 4 days to give your body time to adjust.
- Use the Pacing Yourself worksheet to track your progress. While practicing and reviewing your plan, you may start to feel worse, or you may experience a symptom flare. Remember, pain and other symptoms can happen from time to time, no matter what you do. But don’t let this discourage you, and don’t stop your activity. Instead, reduce your activity intensity, but continue for the same amount of time so you can keep the gains you have already made. For example, if you have been walking at a moderately fast pace for 15 minutes, slow down and walk at a slower pace for 15 minutes. Then very slowly work back to your first goal so your body has time to adjust.
STEP 6: Continue to practice and revise your plan.
Keep practicing and revising your pacing plan until it works for you. To start, you may want to just try doing pacing plans for 2 tasks a day. With patience, time, and practice, you may be able to find pacing plans that help you avoid the cycle of overdoing it, so you are able to do more of what you want and need to do.
Avoid "Danger Times"Back to top
Many people tend to overdo it and exceed their limitations during certain danger times. Here are some common examples of danger times:
Days when you feel good. Good days occur when you are feeling good, and your symptoms are less severe. Be careful that you don’t turn a good day into a bad day by overdoing it in your physical activities.
When doing some physical activity that you enjoy. Enjoyable physical activities are wonderful ways to focus your attention on something other than your symptoms. Unfortunately, they can also divert your attention from using good pacing techniques. Be careful that you don’t become so engrossed in an enjoyable activity that you forget to pace yourself.
When competing with other people. Competition is a great motivator, but it can also get you into trouble. Don’t let competition trick you into exceeding your physical limitations.
When trying to please other people. It is nice to please others, but don’t let pleasing others get in the way of living within your limits.
When feeling rushed, pressured, or emotionally upset. These are times when you can become careless and forget to use good judgment while doing physical activities.