Chronic Illness Pacing – What Is It?
For anyone with chronic fatigue syndrome, fibromyalgia or any other chronic illness which leaves you with fatigue as a major symptom, managing your available energy can be both difficult and frustrating.
In the early stages of your illness you may not even be aware of the need to do this. Consumed as you are with just getting through each day dealing with your symptoms of exhaustion, pain, foggy thinking and the myriad of other symptoms your illness leaves you with.
However, there are many examples chronic illness pacing done correctly can help you manage your illness. Firstly, you need to understand that working within the energy limits imposed by your illness rather than trying to fight against it will produce the best results.
It is difficult to accept, particularly in the early stages of your illness, that you are no longer able to do all of the things you used to do in the way you used to do them. And this mindset needs to be overcome as quickly as possible if you want to see results and gain some relief from your symptoms and possible improvement in your illness.
A study shows that practising pacing over time can result in less fatigue with fewer crashes and a decrease in symptoms. It also shows that by maintaining energy levels you may be able to expand your energy envelope and increase your tolerance for activity. This of course means you will be able to do more as time progresses.
In short, pacing is a rehabilitation management system for chronic illness, in particular for chronic fatigue syndrome/ME. But, it can be applied to other forms of chronic illness where fatigue is a major symptom. It allows you to self monitor and regulate the available energy your body produces and stay within your energy envelope.
Using Pacing To Manage Your Illness
During the time I was suffering with chronic fatigue syndrome I didn’t know anything about pacing. In my ignorant state I was constantly pushing myself beyond my available energy limits. Crashing again and again, it would take a day or two in bed staring at the walls before I recovered enough energy to get out of bed only to start the whole horrible cycle all over again.
And of course because I didn’t change anything about my lifestyle or the way I was doing things it wouldn’t take long before I was back in bed, energy completely gone and waiting to recover.
Everyone suffering with chronic illness has their own available energy level, so it will take a bit of time for you to work out what yours is.
But it’s obvious, if you end up doing too much you’ll suffer the effects of exertional malaise either the following day or around 48 hours after the time you’ve overdone it. Not only will you experience crashing fatigue but a worsening of your other symptoms too.
Try monitoring your activity for a week or two to establish a base level for your current energy status. Keep a record of your daily activity and when you crash. Understanding your current energy limits is key to both accepting the limits of your illness and moving on with a more positive way to manage it.
7 Examples Of Using Pacing For Energy Management
The art of pacing lies in limiting your activity so that you don’t push outside your energy envelope and wear yourself out. Understanding your baseline energy reserve, stopping any activity before you actually need to and taking frequent rest breaks are all keys to successful pacing.
1.Take Longer To Complete Tasks
Instead of spending several hours on a task like cleaning your house, and using up all of your available energy, pace yourself by slowing down the completion of this activity. Of course, this means it will take longer to finish everything, but you will still end up with a clean house and more importantly, your energy intact.
Think about the ‘Tortoise And The Hare’. You definitely don’t want to be the hare and push beyond your limits by going too fast. You are aiming to be the tortoise. This can be extremely difficult for many of us who’s natural state is that of a hare. Learning to slow down was a tough lesson chronic fatigue syndrome taught me. And even ‘though I’ve recovered I still have to remind myself to slow down at times.
A good way to practise slowing down is choosing to do one main task each day, for example vacuum all floors only in one day, mop floors the next day etc. Or better yet invest in a handy robotic gadget that does this for you. I think a robotic vacuum cleaner is an absolute must have for anyone with chronic illness and fatigue issues. It takes care of this tedious chore and leaves you with energy to expend on other more enjoyable tasks.
2. Break Up Each Task With Frequent Rests
Whatever the task you’ve embarked on whether it’s working on domestic chores, cleaning up your outdoor area or doing some computer work, it is a good idea to plan each task by time spent on it.
Work for 15 or 20 minutes on the task, then take a break for a similar amount of time, 15 or 20 minutes. You can set the timer on your phone to help you manage this. It’s too easy to just keep pushing on with the task and become oblivious to the time passing.
As I write this post I have my phone timer set to remind myself to step away from my computer and do some stretching. I find unless I do this I can sit for several hours engrossed in the subject I’m writing about.
The result is I finish my writing, but I have stiff sore shoulders and neck. Setting an alarm is a great way to set your work time limits. And conveniently most people nowadays have this handy function on their phone.
Also change things up, if you are working on a physical task like cleaning, sit down and give your body a break, have a drink and read or just sit quietly and do some deep breathing.
If you’ve been doing computer work or study give your brain a rest by getting up from your desk and moving around a bit. Do some gentle stretching or lie along a foam roller to help release tight upper back, neck and shoulder muscles from sitting crouched over your computer.
I like to lie along my foam roller with earbuds in listening to a guided meditation, releasing tight shoulders and relaxing my mind……multitasking while doing nothing!
At the end of your rest break check in with your body on how you are feeling. If you feel any fatigue or worsening of your symptoms you may need to take longer to simply rest. But, if you are feeling ok you can carry on with your task.
3. Break Each Job Into Smaller Portions
Most jobs can be broken down into several parts which makes each job more manageable. You don’t always have to complete every job all at once which can be overwhelming when your energy is limited.
For example try doing your ironing by picking out only shirts to iron on one day. Then come back to the job the following day and iron bedlinen. This method is much better than standing at your ironing board ploughing through 2 or 3 hours of ironing. An activity like this has the potential to tire you out for the remainder of the day.
Similarly, laundry doesn’t all have to be collected, sorted, and put into the washer load after load, then all loads dried during one day. Try to split laundry tasks up and carry them out over a few days.
There are some good gadgets to help you get through doing laundry with your energy intact too, so take advantage of them. Using a mobile stool so you can sit down while you move around the laundry room is a good energy saving device. Try to sit down while doing tasks as much as possible, a stool on wheels is good to use while cooking too. You can wheel between the fridge and stove top with ease.
4. Reduce The Length Of Your Daily To Do List
It’s difficult I know, but you’ll need to get used to everything getting done at a slower pace and some things just not getting done at all. Your home may not look as squared away as it once did, but as long as it remains relatively orderly it will still work for you and your family.
It’s definitely good to have a to do list, it helps keep you organized, particularly if brain fog is one of your symptoms. But more than that it gives you a sense of accomplishment as you tick the items off. You feel like you are more in control of your illness, rather than it controlling you.
Just keep the items on your daily to do list short and make the most important items a priority at the top of your list. We could all write to do lists a mile long and keep adding things we feel we ‘should’ do. But with a reduction in your available energy you need to really focus on only having essential items on your to do list.
Prioritize what really must be done as well as the tasks you find more enjoyable and move them to the top of your list. Leave other less important items to be done only if your energy allows for that day.
5. Don’t Overcommit Yourself To Activities
As enjoyable as it can be to catch up with friends and family, sometimes your current energy levels just won’t allow for it. Remember that it is not only physical activity that drains your energy. For many, emotional and mental interaction with others can be really draining too, even if you really love the company you are in.
When I was sick I found I could deal with a short one on one catch up with a friend but socializing on a larger scale was extremely energy sapping for me and would take a day or two to recover from no matter how enjoyable it was at the time.
Keep social activities whether they are with friends, family or any work you are doing to a manageable level. Turning down an invitation from a friend is less disappointing for them than calling off at the last minute due to being too fatigued to attend.
Be selective about which invitations you accept and only join in the activities you know you will enjoy. Put any sense of duty to attend you may feel on the back burner for now.
Also let others know when you’re done and need to leave. Do not ignore the signs your body is giving you when you start to feel fatigue creeping up or you’ll pay for it the next day.
It’s better to enjoy a shorter time with friends and family than no time at all due to being in a constant state of fatigue and possibly bedbound.
Understanding and acknowledging what your fatigue triggers are whether physical, mental or emotional will help you meet your pacing goals by allowing you to stay within your energy envelope.
6. Remember To Pace Even On The Good Days
There will be some days that are better than others, days when you feel good and even quite energetic. And these are the days when you need to remind yourself to keep up the practise of pacing. An improvement in your energy level can cause you to forget your illness and push yourself too hard.
Schedule one of the tasks you find more draining or less enjoyable on days when you have more energy but be mindful not to overdo it.
Even on your good energy days, remember to set timers for your activities and take frequent rest breaks. Continuing with your pacing when you feel good can help prevent the vicious cycle of frequent crashing followed by prolonged rest time for recovery.
7. Use A Digital Tracker
Most people buy a digital tracker such as a Fitbit to make sure they achieve their minimum steps and fitness goals each day.
However, it can be a very useful gadget for someone with chronic fatigue syndrome. Not only can it help you understand your sleep patterns, it is an easy way to monitor your activity and help prevent you doing too much. So, in effect you are using your tracker in reverse of how most people use it.
It is also a useful gadget in helping you understand your baseline energy level. Once you have worked out your base line you can set the tracker to monitor your daily allowance of steps. You can then set an alert to remind you when you have reached the maximum number of steps.
If you’ve reached your maximum number of steps and hear the alert, you will know it is time to slow down for the day and take more rest to ensure you aren’t setting yourself up for a crash.
Putting It All Together
Learning the concept of pacing, understanding your own personal baseline energy level and monitoring your activity are tools to help you manage your chronic illness.
Pacing can be a helpful rehabilitation aid in maintaining energy levels, preventing crashes and worsening the symptoms of chronic illness.
Please let us know some of the ways you successfully use pacing by leaving a comment below.