Living with persistent pain can have an impact on many aspects of people’s lives including the activities you need to do, have to do and want to do. It might also mean that most of your resources are used in doing what you have to do with not much left over for the things that you enjoy.
As well as a physical impact, living with persistent pain can impact on our mood, our sense of who we are, relationships with others and our social life. You may feel that all of this is affecting what is important to you, the choices you are able to make or the type of person you want to be; in other words, your values.
This can lead to a variety of emotional responses, which might include frustration, shame, and a sense of loss or sadness amongst others.
How we are able to engage in activities is central to managing these different factors and can play a part in how our brain and central nervous system responds in persistent pain.
Activity management can help with keeping active whilst reducing the potential for pain flare ups. It can also help to find balance in your day to day routines and activities, and help you to increase your activity levels in a way that feels manageable. This can all have a beneficial effect on your health and wellbeing in many areas; physically, emotionally and socially and ultimately the overall experience of pain.
People can respond in different ways to living with pain and how they go about their day to day activities.
For some it may lead to an activity cycle where there is a tendency to get as much done as possible in one go; however you may have experienced first-hand that pushing yourself too far can lead to increased pain and tiredness and needing increased periods of rest and recovery. You may find yourself trying to make up for this by over doing activity again next time.
This is also known as “boom and bust”. There are many, very understandable, reasons someone may find themselves in this cycle; for example; frustration, feeling guilty/not wanting to ask for help, it feels better to get the job done and so on. It can also be very difficult to change the habits we have developed over a lifetime.
The difficulty is that after a while, it can take less time for the pain to reach a level where you need to stop an activity. This may lead to more frustration and feelings of being less in control.
Alternatively some people may find themselves doing less over time to try to avoid pain during activities. This can lead to increased pain and stiffness and reduced stamina in activities. It may also affect mood or lead to feeling more isolated; for example from family, friends and social activities.
The common feature for both of these scenarios, is that pain is the controlling factor and the brain learns to associate more pain with less activity as time goes on. (Even the thought or memory of certain activities might trigger pain.)
“The Window of Tolerance” and establishing a baseline:
One area to consider is “the window of tolerance”. This means working out the maximum and minimum length of time you can comfortably do a certain activity for and establishing your baseline for different activities.
To establish a baseline, you may find it helpful to record how long you can comfortably do a particular activity for, and do this on a few different occasions (including days when your pain is better and worse) to give you a realistic guide for this. You can then work out the average amount of time you can do a particular activity for without causing a flare up of pain. Try to then keep within this time frame when doing that activity. This helps you to establish a baseline to work from and build on (also known as your “window of tolerance”) It may be helpful to start off at a level which feels easy, so perhaps reduce the time frame you have calculated a little at the beginning.
As this starts to feel more manageable you can gradually increase the amount of time you do this activity for. The aim is to gradually increase your activity levels in a manageable way.
It can initially feel frustrating to keep your activity levels within these limits, especially on a good day, however hopefully over time the amount you are able to do comfortably will gradually increase. If you have found that you are avoiding activities because of pain, this method may help you start to revisit these activities in a manageable way.
Working within your window of tolerance doesn’t always mean completely stopping in between activities. For example you might do something that is more demanding for a manageable period of time, followed by something that is less demanding, perhaps interspersed with more relaxing/self-care activities.
(Activity demands might not only refer to how physically demanding something is, but also how mentally or emotionally demanding it is).
Remembering to practise self-care activities on a daily basis is important, as is including activities you want to do as well as those that you have to do in your daily/weekly routine.
Alongside working within your window of tolerance and considering activity balance, it can also help to think about how you plan and prioritise things.
It is tempting, and understandable, to focus all your resources on those things you feel you “should” do with little left over for other things which are important to you; try to think about how you might include space for these in your routine, including those which are enjoyable and relaxing.
Planning activities can help make them more achievable. Some examples to think about might be; considering the type of posture or amount of effort is needed for each activity and working out how you might vary these throughout the day; considering the time of day you complete an activity, or considering when you might have access to support from family or friends.
This is an important part of activity management. Thinking about other ways to do what you want to do can make something feel more realistically achievable. For example; is there an alternative route for an enjoyable walk? Is there an alternative design for a utensil or a piece of equipment or furniture which you use often? Are there some things which you feel comfortable discussing with someone else, such as an employer or family member to help achieve what you want to do?
Activity management can be challenging for the reasons we have already mentioned, and each person will have their own set of circumstances which affect this. It is helpful to acknowledge that there are times when things may not go completely according to plan, and there may be times when you experience setbacks or flare ups of your pain; try to be compassionate to yourself, it’s OK to re-evaluate things and keep trying.