Keeping It Up - Manage Your Pain: Practical and Positive Ways of Adapting to Chronic Pain - Michael K. Nicholas, Allan Molloy, Lee Beeston, Lois Tonkin

Manage Your Pain: Practical and Positive Ways of Adapting to Chronic Pain - Michael K. Nicholas, Allan Molloy, Lee Beeston, Lois Tonkin (2012)

Chapter 20. Keeping It Up

Long-term success with this programme will depend on your ability to continue using the skills and techniques you have learnt.

Follow-up interviews with ex-ADAPT patients have clearly shown that those who have done best in the long-term are the ones who have kept up their pacing, relaxation and fitness exercises, as well as the various coping strategies they learnt at ADAPT. That is not to say it is always easy (of course, it isn’t), but it does show the benefit of continuing to use the skills and approaches learnt on the programme.

Once you’ve succeeded in making changes, and you’re achieving many of your goals, the next question will be how to keep up your progress. When you first started this programme, you will probably have found that family, friends or your doctor provided plenty of support and encouragement. But once you’re on your way, they may not have as much time to help. Alternatively, they may feel you don’t really need that much support any longer. However, you may find it quite hard to keep things going - things like staying off the pain killers, keeping up your exercises and working towards your long-term goals. This is especially true if you have any setbacks or stop your programme for a while due to something like the flu’. Once again, it would seem a good idea to think about these issues and ways of dealing with it before you have to face them.

What problems do you think you might have in maintaining the changes you have made and how could you deal with them?

1) No support or encouragement at home?

Naturally, it can help a great deal if your family or friends are able to reinforce your efforts with support and encouragement. However, this doesn’t always happen. Your family or friends may not help because either they don’t understand your pain problem and don’t know what they can do to help or, for some reason, they are unwilling or unable to help. How could you deal with this?

Discuss it with them. If it seems they don’t understand or don’t know how to help, perhaps you could discuss the programme with them, get them to read this book (or bits of it), or ask them to discuss the programme with you and your doctor.

You will probably need to explain to your friends or family what you are trying to do and tell them exactly how they can help. For example, perhaps they could join in your exercise sessions or you might like them to take over one of your responsibilities while you do your exercises. Sometimes they might help you most by leaving you alone at the times you specify so you can get on with your own activities or exercises. Whatever the case, discussing your plans with them and making it clear what you would like from them will often help to avoid misunderstandings and possible conflict.

Deal with expectations. It is quite likely that your friends or family will have become used to the way you were before you started the programme. As a result they may need time to adjust to the ways in which you have changed. They may just expect you to go back to the way you were before the programme and so act as if nothing has changed - something you might find upsetting after all your efforts. Or they may expect too much of you too soon and not understand that it may still take some time before you are as active as you (and they) would like you to be.

If it seems your family or friends are unwilling or unable to help, it may still help to clarify this with them so that you know where you stand and what to expect from them.

Reinforce yourself. If, for whatever reason, you don’t have anyone to encourage you it is important to do it yourself - as was discussed in the section on making changes. In other words, reinforce yourself for your gains. But, remember not to rely on the same one or two reinforcers all the time - try to add to your list of reinforcers, and use them all. Occasionally, you could even give yourself a really big reinforcer, such as a holiday, a meal in a restaurant or some new clothes - providing, of course, that you achieved your goals first.

2) A tendency to put off doing things or forget?

No doubt you will agree that if you make only vague plans to carry on with the programme (or “just wait and see how it goes”) you probably won’t carry them out. For example, if you say you will try to keep up your exercises every day but don’t work out how, you will probably find yourself putting off doing them.

Make specific plans. You will be much more successful if you can make some specific plans about how and when you are going to do your activities and exercises. For example, you could decide to do your exercises at a set time each day. By doing your exercises at a specific time and place, such as in front of the TV news at 6pm, you will find that after a week or two it has become as much a habit as cleaning your teeth before bed at night (or whenever you clean them). Similarly, if one of your goals is to attend something like an adult education class you could easily keep putting-off finding out when it started. Making a specific plan to do it on a set day (and even writing this down in your diary or on a kitchen notice board) will help you to make sure you do it.

Use reminders. It can often help to use specific reminders to help you remember what you have to do. For example, if you have trouble remembering to relax when you’re sitting in your car, it could help to place a sticky label on the steering wheel where you’ll catch sight of it. Similarly, if you have trouble remembering how to use the vacuum cleaner properly (with the best posture), placing a label on the vacuum cleaner could remind you each time you go to use it.

On the other hand, you can simply try to get into the habit of associating a particular activity with a certain time or place. You can do this by performing the activity as often as possible at that time or place. For example, doing your exercises at the same time or place each day, or checking your posture each time you sit down (before doing anything else).

It can also help to reinforce yourself each time you remember to carry out your plans - it will make it easier to remember next time.

3) Other demands on your time?

It is quite likely that from time to time you will find you have to put your plans aside in order to deal with other demands on your time - things like requests from friends or family members to help them with something, or perhaps you may take a holiday or even get the flu’. At these times it may be quite impossible to keep up your exercises or working on some planned activity. This sort of temporary interruption shouldn’t be a problem - when the interruption is over you should be able to get back to your own plans (though you may have to restart your exercises and some other activities at levels below what they were when you stopped).

However, if you find the other demands on your time seem to be going on too long you may need to re-think things. For example, you may need to sort out your priorities - what is more important to you: to leave things the way they are and to forget your exercises and goals, or to stop what you’re doing and get back to your exercises and working towards your goals? If you don’t want to give up either, then you will have to make some sort of compromise and find a middle way which allows you to do some of both.

Sometimes the issue may involve your friends or family and you may find it difficult to discuss the matter with them. If so, it may be worth spending a little time thinking about a good way to go about it. Reading a book on communication skills could help here. Of course, you might also like to discuss this issue with your doctor or clinical psychologist, or other health care provider.

Whatever you decide it is most important that you don’t let things drift too long - the longer you leave your exercises and goals the harder it will be to get back to them.

Some points about the programme to keep in mind

1) Keep active - in as many areas of your daily life as possible. Especially in household chores, leisure or hobbies, family/social activities, exercise, work (paid or unpaid).

Remember: - use pacing and plan your days as much as possible to get a good balance of activity through the day and the week (try to avoid loading all your activities onto one part of the day or one day in the week and try to vary your activities - not too much sitting or standing at once).

2) Things to Avoid

Too much resting.

Relying on drugs (including alcohol) to help you cope.

Thinking in negative, unrealistic and unhelpful ways.

Thinking in unrealistically positive ways.

Focussing on how much the pain hurts.

Talking about the pain.

3) Deal with set-backs or lapses - (and learn from them).
These are bound to happen at times. Learn from the ways you dealt with the last one and work out what you can do better next time. Read Chapter 18 (on dealing with set-backs and increased pain). Most importantly, don’t let things just drift - do something about it!

4) Take the credit for your achievements. Only you know how difficult it is to live with pain. Others can help a bit, but in the end it is up to you. By taking the credit for your achievements you will improve your confidence in yourself and in your ability to cope with pain.

5) Encouragement from others. Family and friends can help in many ways. In particular they should:

· Acknowledge and praise your efforts and achievements (even if you are not always successful - who is?);

· Avoid asking about the pain (you can tell them when necessary);

· Avoid urging you on or pushing you to do things (it’s up to you to do decide what you are going to do);

· Avoid doing things for you because of your pain (unless you ask first).

6) Working with your doctor.

Have another look at Chapter 5 on Working With Your Doctor. You shouldn’t need to see him/her very often about your pain, but every now and then it can be helpful to let him/her know how you are managing. We recommend that you stay with one doctor as long as possible, as that will help your doctor to keep a consistent approach to managing your pain. You can also seek advice from your doctor from time to time if you hear about a “new” treatment or “breakthrough” for pain.

Final Check

Go back to the Introduction and have another look at how you would score yourself now on the Pain Management Strategies Checklist.

On items 1 and 2 if you score 3 or more you are doing quite well - give yourself some reinforcement (if less than 3, you still have some work to do).

On items 3 to 17, if you don’t score any 2’s, 3’s or 4’s you probably don’t need to read this book again - for the time being. Give yourself another reinforcer.

If you still score 2, 3 or 4 on any of these items you should discuss it with your doctor. It might also help if you discussed it with a clinical psychologist or a physiotherapist with experience and training in cognitive-behavioural treatments. You should also consider asking to be referred to a multidisciplinary pain clinic or pain centre.