A personal account of living with chronic pain by Kathleen Hesketh
Introduction I am offering this personal glimpse into some methods of managing and living with chronic pain. I have no medical background, but I have had chronic pain as my constant companion for many years, and I thought I would like to share with others ways that have helped me to cope and carry on with life. There are many stages towards fully accepting pain and if you find these ideas are not right for you at this time, then perhaps revisit them at a future date and then they may seem more interesting and useful. I hope that someone, somewhere, and at some time, will find something here to help them to make their life a little easier. CONTENTS Who am I now? Acceptance and love Changes Control Distraction Other people The wider world Relaxation and fun Imagination Page 1
Who am I now? It is very important to get to know yourself in a realistic way, take stock of your physical abilities and mental strengths and be totally honest with yourself. Make lists of what you can actually achieve and what tasks are now beyond you no matter how simple, complex or basic they may be. Become your own objective assessor. Only after this somewhat harrowing exercise can you begin to accept your body as it is now. This is what you are living and working with. It is easy to recall how things used to be and imagine how you would like them to be, but stick to the present moment in time and the truth of your condition as it really is. Accept this new self. Living with chronic pain presents a whole new set of challenges and a totally different lifestyle than before. Understanding your body will allow you to deal effectively with your new situation, its restrictions and emerging opportunities. My pain is constant whether I am at rest or active. This gives me two options. I can remain at home, in pain, or go out into the community and be in pain. Whenever possible I choose the second option; I value contact with other people even if it is only as a bystander, and I am exercising my body and mind at the same time. Page 2
Acceptance and Love Now is the time to fully accept your body and ability. Learn how to love it as it really is. Do not allow yourself to keep thinking back to how things used to be as this will bring you nothing but grief and resentment. It is too easy to get stuck with the thought 'why me' and gradually build up anger. Be proud of your body and look forward to exploring what you can achieve. There is nothing to apologise for and saying you are sorry just because you cannot keep up with others. If pain prevents a particular movement just be kind to yourself, and take joy from what you can do and be grateful. You are not as alone with your pain as you feel. There are thousands of other people experiencing similar restrictions as you are, so do not feel sorry for yourself. No one has singled you out to endure the suffering. You are not being punished for anything that you may have done before. Stop blaming your body for its inadequacy, have patience, love and encourage yourself to move forward. Some people have a need to see positive improvement in their condition and find setting themselves targets and ambitions helpful. For myself I prefer not to put my body under the pressure of having to achieve or face constant failure. I love my body and I have the confidence to know that I am doing my best. If this leads to success in a task, then great. If this leads to failure, then it is still great, because I accept that my body has performed as well as it is able. This, I believe, brings acceptance, harmony and peace. Page 3
Changes Fully acknowledge the pain, and accept it as part of your life from now onwards. This does not mean you have 'given in', but just the opposite as you are now recognising a simple reality. By being kind to yourself with thoughts and actions, you will begin to find life easier and less stressful. Take the time to analyse your condition, and see if anything aggravates your pain, and work out why at times it seems easier. Decide how you can make small changes in your lifestyle to accommodate new ways of making it less painful. Only you can do this as we are all unique and special, and no one knows your body as well as you do. Being in constant pain seems to drain our energy somewhat, and with a limited supply of energy I think we must be more careful how to use it. Do not be tempted to waste energy and time seeking a 'magic cure'. It will not be found because it does not exist at the moment. While you search in vain you are not helping your body to cope with the reality, you are just feeding it false hopes. Medical research will come up with the answer in time, but that is not today, and it is today we are dealing with. Page 4
Control Once you fully acknowledge this pain belongs to you, realise that you have the power to manage it. You cannot rely on other people to be as involved in managing your pain as you are because, although they may be concerned, sorry or upset for you, they are not experiencing it and it is not their personal problem. So do not expect them to come up with all the answers. Take control of your body as there is a great deal you can do to help yourself. Life always seems better on a sunny day and your life will feel better if you learn to adopt a positive attitude towards it. This is not always easy and may take some practise to acquire this skill but it is well worth your while. Keep a positive attitude towards everything and put the effort into becoming cheerful and positive. I think that we all talk to ourselves a great deal and we are told that every cell hears and believes what we say. Constantly being negative, and saying things like I can t stand this pain will only lead to you making no progress, as your body will believe this message and keep you in a distressed condition. Instead, keep your thoughts and words positive and your whole body will become calmer, and in a much better place to cope with your difficulties. In other words, take control, do not flounder in the negativity and gloom but by constantly telling yourself you can cope your body will respond positively and you will make progress. You can gradually eliminate the struggle with the pain because you have accepted its presence and taken control of its effects. This does not mean that you will not have days which are bad. On such days, think back and see if you are able to think of a possible cause, but take your medication and resume control. Instead of fighting against pain, learn to work with it. Take up the challenge. You will not be able to eliminate it and win the war, but you will be in control of your body and actions and have the satisfaction of winning many, many battles along the way. Page 5
Distraction If you spend time focusing on the pain and how bad it is, it will gradually take over your thoughts and seem to be a lot worse. Learn to acknowledge that the pain is there, and then get on with what you want to be doing, taking regard of it but not allowing it to dictate. Remember: you are in control. Many shops have piped music throughout the store. This is at a low level and is aimed at providing a background noise which will not interfere with your spending. When you learn how to manage your pain, this will take on a similar role. It will always be there, but you have managed to relegate it into the background, and are not allowing it to be the main focus of your attention. One good simple way of achieving this is by distraction. If the brain is given something to keep it busy it cannot focus solely on the pain, and it then takes a role of less importance. Ways of distracting yourself are as many and varied as every individual, but they do not have to be complicated. Even reading a newspaper or doing the 'puzzle page' will cause a distraction. You may find you can no longer do the hobbies you once enjoyed. So, rejoice in your past achievements and be thankful for past successes. Now is the time to focus on your new situation. Many previous pursuits can be modified and you also have the joy of learning and developing new interests and hobbies. None of this will happen of course without you making a huge effort. Do not be tempted to use your pain as an excuse for not being able to follow new hobbies and interests. Try not to let your pain get the upper hand. It is only part of your make up and not the most important part either. You have the power to keep it under control. Page 6
Other People When you meet up with friends and relatives do not be surprised when they remark how well you are looking. I know how frustrating this can be. Sometimes you feel like screaming and telling them how much pain you are in. But they cannot see or feel your pain, and cannot always understand your condition. They are trying to treat you normally and they often do not really know what to say to you. As chronic pain is a long term condition, do not get upset when other people gradually forget that you are in pain. You can either accept this as a compliment to the fact that you are coping well, or insist on reminding them and being in danger of becoming a complainer, even if you feel you have justifiable cause. A happy, positive person always makes a more pleasant companion and the company of other people is an excellent distraction for our pain. Do not expect anyone else to be as interested in your condition as you are. This is your body and your pain, and you are the one who must develop a way of successfully living with it. When others do enquire after your health, do not be tempted to lie and say that you "are fine". Answer honestly but concisely with a simple reply, such as "coping nicely" or "finding it a bit of a struggle sometimes", and then move the conversation on to more positive topics. It is our responsibility to help others feel at ease in our company. Having chronic pain puts us into a minority group in society, but it should not make us feel like an oddity or as a second class citizen, or as someone who deserves extra-special consideration. We are slightly different, but of equal value as everyone else. Do not be tempted to overstretch yourself in order to keep up with other people. Be at peace with yourself and your capabilities. Do not feel guilty or inadequate. Just be your confident calm self. Page 7
The Wider World Enjoy other people's achievements without jealousy or ill feeling. Most of us do this without realising it when we watch sport or a craft person working. The fact that we cannot do the same should be no barrier to relishing what can be done by others. Being in pain can remind us strongly of our restrictions and make it harder to accept. We need to keep our lives within the boundaries of our capabilities. If we attempt to overstretch our limits then we will not be able to cope as well and the pain has a chance to become dominant again. Exercise is an important part of everyone's life, ours included. The level at which we take exercise will be dependent on our condition but we can all do something on a regular basis and our pain is not an excuse to avoid exercise. The distraction of exercise will make us feel good. I swim at a laughably poor standard and yet I can exit the pool with the euphoria of having swum the Channel. We can still be useful members of society and help other people. There are numerous ways of doing voluntary work in every town and some are extremely simple, but of great value and importance to others. One example is to become a home visitor to a blind, elderly or housebound person, which can simply involve going for a cup of tea and a chat on a regular basis. Some people will offer to help you by doing jobs that you now find difficult. Accept all offers that come your way. Do not be too proud and refuse help. It is not a weakness to accept help. Allow others to make your life easier and remember they may not understand your condition, but they are recognising it. Do not deny them the satisfaction of helping other people. By a similar token, be prepared to ask for help instead of playing the victim and being stubborn. You will still be in control. There is a dignity that comes from admitting your shortcomings with grace and seeking assistance. Page 8
Relaxation and Fun Relaxation has an important role to play when living with pain. It can offer a brief respite and give us a sense of calm and joy, while making it easier for us to take control. If we can restrict ourselves to worrying only about situations we can do something about, and not about all the global issues which are of concern but should not be our worry, then our bodies are more likely to be calmer. There are numerous ways to consciously relax our bodies with simple breathing exercises through the wide gambit of complementary therapies. Try different methods until you find one that works for you. Do not give up, as the rewards of relaxation are well worth it. I use my imagination a great deal and I have found my own still pool of calm deep within me. This is a place where I can visit in my imagination anytime I feel the need for extra strength and serenity. Never doubt your ability to work with your imagination and pain to achieve a good quality of life. If I know I have a taxing day coming up, then instead of filling myself with a steely determination to get through it, I work with the pain. The day before and day after my busy day, I will spend relaxing, allowing the body time to prepare and recover, working with the pain and not trying to ignore it. We are fortunate to have excellent medical backup for our pain which provides both drugs and support. Make good use of this, but do not abuse it or become lazy because it is there. We must never lose our sense of humour and ability to laugh with others and at ourselves. Actively seek out comedy in all forms and aim for at least one good laugh a day. Look for the humour in every situation. It may be subtle, or obvious, or obscure, but it will be there. Seek it out, have a chuckle and enjoy it to the full. Try doing one job at a time. This will help to keep you stress free and relaxed, allowing you to concentrate on controlling the pain and succeeding Page 9
Imagination If you enjoy a challenge and a bit of fun with your imagination, then read on. Let us have a good look at this pain from the inside using our imagination. Find a part of your body which is full of pain at the moment and venture to that site in your mind and meet the pain. What colour is it? What shape is it? What size is it? Is it stationary or wobbly? Is it just a mass or does it have a character? There are no wrong answers. Amazing ones perhaps, but all correct as this is your own personal pain. You can now imagine it, give it some definition. Something for you to work with. Get a piece of paper and make a drawing of it, your own real monster! Now, it is no longer an unknown quantity, but a part of you not to be found in any medical journal, yet real with consequences all the same. Examine your feelings towards this object. What does it invoke? Pity, hatred, understanding, sympathy, humour, disbelief? Get used to this new information, puzzle it out, try and rationalise it. Most of all, enjoy it and see the humour. This exercise can be repeated as often as you wish and each time your pain may appear different. As you gradually learn how to work with the pain and take control, you will be surprised how much the imagined pictures will alter. They will become softer, more gentle, less of a threat and more acceptable. The example on the following page is the result of using this technique. Page 10
Imagination - cont/d I had a particularly bad patch of stubborn pain, and as I looked at it from the inside, using my imagination, I found an object that was the size of a football, scarlet in colour and spiky, giving off waves of negative energy, and taking its anger out on my body. I was a little disturbed by the strength of the emotion that this brought to the surface, but I felt I was dealing with a hurt animal and that I needed to help it. Every day, I thought about this ball and sent unconditional love to it and, after a week, I repeated the series of questions. The mass was still there but now it was the size of a ping pong ball. The surface was smooth and it was a beautiful pale pink colour. I was elated, the pain was under control again, and I felt my body had appreciated my concern and actions. This had been a fun but useful thing to do. I realise that after a week my pain may have been a little more subdued than if I had done nothing. Yet I felt I was in control and actively doing something about it rather than sitting waiting, doing nothing. I now have a method of communicating with my pain, which will make controlling and negotiating with it much easier. This may be something of an unusual approach, but it works for me. Love and laugh, pain or no pain, and may fellow sufferers find joy, fun, and serenity in their lives as I have in mine. Page 11