Patient 5: Carolyn's story

The Pain Practitioner told me about the idea of a ‘recipe’ of different things that work together to reduce the pain.

I am not the greatest cook but I know that even the best meal without its seasoning is less than it should be. Since that time I have worked with this recipe model and I understand a lot more about the different ingredients and how to use them, change them around and think about introducing new ingredients from time to time. I am not pain free but I have pain reduction and I feel in control most of the time. I know that there is not ‘one’ ingredient that works on its own but a combination of techniques, medication and lifestyle changes that add up to management of the pain. I now understand that I can be in control and even if I am not pain free there are a lot of things to adjust that can add up to a better life for me.

Coping with activity and exercise – experience of pacing, advantages of exercise, difficulties and how you overcome them

When I had been taking all of the different medication prescribed for me and rested as advised I put on a lot of weight, the pain was getting worse and I was afraid of hurting myself further by exercising. This was my lowest point of all and I felt that I had no control over my life or the pain. I decided to put myself on a sensible eating regime; paid attention to sensible footwear [some particularly nice shoes out there and I do like shoes!].  I started to exercise little more – simple things like taking things upstairs at home in lighter loads and more journeys however slow – every little helped and with weight loss and more exercise the pain reduced. I have found a really good type of exercise in the ‘toning tables’ – you are well supported in the exercise, you can put in more effort as you get fitter and it really improves your core strength. I have seen people who used to be in wheel chairs and on crutches really get great results. I have to do the exercise between 3 and 5 times a week – it works for me. I also find it is a good wind down activity after a stressful day at work. The exercise causes some pain but I have learnt that I am not making the injury worse.

I sometimes get over ambitious and walk too far or decide to do a stint of gardening [lying on the grass weeding!] and of course I pay for it – I am not sure, if I am honest, that I will ever stop overdoing it because I get fed up with my limitations. When I am in a lot of pain because I have done too much or something silly I am unrepentant because I enjoyed the task – my choice my extra pain! It drives my husband mad!

I belong to a weekly keep fit class [KFA a national association] in the village that is full of women 50+. I am not able to do a lot of the exercises but the instructor adapts the schedule for me to do seated exercise. The group are so funny and there are a number of us with mobility issues but the group make me laugh so much and I think that is so therapeutic – I call us ‘jam and Jerusalem in pumps’. Surrounding myself with a group who have fun is important – the instructor focuses on what I can do not what I can’t.

How you use tablets and your views on how helpful/unhelpful these are

I have been prescribed many types of medication and I was not happy about medication as it felt like I had failed and was giving in to the pain. I also found that for every advantage in terms of pain relief there was a side effect [e.g. stomach upset, constipation] that required further medication – the old woman who swallowed a fly seemed to end up swallowing a horse!. I learnt about the different types of medication and I understand how they work and when it is helpful to take them. I manage my medication and decide when to use it – a palette of partial answers and emergency solutions if the pain is too much. I have shifted my thinking about medication and now see it as a positive ingredient to use in the ‘pain management recipe’ when I feel I need it.

In relation to every area of my pain and its implications. I started with the history of the injury and described the impact on my life. I put some information into tables. I looked at the different medication I had been prescribed and wrote down the positive and negative aspects of the medication, when I used it and what impact it had. I wrote tables about aids and adaptations that helped me and the situation in which I used them. I looked at the adjustments I had made such as changing to an automatic car, having an occupation health assessment at work that provided a specialist chair [changed my working life!] and how people could assist me in continuing at work and managing at home. I wrote about different crises that I had and how they made me feel, how long they lasted and the impact on work and home. Apart from the cathartic process of writing all of this down it has been a regularly updated document that I have used to explain my situation to new managers, public officials [applying for a blue badge] and for hospital appointments. I don’t like explaining my condition and what I can and cannot do to people – the ‘history and regular update’ of my pain and mobility condition saves me an awful lot of explanation. I have also been able to look back at old copies of the ‘update’ and have been able to see my progress.

Tips on getting a good night’s sleep

I make sure I have the right amount of sleep – too much time lying down is counterproductive and too little sleep leaves me frazzled. I have stopped watching TV in bed. I read something about how TV is not a relaxing activity. I gave it a try and listened to the radio, read a book and also did some of the relaxation techniques I learn on the on line pain management course. When I did the course I was not convinced about some of the relaxation, however I have learnt to give things a try and have been really surprised at the results. I have also used the relaxation techniques during the working day, especially if the work environment is frantic – a few moments in a meeting relaxing have helped with the pain.