You’ve basically exhausted the medical profession. You’ve been to (a), (b) and (c). None of it’s worked, and then when I went over to the Pain Management Clinic I felt almost like an old horse that was being farmed out to pastures, you know, we can’t do anything with you so well put you into this, this programme because theres nothing else we can do.

So I think the Pain Management Programme had an awful lot to live up to because everyone that was on the programme had had many years of pain and a lot of people had surgical intervention and they were pretty hacked off by the whole thing. So you go in and you’re expecting these people to do something that none of the other professions had managed, professionals had managed to do to-date, so in many ways they got a really pretty hacked off bunch of individuals to work with and in hindsight you know again that’s not very nice place for them to be because I think we were all very disillusioned and we were all at the end of our tether.

But sometimes going back to the basics you know, made a difference. Just getting you to talk through things sensibly but it was time. You know, you had a full morning and you went for several weeks and it was almost like this was a time set aside that you could say ‘Yes, I suffer pain’ and you could actually say it without feeling embarrassed, without feeling you have to hide it, without feeling you have to put on a brave face.

There were several times you know I had to go to the loo just to choke back the tears because it was almost like here are people accepting and believing that I’ve got pain and ‘Oh look that person’s saying something similar to me. So you didn’t feel this oddball and we were a real spectrum of personalities. You know some real characters all with this common theme and you knew they wanted to get on with their life but you know, it was being, it had been hard to find the time to talk, the time to share. It was quite important.

I was referred to a pain psychologist as a part, I think probably support side of coping with the pain. I think, my GP, I think actually it was a consultant under the pelvic pain, but I went to see a pain psychologist and it really, I think it really helped me.

We went through different things that we had to, we did a diary, when I was at uni and a different environment, where we had to, I kept a diary on a daily basis. Everything that I did had a scale of say one to ten or one to five and what those things, you know, let’s say walking down the street and I put five or whatever and what I did and what things made me worse, in what ways they made me worse and then I’d go back to my meeting, which was once a week, with the pain psychologist and wed go through the diary and shed say ‘How, when you did get to that level, how did you get through to cope?. So, if it was on a scale of one to five. How did you cope when it was level five? What did you do? And then she would suggest such things that may enhance what you did, like breathing through, breathing techniques.

One thing that she did actually was explained how pain is interpreted by the brain, so they use a, one thing that sticks in my mind, they used the simple terminology of a pain gate in the lower back that opens and closes according to your psychological interpretation of pain I think. And what opens that pain gate, so if you’re feeling more emotional, you’re feeling less able to cope on a certain day then, for example, that may open the pain gate so the pain may seem worse. Which I don’t want to sound like it’s kind of all psychological ‘cos some people might interpret it that way.

But sometimes pain can be interpreted worse because you feel bad and some people, you know, and that can be intimidating for some people I think, because if you feel that your pain’s made worse by your emotions and things, sometimes you worry that people think you’re do lally rather than there being something actually wrong. But there is the terminology, that this is what the pain psychologist explained and how, you know, these sort of things may affect it and what you can do to counteract those

You know, for example, if you’re walking down the street if you feel that you’re at level five, and you’re feeling particularly emotional, you’re feeling down, then your pain gate is going to make it a level five, whereas it may be, if you breathe a little deeper, rather than short breaths because you’re feeling anxious. So, if you breathe deeper, you know, enabling oxygen to move round your body better, letting your body relax further, then maybe the pain level might be a level three.

So, you know, it’s not necessarily just the psychological interpretation but it’s how that psychology affects how your body works and breathings probably the best example of that, ‘cos it does obviously affect how your muscles work, not obviously, but it does affect how your muscles relax.

Each fortnight or month, whenever it was I was to go. When we first went, she explained the pain chart was for different levels of the pain, different feelings in the pain. So they first asked ‘Where do you feel your pain?’ It was located right through my wrists. ‘What does it feel like?’ It feels like I’m being crucified through my wrists.

The pain is like a gnawing toothache constantly. You have a really bad abscess toothache, it really keeps you awake and you can’t concentrate. That’s the sort of pain. It’s just directly through the wrist. ‘Does the pain bore into you? Does the pain eat away at you inside? Does it make you feel really blur sickly?’ Yes, not nauseous, but it makes you feel unwell, tired. ‘How much tiredness does your pain cause you through trying to concentrate on other things apart from your pain?’

And so the pain chart itself registered how intense the pain became doing certain things, how much it would hurt during the night in your bed, was it getting alleviated, were you getting to sleep now, things like that. Each question each week, or each fortnight, would be the same. Every time you were asked a question you could understand it each week better.

So you would know that the boring pain was a pain you felt all the time, the gnawing, sharp pain was the pain you felt when you’d done too much. So you’d begin to understand ‘Ah I see, I’m doing too much so, if I stop doing so much picking up toys all the time, stuff like that, if I just now kick them to the side instead of picking things up and just stop doing repetitive things all the time, I would get rid of that boring, gnawing pain. So that would alleviate it.

So each time I went in I would say ‘Yes, I’ve done that’, I’d say to them maybe ‘This week has been really sore, because I’ve had to use my hands more for something. ‘Oh right, well how can we alleviate that. Let’s go through the pain charts. So they would go through it and they would see that it was intensified at night-time. ‘Oh right, so what’s intensifying it through the night. Is it more challenging at night?.

Generally the questions were always about ‘How does the pain make you feel at the end of the day’ and it always makes you feel tired, drained, don’t want to concentrate, can’t sleep, very moody, very snappy, very snappy. So it tells you how to really cope with that feeling.

If you do feel it’s getting that bad, stop. Just stop what you’re doing, sit down, rest, do what you’ve got to do to alleviate the pain and then try and forget about it really and think positively. That was one of the main things at the end of each one was try and think positively, don’t think of your pain as your, what do you call it? As your enemy. It’s there but don’t, just don’t think about it really, try and put it to the back of your mind.

Could you tell me a bit about what happened on the Expert Patient Programme?

Okay, on the Expert Patient Program there were invites sent out to a variety of people with chronic illnesses, and they were invited to a day seminar just to tell them what the Expert Patient Program was all about and I was at the pain clinic when the sister had said, ‘Have you heard about the Expert Patient Programme?’ and I said, ‘No’, and she said, ‘Well theres a phone number that you can try.

And I was invited along to the start, I’d actually missed the interview, the one day seminar but I got invited to go onto the course itself, which I did do, and then while I was on the course, each day you were set certain challenges and tasks to do, and part of that was about management, the management here and now in the present time and in the near future, any changes that you were having problems with would be debated around the table and hopefully that out of all the answers something would click for you, and you’d think, ‘Oh yeah that might work for me. So you got some insight of different, other peoples thinking on how to deal with things on your own.

There was also breathing and relaxation and the benefits of breathing and relaxation, managing depression and goal setting and managing your own lifestyle. Communication and your rights and how do you feel about communicating with certain different people and that, and how do you improve your communication skills.

I learnt a lot about pain management strategies through the patient support group which I became involved in because as I say the nurse who started it had actually learnt her own strategies from a pain management programme. One was not available here at that time. In fact still I would have to travel to London to go on a Pain Management Programme which is what 60 miles away.

But I found that by talking to people who had been on courses, and I learnt a lot. Also because we actually, as part of our group meetings, we used to take topics like pacing, goal setting, relaxation and actually have a group leader take a session on that topic. You know and people could come and learn about it that way and practice it and talk about the issues around it. So we did a sort of, like our own mini self Pain Management Programme here.

That may not be ideal but for a lot of people it was the nearest thing going to get to a Pain Management Programme, either geographically or because the waiting lists are so long and even if they were on waiting list it had enabled them to become familiar with those sorts of ideas while they were waiting which was often helpful.

I chose not to apply to go on a pain management course but I did do a huge amount of reading. I’ve read a lot of the medical texts and the books written by other patients who were using those sort of strategies, particularly American people where there was a longer history of pain management and I found that enormously helpful and I was sure that I could have been helped you know to get a more, a quicker and more sophisticated knowledge about it but I think there was an awful lot you can learn just from reading. There are some very good self help texts on the market when I was first introduced to the ideas of pacing, goal setting, relaxation, that sort of thing, exercise.

I was very fortunate because a health professional who had been on a Pain Management Programme was actually asked to write his own account, a patient account, of his experiences and that was a very good book to have as a learning tool. But I think for someone who perhaps needed a more social context to learning those strategies it might have been more difficult. I happened to find it helpful and relatively easy to learn things by reading it. It just suits me but it doesn’t suit other people.

I mean of course it does mean that if were in a group where you are learning pain management you get a lot of support from the other patient members whereas if you are doing it by yourself, reading it from a book, you are down to your own resources so there are pros and cons but that was how I learnt and I found it enormously successful and very very helpful.
What was the book?

The book I used was called ‘Coping Successfully with Chronic Pain’ by Neville Shone who actually lives in Scotland or did at the time he wrote it, he lived in Arbroath, and I can’t remember what sort of health professional he was but he was also a health academic so he had a very good insight into what was happening and wrote in a very lucid clear way. I think it’s still available. I’m not sure. It was in paperback anyway. But certainly it was great. My copy is very well thumbed. I had sort of marked all sort of things in it, written comments.

You mentioned that you’d joined the Pain Association and was that through your GP?

It was my lady GP mentioned it to me I think she was looking for the leaflet but she couldn’t find any. So what she did was to give me the phone number and said that the Pain Association had actually been to the surgery and delivered you know what the actual Pain Association was about and what they do.

So it was her that suggested a try-out. I said ‘Is it not for things like cancer pain and that, you know, real. ‘No, no, no’ she says ‘It’s for all sorts of types of pain. So I got in touch with them just before Christmas it was last year and I joined and I got offered a place on the course and that was February or March, April because it ran for 7, one day a week for 7 weeks and I did learn quite a lot from it. I must admit. There was a lot of things said in it that I’d never really given much thought because sometimes simple things that’
Tell me about what you learnt?

Things like pacing, things like, well the relaxation tapes I was aware of anyway but making affirmations.
Can you explain a bit more?

Well, just sort of thinking about you know if you are feeling very hot, if the pain feels really hot, sort of closing your eyes and thinking about something nice and you know like a nice cool blue veil just sort of slipping over you to kind of help to ease the pain or sort of seeing yourself in a room, in a nice comfy chair and just sort of floating there and this lovely veil of relaxation and comfort just kind of slipping over you.

Just things like that really. It’s quite difficult to explain. Well I’m not very good at explaining it but things like that, that I never really thought of before, but the pacing was a good thing, you know about how you can pace your day. And something else that weve spoken about like a cup being half full and half empty, you know if you’re feeling pain and what not, you know that’s taking things out your cup, what can you do to help put things back in your cup to fill it up again, things that relax you, that comfort you, that may make you happy, just things like that really.

Just small things that you maybe never give a thought to but can make a difference and that’s obviously the social thing about, meeting other people with different kinds of pain and just seeing what they go through and how they cope with it as well, it’s quite amazing really.

Just as I say how things like that can help not take it away but they do help but it’s like everything else you know you have to kind of practice using the relaxation tapes and you’ve just got to kind of practice the pacing. You’ve got to know when to stop when you’re doing too much. When to rest and the affirmations it’s sometimes difficult to concentrate but it can happen, you know.