Interview CP48

Age at interview: 61

Age at diagnosis: 50

Brief Outline: Pain following myelogram (test) for disc damage in 1978. Diagnosed Arachnoiditis 1992. Pain management: In-patient NHS pain management programme. Current medication: None.

Background: Writer/driver; married; 2 children.

Explained that the people on the pain management programme all had chronic pain for different...

Anyhow there were a group of us. I think there were about eight people and one was a lady who'd had a leg amputated and had phantom pain. There was a nurse who had a... she had something similar to me. There was a postie who'd broken his neck and had pain all down his body and we were just a random group of people from all over England and we' One was a policeman who'd had a hernia operation go wrong, left him in chronic pain.  

And we just sort of... because of the common element of sort of hopelessness and pain we just gelled. There was one lady who didn't fit in. There was a girl who quit, couldn't cope with it. She was a victim of a motorcycle accident. But the rest of us sort of stuck together and we went gradually through this programme. And first of all they educated us. 

They told us how the pain systems in the body worked. They told us what happens to the body when people get chronic pain and stop moving, all the tendons, ligaments and that seize up, you get muscle guarding and all these things and so that gradually movement becomes more and more painful, not because of the original illness or disease but because you're seizing up. And so through a very gradual, a very careful process of exercise they taught us to limber up.

Was told at pain management that exercise is not going to make you worse because chronic pain is...

One of the first things they teach you at the Pain Management Clinic is that doing and acting is not going to make you worse. There's a natural assumption if you hurt that there's an underlying injury but the pain mechanisms of the human body are basically designed as warning systems, so that when you first feel pain, yes you should do something about it. 

But when pain becomes chronic it's no longer giving you any useful information. It's useless pain. That's how they described in the pain clinic. It's useless pain. 

And it's... chronic pain is usually caused by some damage to the pain system itself so that it's giving false signals and basically once an injury or an illness has been diagnosed, treated, if pain persists six months or a year after the problem has been resolved, say you had your appendix out, it's resolved, but if you get chronic pain as a result of that and I know people for example who have had chronic pain as a result of a hernia operation. 

What's happened is something has gone wrong with your pain system itself and that pain is not a warning. It's an unfortunate residue and so what you're taught is that you are not going to cause yourself injury by exercise, moving etc., setting goals and achieving them.

Feels he is not a natural pacer but knows that it is better to pace than end up in pain.

My big problem is that I'm not a natural pacer. I'm an impatient fellow and I like to get things done. I'm also a very energetic person and so again I charge ahead and do it and the worst problem with chronic pain is the consequences of overdoing things and so for example I might decide in the garden that I'm going to build a fence. Well in the old days I would have done it in one twelve hour stint, now I have to make it last ten days in spite of my desire to get the job done and so my natural inclination is fighting against pacing but my intelligence is telling me for God's sake pace.

I'll explain. Just the fence for example. If you put up a fence you have to concrete in posts. Well mixing concrete with a bad back is an extremely painful business because you're using a shovel and you're mixing sand and cement and water, achieving a certain consistency, putting it in a bucket, putting it in a hole and all the rest of it. All requires a lot of bending. And you, you're faced with a choice. You've got to put up four fenced posts, you want to get the job done. 

And the smart advice is to do one post a day and then do something for the rest of the day. Your inclination is to do the concreting which is a messy job that you want to get out of the way anyway, is to do the concreting and all at one fell swoop and you sometimes have to balance your desire to get the job finished and your awareness that finishing it in one go is going to raise your pain level. And sometimes you just have, you have to calculate. 

You make a, you know, you just make a calculation I'm going to get away with this. Sometimes you do and sometimes you don't and sometimes the pain gets so fierce you have to pack it in halfway through anyway. So probably on all accounts you're better off to pace from the word go and just learn the new way of doing things.

While he was at the pain management programme he set, worked towards and achieved his goal of...

After about, well you went home every weekend and after a week of just, one week of this gentle exercise I found that I could stand up out of a chair which was something I hadn't done for several years. You know on an ordinary straight back chair I could just stand up. I'd never been able to, you know, I've always had to haul myself up or get help up and hadn't been able to do it, and after just one week of this exercise and education I was able to stand up out of a straight chair. You know, at a dinner table whatever. 

So I was completely astonished but I had been so sceptical that all the staff thought I wasn't going to come back. They thought I was going to quit in the first week. You know I always had this perpetual frown on my face and was questioning everything and you know like, 'I don't think this is going to work'. But just that one piece of proof and so in the second week I threw myself into it much more wholeheartedly and in the second week on the Monday or the Tuesday the occupational therapist said 'Right. I want you to set a goal for yourselves. A physical goal' You know, I'm just going to carry on okay. 

And I looked out the window and saw south of the clinic was this mountain and I said 'I'm going to climb that mountain' The physiotherapist said 'Look, wait a minute. You can do that in six months. You don't have to do it on the course. If you feel that confident that you'll get that far, you know, just something for the course.' And I said to her 'You know I used to be a mountain walker and that's what I'd like to try and do.' And she said 'Seriously. Just going to the supermarket would be enough. You don't have to do anything dramatic.' 

But I'm a pig-headed individual. And having decided that was what I was going to do. I got even more into the exercises and stuff and started to do little walks. And I hadn't walked willingly without crutches a foot for four or five years. And I got some binoculars and I went and reconnoitred the thing and found that, that there was a way up it. I, with binoculars, I planned the route because one of the great things they teach in pain management is called pacing and you, instead of' 

We'll use a mountain as an example, instead of going straight to the top of the mountain you go in little stages and by looking at it I could see that I could go maybe 50 yards and there was a place to rest and then I'd go another 50 yards and another place to rest and so I figured that I could pace my way up the mountain. And I mean I say mountain, it's a Welsh mountain, it's not Everest, it's 2,009 feet high. But it sticks up out of the plain and it's a very dramatic hill and it's beautiful. 

Anyway, I did a little, just to test myself. I started doing a little bit of hill walking and I'd just go you know quarter of a mile and I found I could do it. And because of the various techniques that they'd taught us, you know, if the pain gets severe have an escape route figured out. Have a plan of action that you are going to do if you can't make what, you know, some place to rest up. You know, figure it out as you go along so that you are not going to just suddenly collapse in agony and not being able to get out of there. 

So it's all, pain management is very, very practical. Things like pacing, you know it's obvious when you think about it but people don't think about when they are in pain. But you can achieve an enormous amount if you break it down into little stages. So I figured it out and after you know, cut a long story short, after three and a half weeks and having done a couple of preliminary shorter climbs to make sure that it was at least feasible, I did it. I got to the top.

Was told on the pain management programme that relaxation and exercise produce natural pain...

They have other much more interesting and specific techniques, I can't remember what the technical term was but they taught us a sort of visualisation technique which you can, in which you can engage your brain yourself to produce a chemical called serotonin which is a natural painkiller. 

And so for example you can, they, one of the exercises we did every day, usually after lunch, we all lay on a mat on the floor and they'd play us gentle music and we were invited to imagine our pain as a something, say for example a bright light or a glaring sun or something, and imagine that is your pain and then if it's a bright light imagine that you've got control of the dimmer switch and you just dim it down, dim it down and it's quite amazing with practice that worked. 

You could actually learn how to use that technique. If it was a glaring sun well you could have imagine the sun was setting. I had a, because of this problem with my, the skin on my legs where I've got this burning sensation in my legs, I imagined in one of these exercises that I was standing in a clump of nettles and then I stepped out and, again with a little practice, you could make that work and it, it sounds fantastic. It sounds unbelievable but with training, with practice, you can make that technique work for you. 

And I go up now and lie on my bed and just, and just completely relax, imagine the pain away. And so that again is a clearly psychological technique but it is connected with actual physical mechanisms that exist in all of us but of course I was completely unaware. I didn't know what serotonins were. 

And another thing we talked about related to that is that the fact that the body produces something called endorphins and that exercise, when you exercise the body produces endorphins naturally and they are related to morphine. They are like a painkiller but it's produced by your body for your body so it's obviously completely natural and everything and exercise such as going for a long walk up the mountain produces a lot of endorphins and they have an expression, joggers high, when people go jogging and have a really good run and they feel very up and excited and happy and all the rest of it. That is from endorphins produced by exercise. 

So they, the whole process of pain management is a series of, it's immensely, practical, straightforward stuff that anybody can understand, but it's a constantly integrated approach of mental things and physical things that work together.

Prefers to not take medication because he finds they are not effective and he doesn't like the...

First of all as for using medication generally, I don't, I'm not, I don't like taking pills. I'm also forgetful. I'm not very good at the routine of, I'm not good at any routine but I'm not good at the routine of taking pills on a daily basis. 

Second of all I seem to have a very sensitive stomach so I personally, my body doesn't like pills and so anything that sort of, anything with any acid in it makes me feel sick. Aspirin make me feel really quite ill. Paracetamols are not much better. All the things, I just don't seem to respond to them and then the third thing was they don't get to the deep pain and not ineffectual. If they do get to the point where they are effective as a painkiller, I'm asleep. So for those, those reasons you know, I stay clear of medication.

Was provided with a specially adapted reclining seat and workstation, which allows him to work...

Tell me about your set-up...

This is my life-saver. I can't sit at a desk because the pain builds up too quickly, but when the pressure is off my back the pain is quite bearable, liveable and sometimes almost when you're highly concentrated, it's not really noticeable. 

As you can see in this situation, I mean all the pressure is off my back. I'm completely supported. So there's no stress in my body to propagate pain. But without this workstation I couldn't, I couldn't function. Originally, why it's rather ratty here is that originally they set it up with the supports they use for burn victims but these turned out to be very uncomfortable and so I took them off and just went back to some, some foam. And as you can see, you know, I sit here and type and I've got an Internet connection, email what have you, so I'm in touch with the world.  

Feels that becoming a househusband and his wife going out to work has created stresses in their...

It was about, I know my wife works extraordinarily hard and when she comes back after, her routine's day is 10 hours but very often she works you know she'll leave at 6 o'clock in the morning and not come back till 2 o'clock the next morning. Hard physical labour, managing/directing, doing all the physical and mental work for their, she's exhausted because she does that sort of on a daily basis it is very demanding job, it's a business outside catering and she is the business. And does all the intellectual work and also has to cook and do the physical work as well, although she's got a lot of people work for her it's extraordinarily demanding and when she comes back she, she doesn't want to have to cope with a husband in pain, you know. 

She needs rest, you know, and then I'm not a very good cook and I'm not a very good housekeeper but she's the one doing all the work and yet she, and she naturally expects that the house is going to be tidy when she comes back. Well housework is physically painful and I don't enjoy it anyway. Stooping over a stove is physically painful and I don't enjoy it anyway. I'm not a cook, you know, and so being, both of us have been forced into situation that we didn't want. She didn't want to be the breadwinner and I don't want to be a househusband. 

And this has all come about through this wretched bloody condition. And so it creates enormous stresses for her and enormous stresses for me in both things and you get into situations where I frankly don't want to feel, I don't feel like moving but then I feel guilty because I know she's been working ten times harder than I have all day long and she needs a meal set in front of her when she comes home and I just, you know, I don't want to lift a finger and so it's problematic.

Sometimes he suspects that people think he is a phoney when he gets into his car in a disabled...

I think it's hard for anybody. The basic problem is that I look perfectly normal, you know, to all intents and purposes I can do most things. I can drive a car, I can do the shopping, I can meet trains. I mean I can, I look perfectly normal. I walk, I could walk upstairs. Okay I pull on the handrails to get upstairs but to... I'm a complete physical specimen. 

If I'd lost a leg, one often feels that pain, people with chronic pain often use a walking stick because they want people to understand that there's something wrong and that it can't be seen. Pain can't be seen. It's sometimes it's very difficult. It's particularly difficult because when I'd been walking for a bit, because the endorphins are flowing, I can walk more or less normally.

And so for example I get out of my car in the disabled spot, I have a disabled badge, when I get out of a car, to get me out of the car is intensely painful and you, you sort of creaking upright and getting back into gear, you know, but after I walk round Tesco I'm back, you know I can look like a normal human being and so you get a sense sometimes as it were 'Nought wrong with him', you know. 'Nothing wrong with that fellow. He's a phoney.' And I'm pretty impervious to it but you don't like to be thought a phoney. 

And I think even with close personal relationships, when they see you being completely normal because you're in full distraction mode. You are absolutely not thinking about the pain. It's hard for them to believe that there's actually anything the matter with you.

Has got used to asking for cushions for chairs in restaurants but sometimes has to get up and...

At the beginning, it was quite embarrassing in restaurants for example. I mean we have family, we go out occasionally to restaurants or to their houses for dinners and so on and so forth. And nobody likes to be the awkward guest and nobody likes to make scenes in restaurants and all the rest of it, but most restaurant chairs are extremely uncomfortable. 

They are very upright and they are absolutely the last thing I like to sit in, and many times I have had to ask the restaurant if they can provide something more appropriate. Or many times I've had to roll up my overcoat to use as a cushion so that I can sort of recline more and sometimes when I've known which restaurant, I mean we hardly ever go to restaurants but that's why I can remember all the details because this doesn't happen very often. 

But occasionally I've known that we were going with my brother-in-law to a favourite restaurant of his. I knew the place. I would take a big cushion because I knew the chairs were awful and I knew I would be desperately uncomfortable. Sometimes my wife has to explain to waiters who look at me rather astonished as I leap to my feet in the middle of the meal and go walkabout, you know, because I've just got to, I've got to move. I can't sit like that for very long but she's learned to cope with that. 

She just explains 'Oh he has a bad back. He has to move around.' And most people once they know it's not their beautiful soup that you're leaping away from it's... you know it's, it's just your back. But it is occasionally, some hosts and hostesses are quite nonplussed when you say, you arrive at their beautifully set dinner table and you look at the chair and you say 'I'm awfully sorry but I can't possibly sit in that chair.' And they don't have another kind of chair so you then have to go in to their living room, grab a couple of cushions and try and make yourself comfortable as best you can. 

It's not a big problem but it's, it has occasionally been a problem. And I think now because of the pain management technique, I can focus on the guests, the conversation, the food and the wine to such a high degree that I've trained myself to sit in uncomfortable chairs for much longer than I used to be able to.