Interview CP30

Age at interview: 66

Brief Outline: Back pain since 1970s. Surgery: Removal of benign tumor 1983. Treatments: Spinal injections. Pain management: Out-patient NHS patient pain management programme. Current medication: None.

Background: Retired university teacher and author; married; 3 children.

On the pain management programme he was initially reluctant to join in and exercise but when he...

And so it was arranged that I went into the pain management course and I was very reluctant to do the things that I was being asked to do. Like exercise. When I... every movement produced cramps and spasms, to suggest that I did exercise was completely beyond the pale.  

And I was very angry and the first week, I think I just was sitting there, well sitting there for a few minutes at a time then wandering round and then coming back and sitting down again and reluctantly doing perhaps one attempt at each of the exercises that we were given, physiotherapy exercises.  

I enjoyed the relaxation that we had, that was good. And I enjoyed the sessions with the psychologist. And at the end of the first week I was beginning to feel well I might have got something out of it but I wasn't quite so sure whether it was for me. But I was enjoying the whole process of people together sharing their experiences. What was good was seeing that there were other people like myself who had got pain and were struggling and were going through, were in various stages of coping.  

What was good, I found, was that they were people who'd started their four week session and were now in their third and fourth weeks when I was in my first. And hearing from them, that they had been like myself when they started, and I could see these people doing tremendous physical exercise, being very positive, that was, I think the biggest thing that convinced me that there was something about the pain management approach that was for me. 

I was living in digs in [city]. I went over to [city]. Lived in digs just about 100 yards from the hospital to make getting there a bit easy. And so I went home on the Friday, after the first week, and it was quite interesting that I got the idea into my head that, by then that, well perhaps things should change.  

I'd been in this situation of not being able to sit through a meal, and so I went home and decided I would sit in a different chair for a meal, family meal. This happened to by my youngest son's chair. I think I chose him because he was least likely to object, or he was the least powerful member of the family!

But I sat in his chair and sat through the meal and this became a family joke, that change does something. And I felt as though I'd achieved something absolutely miraculous and major, that I'd actually sat through a meal, simply by changing my chair. So I went back full of enthusiasm for the course on the Monday and I started to make a lot of progress.

Recommends nutritional approaches and massage as part of a broader coping strategy.

I take a range of supplements on the advice of the nutritionist. Like Vitamin B Compound, Vitamin C for the inflammation, and calcium and magnesium. And I don't know whether they work or not it's like, it's like having a magic thing in your corner and saying that's what's, but I don't know whether they work or not, but I take them.  

What advice would you have for other people thinking of using complementary therapy?

Certainly to try, I went to see an acupuncturist once on the advice of the surgeon that did my operation. Not on the advice, but he advised which one to go to when I'd said "Do you think, rather than go for surgery would it', what about acupuncture?".  He said "Well you can try it".  And he suggested a chap who immediately went through my history and said "No I don't think I can do anything for you". So that was as far as we got with that.   

I'd certainly, because of my own experience, recommend massage. Whether somebody else does it or whether your partner does it, I'd certainly recommend it. Mainly because it is very soothing. It can be very relaxing. It can help the relaxation programme, process. And I have massage from [wife's name]. 

I have massage from my wife pretty regularly. We've actually got a massage table which we bought second hand last year. Now that gives me the most fantastic night's sleep, having massage. She's learned the rudiments of reflexology. The chap on the cruise ship actually showed her what he was doing and what to do. And this helps. So I'd certainly. Certainly I'd recommend that, because I've tried them myself. 

I wouldn't recommend anything else because I haven't tried them. I'd certainly recommend everybody with pain getting a nutritional check-up. Going to see a nutritionist to see whether there's anything on the food side that is affecting them. Because you can have lots of hidden allergies and intolerances. 

And I'd certainly recommend remedial massage and reflexology. They're not the whole answer I don't think, but if you're looking for a repertoire of, to be technical, a repertoire of coping responses, that's going to see you through your life, you need to take these into account and use them when you think they're necessary. 

Has found that it is important to wear comfortable shoes.

One of the things that happens to me periodically is that I will go into, I don't know whether it's a spasm or whatever, but my legs will seize up completely, my spine seizes up and again I'll have waterworks problems and I will find that somehow my right hip feels as though it's somewhere underneath my armpit. And I become bent over and sometimes these spasms can last for a long time.  

Then this is accompanied very often by tremendous pain in walking and in the last, or since the early 90's I've had several spells when I've had to take to a wheelchair. Now I don't know when these things, when this is going to happen, I don't know what causes it, except I've found that it seems to be associated with my choice of footwear.  

I've found that by wearing, and I'm going to advertise here, Eco Boots, which are very expensive. But they somehow give me a tilt and a support that no other footwear ever does. And it was only by chance I stumbled upon getting a pair of Eco boots and I found that my walking, from going in a wheelchair, within a couple of weeks I was able to move much more freely with those.  

And so when I walk or go out now I always have my Eco Boots. Sorry to keep advertising that, but they are absolutely fantastic and I would swear by them. Timberland also does the same job I've found since, but they're the only two makes of boots that I find I can wear.

Describes how dealing with his first wife's illness and death resulted in increased pain.

Yes. What I was thinking about particularly was that when you've got pain, that pain isn't existing in isolation, it exists alongside all sorts of other things going on in the family and for me the most important one I think was round about the time while I was in America. 

My wife was diagnosed, my first wife was diagnosed with breast cancer. And I came back from the States feeling as fit and as well as I had done for a long time and I was really feeling my pain was under control. But I came back to my wife, who was deteriorating very rapidly, she'd been diagnosed round about February and by May she was in a very bad way.  

She wasn't really responding to chemotherapy and emotionally she was at a very low ebb because she was busy, she'd been a busy teacher and mum and doing various things. And she was absolutely, I think, terrified at the cancer. One of the things that happened is that emotionally I think she froze. We had quite a difficult time getting her to get any signs of being positive and this was extremely difficult for me.  

At the same time the burden of looking after her fell on to me, running the house, doing the shopping. And these were things that I had not done for a long, long time and I found it extremely difficult. And of course the pain levels absolutely shot up. I was really struggling. And then, at the end of July, she went into a decline, was taken into hospital and by the end of August she'd died. And this was absolutely devastating. It was one of those things where you, you come to a sudden full stop. And it's where do you go from here?  

One of the things I very soon learned that I needed to do was to get back to basics and I went back to starting all the activities that I used to do when I first went on the Pain Management Course. I got back, because I'd neglected them, to doing the basic physiotherapy exercises. I went back to going through the basics of learning relaxation techniques. I learned' I went back to targeting. You know, these were the things that I held on to. And I think these helped me to get through that period.

He was off work so spent more time with his son. As a result feels they have a very close...

Yes, use to talk about this a lot, particularly with my youngest child. He was 14 I think it was when I really had that collapse.  And it so happened that, that collapse coincided, well it led to us being thrown together a lot. He was at High School and he went on a skiing trip the same winter as I had my collapse. He went with the school and he got a broken knee while he was skiing and his cruciate ligaments were torn and so he was home for nearly three months because he wasn't allowed to put his foot to the floor. 

We really, that was the, I suppose, if there was a bonus at all, from me having my problem, it was the relationship that we welded together at that time. Because I became his teacher. He had stuff sent from school and he'd never been confident in school work. But we spent two hours each day, I suppose this kept me alert and alive and stopped me getting depressed, we spent two hours each day doing his school work.   

And we talked a lot at that time about the effects of my illness and he saw it as a positive thing because he'd got something out of me that he never thought he ever would. We had this very close relationship which, which still continues. That's not to say we don't have a close relationship with the others.

Asks for special assistance and a wheelchair at airports and on ferries ask if he can park near...

Airports. They're the worst possible thing. The amount, if you've ever been in Spain trying to get back from Tenerife or Malaga, you're taken by the, and you're on a package tour, you're taken by the coach about four hours before your flight and then you have to stand in a queue which takes about two hours to get booked in and it's an impossible situation for someone with pain.  

Unless you say "Can I have a wheelchair please? Can I have special assistance". Okay they're the times you need it.  Because if you're in distress over these situations your partner's going to be in distress because they're worried about how you're going to be. And these are the occasions you plan for. 

I know that I can't cope with certain situations. As an able bodied person would. So we have to say "Yes I have a pain problem", there are certain situations which catch me out, airports are one of them, I know that. So I'll prepare for it by phoning up asking if they can have a wheelchair available and they get you through the checkout. They get you through customs. They get you through passports. They get you onto the plane and off the plane without too much difficulty.  

Then you can think about, 'Okay, travelling is not as bad as it might be'. The same thing going on the ferry boats. We'll ask "Can we go'" because decks of ships on car ferries, there's all sorts of obstacles like big hooks and things like this, and they're a bit uneven with bits of iron work and stuff around.  

And then you have to shove and twist through between one car and another. So there I always say "Can you park us near the lift please?". And so you get taken up in the lift. It's things like this to think ahead and avoid getting into lots of situations which can really mean that you and your partner don't enjoy your holiday. So these are some of the things that we tend to do. 

Set a goal of going on a walking holiday and managed to achieve it by gradually increasing his...

And one of the targets I set myself was...  I'd been, in my ' following my psychotherapy training, I'd been going to a college, residential college in [place], to do occasional sessions there on relaxation and pain management, these sort of things, to get back into some kind of teaching role.  

And they were planning a trip to [country], a walking tour. Now at that time my walking wasn't brilliant, I wasn't walking very far. So this trip was what, 6/7 months in advance. By now it was about six or eight months since my wife had died. And I signed up for this walking tour. But in the meantime, because the tour, they, they were planning to do 10-12 miles a day in the [mountains], I thought I'd better do something about my walking. And I hadn't walked more than about, if I walked ' of a mile it was going some for me.  

So I started training for this walking tour and I used to go with my son-in-law into Snowdonia and we set ourselves targets.  He was a walker, he was a runner, and he had to go at my pace which probably must have been frustrating for him [laugh].  

But we would set off on walks, on his days off, he was a policeman, and on his days off we would set off for walks to get me back into some kind of conditioning and I used to find that quite excruciating doing that at first. But eventually I built up some fitness, built up some strength and I was able to survive the walks. So in the Spring I was able to go on this course. Not course, on this tour. 

And managed to cope very well with the walking except, what I found I needed to do, was every morning before we went out on a walk I needed to walk for an hour to get myself warmed up because I was so stiff and sore. And when we came back in the evening I had to walk for another hour or 1' to save stiffening up in the evening. If I could keep on walking I was okay but if I stopped I was in a mess. But it so happened that on that walk, on that holiday, I met [wife's name], who is now my wife.  And we walked together for eight hours a day for the week and at the end of the week decided to get married! 

Felt a tremendous sense of loss because he gave up a career and has only accepted the loss since...

I think the feelings about not working have gone on all the time and it's only since I reached retirement age I've stopped feeling guilty that I wasn't going to work. But certainly what predominated with me was always a sense of loss, tremendous sense of loss.  

I was very busy at work. I probably was reaching the top of my career, I was hoping to apply for a Chair at the University, but I'd certainly got to a position in my profession where I was recognised as having made a good contribution and had quite a lot to offer.  I was not only helping head of the core, social course, training social workers, professional social workers and probation officers, I was director of a research project working with families, testing out different ways of working with families, including family therapy and various traditional social work methods.  

And I was about to write up that research. I'd made some films, they'd been well received. I was lecturing at [university] and [university] on post professional courses. And I think there was hardly a University I wasn't lecturing at some point on the work that I was doing. And all this was suddenly taken away from me. Although I'd been struggling for some time I'd still managed to keep things going. 

But I'd worked, in spite of the difficulties, with no thought that the, these things will be taken away from me. It was just like working with some kind of handicap. But then, when they were taken away, it was suddenly, absolutely suddenly, and no prospect of getting back in because the diagnosis was slow, the treatment seemed non-existent and when the treatment did come it was, it didn't seem to me to have been effective. 

I know I felt this tremendous anger that I had this taken away from me. I had this tremendous sense of loss. And I had this tremendous feeling of guilt that I wasn't going off to work each day. And not only the loss, lose the work but apart from two or three colleagues, who I'm still in touch with, I lost a whole range of relationships right throughout the country. And this was difficult to cope with. 

And until a couple of years ago when I reached retirement age, this was extremely difficult to cope with. But now I'm reconciled to it because I've reached an age when it's legitimate to have retired.

Explains that he no longer goes to the doctor about his pain.

One thing I don't do is go to the doctor ever about the pain. Because the last one, when I had a seize up and he looked at me and said "What do you think we ought to do now [CP30]?" and then he said "I'll come and see you in a week". And I said "don't bother I'll come and see you".  "How?".  "I'll find a way".  

And so I did I went to see him in a week and he said "How did you do it?" And  I'd gone back to first principles with exercise, relaxation building up just, just enough to get back to say I managed to get here! But I don't seek medical help for pain. I wouldn't, wouldn't even think about it now. It's, it's sort of not in my vocabulary. I think there's much more to be done with using the pain management principles.