Interview CP17

Age at interview: 63

Brief Outline: Back pain since 1958. Neck pain since 1993. Surgery: Laminectomy 1976, Fusion 1986, Posterior/Anterior Fusion 1992. Treatment: Epidural steroid injections. Pain management: In-patient NHS Pain Management Programme, Expert Patient Programme. Current Medication: co-proxamol (Distalgesic), diazepam.

Background: Medically retired project manager; married; 4 children.

Learnt simple techniques at the pain management programme that weren't earth shattering but...

However, I read a magazine, and this guy had been on the Pain Management Programme and I just sort of read this story and I thought 'Yeah, that's going to be me. I'm going, I'm going to do that' and it wasn't as easy as I thought, it was in '92 and it, when I got on the programme it was '94, it took me quite a long time to actually even locate a Pain Management Programme. 

It was National Health. But the one that I wanted to do wasn't in my area and it involved, you know, Department of Health. My doctor, actually... it was fantastic because she'd had a back operation herself and she knew that I really, really wanted to get my life back and she believed me because that was the biggest problem I had was that, you know, even though I'd had these operations some people still didn't really believe me. 

But anyway she, she was absolutely brilliant. I wrote to my MP, I did this, I did that. Anyway to cut a long story short, I did get onto the programme and at that time in '94, I went into a hospital over three weeks and I cried for three weeks. I didn't really think that I was that emotional but I obviously must be but I didn't cry emotionally. I cried because I was in pain because I'd never, apart from after that last operation I'd never exercised in my life and I was now 54 and to go into a sort of exercise routine from never, you know, doing exercise. It had never been part of my life. I found it excruciatingly painful. 

But because I'd been so screened by physiotherapy, psychologists and everything like that, they knew that in spite of the surgery I'd had and in spite of the pain that I was getting, it was safe for me to do this. And I, even to this day I don't know why, but I just felt safe in their company and I don't, I don't know whether it was because I'd just read this story of this guy, you know, got his life back. I thought 'Yes. This is going to happen to me'. Even as much as I believed them and I felt safe in their company, I still went in there thinking I was going to be cured. 

And the turning, that's why it was a turning point in my life, because after 3 weeks you come out. You get a programme to practice exercises. I mean there were lots of psychology and stuff like that. It wasn't just simple. It was quite hard actually. You talked about drugs and things like that but you just learned to live by different rules and they're really simple rules and then that, there's nothing earth shattering about it. 

When anyone ever goes on a Pain Management Programme, they always say the same thing, you know, 'Why didn't I think about that?' You know instead of sort of standing there doing ironing for like 3 hours. Why don't you just do it for 10 minutes and take a break and it's all silly things like that, you know, simple things that one pushes themselves to the limit thinking that if I just do that and then I can sit down and I'll be okay instead of making your pain worse by stopping it probably helps it. 

And it's all silly things like that and also exercising which for me was the biggest revelation because now I can't live without exercising. You know, it's simple but that's part of my life. 

Joined a gym which made her feel part of society again.

That's the other thing which I probably never mentioned, when I finished my Pain Management Programme, as I say and I really hadn't ever exercised in my life apart from my short spell of physio when I had that last operation but when I came back from the Pain Management Programme, I hadn't made the video then and I used to sort of lie on my floor and think 'Oooh look at that same bit of ceiling' and I got quite bored with doing this routine exercise all the time and the whole thing about pain management is self management so it's, to, for you to empower yourself to deal with your pain and, and take you know, control of your own life. 

And because I was in that period where I had three months before I went back for my last assessment, I thought I'm going to join the gym and I did feel a bit intimated because most gyms have got a few poseurs in there and I thought 'Well, no. If I go early in the morning, you know, it won't be busy'. 

Anyway I went to the gym and I told them about my back, etc., etc., and I was quite clued up on what not to use and what to use and they were really nice and I actually did go to a gym for quite a long time and it was, and that was another thing that was beneficial to me. 

I went to the local what do you call it, you know, the local, the cheap one, the ooh, like the local community, say, I can't think what you call it, local run, council one or whatever it was, so it was a lot cheaper. And I went early in the morning and there were people there obviously probably business people but again I felt 'Yes, I'm part of society again' and I, and that really boosted my morale. 

Okay, I couldn't go on the rowing machine and I couldn't do this and I couldn't do that but I felt quite good and then when I moved I joined, I did join the one across the road and you know okay there are a lot of young people in there and I think, you know, the trainers probably prefer the young people but it doesn't matter because you've got all the machinery there and the equipment and they are genned up on how to tell you what to do and I, you know, it would be better to spend your money on something like that where you are really benefiting from it and meeting other people and they've got classes in there and things like that. 

Was desperate to have back surgery in the hope it would cure her pain. She regrets not looking...

When the doctor said he was going to give me a laminectomy I have to be honest I couldn't wait to get in that hospital. I didn't realise the extent of the surgery, I have to admit that because that's another thing, you know, going now people ask questions and they research. I never did anything like that I just knew that I was in excruciating pain and I had four children and I just wanted to get better. 

You know, I wanted to get in there and get out again. I didn't realise that it was such a big operation. I was in hospital, I think then I was in hospital for at least two weeks. When I came out there was no physio. That's... I also think that's quite funny really now. There was absolutely nothing. I just remember the surgeon coming in a couple of days after the operation, lifted my leg up in the air, because that was one thing that I couldn't do, I just couldn't, it's always been my right leg and it still is my right leg today, he lifted my right leg up and said 'Oh, that's a success' and you know at that time I thought it was. 

And as I say, it was quite a long recovery period. I think it was probably three months before I even thought about going back to work and I only had a part-time job but I do remember going back to work and probably within weeks the pain returned. You know, not in its severity but I thought 'Oh no, it hasn't gone' and I'm probably a bit stupid to think that it was a cure or because, you know, nobody ever said it was going to be but in my head, I think that's one of the things I've learnt as well is that most people if they've got a chance for an operation they do think it's going to be a cure and it rarely is.

Explained that the pain management programme helped her accept her back pain and that she would...

And most of all it was the hardest part, but I accepted that I had this damn back, and that I would have it for the rest of my life but there was a life with back pain and once I'd accepted that I'd, I just got on with my life and I've got a different life now and I don't know why I'm crying for now because I do have a good life. 

But that was really hard for me because on the, they had psychologists there, or two or three psychologists, and although I cried a lot all through the course I hadn't really said much about my job but to me in my heart that was all I wanted to do was to get back to my job and on the last day the psychologist, we all went in individually on the last day and he said to me you know 'da di da di da. How have you found it and all that?' And I said 'Well, I didn't answer a lot of your questions' I said 'because I want my job back and you can't give it to me and...' He said 'Well, you've got to accept that, you know, you won't go back to that job' and something just clicked in my head and I thought you know 'Yeah, you have got to accept it' and I, don't ask me why and when anyone ever says to me 'What did you gain from pain management' I always say 'acceptance' because that is, that is what I gained from, I mean obviously I gained a lot more than that but that acceptance is a turning point. 

Was frightened that sex might hurt her back but realised it was okay and that there are ways to...

I know it's quite funny actually because when I made the video I wanted to include sex. I don't mean I wanted to include sex, but I wanted to mention sex on it and the physiotherapist said 'Oh that's a subject that not a lot of people want to talk about' and of course they don't you know. But they often do quietly and it's something they do want to talk about and there are quite a lot, there's quite, actually there's quite a lot on my website about it because there is a good book about back pain and sex. 

Of course it does affect your sex life, you can, there's... I don't want to go into a lot of detail there, of course there are lots of positions that you can use where, you know, it doesn't put extra strain on your back or just refrain and cuddle. I mean, you know, full sex life, yeah of course it's important but it's just as important to have the company of somebody, you know, cuddling and things like that are often more important and you know when you feel ready for it, you know, I suppose I liken it to when you've had a baby. 

You know, you've had a baby and the last thing on your mind is sex. It doesn't mean to say you don't love your husband because you do and you know but you've got this little baby and the thought of having sex after just having a baby is the last thing on your mind. And it's the same thing, you know, with, in fact I can remember as it happens going back a long, long time ago, and I'd had an operation and after one operation I was feeling quite sorry for myself and then all of a sudden you know I snapped out of it and I thought 'I've had enough of this feeling sorry for myself' and I snapped out of it. 

And we were actually just sort of lying, you know, on the floor and it was just quite funny and all of a sudden it just becomes quite natural again because I think, you know, I was frightened that I was going to break my back and things like that, but I must admit at the time I didn't read any books at all. It just, it's like anything you know once you've, once you do it again and it doesn't hurt, you think 'Oh it's okay to pursue it'.

Jokes that she should write a book "My search for a comfortable chair" and gives tips for coping...

It's quite funny you ask me about special occasions because I like the theatre. I love musicals and we touched, I always say if I write a book up, call it 'My Search for a Comfortable Chair' because I've yet to find one really, you know, and if I want to go to the theatre you know, make sure plan well in advance and make sure that we get seats from the end so you've got plenty of leg room because I have, if my legs are trapped I've had it and I don't know whether it's psychological. 

I mean I know they have to have space for them, but as I say I don't know if it's psychological or not but if I were somewhere where there wasn't a lot of leg room I would like be really in agony and I would have to think 'I've got to go out', you know, so always plan ahead like that and make sure that we've got seats in the theatre where we know we can easily move so that if we want to get up and stretch, you know, that we can do that without disturbing anybody else. 

So there's always a lot of thought goes into it. If I'm going to say for instance, New Year's Eve, because I love New Year's Eve, we always go to a special dinner for that. 

I would have my outfit planned well in advance so that I haven't got to think 'Ooh what am I going to wear' so that I'd know what I was going to wear and as for the evening I would definitely rest all day so that I could make sure that I would enjoy it. As for when we get there and what the situation is seating's like it's pot-luck really. You know, you don't know. If I'm going anywhere and I do know the people I would just say 'Do you mind if I sit in that chair' you know. 

That's as I'm saying, now I don't care. I mean everybody that I know anyway personally knows about my back so you know they go 'Are you okay?' or something you often see me doing is if I'm somewhere and it's a right grotty old chair is you see me putting my handbag in my back because you know that, to have one of those little things that you put in your back is wonderful and... or what to say to somebody, you know, 'Do you mind if I have a cushion?' because putting that in your back makes a lot of difference. 

Because the thing is if you're, if you're going somewhere for, say, you are going out to dinner with somebody or you're going to something it really is horrible if you haven't got a comfortable chair because I said you know I hold the record for doggy bags. So I would just... yeah I do prepare in as much as I would definitely make sure that I have a nice rest in the afternoon so that by the time the evening comes.