Interview CP45

Age at interview: 54

Brief Outline: Back and ankle pain following accident, 1990. Surgery: Surgery for back and ankle injuries. Treatment: Intensive rehabilitation, TENS. Pain management: One-to-one counselling psychology. Current medication: Morphine (MST Continus), anti inflammatory drugs.

Background: Retired risk management/human resources, Voluntary work for Action on Pain; married; 2 children.

Recommends that people try a TENS machine before they buy one because they don't work for everyone.

Ultrasound yeah. Certainly in terms of using an ultrasound, I get sort of very sort of tender soft tissue problems and I find an ultrasound machine is quite useful to ease those out and then a TENS machine again for areas of isolated pain, that's quite useful as well, but only on certain parts, because on other parts of my injuries it can sort of trigger off other bits and pieces which aren't very comfortable.

What I do always stress is what works for one person may not work for somebody else. Pain's very much an individual thing and so it's important to, yes you can try TENS machines and most suppliers will say try and if it doesn't work in say twenty eight days, you can send it back and get your money back, just less the cost of the pads. The electric, you know, the pads, and that's fair enough.

Or some physiotherapy departments or pain clinics will actually loan you a machine for a while to see how you get on with it and then they sell them on at reasonable prices. And they work for quite a few people. As I say, I do stress not for everybody.

Found it hard to get back into paid work so decided to do voluntary work in chronic pain.

I tried to go back to work twice, I was determined, very determined that I would go back and I tried and I failed twice. The first time wasn't too bad, the second time was really demoralising and I thought I don't like this, I don't like being defeated, and once yeah, second time not good. 

 And I thought 'Well where do we go with this' and I decided that I would take the voluntary route with the support of the medics and my family, we decided that was the route to go because it was clear that my pain wouldn't go away and my orthopaedic issues would increase.  

So, and it's proved to be a really good route because with voluntary work you can put it down when you're struggling and that's an important side and you feel a useful part of the community, you're doing something. The vast majority of my voluntary work is in chronic pain. 

I think out of the frustration that I went through with my journey through and people I've spoken to at various points in my journey, decided to do something about it and formed an organisation called Action On Pain, which is now a national charity for people with chronic pain. And it's run almost entirely by people with chronic pain and health care professionals working in that field and it's been a tremendous journey.

Accepts that sometimes he'll have pain for a few days after doing something he really wants to...

I've learnt now to take new things on board, I've learnt new skills and abilities and I challenge my pain in a very positive way. Pain has ups and downs, you have good and bad days, and I know that my injuries are gradually catching up with me, but you, so you fight to keep it at bay as long as possible and we have a lovely thing in our household, it's called a 'sod it day'. 

And people say 'Well that's terrible, you can't have things like that' and we say 'Well we do, because what a sod it day is all about is that you are going to do something that you know you're going to pay for, for the next few days, it's going to hurt, sometimes it hurts quite a lot, but you really enjoy yourself and you think well sod-it' and then that's all right then but then, in the future, when you're down you can look back at what you've done and it boosts you up again.  

And that's really important. I went micro-lighting. And what I didn't realise was that the engine in the aircraft is behind you.  Well, if you've got a broken back, to have an engine vibrating up your spine is not a good idea and I was in bed for about ten days afterwards and it really knocked me out. And yet, a few years on now, I look at the photographs of that day when I'm, you know, I'm having a bad day and I think 'I did that' and it's a lovely feeling and I'll always encourage people to sort of challenge their pain in that way, because there are lots of things you can do.  

Realises that the anger and frustration he feels with his pain and limitations can make his pain...

I think, yeah, I think if you're worked up in yourself the pain can be far worse. I mentioned earlier about you know distraction techniques and I think that's really important. I think, when you're stressed, you're naturally, your pain comes more into your mind and when you're relaxed tends to sort of trickle away for a bit, which is really quite nice. 

And I think, when you're angry, your pain comes up more and my anger comes from my frustration of not being able to do things or if I get stuck or my ankle gives way and then my pain is there. You know, it stares you right in the face because that's... and you can't get away from it and I think that's when it hits you more. But certainly stress levels yes, it's there quite a bit and...

How do you deal with that?

Not very well sometimes, you sometimes just have to let time take it's course and things ease away. But again if I, it depends, I mean, if you're by yourself then some of the ways I mentioned earlier, you know, just about, 'Right, that's it, it's come, I've got to stop what I'm doing' 

I'll go off in the car and I'll go and do something else and get away from the issue, you know, and if that means going up by the river or something like that, great. I'll go and sit by the railway line and put my anorak on or something like that, you know, and get away from it. But that's quite useful. If it's with your family, it's a bit more difficult because you can't suddenly whiz off, you know.  

If I'm looking after my son, because my wife's at work, something like that, you can't whiz off, you have to stick in there. And again, you try and let time whiz it through. Sometimes that doesn't work and I'm probably not a very good playmate then but that's it, there's not a lot you can do about that it's just something that's there. I defy anybody who says they'd cope with their stress completely with pain, I don't believe them.

Uses a wheelchair occasionally particularly when going to the rugby to avoid problems with people...

With chronic pain, what you have to do is to make sure it doesn't get into the way of your day to day life more than it needs to. I talked earlier about being able to say 'Well what can you do' as opposed to 'What you can't do' and socially, life is pretty good. 

You just get involved in different sorts of things but take into consideration that you've got your pain and, as I said earlier, there's things you can't do but there's nothing to stop you and the usual sort of social things, with family, friends, going out to events, things like that.  

I mean, if you go to a rugby match I have to go in a wheelchair because although I use a stick most of the time, people tend to still come straight towards you and, of course, if its been a rugby match and they've had a few pints, their sense of direction is probably worse than mine and they just bash into you.  

So you go in a wheelchair, so again it's adjusting so you can actually do things. And I have a philosophy that if I want to go and try something, I'll have a go and if the facilities don't accommodate you then you have to find out if there's a way of doing it. If there's a way round it. 

Because some places you go to, all right there's a new disability act but they're just not aware of it and sometimes you chat to them and say 'You know have you thought about putting that there because that would really help?'. They're quite amenable to it because they probably haven't thought about it and I find if you go in a constructive way and ask and suggest things, it sometimes works.  

Feels that he can be a proper Dad he just has to do less active things with his children.

Certainly my daughter, her view on disability has changed considerably. She has become involved, has been involved now for a number of years now, with riding for the disabled and one of the things that the manager of the centre has said is that she's got a knack with people with disability.  

I'm sure it's come from those early days. Because it's sort of, even at that age, to see your, you know, sort of Dad fit one moment and then not seeing him for, I think it was about seven or eight weeks, sort of must have had quite an affect and you, and I think that's the way it's manifested itself that she now, you know, has a real understanding which a lot of fifteen year olds don't have and it's probably going to shape the career she wants to go into.  

So yes, and then on the other side, my five year old just adjusts. You know, one of the big hang ups is that, when you're thinking of having another child, is that can I be a proper Dad? You know, can I do everything that a dad would do.  

And I say to anybody 'Yes you can, but in different ways'. You know, I can't run, I can't jump, and I find it hard to get on the floor and sort of have a bundle, as boys like to do, but there's other things you can do and my son'll say 'Oh well, we won't do that because we know Dad can't do that'.  

Tell me about the things you can do with your son...

When he says 'Well you can't do that' we do all sorts of other things. You know, I'm a self-confessed anorak, I like railways, and we both get involved in those and we're actually building a model railway at, at home. And we do things like that and the area we live in there's a lot of military aircraft and we're quite involved in things like that and so it's all about, it's not compromising, but it's adjusting. 

As I said, you learn about things that you perhaps not of thought of in past and you learn new things and you learn that with your children as well and you're able to support in other ways. You know, teaching them things and helping in education and we just have a laugh together.  

Feels that chronic pain is a hidden disability and recalls his daughter saying he needed a 'P'...

I think in terms of getting people to understand about chronic pain. First of all it's got to be an acceptance that it's there. As I said earlier, you can't see it. My daughter says 'Dad you should have the letter P stamped on your forehead so then people would know that you're in pain'. I think that's extreme, but she's got a point. 

But people need to be able to talk to you freely about it, to, if they're not sure, ask don't shy away from it because it makes it more difficult for all concerned. Try and understand how it affects you. I sometimes screw my face up with pain and people think I'm smiling at them and they smile back and you think 'You don't realise what's going on.'  And that's, that's the sort of thing. They have to talk to you and saying 'Okay, you're in pain, what can I do to help?'   

And don't be afraid to ask if you need help. But to be able to tolerate, sometimes it slows you down and you can't do things as quickly as you want to, it wears you out, it's frustrating, and to be tolerant of it but try and understand what's behind it, that's the important thing.  

As I said, it's easy to see a plaster on a leg and you think 'Yep, broken leg' good chance that you got it right. But you can't see the pain and so you need to just take that step further and it doesn't make somebody any different, they just need that little bit of understanding.