Interview CP11

Age at interview: 48

Brief Outline: Back pain since motorbike accident in 1994. Pain management: Out patient NHS pain management programme. Current medication: Occasionally uses anti-inflammatory drugs.

Background: Unemployed; divorced; 2 children.

Was assessed before going on a pain management programme to make sure he was going to benefit.

Well the process to go through the pain clinic is just, you get a referral from your doctor and the doctor would then... the pain clinic would actually get in touch with you and you go for an interview, the initial interview, and with a psychologist, I think it was. And they assess you. If your, think they'd be, get a benefit out of the programme and they get back in touch with you and you go for a second interview, I think I went for a second interview, and they tell you when the programme's going to start and the programme lasts for I think it was 12 weeks and the actual programme itself it's like a group therapy session. 

I wouldn't say group therapy but it's a group session, a group discussion and it was always done things in a group and there was psychologists, physiotherapists, medical profession and they've all got something to say and they get feedback from you and you go through various parts of programmes like exercises. How to do the exercises properly, how long to do them for, when to do them, relaxation. I think that was a big factor that didn't really work for me. I've got my own way of relaxing so relaxation tapes just did not work for me. 

I had to use music tapes to relax and that went on for 12 weeks. Psychologists talking to you, understanding things, lots of form filling in and that was it. And one interview, well one meeting, about a month after the programme had finished just to see how we were getting on with things, see how we were coping. I'd say my mobility because of the advice I had got from the programme, I'd say it went up by another 20-30% so I'm quite happy about that. I'm actually being able to get on with my life to a certain extent. Well, I'm not as near as what I want it to be but a lot better than what I was before.

Finds it frustrating that he can't do jobs for his mother anymore.

Well, my mother's at the age now, normally somebody at that age would not really need looked after but she doesn't really need looking after, she's quite independent. But she's in a lot of pain as well. 

She's got a dodgy back, arthritis, asthma, bronchitis, whatever it is and she really needs to be taken out otherwise she gets static stuck in the house all the time. I mean I think it was about 2 years ago she stopped going on holidays abroad or anywhere because she was in too much pain. She didn't want to go anywhere. She's 'I'm better off at home' and it's her way of thinking like. So she just stopped going on every holiday and when she gets something wrong she's like 2 or 3 months at time before she actually gets back into the swing of things and gets moving about. 

But she's just coping with life the best she knows. And I feel a bit annoyed at times because sometimes you want to help them. Do things for them and all the rest of it and I can't. I'm stuck. I've got my pain. I do as much as I can, when I can but obviously if she's needing a job done about the house she's now actually got to pick up the phone and get a tradesperson out to pay for it and to do the job and pay for it. Whereas before it was like she'd phone me up and I'd come along whenever I could and do the job that needed done like. You miss things like that but such is life.

Was advised to take bed rest but found it made the pain worse and that gentle exercise helped.

You mentioned that you think you were given some wrong advice?

Well, I was actually, well I thought I was given advice anyway. At the time I didn't because apparently that was the thing to do was rest and the more I rested the worse the pain got. I mean I couldn't sit down for any length of time, I had to move about a lot. 

When I was lying down I got relief from the pain but it seemed to come back with a bit of a vengeance and I found that actually lying down made it worse. I was lying on my side... I was lying on the side where the pain was, I was lying on my back. Couldn't lie on my stomach at the time because I was nearly 16 stone. I was quite a big guy at the time like. And I didn't seem to be able to get any relief at all. I mean having to lie in your bed with a pillow between your legs feeling like your bladder is going to burst any minute, just the pain was causing a lot of associated pain as well like.

I started doing my own exercises because I noticed that being static all the time, being immobile seemed to cause a lot more pain than I should have had and I noticed sometimes that when I was walking just about the house, sometimes I got a bit of relief with the pain so I thought 'Ooh maybe this will work' so I started doing a few things and I made a few enquiries as well. 

I had a lot of physiotherapy right from the very start but the first physiotherapists were actually scared to touch me because every time they did something it caused me a lot of pain. Second physiotherapist was actually down on this area and he was really good. He was actually amazing, he made me do things that I thought I'd never be able to do again. 

The stretching, the bending... and I found my mobility was actually really sort of relief your pain. Not too much. Too much can actually cause a lot of pain as well. Just within bounds. When the pain starts, stop doing the exercises, and at first I was a bit on the impatient side. I probably caused myself more harm than good. I kept on going till the pain got too bad that I couldn't do anything. So I found out that's not the way to go. I have to pace myself. So I found out that way.

Was told that he was not suitable for an operation but was relieved because he knows surgery is...

Well I don't know why I wasn't suitable for an operation but I thought, I think it just wasn't serious enough and it wasn't causing me like excruciating pain all the time to sort of warrant an operation. I think what was explained to me is they only operate under extreme circumstances. 

If your pain is, if you are screaming in agony with pain or something like that, then they'll obviously have to operate, or have to do something like... but mine wasn't that bad as to warrant an operation so I was actually quite happy about it at the time. I didn't really want an operation. 

I had some people were saying to me like their operation had went fine. Other people, like my mother, she's had a couple of discs out of her back and she has been in agony ever since, just with scar tissue. Scar tissue tends to tighten up and that causes a bit of bother on the nerve as well like, so everything else I was quite happy with, not having to go through an operation and I thought well pain can only get better, it can't get any worse, but it did. 

I mean there's not much you can do about that. So it was investigations in to the pain itself sort of stopped there and it was basically doctor's treatment after that. I got a bit dismayed at the time and that was about it really.

Says you have to challenge the "why me" thoughts with "I can cope" and "it will feel better in...

I don't think there is any special thing you can do to sort of take your mind off the pain. It' just, it's positive thinking. If you go into a negative way of thinking about things like 'Ooh my pain's on. Why me. Why is this happening to me. Why is it not gone away' and things like that, I think that puts you into a backward slide. 

Positive thinking, I mean to give you an example, if I'm out on one of the rare occasions, maybe I'd go for a drink or something like that and we're in the pub, having a few pints with the lads, and if my pain comes on, they wouldn't know. They'd notice me fidgeting about but I suffer it to the extent that I think if I get through the night, fine it's okay but if I'm getting to the extent that I can't handle it anymore I'll just say 'See you's later'. I phone a taxi and go home. 

But there is nothing you can really do to get rid of your pain, you've just actually have a wee bit 'oh it'll be okay in the morning'. A bit of positive thinking helps and it puts you in a better frame of mind and when you do wake up the next morning and you feel a wee bit better, your positive thinking keeps on going. 

It's when you get into the downwards spiral a wee bit of depression and thinking this is just going to get worse, it's never going to get better that can make you worse. It's just a bit of self healing in itself, self help like you know.

Had several spasms of pain in public and was embarrassed because people thought he was drunk....

I will go into a pretty deep depression and I actually got to the stage once, one incident was in a supermarket and I got a severe spasm, muscle spasm, and I fell, well I actually collapsed, in the supermarket and like I was pretty vocal about my pain and one of the assistants called the manager and they actually took me for a drunk. 

The way I looked with the long hair and the beard, things like that, they just took me for a drunk and called the police and the police came and I explained my situation and they helped me into the car and took me home. So it was pretty embarrassing and after that when I got to the stage where I didn't want to go out just in case it happened again. It was an embarrassing situation to be in. 

To explain something, this illness, not illness, this pain can be very, very embarrassing in front of people and it tends to make people with this similar type of pain I'd say a bit reclusive just in case they get the severe spasms again. In front of people it is really embarrassing because you just don't know what to do, It's hard to explain I mean one minute you can be fine, the next minute you can be actually rolling about the ground screaming. I wouldn't say wailing, but lying on the ground sort of screaming in agony. 

But the pain is that severe at times. Luckily, in the past couple of years the pain hasn't been as that severe. You know when the pain's coming on, I can actually feel the pain coming on, and you get the wee twinges and then all of a sudden you get this severe one second spasm and that's it. 

Sometimes if you don't catch it in time, you can lock up and the severe spasm can go on for 2 or 3 minutes before it actually seizes up a bit, you know loosens up, then you can move. But a couple of times I've been out with friends and the spasms came on and I can't do nothing. They had to go away and get a taxi for me to get home. So it does make you a bit on the reclusive and depressed side.

Developed tennis elbow from using a walking stick and has had to stop using it.

You mentioned earlier that you'd had problems with a tennis elbow?

Yes, tennis elbow seemed to be I think it was caused by the walking stick. I was using a walking stick quite a lot and I was putting a lot of pressure on my right hand side and I started to get shooting pains in my elbow and so I moved it to the other side the walking stick and I started getting pains in that elbow as well like and I got physiotherapy for that and that seemed to go away and I moved back to my right hand side and it's just the weight leaning on the arm constantly. 

All day, every time I was walking I was mostly using the walking stick when I was outside and that just caused problems as well. And it's been there for about four months now. That's a bit annoying, I'm waiting for physiotherapy for that but I mean you can wait six months for physiotherapy, to actually get the treatment and by that time it's either away or it's got really worse. So I'm having to try and walk without the walking stick now so I can't walk as far as I would.

Breaks up long car journeys and when his pain is bad drives on smaller roads so he can stop easily.

If you're going on a long car journey, you've got to plan it in stages because I know I can only drive for about 45 minutes maximum without being really uncomfortable and having to shift about. And if you've got to shift about when you're driving it's no the best thing in the world to do. 

It's not the safest thing in the world to do so what you've got to do is plan your journey and take it in stages. Now if I was going anywhere in about 200 to 300 miles I'd have to plan that journey for at least the first two or three stops would be 45 minutes, then after that it would be as and when. 

So I'd need to find out. I couldn't be in the middle of a motorway with 20 miles to go and be in severe pain. If I knew I was getting a lot of discomfort and pain. I'd actually have to get off the motorway and start going on the A roads and B roads, just so I know I could be able to stop. 

So you've really got to plan ahead for things like that. It's all forward planning. If you want to make a journey, plan for an occasion it's basically what I say planning, forward planning, forward thinking.

Claims mobility allowance and uses this to keep his car on the road which has made a big...

What would you say to somebody else in the same situation that's access, thinking about needing to access the Benefits system?

I'd say it all depends if they were mobile, some people need the care allowance, some people need to be looked after, I was on the mobile side, I needed the mobility to get about and I couldn't afford to keep the car going without having something like that. 

I explained this to the doctor that came to examine me in the house and she actually says 'Well this is what the benefit is about' and she explained that and she says if I pass a medical, well if I fail a medical for this, I will be granted the Disability Living Allowance. 

So I would advise anybody else to actually, if they are in a similar situation which their mobility is affected to go and get the mobility allowance because this really helps. It's about '40 a week and '40 a week is round about what I'd spend on petrol to get to the shops, to get here. 

I mean I need a car to go any more than about 150-200 metres, to go 150-200 metres can take me an hour and a half if I've got bad pain. I go to shops that's about 500 metres away and I've seen me take an hour and a half, 2 hours, to get there and back when my pain is pretty bad but with a car even if you've got your pain you can get jump in the car, go, get your messages and come back again and be back in the house pretty quick. 

Gives you a wee bit mobility, a wee bit of freedom, you can, if I go to the swimming pool, I can never go without the car. You need the car to go out, it's public transport just isn't in that area so I use the car, get to the swimming pool, relax about in the swimming pool, use the sauna, jump back in the car again, come back. If you're in pain at least you're home pretty quick. It doesn't affect my ability to drive for like half an hour at a time. Any more than half an hour it's just even sitting in a car is too uncomfortable so...