Interview CP28

Age at interview: 47

Brief Outline: Neck injury during surgery (hysterectomy), 1993. Surgery: Cervical discectomy followed by microsurgery to release trapped nerves. Pain managment: Out-patient pain management clinic. Medication: morphine, co-codamol (Tylex), diclofenac.

Background: Home carer (not working); married; 3 children.

Finds guided visualisation difficult and prefers to use progressive muscle relaxation.

Have you tried things like relaxation at all?

Yeah. I've done relaxation tapes and I find it very hard to do that because of the pain, when they say, you know 'Well just imagine you're on a beach and all you can see is the blue sea and the golden sand' I can't do it. I just cannot see that in my mind and I think that is just because the pain is there all the time, you know.  

But I'm not very good at visualising things with my eyes shut. But yeah, I'll do the, you know, the relaxation where you know you think of your fingers and then you think of your arms and you relax them as you go up your body, I can do that. But I'm no good putting a picture, and I used to be able to do that, I could do that but I can't do that anymore.  

Has taken up cross-stitch and finds that this and her grandson a good distraction from the pain.

The only thing I think that helps the pain is distraction. Just somehow find something that will distract you from the pain. Nothing makes the pain go away. Whatever you do, nothing makes my pain go away. Yeah perhaps you can say oh well you can ease it if it's something warm or something cold, but then that's something different and I think that is because you're thinking about 'Well will this work or won't it work?'  So you think 'Well perhaps it does feel a bit better like that' but no I truly think you've just got to distract yourself from it somehow and find something that will do that.

What do you find is the best distraction?

Probably, I started doing cross-stitch, which I didn't do before all this, but I find with that I can pick it up, I can put it down if I'm doing a good, big project or something, then I'm eager to get back to it and see it, you know, evolve and then to see people's faces when it's finished. That's very satisfying, that's something that, you know, I can, that I can do now, that I get the same sort of feeling as doing something well at work.  

You know, it's something that I am proud of and I will say that, I am proud of, you know, what I do and it is good. But then I like to, I've always liked, I can't fail, I'm not, I hate failing, and I know I can do that well and so, you know, that does distract me from the pain. 

And the family, if my grandson comes round then yeah you're obviously thinking about them. But that's the only, the pain doesn't go away, it never, ever, ever goes away. So just try and distract yourself from it.

Has used a Pain Gone Pen a device similar to TENS and find it helps for short sharp burst of pain...

Yeah. The Pain Gone Pen I use when I go on holiday. I find it wonderful when on a plane. It's no good for me long term but for short term, for a quick short sharp blast of pain relief, I find that quite good. So I use that when I'm on a plane. When I'm on holiday it fits into your handbag and it doesn't help me a lot but it does help a bit and I think a lot of these things are psychological anyway. I feel that it's doing me good.

How does it work?

You click it into the skin between your thumb and forefinger fifteen times, push it in, and then you put it onto the point of pain and click it for another fifteen clicks. It works like acupuncture. And I think it does work a little bit. So as I say, I do use that when I'm on holiday.

After surgery she experienced withdrawal side effects because the medical staff had not picked up...

But yeah, you know, I then went in for the second lot of surgery and that was worse than the first, a lot worse than the first lot. The after pain from that was awful because obviously they'd been playing with nerves and I just, I really thought I was going to die, really thought I was going to die after that.  

And luckily a friend of mine who's a nurse, two nurses actually came in, and saw me and I just didn't think that I would ever see my family again. I was, I felt that bad and they came in and it was something so simple. 

I'd been on morphine before I had this done, I'd had morphine after the surgery, but once I was off of the syringe driver, they'd stopped it and I suppose I had cold turkey. You know, I needed the morphine and nobody had picked this up and obviously I hadn't picked it up, you know, they were just giving me handfuls of tablets and you take them and, and luckily, you know, my friends had come in and something as, you know, as simple as that, just one drug that wasn't being given was what was wrong.

Describes the side effects that she gets from taking morphine.

Yeah. I mean the worst side effect is that you just feel so sick all the time and sometimes I just find it very difficult to eat, just the thought of food is just... but you have to force it down. I mean you do have to eat because it would be quite easy not to. I find I have to eat Weetabix, Weetabix have just been the best thing because they just act as a natural laxative, you know, because the painkillers just bung you up and cause so much constipation.  

But, if I can have my Weetabix every day, good advert for Weetabix, I don't need to take the laxatives. But to force something down when you get up in the morning is so hard and I've just got to the point now where I'm thinking I just can't eat these anymore, but I know they work.  

So the sickness and dreadful sweating, but I think that's also the pain as well. The pain comes over you in waves and then, you know, you just don't know how bad that wave's going to get and I think it's a lot of panic as well and I just absolutely drip and I thought 'oh well, I didn't realise it was the tablets that was doing this', I thought 'oh well it could be my age', it could be the menopause, could be 'cos I'm overweight, but then, when I spoke about it to other people at the pain clinic, it happens to a lot of them, a lot of them get this just awful sweating.  

But I just find that so embarrassing if I'm out, and it happens, 'cos then you panic about it and then that makes it a thousand times worse. I hate that side of it. Your loss of libido is probably, you know, the worst I suppose as far as your relationship with your partner's concerned. I mean that is just, you know, you think well is it the tablets or is it just the pain or what is it, you know, but you read the bits they give you and it nearly says on most of the ones I take, you know, that this does happen. So therefore relationships do suffer a lot.  

Is often disturbed by pain at night and finds it a lonely time and wishes there was someone to...

And it is very lonely in the middle of the night when everybody is asleep. So that annoys you, because they're asleep and you're not and you just seem to be the only person up, you know, you watch the television and you know make a drink, perhaps have a cigarette or something, but you're on your own, you feel very, very isolated at night.  

But most of the other people within the support group, they're all awake as well, but you don't like to ring them 'cos it might be that one night when they're sleeping. But we were going to have, sort of, you know, try and do some sort of help line but we couldn't really sort it out how it would work, but it would be great, you know, if you knew that somebody else was awake in the same situation as you and you could ring them up and have a chat with them, because it is a very long, lonely night.  

You know, three, four, five o'clock in the morning is just awful and then you're always thinking, you know, I really ought to get back to bed and try and get to sleep because soon it's going to be light and it's going to be time to get up and then we've gotta start this all over again. But the night is probably the worst I think. 'Cos you've also got to be quiet, you can't go, you know, thumping around doing things in case you wake, you know, other people up or disturb the dog or whatever. Don't like the night.
 

Enjoys looking after her grandson after school. When she can't manage she drops him off at a...

My grandchild is three and he is just the most wonderful little chap and yeah I actually feel very needed with him, I pick him up from nursery school I take him to school and bring him home and look after him until his Mum picks him up. But she knows that there are some days that I just can't do it but I will push myself to do it.  

There have been very few days when I haven't been able to do whatever I am supposed to do. There might be a day when I can't look after him because of the pain but then I will pick him up from school and take him to somebody else. So that is good that does make me, you know, at least do that bit.  

But no he's given me a new lease of life really. It was hard at the beginning when I couldn't pick him up and obviously he didn't understand that, you know, Nanny can't pick him up. But now he just climbs up which is good because I haven't actually got to actually physically pick him off the floor he'll climb up on my lap for a cuddle. So yeah, I suppose he understands in his little way. But no he is just wonderful and he always makes me feel happy.

Feels that sometimes it is worth letting her hair down and having a good night although has to...

You know, my friends are wonderful, a wonderful circle of friends, not including the friends I've made from the pain clinic, but sort of friends I've had for years are very understanding and I think, because I've been like this for so long, they know how far they can push. And I have fun with them, but you know when to stop and that, and they know when I say, you know, 'Well I just can't dance this evening', and they understand that.  

But that's hard, you know, when you go to parties and everybody's jumping around having a good time, and you know that you can't do it and, if you have a few to drink, which you shouldn't drink with the tablets, and I don't actually do that very often 'cos it does make me feel so bad.  

But I will have a drink occasionally and perhaps have more than I should have and I let my hair down and I lead a 'normal', you know, I'll try to lead a normal life and be like the rest. Then I just suffer the next day, I can't move.  

But at the time, it was good and I think you have to do that every now and again, you have to do, you have to just go over that boundary really and try and be as normal as you can and not worry about what's going to happen tomorrow. Not very, don't do this very often but, you know, just every now and again you have to do it just to, just to bring some normality into your life really, just, just do it and, you know, worry about it tomorrow.  

But the longer you're in chronic pain, the less you do it because you know the consequences, but no, I just advise everyone, just every now and again, just do it, you know, if it's just once or twice a year, do it. 

Advises people and their partners to join a support group to meet other people with pain.

Join a support group so that you are with people in the same situation as you. People that don't have to ask if you're all right, people know that you're not all right. And none of us want sympathy, sympathy's the worse thing. Sympathy makes, if anything's going to make you cry, someone being sympathetic will make you cry, it's better if they're a bit harder. 

But to try and be with people in the same situation as you helps and to also, I think, let partners, husbands, wives, partners, whatever try and mix with other husbands, wives, partners at support groups, social evenings, whatever so that they know they're not on their own, because they feel very, very isolated as well and that's another thing.  

I mean I don't think we think enough about our carers, because it's as bad for them as it is for us and I really believe that, you know. They obviously haven't got the pain but they've got the consequences of everyday life and not enough is given to them really.