Interview CP34

Age at interview: 49

Brief Outline:

Post-surgical adhesion pain/abdominal pain since 1979. Treatments: Coeliac plexus nerve block. TENS. Counselling. Current Medication: dihydrocodeine, amitriptyline, dipipanone (Diconal) for flare-up.

Background:

Nurse (not working), voluntary work; married; 2 children.

Her GP told her she should take her medication regularly.

Well the main drug that I've had over the years has been dihydrocodeine and I take two of those four times a day. I used to just take them when I needed them, but my GP advised me because the way the pain is now, to take them regularly so that it's in your system all the time. 

Because once you stop taking some tablets and then you go, about 12 hours later, to take, because the pain's got bad, and you go to take a couple, but he said you've sort of broken that circle and it takes longer to get out of it. So he uses those as basically a background kind of drug and I also take the amitriptyline, partly to you know, elevate your mood so that you can have more tolerance of pain and also it helps the pain killers to help more properly.  

I think it's used in people with shingles who've got after shingles pain and that sort of stuff. And I'm given these Diconal tablets which I only take every now and again, or if I have a very... three or four days, I can take them for those three or four days, three times a day but, obviously, as soon as you're better, you go back to the other ones again.  

But my GP has really just been terrific about them, you know, he's not, and I've been on the same drugs, the same dose for a long, long time, so, you know, it's, I feel it's well controlled really, most of the time.

Often wakes with pain in the night so tapes programmes to watch at night.

Yeah. Well by the end of the day I find, with the pain, the kidney pain from the lack of drainage, the niggling sort of adhesions pains along with the pain killers, I can manage most days. 

But, one thing I haven't really mentioned, is that I'm often awake at night and I end up getting up and walking around the house and sitting down by the fire downstairs and I tape a lot of stuff on the television during the day so that I can watch it at night through my headphones. 

Because the pain seems to be worse at night. I don't know whether it is because you're lying down or whatever.

Her GP had explained that addiction and dependence are different.

How do you find talking to your GP about your pain?

He's terrific. He's absolutely terrific, you know like. He'll just listen and he always tries to do something, you know, because, I mean, I know if you're on long-term painkillers obviously you have to watch out for things like addiction or dependency. But my GP has explained that, for people who are in pain, if they're on narcotic drugs, normally you do become dependent on them, but it doesn't mean to say that you're addicted and that when the pain goes away, if they fix the pain somehow, that you can come off these drugs obviously in a tapered fashion, but it's not a huge problem and it's more important to treat the pain than to worry about, you know, that sort of situation.  

In fact, he said to me that some patients who are labelled as drug seekers are actually people in pain who are under-medicated and of course they're going to be drug seekers, because they're in pain and they haven't been treated properly, you know. Obviously, you do get the people, you know, who do want to abuse drugs, but that's a different kettle of fish altogether really.

Explains that you can feel lonely even when your family are around because pain is very...

I think that chronic pain is quite a, it's quite a lonely sort of thing, you know, I mean you can have your whole family around you and, the girls I mean they're absolutely terrific, I don't know how they put up with me really, because they've had to do far more than most children have had to do, you know.  

But, [husband's name] says that something always good comes out of bad and he thinks that both the girls have learnt not to take life for granted. And they've turned out, they're quite empathetic when people have got problems, you know, they're not like a lot of teenagers, they will actually pay attention and feel something for that person, you know. So I suppose that's one good thing that's come out of it.  

But, I think the loneliness side of it was really the worst you know. I mean, even with your own husband, if I'm in another room and the pain starts getting bad and he comes and brings my pain killers and things and, it's not, it's as though he's still not there, it's just something internalised that you just feel you're, I don't know, you just feel very alone about it.  

Finds that her pain tolerance is lower if she has to deal with other stressful events.

Well, yes it's not exactly, we've had a bit of a family hiccup just lately, which I can't really go into, but it's the kind of thing that psychologically will affect us all quite a lot and I think your tolerance to pain. If there's something else going on in your life, your tolerance to pain is just the same as if you're tired, your tolerance level drops. 

So it just shows you how much mind and body are inter-related really, because, if you're having a good day, you can cope with much more than a bad day. So I think, you know, there's definitely, your mind does play a part in it as well. But, you know, if it's just if each day comes along and it's what I expected it normally to be, you know, you just get on with it.

Finds internet support networks good but stresses that you have to be careful what advice you...

Well I find the internet's really good but I think you do have to be very careful. There's an awful lot of things, I've learnt from other people really on some of these good ones, you know, that some of the websites will say that you can do, if you take this pill it will do this, that and the next thing you know. So I think you have to be really, really careful about what, you know, you listen to and what you don't.  

But there are a lot of sites, a mean a few sort of religious, there's a few sites geared along those lines and there's loads of groups out there and loads of information out there but, as long as you're careful, it's very easy, especially if you don't have much knowledge about medical things that you know, I wouldn't take anybody's, I wouldn't listen to what they're saying without listening to my GP as well, you know, because it could be dangerous I suppose really

The good thing about... the other good thing about the internet is the fact that you meet, and especially for people who are really disabled and can't get out, is that you can have a circle of friends, you know, and talk to people. I mean, if you have a look into some of these forums sort of things, people are just talking about ordinary, everyday sort of things, like things in their back garden, you know, flowers and stuff and I suppose, for some people, that it opens up a new world to them, you know. I mean, I'm in a lucky position I can still get out and about, you know, it's... 

Finds internet support networks good but stresses that you have to be careful what advice you...

Well I find the Internet's really good but I think you do have to be very careful. There's an awful lot of things, I've learnt from other people really on some of these good ones, you know, that some of the websites will say that you can do, if you take this pill it will do this, that and the next thing you know. So I think you have to be really, really careful about what, you know, you listen to and what you don't.

But there are a lot of sites, I mean a few sort of religious, there's a few sites geared along those lines and there's loads of groups out there and loads of information out there but, as long as you're careful, it's very easy especially if you don't have much knowledge about medical things that you know I wouldn't take anybody's, I wouldn't listen to what they're saying without listening to my GP as well, you know, because it could be dangerous I suppose really.

The good thing about, the other good thing about the Internet is the fact that you meet, and especially for people who are really disabled and can't get out, is that you can have a circle of friends, you know, and talk to people. I mean, if you have a look into some of these forums sort of things, people are just talking about ordinary, everyday sort of things, like things in their back garden, you know, flowers and stuff and I suppose, for some people, that it opens up a new world to them, you know. I mean, I'm in a lucky position I can still get out and about, you know, it's...