Eddie

Brief Outline: Eddie has had gout for 30 years. It affects his feet, knees and hands. He has had around six attacks in the last year, and is a member of an internet support forum for people with gout.

Background: Eddie lives alone and has two children. His wife died in in 2008. Eddie is now retired, and previously worked as a Branch Manager for a Travel Agency. Ethnic background/nationality: White English.

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Eddie’s first experience of gout was in 1983. His big toe became swollen and he thought he must have kicked it. He was working at the time, and the pain and swelling got worse so he took his slipper to work to wear instead of his shoe, and carried on, thinking that it would go soon. After a week, his wife persuaded him to go to see his GP, who diagnosed him with gout.

Eddie had seen his father and brother suffer from gout, although at the time Eddie did not realise how bad the pain was for them. He feels annoyed and finds it hurtful when people make jokes about gout, because he feels that they do not understand how bad the pain is. Eddie has sometimes felt embarrassed when he is in company and cannot walk very well or struggles to get to the toilet because of an attack of gout.

Eddie has been prescribed various medications to manage the pain of gout, including liquid morphine which made him sick and unwell. He currently takes allopurinol every day, and paracetamol and codeine or ibuprofen when he gets an attack. Eddie feels that his gout has got worse since he retired. While he was working, gout only affected his feet, but then he began to experience attacks in his knees and his hands.
 
Eddie finds it particularly difficult to walk when he has an attack of gout that affects his knees. He has sometimes been unable to lift his legs to get into bed and has had to spend several nights sleeping in a chair in his lounge. He keeps a walking stick by his bed in case he gets an attack of gout. When he has an attack in his hands he cannot hold things, like cups of tea. He finds that he often feels downhearted, demoralised and lethargic during attacks of gout. He does not feel like doing anything because of the pain, and he finds it difficult to cook for himself.
 
Attacks of gout also limit Eddie’s social and leisure activities, such as playing golf and bowls. Going out to meet friends is particularly important to him because he lives on his own. Eddie has an automatic car so he can still drive if he has gout in his left foot, but when it affects his knees he is not able to drive or get out and about.
 
The pain of gout is the worst pain that Eddie has ever experienced, and he describes it being like having an electric drill drilling into his knee. He thinks about gout nearly every day, and also worries that he might be eat something that will trigger an attack. Eddie has made dietary changes and tries not to put on too much weight.
 
About four years ago, Eddie had a heart attack when he was playing golf. While he was being treated in hospital, he had an attack of gout and was given colchicine. This gave him diarrhoea and sickness, which combined with the heart attack, made him feel very unwell. He has found that the dietary advice he was given following his heart attack conflicts with some of the advice he has read about gout. For example he was told by the hospital to eat plenty of oily fish, but this is not advised for people with gout.
 
Eddie has found reading information on the internet has helped him to understand gout more, and he believes that this has made him less fearful. He is also a member of a gout forum on the internet. Eddie sends supportive messages to members of the forum, and also finds it helpful and reassuring to be in touch with other people who understand what he is going through. He would like to be able to talk to other people with gout face to face, but does not know of any local support groups. Eddie goes to church regularly, and finds prayer helpful when he gets an attack of gout. He also appreciates being part of the church community.
 
Eddie has had around six attacks of gout in the last year. He believes that he has learnt to accept the idea of having gout, but does not believe that it will ever be cured. When he has an attack, he reassures himself with the knowledge that it will go after two weeks and he will be alright until the next one. He worries that his gout may get worse as he gets older.

Eddie has tried various treatments for his attacks. He prefers to take paracetamol with codeine and ibuprofen because he did not like the side effects of other medication.

I will take, paracetamol, paracetamol and codeine, colchicine, and they gave me the liquid morphine, that type of thing. But I don’t normally take much only sort of codeine and paracetamol now because the, I found the others can upset me and it upsets me more than it does any good in my mind so I don’t take it any more like that no just the paracetamol, paracetamol codeine mostly and ibuprofen, that’s what I take, yeah.

Is that ibuprofen?

Ibuprofen yeah I take that only when the gout attacks yeah, don’t take it otherwise.

And so you mentioned sort of having some side effects from some of the painkillers, you said they upset you, what kind of …?

The colchicine, when they gave it to me in hospital when I had my heart attack and I didn’t realise what it was, I knew it was a painkiller for gout because they told me, but it upset my tummy, it gave me tremendous diarrhoea and sickness, and I swore blind I would never take it again. And I have heard other people, it affects them like it, there are some who take a low dose and they find it helps but I don’t, no, and it’s like liquid morphine I had a really bad attack and I think doctor had got to the stage where you know he was giving me one of the most powerful ones he could, and I took that. It was such bad pain I think I overtook it, I’ve got to be a bit careful, and it did make me, gave me sickness, and also I was a little bit with the fairies you know, I was walking around not quite knowing where I was, yeah [laughter].

Eddie was advised to eat plenty of oily fish because of his heart condition, but then found out on the internet that eating less oily fish could be helpful for gout.

This is where you’re at cross purposes you see, the hospital said, “Now eat plenty of fish”, you know, “Eat your mackerel” and them and that, and when you look at the gout, “Don’t eat that fish” you see, “You mustn’t eat that.” So I’m a bit crossed purposes sometimes and you have to sort of go down the middle yeah.

You mentioned the sort of conflict between the advice that you’re given in terms of diet for your heart and the advice for gout, have you ever discussed that with any of, your GP or anyone?

No, not at all, it’s something I just found out myself, because when I left the hospital, they looked after me very well, I had cardiac nurses come to see me, “Oh you must eat this and this.” It wasn’t until I started looking on the internet and, gout, mackerel it’s the worst thing you can do sort of thing, yes so there was conflicts yeah but it was, nobody told me about the gout. 

When Eddie had attacks in his knees he could hardly walk. At one point he had to sleep in a chair for three days because he could not get into bed.

It was mostly in my foot, and you can get by, but when you get it in your hands like this and you can’t hold anything you know even a cup of tea when it’s in both hands, it’s very difficult. And the worst is in your knees, I never had it in my knees at work or anything like that but when I’ve had it at home, I’ve had two attacks in my knees, and it’s got to a stage where you can hardly walk, you can just about get to the toilet, but I couldn’t lift my legs to get into bed, so I slept in a chair for three days, until the time came that it started to go I could get into bed, but that was the worst attacks, yeah very bad attacks. 

Eddie worries about losing his independence if his attacks get more frequent as he gets older.

I got a bit fearful because I thought that the older I get, it could be the more gout I’ve got for some reason or another, and that it would slowly wear me down. Yeah I did worry about that slightly, because you know, coming back to living on your own, one of the things you fear mostly living on your own, you cannot look after yourself, I’ve just had two or three friends who can’t look after themselves and they’ve gone into a home and you know we visit them there and you think, “Oh please not me.” You know, they’re well looked after don’t get me wrong or anything but it’s not like your own home you see, and that’s what’s fearful, that the times comes that I might not be able look after myself if I get too bad. Even though, you know, you have an attack and it goes you don’t know if they’re going to get closer and closer together, so yeah it does worry you slightly.

Gout has a big impact on Eddie because he lives alone. It affects his sporting activities and makes it difficult to socialise. He sometimes feels downhearted and demoralised.

It can certainly cause you lots of problems, not only for the pain, but it can make you feel very downhearted, is that the right word, and very lethargic, you don’t want to do anything because the pain’s there, yeah it does. And also I’m a keen golfer but I have to play in a buggy now because of my heart, but if you’ve got a bad attack of gout then it affects your sport, bowls and golf I play, and yes you have to stop. 

Although I was retired, didn’t have to go to work, it sort of limited all my activities, and meeting friends and things like that, and when you live on your own, going out and meeting friends is a big thing you see, because I belong to, we’re very fortunate here we’ve got a [local college], but I am allowed to join their gym, so that in the winter I can go up there, if I don’t see anybody here I go up there and I see the lads in the gym. And it’s all giving you, well some more friends and you meet people, but when you’ve got the gout you can’t go, and I haven’t been for a little while and, so it limits you a bit now when you’re retired.

Eddie joined an internet forum for people with gout. He finds it reassuring to chat with people who know what he is going through.

You can see what other people are taking and – and it might help you, you’ve got people who understand what you’re going through, and you understand what they’re going through yes, it’s just nice and you feel for people who say, “This is my first time, the first time I’ve got gout it’s so painful.” And you feel for them and then they’ll probably get messages back, supporting them and then you get a little message back, “Thank you.” You know, so it must help somebody, it’s helped me I know and I’m sure it helps me, when I send messages to Americans, we’ll never meet and we’ll never know who we are, but it’s just nice to get a reassurance, “Yes we know what you’re going through.”

Eddie prays about his gout. He also appreciates the support from his church community.

I am very religious, quite religious shall we say. I go to church every Sunday and yes I do pray, you know when I get my gout, but I always think well gout, “Lord you know I’m pretty low down in the pecking order, you know you’ve got a lot more serious things to worry about than my gout”. But it does, I think it helps me when I say a prayer, you know, that I’ve got my gout that the good Lord knows I’ve got it and, no I think He helps me in my spiritual way. We have a very good church [where I live], you know it’s a village, we have a wonderful vicar [name] and [name] another vicar and it’s very close knit and you – and yes when you talk to them you – you feel safe in a way, it’s hard to explain. And, yes I think it helps, my religion, although I know as I say I’m low down in the pecking order, it does help me yes.

Eddie’s wife was sympathetic and concerned when he was diagnosed, but other relatives and friends found it ‘hilarious’ and didn’t take it seriously.

My wife was very worried because she could see what it did to my family, most of my friends thought it was hilarious, as most people do, “You drink too much port, you’ve got rich living.” You see, and I say to them now, “If you mention that I’m afraid you’re going to get a clip round the ear because it’s not funny anymore.” I don’t think it’s funny when people make jokes any more, they don’t understand and it does annoy me, yeah, but no, most of my family didn’t really take it seriously, you know, a lot of people don’t, they think it’s a sort of joke, they see it in the films with a big bandage round a foot and there it is isn’t it, and that’s it. But they don’t realise the pain and they don’t realise it’s not only the foot, it comes in your hands, your knees, your elbows, it can be anywhere and a lot of people don’t understand that.