The rheumatologist was fantastic. He was absolutely brilliant. He was able to tell me what is well, explain what was going on, what I might expect. Yeah, and map out what the, the different options might be in different scenarios. So if I got frequent attacks, that we consider going on, you know, using allopurinol. It actually made it real in that he was, you know, I suppose, just coincidentally, was able to say that he had, you know, had gout himself, reassured me that I shouldn’t, you know, take grave concern about it. That it was manageable. That it needn’t affect my lifestyle, you know, irrevocably.

Allopurinol has been really good, so no attacks whatsoever. It hasn’t, at the moment meant that gout’s impacting on my, my lifestyle, at all. So I generally don’t have to watch what I drink. I don’t consider trigger foods. I know, you know, I’ve got my theory about what people do, in relation to gout, and lots of people, initially, when diagnosed, look at trigger foods. Is it my diet? Is it this, is it that?’ and try and change all those things. Find no difference, and they’ve ended up on allopurinol or, or equivalent, anyway. So, yeah, it doesn’t change what I do at the moment.

When you’ve got it, well you don’t really, you just – it’s a case of you go to bed, then you get up, get on the settee or something with your leg up or in a, same as I say, in a bowl (of ice), just try and get the, get it calmed down a bit, and that’s basically it, you know, it’s so, for how long you’ve got it, for me, when I was working especially, it’s a, you know, your lifes on hold.

Well, the first time, with the single episode, there wasn’t anything particularly that, that was important. I mean, I didn’t like it, but, but the doctor had said, I think it will subside. It will go away. It may never occur again, and so I wasn’t in any sense worried about that, because I saw it as a, a temporary thing and not a permanent debilitating condition, which is what proved to be the case. But when I then had protracted gout, on the later occasion, that was quite scary, because I was turned from being a very mobile, and very fit person in into a, a virtual invalid with severe pain, severe difficulty in moving about in living an ordinary, sort of, life.

And what do you think was most scary about that for you?

The thought of not being able to live the life that I was accustomed to, plus the idea, I think, of living with pain of that intensity. Yeah, I mean, I don’t recall, but I’m sure I must have been taking painkillers of some kind, but the pain is quite the most awful pain I’ve come across. I mean, it’s worse than toothache or earache or – and things of that kind. It’s very hard to describe to people what it’s like. And some of it is the – my recollection is that some of it is the unpredictable nature of it – that it isn’t a continuing pain or a regular pain, but that suddenly it can affect you in a very intense sort of way. And that I found – that unpredictability, I found that threatening.

Going to get some money out of your purse, simple, simple, everyday things that you and I take for granted, and no one would probably associate with gout, it’s like – sometimes I feel silly when I’m at the cash out, at a supermarket, because I’m trying to get my money out of my purse, but because of the pinching movements we make, I can’t do it. And, you know, the girl’s sat waiting and then you’ve got customers behind you and I’m like, It isn’t intentional, it hurts for me to pay.

And how do you feel at that point when?

Very – well when I’m at the – when I’m in the – it only happened yesterday, in the supermarket, and people are queuing up and they’re huffing and puffing, and I’m trying to get my money out plus my card, because I always keep a card in the back of my purse which means I’ve got to poke my finger down, us girls know what it’s like, and get this card out, so that’s number one, that’s like, thank goodness that’s there, but then if it’s like down to pennies or pounds I like to try and pay them. But it’s the pinching movement and actually holding the coin, you would not believe it. It’s all quite difficult and people do not know do they, they don’t see that, so what they see is somebody being very fumbly and not very quick at the till. It’s not good, I don’t like gout. It affects me in a lot of ways, it takes me off my feet, that’s for sure.

I’m reasonably fit, and what frustrates me, is because it’s so painful and you literally can’t do anything, I get frustrated with that, because I feel fine. I can be sat with my foot up, no pain whatsoever, I feel fine. Then I stand up and ooh, you know, and I get frustrated with that and I think to myself, Why, what can I do to improve this situation? So yeah, I do, I use the word annoyed. I get annoyed with myself as to why I’m in this situation when really I feel, I feel as fit as a fiddle but I’m not and it’s not until, as I say, you go to move or somebody and think, God Almighty, you know, so yeah I do get frustrated and annoyed.

Can you try to describe at all what the pain is like?

[Laughter] Well some people say it’s worse than childbirth, no I don’t know, it’s difficult. When I get it in the knees because [my wife] said to me several times, What’s it like? And I said, It’s like somebody getting a knife, and driving it through the joint. It is that painful, I don’t know how to sort of describe the intensity of the pain but it is extremely painful, and of course the bigger the joint, to me, if I get it in my knees it’s far more painful than when I’ve got it in my little finger, although that is painful but, you know, that’s what I find.

It’s just life as normal. So I just take some pills every day. I don’t have gout attacks. It doesn’t really bother me. So, that’s yeah, it’s different to, you know, if you reflect back on the process you go through when you’re first diagnosed, Oh, my God, what’s going on? What are the implications? What can I, you know, is it something that I’m doing, in terms of lifestyle, which is affecting this? Can I change that? So that, that’s different, because you were, you were adjusting to it. And then I actually realised, you know, probably I’ve got to go on allopurinol anyway, and I can lead I can go back to, to normal again, instead of worrying about, you know, not eating calves liver or things like that, which I love calves liver, so… [Laughter].

Sue: A lot of people see it as a joke, without realising the implications of the pain, the pain and torture really that you go through with it. It still is the Dr Johnson type of attitude when you have these swollen limbs and bandages and, you know, it’s too much Port, too much Claret etc. Most people have very little understanding of gout and the way it can affect somebody’s body because were quite lucky in the fact that it doesn’t affect us that much, but I worked; I had one or two clients when I was working for Social Services who had gout in every single joint, which was red and swollen and for a lot of people, they got very little understanding so it does become a stereotype jokey, Oh you’ve got gout ha ha ha ha type of approach, so there tends to be a lot more understanding, particularly I think if you’ve got families who don’t understand it.

It doesn’t bother me in the slightest. Nothing. No, no. I suffered from depression on and off, have done for over 40 years. And to me, if you got a broken leg you would get it fixed. If you’re depressed get it fixed. So why am I going to get bothered about gout. No, it’s just another thing, no. That’s the way I feel about things.

Well you can’t sleep with it. It’s absolutely terrible. Like the duvet, it doesn’t matter how light it is, you feel that you want one of those cradle things over your foot. You just can’t bear touching. And even turning over in bed, the pain was so bad like brushing against the sheet it was so bad, it was really quite a bad pain.

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.

I did sleep in the sitting room, sitting up. I found that the best. I had cushions under my arms and I was just sitting there. The worst of it is you can’t drink because you can’t bring once things start easing you can move a little bit, but you can’t get a cup up to you. No, that’s it. Driving was a problem, and I just got on with it. I just got on with it I had to get on with it. When I first had it, it wasn’t as severe. Now I wouldn’t be able to drive at all – I couldn’t get out of bed. That’s why I don’t go to bed.

So were there things that it stopped you doing then?

Well, it stops you driving, stops you I would say, Yes, it would stop you doing your full day’s work, because you’ve won’t put up with that all day. Psychologically you won’t, you want to do things to ease pain problems. Yeah, it does definitely. Yeah, gout would stop me walking. If you get it in the shoulders and the arms, phew, my friend had to cut my food up a couple of quite a few days, so that I could eat.