Jill

Age at interview: 53

Brief Outline: Jill has had two kidney transplants. She takes 200mg of allopurinol every day, and also eats cherries. She has had four attacks in the last 12 months and finds Reiki helpful to manage the pain.

Background: Jill is divorced and lives alone. She is retired, and previously worked as an Infeeder for a manufacturing company. Ethnic background/nationality: White English.

More about me...

Jill’s gout started in 2008. She went to bed and woke up to discover that her feet were sore and swollen. She tried to get out of bed and found that she could not walk because the pain was unbearable. Jill telephoned a friend, who took her to the local hospital. She was diagnosed with gout by a doctor, who gave her colchicine tablets to take.
 
Jill experiences side effects of sickness and diarrhoea when she takes colchicine. She was told about the possible side effects when the tablets were prescribed. She feels that it is difficult to choose between experiencing the pain of gout or the side effects from the colchicine tablets. If she takes colchicine her attack will usually last for about two days, but if she does not take it the attack usually lasts for four or five days.
 
Jill has had two kidney transplants, and her renal consultant told her that renal patients are prone to getting gout. Jill has also had a quadruple heart bypass and a parathyroidectomy. However, although she found the pain of these procedures uncomfortable, she felt that it was manageable, whereas she feels that gout takes her ‘off her feet’ and makes her feel ‘terrible’.
 
Jill and her consultants discuss and adapt her medication to try and manage her conditions in the best way. For example, she takes furosemide (a diuretic) as and when she needs it rather than on a daily basis, because it could increase the frequency of her gout attacks. Jill was also prescribed allopurinol to take every day, and the dose she takes was jointly decided by her renal consultant and her rheumatologist.
 
Jill feels ‘disabled’ for a few days every time she has an attack. She usually volunteers at a local hospital, but when she has an attack of gout it prevents her from doing that activity. She also gets irritable and weepy when she has an attack, because of the constant pain and the fact that she is unable to do things. She spends her time on the sofa and friends and neighbours pop round to help out and make her cups of tea or bring her shopping. Gout now affects Jill’s hands as well as her feet, so she often finds it impossible to open jars or bottles, and it is difficult to get coins out of her purse when she is shopping. Other everyday tasks like making a bed are also hard work for Jill, and driving is too painful until the attack subsides.
 
Jill has to wear large flip flops when she has an attack of gout, because she cannot get any of her shoes or slippers on her feet. She finds it difficult to walk, and her balance is affected because she shuffles. This results in Jill getting bruises from banging herself on doors or furniture.
 
Jill has not made any major changes to her diet since being diagnosed with gout, but tries to eat some foods in moderation. She read a magazine article that suggested that cherries were beneficial for people with gout. Jill decided to try eating cherries, and believes that they have had a positive effect on her gout. She also sometimes uses Reiki crystals to help with the pain of gout.
 
Jill has had four attacks of gout in the last 12 months. She takes 200mg of allopurinol every day. Since she started taking allopurinol and eating cherries, her uric acid levels have gone down. She has blood tests every six weeks and checks her uric acid levels at the same time. 

When Jill was diagnosed she thought that gout was caused by rich living. She then found out about uric acid and that gout was more common in patients with kidney problems.

When you first found out that you'd got gout, what were the reactions of other people around you when you told them?

Well to be honest with you I think my brother laughed, and said, "Isn't that a rich man's disease?" and I'm like, “Well I've no idea”. And he was laughing and he was saying, “Yeah, it's all that cheese and wine you have”. Well, I don’t say I don’t have a glass of wine, because I do, but it's not constant and cheese, we don’t eat cheese, well we do but not that often. So I was fed up of the stigma of gout, it's an old man's disease, so I asked a friend of mine who lives over the road to get it up on the laptop, and she had a look at it and did a bit - got a bit of information off for me, and apparently what it says on the laptop now is it's nothing to do with an old man's, you know, cheese and red wine, it is uric acid and it's a build-up of uric acid. And then when I looked further into it, and I told one of the renal consultants they said renal patients, uric acid build-up, quite normal. So for me, along with everything else that’s happened in the past, it's something I know I will have to live with, but I am very aware of my uric acid, so now every time I have my bloods done, which is every six weeks, I always ask what my uric acid is.

Jill takes allopurinol every day, but also believes that cherries have made a difference to her uric acid levels.

Now I didn't know anything about uric acid, anything about gout or anything, so obviously you tend to look books - read books, get as much information as you can, and somewhere along the line I read that cherries were supposed to be very good. I quite like fruit so I'm lucky, so to prevent the gout from coming because you - it's a silent creeper, you never know when you're going to have a gout attack, you go to bed normal and you wake up and you can't walk. You spend the rest of the day, a couple of days, until the gout goes, on the sofa, or at least that’s what I do. So it makes me immobile, it makes be disabled, if you like, for a couple of days. So obviously I've got the colchicine in for when it's a very bad attack, but like I say there are side effects to that. I take the allopurinol as a preventer on a daily basis anyway, but also I found that just simply by eating a handful of cherries a day, that also keeps the gout away. 

Jill takes colchicine when she has an attack, but finds the diarrhoea and sickness difficult to deal with.

I can remember coming home and getting on the sofa and making myself comfortable, and just kept popping these colchicine, and by late afternoon the unfortunate side effect of the colchicine, and it happens to most people I believe, is that you can get diarrhoea and sickness. So then you - I find myself asking the question, "Do I take the colchicine and get rid of the gout?" because it does actually get rid of the gout, or do I grin and bear the pain of the gout, and not have the side effect of the diarrhoea and sickness? So it's like you do find yourself choosing - what's it going to be, the pain or the other side effect? 

Jill feels that there is good communication between specialists about her different health problems, including gout.

I have a renal doctor, I have a gout doctor, I have a heart doctor, they all three speak to each other, and I'm in the middle of them all, and it's just - it's like always fine tuning of a car, tweaking this, tweaking that, to keep things running. 

So you feel that the communication between the different experts is quite…?

Definitely, yeah, because you - whichever doctor I see I always have a letter back, and you can see that they're clearly talking to whoever about me.

Jill sometimes finds it difficult to get money or cards out of her purse when she is shopping.

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.

Jill feels lucky that her friends and neighbours understand that the pain of attacks affects her mood.

Well luckily the people that come to look after me as it were, they know that I can get - it does, it makes you irritable because it's painful and it's - it's uncomfortable and you want to go to the loo but you know that simply just by getting up and shuffling to the loo, it's like going to be a main thing to do. And it's going to be painful to do. So people do come and I am ratchety, but they know it's because I'm in pain. 

Jill has very supportive friends and neighbours who help with everyday tasks.

I have got a good support system going here where I live, and everybody is aware about my conditions and aware that I have gout, so if they don’t see me, then they bob over and it's like I'm usually on the sofa, and it's - they’ll come in and they all see that I have cups of tea, see that somebody makes me a meal for the day, and just generally looks after me. But having gout, you can't have anything on your feet because it's painful, not even a little sheet cover, because it's so painful when it's on your feet. It also has gone - because I saw a doctor at [the hospital] a few months ago - into my hands now. That again is very disabling for me because I can't undo jars. A typical day is maybe undoing a jar of beetroot or undoing a jar - or even a milk bottle, unscrewing the top off the milk bottle, I have no - I'm unable to undo anything in this house. I usually leave the things on the window and the guy next door will come and undo them for me because he sees them getting them lined up, and he knows it's a sign that I've had a go, found it impossible, so, “It's waiting to be undone when you’ve got a moment please”. So it's just - I would say gout is very disabling to anyone.

The pain stopped Jill from walking properly. She had to wear larger shoes and shuffle round the house. She often bumped into things and ended up with bruises.

I could just barely stand up and I couldn't wear the shoes I always wear. I had to borrow a pair of giant flip flops because that was the only that would be comfortable around my foot, and it was a shuffle movement which - because it was so painful I shuffle and wobble, which means I bang into doors, and to - and my legs get bruised because I'm banging into things because I'm not walking straight. So I get lots of bruises with gout and very painful gout. Like I say the shoe, can't wear any shoes of my own, they have to be transferred to - it's actually a friend of mine's - what do you call them now, toe…the flipper type shoes, so they’re wide open.