Lucy

Lucy has systemic arthritis. When she was 7 she had a very sore neck and could not move it from side to side or look up. As Lucy got older her feet and knees began to swell and hurt too. One day she was very poorly and had fluid around her heart. Lucy had an operation to make her heart better. Lucy’s takes medicine for her arthritis and the pain is nearly gone.

Lucy is 10 and has systemic arthritis. When she was 7 she had a very sore neck and could not move it from side to side or look up. As Lucy got older her feet and knees began to swell and hurt too. When Lucy’s arthritis was very bad she found it difficult to run around the playground with her friends. She also felt quite tired.

Lucy does not remember much about the doctors when she was younger, but she said that she remembers being quite tired and sore, and that she found it difficult moving. Lucy had an x-ray and an ultrasound scan. She said that the gel they put on her joints was cold and that she could see her bones on the computer screen. Lucy also said that she had a blood test at the doctors and remembers that it took a long time for the results to come back. When the results came back they said that Lucy had arthritis.

Lucy injects herself every day with anakinra. She injects it into her tummy. Some young people with arthritis inject medicine into their legs. Lucy explained that it is better to inject the medicine into her tummy because there is less muscle in her tummy and this makes it less painful. Lucy uses a normal syringe like a doctor, not an EpiPen like some young people. She takes methotrexate tablets on Friday and is never sick afterwards. She takes tablets to prevent her from getting an upset tummy.

Lucy hardly ever gets sore anymore. When she does get sore it tends to be in her neck. Lucy likes going to Cubs, gymnastics lessons and writing stories. When she is older she would like to be a primary school teacher.

Lucy injects her stomach with anakinra. She prefers to inject herself because she can control…

Age at interview 10

Gender Female

Age at diagnosis 7

Anakinra OK and that’s the one that goes in your stomach?

Yup.

You mentioned that you had it in your leg before.

Yeah

Why did you put it in your stomach now rather than have it in the other leg?

Because if there is, there’s less muscles in your stomach and then it doesn’t hurt as much.

In this, up here, because there’s more fat.

OK so on your, the top of the leg, on the thigh?

Yeah

And when it comes to your stomach whereabouts in your stomach do you put it?

In just in the middle not like near my belly button whatever.

Not near your belly button?

No just like the two sides.

OK. I’m assuming that somebody shows you how to do the injection? Who was that?

It was our, I can’t remember the name, it was my nurse. It was like she showed you how to do it but Mum, she showed Mummy how to do it first.

OK so did the person come to the house or did you have to go to them?

And I was in the hospital then so in the end they came here.

A lot of young people are injected by their mums or sometimes dads so I was surprised to learn that you know you’re ten years old and you’re doing it yourself. So I was wondering if your mum or dad had ever injected you?

Yeah Mummy injected me like about three times and then that was it and I prefer to do it myself.

You mean you decided? Is it better that you do it yourself?

Yeah

Why’s it better?

Because I just can get control of where it is and all that so I

Are you, who’s better? You or your Mum at giving these injections?

Me

Who hurts less?

Me

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Lucy went to a breakaway camp with her rheumatologist and thought it was funny watching her…

Age at interview 10

Gender Female

Age at diagnosis 7

So you go to camp. What is this camp can you describe what it is?

It’s just a camp where the doctors and nurses go and other people.

And it’s a camp so does that mean you stay in a tent?

No I don’t, we stay in a hostel.

How long do you go for?

We went for two nights.

And what do you do?

We do like activities like rock climbing and then abseiling, canoeing and bouldering and stuff like that.

Can you do all those activities?

Yeah

Doesn’t ache, doesn’t hurt?

No

How often do you do this?

There’s a, it’s my first year at camp and we do an activity each day or maybe two.

What do the doctors and nurses do?

They do the same activities.

Did they ever teach you anything?

No not really.

They never talk about arthritis or anything like that?

No

Are there other young people there?

Yup

What are they like?

Same

What do you mean the same?

They’re the same as me

And what does that mean? Does that mean they’ve got arthritis?

Yup

All of them?

Yeah

Do some of them have different kind of illnesses or problems?

No they have just arthritis.

How many boys and girls are there?

There were eleven at the camp.

OK and how many doctors and nurses?

It was five or something.

About five yeah OK. So you all stay in a hostel, do you stay overnight?

Yeah

What’s that like?

It’s OK

Is it fun?

Yeah

What makes it fun?

You make friends.

Oh wow. So you’ve come in making friends with people with arthritis? What are they like, arthritis like?

The same as mine.

So I mean I was wondering whether or not you had people in wheelchairs or whether or not you had people that

No they’re all like walking and all.

Have you learnt anything from them?

No not really

Can you stay in touch afterwards with them?

Yeah if you go to the other camps at all and meetings.

OK do you think you will?

Yeah

What was it like seeing your doctor outside the hospita

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Lucy feels a dull ache. When her pain is really bad it feels like somebody has stuck a…

Age at interview 10

Gender Female

Age at diagnosis 7

Is there a way of describing the pain and your kind of existence with the pain, the kind of what it feels like on a on a day to day basis?

it’s like a kind of, it’s like dull aching but it’s going to sound really strange but it’s like you can feel it at the actual root like it’s not just like a like a pain that someone’s kind of just hit you. You can feel it on the inside and you can just feel it sitting there. I doesn’t go away and there’s other times like when it gets, when it starts getting really bad, I can you can almost like you know that there’s erosion happening.

it’s almost it feels like someone’s stuck like a screwdriver into like the side of your knee and every time you walk you can kind of feel it grinding back and forwards. it’s a bit gruesome but, you know, it feels like you’ve got these things, jarry things sticking inside you. it’s not good.

I’m cringing listening to that.

Yeah, it’s nasty. it’s nasty.

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