Sara

Age at interview: 21

Age at diagnosis: 12

Brief Outline: Juvenile chronic arthritis diagnosed 1990. Initially NSAIDs, then methotrexate but nausea & then oral steroids from age 15. Finger tendon repair & hip replacement (01) currently Anti-TNF Humira (adalimumab) injected 2/month, indomethacin, co-codamol & lansoprazole.

Background: Student, single, no children. Lives at home with mother. Ethnic background/nationality: white British.

More about me...

Sara was diagnosed with juvenile chronic arthritis in 1990. Her initial medication was NSAIDs, and then methotrexate but she experienced severe nausea as a side effect so was put on oral steroids from age 15. She has had to have a finger tendon repair & hip replacement (01). Currently she is on Anti-TNF Humira (adalimumab) injected twice a month, indometacin, co-codamol & lansoprazole.

 

Her arthritis and the physical problems she has experienced with it, including the treatments, her stays in hospitals and the side effects of some of her medication, have all contributed to the disruption of her education. She had a home tutor that was arranged through her consultant, but that was only for four hours a week. Her GCSE years were disrupted by her medical problems but she managed to retake these exams at a later stage. She couldn't do her A-level's because she had missed too much of school. She went on to do an advanced GNVQ in Information Technology but it took her longer to complete it than normal. Having to interrupt her studies has been very frustrating for her. She says that she enjoyed her studies because it helped her feel generally better about things. Now she has applied to do an Executive Public Relations course.

 

She says that with her current medication she has more energy to do things like exercise. She attended a Tai Chi course for people with arthritis and really enjoyed it. Sarah is hoping that the new drug will help her to do her new course and is looking forward to get a full time job afterwards. She feels that it is important to try and be as independent as she can. She does not like to ask her parents, boyfriend or friends for help.

 

During her secondary school years she went through a bad emotional period. She felt depressed and thought it was unfair for her to have arthritis and to experience pain and other physical problems that require medical intervention. She feels that she had to grow up rather quickly in order to cope with operations and treatments. One thing that helped her was to focus on the things she can/could do but admits it took her time to come to terms with her illness and with her bad emotions. 

 

Sara said that she was too young to worry about being diagnosed with arthritis. She felt her parents were more concerned than she was.

I’ll start at the beginning. I was about 9½ and I had a swollen left thumb and so I went to my local GP who wasn’t there and I saw a locum instead and he said that it looked like arthritis which was a bit of a shock to my parents. I was young so I just thought, “Oh I don’t really know what that means”, so I didn’t really mind too much. And, and he referred me to the consultant I still see now at my local hospital. And the first thing she asked me to do was put my, both my arms straight and when I did that I noticed that my left arm didn’t go straight, but my right arm did. 

 

And so I had it, I had it, the arthritis in my thumb and my left elbow and it was strange to me ‘cos I’d never really looked at my arms like that, I’d never said, “Oh, can I put my arms straight?” or anything. So I just, and again I still thought it was just one of those things, it didn’t really mean much to me as a child, I’d heard of it and I think I knew what it meant but it didn’t really impact me too much. It sort of, I just thought, “Well that’s OK, I can live with that. That’ll be fine”.

 

When Sara had an eye exam her doctor looked for inflammation. Sara was also asked to read from a chart.

And what’s the eye doctor looking for?

 

He is looking for cells in my eyes which are an indication of inflammation. I’m not 100% clear on it anymore because it’s such a long time they explained it to me but it can cause inflammation in my eye and lead to blindness. So I have to keep an eye on it, if, if it swell up, if it goes red, if, if vision gets funny, I have to make an emergency appointment because they have to treat it with steroids very quickly. But it’s always been quite yes, it’s been fine. 

 

He always says that, “I can’t see many cells in there; I can see one or two cells.” So obviously the amount of cells indicates the amount of trouble you’ve got going on in there. But that’s just to keep a check on it really and that’s [uh] once a year. Because they check on it once a year and no more than that because it’s one of those things that if it happens, it happens and you have to go in straight away. So any more than a year it’s just a waste of their resources. But yeah, I’m sort of roped in with all the other people that take ages in there because they have to have loads of stuff done, so. 

 

And then I read out the chart as well and they compare to see how my eyes are getting on. Which is quite handy because I do wear glasses. So they can check on my eye progress, see if one eye’s getting worse which, I think one of my eyes is worse than the other but I think now the other one’s catching up a little bit. So they might even out someday.

 

Sara described indomethacin as 'the drug that I believe gets me up in the morning'. This anti-inflammatory worked better for her than anything else she tried.

I’m still on Indomethacin right now. It’s my anti-inflammatory. It’s probably something that I’ll always have. It’s the drug that I believe gets me up in the morning. It means that I can get up and feel great. I would never want to come off that unless it was posing a serious health risk in which case I would be deeply saddened because it does quite a lot for me. And I could probably come off; I don’t know if I could come off my strong pain killers at night. It depends on the conditions. In this country with the humid, the humidity the way it is I don’t think I could sleep at night with my arms being, they’re quite restless. Even though they’re in splints they get quite uncomfortable. So, yeah, I stay on that and I probably will stay on that as well. It’s great. It’s an anti-inflammatory it works better than anything else I’ve tried.

When Sara was in a wheelchair she worried that her boyfriend might not want to be seen with her. He didn't mind pushing her around and people didn't stare at Sara as much as she thought they would.

Christmas 2001 that I had it done, just a few weeks before Christmas I, I did think, “Yeah, this is getting bad now” because I was in a wheelchair, my boyfriend had to take me around in a wheelchair to the shops and things. And I knew I’d be out of it so it wasn’t too depressing but it was really cold, I’ll say that. I don’t know how people do it in a wheelchair. It was freezing. I had to have a blanket on me at all times, a blanket and a hat and a scarf and gloves and, and that was strange. I look back on it and think that was quite tough but at the same time I think, I think of it fondly because it, it means something to me now because I’m not in a wheelchair and it means that, you know, I, it’s something to think about, you know, “Don’t be lazy, don’t forget about your exercises”. Because, you know, like that’s what can happen. And, and my boyfriend liked to, he liked pushing me around in the wheelchair He was like that for some strange reason so he didn’t mind too much. 

 

And I was worried about that, I thought, you know, “Is he going to feel funny because, does he want to be seen out with me in a wheelchair?” But he’s great like that; he’s got no issues about that. I mean I have no issues like that, I don’t care how people see me because they don’t me so it doesn’t matter to me I, that, actually I was surprised people didn’t really look at me funny in the wheelchair. They, they talked to me like they weren’t sure whether I was mentally disabled or physically disabled and they would say to me in shops, they would speak clearly and loudly at me when they were telling me how much to pay. And I would say, “Yeah, OK”. And they’d think, “Oh, she’s all right, then”. And children didn’t really stare either. I think sometimes on TV they portray it like everybody stares at you and that’s what I was preparing myself for. But it wasn’t so bad. 

 

Sara buys children's clothes because she is small and they can be easier to put on.

Dressing I don’t necessarily avoid anything when I’m buying clothes but some zips I find difficult. If, when I try and button up jeans can be a little bit difficult as well but what I do is I try them on and if I can’t do it it on then I just don’t buy it. Everything’s different. Some buttons are really easy to do, some are really hard. Some jeans are really easy to get on. I don’t really understand how that works but yeah, it’s usually not a problem. What was I going to say? I’ve lost it. 

 

Yeah, when it comes to buying clothes it can be quite difficult because I’m small. That’s the only problem that I have with buying clothes. Because of the arthritis I’m quite petite and I find that children’s shops are usually the best places to go. And it’s quite good ‘cos these days children’s clothes are quite similar to adult clothes so you can get quite good plain jeans And it has a lot of lycra in it as well which is great because when you have arthritis and you can’t pull your jeans up so well if they’ve got lycra in it’s much easier to get them on and they’ll have, some jeans I got from a, Tammy Girl, a children’s shop, have got popper buttons when you do them up. And they’re great because they’re absolutely no hassle at all. And then I wear a belt with it just to keep them done up. And that kind of thing, that’s actually quite good. I do like lycra in jeans ‘cos ordinary jeans are murder to get on because I’m not very strong with my hands so I end up with them stuck half way up my legs and trying to get them up further. And that’s the only problem I really have with dressing is, is pulling tight trousers up. I suppose it’s my own fault for wearing tight trousers. 

 

Certain things I have difficulty with taking off because of my left arm. I sort of have to drag it over my head because I can’t lift my arms up. But I don’t have any help in doing that, I don’t ask for any help in that, like I say, I like to try and keep it quite independent because I can’t have somebody there with me all the time helping me get my clothes on and off. So that’s, that’s quite good really. I think I’m quite lucky in that.

 

But I would avoid unnecessary buttons I suppose. If I could get a top that didn’t have buttons as opposed to a blouse that did, then I would tend to go for the one that didn’t because it just, I tend to do them with one hand. Even though I can reach with my left hand it’s quicker to do it with one hand but it can be a bit fiddly so I tend to avoid buttons where I can. But everything’s got a button on it somewhere I’ve found. So it’s not too much of a problem for me.

 

It is important to be gentle when examining people with arthritis. They can be in lots of pain to start with and being rough can make them feel worse.

Don’t pull people around so much. They, I know it sounds silly but my left knee was hurting quite badly and my consultant, as lovely as she is, really pulled around with it and it hurt so much more for months afterwards. It took a long time to get it to feel better after that. And I think they don’t necessarily realise that they pull people around a lot especially when you’re being checked over by the physio. These days they’re not so bad but when I was a child they pulled me around something rotten and made me cry, it was that bad. Just trying to find out where my boundaries were. And I thought, “That’s not fair, you can’t just…” Somebody that I don’t know just starts grabbing me and pulling me about, pulling my head this way and my leg that way and I think sometimes they need to realise that it’s not an ordinary person they’re dealing with, it’s not somebody who isn’t feeling any pain, it’s somebody who does feel pain and feels pain quite easily and quite sensitively. And I’ve got very sensitive skin anyway. You could sort of touch me anywhere and it would hurt a little bit. I think that’s the way I’ve always been. And they do need to realise that sometimes.

Having a hobby and surrounding yourself with 'happy things and happy people' can help you remain positive.

I know it’s easy to say and you’ll find your own way of coping with it but that’s another thing, find something, a hobby or something, like I did with my gaming, that you just throw yourself into and something that you do when you feel really, really rough and doesn’t just have to be at those times. But something that you can do, preferably on your own when it’s just yourself and you can really throw yourself into it and really love and enjoy it. And that’s really, really beneficial if you can do that because it will take you away from everything else. And it doesn’t matter how silly people think it is or how they, they look upon you for doing it, just do it anyway and make sure you love it and that will help.

 

And also keep positive as well even though it’s really difficult to sometimes. I definitely believe that if you’re positive about it and if you keep as, if, I think surround yourself with happy things and happy people then that can keep you feeling quite well as well.

 

Doing your exercises can make a big difference to your joints and improve mobility. It also helps if you avoid smoking and drinking alcohol.

I would also advise to do what they ask you to. You know, do your exercises and I know it’s laborious and you have to fit it into your day but it’s really worthwhile because without exercise then I may have lost a lot more of my joints. And I think it’s quite important, even if it hurts. Like I say, you have to try and fight through the pain and sometimes you have to know when to do that and when not to. If it’s a tired pain, then you’re not going to work through that but if it’s a pain from maybe after an operation and it’s hurting and it’s feeling stiff, you just have to go through it and exercise it as much as you can within reason not, not o so you’re damaging it. And just keep working through it because it will get better and you’ll see the benefits of it. And then when you feel good after that, when I was walking with my hip it was just, it was the best thing to be able to go and go shopping. And I couldn’t walk for very long but it was longer than I could walk for before and I didn’t have this limp that made me look like I was all lopsided. And I wasn’t in a wheelchair and it was it was a kind of thing that you forget about when you get well enough, you forget that you were ever in that bad place but when you fight through it and you, you do everything they ask you to because sometimes you feel like they’re just being a bit of a nag and getting you to do all these things. But they are very beneficial.

 

And I would also advise I know it’s difficult if you’re used to smoking or drinking but I’ve spoken to people about it and they’ve cut out alcohol completely and the effects have been mind-blowing. They’ve, they’ve felt the arthritis completely ease up and likewise with smoking as well.