Interview 33

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 injected 2/month, indometacin, co-codamol & Lansoprazole.

Background:

Student, single, no children. Lives at home with mother.

Prefers to accept that the illness has just happened by chance; does not want to blame her parents.

I just cry for a little bit and then you think to yourself, you know, 'This is really unfair. I don't understand why it's happened to me.' But then I think everybody feels like that at some time in their life. Everybody has that something that happens to them and you question why. And unfortunately, it's not very nice to say it, but that's just one of those things in life, it's you can't always justify things.

I like, I do like the way that people can be religious and say that it happened for this reason, it happened for that reason but I look at it more clinically than that, probably because of my arthritis and because I'm involved in science more than I am in religion with the doctors and everything. Unfortunately there's no explanation for these things. Sometimes people just get illnesses and there's nothing you can do about it but it does help to have a good cry although it can't go on for too long. I always feel that the crying's fine but it's the thinking and the, the emotional side that can, can drag a little bit. So I tend to just try keep, quite localised and yeah, I do have a bit of cry and sometimes I don't even know why so you kind of make up a reason [laughs] and you cry about that.  

I would really want to know where it came from, what started it in me, because nobody's ever told me that. I don't know if they don't know or if they haven't bothered to find out. That's what I'd like to know. Not, not because I, so I, not so I could blame anything on anyone. I think it's very easy to blame it on an accident or some, or one of your parents for giving you a bad gene. Blame is one of those things a natural reaction to something. But I wouldn't feel that, I would like to know scientifically what it is about me that means that I have it because I've always been interested in science so it goes along with my technology thing. I like that kind of thing. I'd like to know what it is in me that sparked it off. Just out of curiosity I suppose. 

Had side effects from taking methotrexate and wanted to stop taking it, but her consultant was...

And I went into [Hospital] because they wanted to sort out the methotrexate problem, because they said, 'You can't come off it because we don't have anything else to give you'. And I said, 'Well I'm not taking it any more because'' It went on for about a year the sickness thing and nobody really cared. I mean, I cared and my parents cared but the doctors they weren't really too bothered. They said, 'If you're not on it then you know you're, you're not going to be healthy enough'. And, I didn't care. I didn't care if I couldn't do anything, I just didn't want to be sick any more.  

So I went in and various different doctors came to talk to me 'cos I was under Professor [name] at [Hospital] and she has a huge team and they all came to talk to me, all of them. And then she came as well so, you know, the big top dog, and she spoke to me and I said, 'No, I'm not taking it. You can't make me take it because I don't care if I'm, if I'm under 16 I'm not going to take it'. And I just said, 'No'.  And they said, 'Well we'll give you anti-sickness tablets'. And I had tried those, they didn't do anything. I said, 'But they don't work so I'm not taking it'. So they eventually [laughs] sort of, they listened to me.

I'm very involved in how it's managed and I make it my right to be involved as well. I think some people, I wouldn't say they get walked over but they feel that they don't have the right to say no because it's difficult, I must admit when you've, if you have got quite an over, over-bearing consultant, I mean my consultant she has to be strong and she has to be pushy because she has to fight for a lot of people to get the medicine they need, but that also in turn means that you have to be strong and have to be willing to fight if you disagree about something. So, it is difficult but you just have to have the strong will to do it. And you pick it up along the way.  

Describes her involvement in a clinical trial.

I get every choice. I get she, she will ask me, this is my consultant not my GP or anything. She'll say to me, she mentioned the new drugs to me and she said, 'Would you be interested in it?' And she, she told me that it's, it's not been tested before so there could be long term health risks of cancer mainly, I think. Or it could, certain things like kidney failure and things like that that it can cause. It doesn't mean that it will but it can. And so she always asks me, you know, am I happy with it, would I like to try it? And more often than not I say, 'Yes' because if it will benefit me now then I will take that risk because it does sound a bit morbid, we all die somehow. And if it will help me now I'm not going to live in fear of what it will do to me later in my life. 

And I'm not if sure if the adalimumab might be a trial as well. I'm not sure. Because it's new I think they may be monitoring me on it but I know I've answered questionnaires and things on it but I'm not sure if it's an official clinical trial or if they just have to monitor me on it because I'm taking a new drug.  

Found Indometacin the most effective NSAID in reducing swelling and early morning stiffness.

And then they'd put me on Indometacin which I'm still on now, which is I think the best drug for me. I don't know how it works for other people but it got rid of the stiffness, it got rid of the swollen joints and I could get up in the morning and do whatever I wanted straight away. It got rid of all of that. It wasn't so good of getting rid of the sort of, the general day-to-day pain. I still get localised joint problems but it took away all those sort of feelings of, 'Oh, I can't do it today'. And that was great.

But I wish I'd had known about Indometacin actually [Laughs] that's a great drug, I wish I'd have known about that. I suppose I couldn't have it when I was very young but I'm, I'm glad that I found out about it and I wish I'd of sort of been on in all that time because I might have been able to get to school every day and just had a, a bit more fun at that time.  

No, I, I'm still on Indometacin 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.

Injects Humira Anti-TNF into her leg every two weeks but one batch she was given was out of date.

I inject it every other week and it goes into my thigh or my stomach I'm told but I'm not going to try that because that makes me feel ill to think of it there, so in my thigh and I alternative the legs and that's it's, it's strange injecting myself because it's something I've never done before but it's all pre-done in a, in the syringe so you just take the lid off and remember to squeeze the air out because the time that I didn't gave me a big bruise in my leg.

It was funny, I had it all ready, just about to inject and I checked the expiry date 'cos I remembered the rheumatology nurse saying, 'Always look at the date, look at the name and look at the date and make sure it's the right thing you're putting in your leg'.  So I looked at the date and I thought, and it was something like the 30th of the 4th 03. And I thought, 'That's fine'. And then I thought, 'Wait a minute, it's the 5th'. And I thought, 'Well, I don't know what to do. I don't know, do I take it?' I looked in the fridge, that's all I had. And I thought, 'Do I take it? Do I leave it?'  

So I phoned up to check and my rheumatology nurse said, 'Don't do it. I'll phone the pharmacy.'

Having taken medication for twelve years she saw it as 'a way of life'.

And how do you feel about taking sort of the drugs long term?

It's not a problem for me. I'm used to it but also I've, I've grown to like them because they're good for me. It's annoying when you have to keep, keep an eye on them and like I say when you're going on holiday you have to make sure that you've got enough. But it's just a way of life, it's a part of my life and I find it strange to think of going to bed and not taking any tablets. That to me would be the strangest thing in the world because that's what I do. I get ready, I sit down, I get my tablets ready, I get my water ready and I did that last thing of all. And then I put my splints on and it's just so much part of who, my routine now that to not do it would be alien to me. 

Do, you don't ever forget?

No. Never. Never forget. [Laughs] Forgotten probably once or twice in about 12 years and you know about it when you forget. So, you learn not to. But they're right, they're there by the side of my bed so it would be very difficult to forget them.

Returning home after her hip operation was challenging and she had to get used to being...

I came home on Monday, which was very strange, I felt like I was  like I'd been I don't know, I wouldn't call it prison but it, it's very isolating to be in hospital and not see people and not be out in the street and  because it was in a big city, I came out and people walking everywhere and cars and I felt flustered and panicked and a bit confused. But that's normal I think when you came out of hospital especially if you've had that kind of operation. 

You tend to feel a bit sort of shaky. And so I got into the car and I came home and  had a mince pie [laugh] and but even when I got home I thought I would feel better, but I don't know what I was expecting to feel when I got home. But it wasn't the same because everything I'm used in the home is more like a challenge 'cos when you have you're hip done you can't sit with your knee higher than your hip joint. It has to lower otherwise the angle's all wrong. So that was difficult making sure that all the chairs were high and just the kind of thing that you don't really think about. 

So 'cos I have a high bed and a high chair, at my computer in my room and I stayed in my room for most of the time which again was quite isolating. But it was difficult but it was also I think necessary to sort of heal myself inside, as well because I'd, I'd been used to a different way of life when my hip was bad, used to not walking very hard and not using the bus and having someone with me all the time. And being on my own was quite lonely and, and my boyfriend would come around a lot and see me and that was really nice to spend time with me, and take me out in the wheelchair. But I think it was necessary  to get used to myself a little bit, because I think I was depending on other people too much.

She wishes that she had done more exercises because she has lost some movement in her shoulder.

And so when I'm on the drug it's, it's not about taking away the pain but it gives you energy and when it gives you energy you have energy to exercise. And exercise will take away the pain, it'll make you stronger, make your muscles stronger. 

But also, I would also advise to, to do what they ask you to. You know, do, do your exercises and I know it's laborious and you have to fit it into your day but it's, it's really, 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 so you're damaging it. And just keep working through it because it will get better and you'll see the benefits of it. 

I wish I had known that my exercises were so, so, so important because I didn't exercise my left arm properly and now I can't tie my hair back and I can't wash my face with it. And a lot of things that I would be able to do if I had of, have kept on with it. Because I don't really remember anybody saying to me, 'You'll lose the movement in your shoulder if you don't exercise it.' Because you don't really want to scare people in saying that kind of thing. But I think sometimes they need to be told.

Talks about the benifits of Tai Chi.

I did a course Tai Chi for arthritis in London. I went to Swiss Cottage which is quite a nice area and I did Tai Chi there with a German lady and she, I think she lives over here now, but she's from Germany and she's, she was great. She was really lovely and she doesn't have arthritis herself. But she did a course taught by a man, I think he's from America, Dr Lamb, and he came up with the idea of Tai Chi for arthritis because Tai Chi's good for everybody. 

But for arthritis it's difficult to do everything that everybody does because there is a lot arm raising. But the way you do it is if you can't do something in your body, you do it in your mind and I've always said that's, to be honest that's how I seen myself. In my mind, my wrists do bend and they do move and they do look like other people's.

But in actuality they don't, and the Tai Chi was, was really great for that because it, it really does show you that we are all the same inside and I think it's easy to forget about that because we do become preoccupied with our physical selves, our self image and our body and, like I said, the material things about ourselves and you do forget that inside, we're all the same really.

And it's, it's nice because you focus on that and it's a lot of energy and it's all to do with a, your Chi and positive energy and your negative energy and the way it flows through you and giving off energy. And that was really good and I'd recommend that to to anybody, not just with arthritis but to anybody because it really does I never quite got to the stage where I felt that energy rush but I feel that I was getting there, I was starting to feel something. 

Has learnt to accept her changing body shape and no longer feels self conscious.

And I, and I used to feel a bit weird when I, but I had a bad hip so you could tell there was something wrong with me because my right leg had become two inches shorter than my left and that's where the bone had worn away and the ball of the, the hip joint had sort of, it had worn away so badly that my leg had risen up because that sort of keeps it in place. 

And I had a really bad limp which I felt really self-conscious with, more self-conscious in fact than being in a wheelchair with it. I felt that everybody was looking at me 'cos I was walking wonky whereas in a wheelchair, I don't know, I just felt like people, I think sometimes people make a conscious effort not to look when you're in a wheelchair which, you know, I don't mind, you can look at me, I'm, I'm not too bothered.    

I think when you do have arthritis and you do look different I'm aware that my wrists look different to other people's and my head is different because of my neck and I'm, I'm very much aware that I don't look like everybody else and I think that's why I can cope with, you know, having a different kind of body I think. If you don't have the kind of disability then you think, 'Oh my nose is big' or 'My bum's big' or something like that. But when you have arthritis you think, 'Yeah, I'm different. Everybody's different but there's nothing I can do about it'. 

So I don't care, you, you, you make a choice to say to people, 'This is me and I'm different. And you either deal with that or you don't. And you know I don't have to know you, I don't have to put up with you so''  And I think you, you get to that stage eventually. At first it's difficult. At first I didn't like wearing tops that didn't have long sleeves because of my arms and, but now I think, 'Well, in all honestly people don't actually notice it' because in fact everybody does have different wrists. It's not like I look like a major freak or anything. So it's, it's absolutely fine.  

But you, you have to get it into your own head. You, it doesn't matter how many times people tell you know, your friends and family they tell you, 'It's OK, you look fine', until you go out and meet people and then they don't notice you think, 'Yeah, they're right, they're telling the truth'. I mean, obviously you don't think they're lying but you, at the same time they're not going to say to you, 'Yeah you look different' because they know that it's going to hurt you and they know that it will be difficult for you. So I think you just have to get out there and find out for yourself.  

Health workers need to be gentle and to allow plenty of time for the consultation.

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 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.

And also realise that a few minutes in each consultant, the consultation isn't enough. I know they're busy and very busy but  listening is very important I think. I, I'm lucky with that, my consultant I can spend quite a lot of time with her and she listens to me quite well. But I can't imagine what it would be like if I only got 5 minutes to see her. Nothing would ever happen. I wouldn't ever get anywhere. 

Her energy level has increased since taking anti-TNF alpha medication.

And feeling as good as I do on it I, it doesn't take the pain away, it, go away, it, it, it doesn't do that. The, the pain has not gone but it does give you more energy. It's, it's very strange. It's, I suppose I feel like I have as much energy as other people would because I think when, when you have arthritis, if you have it for a certain amount of time, energy levels go up and down naturally anyway but you do sort of, you get used to not having much energy.

Not as much I suppose I would say, not, it's not much but you get used to not being able to walk as far, you get used to it. Then on this new drug I suddenly had all this energy and I was sort of jumping around and I had too much of it at first. And, and now I've got used to the level and, and now I can tell when I'm ready for a dose because my level has gone down a bit. And just going up the stairs at night, just feels, ohhh, you know. It just feels like a little bit too much. And so when I'm on the drug it's, it's not about taking away the pain but it gives you energy and when it gives you energy you have energy to exercise. And exercise will take away the pain, it'll make you stronger, make your muscles stronger.  

Her sex life with her boyfriend was difficult for some weeks after a hip operation. Otherwise she...

Obviously when I had my hip replaced I had to lay off of the physical side of the relationship for at least 6 weeks which [Laughs] I think maybe for my boyfriend was a bit annoying but for me I, I wasn't too bothered. I wasn't really feeling like it at the time. But apart from that it's, it's not really been a problem. Obviously some things I can do, some things I can't. We're not all gymnasts so but like I say, that's, I don't think that necessarily just applies to people with arthritis. And I do feel that sometimes you're just not in the mood for anything like that. But again I think that's normal anyway. And I think I'm lucky that my boyfriend's so understanding about those things. He understands that I'm very sensitive and I, I can't be roughed around too much and he understands that if I'm in a lot of pain then I'm in a lot of pain and all I want to do really is just sort of lay around and watch TV and that kind of thing. So it's not been a problem at all, I wouldn't say. 

Maybe you'd have to ask him about it as well. But no he's never complained of anything and neither have I so I would say that's all fine. Yeah, like I said before, the only thing was just before my hip was done again that was just like, it was quite similar to just after. It was very difficult to do anything like that because it was quite painful but on a normal day everything's fine. So I wouldn't complain about it at all.
 

She felt depressed for much of secondary school but has now learnt to focus on a series of goals...

Yeah, it has in, I went through a very I think, I've already mentioned quite a negative phase, I suppose I would say. I think, 'cos I used to feel depressed but would people would say, you know, “You can't be depressed when you're, you know, 13, 14 years old”. Which I suppose is true but in another sense, you know, when you've got, when you're, you've got a year and a half off school because of this neck pain that won't go away I don't know what else you would call it if it's not depression. I used to feel quite negative and I used to you do go through the period where you question why and you still, I always get it sometimes, I get one of those days where, it's usually that little thing, that one little thing that pushes you over and it'll be something like, you're getting something out of the fridge and you'll drop it and that will just be the last thing that you can bear to put up with and then you sort of, I tend to just flop [Laughs] against the wall or sit down. 
 
And I went through that for quite a long time I think. Probably all the way through secondary school I felt quite oh, it's difficult to really describe it. You feel, I suppose quite bruised in a way and you feel like you're just getting knocked about by the disease one way or another. It's, there's always something, there's always a joint that hurts. You get rid of, I got rid of my hip problem and then my left knee started to hurt and it's it feels like it bounces from one part to another and when, when you don't have anything else to focus on, I'm one of those people that have to have something else to focus on, and, which I didn't in secondary school because really you're not thinking about career at that age, you're just, you're supposed to be having fun and, and growing up and I wasn't. I didn't feel that I was really doing that, I felt like I'd already grown up because I had to grow up quite quickly and deal with doctors and injections and the possibility of operations and the whole hospital thing. And grow up in the sense that I had to look after my body. I couldn't, I can't be spontaneous, I have to have tablets with me every night and you lose those things, so you grow up quite quickly. 
 
And I felt that in between that growing up time and actually the time that I was allowed to be an adult I didn't have much else to do, much else to think about and it, and it does get you down quite a bit. And even though you're with your friends sometimes and you, you're having a good time I've always felt like they, they can see you with your arthritis but the way they deal with it is, I should imagine this is how I deal with things, they go home and then they, they focus on something else and they forget about it. And I know that they love me, you know, they're my family and my parents and my friends but then they forget about it. But I come home and I'm, and I'm still doing it, I'm still living with it. And so for other people it's easier to deal with than it is for me obviously, because I've still got it and I'm always going to have it and I used to feel that it was, I wish that I could do that. I wished that I could go home and put it away, put it to the side and just not have it and so that was quite difficult to get through. I don't really know how I got through that actually, that was I used to go through those feelings when I'd had my hip done because I used to see, people would come and see me and, and they'd be happy and they'd be, you know, keeping me up but I could tell that they were sort of a little bit frightened for me and obviously sad for me that I was in, it wasn't really pain it was just discomfort. And, I used to think I wish I could do, do what they're doing at home and put it away and not have to deal with it.