Sara - Interview 27
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 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.
She was 9½ when she was diagnosed with arthritis but it wasn't until a couple of years later that...
She was 9½ when she was diagnosed with arthritis but it wasn't until a couple of years later that...
Right, OK. I'll start at the beginning. I was about 9 ' 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, I'd heard of it and I, I, 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, that'll be fine'. And then it sort, it took a few years to get as bad as it is now. I say bad, it's not as bad as it can be but is in most of my joints. I think I only really have a couple of joints that aren't affected and over the course of the years it spread to me knees so I think I must have been probably 10 or 11 then. And that's when it started to sink in a little bit that it was something a bit more serious and something that would be more difficult to live with. But I was young so again it didn't really bother me too much, I was still quite carefree.
Enjoyed meeting people but felt sad for children who could not join in with active play at a...
Enjoyed meeting people but felt sad for children who could not join in with active play at a...
But it's, I think life can be like that sometimes when you see your friends doing things that you can't do. But it's, I think it's like that for people who don't have arthritis. Some people aren't really good at sport, some people aren't good that these things so yeah that was the only thing that really disappointed me. It was, it was fun though, it was nice to meet other people like myself. I've never really been one for feeling quite alone with it because, because I'm an only child I, and I don't have brothers and sisters, maybe that's it because I should imagine if you do have brothers and sisters it's quite difficult to not be able to join in with them. But because it was just me and my dog [laughs], he was sort of like a brother to me, my dog, when I was very young my dog Fred. Because I had him, I never, I suppose there was never anybody around that was sort of there doing the things that I couldn't do. But it, it was nice to meet other people. I felt that the workshops themselves were a little bit too focused on the arthritis. I know it, it sounds a bit silly but it was, it would have been nice to have talked about other things as well.
Because we, we went to focus groups and we talked about, it was good feedback for the hospitals about whether, what the hospitals were doing right and wrong and did we really know about the disease, but I also felt like they were leaving out the rest of us because the arthritis is only a part of our, ourselves and like they were leaving out the personality part and the bits that we like to do and we went out on, on day trips and things, it was only for a weekend but we did go out on day trips, so I suppose that was the part, the rest of ourselves is how I put it, but sometimes I think even when you're not meaning to people can focus on it a little bit too much. That's why, when I meet somebody for the first time I rarely tell them about it straight away and I only do if I've been talking to them for a long time or if we're going to do something that maybe I'm not going to join in with. Because I do try and put across the rest of me first and leave that bit till last. Not because I'm afraid of what they'll think or anything but I just don't want it to be sort of the main point about me.
Explains the difference between a general and a localised arthritis flare up and describes how...
Explains the difference between a general and a localised arthritis flare up and describes how...
Whereas a localised flare up will be just my knee hurting or just my left arm hurting which is much more common for me. Lately it's been my right wrist has been a bit sort of twingey I call it. It sort of comes and goes. My left knee, sometimes from when I wake up it feels a bit sore and sometimes it comes on during the evening. In the heat wave it was awful because I would get, it wasn't necessarily a flare up but everything would feel tired by sort of late afternoon to evening, which is particularly annoying because when it's sunny I try and go out more and see my friends more. And if you get yourself moving, get yourself going, then you get through it but, you, it's quite annoying if you're around somebody's house and you're sort of hobbling around a little bit and even though they're my friends I still don't like to sort of hobble around in front of them. It can feel a bit awkward. But nobody ever says anything. I don't think they even notice to be honest.
So yeah we, so general it used to be very common for me a general flare up but not so more any more. But I would say localised flare ups are probably more common because, maybe because I'm doing more, I'm using my joints more. So it's more likely that I'll get just one joint or one particular arm will be hurting on a day. But usually more often than not I'll go to bed and I'll get up the next day and it'll be fine.
She refused to continue on a drug that made her feel sick all the time. Doctors eventually gave...
She refused to continue on a drug that made her feel sick all the time. Doctors eventually gave...
So I went in and various different doctors came to talk to me 'cos I was under Professor [name] at [hospital] and, 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, you can't make me take it because I don't care if I'm, if I'm under 16 I'm, 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 mean it was about three weeks I was in there and I had intensive physio and I had hydrotherapy in the morning and then at lunchtime, I enjoyed all that, that was all good.
And then they'd put me on indomethacin 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, so I was really glad I put up the fight to get off methotrexate because it was really worth it.
Had night time leg splints for her arthritis but found it hard to wear day time splints on her...
Had night time leg splints for her arthritis but found it hard to wear day time splints on her...
I do have problem with day splints. I've never found a single day splint that I can wear and actually use because they're usually hard plastic and they go up to, half way up your hand and I don't think you realise how important the palm of your hand is until you have it half covered with plastic. You can't use a mouse on a computer like that, you can't use cutlery like that, you can't write, like it, it's too difficult to write 'cos you haven't got the manipulation in your muscles 'cos they're held in place. And I think the doctor's a little bit idealistic in that. They think that they're practical and that they're wearable but I found I could only ever wear it if I wasn't doing anything.
But I never used to have night splints either so that might have been it as well. So I would recommend those to anybody with problems with their wrists. Keep on with the splints and definitely wear them at night because they, they're vital in keeping your wrists nice and healthy and flat.
My left shoulder's quite bad and that's, I see that as being really my fault because I didn't keep up with the shoulder exercises and I do regret not doing them but I don't beat myself up about it. I used to get really frustrated with myself but there's nothing I can do about it, there's nothing I can change. The doctors say that they could replace the whole joint but I wouldn't get the movement back in it. But I believe that if I worked hard enough I think I could get the movement back.
She felt depressed for much of secondary school but has now learnt to focus on a series of goals...
She felt depressed for much of secondary school but has now learnt to focus on a series of goals...
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, 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.
And, but I got through that somehow. I think what I did
Argues that people who smoke and drink do not deserve their free treatment. Says that people who...
Argues that people who smoke and drink do not deserve their free treatment. Says that people who...
And I would also advise I know it's, it's difficult if you're used to smoking or drinking but I've, I've spoken to people about it and they've cut out alcohol completely and the effects have been mind blowing. They've felt the arthritis completely ease up and likewise with smoking as well.
She talks about the positive effects of taking part in a Tai Chi class for people with arthritis.
She talks about the positive effects of taking part in a Tai Chi class for people with arthritis.
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, that's why.
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 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.
It's difficult at first because we're sort of conditioned in this society, especially now the science is so big and, and that nothing is physical unless you can actually touch it, unless it's tangible and it's there in front of you. So it's difficult to feel energy from within and to feel it flow, flowing through your body 'cos you never really think of it like that. So it does have to be done in quite a quiet place and somewhere where you can just focus on yourself. And so, I do find it difficult to do it at home but I, I keep meaning to go over the park and try it which really looks crazy with everybody else but I'm not really bothered about how I look any more. So I'm going to try that. So I, yeah I definitely recommend that to anybody.
She decided to eat everything but in moderation. She takes cod liver oil and vitamin D but...
She decided to eat everything but in moderation. She takes cod liver oil and vitamin D but...
I will eat whatever I want to eat within a certain extent. I'm not going to eat unhealthy food all the time. But if I want red meat I'm going to have red meat because there are certain things that I will put up with but I won't let it take away my food. That's, that's one thing that I'm always going to enjoy. I love restaurants, I love eating out and I'm never going to stop myself from eating. If I didn't have wheat and things I don't know, I mean I love bread. I absolutely love bread and I don't think I could do it. And if I can feel well and still eat those things, then I'll do it that way. I think sometimes if you cut out something you believe it will work and then it will. So for me I believe that eating everything will be fine for me so it will.
I take cod liver oil because not, I was never advised to by my doctor or anything but I read a study on an arthritis, I can't remember which arthritis website it was but one of the major charities for it and it said that they'd shown that taking cod liver oil regularly can prevent the disease from progressing and even reverse some of the, the joints that you've had, the, the joint problems, it can reverse them. So I decided, I take the strongest ones I can. I have to take Nutrataste because they repeat on me. I'm, I've got a very funny stomach like that. Everything repeats on me. So I have to take the Nutrataste ones and I take them at night still because even they repeat on me. So I have to take them right before I fall asleep.
So I take those and of my own free will I don't take any other supplements because I was on calcium but it wasn't doing enough so now I take Vitamin D and I have to have as much calcium in my diet as I can. I do change that part of my diet. I have as much calcium as I can and I, I try and eat as much you know, natural minerals and things like that but, like I say, I'm quite fussy, I vary from day to day. I love vegetables and things but I just, I can't have too much of anything really because I just get sick of it and some days I'm just not hungry at all. Especially in the heat, I hardly ever eat anything. But I don't take any, I don't take any sort of vitamin tablets or anything like that. I've always been of the opinion that you might as well just eat loads and get it from that rather than take it in tablets. So I do, I try and, I try and eat, eat my way through [Laughs] instead of having any supplements.
Because she had so many physical problems she was off school for a year and a half. She has...
Because she had so many physical problems she was off school for a year and a half. She has...
When I went back in Year 10 and 11 I didn't really attend properly. It was probably only three days out of every five day week because I was still having not problems with my neck anymore, the pain just went away on it's own, I don't know what happened with that, it just sort of, I don't know, maybe I grew out of it or something, I'm not sure, but I still had it quite, quite painfully in my knees and my left arm and I think it, it was still there in my neck but it, it wasn't as bad but, it was, it became sort of the problem that I have now where I can't turn it properly and quite painful when you're hunched over a desk and writing all the time. So I did miss out on quite a bit of schooling, I think.
But I did OK. I didn't do as well as I probably could have done but I went on from there to do an advanced GNVQ in IT which I really did enjoy and that sort of, that really helped me feel a lot better about things, because I didn't enjoy school. It wasn't, it didn't do anything for me. But also at that time, I'd been in [hospital] a few times, for, for the neck thing and also because I had been on Methotrexate but it wasn't, it was fine for a few years, it was really, really good for me and it helped but it, it didn't really help enough to get me to school but it did help with the pain and the stiffness.
I suppose it's natural really to hate homework. I don't know if anybody really likes it but that was one thing that I'm looking forward to doing without I suppose is because, when you have arthritis you get home and it does take longer to unwind than everybody else. I, I think sometimes other people do say, 'Yeah, well you know I have to unwind as well, and it takes, you know, you have to have a certain amount of time', but they don't realise that there's pain in everything you do when you have arthritis, that, from my experience, maybe not other people's, but even if you don't have it badly in a joint it still hurts to use it and, but you get used to it, you learn to ignore it or not feel it but it, definitely pain in every movement and, small or big and standing on your feet is a lot more difficult and just hanging around all day. I don't know, I'm hoping I'll get to sit down in my job. Looking for a place, you know, office with big comfy chairs so I'll be able to sit down a lot. But it does take a lot longer to unwind.
But I feel it was a long time before I really had proper treatment for it but because I was young they can't give you anything very strong because it can damage you in the long term and give you long term health problems; stunt your growth, that's why I was kept off steroids for a long time. And I think that it wasn't really until I was on Indomethacin which was about I think 15, 16, that kind of age when I got Indomethacin. So from, from 9 to 15 I was in a lot of pain but I, I didn't really focus on it too much because I was young and when I had that year and a half off school with my neck that, I focused on that a lot, that was quite difficult but when I was younger I, I remember, I was still playing with the other kids and still doing the whole skipping thing. I used to skip a lot and it, it wasn't too bad. But there were some things that I couldn't participat
Her sex life with her boyfriend was difficult for some weeks after a hip operation. Otherwise...
Her sex life with her boyfriend was difficult for some weeks after a hip operation. Otherwise...
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 advises other young people with arthritis to keep doing their exercises and to give up...
She advises other young people with arthritis to keep doing their exercises and to give up...
But also, 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, 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 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, it's difficult if you're used to smoking or drinking but I've, I've spoken to people about it and they've cut out alcohol completely and the effects have been mind blowing. They've felt the arthritis completely ease up and likewise with smoking as well.
Health workers need to be gentle and to allow plenty of time for the consultation.
Health workers need to be gentle and to allow plenty of time for the consultation.
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.