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.

It’s a difficult one. I wouldn’t want to scare them [Laughs]. Really. I think the most important thing is that everybody’s different and that everybody has it differently and because my hip got bad in one year, bad enough to have it replaced, doesn’t mean that it could happen to somebody else. I would say that you have to prepare yourself mentally because anything can happen. It can be very quick or it can be very slow. And also fight very hard for what you want and what you don’t. It is difficult if you’ve got a consultant like, like at [hospital] I had to fight very hard to get off that drug. But you have to keep at it because it’s your own body and they, they will listen to you.

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.

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 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.

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.

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.

With food and with fashion no, no, I’m not, I wouldn’t say necessarily with fashion, with food and shoes probably I will say, ‘No, I’m going to wear what I want and I will eat what I want. And I’m, I’ve heard of these things about cutting out dairy’s supposed to be good for arthritis an cutting out wheat and I remember we were discussing it in Tai Chi and she was saying, ‘Cut out dairy and you cut out wheat and you cut out red meat. You cut out citrus fruits. And I was thinking, ‘So what do I eat? If I cut out all of those things, I really don’t know what I would eat.

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.

And I had a home tutor which was set up through my doctor and that was good but legally I was only allowed 4 hours a week which you know didn’t really help. But I was quite a bright child and it was OK, I didn’t miss out on too much. I think maybe, the only thing I did miss out on really was maths because I don’t enjoy maths and I didn’t do, I, I did all right in school but I wasn’t as good as I probably should have been so I re-did my GCSE maths during the last school year because I wasn’t really happy with that.

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

And I don’t feel that they really helped me either, because I used to take them off. My legs are straight now because I used to do the exercises and I used to do all the physio and keep up with all of that, that was very important. So my legs are fine now, I don’t have to wear them. I actually liked the splints for my hands; they’re to stop my wrists from bending down. You may have seen people they’ve had arthritis and didn’t have splints and their wrists are permanently bent downwards. And that’s really sad to see because I think splints weren’t thought as being that important in, in those, in the day that the person probably needed them. But I wear my night time splints. I do have slight dips in my wrists but I wear my splints every night so hopefully it, it won’t get much worse.

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.

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, 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

Like I say I don’t tend to change my diet too much but at the same time I, I don’t drink alcohol and I don’t smoke and I think that’s very important to keep yourself healthy because if I did those things as well then I don’t think I would deserve the new drug that I’m on. I don’t think I would deserve most of the drugs that I take. ‘Cos if you’re not putting in the effort in yourself then sometimes I don’t think that you deserve, you know, some of the ground breaking drugs that are on offer unless you’re prepared to put in the hard work as well with it.

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.

I’ve always felt like that. I’ve always felt, it’s not necessarily sadness and it’s sometimes, it, bitterness can creep in but when you watch other people, especially your friends, or, like I say on this workshop, people who are supposed to be like you but they can still do all these things, they can still run around and ‘cos we were on this estate where there were lots of things to do, games to play and trees to climb and things but I felt that even though you were around people who did have, have the arthritis they didn’t have it to the same level as you and they were sort of, even though they had it they were doing all the things that you couldn’t do and it was almost like it was being rubbed in your face. But nobody obviously meant it to be that way.

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.

A general flare would be when everything feels bad. And that, that can start from when you wake up. Some days I wake up and I feel like I’ve not been asleep at all, my body feels physically exhausted and I can have done nothing the day before. I don’t understand them, and they’re very rare now that I’m on the new drug ‘cos I have a lot more energy but I wouldn’t say that I’m quite as healthy as I’d like to be though. I’m certainly not ready to work right now. Hopefully I’ll be able to study full time but I know that I’m, I’m not at my physical peak. But on those general flare up days every joint hurts enough to make you sort of not want to do anything and just sit back in bed and not necessarily just in bed but just sit around the house, not do too much. And sometimes, if it’s on a day when you know you have to do something you can get yourself going and you can get through it and you can, you think to yourself at the end of the day, ‘Oh I felt awful when I woke up and I felt all right now. And, but other days it’s just too much to get yourself going and you purposefully don’t do anything on those days.

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.

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, 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-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.