And you do exercise?

Yeah well, I need to join a gym. But its just been this year, since I’ve went to Uni, that its been quite hard with my studying, but I was at the gym, I used to do, I’ve done four Great North Run’s, twice for CF, Marie Curie and Children with Leukaemia, all about three hours and under, and I’ve been fine, I love, and I do like jogging, as soon as I hear I’m doing the Great North Run I start training because I know I’ve got to do it, but at Uni, on campus I’m always on my cycle, pedalling round and things like that, so I play squash a lot. I go skiing. Skiing’s the one where I’ve got to prepare to go skiing, because the altitude affects, well it affects my chest so I tend to have antibiotics before I go, while I’m there and when I come back because the first two times I went, and the first time I didn’t take anything I came, by the end of the week I had a chest infection. The second time, I had antibiotics before I went, which was okay, I was fine when I was staying and I got back and I ended up with a chest infection again, so it’s the third and fourth time, it’s been antibiotics for about a month, while I’m, with the skiing holiday in the middle, just to make sure that I don’t get a chest infection.

What do the doctors say or advise you to do, regarding sport?

Do it [Laughs]. It’s good. I don’t actually do Physio, it doesn’t, it doesn’t actually benefit me, I don’t. I’m not productive, to actually bring anything up, it’s always just dry, so doing that it irritates it, it makes it inflamed, so for me it has to be a really good run, like a cardio, doing something that’s going to get stuff moving, and then if there is something there I’ll cough and if I’m coughing then I know that I need to do Physio, but that never happens.

I’ve tried every hobby going, dancing, karate, ju-jitsu, football, netball, I’ve done everything. Nothings ever stopped me, even skiing, I’ve even done diving. And I love doing diving. I was going to do my open water to 18 metres but then I got my PortaCath put in, and possibly there could be a small air bubble or something in it, and I don’t fancy compressing it and letting it explode at some point. So possibly when it comes out I’ll pick my diving back up, but, that’s the only thing that CF has stopped us doing, is doing my diving again. Because I went on holiday, I did my diving there. And then I came back, and then I had my port put in, a week after. It was booked in, and I didn’t think anything about the diving when I was away, and then when I went on holiday the next time I had my port in, and I was going to do it, and I just thought ‘Aah, I can’t, I don’t want to do it, I don’t think, not without asking, and when I did ask I was like ‘I didn’t think I could be. It’s because I always do get, like with, like a tiny air bubble or something there, that, I’d probably could do diving, but I’d feel edgy about it, I get terrible vertigo, if I’ve got no balance in my ears, so as I’m coming up, I haven’t got a clue as to where I am.

So there’s one thing that you can’t do.

Well I can when my port’s taken out. Hopefully they won’t replace it immediately. I’ve never had to use it for nearly three years now. It’s the only time it gets used was yesterday when I had it flushed, but they can’t take any, I don’t get any drawbacks or, they don’t take my blood from it, so it’s literally just getting flushed at the moment every month, and, antibiotics don’t go into it [laughs].

But, I used to do a lot of exercise, like over the summer when I’m not, when I’m not at university, but if I am at university I find maybe once or twice a week to be able to go to the gym, which is, it is hard, but you know there is so much else going on that you can’t really find the time to go. So.

And exercise is an important part?

Very, and if not more important than, well in my situation, doing physiotherapy, it’s probably better for me to go out and do exercise, because it sort of keeps you, keeps you in better condition that doing just physiotherapy.

How often do you do your Physio?

Well me personally, I’m supposed to do it twice a day for 30 minutes, but, me personally I don’t do it as often as that, I might do it once every couple of days if I’m feeling sort of, if I get in from work and I’m really tired and I can feel a sort of like tightening on my chest, I’ll do my Physio then, but it is a boring process so you don’t really tend to sit for 30 minutes, you know, I can do a few cycles and I’ll feel better so I’ll maybe will stick to that, but then I’ll try and find time to go to the gym, so…

What has your doctor say about it?

Well my consultant he, he’s quite, like thinks strongly about me doing a lot of physiotherapy so he tries to get us to do exercise more often so you know he tells us to go to the gym and he tells us to go out running and he thinks that is, he probably agrees with me, he thinks it’s a lot more important than sitting and doing Physio as long as its, you know obviously it’ll stimulate you more and you’ll be more interested in doing it. So he’s a lot, he’s probably, he says you should be trying to get us to do 30 minutes every day, so, you know, that’s not possible for us at the moment, but sometimes I would try to do that if I had the chance.

Oh ok. I’m not allowed to do any kind of contact sport ’cause I have these tubes in my chest and if they get lodged, if they get torn out then that’s my heart gone as well. So I’d bleed to death. So it’s. Stuff like football, rugby, you know. Pretty much, yes it’s almost any sport I can’t do because it will involve tackling. And in each tackle there could be a miss and something could go wrong.

Can you do swimming?

No ’cause the, my tubes aren’t allowed to get wet because when, when the tubes get wet you could get infection and that would go straight to my heart.

Ok. So most sports are out then?

Yeah I do fitness training.

Ok.

I only do that when I’m at the school ’cause I’m not supposed to exercise that much. I only exercise when I’ve actually put on weight. So I’m still waiting. But yeah I do, I do fitness training and I lift weights and stuff.

Under the supervision of?

Yeah a P.E. teacher.

A P.E. teacher.

I don’t lift very much. I lift about 5 gms that’s about it.

Ok.

I figure if I do the least amount of work I’m more likely to put on loads of weight. So I only lift about 5 gms. I’m sitting there going. You know I’m doing the, I’m doing the fastest of everyone. And everyone’s really impressed until they see how much I’m lifting.

I’m not limited in most ways but there are some sports I just can’t do, rugby for example. And I’ve never played football so I just don’t play football. And I don’t get in any contact with anyone. So in that, those areas I’m restricted but that’s always been normal for me since at the age of 10 that I don’t really notice it now. It’s just part of me.

Don’t really have any issues with that. I go to parties and I go walking with my dad when I’m on holiday with him and I don’t really have any problems or after consequences really. It’s just normal as if I’m anyone else. I don’t really think of my arthritis now when I’m doing things.

So this has been the case for the last two years.

Two years really.

Ok. Before.

Before that there was obviously restrictions. I couldn’t go walking with my dad. If I wanted to go to parties I had to think, you know, have I got anything in the morning [laugh] I might not feel too good and I might not be able to stay the whole night. Might not be able to dance or anything [laugh]. So yeah I suppose it was a back thought really.

I’ve never felt completely different from everyone else but I’ve always known that there’s parts of me that are different. You know, not being able to do things and when I was really ill I wasn’t able to walk very far and you know, I wasn’t able to jump over fences [laugh] or else something like, things like that. But it’s always, it’s not taken over what I’ve done, the feeling different. It’s just been in my head, you know, I can’t do that, oh he’s doing that but I can’t do that. But it’s never really affected me. I’ve never really let it get me down. I’ve always kept on top of things and just said, ‘Well can’t do that’ and just not do it [ha ha].

What has the doctor told you regarding taking care of yourself and what you can do and you can’t do?

Jamie’I’m not allowed to play football. I’m not allowed to play, that’s actually I’m not allowed to play contact sports. But I just like playing football when I get home ’cause it’s, it’s good exercise. And I can swim, I can cycle and I. And when we have P.E. once Thursday and a Wednesday, Thursday Week A and Thursday Week B. And we have it Thursday last thing and Wednesday fourth thing. So and there’s no, there’s no point of me going to P.E. ’cause I just stand there and just do nothing.

And you go swimming?

Jamie’Sometimes but not all the time like Saturdays if it’s like a really busy day we just like go swimming sometimes. After like, after like some activities we just go swimming for a bit and then come home. And then, that’s it.

Mother’Don’t forget your golf.

Jamie’Oh yeah and golf on a Sunday.

How does it make you feel not to be able to take part in many sports or activities at school?

Jamie’Well mostly if it’s like footie on a Thursday or footie on a Wednesday it’s usually. We all get into a massive line across the pitch and there’s like six people, six or eight people as captains and they go one, two, three, four, five, six. Go to your eight things, eight six. One, two, three, four and so on until it’s ended. And there’s one left that’s me. You can’t play. ‘What. I was like that. It’s I want, it’s not fair on every, it’s not fair on me. Everybody else to gets to play football except me. Because I like football, I love football and it’s just not fair on everybody. It’s fair on everybody else but it’s not fair on me ’cause everybody else gets a good game and it’s not. It’s doesn’t but it doesn’t let me play [sigh].

Ok so it gets a bit frustrated.

Jamie’Yeah frustrated.

Football. I just play around with my Diadora football, kick it against the garage for goals and use my sister as a goal keeper and my mate comes round and has a kick around as well. So he comes and has a like kick around with the football. And we just have a kick around until latest. And we just swap round until final goals and then he goes home afterwards. And then we just, and then I just come back in afterwards watch a bit more tele and then go to bed.

I think from my mum’s point of view I think it was very important for her to not just kind of keep me at home all the time to make sure that I was still doing everything else that everyone else was doing rather than. Because it keeps you fit and healthy as well. It’s like a, you know, you know, dancing or just going out and doing stuff. It’s just activity like a form of exercise so you’re not sat at home all the time. So you know, you just, you just keep your blood moving basically because I think that was very important.

Ok. Did you do any, apart from dancing do you do any other exercise regularly or not?

I used to go to the gym but I don’t like the gym. I don’t like exercise but dancing is my exercise because it’s quite. It is like an aerobics class when you do a dance class. So that’s my exercise.

Yeah things like that I do. Obviously I don’t take the medicine that I’m meant to take but if they say to me, ‘Oh you shouldn’t do the dancing or you shouldn’t do that. It’s a big part of my life and I’m, and if I’m managing to do it and stay well then I’m going to do it. But if I was doing it and it was causing me to be ill then I’ll have to think again about it but it’s not so. In that sense I’m not just going to stay home and do nothing so.

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.

I do lots of walking. Because I didn’t really think walking was exercise before, so I never used to do it really. But someone said to me, ‘Oh, no, walking is a very good exercise. So I walk to the station in the morning. So that’s about a 20-minute walk in the morning. And I do the 20-minute walk home in the evening. I try and get to the gym, well, usually it’s about two to three times a week. And I use the cycle. Which is good because it’s low impact. So I can sit down and I can put myself in a nice position and I can ensure all my spine is straight, as straight as it can be, when I’m sitting down. I’ve also got a big, like a big Swiss ball and sometimes I just lay over that and do stretches while I’m watching the television. So it’s not, it, although I do do exercise it’s not quite, like I don’t go to the gym every waking hour. I just sort of fit it in. So I might do a bit when I’m watching telly or I might get off a bus stop a bit earlier. So I just try and fit it in where I can.

And what about swimming?

I don’t really like swimming because I, well, I enjoy the actual movement of swimming, I like the, the action of it, but I’m quite self-conscious because of like my shoulders are different heights. And when I’ve got a swimming costume on it’s really noticeable that I’ve got scoliosis. And I’m quite, I don’t really feel comfortable swimming.

So you’re self-confident? You’re sort of self-conscious?

Very conscious of it, very. I will go swimming in the sea. But it’s a very rare occasion, I don’t like going to the swimming pool.

Well I play. I belong to a swimming club and I take karate lessons so it’s like and I play badminton with my friends so that’s like four, four times a week I play sport. And so yeah I like to keep myself fit. And I think it, I possibly play that sport because I have asthma maybe. Maybe I’m more determined to actually keep myself fit so I can keep my asthma under check. It’s possibly a reason why as well.

Well only when I need it, my inhaler. Sometimes I take it before sport like swimming just to make sure my asthma doesn’t affect me while I’m playing, while I’m swimming. But usually it’s if I need it I usually take it or if my asthma was only starting to just affect me and I try and like take deep breaths to try and like stop the effects myself. Try and open my airways up myself which sometimes works [laugh] but usually I take my inhaler if I need it so.

Sometimes my exercise affects me then but I sometimes, I take my inhaler before I go out for a run, before I play sport to help prevent that. If I do then my asthma doesn’t affect me. But sometimes it does if I don’t take my inhaler beforehand.

Ok so you, basically what you need to do is to take your inhaler before you start.

Yeah, well yeah, yes I probably, kind of. And yeah helps, I think well ’cause then my asthma doesn’t affect me. I can enjoy the running or sport more if not worrying about my asthma and so.

Well I’m always keen on sport as well which I think helps. Keeping fit and playing active, playing sport, keeping active especially swimming is, I think it always helped me with my asthma. I seemed to be able to cope with it more. I didn’t seem to. It doesn’t actually seem to worry me as much as it used to ’cause I’m still playing sport, keeping active, keeping fit. Well also some of my friends had asthma but they seemed to be worse. They, they maybe weren’t as active as I was. So really [laugh] I think sport really does help keep you fit, keep you healthy. It really does help with the asthma. It helps you to control it.