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Joseph - Interview 17

Age at interview: 17
Age at diagnosis: 7
Brief Outline: Joseph was diagnosed with Enthesitis Related Arthritis at the age of seven. After initial remission his condition flared up again and it became more difficult to control. He was started on a new drug, Enbrel and has been on remission for the last two years.
Background: Joseph finished his AS levels he will go on to do his A-levels. After that he plans to go to university. He lives with his parents and has an older sister. Ethnic background/nationality' British.

More about me...

Joseph's arthritis was triggered by an episode of food poisoning when he was seven years old. Joseph's condition is genetic, and he carries a particular type of gene that made his immune system over-react to the food poisoning. He remembers his joints swelling up and being in pain. He was put on steroids and given pain relief tablets. He also started physiotherapy. 

He found it strange to be diagnosed with arthritis and having to use a Zimmer frame. He said it was strange because you don't see many seven years old using Zimmer frames or going to school in a wheelchair. At school he found it embarrassing because he had to be pushed around all the time. After a year of treatment his arthritis went into remission and Joseph came out of the wheelchair again. 

Joseph had a relapse when he was 13 years of age. He was experiencing a lot of pain and the doctors put him on Methotrexate to try and relieve the pain and get him back in remission. He was on that drug for about three years. He says that Methotrexate wasn't really working as he was still experiencing a great deal of pain.

During this period he found it very difficult to manage school. He had problems walking and was unable to sleep at night because of the pain. His feelings at that time were of frustration, sadness and anger. His parents and grandparents have been a great source of support and encouragement throughout his experience. He continued attending school and was determined not to give up. Joseph has always felt accepted by his peers and he did not experience any bullying or discrimination at either primary or high school. 

Due to the severity of his condition he was referred to a specialist Adolescent clinic in another city and funding was obtained for him to go onto a new treatment. He was started on Enbrel, a drug that it is fully licensed for adults but not yet for children. Joseph decided to stop taking Methotrexate and says that the team at the clinic respected his decision but made him aware of possible problems. He has always felt very well supported by the team at the Adolescent clinic. For the last two years Joseph has been in remission. 

 

Don't just talk to the parents, include the child as well.

Don't just talk to the parents, include the child as well.

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I think they should just have an awareness of the patient, particularly if they're a bit younger, not just talk to the parents, include the, the child as well. That. And I think it's just an awareness of what else they might, might be happening to them, not just the arthritis. What else might be going on. So just awareness really what it, what it is to be like a child [laugh] and everything involved in being a child.

Did you feel included  when you were in the small clinic?

I always felt included because I had such good relationship with the doctors. Yeah I never felt excluded but there's some doctors you see and you think, 'Oh no, he's not really including me. He's talking to my mum. He's not really talking to me'.

 

Within days after getting food poisoning all his joints had swollen up. Doctors diagnosed him...

Within days after getting food poisoning all his joints had swollen up. Doctors diagnosed him...

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I was at my grandma and granddad's and my dad came to pick me up and my wrist was really stiff and swollen. So we called in at the hospital in [town] on the way back. And they thought that I had a fractured wrist. So they put it in plaster and said come back the next day to change the plaster and check it. And the next thing I knew they were not sure whether it was actually a fracture. They thought I had fluid on the bone. So they admitted me onto the ward and within about 24 hours I was on a drip. I didn't really know what was going on and they didn't seem to know what was wrong with me. And within a week all my joints had swollen up' my knees, my ankles, my wrists. I was unable to move. I was in a lot of pain.

And I was in hospital I'd say for a good two weeks and. Can't remember what medication I was on but I remember there was a lot of new doctors and researchers. And they were all around me and trying to work out what was wrong with me. Eventually they realised that it was arthritis that I'd got. And I was in hospital for about two weeks. And then I was stable enough to go home. And I was in a wheelchair because I was unable to use crutches 'cause my wrists were still bad. So I was in a wheelchair and I had a Zimmer frame for around the house. 

How old were you?

I was ten at the time so it was. I can't remember how I felt at the time with only being ten but I can remember feeling. It was very strange you just, you know, being told you had arthritis at ten [laugh]. You know you just thought of old people with it but when I was brought home and I was like in a Zimmer frame that was even more strange because you know, you don't think you're going to be using a Zimmer frame when you're ten years old.

And I was going back for regular outpatient appointments in [town]. I was having regular physiotherapy. And then I was put on steroids and they really whacked it into remission. And I was on sulphasodazine I think at the time as well for pain relief.

 

He has been in remission for the last two years and his biggest fear is to relapse for a second...

He has been in remission for the last two years and his biggest fear is to relapse for a second...

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My biggest fears is in a way is this point in time. Because it's been in remission for two years is, 'Will it ever go back?' Because there's always a risk that you'll relapse and there's always a risk. Obviously they're going to start eventually taking me off all my medication that when they do you could relapse. And it's such a transitional stage anyway with moving away to university next year that the last thing you want is to go into remission again. So I suppose that's my only worry. But I try to keep positive and look at what I have now and where I was before and just keep positive and hope that everything keeps moving in the right way.

What have the doctors said to you?

They with it being in remission for two years they say it's a good chance that it won't relapse but with it being such a volatile illness there's always that risk. And they would if it wasn't for my exams and going away to university start taking me off some of the medication now. But we're going to wait until I get settled at university and then start cutting back the injections and the other medication that I'm on. And hopefully it should stay in remission but there's always an element of risk.

 

Has had information from the hospital, the Arthritis Research campaign and the internet. Thinks...

Has had information from the hospital, the Arthritis Research campaign and the internet. Thinks...

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Where have you found  information about arthritis at a young age? Who has provided you with that information?

At first it was the hospital obviously. They advised us what the condition involved. The Internet's been a great resource particularly for finding out what medicines have side effects and what, what the medicine, the history of the medicine is because you're prescribed them and you think, 'But what is it?' If you just put in on the Internet there's lots of, you know, material out there. There's also the CCAA website which is useful. And the Arthritis Research Campaign is quite good as well. So I'd say that the Internet's been  the main secondary source of information apart from the hospital. And [city] 's also issued lots of leaflets and provided on various aspects of arthritis from just. They gave us one to give to school. They've given us one that's all about taking control of your medication. Just growing up in general. So leaflets and the Internet really the main secondary source of information apart from the hospital.                                 

How have you found the information from the Internet?      

A lot of it's relevant but some of it's aimed at adults not children so it's just picking out the good stuff but it's general across the Internet really.

And you have done, so you have done the search, the Internet search or your parents?                        

Both of us together. Me and my mum really just, you know, had a look what. Like when I went on Embrol had a look at that. When I went on Methotrexate had a look at that on the Internet. So it's been both of us really just interested to have a look what's out there.

I think there should be more publicity of what resources are available. I don't think it's a lack of resources, it's a lack of promotion. Because particularly if you're not at a big clinic like [city], not all people are going to be aware of what's available. So if it's publicised more I think that'll maximise the resources that are available which are very good. I found to be very good. So I think it's more about promotion of what's out there and than improving the material that's available.

 

Had dreadful pain from his arthritis that would leave him feeling exhausted at school and...

Had dreadful pain from his arthritis that would leave him feeling exhausted at school and...

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I could do something and say just walk to the shop and the next day I'd be in absolute agony. I was determined to do it but the next day I'd be in agony or I could just wake up and have really. My legs could be really stiff and I couldn't be able, you know, walk even down the stairs. I can remember my back once when I was walking home just locked and I [ha] had to, you know, just sit down and get the bus and just. You know it was weird how it just, you know one day you can be fine, the next day you can have really, have a flare up. And it was really like that until I was in full remission like I am at the moment. 

So for how long did the pain last?

It could last for a day, it could last for a week. Seemed endless [laugh]. It was so volatile.

And which part of the body?

It was mainly my ankles and knees. So it's probably the worst area to get pain 'cause you're on your feet all day at school and you're walking around all day. And you just want to sit down but you can't [laugh].

You said you, you got angry?

Yes. Why, why am I like this? Why am I sat here and I can't do anything? Why can't I do this? Used to get angry, upset, frustrated, frustration more than anything [pause]'

It was mainly when I was in really bad pain and I just wanted to be out of pain and didn't want to be sat there and didn't want to be in pain. Just wanted to be normal again. I used to get really angry and upset. And I think it was tiredness as well. Just a build up of everything getting on top of me.

Waking up in the night and screaming with pain. It was in a way frightening I suppose when I look back on it. It's waking up and in really in pain. And it's dark and screaming for help. It must have been frightening at the time. Can't remember feeling like that really but it must have been quite frightening.

And any other feelings? Were you frustrated or angry or sad '

I got very frustrated that I was reliant on people. I liked to be independent. Do my own things but I was very frustrated especially when I was tired, waking up at night. And then coming home and just collapsing on the sofa with tiredness, you know. It's very frustrating just not having been able to do what you wanted.

Tell me more about fatigue because I know that pain is, is very debilitating.

Yup. It's, I was. I remember when I was in, when I was in primary school and it was. By the time I got to lunchtime I was just so tired because I was working so hard just to keep going and, you know, not let the pain get me down. And in high school I was so determined to go to school and so determined not to miss things that because I was trying so hard not to just give up. You're just working overtime and doing double what everyone else is doing just to keep on top of everything and not miss any school or miss anything. So with the pain as well it just makes you very, very tired. And I was very pale, lost a lot of weight. It was extremely hard going to school in the morning after being up all night with pain.

And I didn't, I had to get the bus home every day 'cause I couldn't walk and I didn't like it being on the bus, the rowdy school bus. You're really tired and just want to get home. Didn't and it's just I didn't like it at all.

 

He had taken various drugs for his arthritis without much success, until a consultant suggested...

He had taken various drugs for his arthritis without much success, until a consultant suggested...

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We went back to [name] Hospital and I was put on the pain relief diclofenac. And I remember it was quite a long time before, you know, I was still in a lot of pain. And they decided that they'd put me on methotrexate as a, a new method to try and relieve the pain and get my, get me back up to remission. And I was on that for quite a long time, for about three years. And I can remember that it wasn't really working and I was still in a lot of pain and I was, I was managing to keep at school but it was increasingly difficult because I wasn't sleeping at night.  

And I remember they invited me to this conference, look at difficult case studies and try and find a solution. And that's when they put me in contact with [city] 'cause they recommended that the healthcare, the doctor, Dr [name] there was a specialist there, the specialist team. 

So and I can remember going for the first consultation. I was really white and pale, really struggling to walk and I [laugh], for some reason I thought that I wasn't poorly enough to go to [city] 'cause I thought it was a children's hospital and there would be all these poorly people. I remember the first consultation. It was with Professor [name], I think his name is. And they transferred my care over there. And I remember and there was, they continued with methotrexate and I think I went on diclofenac as well. 

And that was in 2003. The methotrexate still wasn't working. It was still on and off 2003/2004, still not in remission. I was still really poorly. And then while it was really bad and, you know it was 2004, I had the steroid injections in the ankles. And had a series of drips, steroids as well. And then I went back on steroids in tablet form. I think it was 2003. And that wasn't very good at the time because being 13/14 at school all my face was swollen up and it was not very nice for all my [laugh] friends and gradually seeing my face blow up 'cause I was on such a high dose. 

And that kicked it into remission in a way but it was still present, still had a bit of pain. And then eventually they, we found out about Enbrel and going onto Enbrel. And they applied for funding and I got it. And then they started me on the Enbrel and I still had methotrexate at that point but it was getting that the methotrexate was just making me feel ill and taking over. And every Friday night I just felt terrible which wasn't very good 'cause I had Scouts on Friday night. And eventually I refused to take it any more 'cause I was just feeling so terrible. So the Enbrel was working by that point and it was getting into remission. And it was a very gradual process but by 2005 it was starting to, you know, into full remission. It was a lot better. I wasn't, started not to notice it as much. Started to be able to do what I used to be able to do' walking, biking to school. And I've been in remission hopefully now for two years. So hopefully with the new medications are working.

And I have to do injections twice a week.

You do it yourself or you need to go to the hospital?

I do them myself. I have, I think it's every six months I have a delivery from Healthcare at Home. They deliver me with the supplies of needles, vials of injections. Then I mix it up myself, the water and medicine vial and then I do it with a pen every Monday and Thursday.

What has it meant to you to feel better now?

It's just meant my independence is back because when I was relapsed in 2000 I started to become independent at 13. And not being able to just go out and think, 'Am I going to be able to do t
 

He remembers feeling different to his peers in primary and secondary schools because of his...

He remembers feeling different to his peers in primary and secondary schools because of his...

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At primary school I can't. I wasn't really aware of social peers or anything 'cause I was only ten. But I can remember feeling different and feeling different from everyone else because I couldn't, you know, walk and I was in a wheelchair.

At high school I was much more aware of my social peers and I was walking differently so I felt different. I had to have my timetable changed so I was in downstairs lessons. So I had to join a new class which was strange. And for my classmates it was strange because they'd never know anything about arthritis or seen any children with it. So it was very strange for them as well. It was a new, new thing but, you know, people came to accept it and I didn't suffer any bullying or anything. People were just aware of it and got on with it really.

But you felt different?

I felt different.

And any other feelings? Were you frustrated or angry or sad '

I got very frustrated that I was reliant on people. I liked to be independent. Do my own things but I was very frustrated especially when I was tired, waking up at night. And then coming home and just collapsing on the sofa with tiredness, you know. It's very frustrating just not having been able to do what you wanted.

Have you talked to anybody?

I talked to my grandmother and granddad a lot and my dad and my mum when I was really poorly. So I used to just cry, and I was in so much pain didn't know what, what's wrong with me. Didn't understand it so I used to get really angry and talked to them a lot. So.

You said you got angry?

Yes. Why am I like this? Why am I sat here and I can't do anything? Why can't I do this? Used to get angry, upset, frustrated, frustration more than anything.

Yeah. That period in which you felt like that was kind of, it lasted as long as the pain lasted or?

It was mainly when I was in really bad pain and I just wanted to be out of pain and didn't want to be sat there and didn't want to be in pain. Just wanted to be normal again. I used to get really angry and upset. And I think it was tiredness as well. Just a build up of everything getting on top of me.

 

Says that since the age of ten he has been restricted regarding contact sports and that this...

Says that since the age of ten he has been restricted regarding contact sports and that this...

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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].
 
 

Says that he eats what he wants because he has always enjoyed his food particularly when his...

Says that he eats what he wants because he has always enjoyed his food particularly when his...

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I don't think so. I've always been told that I shouldn't eat this, shouldn't eat that. If I eat that that'll make this worse. This, that'll make that worse but I've always said, 'I enjoy my food. I'm going to eat what I want.' And I've always done that and it's never done me any harm. So I, I'm not saying ignore advice on diet but I have [laugh]. I've never wanted to restrict my diet because I've always said, 'I've, I've enjoyed my food'. It's something I enjoy particularly when I was ill. I said, 'If I'm going to enjoy something I might as well enjoy my food.' So I've never really followed a strict diet.

So what have they said regarding diet?

Well they said, 'Miss out' I think it was, 'Red meat and some, eat more of this and eat less of that'. And it's just I never yeah bothered to miss out things I enjoy [laugh]. Drink less fizzy drinks and don't eat things with acid in them. And I've always said, 'I'll, I'll eat what I want.' [laugh].

 

Compares being at adult and adolescent clinics. Developed a good relationship with his team....

Compares being at adult and adolescent clinics. Developed a good relationship with his team....

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When I went to [city] it was just that I'd been in such a, a small clinic in [town] with all the old people and they didn't. Although I was ill and in pain I didn't feel that I was really ill because when I was going to a children's hospital in [city] I thought it's a children's hospital. It's going to be, you know, you see on the TV all these really, really ill children and I didn't associate myself with being like that. Obviously I was but I didn't feel like that because I'd never been aware of how ill I was. Although I was in pain and everything and I just didn't feel that I was one of those ill people that you see in the children's hospital.

It was an all-adult clinic.

How did you find it?

It was not very, I don't know what the word is, pleasant.  I remember once I went to the desk and said, 'It's Joseph [surname] in. My mum's just parking the car.' And he said, 'Oh is it your mum that's seeing the doctor?' And I said, 'No it's me'. And I remember thinking that was a bit strange 'cause I was the patient but they thought that my mum was the one that was the patient. And being with old people when you're 10 you don't really think it's, you know, they don't think it's you [laugh]. Doesn't feel quite right [laugh].

And how did it feel to go to a children's hospital when you saw  people more of your own age?

It was strange 'cause I'd never seen anyone else with arthritis so it was a completely new experience meeting people. And I went on the weekend organised by the CCAA, the charity for children with arthritis, meeting all these other people and talking to them. And it was strange because I'd never met anyone or talked to anyone. And realising there was people going through the same thing as you was, a relief in a way because you didn't think, oh it's just me. 'Cause you had all these other people that had been through the same thing and, and come, come through the other side so it was a, a relief to meet people that were in a similar condition. 

I assume it was a positive experience?

That was very positive 'cause you know, it's just nice to be normal [laugh] in a sense you didn't feel the odd one out [laugh].

Where will the clinic be in the university town or here?

They haven't decided yet. Obviously 'cause it's not definite where I'm going. But it's likely that I'll keep a base in, [city] because I'm transferring my care there to the adult clinic. And it's possible that if I go to [city] it's the [city] campus that they've got a contact in the town so I'll have a base there and a base back in [city].

Ok. Have you seen the consultant here, the adult consultant?

Not yet I'm just waiting for my first consultation appointment which will be around March time. And I've got a back-up appointment booked in [city] for the summer just in case there's any issues with the consultant in [city] where I'm not happy. I've always got back in [city] that appointment but I don't have to go to it. It's just a back-up.

Ok so does it mean that you have a say whether you sort of if you feel comfortable with it?

Yeah if I, if I'd go and I completely don't get on with the doctor in [city] and I don't feel comfortable with them I can go back to [city] and address the issues. And hopefully resolve it [ha ha].

I always had a really good relationship with Dr. [name] and Dr [name] And it was quite casual and
 

When his arthritis was active he never knew in advance if he could go out or would have to cancel...

When his arthritis was active he never knew in advance if he could go out or would have to cancel...

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What happened to your social life, those activities that you used to do with your friends before you became on, on remission?

I went out less I guess. And it's always a bit of a mission if you're staying round friends because you have to remember your medication. You know, you have to think, 'Well have I got this, have I got that'. But I'd say I did less with them. I was obviously less, less able to go out and play and stuff. But I can't remember it having a dramatic impact. Just remember being able to do less but can't remember it really affecting me.

You didn't experience sort of friends going away or things like that or stop? 

I don't think I've lost any friends. I'd say they've stuck with me.

I think it was just being able to do more things and not have to worry about not being able to do things. You know, just say, 'Oh yeah I'll go out tomorrow or I'll go out now'. And it was just the freedom of just [laugh] being able to be normal and not have to worry how you felt and not having to make an effort to go out. I think that's the big difference because when I was poorly I was, you know, it was such an effort to go out 'cause you don't really want to. But now I'm in remission, I don't know, just do what I want. I don't have to think about it.
 
 

After his diagnosis he went back to school in a wheelchair. The school and classmates were...

After his diagnosis he went back to school in a wheelchair. The school and classmates were...

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I can remember going back to school in the September because it started in the summer holidays and I was obviously still in a wheelchair. And I wasn't able to manage a full day at school 'cause I was so tired all the time. So I used to go in for the mornings and come back and come home in the evenings, in the afternoon. I can remember it as quite strange being in the wheelchair and I had to take the arms off the wheelchair in my lessons to go under the table. And it was embarrassing I think at first because, you know, you're being pushed around all the time. And you just want to be running around and playing with your mates. But that was no longer possible really.

It was a good year before I started a normal routine and I was out of my wheelchair. And then it really was just normal that that's the way it was. I can remember after about a year it was, it was going into remission. I think I was off the steroids by then and I think it was fairly normal. I was able to take part in sports and normal activities and I was in full remission. And it was that way really from '96 until about the year 2000 when I was about 13 when it just went into sudden relapse again. 

And that's when my memories sort of it really kick into place because I was 13. I can remember going from biking to school every day, walking to being immobile again and, and back to square one. 

Ok. And what about your teachers?

They were always aware of my problems and supportive. And they can be lenient for work if it's late or something they were always aware of it and never really penalised me for it.

And what about, did you take medicine at school?

I've never had take any at school.

But I mean if you were not feeling well, if you were in pain.

They let me go home. Yeah. But I never, I never did that. I never wanted to do that. But they moved my timetable so I was in a class with mostly downstairs lessons so obviously that helped me a lot, keep mobile and keep going to school.

Yeah I was lucky, very lucky that I didn't have any problems at school.

You went to a small school?

Relatively small high school. It wasn't big but, you know, you know everyone and everyone knows you. So everyone, I suppose it's a bit degrading everyone knows you as Joseph the one with arthritis but you didn't feel bullied or separate or different. But yeah everyone knew who I was and what my condition was. But it wasn't, they didn't treat me different or anything because of it.

I suppose if I'd been in a big school in a city and it being busier and more people I suppose there would have been groups of people that would have bullied you or, or treated you differently. But being in such a small environment it wasn't really a problem.

 

His parents, sister and grandparents have all helped him cope with arthritis.

His parents, sister and grandparents have all helped him cope with arthritis.

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At the start my parents played a big role obviously because I was so, when I was in hospital for two weeks they were, mum stayed in hospital. And they were very involved when I was back at home because obviously when I needed help in the night, when I was in pain in the night they'd come and help and comfort me, very supportive all the, all the time. And the same when it, when I had my flare up in 2000. And now I'm in remission  they play a part. You know they take, take me to the hospital. Offer me support if, well if I want any advice or anything and help me when I go away. Then, you know, they might carry my stuff for me, all my injections and everything. And I'd say it's affected them a lot when it first flared up. 'Cause obviously it's a big worry [ha ha] when you know, I was only ten at the time. So it was a lot of worry and I'd say my grandparents as well 'cause they came over to stay and look after my sister while mum and dad were at hospital. And I'd say my, my grandparents that I was with when it flared for the first time and they were very worried and didn't feel guilty but, you know, when it happened and they were responsible for me they must have felt a bit uneasy.  

And how's your relationship with your sister?

I've got a fairly good relationship, brother and sister relationship [laugh]. She helped me a lot at primary school. She was very helpful with taking me out in a wheelchair and stuff like when I was at break times and stuff. So I was very appreciative of that.

She's older or younger?

So she's 20 so she's older.

They weren't. They didn't restrict me. They never restricted me from doing anything but they just. My mum was probably a bit more cautious, you know. 'Just watch what you're doing. Just make sure, not overdoing it.' But they never restricted me. They just, you know, 'Are you sure you're going to be able to do it? You know what you're doing?' So never restricted me just sort of supported me in what I've done and just, just gave me a word of caution if anything but never restricted me from doing anything.

 

His advice is to keep positive. Don't let it defeat you. If you let your illness get you down you...

His advice is to keep positive. Don't let it defeat you. If you let your illness get you down you...

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Keep positive. Don't let it defeat you. That's the most important thing because if you let it get on top of you then you're going to be worse. But if you keep on top of it even when you're in pain if you just try and keep on top of it, try and keep positive. I'd say that's essential and just try and keep a normal routine. Because if not you're just going to feel completely isolated. And, if you're not in school, you're not seeing your friends, and you're not on top of it you're going to be extremely fed up all the time and that's not going to assist you with recovering and getting better. And I'd say good communication with your doctor and if, if there's something you're not sure of just ask. I'd say the most important thing is keeping positive really. That's the best method.

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