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.

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.

I suffer from hyperplastic left heart syndrome. It’s a disease, well it isn’t a disease it’s like… a part of me where I’ve got one half real and one half plastic. I get breathless very easily. I have to take warfarin, digoxin and some other tablets and I have to take ’em every day and every night at a regular time.

Some sports I can’t do. Some sports I can do like running. Usually teacher usually says, ‘Go, we’ll do, we’re doing 100, 1500 metres round one track. Everybody else do three, I do one because I get breathless very easily so I go around it once and completely conk out. Everybody else has kept going ’til third lap and they’ve absolutely bloated their self out and that’s’ pretty much it.

Ok how does it make you feel when you can’t?

I can’t breathe properly once, once I get breathless.

I need to like take a drink of something because I get pretty breathless and’ I just get breathless all the time. I just don’t like being breathless. I just feel absolutely out, out, completely out cold. I just feel like fainting once I’ve been breathless.

How did it make you feel to have this memory loss and to accommodate to a new situation?

Scary [laughs]. It still is. I can’t remember any of my holidays. My mum will say this holiday and I can’t remember and like my friends get annoyed with me because I keep telling them the same situation about the day before and [laughs] I don’t remember telling it to them [laughs] and I don’t pick up things as quickly and at work I don’t, I don’t remember my customers and [laughs] I am not so good on the tills because I don’t remember certain actions. It has also affected my attention span [laughs]. And my, what is the other one, my… we have got it now. My words [laughs]. No I can’t remember the word.

When are you more likely to have a seizure? In the morning, when you wake up.

At night actually they seem to happen to me more. That is kind of if I haven’t had enough sleep [laughs] or when I am more tired. So it is what we notice. But its, if I do sleep and then I am allowed to stay up for however long I want to [laughs] does that make sense [laughs] yes, it is just proportioning my sleep really [laughs].

Tell me how often do you have seizures?

I haven’t had one for the past like two months, three months really. I am doing all right really at the moment. I am quite happy about that [laughs].

On average in a year how many were you having?

I was having about two a month.

Two a month?

Yes. I mean sometimes one a week. But I mean it depended from week to week and you know, it varied. And you can never tell really, you know [laughs]. It all [laughs] changes really and I mean absence seizures I have them permanently really. But I haven’t had them in like two months [laughs]. So I am doing quite well. But yes they happen permanently and when I am on the till at work people get really frustrated with me. I would start tapping the till and yes, it really annoyed people at the till, yes.

What about tiredness. Do you think you get more tired than people your own age or not.

Yes sometimes. I mean it was a lot at the start of my drugs. Not as much now, but whether that is just because I am getting used to the drugs. I don’t know [laughs].

So at the beginning you felt ‘?

I wanted to sleep half the time. And at the minute at college, I go to college and I come home and I collapse on the sofa. There isn’t really much more I want to do. I don’t have the effort to want to do anything else. So whether that is me being tired or I don’t know. But it is a pretty full day that we do so

Any other difficulties or limitations? Physical or emotional?

Physical. You can wake up with a really bad tongue some mornings. From biting it. Or ache for days [laugh]. But I am pretty active. Like I did hockey and I go to dancing and ballet and modern. So I am pretty active on that side.

Okay.

It doesn’t really affect the physicalunless you have just had a fit. If you have just had one you can’t really do much apart from lay on the sofa and recover or sleep it off and in that case it kind of hurts [laughs].

Yeah it wasn’t really my friends’ fault because you know, when you’re at uni it’s a really busy time. And there’s so much happening and you’re changing and you’re growing up and you’re making all these new friends and there’s so much going on. And because I just couldn’t do it, I couldn’t join in, lots of them just moved on without me. But it was really, like I felt really lonely because I was just at home every day. And just like the biggest achievement of my day was if I could make it down to the sofa to sit down on the sofa for an hour or so. And so it just didn’t really match to them, you know, having passed their exams and you know, they were all getting new flats and like talking about who they were going to live with next and whatever. And I was just like, ‘Yeah I, I drank a glass of water today’ was my big achievement. So they kind of all moved on so it was like, yeah I felt really isolated and really just, you know, on my own with it.

And then my mum had to leave work because I couldn’t really stay on my own all day because I couldn’t really. I could probably just about get out of bed to go to the toilet but I couldn’t get myself a drink or anything like that. So she stayed at home with me and she was getting really, really like worried about me because you know it’s not normal just to want to sleep all day. I could sleep for like seven or eight hours during the day and then sleep the whole night as well. But like every time I woke up I didn’t feel like I’d had a refreshing sleep. It just felt I was still absolutely exhausted but it wasn’t the kind of. I always sort of say it’s not the kind of exhaustion when if you go for a really good run and you sit down and you know you feel like, ‘Hey I’m really tired but I feel good about it. It’s not that kind of tiredness. It’s just like something’s been sucked out of you and everything’s like sort of a big, big lead weight is sitting on top of you and you can’t move it and you can’t do anything to get it off you.

I would say when I was young, the earlier days I can’t remember, but you know I had very bad fevers, extremely high temperatures and basically I just couldn’t move. You know, I mean I would wake up in the morning and I would just be stuck all over. You know obviously that is quite a shock. But anyway all my joints were hot, knees, ankles, arms, hands. And anyway this went on for years all through my school career you now right up until I was a teenager, you know, I was in and out of hospital on a regular basis. But as time has gone on the damage – it is not so much the arthritis now that is affecting me, but it is more the damage by the arthritis. And so I don’t get the flares today and the high temperatures but today it is the bone damage which I suffer from. And because I am only small. I am only four foot six obviously I am not as tall as anybody else and so because I have had it from that young an age you know obviously my growth, my bones, my muscles are all totally they are rubbish because of me arthritis. But as I said nowadays, since I was sort of eleven, twelve, I haven’t had the flares. It has been the damage and of course I can’t walk very far now and when I go out I have to use a wheelchair. I use an electric wheelchair because I can’t walk far.

I will tell you the main ones. When I was seven because my legs when I walked when I walked I was going out, so me legs were all bent, my hips. So I had to have I can’t remember what they called it. But I had to have them basically broken and straightened. So they straightened my legs. That was when I was seven so I spent six weeks with my legs – both my legs in plaster. So that was obviously quite hard at the time but in my teenager years I have had both my knees and both my hips replaced that is another four operations. I had my first hip done when I was eleven and I was the smallest person in the country or something to have a hip replacement. But because of the bones and because I had arthritis since I was two, the damage then had already been done. So I mean can you imagine what it is like now, but when I was eleven my hip just totally gave way. And there was hardly any bone there at all because it had just been eroded by the arthritis. So that is why I have had me hips and knees replaced and when I was 15 I had my spine fused and you know you have got the vertebras in your back well I have had the top two of those fused together and I have had you know the, you know peg what your head sits on I have had that removed because basically all my spine was crumbling, the vertebras, and they are supposed to be like in a square but they are more like triangles because it is just crushing and it is still happening now. I have got to have it down again. And then the next two vertebras down I had done I have got to have fused again because it is just crumbling because of the arthritis. So that was a major operation that was. I had to wear this halo on my head and I have still got the screw marks. I had to wear that for four months that was a major operation. If I have it done again it won’t be so big because you know obviously that was eight or nine years ago and things have improved since then. But you know eventually I will have to have them all fused. You know I will just get stuck like that eventually and I won’t be able to turn my head.

And, what do you need to avoid doing in order to keep yourself well?

Well, I’ve been told like, I’ve been asked like, you know, I work in a restaurant and you know restaurants are usually smoke free, but there is, there was a policy in my restaurant where they can smoke in the bar area. And it would be like, my consultant used to come for like meals with his family and things like that, and he used to sort of banter on about, ‘You can’t work in here, it’s too smoky,’ and things like that, and I know about friends whove had it as well, so, you know, that’s the only major thing he’ll say you know, ‘Don’t go to smoky pubs, don’t go, don’t work where its really smoky,’ and things like that, that’s the only thing but, you can’t avoid it, I mean, once the summer comes anyway its going to be stopped, but there’s certain things you can’t avoid doing, so, you just have to try and reduce it as much as you can, but apart from that, not really anything that I can’t do.

So you can’t really work in a smoky environment.

Yeah, but I’ve never really had to, I mean, I’ve had a few part time jobs, either in shops or in like leisure centres and where we are now, which is like a really busy restaurant, and a lot, in a lot of the chains of my restaurant you can’t smoke anyway, so, it isn’t a big deal because a lot of people aren’t really for smoking in, in restaurants anyway now, so it isn’t a massive deal now, and obviously it’ll be banned completely in a couple of months time, so. That’s won’t really be an issue then.

What about tiredness, do you get, do you think that you get more tired than other people your age?

I don’t know. I don’t think I do, more than anybody else, maybe its, you know I, I go through slight phases once every couple of, every two or three months, I’ll have like, you know, a week where I’m just really, really lethargic and you know, I, it’s, you just, you can’t be bothered, but I don’t think that’s anything different from what anybody else has.

Okay.

Sometimes I feel like maybe I should just take it easy for a couple of days, but, don’t go out on weekends or, you know, just take it easy but, with my life at the minute, I haven’t got time, like, it feels like I haven’t got time, because I go, I’ve got lectures 15 hours a week and then, I’m doing my final project and all my coursework and then I’ve got to work, I work about 15 to 20 hours a week, so, there isn’t a lot of time for us to sort of socialise at the minute anyway, so, its quite’

You’re very very busy.

Yeah. At the minute yeah, definitely. Hopefully, once I’ve got the next few months out of the way it’ll start to steady out a little bit and I’ll have a little bit more time for myself.

Well, I work nights, four nights, well three nights a week at the minute, but usually four. So, and I’ll maybe go out for, to the pictures or for a meal or something, one night a week, then I maybe go out one night a week but it’s, it’s not very often I go out, sometimes, it depends on birthdays and things like that, but apart from that, I don’t go out you know, drinking a lot. Probably once a fortnight, once every three weeks at the minute, but usually, it might be just once a week.

And as we were walking back I got really bad haemoptysis just out of the blue completely. I was just like walking down the street. And one second I was just talking to my friend fine about something and the next second I, I was hyperventilating, my breathing went really irregular. And quite a lot of blood came up which was quite shocking ’cause, ’cause I was just saying how well I. The day, just that day one of my friends was asking me how my chest was feeling. And I was like, ‘To be honest it’s feeling really, really good. I know I’ve been stressed out about my essay but I should really be happy ’cause my health is really good. And everything’s really good.

Yeah [laugh] so just as I thought everything was going great I had had the odd bit of haemoptysis from now and again which was to be expected. It just, yeah just as everything was going fine blah, blah, blah. And then I started to have haemoptysis more regularly.

Can you explain to us what haemoptysis is?

It’s coughing up blood. So when it started to happen it was happening when I was feeling my most healthiest. And it kind of felt weird that I was feeling so well yet this was happening. It wasn’t like I had an infection or anything or anything extra. It was just. I found it quite like hard to understand. Like why is this happening when I’m feeling so well? And it happened for a few days and then it stopped and it happened for another few days and my consultant said to me. Well we had discussed what would happen if it continued. And he said, ‘Well we’re going to give it another, you know, another few weeks or whatever. We’ll see how you get on. We’ll see how things go but if it does start to happen again more regularly. ‘Cause I’ve been on some transexamic acid which helps to reduce it. ‘But if it, if this doesn’t work and if it does keep happening, you know, we might have to do something a bit more severe to help it stop. But we’ll discuss that if, if you need it. And he explained that it would be a procedure that would seal off the blood vessels that are causing the problems. And he said that it’s not actually a pleasant experience but it’s something that will help and something that will stop it happening. And I went away that day and I really thought well I, I really hope it doesn’t come to that because it’s not something I really want at the moment. You know, I don’t really want to have to have any time off uni and everything. And I went away that day and I didn’t have anymore haemoptysis for a good three, four, a good month. It just, it just didn’t happen again, not even a little bit, nothing. And I, I was like, ‘Wow like whatever he said must have scared my body to stop and it, it’s not happened again.

And it was my friend’s birthday and we went out and had a brilliant night. We ended up going to the Curry Mile on the way home which is the famous place where all the curry restaurants are in [name]. We went and had a curry at 4 am and then came back and everything was really fine. And the next morning I woke up and I started to have haemoptysis again but it was, it was worse than before. It was quite a bit more blood and it was quite scary.

And the next day it happened again and I spoke to my consultant and he said, ‘You’re going to have to come into hospital and have this procedure done. So that week I went in and I had bronchial artery embolisation which is where they inserted a catheter into my groin which went through it, my main like vein into my, which led through my, heart into my lungs.