I think probably when I was in between 14 and 17 I was a bit like ‘oh, sod it’ [laughs], ‘I’m going to do what I want’, and probably was a bit more detrimental that I should have been, and then it was like ‘Oh it’s not as bad as I thought. I think at the time I had people telling us, that you need to do this, you have to do this and you know, you’re not going to live as long as this, but then, as I came out of that like time, and I was like, well actually, I’m not as bad as I could be, I’m doing quite well, and this is what I want to actually do and go to university. I do eventually want to do a PhD and lecture at Uni, so, I want to be a ripe old age [laughs].

I think in a way everyone rebels at that age, it’s teenage, you have to do it. I think you find yourself at the same time, so you’ll find when you do get out of that stage, you have to go through it, because then you’ve done it, I’ll say, ‘I’ve been there, I’ve done that. And then you come out and you’re like, ‘right this is actually what I want to do and you do, you do need someone there that’s pushing you in the right direction, being an absolute nag, pain in the arse, you don’t want to do it, but someone that’s constantly pushing you in the right direction.

That’s usually the Mum?

Hard love. It wasn’t actually my Mum, it was more my Dad, and probably my healthcare professionals like my nurses, my doctors, kind of.

So in a way they ‘

I think they put up with it a lot. They put up with us being that way, but then got serious ‘right you need to stop doing this.

I mean around that age there is non-compliance with treatment.

Yeah, great problem.

I went through like a stage of just really being annoyed. I just thought, ‘Oh, why have I got this? This is so unfair. What have I done to have this? Why do I have to take my tablets? Why do I have to take my painkillers?’ And I went through a stage where I wouldn’t take no tablets at all. I wouldn’t take no painkillers, I wouldn’t take any pain relief. I wouldn’t do my exercises. I just thought, ‘No, if I don’t do it, it will just go away. And when I actually did start taking my tablets regularly again I did realise what a difference that it actually made. And I just thought, ‘Why was I such an idiot? Why did I stop taking them all?’ But I thought, ‘Well, if I’m not taking the tablets, then it won’t exist and it will go away.

How old were you when you stopped?

I think I was about 18 I think. You know, I didn’t take my tablets for months. I just wouldn’t take them. And it was only when I went, I finally, I went to the doctor’s and said, ‘Oh, I’m in so much pain. I can’t cope no more. And I really did get depressed. I was really really low. And they said, ‘Well, take your painkillers. I said, ‘I’m not taking painkillers for the rest of my life. And she went, ‘Why?’ And, ‘Well, because I don’t want to take them. And she went, ‘Why don’t you want to take them?’ She went, ‘For God’s sake, it’s one tablet. Take it. And she just, it was just like her bashing my head against something. She just, I don’t know, she just really sort of knocked it home that, ‘You have to take your tablets. And just because, just because you take tablets it doesn’t mean you’re a bad person. It doesn’t mean that you’re not coping. Because that’s what I felt as well, ‘If I’m having to take painkillers I’m not coping. I just had to have a bit of a stern talking-to in the end.

If you don’t take your insulin you’re gonna go high and, a lot of my problem when I was younger is I was very much forgetting to do my insulin.

Why?

Oh I think it was more to do with a lessons, up until I was about fourteen I done my insulin on time, I set my times so I did it every, sort of, well so I done it every time I ate pretty much with my insulin, with my meals I had insulin, and that was, that was okay and then when I got to about fourteen I think I just, I got out of the routine and I, at school was a big problem for me ’cause it was changing my lunch hour and from what I’d been used to before I was having lunch later and I was taking on school activities and not like eating to about one, two oclock and it was like right from my lessons so, I was eating and then forgetting to take my insulin and after that, to, for about a year and a half, two years I was in, I was out of a regimen completely and my diabetes got very uncontrolled and now I think I’ve got back into the regime and I’m doing a lot better for myself, my diabetes is in control so.

How many times were you injecting at that time?

At that time I was injecting every time I ate, say three times with my meals plus one before bed which was a different insulin.

And you were sort of forgetting to do the one at lunchtimes?

I was forgetting to do the one at lunchtime and then after a few months it was the one at breakfast time [laughs], and it was just, I’d gotten into a way of having my insulin put, perfect for all these years and then suddenly I changed and, it was, occasionally a few at my dinner time, occasionally my lunchtime, occasionally my bedtime and that caused a lot of problems for me.

And at school why were you forgetting to take, to take it?

I think it was more that I was in a rush, I was doing lunchtime activities, right I did gymnastics at school and they, they were finishing sort of as lunch hour finished, and it was a case of get dressed and have my lunch and get to lesson within five minutes and that was, it was a rush and I think that’s pretty much what started everything. And then from there you just, I pretty much just kept forgetting when I was going out with friends or if I was staying over a friend’s house, and then when I was coming home, like from a friend’s house I’d, it’s kind of you get out of the regime and it just, you can’t get into the regime and so at home you have the same problems and you still forget and, in a way you kind of get lazy [laughs] as, you just forgetting to have your insulin.

Yeah I was injecting myself. I think my parents only ever done one injection on me. And that was to check that they could, just in case I was ill or something.

Who taught you how to inject?

The hospital, [name] hospital, very good in teaching me all the things, like the day I was diagnosed I did my first injection in the evening; they really helped me with that.

Okay. Do you inject every time you eat or you forget sometimes?

I inject every time I eat, I forget very occasionally, but that’s becoming less and less now.

So it was more frequent before.

Yeah, I’ve had a few times where I’ve forgot quite a bit, but now if I forget then I just feel ill later. So it’s better just to remember.

Okay, so how old were you when you were forgetting?

Um.

Forgetting the injections?

I don’t know really, I think it’s happened a few months back as I went through quite a bad phase and I was forgetting quite a few. But not as much now.

Why do you think you were forgetting?

I don’t know it just slips my mind. And now I’ve got into a routine, as a habit at the table, just before I eat so that I can’t forget it.

What did you find difficult with the other routine?

I had to have snacks every couple of hours which wasn’t very healthy, and gets quite annoying as I had to keep remembering, but now I have a lot more freedom, I can eat within reason as much as I want and still do an injection for it. Whereas before I could only eat certain amounts at set times. It’s a lot better now.

Sometimes you feel tempted to do more than you should?

Yeah I’ve, sometimes I feel tempted to enjoy myself more than I should and maybe put. Well it’s kind of hard but like for example in the summer when I was travelling for the first time in about ten years I didn’t do my physio, just for one day. I woke up late and it was a really hot day and the air conditioning wasn’t working so I was fed up and I was like, ‘Oh I don’t want to spend the next hour in this hot room doing my physio. I’m just going to, I’m just going to go to the beach. And I’ll do my physio later. And that’s what I said. But when we were on the beach one of my friends, she wasn’t being mean or anything. She said like, ‘Do you want me to help you with your physio?’ And I was like, ‘Oh I’m not in the mood, like I’ll, I’ll do it later. And the day got later and then it ended up that we were going out for a meal at about 7 oclock or something and I hadn’t actually had time to do my physio. And so I said, ‘Well I feel fine, like my chest doesn’t feel that bad like. I will just leave it for today. I won’t bother doing any. And I didn’t.

And the next day when I woke up in the morning just like my chest was so tight and my breathing was so much more difficult and it was so like. It was just really. It just, everything felt so much effort just to like do little things. I thought, ‘Gosh it just shows what missing one, for me personally what missing one session of physio can have an effect on. And it took me a good two or three days to get my chest back to normal. So at uni, like my main priority in the morning, I would never wake up and go and do something different. I always wake up and do my, my physio because I could never, ever. I know what happens if I miss it.

So I always put my physio first and almost always put my nebulizer first. There will be the odd time when I’m rushing to go out somewhere or do something. I haven’t had a chance to do my nebulizer and I will literally just think, ‘Well I’ll just miss one dose of that for now. So it’s kind of almost prioritising. You know what’s good for you but it’s, it’s almost prioritising, getting your right priorities right. I mean is it essential to do a nebulizer when everyone’s waiting for you and you’re in a rush and it’s just one dose. Well I think sometimes it’s not 100% essential. Other times, I mean because I’ve got this nebulizer because it is so small and so portable I sometimes do it on the bus on the way to university. And people might look at me and think, ‘What’s she doing?’ But I don’t care. I mean it’s saving me ten, fifteen minutes which in a morning when I’m in a rush is, is a, is brilliant.

Yeah, one of the things that they prescribed for me is steroid cream and I’m wary of that because I know that in the long term it thins your skin and most of the places I’ve got eczema are like places where your skin is very delicate anyway, like inside of your elbows or eyelids. And you think, every time I’m doing this my skin’s, you know, going to deteriorate, you know, use it. And I think, well what’s, what’s it going to look like in 20 years when I’ve been using this steroid for that long, since, you know, I was in my early teens.You know, so that’s kind of a long term side effect.

In the short term, steroids are really good because they just make everything feel like it’s gone away for a little while, because they you know, take the inflammation away. So, yeah, they, that worries me a little bit.

So that’s the main one?

The only other one is things that have been prescribed to me that aren’t suitable to me, things that are really oily. Or water-based things. They’re just, my skin just, it just sits on my skin and aggravates my skin more because it obviously, it attracts dust and things and just really irritating. So, that’s like a short-term side effect. Which is just led me to not using them basically.

And what has the doctor say, regarding the steroid cream, the long-term effect? Has he said anything about it?

No, it’s not something I’ve asked about for a long time. I’ve said I’m concerned about using this on my eyelids and they’ve said, well use this really strong thing for a little while and then stop using it. So they don’t recommend that obviously long term but eczema recurs and recurs so you end up using it long term.

Have you found any kind of natural product that helps?

I’ve heard of things but I haven’t actually used them. Like different, like linseed oil you’re supposed to take, like having a daily intake of linseed oil and, is it starflower oil? And evening primrose. Probably some fish oils but I’m vegetarian only, so, but I haven’t, I think the cost of those, having to buy those from I don’t know, a health food or, you know, kind of related shop, puts me off because they’re just, they’re a lot of money.

Yeah.

I’m a student [laughs].

Were you six, seven?

Sarah’No I haven’t had them since then. Since I’ve been on the methatrexate, since I’ve been on, thirteen yeah.

And you can’t get pregnant on these tablets at all because it can. The baby that’s growing inside will be deformed in some way ’cause they are really strong. And, but now they said that I can have on occasions a little bit of alcohol but not to the extent that you are really drunk [laugh].

One of the consultants said that she normally puts people on the pill who are on these tablets for the contraception but, I’m not [laugh].

Were you with your mum when she told you that or?

Sarah’Yeah and then the lady took me into the other room then and asked me discussed with me and asked me what I wanted to do.

Mother’Boyfriend and things like that.

Sarah’Yeah. Like if I had a boyfriend and if I was sexually active or anything.

So they tried to find out?

Sarah’Yeah.

In order to prevent any kind of

Sarah’Yeah.

‘pregnancy that.

Sarah”Cause they said it wouldn’t be a nice experience for me to go through because of then being to keep the baby ’cause they would be really deformed.

Ok so they made you aware of that’

Sarah’Yeah.

‘from the very beginning?

Sarah’From the beginning.