And your blood sugar levels you were also testing them from what age?

No. I, until about a year ago, maybe, maybe that I never did blood sugars, never.

Tell me about that?

Never, [laugh] never, never for like years, I never did.

Your mum did them for you?

Sometimes my mom would do it with me when I was like really low. She could see like I was really high and I wasn’t feeling good or something but I didn’t like to use the machine because I have a phobia of the noise. Is, I think it sounds like a gun, you know. [chooo] I can’t use it. So I would just take the lancet and I would, you know but it really hurts your fingers especially. I play guitar so my fingers are really, they get sore. So until about a year ago I found this machine that it does it on your arm. You press and it like it does a suction and it does it for you on your arm so. And theres no bang. There is no noise.

What’s the name of the machine you use?

Yes. It’s Acutech softsense.

Who recommended it to you?

It’s quite big. My nurse. My nurse has been. She, she thought maybe I should get psychology or something because I, it was like a phobia I had from all the time. I couldn’t, I can’t touch them, you know I think it’s like. So, but I said no it’s just something that I can’t get used to. So she found this machine for me and she said, ‘Ah this is for you.

Tell me, do you remember until when you have the tests done by your mum?

All the time. I never did them myself never. Sometimes I do. I would do them when I was like, whenever I felt bad I would do a blood test. Either I was too low or I was too high or something I would do a blood test.

But those were the only times?

Only times yup.

So there was no pattern, there was no once a week or once a day or?

No. No, no. I could go three months with no blood sugar.

But your mum would be sort of doing it in between or not?

She would try but I didn’t like to do them. I didn’t want to know what I was, you know. But she would always try, you know what I mean, try and doing it and [hammering].

But on the other hand you have been very good with your insulin, taking insulin?

Taking insulin I’ve been fine with. You know, take my insulin, that’s yeah. I do that. It’s the blood test that I [laugh] but not any more. Now I do at least twice every day.

So what has changed? It’s just that they’ve found this machine or something like that?

No I don’t. I don’t even use the machine anymore. What’s changed is that I’m. I have, I’m soon going to, you know, responsibilities, you know. It’s not just me. I, it’s not just me in my life. I have my family. I need to be healthy for my family. I need to be healthy for, you know, please God, my boyfriend and my husband. I need to be healthy for my kids in the future. You know, it’s not just me. It’s not, you can’t, you know. You have a responsibility. You have to be healthy for. Theres other people that need you in the world. You know.

I got coeliac a couple of years ago and I also have like a skin condition which they sa

I got celiac a couple of years ago and I also have like a skin condition which they said is, they call it scleroderma diabeticorum. So it’s, it basically means I get thickening of the skin. And they said it’s because of, you know, when your blood sugars are really high. And also I had they found something, some blood vessels leaking or something in my eyes. So all these things are something like a wake up, you know. Wake up call that you need to, you know. You need to take care of yourself. Your health is very important. You need to be healthy and look after yourself. So all these things are suddenly coming to me and I got diagnosed with this and that and that. So that was kind of, ok I have to do something now.

What was your attitude before? I want to understand that bit when you were not taking good care of yourself?

My attitude was. It’s like me, I was walking and my diabetes was coming behind me. It was like I wasn’t pushing it away. I didn’t think, ‘Oh I don’t want it, go away. I didn’t mind if it was there but I’m not taking care of it. You want to come with, come but I’m not taking care of it. You know. Because like I didn’t mind it was there. I didn’t ever have like, ‘Oh why me? or ‘I hate this,’ you know. It was never like that. If, if I have it fine but you. I’m not going to look after it. I’m not going to take care of it, you know. If it wants to be there I’ll do my insulin and I’ll do basics to survive, you know but no extra care, not extra, you know.

But now it’s kind of like I want to make my diabetes, you know, like here like you know, like come together so that I know what I’m doing and it becomes like part of me, you know. I want it to be that I’m more in charge and I. It’s not something that I just do my insulin. I forget I have diabetes for the whole day [laugh].

I think so, I don’t know. I can’t really think about what the reasons why I didn’t, you know. I just, I felt. I didn’t feel it was important enough. It wasn’t important enough to me. It doesn’t, then a couple of years ago it didn’t matter if I did my insulin or I did no insulin. I didn’t care if I felt bad or I felt good. I didn’t, you know it wasn’t important. I didn’t feel like it’s important to have good control and to eat well and to be healthy. Wasn’t important to me.

During your travels abroad, are there sort of situations or issues that might affect the control of your diabetes?

Nothing. I didn’t even for once think about not travelling. It was, I didn’t once think that why couldn’t I travel like anyone else. What’s the difference, you know. Ok theres small things when I was in Iowa it was snowy and freezing cold. If I had my pen, like just outside it would, you know, start freezing. So theres small things like that. And in Israel it’s very hot so I had to always keep things in a fridge. And it’s small things but theres no problem, you know, no problem travelling. You can, you look after your diabetes here you can look after your diabetes there. Theres no, theres really no difference in, you know the care there as long as you have someone there who you can contact, that you know like where you’re staying theres a doctor nearby or, or you can be in contact with your nurse here in England. As long as theres someone where if something goes wrong you have someone to call. You have someone to, you know theres.

The team here did they give you advice?

Yes, they, yes they helped me to find doctors in the countries that I went. And also where ever I was abroad I e-mailed my nurse here. I had questions and things and she, you know. Even though I was in another country she was still my nurse. I was still, you know, in contact with her.

Let’s talk about you and your travels because you are someone who has travelled a lot?

Yes, I love travelling.

[Laugh] Yes. How do you manage your diabetes? What do you have to do before you travel and while you are where ever you are?

Yeah. Well first of all is that my Mum always sent me my insulin from England, always. So I never, where I was, I never had to. Even where I was in Brazil they didn’t even make the insulin there, the insulin that I use. They didn’t even make it there. So my Mum always sent back to me my insulin from here, with friends who were coming or you know in the mail or something. Also it’s very important I have, where ever I went I had a nurse or a doctor or someone where I could, you know, be in contact with in each country. So that was also very helpful.

What about did you have any language barrier in Brazil or no? Do you speak Portuguese?

Yeah well we had to learn how to speak a little bit, yeah. No one speaks English there. [Laugh] no one.

Were you [noises] sort of was it possibly good enough to talk to a doctor and discuss any symptoms or worries that you might have?

My doctor’s English was about as good as my French or Portuguese so we, you know, we managed to communicate. You know. So it was ok.

Tell me about diabetes care when you were young, when you were little?

I don’t really remember, remember but I know I changed, I moved hospitals. I was in one hospital and it was and I think I was around twelve or something and my mother was very upset with the care there. There was no help from any other people. It was just there was one doctor. We went there. He was like, how is your blood sugars and I’d show him. This, that and that was it. You go home, see you in three months. There was no diet, you know, dietary people. There was no psychology. There was no nurses there that you can call anytime and speak to. The nurse I have now. I’d call her anytime. I e-mail her and theres. It is more close. You know they’re more like family you can speak to them whenever and ask questions and they’re more, much more helpful.

This was your first hospital was a non-university hospital?

Yes. Yeah.

Now in the hospital, you have been at the present hospital since the age of twelve?

I think around, maybe a bit later, thirteen or something but yeah.

So you are attending a young peoples clinic since the age of thirteen?

Yeah

What about the communication with your doctor?

It’s very good.

Yeah?

[mm huh]

In which ways?

My, I don’t really communicate with him I more communicate with the nurses. So hes. Hes a very doctor and you know I come there for appointments to see him but if like I’m at home or when I was away in the States or something I would always e-mail my nurse about, you know, what can I do and, you know, things like that. And she was always, you know, always replied and always, you know. She was always there so that was really nice.

What was their attitude when you were not controlling [laugh] your diabetes that well? When you were not doing your blood sugars tests?

I think once I moved to the Adolescent Unit I think that’s when I started to, you know. It was uphill from then. You know, it started from one blood test a week to two blood tests a week, you know. We started from that so I think from, when I moved to the Adolescent Unit it was like a whole team. They were like, you know, you are here now and you have to get here so were going to help you. You know. So it was always uphill from there.

Ok so you had this support?

Yeah. From what I remember, from what I think is in the other hospital there was no, you know, there was, they weren’t trying to make me do more. They weren’t trying to, you know, give me any responsibility, you know. In, in the hospital I am now they said listen it’s your life. You have to take care of yourself. You have to, you know, you have to be in charge of what you have and take care of it. So that’s what I am doing.