Interview 18

Age at interview: 17

Age at diagnosis: 1

Brief Outline: She is on analogue long-acting insulin (glargine) and on a fast-acting insulin; NovoRapid that she injects with her meals. She highly recommends this insulin regimen because it is flexible and you can eat what you want and when you want. In her experience diabetes is more difficult to control when you are a teenager because of the hormonal changes. She experienced heavy periods and her doctor recommended a contraceptive pill (Microginol) to help with the problem. Last year she did a three-day hike in the Peak District and says that you can definitely do sports if you have diabetes. You just need to plan ahead.

Background: She is a full-time student and lives with her parents. She is a keen sports person and currently she is training for the DofE gold in canoeing to take place in Canada next year.

She has been inspired in her own life by the achievements of people with diabetes and feels no...

I think things like this is a really good idea because [laugh] I'm not just saying that because I'm doing it that it's an interactive way, a new way I mean because you use the Internet. I mean that's always good. It's a direct approach to children with diabetes. I mean the magazines like 'On the Level' which is for teenagers and there's one for younger children as well, that's always good because you have interviews with famous people who have diabetes and how they managed. And that's always good because I mean you look up to them as role models and you think I know that person, they can cope, they have a good career. I can do that. It's not going to affect me. So things like that do definitely help. I think just generally seeing how people get on in life and how. Well for me it doesn't really affect me and just knowing that you can do things. I mean like Steve Redgrave, he's an Olympic champion, five gold medals and he's diabetic. It doesn't really affect him does it [laugh].

So he's an inspiration?

Definitely yeah, I mean people like him and also last year I went to talk on satellite phone to this man who had gone to the South Pole with diabetes. And[laugh] I was talking to him about how things like how he stops his insulin from freezing. And it really is an inspiration because I mean what's going to stop you going from the Pole, to like from the North Pole to the South Pole walking all the way. I mean obviously there's like monetary constraints and time and like your job but you can't use diabetes as an excuse to stop you doing things like that. 
 

She did seven blood glucose tests daily to find out why she was having frequent hypos.

Oh I did a test a while ago to see if my injection, my insulin regime was working and I had to do seven blood tests for a week, a day, to just make sure that everything was working. So I did one before dinner, one before breakfast, after breakfast, before lunch, after lunch [laugh], before dinner, after dinner and before bed. So it was quite a few but it. That was only for a week and just a test to see if the insulin I was giving myself was working. Turns out it wasn't but [laugh].

I had to yeah do finger pricker tests and put that into my meter which is the best meter. It's really small.

And that told you what, that you were not absorbing the insulin?

That told, yeah that told me that I was doing the insulin after the dinner and I was doing enough insulin but it wasn't working because it wasn't being absorbed because of the resistancy. So yeah.
 

Says that there is never going to be 'the perfect diabetic'.

I do have hypos yes but not as commonly as a few people that I know do. Because some people I know hypo quite a lot. I know there are about four diabetics just in like within a mile of where I live [laugh]. So this other person, his parents used to control his insulin so much that he was like almost constantly having hypos when he was really young and that's really not good because you can get brain damage. So [laugh] it's good to be high sometimes, well not high but in control.

What do you mean 'in control'?

Well the ideal blood sugar is between 4 and 10 but I mean it's really hard to keep in between that all of the time. So I mean you're never going to be a perfect diabetic person [laugh]. You're always going to have a hypo or you're going to go high or something like that. 

Can you tell me how you feel when you're having a hypo or you go high? What is sort of?

When I have a hypo I first, I tend to feel very weak and you get hot or cold flushes and sweats. I tend to forget things, forget words, how to say things properly. And sometimes if I'm like in a lesson or something and we're having a debate say. I get fixed on the debate if I'm going low and I'll just like argue my point to death [laugh]. I really will and I'll get fixated on the subject until I get better again. It's generally like feeling anaemic if you've ever been anaemic which I have [laugh].

But no high is much different, you feel really thirsty and you can drink all you want but you will still feel thirsty. And you get headaches and you feel, well I feel a bit sick sometimes so not very nice but. Low is better as long as you don't go too low [laugh] because you can eat things when you go low [laugh].

I think doing blood tests regularly is the way to controlling your diabetes well because then you know whether or not the insulin you've done has worked. I mean don't do blood tests all the time. Don't do seven a day [laugh] because that will just be painful but'

How many do you do a day?

Normally I have to do three or four a day which keeps you, tells me how much to do, how much insulin to do, what to eat or what you can eat. Things like that.

Listen to the patients. We have valuable input.

They should know that we are people [laugh. We're not just a subject and it might be perfect if you put this amount of insulin in and the result of blood sugar comes out perfectly. It's not going to happen. I mean [laugh] you can try but it's not going to work like a well-oiled machine. It's the human body and things are just naturally going to be different and go wrong and sometimes you can't explain them. And you really have to treat us like people [laugh]. And be aware that ok we might not be qualified doctors but we also have an idea of what's going on and we have a valued input so just try to talk to us [laugh].

So you, that would be one message I mean take us as part of the team?

Yeah. I mean don't view us as 'the patient' see it as a team. It's definitely, it's not just the doctor telling you what to do. I mean doctors, ok they have a pretty good idea of what you should do but yeah listen to the patient because they might know something that you don't so.

Says that her diabetes control has been affected by puberty, she experienced very heavy and...

You said that your control is not very good. What did you mean by that?

Well my control, yeah is not very good and it's mainly because going through puberty your diabetes will go haywire pretty much. And then I had the whole feminine issue to deal with as well. So it wasn't the best and so on about, when you're say eighteen, nineteen, twenty your blood sugars sort of just naturally start to level off. Things like that. So yes.

So this is a particular tricky period?

Yeah.

They definitely fluctuate every month to, with my period. It's strange [laugh]. Yeah they go. Generally I get low, lower when my period comes and then higher afterwards. So I just adjust the insulin, have a bit more to eat, things like that.

Did the diabetes care team tell you about it? 

Yeah the diabetes, they have. They've helped a lot. Yeah they told me what to expect. How to deal with things like that. That was very good.

I'm on Microginol which is the pill because the diabetes complicated being a teenager. And long story short it mucked up my periods [laugh] and so I'm on the pill just to get that straightened out. And the pill's quite good because it's small and you don't really notice it. Yeah but Metformin is not so good. I'm not really on anything else I don't think [laugh].

What do you, when you said that the diabetes sort of had influenced your periods or messed them around what did you mean? What happened?

Well. Ok. First period I had was three, no four weeks long. It wasn't like what, it was continual but it, it went from like heavy to light and intermittent. And then it stopped. The third period I had was two months long, constant heavy bleeding. Wasn't the funnest thing ever. And, and that's when I was just like, ok stop. I can't take this anymore. So they put me on the pill to sort out my periods which stops long periods and it just makes, it makes it much equal, much more equal because the pill decides when. Well when you take the pill and when you're off the pill you, you have the periods. So it decides when you have your period and obviously you have to take it every month. You have to take a pill a day for three weeks and then you're off for a week and then it continues. 

How did the doctor explain to you the connection between diabetes and your periods being so, lasting for so long?

I think generally it's because diabetes just plays havoc with your hormones and also because I'm insulin resistant it didn't really help and everything. 

So you taking the pill [correction] has helped?

Yes definitely [laugh]. Yes. The pill [correction] is good. If they want to put it on it, go on it [laugh]. It's definitely good. It doesn't have any side-effects that I know of that affect me whereas Metformin does but I mean it's ok.

And for how long do they reckon that you need to be on the pill?

Quite a while. They think I should be on it until I'm about mid-twenties just to make sure that I've got a steady cycle going and everything.

She experienced very heavy and lengthy periods until she was put on a contraceptive pill.

You said that your control is not very good. What did you mean by that?

Well my control, yeah is not very good and it's mainly because going through puberty your diabetes will go haywire pretty much. And then I had the whole feminine issue to deal with as well. So it wasn't the best and so on about, when you're say eighteen, nineteen, twenty your blood sugars sort of just naturally start to level off. Things like that. So yes.

So this is a particular tricky period?

Yeah.

When you got your period did you notice any - or around the time of your periods do you notice sort of your blood sugar levels are either going up or down?

They definitely fluctuate every month to, with my period. It's strange [laugh]. Yeah they go. Generally I get low, lower when my period comes and then higher afterwards. So I just adjust the insulin, have a bit more to eat, things like that.

Did the diabetes care team tell you about it? 

Yeah the diabetes, they have. They've helped a lot. Yeah they told me what to expect. How to deal with things like that. That was very good.

I'm on Microginol which is the pill because the diabetes complicated being a teenager. And long story short it mucked up my periods [laugh] and so I'm on the pill just to get that straightened out. And the pill's quite good because it's small and you don't really notice it. Yeah but Metformin is not so good. I'm not really on anything else I don't think [laugh].

What do you, when you said that the diabetes sort of had influenced your periods or messed them around what did you mean? What happened?

Well. Ok. First period I had was three, no four weeks long. It wasn't like what, it was continual but it, it went from like heavy to light and intermittent. And then it stopped. The third period I had was two months long, constant heavy bleeding. Wasn't the funnest thing ever. And, and that's when I was just like, ok stop. I can't take this anymore. So they put me on the pill to sort out my periods which stops long periods and it just makes, it makes it much equal, much more equal because the pill decides when. Well when you take the pill and when you're off the pill you, you have the periods. So it decides when you have your period and obviously you have to take it every month. You have to take a pill a day for three weeks and then you're off for a week and then it continues. 

How did the doctor explain to you the connection between diabetes and your periods being so, lasting for so long?

I think generally it's because diabetes just plays havoc with your hormones and also because I'm insulin resistant it didn't really help and everything. 

So you taking the pill [correction] has helped?

Yes definitely [laugh]. Yes. The pill [correction] is good. If they want to put it on it, go on it [laugh]. It's definitely good. It doesn't have any side-effects that I know of that affect me whereas Metformin does but I mean it's ok.

And for how long do they reckon that you need to be on the pill?

Quite a while. They think I should be on it until I'm about mid-twenties just to make sure that I've got a steady cycle going and everything.

She talks about the attitude of all her schools and says her present school is brilliant.

What was the attitude of the teachers?

Mostly they were really good especially in my first school, teachers were excellent. They didn't like pay me extra attention because I was diabetic and like make sure, well they, they made sure I had as, I was fine and that I was eating things like when I needed to. But they weren't always like picking on me and making me do things because I'm diabetic. 

My middle school was ok. I wasn't allowed on the netball team because I thought, they, they thought that I would. Oh I might collapse or have a hypo at things and something like that. And I wasn't allowed to, yeah, things like that sport and I wasn't allowed like the main part in a play because they thought I might have a hypo during a performance. But that was at my middle school and the teachers generally there were ok, I mean especially the head master. He let me go to France [laugh] which was quite good, on a school trip but no, that was ok. 

But my current school is brilliant. I'm doing DofE gold at the moment which is like the most exercise you can do. I did bronze in Year 9, no Year 10, Year 10 and silver I did last year which was [laugh] three days hiking in the Peak District so you can definitely do sport with insulin and diabetes [laugh]. But no, I had to do careful planning for that but it was achievable definitely. But now I'm looking forward to going to Canada in 2006 canoeing for DofE gold. 

So yeah, my current school has a very positive attitude towards it. We have I think about three diabetics in my school and you're not treated any differently or anything. It's just a thing that goes on. I mean all my friends know that I'm diabetic and they know that if I start being like grumpy and moody and things like that they know I'm going low and they'll make me eat sugar [laugh] or if I'm high they'll make me like run around which is fun [laugh]. But yeah it's very good.

Oh in middle school I was 8 to 11, between those ages.

How does it make you feel, how did you feel at that time?

I felt angry because I mean I'm not different. I can handle myself. I know when I'm going low and I'll stop and I'll say 'Hey I need sugar, I need Lucozade or whatever'. And I did feel annoyed that they thought that because they were the teacher they had control over me and they thought they knew what's best with me when they really didn't. And so. But I guess they were just trying to cover themselves in case I had like a seizure or [laugh] whatever. 

Do listen to what your body is telling you and back it up with blood glucose tests. Do look after...

I think [pause] definitely listen to what your body's telling you because ok it might not always be right. And you have to properly back it up with blood tests but if you feel low and you don't have access to a blood test meter kit immediately and say you've just eaten a massive meal. You still feel low. Your body's telling you, you feel low well listen to your body. Have sugar. Doesn't matter that you go, maybe go a bit high you can do insulin later but generally I say listen to your body. Do blood tests to back it up but your body does, or mine does tell, tell me when I'm high or low and things like that and what you should do.

Don't worry [laugh]. Really it's' My friend thought she was diabetic because she was going to the toilet a lot, drinking a lot, having headaches sometimes. And she was really scared. She was like, 'No I don't want to be a diabetic'. She thought it was a real burden. And I guess at first it does seem like you're doomed for life. You, [sigh] you might have your, if you don't look after yourself you might be blinded or have your legs amputated or not be able to have children but if you think about it everyday life is like that. And you could like step out of your house and be run over by a car. So it's not the worst thing that can happen to you. Seriously it, it may seem like a big thing but you don't have to do that much in comparison to what some other people have to put up with so. It's not that bad.