And how many times a day do you check your blood sugars?

My blood sugar level, I check it three times a day. I check it as, when I wake up. I check two hours after my lunch and two hours after dinner.

Do there is anything difficult or unpleasant about checking your blood sugar levels?

No sometimes if I do it in the same finger, if I, you know, prick the same finger sometimes it will hurt a bit but it’s not really unpleasant. It doesn’t hurt very much. At the start it did because I wasn’t used to the feeling but now I’m used to the feeling it doesn’t hurt me.

And you record your results of the blood sugar tests?

Yes I record it in a, a book that I have so before breakfast and two hours after lunch and two hours after dinner I record it. And so my doctors can compare every day and then so I know what it’s like, how my level is and if I need to alter my insulin levels etc. And they help me to do that at the hospital.

Thinking about your hypoglycaemia episodes because you said that you had quite a few?

Yes at the beginning when I first came out of hospital I got taught what a hypo was. And I think three or four days later I had one. And it was at home. I started feeling quite shaky. My legs were quite shaky. I started sweating a bit on my back and on like my face and stuff. So what I done is I took three Lucozade tablets and ten minutes later I checked it again and it was a bit higher, my level, so I had a sandwich. And then for about a week I had one nearly every day. Not like terrible ones just a bit of shakiness and sweatiness. But then when I went back to the hospital they, I think they put down my insulin so it was. I wasn’t getting any, I haven’t had any hypos since.

I think initially it was before I minded blood tests more than injections because it was at the stage before they got the blood testing pens. They had a chunkier device and I remember in the hospital they used to keep waking me up irrational times all through the night theres be nurses and they come and do my blood test again. And they just got a bit frustrating that they were doing it so frequently and it was something I completely wasn’t used to.

I don’t think that’s really changed since I’ve change regime. I test quite a lot really because

How often how many times’?

Best way to keep on top it. Well I’ll test before each meal so those three times and then usually before bed when I’m doing my Glargine insulin, just before bed. And then in-between if I’m feeling I’ don’t know extremely angry or thirsty or stressed or something like that, feeling a bit different to normal. Then I might test just to check it’s not been caused by the diabetes and that it’s not due to that.

And how are your blood sugars levels? Have you kept sort of a count of?

In the early years when my parents were controlling everything, it was very, very good like if I went above ten that was an absolute crisis and something really unusual. But I don’t know, I think as I’ve started growing up and getting into puberty and eating various different things and less structured eating times during the day, it’s tended to fluctuate a bit more. I mean, it’s not terrible or anything but there are rather times when it’s higher than it should be and it’s inevitable really, or lower [laughs].

How are your HbA1C?

I think it was about eight last time I had it done so it’s okay.

Well I’m’one of the few people I suppose [laughs] I keep the diabetes record book up-date and keep a record of my dosage I’m giving myself each day, because particularly with my flexible eating regime I’m I could be doing vastly different dosage of my short acting insulin NovoRapid from day to day. So it’s good to have a record. And when I do my long acting insulin then I’ll write down my dosage in the record book. So if I then come to look at it later, if I’ve written it down the dosage I know I’ve taken it. If I haven’t then, I’ll need to do it later.

Interviewee 1’Yeah. I was doing two blood tests a day. And, every time I injected I did a blood test.

Interviewee 2’That hasn’t really changed now. I mean, were only on three blood tests a day now but four injections, so we do four injections a day one before breakfast, one before lunch, one before dinner and we used to do one before bed that, which was a longer acting one but we changed that when we went to Kyrgyzstan to get used to the 8 hours time difference we started to do them, started to do them’

Interviewee 1’Earlier.

Interviewee 2’Earlier and were now doing them at 7 o’clock in the evening, and that’s a lot more convenient and it’s stabilised our blood sugar because we could be going to bed anywhere between ‘

Interviewee 1’Eleven and three.

Interviewee 2’Eleven and three O’clock in the morning.

Do you find anything difficult or unpleasant about checking your blood sugar levels?

Interviewee 1 & Interviewee 2’Not really.

Interviewee 2’Occasionally when you hit a pain centre, it hurts.

Interviewee 1’Yeah, it hurts.

Interviewee 2’And you’ve always got to be aware of staying away from the tips of your fingers.

Interviewee 1’Because you can lose feeling in them.

Interviewee 2’Yeah.

Interviewee 1’If you do, like, I’ve got calluses, well we both have, on our fingers.

Interviewee 2’You’ve got to stay away from the middle of your finger and the tip of your finger.

Interviewee 1’Yeah.

Interviewee 2’Because if you’re typing or writing, tapping something, then obviously your fingers are getting a lot of.

Interviewee 1’Pressure on them.

Interviewee 2’Pressure on them. And you’ve got to stay away from, from using them too much.

Do you have to record’?

Interviewee 1’Yeah.

Interviewee 2’We do. They used to give us books about books to keep our readings in and wed keep them with us. But now we just print out sheets of paper to do’

Interviewee 1’Just spreadsheets and they just have a space for like the date and the day.

Interviewee 2’Yeah.

Interviewee 1’And then you’ve got space for your blood readings, to, to write that down in, so you’ve got like, Before breakfast, After breakfast, Lunch, and so on. And then, how much insulin

No, finger pricks?

I think they’re really important because without them you’d be giving yourself the same dosage of insulin when your body might not even need that. I think that if you keep a check on your blood that is really important, because it shows you what your levels are and if things need adjusting it will tell you when and where. Because if you inject in the morning and it’s really high you know to adjust your dosage, so I think yeah, they’re really important and you should try and at least do them three plus times a day, just to keep them in check for you.

Do you record them?

Yeah. I’ve got a monitoring book. I’m not always good at writing them in all the time, but yeah, I keep a check on them so it’s a good reference for the clinic to look at where you’re going, and things, so yeah, it’s important to write in the book.

I need to ask you a few things about measuring control. How often do you test your sugar levels?

One to twelve a day [laughs].

One to?

Twelve, which is pretty bad. You should only do about four a day but with – it’s just, really, with hypos and seeing where it is and everything, and just checking where it is most of the time, sort of regulate, but it’s up to you really. I’m just a person who likes to be on the safe side, instead of the end of the cliff and but if you don’t want to do tests that’s fine. You can depend on – you can tell when your sugar levels are right then that’s good.

Has this always been the case, or you are testing more now than before?

Oh I’ve tested all the time, because I just like to keep a check on it, so I know what’s going on, and everything, so when I am on my own I know whether I have test or not or I made I’m probably about five, go and get some munch and munch out.

Do you record your reading?

Yeah, yeah, yeah I always record it because it helps you in the long run.

Anything you find difficult or unpleasant about doing the finger prick?

It’s easy, that’s nothing. That’s the easy part of it, I can say that the jab in the night that’s the easy part.

Would you say the same thing for the insulin?

Yeah, it’s all easy. That is the easiest part.

So what would be the more difficult part?

Regulating your sugar levels. That’s the main problem. It’s the key to everything. But it’s just trying to find the treasure chest to put it in [laughs].

Do you check your sugar level?

I checked it so often. I probably do, check my sugar levels five times a day. Which I think is quite unusual. I don’t know if many people check it that much. But as the years go on’

Hmm.

It’s becomes less easy to tell. At the beginning I could really feel if my sugar levels go up or down, I could, as soon as it started to fall at all low, I would be like, ‘Oh, my sugar levels going down,’ but your sensitivity begins to wear off. So now I’m far less aware. And sometimes like last, yesterday I did my blood test thinking I was having a hypo and I just wanted to check and in fact it was really high so I just, I’ve got quite poor at that.

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.

How often is ‘not that often’?

Mostly never.

Tell me about it?

[laugh] I’

When did you start not to test?

I guess a few years ago. Just because I think it [laugh] got to the stage where I’d get like my HbA1C because they were always the same. You know, always good like around seven or below like very, you know, very good. I just, I didn’t. You know I stopped then. And my. I know I should do it but, but my comeback to it is as I said, I know. I can feel if my, if I think my blood sugar is high or, or and I know if it’s going low. And it does sound weird but, and I don’t know if anyone, I’ve never spoken to another diabetic about that and I don’t know whether they think the same but you can feel it with inside you so I just, I use that really rather than actually testing it. And I know it’s, it’s better for like hospital and doctors if they’ve had like my own testing but then that’s what they use the longer-term blood test for so.

How often do you have that blood test?

Every time I go so. I go to the hospital twice a year for a check-up, every six months when they, when they take blood from my arm and that’s what they do there the test from.

But what do you do if you think that your blood sugars are low or high? Do you say ‘mmm would be a good idea to test, just in case?

Yeah, yeah. Or you know if I’m out some where, you know, I can just correct it, correct it myself because obviously if it’s low then I’ll. If I think I’m starting to go low then I’ll, then I can just eat something.

And what do the doctor or other medical health professionals told you about it?

[Sigh] It yeah. It’s hard because obviously they want you to, they want you to test your blood regularly like, you know, twice a day or whatever it is. And I, you know I actually did have, you know, a year ago or something I had, I, you know quite a heated debate with the doctor about it. And he said because hes diabetic as well. And because hes a doctor obviously he pretty, does everything by the book, like he would test his blood twice a day and everything like that and you, you know theres not. If I look at it like directly theres not really any excuse not to do it because it doesn’t take a long time to do and to be honest I don’t know why I stopped doing it because as I said it takes less than a minute. Doesn’t it. It doesn’t take long, it doesn’t take very long but I guess I just stopped doing it because I didn’t feel there was, it was necessary to do.

And I, and I’m not advocating that so don’t worry because I know it’s, I know people should do it but I just, I don’t really.

And what about blood sugar levels? Are you doing those?

Not as much and that. It’s like some days I would go without doing them. I would do them when I felt like it really. And like it’s not something I wanted to do. It’s like, by that time of doing them over the last year my fingers are getting sore and I used to hate doing them. I used to really hate it. At school it was difficult doing it because I wasn’t allowed my blood kit in class with me. It had to be kept in the office so if I did want to do my blood I used to have to go out of class. So I tended not to do it while I was at school.

I never ate breakfast so I never used to do it in the mornings. So it used to be that, at night or if I wasn’t feeling well, really, was the only time I did it. And apart from that, it’s like now because I’ve been in and out of hospital, at one stage I was doing them 6 times a day. But my hands started, fingers, felt like they were about to fall off so now I’ve gone down to it twice a day, doing them, and then if I don’t feel too well, I do them then. But that, back when I was younger it wasn’t, I didn’t do them too often [chuckles] really. And now it’s not something that entered my head really because I didn’t want to do it at school and that, I would be off at lunchtime with all my mates in the dining hall rather than thinking, ‘Oh I’ve got to go to the office and take my blood and everything.

Why couldn’t you do it in the classroom while?

They wouldn’t let me because it had needles, they wouldn’t let me. And if it went missing with other children they’d take it. They didn’t want to take that risk. So they wouldn’t let me have it in the class or even in my bag. It had to be kept in the office at all times.

How many times a day do you check your blood sugars?

I admit I’m not great at it. I don’t do it before every meal. I do it before I go to bed pretty much every night. And if I’m not feeling well I’ll do it during the day. It is once or twice every day. I should do it more. I know I should but sometimes I just forget because I’m running around like a headless chicken trying to get work done, trying to organise things. But if I’m not feeling well everything gets stopped. I sit down and I sort myself out.

What do you mean ‘not feeling well?

If I start to feel like I’m going low, if my head starts to spin, if my lips start to go tingly, my legs go a bit wobbly, if I get a bit hot I’ll stop. I’ll sit down. I’ll do my sugars and eat something. Wait for that to sink in then carry on with what I’m doing. And then obviously check it more. If I’ve not been well I check it more often and if I am ill, saying I’ve got a bad cold or if I’ll check it a lot more often because obviously it affects how it.

Have you always checked them following this kind of pattern or you were more constant before?

When I was first diagnosed I was a lot more consistent. It was four times a day, every day at least. But I said I started, I went through my little rebellious stage as I do from three but I did, I didn’t really know any different but I just started to feel like a human pin cushion.

When was that?

When I was sort of 12-13.

If you start telling me again about your rebellion?

Ok. When I was 12 or 13 I did start to rebel, feel like a human pin cushion and started going, this is just too much. I can’t. I mean I can dip my fingertips in boiling water as it is and not feel it because after 15 years the nerve endings have just gone, putting the needle in there which isn’t a bad thing because it means that if theres no oven gloves about I can get things out of the oven. But yes I’ve always. And then I just started to go well I know what I feel like. I started to get to know my body and especially as what since I turned 16, well 15, 16. My hormones started to settle down. and I did start to recognise my own body and symptoms and how I was feeling. And if I wasn’t right. And obviously with the help of my friends as well, they recognised that if I didn’t which was brilliant because I always had the support there that I needed. If I ever stayed at a friend’s house they always used to make sure. All their parents were as well. All my friend’s parents know they always made sure that I did a blood test before I went to bed. Had a bowl of cereal before I went to bed and made sure that I was going to be alright through the night. It’s not fair on someone elses parents to be woken up by me screaming and having a fit. So I made sure I did then all the time.

What about your like sugar levels, how often do you test those a day?

I’ll be honest and say that I don’t do it [laughs] I know I go to hospital every three months and they say you know you should do your blood sugars but every time I go there they do some [HbA 1C] or something.

[Mm-hm]

Which tests your, what the blood sugars were, average over the last month or something and it’s been like below ten or and below nine the last couple of times so they’re happy with it and that’s without me doing blood sugars.

I mean you don’t, you don’t do it at all at home?

No.

Why?

Well I did that a lot when I was younger but when I was I just got-got out of doing it for some reason.

You stopped doing it?

Yeah.

How old were you when you stopped doing it?

Probably sixteen.

Okay and what was your, what was the reason that made you stop?

Well when I was, [it just started my fingers] it just like when I was younger, when I was in primary school, I did it a lot and my fingers always had these like blotches on them where you could see where the needles been and like you know I don’t like that, I know that’s not a really good [laughs] excuse but it’s not nice, so.

I’m a very stubborn person so I doubt anyone would convince me but I don’t know, when I go to the hospital they say oh do some blood sugars, I do it for like a week maybe and then I stop [laughs], it’s just habit.

And what did they say about why it is important doing your-your blood sugar levels?

He said it’s important because [clears throat] of the complications you can get later in life, you can have your foot amputated and your, you can go blind and so that, when you hear that it’s quite scary and when you go to get your eyes tested and see all different kinds of types that you could things you can have wrong with your eyes, that’s quite scary as well there are two that I saw though that can be cured but still it’s not nice is it?

And despite these you?

I still don’t [laughs].

I just got into a habit of not doing it [laughs] it’s not really unpleasant it’s just like I’ll, the waiting and not wanting to look at the results because if that, you might think oh I feel like this and then your blood sugar’s fifteen or something, you think [sighs] if theres about, it’s like, it’s like an exam, you know waiting for oh how well did I do and then you find out it’s not as good, you’ve you’re an A plus or you’re a U or [laughs] you don’t know.

I told my doctor about it and he-hes happy because of the HbA1C and it’s below-below ten so I could, the last one I think was seven point something which was perfect, he said your blood sugar’s supposed to be between four and eight, which it’s quite good so and then he told another woman that was in there in the room and that’s without her doing blood sugars, so he was really impressed with that, so hes happy, I’m happy [laughs] so I continue to do it.

Now you, how many times a day you check your, your sugar levels?

[Sighs] I admit I don’t do it as often as I should but I do try and do it with my breakfast and before I go to bed, and then during, during the day if I don’t feel very well at all but my doctor yesterday actually said if I can get my glucose, blood glucose checked two hours after my breakfast then I will have a better idea of how much insulin I actually have. Because at the moment I am actually giving myself a dose of insulin on the basis of what I’m going to eat, so if I’m gonna have a fairly, a large lunch if I’m out and about with my family and friends or with [name] then I will have a, obviously a larger lunch, whereas if I’m at home I’ll just have a sandwich and something quite small and then obviously a snack sort of mid-afternoon. So I will actually give myself insulin on that basis but my doctor has said that it would be better if I know exactly how much insulin to give myself so if I do my, my blood sugars two hours after I have a meal then I’ll know, you know, what I’m supposed to be, supposed to be taking.

There haven’t been sort of periods in which you, you haven’t?

[Sighs] I think [sighs] during my rebellious days, if I have a rebellious day then I won’t do it, I’ll just say, ‘No, I know how I feel. You know, I’ll just, I’ll take it when I want to. But at the very end of the day I’m not doing myself any favours so I don’t [laughs] I don’t have days like that very often because I’m thinking, ‘Well now I’m a little bit more grown-up, a little bit more mature. I’m thinking, ‘Well it’s not just today I’ve got to think about I’ve got to think about tomorrow as well and what complications I could be causing myself later on in life. Because as I look around when I go to clinic I see lots of elderly people and they’ve got walking sticks or they’re in wheelchairs or, you can quite clearly see that they’ve had problems with their feet. It’s like I say shock tactic, I’m thinking ‘well in sort of forty, fifty years time I don’t want to be there, I wanna be able to, to run around and enjoy life and still be able to do all the things I enjoy doing later on in life, so I’m not gonna do that to myself now. So I think to, to look after yourself and to, to actually take care of your illness then, you know, do it now and so then you can still carry on having fun when you’re older.