Diabetes type 1 (young people)

So went home and started doing the two injections a day. And again it was, they, the doctors put you on a regime which is kind of more normal which isn't kind of, which doesn't bring your blood sugars down quite as rapidly so, because you've had a prolonged period of high blood sugars, the insulin that they were giving you was kind of more for a long term basis than for a short term. And I was just, there was one night I remember whereas, where I was testing my blood sugars, again which you know it's, that's probably the thing I don't like the most about diabetes, but anyway yeah testing my blood sugars and my blood sugar tester machine had readings between 1.3 and 33 and anything lower than that it just says low and anything higher than that it just says high. And I remember testing blood sugars when I was at home and I got a reading of high and I was doing everything that like the doctors and the nurses had told me and I was looking at this, them and thinking how can it possibly, how can this possibly still be high, it was like started thinking, I remember thinking, thinking to myself I've got one of those really bad types of diabetes which can't be controlled properly. 

And but again that sort of, that sort of changed like after a while and was just, just became part of the normal. I mean I had, I had friends and family supporting me you know the main, the main thing for me was the fact that the doctors were saying to me one of, one of the best ways of monitoring yourself and making sure that your blood sugar levels stay stable is eating three regular meals a day and obviously taking your injections when you have those meals and things like that. But I was thinking with all the conditions that there are in the world for me to just have to eat three meals a day to be the best way to control my diabetes it didn't seem, seem as bad as it could have been. I know I quite enjoy my food and enjoying eating and so it just, it made it seem not as bad as some of the other conditions that I could have had in hospital you know. But'

When your blood sugars were high what did you have to do to bring them down can you remember?

It was just really when they were, when they were particularly high I just, I think like I said it was just a prolonged period of high blood sugars that before I was diagnosed and the doctors don't want to put you onto a regime which is going to send you rocketing down low because it's, I mean the high blood sugars you can, you can kind of, you don't really notice as much as you do with your low blood sugars, you, it's a lot more dramatic when you've got low blood sugars you start like feeling shaky and pale and sweaty and things like that so the doctors don't really want to put you onto insulin that's going to make you feel like that. So I just remember just taking the insulin that I was told to take and just kept going, just going through those, all the regimes that they were telling me to. And like again it took, it took about three or four weeks for it to fully stabilise but again I knew that if I kept just taking the insulin that I was told to take and the right doses at the right times I knew that it would eventually stable itself out and that's exactly what happened really.
 

How do you feel?

Interviewee 1' Annoyed really. It's like, because it, I've done that quite a bit really My readings used to be quite high at dinner and I couldn't think of a reason why, I mean, they've levelled out now but I think it was the fact that I was, I'd eat a bit, I'd eat at lunch, or I would skip out lunch, so I wouldn't do a lunchtime injection because I'd get up late.

Interviewee 2' But then have snacks.

Interviewee 1' And then have snacks, like'because I got hungry and then'

Interviewee 2' biscuit or one slice of toast, and you're like, 'Oh, that's probably not worth injecting.'

Interviewee 1' And then, that doesn't need an injection.

Interviewee 2' But it's always worth injecting 

Interviewee 1' You always, always have to inject for everything you eat.

Interviewee 2' You need to know when you're high. Like certainly if you have a snack or something like that, or, maybe a bar of chocolate, even though you're not meant to, you should do a blood test and then injection, always.

Interviewee 1' So, I mean, if you're high, generally you'll feel quite highly strung so you get annoyed with people really easily. 

Interviewee 2' Yeah, definitely.

Interviewee 1' All the time. 

So, there are things that you have to adjust in order to keep your'?

Interviewee 1' Yeah. Yeah, like sometime you can do, you can get away with doing three injections a day. If you get up late and you have breakfast and then you don't have lunch or any snacks but sometimes you have to do 5 or 6 because if you, you get up and you have breakfast and then you have lunch and then you feel like having a snack or something, and then, then you do an injection for that and then you do an injection for dinner and a long term one, and then maybe have something after dinner as well and do another injection. You just have to look at everything you eat and think, 'What's in it?'
 

And sometimes I forget and I don't forget, well I've been told I don't forget as, as much as most people my age do. I forget like two or three times a month maybe. It's not a problem because if I know that I'm supposed to have taken it then I just won't eat as much and I'll go home and take my insulin as soon as I get home. So it's not really a problem. Sometimes they'll go sky high and I'll feel really bad but'

What do you mean really bad?

I feel really thirsty, you have an unquenchable thirst and you kind of have. It's like a headache but it's just you feel like your eyes are popping out your head all the time. It's not nice and, but people understand because we're at that age now where, where people understand that kind of thing. And if you say I'm not feeling very well because my blood sugars are high people know what blood sugars are. But back when I was a, a kid you'd say, you know, I'm going low and no one would, no one would know what you meant, you know. You feeling depressed or something, no my blood sugars are going low in fact, you know that kind of thing. So yeah.

If I have a really high result or I have a series of high results then I think I've got to change something here. Something's not right. And I'll just go, you know, and have a rethink of what I've eaten that day and what I've done that day or over the week. And just try and change it. You know, and if I'm putting on a bit of weight then I know I've got to cut down or eat different foods. You know, sometimes you just, you know just your diet changes and you don't realise it when you've got lots of coursework on the go. You start eating things you like instead of things you should and you know, the, you know you just realise it. You know, you just do your blood sugars one day and think. Well how come they're, they're really good a few weeks ago and what have I done differently and then you just go back to the, what or just change it so that they are better yeah. And it's best to keep a record of your results but I don't because I'm very, very lazy. I used to.

You don't?

I don't anymore so when the doctors ask, so you know like what was your last result. I have to try and work out how to do it on my glucose monitor thing but it's not the best way because it's not just there. It can give you an average of your blood sugars over the weeks and the months and everything which I find very useful. You never used to be able to do that with the other, with the strips unless you're very sad and used to work it all out by hand but. Yeah there are advantages to the modern way of doing it yeah. 
 

You also told me that one day you felt frustrated and you started sort of punching a piece of wood or something like that?

I came back from the beach and I was about 32, and everyone started having a go at me and they were all going crazy, and I just ran upstairs, and I don't know - it was a little bit of wood, and I just started smashing everything and just went absolutely crazy, and no self control. And I was high as - I don't know - I was about 32 and they had to call the cops, and the copper came round, and I finally calmed down at that bit and he said, 'Have you been on drugs?' and I said, 'No, do I look like I was on drugs', I just couldn't be doing with the coppers, because I can't stand cops - and I couldn't be doing with a copper like telling me what to do, but I didn't want to say nothing. I couldn't be bothered to be banged up for a night, or nothing, so next - I finally got my sugar levels down. I took some insulin and had something to eat and finally calmed me down. But the next morning I was just - oh what the hell happened last night? I was like, I was like on a different planet. People would have thought I'd been on heroin or something. But your blood sugar peaks, they don't say your blood sugars change your mood, but they do if you want them to, I would say.

And so I kind of started - started sorting off getting my sugars back to normal and everything and doing more work at school and getting into things and just slowly getting back together and working for a good sugar level test and everything. Because that was my main priority - to get a good HbA1C. And I kind of got it in the range. I got it better than it was. I got to 8.6 and then I carried on getting it better and better I got an 8.2 and then it - I kind of forgot about it. But I wasn't going really high. I was taking my insulin and everything and but it's really hard to control I had another bad one, which was the worse one I've ever had - it was 9.5, but that month I wasn't really being stupid, or nothing. I was taking the right insulin in the right doses.

And how does it make you feel when you were doing everything right and you get a result that you didn't expect?

I - nah - didn't want to - I thought no I'm not making it miserable, I'm not going to be miserable because that's what it wants you to do. I didn't want to give in, I just thought, no, carry on. It must have been - you just got to keep working on it and it's your age - you've got to get - it's just your age which is the problem, really - your hormones and all that and sorting you out and I thought well it's not really - you've got to do the best you can do. Just keep going, don't give up. If you give up there's just no point.

So, this is the attitude you have, that you understand it's a sort of phase you're going through?

Yeah.

As a hard phase anyway?

Yeah.

Because you are a teenager?

Yeah. That's what I think. Since I've been a teenager I've never had these problems when I was a kid. It was quite mellow when I was a kid, and it was all right really. It's just these past two years that have been pretty'

Rough?

Yeah. But I thought through it all you've just got to keep going on. 
 

Yeah four in the evening and I think it was ten in the morning, so eh yeah, God that was a long time ago [laughs]. and then I stayed on Human Mixtard for a long time, a very, very long time and it wasn't until sort of my teenage years where I don't know whether my body started becoming immune to it or it just wasn't suiting me any more because of the, the changes in me, but my blood sugars were constantly high, I just could not get them down no matter what I did.

When you say high'?

High they were, like high teens sort of eighteen, nineteen, twenty, they were constantly up there and there was a few occasions when my blood sugar was that high the machine just wouldn't read it, it was 'hhh' and that was scary because I was not a nice person to know when I'm high, I get very, very moody and very, very sort of, you know, snappy with everybody and like, leave me alone I don't want to talk to and, although you know you have to move around to try and get it down, you just don't want to. You feel like curling up and going to sleep so like I say I'm not a nice person to know when I'm high. But, at the end of my Human Mixtard stint I was on [sighs], a very high dosage, I think it was up to, about sixty in the morning and about fifty-odd in the evening, I was having a lot of insulin and it just still wasn't bringing it down. And because I was having more insulin I was eating more because I was hungrier and I was putting more and more weight on and it just wasn't healthy. So when I went to the clinic my specialist actually suggested I go onto four injections a day, and to think, and then I thought 'well I don't really want to do that if I possibly can, is there another option?' So my diabetes nurse came round and she discussed other types of insulin that I could take and then I tried another one which was Humalog I think? Yeah? I think I tried that one, but that didn't do anything so I thought, 'Alright then, fine we'll try the four injections and see how that goes,' and so far it's been okay.

And which type of insulin is it now?

I'm on NovoRapid and Lantus, and I take three injections of NovoRapaid and one injection of Lantus which is 40 units with my breakfast of the Lantus, which is the long acting it sort of slowly releases into your body and goes through the day and keeps you through right till breakfast time the next day. And then I'm on small doses of the NovoRapid which I have with my breakfast, my lunch and then my dinner and then if, because it's so flexible, because it's such an easy insulin to take, if I'm gonna have just a very small snack of an evening before I go to sleep I won't have to have any more. But if, say for example I'm out with my friends of an evening and I know we're gonna go to the chippy or something after we've been out I will have a few more extra units so it's, sort of four, five injections a day sometimes, whatever, you know, I'm gonna eat. So and, it seems to be working, I've managed to get my overall reading down to seven point eight percent which is very good because for a long time it was up to ten and eleven and that's when the damage started being done [sighs] so fingers crossed I've managed to get it down and it's gonna stay there now.
 

And for the first maybe year I did find it really difficult to keep under control. It was very very changeable. It was swinging from very low to very high quite a few times a day sometimes. And obviously since then it's just been you get to know your body better and you know how doing exercise, eating food and doing insulin all, all works together. Then gradually since being diagnosed I've got better at that.

And why do you think you found it difficult to start with? Was sort of this', the managing of diet, insulin, lifestyle?

It was just. I think it comes down to experience more than anything else. Knowing the sorts of amounts of insulin that you want to do. I think to start with I was quite scared of doing too much insulin so I was doing quite regular small doses but that obviously still left me with quite high blood sugars. So I still didn't feel great at the time.

Why were you scared to give yourself more insulin?

Because I always think, at that time I was much more scared of having hypoglycaemia than I was of having the high blood sugars. And also if I was out when my parents weren't around or when people weren't necessarily so aware of the diabetes I'd much rather be a bit high than being low and then risk, you know, risk the consequence of having a very low blood sugar.
 

I think it helps you to work out which areas you're falling down on. Some things you may not heard about that you could try. I mean, I wasn't ever using ketosticks before but going to the diabetic group for teenagers with diabetes, the nurse and people there were discussing about it and I kind of realised that it was something I should be doing and hadn't realised how important or significant it was before because there's so many different things to be aware of. 

Well basically if you …if your blood sugar is running high and I'm not sure of the exact levels maybe over fourteen or fifteen, but your meter will if you've got one of the electronic meters generally it will tell you when you need to be checking for ketones. I think my one sort of says, 'Ketone question mark', so you know to use the ketone strip and have a check. And you get the ketone sticks on prescription from the pharmacy and use them just to do urine test. And then if you find that you are at risk of ketones from the high blood sugar, I think you are advised to drink lots of water and try and get your level down as quickly as possible because it can then have other risks and further complications if you're not treating it and not aware of the problem. But yeah ..

How many youngsters do think are aware of this that they should be doing that?

I don't think…well just speaking from the point of view of my health diabetes healthcare team I don't think it's necessary a number one priority for the healthcare teams to be discussing that when you're in your six month yearly or yearly review because the obviously the main concern is what dosage you're giving, what you're eating and what you general levels are. All the extra bits like that around the side may get a bit overlooked from time to time. So well I mean I didn't really know about them until I heard about them from the other young people. I think probably if you've been diagnosed fairly recently, it will be emphasised and stressed on diagnosis.

I think the first one went in at 45 when they took it at the hospital. So my machine only it goes up to 35 and then it goes HI. They did it at the hospital and they said it was going up to 45. I had so many ketones my blood had turned to acid. And that was like I don't remember much about going into hospital I was totally out of it and that. They put me on drips and all sort because I was so dehydrated with it as well. They actually turned around to me and said they hadn't seen my blood in a dead person let alone someone that was alive, for how much sugar I had in my body. 

And how are your sugar levels at the moment?

At the moment they're OK. I had a high the other day but it's like the highest I've had is 15 and that, but they seem to be steadying at the moment. I'm finding it difficult, a little bit difficult because I've been so ill I haven't been able to eat at all. It's like I went for a couple of days, so I've been drinking Lucozade to get the energy into me. It's obviously full of sugar so I'm having to have more and more insulin to cope with that and push it back up. So, but they are steadying at the moment quite well. So, is just keeping an eye on them really. It's like I'm taking them more regularly now. I take them twice a day. And that, but, yeah, they seem to be doing fine. We just worry all the time because I know they can, can go up, within half hour and that, so it is a worry. As soon as I start feeling ill my blood sugars start to rise it, 'Oh my God, am I going to end up back in hospital again?' So it is a worry as soon as I start feeling ill or I feel a little bit high. So I'm taking my blood, I'm testing my ketone and having a bit of extra insulin if I need it. So yeah.

And what do you do if you find traces, do you have to call your nurse?

No, it's like once I've done that, I've checked my blood, it's a little bit on the high side, I just take a little bit of extra insulin. And what I do is I drink a lot of water because they told me that it flushes it out of your system. So I just drink plain water and I just keep drinking and drinking and drinking and most of the time I can flush it out of my system. And that, so it's just drinking plenty of water with, I don't have any juice in it nothing because, it's usually plain tap water.

So that would be their advice?

Yeah. Yeah. And it's like what I would do, so obviously if they start going up and they're not coming down and that, or they're like that for a couple of hours, it's like I literally, I drink about 4 or 5 pints within half hour, literally. I get down to as much as I can and, but, yeah, that's what I would do but obviously keeping an eye on it. I check it about every 10, 20 minutes when it gets like that and, so, but within like an hour, if it's still there I would then consult my nurse or just go straight up A&E. That's what I've been told to do now in my situation. For other people, yeah, just get onto your nurse or your doctor. And that, but water, it does seem to flush it out of the system and I have been able to control it like that.

Tell me, you have been experiencing numbness?

Yeah. Yeah. In a couple of my fingers since I've come out of hospital I've started getting numbness. I can't feel part of my finger at all. It's just nothing, I've had it two fingers, one of them's now, still having a little bit of numbness but I can feel most of my finger but the other one half my finger can't feel it at all. I touch something with it and I just can't feel it at all. And we don't know what's causing this at the moment. My GP's just keeping an eye on it and that's, because

And what happened, I like, yes, I was taking my insulin more regularly, but I was having really severe hypo symptoms, even when my blood sugar was like really high, because my body had got so used to my blood sugars being like in the high 20s and above. And so as soon as I took, like started taking a more normal amount of insulin, I'd get like the shakiness, dizziness, disorientation and everything like when my blood sugars were like 18. And so that was really discouraging because when'.

That usually happens when'?

Yes. And like although I like knew that my blood sugar wasn't actually low, the only way I could stop those feelings was by eating something. And that was kind of eating outside of what I'd planned. And so that felt out of control, which like made me feel really bad and like didn't help with kind of sticking to a routine and things like that. And so then I kind of didn't want to take my insulin. So I spoke to Dr [name] and she got in touch with the diabetes team. And at first they were like, 'Oh, we don't really know. That's really unusual'. Then she spoke to somebody who had treated a girl with like similar problems to me. And what they had done was gradually, gradually increase the amount of insulin they were having. So that, like at first they'd aim to have like the blood sugars like in the 20s for a couple of weeks, and then down to kind of between 18 and 20, and then between like 16 and 18, and keep, and doing that gradually so that the hypo symptoms wouldn't keep happening. And so that's kind of what I'm working on at the moment. So I'm like taking my insulin regularly most days. There are some times when I still like skip the entire injection, but most of the time I'm like taking some insulin and like, yes, working on gradually bringing my blood sugars down.

How are your blood sugars at the, at the moment? What level are they?

Like between 16 and 18 most of the time.
 

Obviously two years on, when I'd brought my sugars under control and they were running normally for the first time in, well, five years, something like that. Drastic, apparently drastic changes to your body and the way you operate your body do have an effect. And I ended up going blind. I ended up losing my sight. 

And what happened with that was, it was a few years after I'd brought everything under control. I was on holiday with my friend in Greece, visiting another friend for her birthday. And when you go abroad, your sugars are a bit up and down, all over the place, because of the heat and the different food and things like that. And I noticed that my vision was getting slightly, it was slightly blurred. And I thought, 'Well, okay, this is fine. It's just because my sugars are a bit haywire it's a bit blurred'. I wore glasses anyway, for driving and reading. And then after about a week I really started to worry. Because in actual fact I'd only been to the optician about two weeks before I came back, before I went on holiday. And she'd checked the backs of my eyes and everything. I didn't need a new prescription. So after a week I was slightly concerned. I remember coming down from my room one day to find my friend by the pool. And I couldn't actually pick her out. I couldn't pick her out because it was all so fuzzy. And I think that day I was really really frightened. But I put it to the back of my mind till the holiday had finished. I just tried to be very rigid with my sugars. Which was quite difficult, but, you know, you have to do. 

So I got home and I went straight back to the optician. And when she looked in the back of my eye she started to see little tiny blood vessels growing in the backs of my eye. And she said, 'Don't worry because it happens with every diabetic. Every diabetic who's had diabetes this number of years will get these blood vessels. It will just have to be lasered and then it will be fine'. So I went to the diabetic clinic for them to have a check. And they said, 'Oh, it's fine. It's nothing to worry about. You'll be fine'. But two months on I went back for another diabetic check and basically my eyes had just exploded with blood vessels. And the doctor was quite concerned at how quickly that had happened. So I had the various pictures taken of the backs of my eyes. And they started lasering blood vessels in the back, in the back of my eyes, trying to seal them, because they leaked out blood, which is what causes you to go blind. But as quick as they were lasering them, the blood vessels were just growing and growing and growing. Eventually I lost the vision in my left eye. That was after a couple of months. And they'd said my right eye was going to be fine. 'Don't worry. We'll be able to save your right eye'. They started lasering that. And within a week I had a haemorrhage, which caused me to lose all vision in it.

So I was sort of registered, registered blind, which was at the age of 23.
 

Have you ever, apart from before diagnosis, but have you ever been sort of high or felt high?

Oh, yes. There has been lots of times when, well, yes, there has been times when I've had extreme high blood sugars, maybe because I hadn't had enough insulin or something. And that made me feel a bit sort of unwell, a bit maybe sick and I was thirsty. Just the normal symptoms of when I was first diagnosed. But I quickly recognise those symptoms. I think it's good to know the symptoms of a hyper as well as a hypo. I think a lot of dieticians and consultants stress on the symptoms of the hypo. But it's just as equally as important to understand about a hyper, so that you can control a high blood sugar just as you would control a low blood sugar. Because a lot, I think a lot of people don't understand the symptoms. They don't recognise the symptoms of when they've got a high blood sugar on or a high blood sugar. But I think it's a lot more common for people to understand about low blood sugars. But it's equally as important to understand highs. And I think that should be something that needs to be worked on within the people who are explaining, the consultants and the medical people who explain about high and, high and low blood sugars.

Why do you think they do that?

I really, I think, I suppose, personally I think probably they view a hypo as being more serious than a hyper. Which to me is silly, because I think they both, they both have effects on the body I think that are equally as harming and as damaging. So I'm not sure. I think it's because when you're, when you're a child it's quite a lot of information to take in about blood sugars and high blood sugars and low blood sugars. And to have to recognise symptoms of this, that and the other is quite difficult. So I think they probably go for the hypos because they might see that as being the more, the more dangerous out of the two. Because obviously if you're hypo and you, you're nowhere with sugar and you faint and go into a coma, that is dangerous. But then there's also the risk of hypers, when you could go into hospital with, having severe high blood sugars. So I think that, yes, and I'm not sure why they do that, but it's certainly something that they should address. Because it's no good just recognising one extreme when you need to also know about the other as well.