But how do you know that you’re having a hypo? How do you feel?

[Sighs], well, diabetics have different symptoms, they, somebody will probably not have the same as what I had. I feel, I feel very weak, I feel as though, you know, okay, right. and then I will feel shaky, and it sounds weird but I do actually have pains that go down the fronts of my legs, I have a really weird feeling or sensation that goes down the front of my legs that will tell me that okay I’m having a hypo. Sometimes I’ll feel very, very hungry, sometimes I’ll go into a cold sweat, or if I don’t notice it myself, my family’s, my family will notice I get very, very giggly, I will laugh at absolutely anything, and they’ll think ‘okay well shes either having one of her, her funny moments’ as my mum calls them, or I’m going low. So, you know, it’s always best to test my blood sugar, and sometimes when I am actually only having a funny moment then I get quite annoyed [laughs], I’m thinking ‘right it’s okay, as soon as I find something funny, you know, they want me to do my blood sugar’ so I do get very, very annoyed.

But yeah it’s if your family and friends know your symptoms then they will, you know, they will, they’ll help. And one of, one example I’m sat there in the kitchen with my mum and my boyfriend and all of a sudden, deathly white, and you know, I’m, I am just sitting there, not really making sense and mumbling about absolutely nothing, next thing I know my mum’s got a bottle of Lucozade in my hand. And, you know, well [name] was like, ‘Well, what does she need that for? You know, she hasn’t said shes going low. My mum was like, ‘Look at her. You know, ‘She is going low. And my mum knows, exactly, you know, and we tested my blood sugar, two point two so, you know, so, yeah. I think if the people around you can be made aware of your symptoms then, you know, they will know before you do [laughs] to, that you need to take something.

Thinking about your hypoglycaemia episodes because you said that you had 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.

Have you had any hypos?

Yeah. I’ve had a few times when I’ve quite often I’ve been tired. I’ve had a few late nights and stuff, and over the course of two or three weeks, and then I’ve done an activity, and it’s really drained me, and I’ve come in and sat down and started to sweat. Just constantly sweat, and – where it’s really sort of frightened my mum, because I’ve not done anything, and I’ve come in and I’ve started sweating, really bad. And then my head started to sway side to side, and my vision was going a bit funny. And so that’s happened about twice, and my mum’s just given me a bit of fruit juice and like a chocolate biscuit, and then I’ve had a sort of sandwich about ten minutes later, and after half an hour you’re just back to normal again. It’s almost like your batteries are going flat, in a sense. So as soon as you put new ones in you’re fine to go. It’s quite a strange feeling because you don’t feel any pain or anything. You just feel you want to go to sleep, but actually it can cause some trouble, it can be, so two times I’ve needed my mum, shes been there. But other times I’ve felt low, not bad, and I know if I don’t do anything about it will get bad. I’ve just gone to the cupboard and got a snack or a drink and I’ve been fine again.

Have you had any problem with hypos?

No. I’ve only ever had one severe hypo really. And that was in the house and yeah that’s the only time as far as I can remember that that’s ever happened so yeah it hasn’t been a great issue with me. I’m not quite sure why because I’ve never had a problem with high blood sugars either so yeah I’m. I can’t remember fully why that one happened. I think it was in the morning but I, yeah I can’t remember why. I think perhaps I’d done a lot of exercise the previous day in the evening. And at that time I wasn’t aware that when you exercise the exercise lasts and brings down your blood sugars for a long period of time rather than just that period of time and an hour afterwards. It actually lasts a long time so in the morning I found that I was a lot lower than I thought I could be after exercise.

So that was the only occasion?

Yeah as far as I know yeah.

And have you sort of been high sometimes?

I have had a, more of a problem with being high than low but still it’s never been a huge problem. Occasionally I get the dose wrong. Usually actually when I go out and eat out, outside of the home. If I go to a pub to eat lunch there then you’re getting different proportions of food and you usually have a dessert and it’s a lot harder to judge but when I’m eating at home it’s a lot easier for me. But yeah the high occasions are usually when I’ve done something out of my normal routine. So as I say, going out and eating outside.

What do you do?

Well, I’ve been reading mostly quite a lot of diabetics over eat, and if you over eat it just – when I over eat it just makes me feel even more rougher, because you feel bloated and you’re all feeling really shaky, and hot and flustered, and just shaking like a dog and you just want to get over it quickly so you just over eat but that kind of makes it worse because you feel bloated, and it’s still in you, and it takes longer. And I discovered last night when I had a hypo, about two o’clock in the morning I didn’t have a lot to – I was about 2.1 and couldn’t see anything, so I had a little can of coke, and I had an apple and toast, and one biscuit, and I was all right after that for the first time in ages, that was a bad hypo, but it was the first time it didn’t get me really bad, and I was quite proud of that. I woke up this morning and I was 21 but, I took some insulin, got that down, and went for a surf, came back and I was about 10, and sorted that out, and – and it – it’s just all depending how much you’ve got to take and what you want. If you want to over eat, over eat, but if you want to – it’s really hard to say because it’s – if you – if you don’t eat enough you’ll just go low, but if you get it right you’ll be back in that stage you want to be in – is it 4 is the floor and 8 is the date or something I was told and you’ll be alright then but if you over eat it just makes you high and you’ve got to take more insulin and get it back down – it’s just oh And it’s like – it’s finding the rhythm, really.

With regards to hypo, I don’t have many hypos really at all.

And for me to have a really severe hypo my blood sugars would need to be about 2, to a level of 2. I don’t, 3, I don’t really feel very hypo. That’s because the doctors think, because with having well-controlled diabetes it’s, takes me lower, my blood sugars have to be lower for me to really recognise a serious hypo. But I’ve never really collapsed or fainted or have to gone into hospital with a hypo, or a hyper even. And my blood sugars are usually, they range between sort of 3.5 and 10. Occasionally I get the high ones, but I always know why. It’s not like, they’re not just random. It’s always, if say I’ve had a dessert of ice cream and my blood sugar might be 12, I know why. It’s because of the dessert. It’s not just like my body has randomly done that. So I understand why it goes high. I think that’s an important part of diabetes, being able to understand why you have high blood sugars, or why sometimes if you inject too much insulin to understand that that’s the reason why you’ve got low blood sugar, and not just think it’s because your body is doing something strange, when really it’s what you’re eating or what you’re injecting that’s having that effect on your blood sugars.

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 were 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.

In your experience what are the most difficult things about having to control your diabetes?

I think getting rid of the hypo that I would have, because on one or two occasions my mum had to call an ambulance because I would lose consciousness but I wouldn’t know about it. She was quite worried because they say it can affect your brain and other parts of your body and she didn’t want that, and it was quite a struggle getting rid of that.

And I also sort of do quite a bit of exercise too, so she was worried about letting me go to the gym.

And can you tell me about those occasions you had these hypos and you lost consciousness?

It usually happened during the night, so when I was younger my mum would wake up at say two and six o’clock in the morning to check on me. And on, when she didn’t I would just go to bed and wake up in hospital, or with ambulance people around me, I wouldn’t really know what was happening but I guessed that I’d had a hypo.

It was for quite a few years that’s why I got transferred from my local diabetics clinic to the London one. But my HbA1C would be high because my mum would give me glucose to bring my sugar levels up, but then afterwards they’ll go really high as well, so it wasn’t working for quite some time.

Do you remember how long ago you had your last hypo?

I think it was last week.

And how was that, I mean at night also?

Yeah before I’ve, only in the morning, it was a, around three so I just took some glucose and then I’d had something to eat afterwards, which is what they tell you to do, like not just to have glucose on it’s own ’cause that’s bad.

Where you studying until late or?

I think I was just a bit more, I had PE during the day so that might have, did something, but I wasn’t really sure why.

How does it make you feel to have these hypos?

If I go really low then, that you feel hot and sweaty and it is, it’s not something that you’d want to be every day, and so like when you start walking and you can’t walk properly, and you feel like it, it doesn’t feel right and so my mum can sort of tell as well, or when someones talking to you, it’s like you can hear them but, it’s kinda distant.

I’m sort of in a daze when it happens it’s like, I’m not following everything that’s happening around me so, I won’t notice when a definite change when I’m in a hypo and I’m not in a hypo which is, so gradually I’ll come back to normal? I won’t really notice anything.

Sometimes it’ll be more the concern that of my mum would have, like if I was to go out later on during the day shed be a lot more wary and wouldn’t be as happy as letting me go. So, sometimes it will feel like it’s holding you back but, it’s just that, I’ve always thought of it as another part of being diabetic. Which is something else that you have to deal with.

What do you mean, vicious, nasty? Can you describe them to me?

Oh, like really – I don’t want to scare anyone but they just, they, you don’t know – you can’t really see a lot, especially in the night, if you are prone to hypos in the night so you can’t see a lot and you just don’t know – you know where you are – you are switch on but you just can’t see a lot, and you’re really, you’re really, really, really, really, really, really hungry. It’s like you haven’t ate for about I would say a year or something, and you just eat everything and I ate – I did it one night, and I had about four apples, two pears, two peaches, five biscuits, a bottle of lucozade, a hypo thing and a chocolate biscuit, and I went – I went up and then suddenly I felt sick, I was all bloated. I thought, ‘No wonder, I ate too much,’ and the next morning – I had a rocky night I couldn’t – I was feeling sick and everything so I went to sleep. I woke up the next morning. I was about 22, I had ketones and everything. I was feeling rough, so eventually I took 22 units of insulin, to get it back down, a banana, went for a walk, then came back. The ketones had gone and then I went out for a day to St Ives, and came back and we got that sorted. But they’re just – they’re really vicious and nasty. They grab you like anything but you’ve just got to deal with them and prove everybody wrong that you’re hard and you earn peoples respect, and just don’t give up on it, because it must be there to give you some help or something.

How does it make you feel when you have been working so hard to try and keep you sugar levels to a good level, I mean when you go high, or low?

Well it’s really hard to get it normal, to be quite honest with you. It is pretty solid, but you’ve just got to keep trying, even if you are at deaths door, or want to die, because when you are a teenager or ever since I have been a teenager it’s been horrible, and…

Explain to me and to other teenagers?

Well, it’s, you just – hormones and, you just feel, because you’re growing and your body parts are different, churning your stomach up with hypos, making you shaky, and – and the high sugars, and whatever you’re prone to. If you’re prone to being high – sugar, or how much insulin you’re taking, like if you do sport and the next day you do nothing and you do sport and you don’t know what insulin to take – really hard to regulate, but you’ve just got to keep going on and on and on.

Are your hypos different now to how they were before, say two years ago?

Two years ago I didn’t really get – this year and last year was probably – you get – because hypos just get you at a point where you don’t want – when you – when you’re miserable, or like just depressed, or you’ve had a hard day, they’ll get you then. They’ll get you when you’re on the weakest side. They’re like little things that bite into you. They’ll get you on your weak side, so you’ve got to really deal with them’ that makes it weaker, when you’re like on you – if you have been doing like exercising, had a bad day or something, they will get you then. They will get you then because I don’t know what it’s but they just make you more prone to having hypos when you’re stressed or depressed or anything like that.

And you just – they – therell be different symptoms – they’ll be bad, medium, really bad, vicious, make you – because I’ve had hypos in the night where I’ve been really badly shaking. Just can’t stop shaking and I don’t know if that’s a fit or something, but – because once you’re over the hypo -it’s still in there and it’s got to get through there, it’s got to g

So what are the signs for you?

For me?

Yes

Light-headedness definitely. That is the main thing that I tend to feel. Also start slurring words a little bit sometimes if it gets low. And I tend to go really, really pale as well although obviously I don’t notice that as much as everyone else. Although like I said earlier on it is different for everyone so most of this might not, well almost certainly won’t feel the same way. But it’s strange as well because therell be some times my blood sugar level is about 3.5, 3.6 maybe and I’ll feel it. Other times it can go down to about 2.0 and I won’t feel a thing until it goes down to about that. So it can be quite alarming at times [laugh] if you do feel a little bit hypo and do a blood test and it says 2.1 or something. But yeah. But it’s usually, I’m usually I’m okay for getting them stop though. I’ve, I have had a couple of ones where its not gone back up at all [sigh]. And in fact more or less the first one I had, well one of the first ones I had. The actual first one I had was in school one afternoon, god that was frightening [laugh].

What happened then?

I just suddenly felt really light-headed going into chemistry one afternoon. Almost fell over the table going in and then really quite frightened my teacher. Although he did, he did have an idea of what to do and you had a fair idea of what was going on but yeah it’s quite worrying when you’ve no idea what’s happening like the very first time I had no idea what the symptoms would be like. But one of the first or what would be maybe the second or third maybe that I had. I was in here I just could not get it to stop I drank like a bottle and a half of lucozade then was chocolate biscuits, shortbread. You name it trying them and yeah it was fairly high the next morning the blood sugars as you would expect after having all that stuff but it just [sigh]. And the most frustrating I had that every other time I have it, I’ve had a hypo I’ll try maybe half a bottle of lucozade or something else and I’ll be fine in a couple of minutes. Whereas this one was about 20 minutes before I got it sorted out. It was quite worrying. I mean but that happens from time to time.

Did you tell your doctor or

Yeah I well, I did well show the next one, theres next week at the clinic. I did say that and they said that that can happen. I mean 9 times out of 10 in fact probably 9 and a half times out of 10 it will be, it’ll sort itself out fairly quickly. But that other half of time it could go on, could go on for a while and yeah it’s got the potential to but it’s. I’ve not found it to be that common.

I control it. Generally as I say I’ve always eaten a healthy diet. I do have high blood sugar especially if I’ve had a time where I’ve had a fit because I’m scared of dropping low again because when I was 14 I had a very severe fit. Mum found me in bed sat rocking. I look like I have rabies when I have a fit [laugh]. I feel my teeth grate. I foam at the mouth. I’m just staring at nothing. Mum found me sat in a bed, sat up rocking and I’d been sick which had never happened before. She gave me two glucagon injections which didn’t bring me around. The emergency doctor came out and gave me 60ml glucose intravenously which still didn’t bring me round. Bless him. I knew the doctor was a friend, is the father of one of my friends and he was. Mum said he was shaking like a leaf because he was just so scared because he knew me. And after that 60 ml he was, ‘Ambulance,’ and I was out cold for 36 hours even though my blood sugars had gone right up and come right back down I still hadn’t woken up.

And then after that I lost my memory which still hasn’t returned. And each time I have a fit my memory gets worse but that’s just because it was. They still don’t know what caused that fit. It wasn’t anything normal. They think it might have been an infection or a virus that brought it on. But after that we really did sort of stamp down on ourselves and say, ‘Right were here to control it. Let’s get, do it properly. Do as all the books and the doctors say. Do it like we should. And we did for a while and then we just found it was just getting too much so we went back to ourselves and I was absolutely fine. Carried on with all my sport because I stopped for a while because I thought that might have been causing it.

And what else did you change during that time?

Nothing really. For two years I was quite nervous so the doctors said when I turned 16 and I’d started college, my first day of college that they’d try me on four injections. They thought that that might be good because I did so much. They decided that well four injections will probably work for you. I tried it and found that it just got in the way of my lifestyle.

The last, well, three months of last year I had seven fits in total which was horrible because it takes me a good day to recover from this. They are just horrible. And he said we could really do. And from that, because of that I’ve been keeping my sugars high because I’ve been scared to drop low again which obviously has been doing me no good at all.