Sylvia - Interview 38

Age at interview: 41
Age at diagnosis: 40
Brief Outline: Diagnosed a year ago. Sylvia takes metformin, simvastatin and amlopidine.
Background: Sylvia is an administrator who lives with her partner and has one son aged 11. Ethnic background/Nationality: Black British.

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Sylvia was diagnosed with diabetes a year ago when she went into hospital for an operation. For some time she had noticed she was drinking all the time but she was convinced there was nothing wrong with her. After her diagnosis she was advised to increase her exercise and make radical changes to her diet - avoiding all sugary drinks and spicy foods. At first Sylvia coped really well and felt pleased that she to lost a lot of weight and felt much better in herself. But as time has gone on she is finding it very difficult to stick to her new diet which she finds boring and bland. Recently her metformin has been increased which has not agreed with her, and she was also prescribed rosiglitazone which she decided not to take at all.

At the moment Sylvia knows she does not have her diabetes under good control. She finds it really hard to socialise as some of her friends don't really understand how diabetes works or how difficult it is for her not to eat the same food as them. She particularly misses sweet drinks made from fresh fruits and condensed milk and says that even though she makes sure she has a bottle of fresh water on her desk at work, she simply doesn't want to drink it.

Her partner and son dislike the food she has to eat which means she ends up most days cooking two dinners - one for them which is spicy and tasty - and the other for her which she finds boring.

She knows she should kick-start a new exercise and dietary regime, but at the moment is avoiding going to see her diabetes nurse. She recently received a letter from her GP reminding her that she needs a checkup but she is worried about going because she thinks her blood glucose will be too high. Sylvia wonders if she could get more expert help to cope with her diet.

Sylvia used information from the internet to supplement the information she had received from her nurse.

Sylvia used information from the internet to supplement the information she had received from her nurse.

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The doctor sort of gave me some information but I just didn't understand it, because, you know, I went out and bought myself a machine to prick my finger, and he's telling me that those machines don't really give true, accurate readings, you know, like what the you know, when you give a blood sample at the doc, at the hospital, that would be. But obviously you can't go to hospital all the time to have blood tests and you know, he explained it. But I think if they gave you more paperwork, you know, literature that explained it, that might help, rather than them telling you and then you come back there and you think, 'God, what did he say again?' Because you just forget.

So you didn't have any leaflets to take away and read?

No, what I did, what I did myself, I went on the internet, and I started to looking up organisations you know, finding out about diabetes. I did sign up to one, I can't remember, I think it's Diabetes UK, I signed up with. Yeah, I think it's them, because I think they, that that's the one where you can monitor yourself on their website, you know, your levels and things like that because they gave me, they sent me a lead that I can just plug into the... Which I've never used [laughs].

But that's what I did, I just, and I sort of like made my own little folder. I printed all this information off the website, and I made a little folder that I could sit down and go through it and read to find out what I should be doing, what I shouldn't be doing. And I found that's what been more useful than, you know, the doctors really.

But, you know, the nurse sort of gave me a little bit, what I could eat, what I couldn't, and exercise and she sort of, vaguely sort of told me what could happen, you know, with your feet and things like that. But I've found, you know, more useful from the internet.
 

Sylvia tries to follow the advice from her diabetes nurse but misses all the tasty things she used to eat and drink.

Sylvia tries to follow the advice from her diabetes nurse but misses all the tasty things she used to eat and drink.

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No Guinness punch, pineapple punch, yeah, I know. Pineapple punch, carrot juice and carrot juice that we make, that has condensed milk in it as well. Oh, I mean, they're lovely drinks but obviously the amount of sugar in them. It's just a no-no.

And what about the food itself that you've grown up on. What did you eat as a child?

I mean because my nurse has said to me if, if I'm going to have to have rice let it be basmati and not the easy-cook rice which is what I do cook a lot of the easy-cook rice but what I tend to do now, if I cook that, I won't have none for myself. Because you know she says that's high in sugar, where the basmati has got sugar but it wouldn't be so high. I've got to get used to like the brown rice and I've bought the brown rice and it's still sitting in my cupboard [laughs]. It's never been opened. I bought brown pasta and I found that so dry and boring, you know.

I like a lot of coleslaw, I make my own coleslaw, but I put sugar in it [laughs]. You know, everyone loves it with sugar in, it just gives it that little, you know, so that I find hard. I mean I did go out and I bought some Canderel because it's says suitable for diabetics and I made coleslaw on Sunday and I shoved that in it [laughs]. So'

Any good?

Tasted all right but [laughs] not quite the same.

And what about kind of food you have for dinner?

Well I tend to make like lamb and pork, I don't really tend to eat [those] myself now because obviously they're quite fatty. My nurse has told me to avoid these and to eat things like chicken and turkey without the skin. So that is what I've tend to cook for myself and you know, I'll cook them lamb or pork, you know, or stuff like that. And they don't want what I'm cooking for myself because I have to have so much, I have a lot of vegetables as well. I love cheese, and my nurse has said to me not to do, and I love prawns and you know, they're, she's told me not to have prawns either, so I just find it hard. I found in the beginning I was really sticking to it well. I'd eat salmon, mackerel, chicken and turkey - because I hated turkey before - but she said to me try and eat turkey, that would be good for you. So I had turkey and no they weren't interested in all these vegetables and things like that, they wanted their food.

And I found in as well, if I was cooking rice I wasn't putting a lot of salt in, you know, oh no, they want salt in their rice, you know, so I just end up cooking something for them and something separate for me.
 

Soon after being diagnosed Sylvia lost her eyesight for two weeks until her medication kicked in.

Soon after being diagnosed Sylvia lost her eyesight for two weeks until her medication kicked in.

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And then when I went to the, went back to the doctor for my results and he said to me, 'You know, you're diabetic.' And he said, 'Also you've got high cholesterol and you've got high blood pressure'. And [laughs] he said, and I just sat in a chair and thought, 'Oh no'. And he said to me,[name], you are taking it very well.' And inside I'm saying to myself, 'No, I'm not'. You know. It's probably just, I probably looked like I was taking it well but it was a shock, it was a shock, I just didn't know what to say. You know, all three at one hit.

And then about a week later my eyesight went, and I couldn't see, I couldn't read anything. I mean, I still, I went to work and I'd say to the girls, 'Come here, what's it say? What does this say?' And they said 'What's wrong.' I said, 'I can't see.' You know, because it just went, just like that. Even walking down the street was a blur. Everything was a blur. So my boss said, 'No I don't think you should be at work. You should, you know, go back to your doctor.' And they sent me to [the eye hospital] in London and they thought that the onset of everything just affected my eyesight. Yes, so before my boyfriend used to go work each morning, he used to say, he used to go to the shop and he'd bring me back the newspaper. 'Here, [name], here's the newspaper.' 'Why have you brought me a newspaper, I can't read.' You know, I couldn't read it. All I could see was the headlines, that was all I could see. 

How long did that last for?

It lasted two and a half weeks.

Was that until the medication kicked in?

Yeah. Until that kicked in and then, yeah, that sort of helped. I had old glasses but didn't help at all. My sister went out, she bought me a little, you can buy a little magnifying glass that you can keep in your purse, she bought me one of those. So I had one of them. It was terrible. That is when it hits you as well, you think, you've got, you know, you're going to have to try and manage as best as you can.

That must have been quite frightening?

Yeah, because you know, my son and my partner, they became my eyes. You know, when we went shopping I'd say, you know, 'Read this, what does this, you know, what is this?' You know, they got fed up but, everything, I had to get them to read it. You know. Yeah. 

Because then obviously I had to start being careful with my food. So, every, every time I go shopping now I read everything, see what the saturated fat is, you know, the sugar content. You know, it's all, that's all taken, that's how it's all taken over my life really. And I find it ever so hard.

Sylvia gets fed up sometimes that she can't have the same food and drink as her friends.

Sylvia gets fed up sometimes that she can't have the same food and drink as her friends.

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I mean, me and my friends, we all love going out for meals and you know, the places they want to go like Chinese, they're all full of sugar. You know, I went to a wedding in August and the next day I was meant to go out with my friends. So Saturday, went to the wedding had a really nice time. The next morning, I couldn't get out of bed. I felt, my legs just' Nothing would allow, I just couldn't get out of bed. I couldn't do anything, and my friends ring me up, rang me up and said, 'Be ready, [name].' You know, I said, 'No I can't. I really feel awful.' And they said, 'We'll give you half an hour extra.' I said, 'Okay, half an hour extra.'

Half an hour later, I still felt awful. I was really, I had no energy, I felt really bad, my head was just you know, felt awful. And I, they rang up, said, 'You ready, [name]?' I said, 'No, there's no way I can make it. I really do feel ill.' They said, 'Oh you've let us down.' I said, 'No, if I go out with you I think I'll end up in hospital.' And, because, we were going out to eat that day [laughs].

Anyway, the next day I did my sugar levels and it was 9.1. So, the, that Sunday it must have been really high, and that is what, because even my eyesight, my eyesight went funny as well. So I just think the food at the wedding, you know, it was the sit down meal. Even though I didn't even eat the cheesecake with my sit down meal and, maybe the drinks because when we got into the reception, not the reception, you know, after the church, they had champagne waiting for everybody and I did have a glass, orange juice and. And I think that all of that sent my sugar levels that high, I couldn't, because normally, I always cook them Sunday dinner, we have a full Sunday dinner, roast potatoes, I couldn't even get out of bed to cook dinner. I felt that bad.

I mean lately I have been because obviously, you know, I like going out and I like, you know, eating certain food and, when you find you can't, you know, you do, you feel very low. I mean I was feeling, you know. My friends all said, 'Well, what's wrong with you? You know, why are you? I said, 'I'm feeling really depressed, yeah.' Said, 'Oh, don't be silly. No you're not.' I said, 'Yes, I am.'

You know, because they don't understand, because all they ever say to me, 'Oh you, we couldn't, if we were diabetic we wouldn't be able to cope.' You know. And I think, 'Well I am, and I have to and I don't need you all saying, 'oh no, we'd still eat what we want to eat.' You know and this is what I get from some of them. You know, not from all of them, you know, and that is quite hard. So, you know, it does make me feel really low but...

And what'?

I don't want to go down the route where I go to the doctors and, you know, to say, 'Oh, I'm feeling depressed.' So I just feel then, you know, you get labelled with depression and I don't want to be labelled with that.

So has it affected your social life?

It has because you know, obviously sometimes there's a point where I say that I can't go, or if I do go, I've got to have more vegetables and, you know, they're all chewing everything off, and I think, 'God, I can't you know.' Alcohol, which I never drank a lot of anyway, you know, my nurse said to me, 'Try not to drink.' You know, so I, even say like a little glass, you know, a Breezer or something, I said, 'Oh no, I can't have one.' You know, I really, went but you know, now. Oh gosh. 

It's hard, you know, because they all love going out to eat and you know, that's what we do sort of thing, you know, or go out to eat and then maybe somewhere else after. Or go shopping, or after shopping we’d round it off for a meal somewhere. [laughs] You know, that’s what we do so that’s been very hard.