Tina - Interview 17

Age at interview: 45

Age at diagnosis: 33

Brief Outline: Tina was diagnosed 12 years ago. Initially she tried to control diabetes with diet alone, then transferred to metformin. In 2004 she changed to insulin and now takes Levimir at night.

Background: Tina is a development funding assistant who lives with her long-term partner and has 4 adult children. Ethnic background/Nationality: White British.

More about me...

Tina found out that she had diabetes 12 years ago when she was 33. She had no particular symptoms, and decided to attend a voluntary screening clinic at her local hospital because she knew her grandmother and other members of her family had had diabetes. Initially she was advised to lose weight and change her diet and drinking habits, but she felt she was being talked down to and says she reacted 'defensively' to this advice. She lost control of her diabetes, and was put on metformin but became quite ill. More recently, since developing neuropathy she has started using insulin.

She has serious problems with eyesight and has had several sessions of laser surgery. She no longer sees out of her left eye and has limited vision in her right eye. In 2006 she was registered blind. She still works and has special sight aids on her computer to help. Tina finds it difficult to walk much because she has serious problems with her feet - her left foot particularly. She recently contracted MRSA and says that she lost almost 20% of her left foot as a result. She misses being able to walk her dog.

Tina says she has always had a positive attitude, though she feels she is largely to blame for the progress of her diabetes. She feels lucky that she has fantastic support from her partner who she describes as 'wonderful' for helping her cope.

Tina was diagnosed in her early thirties and felt angry with herself because she had known all...

Quite angry because I'd, although I was angry with myself, though not angry with anybody else because I knew diabetes was in my family and I was overweight and I knew that I could get maturity-onset diabetes 2, type 2 diabetes, and so I, and I knew all that and I still didn't do anything about it.

So, by the time I got to the point of thinking well maybe I should do something about it now, because I may be getting, you know, I might, because I'm getting to that age, and it was already too late. So I was angry with myself really, yeah.

Tina has regular contact with her diabetic nurse at the GP surgery and goes to the diabetic...

I see the GP I see, well I see my diabetic nurse at my GPs. I also still go to the [local] hospital which is diabetic the [name] diabetic centre there - I still go there but they only see me about once six months. So for more regular contact I would see my diabetic nurse at the doctors.

And what kind of things are they looking for when you go to the regular clinic? What happens to you do you get weighed, measured, blood tests. Can you just talk me through?

Yeah. Yeah. So, you get weighed. You get, they do blood tests sometimes - not all of the time - but most of the time they do a blood test. Most of the time you have to do a fasting blood test before you go to the clinic, about a week before you go to the clinic normally, you do a fasting blood test.

They just generally talk to you about how you've been managing. You know, how your sugar levels, you can keep a record of your sugar levels. I don't actually keep a record on in a book because of my eyesight, but I can, I can keep a record on my sugar monitoring, you know, finger thing, you know, that I prick my finger with to get the blood, you know, it keeps a record on the actual machine. Sorry, I don't know what it's called [laughs].

So yeah I keep a record on that and they just generally talk to me about how I've been coping with various situations. I mean eating out that sort of thing you know.

Tina has had weight problems since infancy and tried many diets but says what worked for her is...

When I was 10 years old, I was 10 stone. I've always been overweight. I was a premature baby - 5lbs something, and in the 1960s the way they got round that was to feed the baby, and feed the baby, and I was fed a lot and I was quite a fat child a fat child, fat toddler, fat child. Always, always big always, never known anything different. When I was about 11 or 12, my mother decided to put me on a diet of cabbage and onions [laughs] - and I did lose weight but I hated cabbage and onions after that [laughs].

So you, you were obviously overfed as a baby?

Yes.

What kind of diet did you have when you were growing up?

It was probably, oh, it was probably just basic. It wasn't lots of junk food like it is nowadays because there wasn't really that much junk food around. But it was probably quite, maybe not that healthy, I mean lots of sort of snack foods and my grandmother spoilt me to death. She used to do a lot of baking on a Sunday and we used to eat it all the week through then you know and so, and it was all the things you know, that people you know liked eating. I mean I can't remember now sort of apple turnovers and apple pies and sort of you know like lots of pastry things she used to bake. So yeah it probably wasn't that healthy.

I went on various diets; probably lost stones over the years but put it all back on again as soon as I stopped. You know, I went to various slimming clubs, tried all the diets that were the diet of the moment. And lost some, lost weight probably I mean probably lost a couple of stone each time 2 or 3 stone maybe, always put it all back on, and then a bit more [sighs].

It's hard isn't it. So what's worked? What do you find has worked because you've obviously got your weight more under control?

Yeah. The thing that's worked is not being on a diet! Because as soon I think as soon as you're on a diet, and as soon as you say 'diet' you're deprived, you want to eat the food that you think you're not supposed to be eating. So now what I do, I only do healthy eating, and I don't eat processed food. I never eat junk food, I don't eat takeaways, I have 5 fruit and vegetables every day. All the time never, never 'not do that' always 'do that'. And I still overeat because I'm still overweight [and] I know I overeat. I've got you know, I've probably got a bigger appetite because I'm overweight - I don't know - but I do overeat and I do know that still, but I'm not as bad as I used to be and I don't eat all the things. I mean I used to eat like yoghurts - I don't eat fruit yoghurts any more because they've got loads of sugar in them. 

You know I'm very careful about what I eat really, and I'm very aware much more aware what's hidden in foods. So I' Yeah and I cook from scratch. I cook meat, vegetables, potatoes every day, and so that makes a big difference I think, because I used to get a lot of processed food.
 

When Tina changed to a different type of insulin she tested her blood glucose ten times daily to...

It was quite a lot, quite a juggling act when I first went on it. More so that the one I originally went on because that was two injections a day, and although my sugar levels were higher they seemed quite stable. They didn't fluctuate that much, but on this insulin you have better control using it, but you have to be much more accurate with your blood sugar readings. You have to be much more aware of taking them, yeah. So.

So how often do you do your blood sugars?

Now I can do them twice a day, and that's fine. But when I had to do them every before I ate, after I ate, four times you know I mean eight times a day, and then I'd usually do it before I went to bed as well. And first thing in the morning, so that's about ten times a day. But my fingers were like pin cushions [laughs]. But I had to do that because you have to be very you have to have very tight control on your sugar levels and get it in with the insulin that you're taking. So.

But that's made it harder for you?

It did in the beginning. Yes, it did. I mean that's quite a struggle to do that because I have to take it to work as well, so it's, it was quite a struggle, but it was worth it I think because my sugar levels have come down more.

And do you feel better in yourself?

I do feel better yes. I do feel better. I used to get really, really tired. I used to be asleep in the evening on the sofa, just fall asleep just watching TV, which I don't do now. I never do that now. But I wasn't aware at the time that that was what the problem was. I didn't, I just thought it was probably just age-related [laughs]. I don't know. I didn't know, I was just tired, I didn't put it down to being diabetic but yeah.

Tina takes one long-acting insulin in the day and another (Levemir) at night which she says works...

Well I had various tablets which were diabetic tablets, and I can't remember the names of them, but they didn't particularly seem to work anyway. I didn't, I never really got fantastic control over my diabetes.

I mean, obviously you know, what you eat affects it a lot, and I wasn't so aware at the beginning about the hidden sugars in food. So I was aware that I shouldn't have sugar in tea, and I shouldn't have treacle sponge pudding or whatever, but I wasn't so aware of the hidden sugars in food and, which, you know, I am a little bit more now. And so I think' That I, you know, I mean that was quite a long time I sort of struggled trying to get control. And sometimes, you know, some days were better than others really, but basically I would say that my sugar levels were always more than they should have been, for quite a lot of years.

Now looking back on it all, what do you think you could have done differently?

I think I should have gone on insulin earlier because as soon as I went on insulin, that my sugar levels sort of came down. And I mean even on insulin, you can still can have high sugar levels, because it does depend on what you eat and it depends on, you know, how regularly you are at making sure you do your injections and all the rest of it. So you still can have high sugar levels but not as high as they used to be on just tablets. So I think I should have gone on insulin, really. But I didn't push it and' You know, that was it.

So when did you go on insulin?

I went on insulin as soon as I had as soon as I came out of hospital after I'd had the MRSA, I went on insulin. I was put on insulin probably about within two or three weeks of me coming out of hospital. And that was obviously to get stricter control on my sugar levels, which did work more or less straightaway and I was on a combination insulin. I think it was called Nova 30, for probably about a year, 14 months maybe, and that was working okay, but then I still needed better control. And after speaking to my diabetic nurse, she said that there was an insulin which, meant that you had to inject more each day, but would give better control, and so I've just gone, well I've been on that around about, probably about a year I think I've been on that.

And that's called?

It's the night-time insulin called Levemir, [insulin detemir] and the day time one' I'm not sure.

It was quite a lot, quite a juggling act when I first went on it. More so that the one I originally went on because that was two injections a day, and although my sugar levels were higher they seemed quite stable. They didn't fluctuate that much, but on this insulin you have better control using it, but you have to be much more much more accurate with your blood sugar readings. You have to be much more aware of taking them yeah.
 

Tina has developed a good relationship with the podiatrists in the hospital who are very helpful...

I do probably again' Because you feel, you do feel like a bit of a victim, and you do feel like, I don't like being talked down to, and so, sometimes, not everybody, but some people can talk down to you a little bit. As soon as you've got a problem, you know, they can talk down to you a little bit, and then and you don't really want to listen then. I don't anyway because I'm not very good at that. But I do like to find things out for myself, and but I also do ask lots of questions as well. I mean if I want to know anything I do ask questions so.

Have you built up a particularly strong relationship with any of the people looking after you, without naming names?

No. I my doctor is particularly good and she is, and my diabetic nurse at the doctors is quite she's very good. At the diabetic clinic you always see different people, so I never, you know the doctors I never, I don't think I've seen the same doctor twice I don't think. So I wouldn't say you have a sort of relationship there really. Although, I do see regular people at the podiatrist and they're very good.

Talk to me about podiatry. What works there?

I think it's because as soon as I've got a problem, I just have to ring up, and they know I'm not just, you know, they know it's genuine with me, and they know that, you know I really have got a problem if I'm ringing up so they see me straightaway. They always do. And they're very straight forward, and they're very direct with you know, the advice they give me, and they it's all common sense. And I mean, you know, like just for instance all the time I had the dressing on my foot, I mean, I did the dressing on my foot. I had to dress my foot myself everyday twice a day for a year, and they were fine about that I never felt like I wasn't doing it right or whatever, I felt always felt okay about' Everything that I was doing, so that was good.

Tina feels she is well understood by her GP and diabetes nurse and that they listen to her ideas.

I was given a whole load of information which was too much to take in, definitely. And also, because I was quite angry about being now 'a diabetic', I felt, when I went to hospital I felt like a bit of a victim. So I actually stopped going for quite a long time. I had a bit of well' Some of the nurses, at one point, said, 'Oh, you know, this is Tina and she thinks she knows it all'. And that was on one visit, and I didn't think I knew it all at all, but I just, I was a bit probably a bit I my, you know my defences were up probably so I didn't, I stopped going.

But then I went to my doctors and my they have, you know, they hold diabetic like surgeries, I suppose, or clinics. And I that was I, that was much better, having more of a one-to-one relationship with a diabetic nurse who I got, you know, got to know so it's a bit better that way. Yeah. And that was so I personally, bought a few books on diabetes and you know, and now of course, you know, I look on the internet and on various sort of you know, because it's much more up-dated isn't it - everything's, you know, the latest whatever they have you know [laughs].

I think that my doctor is very understanding but without being sort of patronising. So I mean she also sometimes she actually asks me what I think should happen - how I think things should go, or you know, not what treatment I should be having, but how, you know, I feel about things - [which] is quite important, because you know you are the person with the problem.

And also my diabetic nurse you know, she very aware that, you know, obviously you know I am a diabetic, but she's very aware that I still work, that I have to fit in my family life, that I have to fit in things that crop up unexpectedly. And so she's very good sort of talking to me about that and giving me advice on how I could deal with different situations, but without again without being patronising you know which is quite nice.
 

Tina believes that poor control of her diabetes caused her retinopathy. She has recently lost...

So when you started out 12 years ago you didn't have problems with your eyes?

No I didn't have problems with my eyes. Well I mean 4, no not, a bit longer than that let's have a look, 5 years ago' Right yeah 5 years ago yes I had perfect vision I went to the opticians and I had perfect vision' I started seeing, I started having problems at work looking at computer screen. I was looking at a spread sheets and I couldn't understand why I couldn't see the figures on things anymore and I thought, oh okay, I'll I obviously need glasses. I do a lot of computer work, that's what the solution is, you know, I need to go and get an eye test. So my work provided me with the eye care voucher to go and get the eye test, and then they said to me, 'Oh you've got a bit of a problem with the back of your eye. You need, they can't do anything there you need to go to the eye hospital. It's something more than just the normal eye test'.

So I went to the diabetic clinic, and they referred me to the eye hospital, and they said at that time that I had bleeding in the back of my eyes. Yeah. And that's caused by well it is actually caused by, I couldn't say it's caused by poor diabetic control, but I think if you have poor diabetic control, you are more likely to have bleeding in the back of your eye I think.

No, it doesn't hurt and you don't know anything about it. The only the only thing I knew is that my vision wasn't quite right anymore. I couldn't see as clearly as I used to be able to see, which I just put down to I needed glasses but that wasn't the case. Yes so I had well I started off having laser treatment actually, and what the laser treatment does is it seals the capillaries at the back of the eye to stop them bleeding. And I had a few laser treatments. On the very first laser treatment where I was where I was awake and you just sit in a chair, I had no idea what to expect I wasn't told what to expect particularly in great detail. And when he lasered my eye because I didn't what to expect, I moved slightly, and he shouted at me - obviously because I wasn't to move - and that very evening when I went to Tescos, my eyesight had gone from the previous week of being able to see the till thing, to not being able to see the till thing any more on that on that same evening. And I think that was because I moved in the, in the chair. And it..destroys part of you know central vision and that's what happened. But since then I mean I've had lots and lots of laser surgery. I couldn't have it sat up in a chair anymore because it was getting too painful. So they sedated me, and you know you go down into the operating theatre and they sedate you, and you they do it and you don't really know very much about it at all. And I had lots and lots of laser surgery like that. But my eyesight really was just getting poorer and poorer really. I think each laser treatment I had I saw a small difference you know maybe a few weeks after, but over the period of time my eyesight's just got worse and worse really. And I've had a virectomy I think that's, I think that's how you pronounce it and that's improved the vision in my right eye but not the vision in my left eye so.

My left eye my pupil's permanently dilated because they did an operation on my left eye which didn't actually work, and the pins that they put in to dilate the pupil I mean they took them out and my pupils dilated and they've said that probably that's how it's going to stay.

So what's the prognosis with your eyesight? What do they think? What do you think is going to happen? What have they told you?

Well I'm hoping it's not going to get any worse because my right eye - I mean I've, I'm registered blind' Yeah - my right e

Tina's employers are very supportive and Access to Work have provided her with a special camera...

I've got some equipment which Access to Work have given, you know, sort of bought and paid for. Well it's also my employer who pays for some of it, and then my Access to Work pay for all the rest of it. So I've got equipment in place which enables me to do my job yeah. Which is computer- based mainly but a lot reading in my job which is what I struggled with, but I know have a CCTV sort of camera next on my desk, which allows me to read.

Does it mean you read more slowly?

I'm incredibly [slow], [laughs] I read incredibly slowly now, yes.