Andy - Interview 04

Age at interview: 52

Age at diagnosis: 52

Brief Outline: Andy has chronic pain as well as diabetes which was diagnosed six months ago. His medication includes Avandamet [rosiglitazone + metformin], simvastatin, Xenical, perindopril, amlodipine and doxazosin.

Background: Andy is a supply manager in IT and is married with two adult children (twins aged 24). Ethnic background/Nationality: White British.

More about me...

Andy realised something was wrong six months ago when he started to feel 'decidedly old' and was also thirsty all the time. His wife persuaded him to go to the GP who diagnosed diabetes. He was completely shocked and distressed by the diagnosis, even though everyone concerned with his care, including his local pharmacist, was extremely helpful and reassuring. Andy has had chronic pain since he was a teenager and had orthopaedic surgery. Since the diagnosis of diabetes he has also been told that his cholesterol and blood pressure are too high. 

Andy cannot understand why he has diabetes and what caused it. He feels it came on very quickly because six months before he saw the GP he had a medical at work and nothing had been picked up. Andy realises that his chronic pain has meant he leads quite a 'sedentary' lifestyle, however he points out that he is not particularly overweight and certainly not obese. He resents the way that diabetes is portrayed in the media as 'the disease of fat people' and he feels stigmatised - though not by health professionals.

Andy says that having diabetes has had a negative impact on his life. He very much dislikes the fact that his body no longer functions properly and that there is no cure for diabetes which means that he has to live with the condition for the rest of his life. He also dislikes having to take 23 tablets a day and that he is now having problems with his eyesight. Sometimes he is short-sighted and at other times long-sighted. The uncertainty about his eyesight can make it difficult for him to cope with his work in IT and he worries about his future prospects.

He talks about having depression - he has recently been prescribed Prozac [fluoxetine] - and discusses some of the causes including living with diabetes, loss of status at work and worries about erectile dysfunction. He values the support and straightforward advice he received from his GP. He also sees a diabetes specialist nurse who does her best to reassure him. Andy feels very well informed about diabetes and regularly checks the UK and US websites looking for the latest research about diabetes. He takes Avandamet [rosiglitazone + metformin] which suits him well at the moment. 

Andy has regular eye tests (he chose to go privately for treatment) and also sees a podiatrist though he has no problems with his feet. He was invited to join the Expert Patient Programme (now Self-management UK).

Andy finds the language of media reports offensive and stigmatizing.

And do you do you have any thoughts about diabetes is portrayed in the media?

Yes. It's 'a disease for fat people - fat couch potatoes'. 'It's a social disease' - is what everybody says. Everything you read. I don't think I fit into the category.

So do you think the media misportray it? Misrepresent it?

Yes.

Can you think in particular of any examples somewhere an article you've read or something you've seen on telly that you think they've got very badly wrong?

I don't know so much that they've got it very badly wrong, it just irritates me when they go on and say' Let me give you an example. There's been a lot of fuss recently about avandia particularly in America, about how it causes an increase in heart problems. And you'll read an article in the Times on-line, or the Boston Globe on-line or whatever, and in the course of the article it will explain to you what diabetes is - 'Diabetes is an illness that fat people get. Diabetes is prevalent amongst overweight people and the clinically obese', and all this that and the other'.

And they always make a point of saying that and how it's 'a social plague' and all this that and the other. And you just read it time and time again and that is, with a little 'd', depressing because I think there has to be more to it than that.

I know that I was perfectly fine December 2005. Six months later I'm have diabetes very. Now, did I get a virus? I don't know, nobody's ever tried to find out where I got it from. I'm not overweight. I'm 6'2' and fifteen and a half stone - I could do with losing about a stone but I'm not hugely overweight. I'm a little bit overweight. I don't sit down and do absolutely nothing, I just don't do a lot of exercise because of the pain.

I don't throw lots of pain killers down my neck so it not a reaction to pain killers. I take fewer pain killers than most people I know, because I'm so used to the constant level of pain it's only when it gets to excruciating that I have to take something. So, I don't know where it's come from and it makes me angry when I read' It makes me angry that I've caught something that appears to be a social stigma - that's the way it's portrayed. I might as well have a sexually transmitted disease to be honest. That's how I feel. And yes that makes me feel, I'm getting all angry. That makes me angry.

So you feel stigmatised by it?

Yeah but only because of the way it's portrayed. My GP doesn't treat me that way. Nobody in the health service treats me that way' It's just the way it is in the press.

Andy attended a morning workshop about diet but says it told him nothing he didn't know already.

It was a disappointing morning for me because I didn't there was absolutely nothing they told me that I hadn't found out for myself by researching on the internet, and reading leaflets from the doctors, and I'd also gone to occupational health at work and they'd explained to me about it as well so I'd found out what I could.

I was comfortable that I was eating pretty healthy and I sort of sat down, a very uncomfortable morning because I do struggle sitting with my back, in this room for a couple/three hours while this woman was giving us all this information. Now, there were a lot of other people there that really needed the information so it was good, it was that just from my perspective it was a waste of a morning, but it was right that the health authority did it. And I was also referred to the my GP practice, I've got a diabetic nurse so see her. And [she] talks through things and says reassuring things and pats you on the back and, you know, well that sort of hand-holding and 'huggy' type of stuff.

Andy had felt as though he was young and invincible and says being told he had diabetes was one...

I have to be honest and say that I don't remember. I know that generally speaking my GP was very good, was very calming, explained everything to me several times, was very reassuring but I can't remember any of what he said hardly, apart from the fact you've got diabetes. You know. I just' I think looking back I was actually in shock.

Because of my chronic pain, I think as a defence mechanism to that, I had convinced myself, irrationally but I had, that I would never have that kind of illness. I was going to live forever. You know, yes I'm going to have sore joints, but I'm going to live forever. And to all of a sudden to feel very mortal and very vulnerable. This was worse than [when] I went through a divorce a few years ago - which was unexpected - this was worse, far, far, far worse. This is' I don't think I've ever felt so bad as that day.

What was it about the diagnosis that that upset you to that extent? Can you just explain?

Just the fact that I'm mortal. You know, if I'm honest. I just never expected to have anything like that. It's not going to it's not that it's not going to happen to me, I just never expected it. I always knew that I was going to have pain and that I've got orthopaedic problems, and probably have to have my knees and my hips replaced and, yeah okay, that's fine, you know it's, it's just stuff that you're going to see the doctors and the surgeons and they sort it out for you and you get, you know, you use your walking sticks or your wheelchair or whatever and you just get on with life.

This is totally different. This is my body not working properly inside and it's going to be like that for the rest of my life. All of a sudden I've gone from just having pain to I've got' I'm hypertensive badly. I'm 200 and something over 100 and something. I've got high cholesterol, and I've got diabetes which is sort of 17 or 18 or some huge enormous figure, when I'm supposed to be down in the 3s' And it can't be cured.

Andy doesn't know exactly what caused his diabetes but says that chronic pain has always made...

Because of chronic pain I'm relatively sedentary. I don't do exercise' I'm not exactly a couch potato, but I don't go and do exercise.

Interestingly I had for four months from January through to at the end of April, I joined the gym and I was going swimming every other day. And I gave that up simply because my joints were just hurting more and more. It wasn't actually, whilst I felt my chest improving, the rest of my body felt so much worse' In hindsight I just wonder whether that was the diabetes coming on. But I didn't get any, I didn't feel any benefits from the exercise, so I gave that up as a bad idea.

It seemed like a sensible thing to do so I gave it a go, joined the gym. I can't use the gym equipment but they've got a swimming pool, so I'd go every morning before, every other morning, before work go and do sort of fifteen to twenty minutes in the pool. Didn't help - gave that up' I'm not suggesting that starting exercise triggered the diabetes at all, but it's just I had done some exercise and I felt the benefit in my chest, and breathing became easier' But, no I didn't feel the benefit anywhere else and my joints ached.

I know that I was perfectly fine December 2005. Six months later I'm diabetic - very - now, did I get a virus? I don't know. Nobody's ever tried to find out where I got it from. I'm not overweight. I'm 6'2' and fifteen and a half stone - I could do with losing about a stone but I'm not hugely overweight. I'm a little bit overweight. I don't sit down and do absolutely nothing, I just don't do a lot of exercise because of the [chronic] pain.

Andy scans the internet everyday but gets confused when dietary information from US and UK...

So, I'm diagnosed diabetic, on the internet, find out what I can. What I found was that the information coming from UK websites seemed to be completely the opposite to information coming from American websites. It just seemed to be the opposite message about things like what you should eat and what you shouldn't and all this that and the other.

Now whether it was my understanding of it I don't know, but it was they just seemed to contradict each other. And there were things like Dr Atkins saying he's cured his wife of diabetes just by giving her a high protein diet and all this that and the other. Everything I read tells me high protein diet is not good for diabetics.

And there's a huge amount of information on the internet, but you have to be careful what you read and where you read it from, because not all of it is from authoritative sources. To this day it irritates me the number of people that quote Wikipedia as an authoritative source. Anybody can put anything they want on there you know.

Andy has chronic pain as well as diabetes so found blood testing painful at first.

One of the most difficult things for me was doing my blood tests every two hours. I absolutely hate doing that because I am needle phobic and deliberately stabbing myself to make blood come out is something I find difficult to do. And after about two weeks of doing it every two hours, my fingers were so full of little scar tissues, that I was actually having struggling getting blood out. Getting the machine out and the blood would drain from my arm - 'You're not having any of me'.

So how do you manage that now?

Well I don't have to do it so often now, I only do it now when I feel a bit, something doesn't feel right and I have to check what my blood is.

Right. And did you, did they teach you how to do that?

Oh yes. The diabetic nurse at the, when I first saw her, the first time I saw her a few days after I was diagnosed' She said, 'Oh I'll give you a machine and you test your blood and this is what you put the sharp thing in here, and you put it on there and you press this button and it stabs you.' I mean they're all very matter of fact. 'You know, you have a go'. And it hurt [laughs].

You see, one of the problems with chronic pain, is that little pains become big pains. People don't always understand that. So the little tiny scratch is actually a very sharp pain for me. Because my brain can focus on that compared to the pain in my back. And so it does. It's just one of the problems you have if you're a sufferer of chronic pain.

Andy discussed the pros and cons of Avandamet with his GP.

So I'm seeing my GP. So we spend four months stabilising me and getting me on to the tablets that I'm now on. We tried metformin and gliclazide and I was up and down like this, my blood sugar was all over the place, it just wasn't stable. One minute I was 10 point something, the next I was 3 point something. And there was no relationship to the type of food I'd been eating, it was just, it was all over the place.

My blood pressure was being stubborn and not coming down. And my cholesterol had come down but not come down enough, so there was increasing the statins and they're horrible when you first start taking those because they really, you take them last thing at night and you just spend all night with like indigestion when you first take them, and it's pretty uncomfortable.

Eventually we moved me from metformin and gliclazide to a new tablet called Avandamet, which is metformin and Avandia. It is a very strong dose of metformin it's a 1000 mg twice a day, combined with a low dose of Avandia - the 4 mg now this, I can't remember the proper name, but I think it's 'rosiglitazide' [rosiglitazone] or something. There's a big fuss about this tablet because it apparently has an increased risk of heart problems, for people that take it.

I discussed this with my GP because he said, 'Look, are you concerned about taking this tablet?' I said, 'Well no, because taking this tablet has reduced the risk to me from all the other things that diabetes gives me. So overall, my risk of getting something is lower and if I don't treat my diabetes I've got a higher risk of heart problems anyway.'

I don't, I haven't had since I've had the medication all my chest pains have stopped. So, no I'm my only concern is that they will take the tablet away from me not that, you know, they'll say no we can't, because I've looked at all the alternatives - I've done research on the internet - and the side effects of all the other alternatives are worse, in my view, than what the Avandia has, so I'm comfortable with that. I reassure my GP every time I see him that I'm happy with that.

Andy felt shellshocked when first diagnosed and was grateful to his local pharmacist for being so...

Okay, so I came from work with the phone ringing. It was the GP, it was a Friday, and he said. 'Yes, you've got diabetes, I need to see you. I can't see you today, so first thing Monday'. So round to see my GP and he said. 'Okay. Right. First thing I have to tell you is that we can't cure diabetes'. And obviously I must have looked quite, and he said. 'Don't worry, we can control it. Most of the control has to come from you, okay?' He said, 'But we can control it. And we're not looking at injecting and things like that, this is called Type 2 diabetes'. And he said lots of things and it was just all going over my head. I, I couldn't understand. I was shocked to be honest. He explained that a blood test to show that my cholesterol was very high. He took my blood pressure and said my blood pressure was very high. So there was a number of complications he was concerned about. I also mentioned I'd had a few sort of chest pains and things. So he later on organised an ECG because that was giving him some concern. So basically what he had to deal with was a 51 year old that was diabetic, where my HbA1c was very high, he said that the way I was going on within 2 weeks I'd probably have collapsed and been taken to hospital. So he said, 'We need to get this under control'. And he said. 'We need to bring your blood pressure down, and we need to sort out your cholesterol'. So it was take a statin every day, take an aspirin every day, have to start helping the blood. There's a blood pressure tablet to take every day.

And then for the diabetes there was a metformin and a gliclazide. So it's then off clutching my prescription off to the chemists where I'm sort of pretty shocked, shell shocked I think, and the chemist sort of looked at the prescription and said. 'Oh, newly diagnosed?' And I said, 'Yes'.

So the pharmacist asked me to sort of go to a little room that they've got and just sort of said lots of reassuring things whilst they were preparing my prescription. You know. 'Don't worry about this. It's not the end of the world. Diabetes is something that lots of people have. Just be a little more careful about what you eat and just take the tablets and you can lead a perfectly normal life. Don't worry about it'. Which I thought was'[It] actually cheered me up more than anything else to be honest.

Depression caught Andy unawares but taking an antidepressant has helped.

The one thing that he warned me about there are side effects with a number of the drugs, medicines sorry, that I'm taking, can cause depression. And I could see on occasions like this black fog coming down, and I knew it was depression, and I fought it and I fought it and I fought it and I wouldn't let it get to me. I had a bit of a bad time a work and next thing I know is [clicks fingers] I'm depressed. And I could recognise it but there was nothing I could do about it. I didn't want to do anything about it actually. I suddenly went from, I am going to fight this to, I've got it and I don't care. I didn't care. I didn't not care either. I didn't do anything'

Eventually I kind of, yeah alright, I'll go and see the GP. Made an appointment and he asked me all these questions. There was ten questions he asked me, to do with state of mind and what you're thinking and stuff and. 'Yep', he said, 'You're depressed' [laughs]' So he put me on Prozac. Again I reacted, quite upset tummy and stuff for the first few days I was taking that. And there's a bit of spark back to me now.

Andy thinks that his erectile dysfunction may be a side effect of Prozac which he takes for...

The one thing that he warned me about there are side effects with a number of the drugs, medicines sorry, that I'm taking, can cause depression. And I could see on occasions like this black fog coming down, and I knew it was depression, and I fought it and I fought it and I fought it and I wouldn't let it get to me. I had a bit of a bad time a work and next thing I know is [clicks fingers] I'm depressed. And I could recognise it but there was nothing I could do about it. I didn't want to do anything about it actually. I suddenly went from, I am going to fight this to, I've got it and I don't care. I didn't care. I didn't not care either. I didn't do anything'

Eventually I kind of, yeah alright, I'll go and see the GP. Made an appointment and he asked me all these questions. There was ten questions he asked me, to do with state of mind and what you're thinking and stuff and. 'Yep', he said, 'You're depressed', [laughs]' So he put me on Prozac. Again I reacted, quite upset tummy and stuff for the first few days I was taking that. And there's a bit of spark back to me now.

Are there side effects with Prozac?

Well there are side effects to everything. Most the worst side effect to everything is erectile dysfunction. I was struggling anyway with my bad back because of the damage to my disc and lower back, so there was a problem anyway. But the combination of all these tablets in my system has just finished everything off. So that's a contributor to depression for a bloke particularly.

The tablets, I think it's the tablets that were sort of, because depression, as I understand it, is a chemical misbalance in the brain, and I could kind of see that it was there and I'm pretty sure that the tablets were contributing to that; mucking up the chemical balance, so it was kind of there but I was fighting it off. 

Andy works in IT and now finds it hard to read from the computer screen which is stressful.

The most difficult thing for me workwise, forget the getting over the side effects of the tablets, that's just a period of uncomfortableness; stomach aches and all the rest of it, it's the fact that I work on computers, and I can't read the computer screen. My eyesight is either going from long sighted to short sighted or its in between, and I'm just struggling to focus on the computer screen. I'm sitting about this far from the computer screen. I'm taking my glasses off. I'm constantly having to adjust where I sit and how I how I adapt to the screen and it's just a nightmare. It's the most difficult thing. You go to meetings and I sometimes I'm writing like that, sometimes I'm writing like that and trying to take notes. And someone says, 'Come and look at this on the screen', and I can't because I can't read it. I have to sort of stick my head in front of theirs.

And I'm also, we've got an awful lot of fluorescent lights at work and I've found that I've become very much more sensitive to the fluorescent lights, so I have to upset all my neighbours by having the lights turned off where I sit. Whereas everybody else likes it nice and bright, I don't want it bright. So it creates little tensions and little niggles.

Andy says that people at work don't understand diabetes and how it affects him. His working day...

My fear now that I've never had before, is that if the company I work make me redundant for whatever reason because, you know, economies being, economics being what they are, companies do that kind of thing. Because not only do I have chronic pain but I now have diabetes, I now have hypertension, I now have depression - all these things - I won't be able to get another job' Not because I'm not capable, but because I'll be viewed as too much of a risk.

I have one of the best sickness records at work. I have so little time off compared to other people. Every few years I have a lot of time off because of orthopaedic things, and then I'll go for three or four years without even having a day off for a cold' That won't be taken into account. You know, 'Oh you had three months off last year for diabetes, why - it's only a sugar thing isn't it?' People don't understand what it is. They don't understand that you can't see, you can't think, you know, you spend a lot of time asleep. They don't understand that now with diabetes you're not processing your food so you don't get the energy, you haven't got the energy level that you had before. You fatigue a lot more.

My work pattern used to be I'd get to work about 6 o'clock in the morning and I would work through sort of 4 -half 4 something like that. When I was diagnosed as diabetic the first thing work said you can't come to work that early, we can't have you in the office, you have to, you can't come in before 7 o'clock, when other people start to arrive at work. You can't work late into the evenings. You cannot be in the office alone' Which is fair enough. So it means I'm spending less time at work but not only am I spending less time at work, but I'm also less productive when I'm at work, I'm less effective. So it's a bit of a double whammy. So I've had to come to terms with the fact that from now on, you know high let's try and back track and down grade to having a job. Get rid of the stress.

Andy dislikes having diabetes because its taken away some of his personal freedom.

I don't like having it. I don't like having to take all the tablets . I don't like' It's taken some freedom away. I can't just go out have a thumping great big ice cream with a chocolate flake in it without feeling guilty and thinking well okay I'd better do something different... you know. I don't like the fact that I can't munch my way through a pound of grapes because that's just too much sugar.

I just' I love food. Okay, I cook for myself. I can't, I can't go and make a meringue. I can't - I don't have a sweet tooth -but every now and then you just want to make something, and I just can't. I just have to think an awful lot more about what I'm doing'

I don't like the fact that it kind of upsets my family far more than me you know. I've got twins, I mean they're 24 now, and as soon as they heard I was diabetic they bought me a bracelet which says 'diabetic'. Wear that for the rest of your life dad. Jingle jingle jingle' It concerns the people that I love, a lot. I don't like that. I don't like having this thing that will never be cured in my life-time. I think that looking at medical research, they are going to be able to cure it a few decades down the line. The work they've been doing is quite stunning, but its no good for my lifetime.

I've got this thing for the rest of my life. I don't plan on dying anytime soon, so you know for the next 40-odd years when I'm in my nineties I am going to be taking 23 tablets a day or more. I don't like that.