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

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.

So I went on for several years just, you know, thinking, ‘Oh, well, one day, one day I’ll take it seriously, one day I’ll take it seriously. And it took me actually three and a half years to take it, to take it seriously. And there were two things really that prompted me to take it seriously. One was I was beginning to get very painful feet. And the other was I went for a retinal screening, I think it’s called retinal screening, for my eye. And the den-, the optician said, ‘Oh, I can see you’ve got diabetes. You’ve got a small aneurysm. And my heart just stopped. It actually, I thought, ‘Oh, my goodness. You know, it’s going to rupture. I’m going to go blind. So he reassured me that it was very small and, but they’d have to keep an eye on my eyes just to make sure that it wasn’t. So I came out of the optician’s determined that I was going to change my lifestyle.

Basically I was diagnosed when I was 39, back in 1992 roughly. Went to an optician’s a routine eye test. Had no history of diabetes in the family or anything like that. I’d had a motorcycle accident a few years before and damaged my eyes, so they recommended having a follow-up, you know, check. And didn’t wear glasses, you know, never needed glasses. And the opticians were starting to go, ‘mmm’ Yes’ you know, and, ‘We think theres a problem with your eyes. You know, take this letter to your doctor. Didn’t think anything of it, having had the motorcycle accident. The doctor did some blood tests. I didn’t know anything about diabetes at all. Said, ‘Right, you need to go to, and see a consultant. And that’s when they started talking about diabetes, and sort of frightened the life out of me completely. And what it is, I had retinopathy, which is damage to the back of the eyes. Because I’ve learnt since that someone with diabetes has had it, type 2 diabetes possibly for up to seven years. So, yes, I’d possibly had it for seven years. You know, so had the, the diabetic retinopathy, was overweight, so, and I was sort of middle-aged, so it was all the classic things. Was tired, but left, you know, had a young family, busy job. So you tend to think, you know, that’s all. But looking back I had all the classic examples of thirst, going to the loo a lot, tiredness.

So, in your eyes, or in your feet, you haven’t had any diabetic symptoms?

When my diabetes started, then my eyes had become very red. So, our family doctor, he had noticed himself. That, in my eyes, he felt there was something, so he said to me, ‘We need to test your eyes, so if you have time, then come, come to my clinic. So I went, so they tested my eyes very carefully. And straightaway, he sent me to the hospital, that, ‘As quickly as you can, get an appointment for yourself. So I got an appointment, and then my eyes, they had to laser them. They said that, you know how you can have clots at the back? That’s what had happened, so they did that twice, but then since then it hasn’t come back, because I’ve got my diabetes under control. So that’s why the clots didn’t come back.

So how long ago was this?

It’s been 10 years now. So not again, they haven’t had to do the laser again. I go every six months for a check-up. And they say, ‘It’s fine’, so, if you control it then your eyes stay fine. They had lasered my husband’s eyes too, and now, it’s quite a while and it hasn’t happened again. Because, we don’t eat sweets and all.

Well the main thing, which we haven’t mentioned yet, is that I did get very bad foot ulcers, and that was one thing that I wished I had had more emphasis on from, well me reading it, but also from the system. I mean I knew that you lose a bit of sensation in your peripheries and after I came out of hospital I went to a private podiatrist who ran filaments all over my feet and made it clear that I actually hadn’t got much sensation in my feet. I can feel obviously when I am treading on them – they’re not numb – but I don’t get any major sensation. And as a result, because I didn’t realise just how careful I should be I picked up a couple of bad ulcers. I don’t know when the one on my left foot came but on my right heel I think I had a bad cracked insole in a shoe and I walked quite a long distance on it, and it got so badly infected that as soon as I went to the podiatrist, he put me straight into hospital. And I spent six weeks in there you know, just mostly, I pretty well discharged myself in the end, because I was just lying in bed, waiting for ten minutes of treatment every day.

But it took, that happened in end of January after I’d been diagnosed’So that’s a year and a half ago. But I thought everything was going well. You know, I came out of hospital, my vision got right. I started driving again and then about a few weeks after that my, this heel infection came in, and that actually didn’t heal over until August. That pretty well put me off. I had no work – I had to miss working. I had to miss my summer work for the university invigilating. I couldn’t do any careers advice, so basically most of that eight months I was sitting in this chair or something like it, with my feet up staring at day-time television which was pretty boring.

Luckily thanks to the podiatrist and the care I mean that got better. But I have been told that I can’t, I will never be able to walk any distance on my feet again for the fear of it going. I’ve got NHS boots which seem to protect it, but after, I had a’ Last Christmas I did a bit more invigilation which involved one what would have been a minor walk in the days of my youth, just about a mile, and the heel broke down again and it was another three months before that healed over.

Neuropathy. They do test for that. And there’s a little bit of loss of feeling, but not a great deal. I’m very conscious of the fact the feet need to be looked after. Because they’ve warned you that if you wander round your flat or anywhere in stockinged feet and you step on something sharp like a nail or a pin, if you’re losing the feeling in your feet, you could step on it and not know, and it could go septic. So I always wear hard-soled or strongly soled shoes in the house. Never go anywhere barefoot, apart from stepping out of the shower onto a bathmat and then straight into slippers.

I have lost some of the feeling in my feet which quite amazed me. I call them tuning forks, which they vibrate, and they put them on your leg, knee and when they put them on my toe I said, ‘No, I can’t feel that. [laughs]. And I have got some loss of feeling in my toes. It is not serious and it hasn’t worsened over the last four years, but I didn’t appreciate that that was the case.

It’s been explained to me, loss of feeling, if you get a cut or a sore and it does become infected with loss of feeling, you are unaware of it. So the need to take care of my feet as well has been emphasised to me, so I do try and take more care. I do trying and check them occasionally and make sure I do see the chiropodist once a year the same as the optician, so I do ensure that I do get the right checks.

So’ And the loss of sensation in my toes, as I say, it’s not great, I’m almost totally unaware of it. So it hasn’t bothered me at all, other than the fact that I need to keep an eye on it to make sure that when I get any sort of cuts which turn septic or anything like that, you know, which I might be unaware of. So I haven’t suffered any physical discomforts whatsoever from diabetes.

One of the other problems of my diabetic feet is you don’t have any point of reference of where your feet are. You can’t feel them on the end of your leg. And that in turn affects your balance. So nowadays I can’t walk up and down steps without the aid of a banister or a rail. And that, that is the most recent development. And that’s one of the things that I find the most worrying, the fact that I can’t walk up and down steps. As I said, I’m a rugby fanatic. And you go to Twickenham and you’ve got to walk, or if you’re unlucky enough to be in one of the higher seats you’ve, you’ve got twenty or thirty steps, very steep steps, to go up with no railings. So now I usually get one of my friends to walk up with me and I put my hand on their shoulder. And coming down is even worse, because you’re well aware that if you fall, there’s about 5000 people in front of you, and if you start the old domino effect, you know, it could be a problem. So I’m very, thoughtful about when I go from a stadium. And I wait until most of the people have gone, and then my friends and I just walk down. I have support from them. But my feet are no, are no more painful now than they were five years ago. They’re no worse, but they’re no better.
You mentioned about the blue badge?
Yes.
How do you feel about that?
I’d rather have the full use of my feet. But I do find the blue badge is very useful because I find it hard to walk more than 100 metres without pain. Well it, I’m always in pain. When I walk I’m always in pain. I can stand it for a while, but then I do need to rest. I mean that is the only way that my life has changed, that I cannot walk any distance at all now without resting, without taking the weight off my feet. So I do find the blue badge is absolutely necessary to me.

Oh yeah, so yeah I’ve had it for seven years and it’s, I say it’s getting worse but it, I think it’s plateaued for about the last six months where I’m, I, you know, just a, whether it’s a we’ve reached a pain, the part that I’m, I’m managing to live with it now and it doesn’t seem to be getting any worse. And , I’m coping with it’s restrictions, I’m learning to understand what the problems are and that, as I mentioned, like I said but if I walk too long, too far, I start to stumble and trip. Wee things, it’s not life threatening in anyway that kind of problem but it’s something I’m aware of And, I got a problem with my balance as well which I’m not too sure what that’s linked to And example would be if I’m walking along the street and I glanced over my shoulder to, to look for oncoming traffic I’ll wander off the straight line. I know it’s going to happen but I keep doing it, it’s, like a bit of insanity, and it’s like coming to a street corner, if I don’t come to a halt and then look over my shoulder, and then I’ll wander away, and it’s just weird it’s not a major problem but it’s something you need to learn to live with’ And again if I was walking along the road and I looked across in the opposite side of the road that would cause the same effect. So it’s, multi-tasking is out of the window when you’re walking [laughs] that’s basically it. So aye it’s okay it’s liveable.

And, at that point, instead of doing the filament test for neuropathy – they poke you with a plastic needley thing and if you go ‘ouch’ you’re all right – he did a tuning fork test. And, again you can feel that, or not feel it, depending on what degree of nerve damage you have and how far it had it’s up your legs. And he discovered that, at this point, I had deep neuropathy that was three quarters of the way up my shins, but it didn’t affect the surface of the skin on my feet, so I could still feel this damn pinprick thing. But the neuropathy was there and was going to get worse unless I did something about it. And so, that again was another critical thing, another diving straight back into the research literature, and finding out what kind of blood sugar levels damage nerves, or, particularly, the nerve sheathing.

It’s the myelin sheathing thing that goes first, and it turned out that that was pretty well anything above seven millimoles. So once I’d got up to eight, it was important to panic, to do something useful about my diet, to go out for a walk and keep below seven and above four at all times. And after a few months of doing that, my feet started to hurt like hell. Absolutely excruciating pain – you know the fairy story about the mermaid who wished and wished and wished for feet, and her feet, she got feet but it was like walking on knives – that’s what it felt like for, for months and I can feel, if I ate something and I went too high, I could feel the pain starting and then increasing as I went up through the, the blood sugar mark. And it took months and months and months for that to heal completely, but it finally has, and I have no neuropathy at all by anybody’s tests and in fact, that was the, the trigger that decided me that I’m as fit as anybody else and karate would be a good thing to do. I could probably play squash now as well, except I don’t enjoy it.
So, do you think you’ve reversed it?

I’m sure I have reversed it and I, I’ve proof that I have reversed it – through diet and exercise and keeping below damaging numbers – through testing and, you know, finding out about what those, what produces those damaging numbers.

Well, basically the thing is, this you know kidney failure is also something that I got from diabetes. So when your sugar is raised, it starts having an effect on your kidneys, the sugar. So, my, from 2000 onwards I started to get a swelling in my legs, swelling inside my legs and all my blood started to become dilute, soThe doctor admitted me [to hospital], thinking that perhaps it could be a problem with my kidneys. So then we had all the tests, and then found out that my kidneys, you know, were only working 10 per cent. So then they put me on dialysis.

So, on dialysis, the main thing is that they have to take out all the fluid from your body. And, it is god’s grace that, it’s been six, no seven years now being on dialysis. In the beginning sometimes I used to get low blood pressure, sometimes it would be high, sometimes I would get cramps inside my feet. But now, you know, there’s all these new technologies, for instance for cramps you can get these tablets, new tablets [XXX] they are called, so that you don’t get cramps in your feet anymore. And, so thank God I don’t get low blood pressure anymore. So quite comfortably we got, I get dialysis for three or three and a half hours and then come back. That’s it.

So when you have dialysis, is it uncomfortable or’?

Yes, in the beginning, I used to feel, what is this, nobody in my family ever had to go on dialysis. So in the beginning when I used to go, then I used to cry a lot, in that ‘what is this that has happened to me, here?. So you know, my husband used to take me there, and he’d go to pick me up.

So you get needles inserted here [points to arm], you get needles inserted here. There is a fistula made here. And they put two needles into it. So with that they clean your blood. So, they clean your blood properly, all the water comes out. Three litres sometimes, sometimes two and a half litres, sometimes two litres’ As much as you drink, the same comes out. Because your urine, only a very little comes out, you only have a small amount of urine. You pass only a very small amount of urine, and so via the blood they take it all out, the fluid. So, dialysis patients also need to be very careful, that you don’t drink much. So I normally just use ice, I don’t use water. No juice, no juicy fruits. And no drinks, just a bit of tea, about a quarter of a cup I drink in the morning, and another quarter cup of tea in the evening. Because for each patient, in the whole day, they are only permitted 500ml So basically, that’s the thing, here I am, alive before you. I go for dialysis, three days a week, Monday, Wednesday and Friday.