(1) Tell me about your parents.

I came from a middle class family, I would call it.  We weren‘t very poor, but we weren‘t very rich either. There was Mum, Dad, and there were four children.  I had two sisters and a brother; I was the middle girl.  Dad worked in a factory, and he had several other jobs, which I can‘t remember all of them obviously, and Mum was the same.  My mother was Welsh and my father was English, but my mother came to England because they had no jobs in Wales for women; it was mostly down the mines.  Her father worked in the mines and some of her brothers.  And so she came to England and she met my father.  They both ended up working for the RRE, a government place in Malvern, which is now closed down.  I went to Somers Park Avenue Primary School for first years at school, and then, when I was eleven, I went to Dyson Perrins C of E Secondary School in Malvern.  And I was actually one of the first pupils.  The school had just opened and there was only four classes, I remember, and the school hadn‘t even finished being built.  And it was quite a thing for me to go to a secondary school and I was quite worried about it, and then I realised there wasn‘t many children there anyway and there was nothing to worry about.

What kind of school was it - a secondary modern?

Yes, it was a secondary modern, Church of England, normal secondary - whatever they are, like.  And my own two children actually went to Somers Park Avenue, the same as me, the primary school, and then when they were old enough, they also went to Dyson Perrins school as well.

What age did you leave school?

I left school when I was fifteen. Well, I wasn‘t actually fifteen.  I left school in July and I wasn‘t fifteen till the August.  And I remember my first job - I found this post and I couldn‘t start because I wasn‘t actually old enough to start; I had to wait till I was fifteen in August.  And I worked in one of the first type supermarkets in Church Street in Malvern.

(2) I met my husband when I was actually working there.  I met him when I was fifteen; we‘ve been together very long time now.  I also worked in a small grocery shop, which was totally different to this supermarket I worked in. It was much more friendly, and you get to know the actual customers - instead of them just being faces, you knew their names.  I‘ve also worked in a café type place, Church Street, and I did waitressing there and I did some cooking there.  It was called the Flamingo - it‘s not there now, it‘s gone.  That was a really nice place to work.  And then eventually, after a couple of years, my husband and I - we got married, and we were very young when we got married.

How old?

I was seventeen when I got married, but I was eighteen in August and we got married in the June, so I was actually seventeen when I got married.  Then I had my first child, a son, and then a couple of years after, I had my daughter, which was when I actually found out that I had sugar, when I was carrying my daughter.

Was it called diabetes?

Yes.  I wasn‘t sure at the time though - I didn‘t know exactly what I had.  I was quite worried, and I just left it and left it, until my husband said "now, there‘s something wrong, so we‘re going to get the doctor".  Well, what happened was, you see, I had the baby and they noted sugar in me then, but they said mostly, whilst you‘re pregnant, a lot of women do get it and it just goes; they don‘t have to do anything about it.  But it so happened that with me, I went on twelve months not realising that I still had the sugar, and, of course, I was quite poorly.

What were your symptoms?

Well,

(3) my symptoms were drinking all the time, which was terrible - having this terrible, terrible thirst, and no matter what you did, you could not quench this thirst. And I used to, well I used to do totally the wrong thing really because I used to drink pop - whatever I could get my hands on; water as well, because I was desperate most of the time.  And then I suddenly realised that I was losing a lot of weight.  And I thought "well, this is not right, there must be something wrong", you see, drinking all the time, losing all this weight, and I was eating, really.  And, of course, you see, when you‘ve got two small children, which I had then, you don‘t have the time to really take too much notice of yourself, and so I just carried on.  And I think this was going on for must have been nearly twelve months, before my husband insisted upon calling a doctor.  So the doctor came, and he was actually quite shocked at the amount of sugar that I‘d had in my system at the time, and he said something like "Mrs Baker, any normal person" - which I thought was quite funny, because I thought I was normal anyway - "any normal person would have gone into a coma, but not you" he said.  So, I straightaway said "well, I haven‘t got time to go into a coma, because I‘ve got two children to look after", and I said "and the other thing is, I spend half my life drinking, and the other half at night - I don‘t sleep; I spend half the night getting up.  Because I keep drinking, I keep getting up to go to the loo".  So he laughed, and he said "well, I‘m afraid you‘re going to have to go into hospital".

(4) I went into Ronkswood Hospital, but the GP had actually said that he thought I was diabetic, so the reason I went into hospital was because they wanted to stabilise me, and probably teach me, if I had to have injections, to do the injections, which I then found out I did have to have.  I mean, at first I was really worried, really frightened, you know, thinking that I‘d actually got to live with two injections a day.  I thought "oh gosh", you know, "what am I going to do?".  And it was quite frightening, but the nurses and doctors in the hospital, they were really, really helpful to me.  But I… first of all, I didn‘t want to do it.  I just felt so sorry for myself.  I thought "gosh, this isn‘t going to be much of a life.  I‘m only twenty one. What am I going to do?  And how am I going to learn to live with this?". Anyway, my husband come in to see me, as he normally did, and I was just laid there feeling sorry for myself.  And I said to him, I said "oh, I don‘t know", I said "I just wish I was dead", I said "I‘m never going to be able to cope with this".  So, he sat there a minute, thought about it, and he said "well, I think you‘re being very selfish", and I listened, and he said "well, what about me?  What about the two children that you‘ve left at home?  Who‘s going to look after those?". And I thought to myself.  I thought "yes, he‘s right.  The sooner I learn to do this injection, the sooner I can get home and be with the children and him again".  So then I pulled my socks up and I said to the nurse, I said "I‘m"...  They‘d actually started teaching me how to do this injection in an orange.  They gave me an orange, and you like fill it with water - the syringe - and they‘d show you how to squirt the… take the air out of it.  And I had great fun with this orange.  It was fine, you know, doing it in the orange.  It was lovely - I couldn‘t feel a thing!  And so I kept saying to the nurse "yes, I‘ll do it myself tomorrow.  I‘ll try one and do one myself tomorrow", so she said "fine".  So the next day came, and I said "I really am.  I really am going to do it myself". So she gave me the insulin, the syringe, and they‘d showed me… already showed me what to do, so I did it.  And the first time I did it in my leg, it did hurt a little bit, because obviously the things we used then are totally different to what you use now, and I jumped a bit when I did it, but I was so pleased with myself.  I really was pleased with myself - I couldn‘t believe it.  I said "I did it", and the nurse said "yes, you did", she said "you did very, very well".

(5) What were the syringes like?

Well, this was 1969, and the glass syringes - they were actually made of glass.  And what you had to do, before you could even use it - it was new when you got it obviously - but before you could use it, it had to be boiled up in a saucepan very, very carefully, and the needle as well.  But, as they boiled, you had to be careful because they cracked - the syringes cracked, so you had to get it just right; but you always had a spare syringe.  But the needles – now they were horrendous. They were quite long, but obviously you didn‘t have to stick it right in, but you just put it in so far, just to get the insulin.  You don‘t have to find any veins or anything like that - you just find a place, probably in your leg, more a muscle or something like that, to put it into.  But you certainly used to feel it; well, I did anyway.  And I‘ve actually still got scars to this day where I did things not... where I did injections that didn‘t come out so well; probably made mistakes; did them in the - it‘s the only way you learn - did them in the wrong places.

How did you know how far to put the needle in?

Well, I think you just got used to that fact.  Actually, the farther in you put it, the more it hurt, so you just put it as far as what you dared so that the insulin went into the blood stream.  But I must say that to look at the needles, compared to what they are today, was actually horrendous.  First of all, when I first started doing it, we didn‘t have blood tests.  The only blood tests we had was at the actual hospital itself - they did the blood tests.  But we had little strips which we used to test urine with, and, of course, it wasn‘t really very accurate. You know, by the time I got... if I was going to an appointment, by the time I got up the hospital, the sugar had probably changed.  And the... I remember when we first started... when I actually first started doing blood tests - I think they‘d been done for a little while - but they actually gave me my blood testing equipment at the hospital.  And what it was, it was a round one, but it was actually spring-loaded.  So, you pulled the catch back, and you got the needle on the end of this thing that you pulled back, and when you pressed the button, my goodness, you know, it really made you jump, because you had a hole in your finger, practically, with that one, and it was absolutely awful.  But you had to do them, so you had no choice, really.  That was the only thing they had then.

(6) Now, the injector thing came later, but coming back to when you were in hospital, how long were you in there for?

I was in hospital for about five weeks, which is an absolute lifetime to me, it was, and for my children and my husband obviously, because my husband was looking after the children. And I used to have quite a few visitors coming in and out.  And one day, this lady came in that knew my husband, and I think she sort of went to see him and the children as well.  And she came to see me, and she actually slipped out that my daughter was quite poorly.  So, I said to her, I said "well, I think I‘m okay now with everything, so I think I‘m going to have to come home.  I can‘t, you know, leave her there if I know she‘s poorly and my husband‘s trying to cope with her".  And so, I actually... it was about five weeks, and they let me go home.

How much had you learnt about diabetes in those five weeks?

I‘d actually learnt quite a lot, but I must say now, this many years later, I realised it wasn‘t as much as what I thought it was; it was quite little actually.  I‘ve actually learnt a lot more over the years - picked it up myself.  And I think what it is, you learn to know your own body.  You learn to know what you can do and what you can‘t do, and it is quite a hard thing to live with.  And I think I knew it must... - that‘s why I was quite concerned - I knew it would be quite hard to live with.  And I came home, and it just was absolutely amazing.  I felt totally lost, even in my own home to begin with.  And, of course, you see, trying... what you have to do is make sure you do the injections on time, I was told, and then you have to do other tests in between.  And when you‘ve got two small children to look after as well, you‘ve got to make sure they‘re fed, and your husband - his meals, because he goes out to work, and I went out to work as well after I got settled a bit.  But I found it very hard to eat at the right times.  It was quite difficult really.

(7) What had you been told about diet while you were in hospital the first time?

I was told by... she was a dietitian, but she was also diabetic herself, and she told me to eat proper food in the proper proportions - not to bother with diabetic food.  She said "as long as you eat food, the food you need, the carbohydrates, and just eat it in proportion, you know, to the amounts they tell you to eat", she said "you can‘t go wrong".  She said "I‘m diabetic myself, and that‘s what I do".  So, I have actually never bought diabetic food ever off the shelves.

Did you have to weigh or measure the food?

No, I didn‘t have to weigh it, because I was actually on injections, so normally, if you weigh your foods, you‘re just on tablets.  But I did have to measure it in a way - you have so many scoops of potato.  As long as you have the carbohydrates, they have things that they call free food, and the free food was protein - bacon, meat, cheese etcetera, things like that - that is what they called the free food, and also salad.  And most veg is actually free; there are certain things that they do count.  But the little booklet I had measured things in ten grams of carbohydrates.  Well, I used to have to have thirty for breakfast - that was after my insulin, just…  I could have things that I wanted, but it had to be at least thirty grams of carbohydrates.  And then I‘d have twenty grams in... no, I made a mistake, sorry.  Then I had ten grams mid morning, then I‘d have thirty grams at evening meal, and then I‘d have twenty grams for supper, before I went to bed.  I also had thirty grams at lunchtime.  I didn‘t actually measure, but what it is - it‘s quite hard to explain - just say that an apple, a medium sized apple, is ten grams of carbohydrates, and a slice of bread is ten grams of carbohydrates.  A biscuit, which I have mid morning, as long as it‘s a plain biscuit - I normally have Arrowroot biscuits - and they‘re counted as five grams, each one.  And this is how I‘ve always actually done my food is by counting the carbohydrates.  This little booklet they gave me was very good, and it tells me all the things that I can actually eat and how much they‘re worth in carbohydrates.

Are you still referring to the original book you were given in 1969?

Yes, I am.  I‘ve still got the original book and I can still refer to it, but now, obviously, after all these years, I know exactly... I don‘t have to look at it, but I have got it if I need it.

Are you still counting at meals and at snack times?

Yes, I am.  I usually try to work things out for my amount I should have, because the more you do this, the better your insulin works.  And I‘m not saying that I‘ve been totally good.  I have gone off a couple of times and I have had a couple of things I shouldn‘t have, but I would be telling lies if I said I hadn‘t.

(8) Did the doctors and nurses make you feel that you must keep to this strictly?

Oh yes, they did.  They thought it was very important.  Your diet is very important, especially with insulin, because if you don‘t eat properly and you don‘t eat the right amount, the insulin will work on you, and you will have a hypo if you haven‘t had enough. But also, you can go the other way and you can be hyper, which means that you‘ve actually eaten more than you should, and the insulin hasn‘t been able to cope with it - the amount of insulin you have hasn‘t been able to cope with it because you‘ve had too much.

Have you ever adjusted the amount of insulin to what you wanted to eat, or adjusted what you wanted to eat to the amount of insulin?

No, I haven‘t actually done that. I have tried to stay strictly to what I should eat.  If I‘ve eaten over and I‘ve had sugar, no, I haven‘t adjusted it, because it does tend to throw the balance of it out, and it doesn‘t do you any good in the long run.  What I have done when I‘ve had sugar is drink loads and loads of water, which I was encouraged to do when I was in hospital.  They told me that was one thing that I could do.  But no, I don‘t believe in adjusting it to what you eat, or if you go out anywhere, I just try to stick to the same amount.  The only time I ever adjusted my insulin was if I had a very bad cold or a touch of ‘flu, something like that, because it automatically makes your insulin... no, it automatically makes your sugar go up, and so, therefore, you need the extra insulin to counteract this.  And you don‘t have to eat anything sometimes. Sometimes the sugar will go up if you‘ve got a cold, and it‘s nothing to do with your diet.  So yes, I do adjust it then.

(9) How did you cope with diabetes and two small children?

Well, I don‘t really know, but I did.  What happened was, I used to... as soon as I got sorted with my injections and everything, I had to try and work round everything and round the children, because obviously the children have to come first, even before me.  And I started to work again, and they were quite young, but I was lucky - my husband used to work nights in a factory.  And so he came home, he had the children for a few hours whilst I went out to work, and at that time, I think I was working down a café for a few hours a day.  And then I used to come back home, and then my husband would go and have a few hours sleep while I coped with the children.  And I must admit, then, I used to forget little things, like my in-between snacks.  I think that was because the children were young, and if they were demanding something, I’d tend to forget what I was supposed to be doing just for a second.  But in all the years, I think I‘ve only ever forgotten my injection about twice, and I think I was lucky.  Once I‘d remembered, it was quite late, but I was still able to do it; it wasn‘t too late to do it.  When you‘ve got very, very young children, it is difficult, I mean, because you have to be alert and watching them all the time.  Obviously you can‘t even stop to think about anything else.  And they were fairly young: one was three and the other one was just twelve months old, really.  And yes, it was very hard, but I still had to go out to work, because obviously we needed the money, so I did several jobs actually.  But as the children got a bit older, it got a little bit easier, and I started, then, to work a few more hours.  And my husband... we had to do it between us, because we hadn‘t got anybody to take care of the children.  My

(10) parents were working then; Phil‘s parents were working then.  And obviously, there wasn‘t such as thing as... there probably was childminders, but we couldn‘t afford to pay childminders, so we did it between us, the two of us.

So give me a typical day then for your husband and yourself when your children were small?

When they were quite young, I used to get up in the morning, and my husband used to come home from work after working on nights.  I used to usually get them all sorted out - get them dressed and bathed... sorry, the other way round - bathed and dressed, and fed.  And then my husband would come home from work, because I used to get up fairly early.  I‘d try and do... I‘d probably have already then done my injection, and then I used to have some breakfast, just after I‘d fed the children; given them what they should have.  And then I used to have to get myself ready to go to work, and my husband used to look after the children while I went to work.  Then I‘d come home from work, and the next thing was preparing an evening meal.  And my husband would then go to bed for a couple of hours, and I‘d be preparing the evening meal, and then obviously looking after the children in the meantime as well.  And then we‘d have our meal, and then I would put the children to bed.  My husband would get up in the meantime, he‘d usually have his meal with us, and then a bit later he used to go off to work again, and then I was there with the children again.  And when the children were in bed, I used to do my housework; I used to start doing my housework then.  And I think that was once when I experienced the first hypo I‘d had.  And I thought it was... I thought that I was perspiring, because I‘d just washed a kitchen floor.  But it wasn‘t that at all, and I suddenly realised, I thought "oh my gosh, this must be what they told me about with the insulin",

(11) and so I thought "ah, glucose or sugar".  So I made myself a cup of tea very quickly and put sugar in it, and I drank this cup of tea and realised that I‘d stopped perspiring, which was really worrying me because my clothes were getting damp and everything - I was really, really sweating up.  And I thought "ah, that‘s great.  I stopped that - that‘s brilliant". So that was just... that was probably about the first real hypo I ever had from the insulin.

What was your marriage like with so little time together and still in your early twenties?

It wasn‘t bad actually.  My husband was very good.  He used to let me go out.  If I was very lucky, I used to go out once, perhaps, in a week.  We seemed to cope rather well.  And, I think, being young, we actually grew up together, and we actually grew up with the children.  Yes, we actually grew up with our children in a way.  As we got older, they got older, and we were quite a close family.  And we didn‘t have a lot, but what we had we enjoyed; we did the best for the children we could. And I worked and my husband worked, and we did it between us - we looked after the children between us, so we‘re very lucky.  They had their parents most of the time, either me or my husband.  But we didn‘t have an awful lot of time to spend together, because he used to be working all the time, and then I had to go out to work as well.  Eventually we did have a television, which we didn‘t have when we first got married; we just had the radio, and…

(12) How did your husband cope with you having diabetes?

He coped very well.  He was quite calm about it.  If he was at all worried, he never showed it, and I think he was probably being strong for me, to make me a little bit stronger about it.  My parents were quite shocked at first.  They couldn‘t understand how I‘d come to have diabetes, and I believe they tried to trace back through the years to previous generations, and they couldn‘t find any sign of diabetes in the families, in either family.  And then a few years after I was diagnosed, my brother‘s daughter, she was only about nine I think, and she was actually diagnosed with diabetes.  And she was quite young, and she went so thin, it was terrible to see her.  They couldn‘t believe it.  So they couldn‘t trace anything, but then that was my brother, and that was his daughter.   And then now, funnily enough, my brother himself, he‘s actually been diagnosed a diabetic, but he‘s on tablets, he‘s not yet on insulin, so I think he‘s just coping like that at the moment.

Before you knew about your niece, did you wonder why you‘d got diabetes?

I did wonder why I‘d got it. I wondered why I‘d got diabetes, because I hadn‘t really heard... I had heard of it, but it wasn‘t the most prominent thing I‘d ever heard of.  I don‘t know why - I don‘t think… at that time, I don‘t think I knew anybody even diabetic, and so yes, it was strange.  I often wondered why I did.  And I did ask at the hospital, and they said it‘s not just hereditary, it could be that I‘d had a shock at some time when I was carrying the baby, and the actual shock had stopped the pancreas gland working.  So that seemed to be the explanation why I was a diabetic, but I couldn‘t remember the actual shock that I might have had.  I do recall one incident that could have been the shock.  I was just actually walking along the road one day, pushing the little boy in a pram or pushchair, and somebody - and I was pregnant with my daughter at the time - and somebody came up to me and said, you know, "how are you?" and whatever, and then they said to me "I‘m sorry, I heard about your grandmother - she died".  And I said "oh, my goodness", I said "I didn‘t know she‘d died", and I was absolutely shocked. In fact, she‘d died a couple of days before and I had no idea whatsoever, so I don‘t know if it was that or not.

(13) Did diabetes have a great effect on your life as your children were growing up.?

It did in a way, but the longer I had it, the more I was able to cope.  And when I was at work, obviously I used to carry little things around with me, because I actually realised, the more energy you burnt up, the more prone you were to having hypos.  So, I used to carry little things around with me, like biscuits in me pocket and different things like that.  And then years ago, it was like you used to carry cubes of sugar.  You didn‘t have things like you‘ve got them now, so I used to carry these little cubes of sugar.  Well at work, they got so used to me, ‘cause more often than not, working in this place I worked in - it was quite a busy kitchen, very hot and quite heavy work, really - and I‘d be running around, and then I‘d suddenly realise that I was having this hypo.  And you could actually tell, ‘cause you really started to perspire; the sweat actually dripped off you.  Well, you knew it wasn‘t normal then, and then you have this feeling, which is quite a strange feeling - you‘re there but everything‘s going further away from you.  And then you realise "oh gosh", you know, "this is a hypo", and then you just get something as quickly as you can.  But that‘s one thing I did find over the years, that the more energy I used, the more prone I was to hypos.

Have you ever been completely out with a hypo?

Fortunately not; I‘ve always been able to cope and catch it in time.  It depends on the insulin you‘re on.  Now, when I used animal insulin - that was very good, because you used to have plenty of signs before you had the hypos.  But when I changed to human insulin, which was approximately about twelve years ago, I found it wasn‘t so easy to spot the hypos, and they seemed to come up on me much more quickly than what they did when I was on the animal insulin.  But, of course, we had to get used to it.  We‘d been changed on to this other insulin, and you just had to get used to the fact, and you just got

(14) used to spotting it, and I‘ve always actually caught it in time.  I‘ve never actually passed out or anything, so I‘ve been very, very lucky.

How much contact were you having with the medical profession as your children grew up?

I was going to a diabetic clinic once every three months, four months.  If you were very, very lucky, they gave you six months.  It all depends how I was when I went up there - how my all-round sugar test blood test they did, how that was.  If that wasn‘t very good, then they‘d call you back in three months, but if you had quite a good one, they‘d let you go say four months, or sometimes I was lucky, even six months before I had to go back.

And who did you see when you went to the hospital?

I saw sometimes... well, you‘d have a nurse to begin with, and you had to take a little sample, and while she was testing that, she‘d weigh you.  And then you‘d go back and sit down, and then you saw one of the diabetic doctors, it varied.  I remember the first diabetic doctor, Mr Terry; and the next one, I think his name was Jenkins as well - but I‘m not absolutely sure about that; and now, the recent doctor now is Dr Jenkins.  But I found them to be very, very helpful; they were very good.  If your tests weren’t too good, they did show off and sort of say "well"... or if you weren‘t testing enough, they‘d say "well, you could test more than this".  Yes, sometimes if you hadn‘t been good and your test wasn‘t as good as it should be, I actually have been ticked off a few times by different doctors.  I‘ve either been told to do more blood tests, or more regular ones as they put it, because they just told you to do so many.  It used to be, I think, about two days, full days of the whole test, from morning till evening, two days a week, every couple of weeks, but, of course, when you‘ve got children and everything else, it‘s very hard to do that many tests.  And you‘d got to do them at the right time, certain times, and then when you‘re at work as well, it is very difficult.  But I used to be ticked off, and I just used to take it and say "well, I‘ll try better next time".

Are you still ticked off or did that change?

No, I‘m not ticked off, now. That‘s all changed.  Normally they‘re quite pleased with me, so I‘m quite lucky now.  And I think my last all-round blood test, that my doctor actually did, because I did have a few problems, was only eight-point-something, so I think that is quite good now.

In the seventies and eighties, when your children were growing up, and you went to the hospital, did you get the impression that the nurses were specialists in diabetes?

No, I didn‘t, not then.  I believe they are now.  But then, to me, that I never actually saw a nurse.  That the only time I saw nurses were when they did the urine test and they weighed you, and they did different things like that, but they never actually spoke to you about diabetes.

(15) So how did your health progress?

Well, unfortunately, when I was about forty four, I suddenly realised that I‘d got these problems.  My leg was paining all the time and my back, and I just shrugged it off, and thought "well, it‘s just nothing really".  Because actually, I used to go to a gym, and, by that time, because my children were quite grown up, and so I used to have a little bit more time to myself.  And I used to go to a gym about four times a week, and I used to go to work, and I‘d think "oh", you know, "it‘s nothing".  But then it just progressed and got worse and worse, until I fell down a couple of times at work.  I think the once, I was only just sweeping the floor, and I went down on the floor.  And so in the end, I had to go to my GP, and she said, well, the first thing I should give up is the gym, which broke my heart, ‘cause I loved it, I loved going to the gym.  And she put me off work, so I just carried on from there.  I stayed off work, I didn‘t go to the gym, and it just… I think it just progressed from there really.  And I went back to her several times, and I said to her, I said "look", I said "I think it‘s better now, I want to go back to work".  And she said "well, I don‘t think it is", she said, "but if you want to go back to work, you can go back to work". So, I went back to work, and consequently I found that I couldn‘t even do my job.  The girls I was working with, they were helping me lift and do certain things, and I realised myself that I shouldn’t be there really, and I shouldn’t be doing it, because I was putting other people at risk, carrying heavy things, hot things as well.  So, when I fell down again, they decided… the lady in the office rang the person that was sort of like in charge of us and explained, and I went onto the phone - I was quite upset - and he said "well, I‘m sorry", he said "you have to go home, you have to go back to the doctor, and I don‘t think you‘ll find that you‘ll be able to work, here anyway". So, that‘s what I did.  I went back to my GP,

(16) who said "well, I really expected you back, Mrs Baker" she said, "but I let you do what you wanted".  She said "you seemed to know and think you were better, but", she said, "I‘m sorry, but you‘re not", and I said "yes, I know I should have listened to you". So consequently, then, I finished worked - I was only forty four - and I was absolutely devastated.  After such a busy life, the life I lead - ‘cause diabetes has never stopped me doing anything.  I was determined it would never ever stop me doing the things I wanted, and I thought, as long as I do it right, I‘m going to be okay.  But I was really, really... I was at home and I was quite lonely, because by then my children had left home, got married and everything, and I was just suddenly in this world consisting of my husband and I and no job, and totally… well, as I say, I was just totally devastated.  But, I picked myself up again, and I thought "no, if you don‘t let diabetes stop you, you‘re not to let this stop you".  So, I started to do little things, and I drove as long as I could, then I had to stop driving, but I did drive as long as I could.  And I even went back down to the place where I worked in the kitchens to help - they had like the adult trainees, these children with learning, and adults with learning disabilities.  And whilst I was able still to drive, I went down there, and I used to sit with them, one to one, reading with them, teaching them to read and reading with them, until eventually, then, I had to give in with that, ‘cause I couldn‘t drive anymore.  And basically, as I say, after having such a busy life, I seemed just to come to a standstill. Even after my life had got very much quieter than what it normally... what it used to be, as I say, I was determined that diabetes was not going to stop me doing anything.  And I remember now, I actually learnt to swim when I was in my thirties.  I was so terrified of water, I didn‘t think I‘d ever learn to swim, but I was so determined that I went this few times to this pool, where they actually taught you how to swim.  And I remember the gentleman that taught me was about seventy years old.  And after two or three lessons, I was actually swimming a width, so I was really pleased with that, because I was so scared, I never thought I‘d ever take my feet off the bottom in water. And, of course, I learnt to drive as well, but then I couldn‘t drive any more.

(17) So, after I got this osteoarthritis, I still tried to make myself do things and try and make myself useful.  Well, my granddaughter, she used to go to the little primary school just down the road from us, and I thought "ah, they have ladies there to help, I wonder if I‘d be any help to them?". So, I went down there one day, and I said "do you need anybody to help the teachers?".  I said "well, I am disabled a bit, but I could sort of sit with them and talk to them or read with them, or do something". Anyway, they did actually let me go down there, and I did that for quite a while, even with my granddaughter’s class.  But she was never sent out to me - ‘cause I used to sort of sit outside.  And the children - I used to do one to one reading... well, testing their reading really, and it was one to one.  But she was never… she was quite disappointed, because she was never sent out to me!  But I thoroughly enjoyed it.

And how has your health progressed in retirement?

Well, I‘ve learnt one thing - diabetes doesn‘t actually like any other problems, which I‘ve got quite a few now.  I take quite a lot of tablets.  I have Thyroxine and blood pressure ones, and Frusemide I have to take.  As well as my two injections, I have Metformin twice a day with the injections as well; those are diabetic tablets. But I used to realise that - even like the time when I said I had a cold - I used to realise that diabetes used to play on that fact, and it was quite hard to get rid of a simple thing because of being diabetic.  And I find it doesn‘t help now, with these problems that I‘ve got.  So, the only thing I can say is, it‘s not so bad having diabetes on its own, which I learnt to live with and I learnt to cope with, but I find it much harder now because I have so many other things, other problems, that I find it harder to cope with.

Have you had any complications which you could specifically link to diabetes, with feet or eyes or anything?

No, I haven‘t actually; I‘ve been very fortunate.  My eyes, now, I wear glasses now, but I am now fifty seven, and I‘ve worn glasses for about three or four years.  But it‘s actually nothing to do with the diabetes - its just age, where I need them for reading. Actual walking about, I can see perfectly well.  I do have... my feet are quite numb under my toes, and I have been told that is to do with diabetes. But apart from that, I can‘t think... I don‘t think any of the other problems have come from actually being diabetic, so I have been very lucky, I think.

(18) You mentioned that you changed to human insulin over twelve years ago.  Have there been any other changes in your regime as far as your diabetes is concerned?

Yes, about three years ago, two to three years ago, I suddenly thought, I thought "well, I‘m still using these glass syringes", but the needles were a bit better ‘cause they were throwaway ones, disposable ones.  And I thought "well, I know there‘s a pen.  I think I‘ll ring up Sister Livingstone", ‘cause she was very, very good.  She‘s not there any more now, I think; I believe she went back to South Africa. But she was a lovely lady, so I rang her up, and I said to her "is there any chance of being brought into the twentieth century?", and she started to laugh.  She said "well, I should think so".  And I hadn‘t seen her for a long, long time.  She said "I‘ll tell you what", she said "I will come out and see you and we‘ll have a chat about it".  So she came; as soon as she could, she came out to see me.  And we sat, and I said "I‘d really, really like to have something a lot easier than what I‘ve got now", and she said "oh, my gosh", she said "are you still using the glass syringe?", and I said "yes", I said "I‘ve used that the whole time".  She said "oh, I never realised you were still using that", and I said "yes".  I said "I find it very difficult when I go out".  I did have like a little case, but it was quite bulky.  And she said "oh well", she said "we‘ll soon sort this out for you".  So we sat there and worked out, and she wrote out a letter for me for my GP, and she consequently gave me these pens. Well, the whole time I‘ve been diabetic, I‘ve had to use a mixture of insulin, and that, I thought, would have been a drawback when coming to have this pen, because I never realised quite how it works.  So she said "no, you don‘t have to" she said, she said "you don‘t have to mix anything". She said "what you do is, I‘ll get you the Mixtard pen", and she got me the brown one, which is a thirty one - that was for the evening, and she got me a black one, which was a fifty pen, and that was for the morning.

(19) She said "all you do", she said "you use"... she showed me how to twist the insulin... twist the numbers, so that I got the right amount of insulin, and she showed me how to use it.  And I couldn‘t believe it.  It was so simple, and I had struggled all that time and I hadn‘t bothered to even find out.  I could kick myself; I could have kicked myself for it! But it is so... I can‘t explain how easy it is now to use this pen; it‘s just so simple.  And if we go away or we go out for the day, which is not very often, but if we do, I can carry this round with ease, and it‘s just so simple to do, I couldn‘t believe it.

So did no doctor or nurse, whenever you visited the hospital, ask what you were using?

Well, no, because…  Once they said to me about this pen, but I decided myself that I wouldn‘t be able to do it, because it was like a mix... I needed a mix, and they didn‘t do one that was mixed.  So consequently, I forgot all about that - that was like years before - and never really thought about it again.  And then it just suddenly... I suddenly thought about it here that day, about three years ago, and I thought "well, I‘m gonna ring Sister Livingstone and ask her all about it".  But no, nobody had really mentioned it to me at the time. I think they just... they might have thought that I was, but I wouldn‘t have thought so, because of the actual insulin that I used.  I mean, the pen, now, is called a Mixtard pen, and they do know I‘m on that now, obviously.

Can you talk about how much contact you have with doctors and nurses and your GP now, say in a typical month?

I don‘t have a lot of contact with diabetic doctors.  I go up there, I think... they usually see me once in twelve months now, ‘cause I‘m not too bad; I‘m quite good.  My tests are not bad now, so they don‘t need to see me.  I probably have more contact with my GP, who I go periodically to see, but I think she‘s so...well, I should think she must be sick of the sight of me by now, so I don‘t go if I can help

(20) it!  But they‘re all very good.  She is very helpful, my doctor.  I must admit, she has been very, very good to me.  As I say, I go to – probably, at the moment, I go to more appointments for my other problems and not diabetes.

Have you ever had any bad experiences of the medical profession?

No, not really.  I‘ve been very lucky, because I‘ve had a couple of operations, and it‘s sort of gone quite well, really.  I think I‘ve been quite lucky; I haven‘t really had too many bad experiences, and none that actually stick out in my mind.

So can you describe what your life is like now?

My life now - it‘s okay.  I like watching the television, and I try to do crosswords and things to keep my brain active a little bit.  I have quite a bit to do with my grandchildren, which I love.  And I like reading, and I love music.  Actually, my life is quite humdrum to what it used to be, probably sounds really boring.  Well, it is sometimes; it is very boring.

How do your grandchildren react to your diabetes?

Well, that‘s a good point, that is.  My - can I just first say - my own children, as they were getting older, I suddenly realised that I used to do this injection and they‘d be stood there watching; never said anything, they just watched, didn‘t say anything.  And then, as they got a little bit older - I forget which one it was, I can‘t remember if it was my son or my daughter - but one of them did say to me "Mummy", and I said "yes?", "do all grown ups have to do injections?", and I said "oh no", I said "no".  I said "hasn‘t Mummy ever told you?".  "No.  I thought...  Will we have to do them when we get older?".  I said "no, you won‘t have to do them". I said "it‘s only people that find out they‘re diabetic mostly - some have to do injections, some don‘t".  "Oh", and that was it, I answered that question.  But I suddenly realised that they’d been watching me do it and they hadn‘t really understood.  They thought everybody, or they at least, would have to do it when they grew up.  And my grandchildren now, it‘s just matter of fact.  They‘re so used to seeing the injection, they don‘t take any notice whatsoever.

(21) How do you think your life would have been different if you hadn‘t had diabetes?

Well, as I think about it now, I don‘t think it would have been a lot different.  It‘s funny, I happened to mention up the hospital about this osteoarthritis, and I said that I‘d probably brought it on myself because I never stopped.  I used to be keeping going from morning to night, and going to this gym, and doing all sorts of things.  And the person that I spoke to up the hospital, she said "well, I don‘t think so", she said "I don‘t think you‘ve brought it on yourself at all".  She said "it‘s either there or it‘s not, and", she said, "obviously it was there with you".  And so, I think the other problems have just sort of come in later life.  I don‘t think... no, I don‘t think my life would have been a lot different, to be honest.

So what keeps you going nowadays?

Well, I think it must be my children, because they come here with my grandchildren.  And if nanny is a bit stressed, my grandchildren even say to me "chill out Nan, chill out Nan", and this is what I get.  So, I honestly think it‘s my own children and their children that actually keep you going and give me something to actually go on living for.

Would you have any message for someone who is diagnosed with diabetes now?

Yes, I would.  I would say to them - live as normal a life as you possibly can.  Take it in your stride, and just remember that it is not an illness, it is a thing you learn to live with.  And once you learn to live with it and you learn to cope with it, I, in all the years I‘ve been a diabetic, have never gone into a coma, so I think I must have been doing something properly.  Yes, I‘ve always really looked after myself.  I haven‘t been back and forward to the doctor too much, not to do with diabetes.  I‘ve always tried to actually control it myself, and I do think that‘s really important; I can‘t stress that enough.  Doctors and nurses, they can only help you so much.  Most of it you have to do yourself, and very, very importantly, you should be in control of your own life.  You shouldn‘t rely on other people: you should do it yourself, and I think that is very important.