People with Diabetes
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Person with diabetes
Born in St. Kitts in 1938.
Diagnosed Type 2 in Birmingham in 1983

Overview: Agnes` father worked in sugar cane fields in St. Kitts and her mother in the markets. Agnes worked as a maid until coming to England aged 22. She has been married twice and has five children. She controlled her diabetes with tablets, apart from a short spell on insulin while being treated for cancer. At the time of recording, she had recovered from cancer, but was about to go on insulin permanently. At 66, she still gets up at 4.30 every morning to work as a cleaning supervisor and mobile carer, and says her Christian faith sustains her.
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<A name='(1)'><b style='color: #000040; font-size: 18pt'>(1)</b></A> Tell me about your background

(1) Tell me about your background.

Dad used to work in the sugar cane field; mum used to work at home, and then she‘d do selling in the markets.  And then we used...  I came here when I was twenty two.  I came here, and the other kids, they‘re all sort of gone to different parts, you know - mostly the American countries, like St Thomas, St Martin, and all those they‘ve gone to.

Why did you all feel you needed to leave St Kitts?

Well, because we thought there‘s a better thing outside of St Kitts, because at the time, when I came here, there wasn‘t much in St Kitts apart from the sugar cane.  And then you go out and you work in people‘s home for them, you know, as maids and that, but now there‘s a lot more open up there than what was there before.

Can you describe what your father‘s life was like?  What was a typical day for him?

I don‘t know Dad always had a typical day.  He was very strict - you know, he seldom... he laughs with you sometimes, but very few laugh you get from him.  It was always Mum that we could have wrapped around our fingers, you know!

Perhaps he didn‘t laugh because he had a hard life?

I don‘t know.  I don‘t think he had such a hard life - I don‘t think so.  I think that it‘s just some people that… they think the more they get serious with children is the better the children comes out, but I don‘t find that with me and my children.  I find that we live like brothers and sister.  They know where to draw the line, but we can sit down and discuss.

Describe your own life in St Kitts.

Well, I start working as a maid in…  I was from Cayon, five miles out of Basseterre, and I start working as a maid for a lady from America.  Wasn‘t too pleased with her so I went back home, and then I stayed at home until I got the offer to come here.  My cousin sent for me, so I came up.

What was your schooling like?

Well, my schooling... I left school early, and because it‘s not like now where parents pressure you and said "you must go to school".

(2) In those time, if you said "I am not going back to school", they never used to push you to go back to school.

So how old were you when you left school?

I was about fourteen or fifteen when I left school.  But I came here, and I still didn‘t go anywhere to get an education.

What kind of education did you have until you left school?

We had what we call, what, secondary education.  We had like the low school - what you call the infant school here - and then we go up to the - we used to call it upper school, which is the higher school we go to.  It was quite enjoyable, but I think when you start following the other people that leave - just as they do here now - you know, they thought "oh, this person leaves school, so I don‘t want to go no longer".  But then if you have someone to push you and say "you have to go back", you know, but if they don‘t push you then sometimes you don‘t bother, and that‘s what happen.

What did you do in your spare time while you were at school?

I used to love running.  And we used to run and thread needles and run with egg in spoon and bottle on our head!  It was lovely then.

Did you go to church?

Yes.  I always go to Anglican Church.  That‘s one thing my grandmother, she wouldn‘t let me stay off; always had to go to church.  There was always ‘that suit’, what we call a set of clothes there ready for church, and you‘re not supposed to wear it anywhere but church.  You had to go to church.  Because I was confirmed, and I went to church… since I came up...  when I came to England, I stopped going to church for a while, and then afterwards I start going back to church.

You mentioned that your father was quite strict.  Would you say you had a happy childhood?

It was happy for then.  For those time it was happy, but for now, you know, the time now…  I wouldn‘t say it would have been happy if it was this time, but then it was happy, because it was what there, it was what going, which I think it was a lot better than what goes on now.  I think, then, it was a lot better than what goes on now, ‘cause I think the children there are not what I expected them to be,

(3) as the way we were brought up.  They‘re not...  You know, I go there several times, and the way I see their living and the carry on of them, it‘s not what I would have liked to be.

In what ways?

In all ways, all the ways - the guns, the knives, the drugs, you know, the disrespectfulness of them.  It‘s just like here - they‘re very disrespectful, you know.  It‘s just like here, now - all over I think it‘s the same.  But they deal more with American, because they have more American TV and everything down there, and just what they see goes on on the television, they think they should play a part of that and think it‘s now, which, you know, I keep saying "it‘s not the same".

Now we‘ll discover whether your diet had any part in your diabetes, but can you first tell me what your diet was in St Kitts?

Well, we use a lot of sugar cane, sugar apple, custard apple, we have breadfruit, mangoes - we have the lot.  But I didn‘t became a diabetic until I had the last child.  He was eleven pound nine ounces, and it‘s after I had him.  I went home after Mum passed away - she passed away in ‘82, I went home ‘83 - and when I came back I had to go to the hospital.  And they said to me "you are a diabetic", and I said "no", because I went to the doctor before and I took a sample of urine, and she said nothing was wrong with me.

We‘ll come to your diagnosis in a minute, but just still staying with your life in St Kitts, were there any members of your family who were diabetic?

When I was there before, as far as I know, nobody was a diabetic then.  But, and saying that, I couldn‘t just say that, because they never used to tell you what happen.  They don‘t tell you what happened to them, you know.  When my Gran and that was small… when I was small, they don‘t tell you what happened.  If you ask what happened, they always fob you off, and they usually say "you shouldn‘t ask question".  So, you wasn‘t allowed to ask any question, so I couldn‘t say whether anyone was a diabetic at that point or not, you know.  That was in the sixties,

(4) because I came here 1960, so I really didn‘t know then.  But while I was here, my mother became a diabetic, you know.  And then that was abut 1965 or ‘66 she became a diabetic, she was diagnosed, and the treatment there was so bad for diabetes.  And then she carry on until 1982 when she passed away.  I was there one time she was rushed to the hospital.  She spent three weeks in the hospital with the diabetes, and then I found out… when I went in the hospital I found out that she‘s had bad kidneys as well, you know.  But the treatment of them there, it was very appalling, and I mean appalling.  They does not understand the difference of when something like that happen - I think because it never happened to them at the time.  They think she was putting it on, you know, that nothing wrong with her, because, well, they were well, and they thought "well, nothing is wrong with her", but at the time something was wrong with her.

So, when you‘re talking about the treatment, are you talking about the medical treatment or the way other people in St Kitts treated her?

The medical treatment was a lot to be desired as well, because at one point Mum said to me that she went to the hospital, and they take something and they pierce her chest there without any anaesthetic, you know… pierce her chest without any anaesthetic.  And she says it was very cruel the way they did it, you know.  And all that was said to her, even when she took in…  I was here then.  I went home six months previous to when she passed away, and I go to the hospital with her, and that‘s when I found out she had bad kidneys, ‘cause I asked the doctor.  And my father, he hit the roof.  He said "how did you know she had bad kidneys?", and I said "because I asked the doctors", and he said to me "you go in and ask question and let they kill her off in there".  That was the attitude - that you‘re not allowed to ask any question, you know.  They still had the old time things, you know - don‘t ask question, which I think that in this day and age, you have to ask what‘s wrong, you know.  But then after I came back... before I leave, I said to her, I said "Mum", I says "I‘m going

(5) to try and come back the next year", because, I said "I can‘t bring the children again, because it costing me too much money".  And she said to me "no", she said "don‘t come back, you won‘t meet me".  And six months after we got back, she was dead.

Did you feel that her basic treatment of... was she on insulin or tablets?

She was on insulin first, and then they took her off and put her on tablets.  But I never get around to find out what was really going on, because you could hardly find anyone to speak to - you know, you can‘t ask them, they don‘t want you to ask any question.  I really don‘t understand.  That‘s why I won‘t go back to live.

So, you feel that the doctors didn‘t treat her properly, but also people in general didn‘t?

The family as well, because I think, because they does not know what it all entails, they just carry on as though nothing is wrong.  Now, a diabetic, sometimes when the sugar is up, you hasn‘t got any energy to do nothing - you just feeling as though you‘re drained, you just want to sleep or sit there.  Then, I don‘t think Mum could have got through to anyone to say how she‘s feeling, because, as I understand, that if she said she wasn‘t feeling good, my father would say "nothing wrong with you", you know.  Which I find that so appalling, because if someone said they‘re feeling ill, there‘s ways around it without telling them nothing is wrong, you know.

Do you think that this was due to ignorance of diabetes?

I think it‘s ignorance of all illness; I think it‘s all illness.  As I said, again, because they never had it, they does not seems to understand what is going on.

Was there any shame attached to being ill in St Kitts, do you think?

I think that‘s a good question.  There‘s a lot of shame attached to being ill in us, because a lot of people does not speak about their illnesses; they hide their illnesses.  Now, I‘m different.  I tell everybody what‘s wrong with me, and I don‘t want you to say "oh, I‘m sorry for you" - I don‘t want that.  I‘ll let you know that I‘m ill and what I‘m ill with.  I call all my children and I tell them what is going on with me.

It‘s perhaps important to try to understand this question of shame, because maybe many older people coming from the Caribbean to England might still feel ashamed of being ill?

I think so, because even though they‘re in... they should be more enlightened now, but I still think some people are ashamed to let people know what really happened to them.  I think even some people here, they don‘t want anyone to know what happened to them.

(6) Yeah, I‘m a mobile carer, and I‘m going to a lady who is West Indian.  And I know certain things happened to her.  I haven‘t read her notes, but I‘ve been in caring for nineteen years and I‘ve seen these things in the home where I was, so I know what is going on, but she does not know that I know what‘s happening.  And she will not speak about it.  And certain things I‘ve seen, and I keep saying to her "what is really wrong with you?", and she keeps saying "well, you know – you know".  And ‘you know‘ can‘t come to any proper meaning of ‘you know‘, because ‘you know‘ could be anything.  But I know what‘s wrong with her, you know, and I really think that she‘s ashamed to tell me what is wrong.

Have you any idea why people would be ashamed?

I don‘t know.  Well, in the old time age, when I was coming up, you‘d have...  Some West Indian are very fiery - you know what I mean by fiery?  They‘re very mouth, and if some people know that something is wrong with you and you get in an argument, they probably throw it at you, and I think that where it stem from.  They wouldn‘t let you know, just in case you have any falling out and you start throwing it at them, so they‘d rather hide what happened to them.  And deep down, I think that take a lot of us - shame take a lot of us, because we will not speak about what happened.  So, we cannot get any advice from anyone, because we will not let people know what is going on.

(7) Now let‘s move on to your leaving St Kitts and coming to England.

I leave St Kitts on the seventeenth of August; I got here the second of September.

Which year?

1960.  And when I was coming through on the train, I was saying "look, a lot of factory", because we don‘t have chimneys on houses back home; only the factory that we have chimneys.  And I thought all where chimney is, smoke coming out, I thought it was factory to work in - I didn‘t know it was houses.  And then when I came, I was in Northampton for a while.  I got a job in a Chinese laundry, and I didn‘t like that.  Anyway, I had an aunt over here, who passed away lately with diabetes, and I came over to her in Birmingham, then I start my life from then.  I started working in a factory up Five Ways, and then afterwards I moved down to Highgate working in a factory - used to be spraying these brass knob what we used to call gold, and then afterwards, then I had Delroy.

Well, you haven‘t mentioned getting married yet, so tell me about that.

I got married - by the way, this is my second marriage.  I got married the first time, and my husband wasn‘t really up to it.  I have two children, Delroy and Ashley.  And he start playing the field, so I couldn‘t take it and I got divorced from him.  Then I got married to this gentleman, and I have three children with this one.

Were both marriages in this country?

Yeah.  Both of them are here, and I leave... I went into Selly Oak Hospital to work as a cleaner, and while I was there I met a lady who had a nursing home and asked me if I would like to work for her for three nights.  But her rate of pay was eleven hours for eighteen pounds a night, and I thought that was a little slavery.  So, I said "anyway, I wanted to get into nursing", but because I had the earliest child and I wouldn‘t give him out to be minded, then I didn‘t get into nursing, because nursing wasn‘t as nice as what it is now with the hours.  So, then, I said to her "I would work for you one night a week",

(8) which is every Saturday night I used to work there - work with my clothes, and Sunday morning I‘d change and go to church.  And then I stayed there for thirteen and a half years, I worked for her, and afterwards I thought "oh, I‘ll go out more in the field", so then I became mobile carer, for which I enjoy very much.  I‘m sorry my time is running out, but I enjoy it very much, you know.  And I still had the children.   I used to take Gary up with me at nights and put him on two chairs to sleep while I go to work, ‘cause I won‘t leave him in the house on his own, because, at that time, the others was going out, and I won‘t leave him on his own.  And that‘s how I carry on my life.  I‘m always at work.

How did you find England when you first came here?

Oh, I loved it.  England is a nice place.  I have nothing bad to say about... even now, it‘s a nice place, it‘s a lovely place.  It‘s not the country, it‘s the people.

How did people treat you when you first arrived?

I think they had more time for you - you could have ask English person a question.  And they‘ve had their little ways, I must said, as all of us do - everybody has got their ways.  They has had their little ways of us being on their territory, and I didn‘t against that at all, because some thought "oh, they‘ve come to take over", so I wasn‘t against that.  But they were nice, you could ask them a question, and if you have any problem - I know I had problems - and I could have asked an English person, and I could go and relate to them, and they would help me.

Did you meet any racism?

Yes.  Yes, I met some, and I dealt with it in my way.  I dealt with it, ‘cause I always said to them, I said "now, you want me out of your country, take your people out of my country", and that‘s what I usually said to them!  You know, sometimes I heard people talking, and I don‘t answer.  I would… "carry on with your conversation.  As much racist remark as you want to pass, you pass", and I looked at you, and I said "are you speaking to me?", "oh, no, no, no - I‘m not speaking to you", and I know very well they are speaking to me or about me, but I just ignore it; just ignore it.

(9) Can you tell me how you met both your husbands?

Well, I met one up here, chatting and laughing away - I met the two of them up here, really - chatting and laughing away; that was the first one.  And we got in very good, we got on good and that.  And then it‘s when we got married that he start playing the fields, bring the woman to the house, which I was going to… but I leave it alone.  And I thought the best way to do it is - one day the eldest son said to me "Mum, is Daddy ever going to come home?", and I thought "if my son, younger than I am, notice that, so should I" - so I went and summons him for a separation.  I thought "if he noticed that Daddy‘s never home hardly, why am I sitting there pretending?", you know, and then I went and summons him for separation and got rid of him.

And where did you meet him?

We went to a party.

And where did you meet your second husband?

Well, my second husband, I know him from the West Indies - I know both of them in the West Indies.  I know him from the West Indies, because his grandmother was my godmother, but we never get close until we come up to England.  That was at a wedding reception, I met this one.  We got close during a wedding reception.

And now tell me how you came to be diagnosed with diabetes.

I start getting very thirsty, and what I was doing wrong is to put the orange squash in the freezer, and I take it up on the bedside at night.  And in the night I was drinking the orange squash, and it‘s sweet, not thinking of being a diabetic.  And then I start having the itching below, so I went...  I was working at Selly Oak at that point, and I had a word with one of the sister.  And she said to me "have you test your urine for diabetes?", and I said "yes, I took the urine to the doctor and she said nothing was wrong".  So, she said

(10) "go back to your doctor and ask her for a blood test", but I didn‘t go back to the doctor.  I went to the West Indies, and when I came back I had an appointment to go for a D and C at Selly Oak hospital.  And that‘s why, when they says "are you a diabetic?" and I said "no", and the nurse said to me, she said "yes, you are a diabetic".  And then they start treating me for diabetes.

But you‘d managed without that treatment for how long?

I was going for about… it was about six or seven months I was carrying on with this problem, without knowing anything about diabetes, you know.  ‘Cause although Mum was a diabetic, I didn‘t know the symptoms of it - when you come a diabetic, before you become a diabetic wholly - because they say you get on the borderline or something before you come straight.  But I didn‘t know what happened, really, so as much as I was here, I was still sort of a fool to it, you know, until I went to the hospital and found out.

What did the hospital do?

They put me over to Mr Page and they gave me half a tablet.  First they put me on a diet, which worked very well, because the children keep me away from the kitchen.  I allowed to go in the kitchen and cook, but after I finish that, anything else I want the children would give me, so that I don‘t take too much.  And I lose quite a bit of weight.  And when I went back up in the January - that was about October, November - and when I go back up in the January they was very pleased, because I lost the weight, you know, because I used to be thirteen stone.  And after I lost the weight, they put me on a half of a tablet, and then that wasn‘t working very well, so they put me on a whole, until now.  I‘m taking two, three, four diabetic tablets in the morning, and I‘m taking two at dinner time, and three in the nights now.  But now it‘s time

(11) for me… Mr Page wanted to put me on insulin about twelve months ago, but when I get up in the morning after an overnight starve, my sugar level was five points and four points.  So, I said to the nurses at the diabetic clinic, I said "I don‘t think I‘m ready to go on insulin yet".  I said "when I see the sugar level getting high, I would come and put myself on the insulin", for which I‘m doing now.  I had an appointment last week to start the insulin, but they said they didn‘t have enough nurses, so they cancel, and then I‘ve got one for Wednesday to start going on insulin.  I was on insulin before, and I don‘t know whether I was taking the insulin wrongly, at the wrong time, or what I was doing, but it didn‘t seem to work as good as the tablet.  So, they took me off, but then they said they had to keep me on it, because my sugar level was going up twenty eight point and thirty because of the cancer treatment, so they took me off the insulin and I go back on to tablet.

When were you having insulin while you were on cancer treatment?

This was 1997 and… ‘97 November to ‘98 February I was on the insulin, and then they took me off it then and put me back.

(12) Can you tell me a little more about your cancer treatment and why you were put on insulin then?

Well, apparently, after I developed the cancer - and by the way, that again, it‘s... if I was ashamed and scared, I think I might have gone with the cancer, you know.  But I found a lump came under my right arm, and there was no pain in the lump, and I keep telling people.  I said it to the doctors, I said it to different people in the medical profession, and I said it to people outside - "I‘ve got a lump under my arm", and they said "is it hurting?", and I said "no".  And a lot said to me "that‘s the one you have to worry about - when you have a lump and not hurting".  So, my daughter keep saying "will you go to the doctor Mummy?  Go to the doctor", and I said "why should I run to the doctor with a little lump in my arm when I see so many children in the children hospital lying there, so much things wrong with them?", you know.  But then I went to diabetic clinic, and when I go to see the nurse, she weren‘t there as yet and the doctor was there, so I went to see her.  And when I explain and she looked, she said "why didn‘t you come to me before?".  And I explained, and told her about the little children, you know.  I said "why should I take your time up when there‘s so many people out there need it more than I do?".  And she said to me "I‘m going to make an appointment for you", so she made me appointment at Selly Oak.  They had me in after the August bank holiday, and then the doctor there, he said to me "I want to see you at the Queen Elizabeth Hospital on Monday".  I went to see him on the Wednesday - the Monday I went in the hospital.  They operated on the Tuesday and they removed the lump, and the first thing I ask him when I came around, I said to him "did you remove all of it?", and he said "no".  He said "if I had remove all of it, you probably would have end up cannot use your hand", so, he said "I got a friend up Selly Oak that could treat you".  But when I go back to him, they keep telling me to come back, and they keep telling me they don‘t know what‘s wrong, and I had to ask him.  I said "what was that lump?".  I said "was it cancer?", and he said to me

(13) "yes, the lump is cancerous".  And this is my little brave part now of it - I said "in that case, how long have I got to live?", and he said to me "all cancers are dangerous, and I know people who have what you have, and they get well".  I said "but you‘re not going to tell me that I would get well in case my family want to sue you", you know, and he laughed.  Then the Macmillan nurse said "I know all cancers are dangerous".  I said "I know that, but how bad is my cancer?".  I wasn‘t interested in the others, it‘s just mine I want to know - "how bad is mine?".  So, he assured me that Mr Collin would look after me, and I go to them and I had the chemotherapy.  He said to me my hair would come off, which it did, the first lot of treatment, take all my hair off my head.  They gave me a lovely wig, and I wear my wig with pride, and I have never been ashamed to tell anyone I had cancer.  And I think that‘s one that pulled me through, by not being ashamed.  So, all the people out there who is ashamed to let people know they are ill, they want to wake up.  Stop hiding - you cannot hide from what you have.  Let people know and you‘ll probably be able to get help, but if you hide, you‘re not going to get any help, ‘cause by time you let someone know, it‘s too late.  And I think a lot of these cancer sufferers that the cancer really take, it‘s because they‘re ashamed.  They don‘t want anyone to know what wrong with them.  ‘Cause my husband couldn‘t take it - he couldn‘t take it.  My children was the one that was my support - husband wasn‘t.  Because I said to him "can‘t you go to the hospital with me when I‘m having a treatment?", and he said "no", and he didn‘t go.  And the children -the boy and the girl, Ashley and Lavinia - they go to the hospital with me.  Each time I was going up, they goes with me.

Why do you think your husband wouldn‘t go?

I don‘t know.  I don‘t know whether he‘s frightened to hear about cancer or what.  But what I asked all of them, I said to them "the way I am dealing with it, I would like you to deal with it the same way.  No pity - don‘t pity me, don‘t humour me.  Treat me as Agnes, just treat me as the Agnes that you know.  Laugh with me", because the main thing, and I thank God for, I wasn‘t in any pain, so I didn‘t have time to be miserable because of pain.

(14) Why did they put you on to insulin when you had cancer in 1997?

Because, as I understood them, that the treatment that I was having for the cancer.  That‘s why the sugar level was going up so high, because of the treatment, so they put me on the insulin.

How did you find changing from tablets to insulin?

Not bad, ‘cause I gave myself the insulin.

What training did you get?

I went up to the clinic, and I spent three quarter day up there.  And they showed me how to use the pen, and I got this stuff from the chemist, come back, put it in the fridge, and I just give myself the insulin.  But at that point, I think why the insulin wasn‘t working is because I probably was taking it at the wrong times.  I used to take the insulin half past four in the morning - early morning - because I get up and I go to work.  And I eat and then I take it, so probably it was a bit too early to take it, so it wasn‘t corresponding with the other lot of insulin, you know.  But I‘ve got more sense towards it now, so hopefully that it would work this time.

Did you find it difficult to inject yourself?

No.  I inject myself in my tummy, my leg, my arm - didn‘t find it difficult.  It‘s something that you have to do, and if you have to do something, you just get the courage and you do it.

Can you tell me about how you‘ve tested your sugars over the years, ever since you got diabetes?

At one point I tested my sugar until my fingers was all sore, infected - I had to go and get antibiotics for them - because they was trying to get me to test the sugar all point of the day, to find out which level it‘s more high or when it‘s low.  But then, after I go back up to the hospital and explain to the nurse, she said "don‘t do that".  She said "do it twice per week", for which I does it Wednesday and Sundays - the same time as when I‘ve got my... I change my hormone patches, because I‘ve got to have hormone patches as well - I test the sugar.  I tested early morning after the overnight starve, and then I tested it before I have breakfast, and a couple of hours after - I usually work with my needle in the car - and I pull up and I test my sugar level.  So, if you hear they arrested me, you know what it‘s for.  I test my sugar level in the car, see what it is.  And then I tested before lunch, and two hours after lunch I‘m supposed to test it again, and then I tested at night before I go to bed to see what I get.  But I only do it two days a week now.

(15) Has the equipment you‘ve used for testing changed since you first had diabetes?

Well, mine changed because it got smashed up, so have to had a new machine.  And just use the machine, the needle and the strips.  But they have some nice easy ones now that you don‘t really find really hard.  The pin - it‘s the pin that we use to prick your fingers with, and then you just put the blood on the stick and the stick in the machine, and the reading comes up to tell you what it is.  But now, I think it‘s going a bit high, because in the mornings I‘ve got a eight point reading, which to me, I think that should be in the day or more in the night; not after a overnight starve.  That‘s why I‘m going back on the insulin, hoping it would come down to the level of what I think it should be.

Have people suggested you should go on insulin before - I‘m not talking now about the cancer episode, but since then?

Yes, since then, Mr Page was on to me, over twelve months now, to go back on the insulin.  And I said to him I wasn‘t ready, but then I said "when I think that I‘m not doing well on the tablet, I would be coming in", and I did that.  I rang up, and I says "I think my sugar level is getting a bit higher than what I could control on the tablets, and I would like to go on the insulin now".  And the nurse said to me "you‘ll have to go back to your doctor and let your doctor refer you to go on the insulin", and I said "don‘t people ever keep promises?".  I said "I promise that if I think I cannot control the sugar level any time I would ring up and go on the insulin", I says "and that is what I‘m doing now.  I think that the sugar level is getting out of my control on the tablets and I would like to go on the insulin".  So, she said "leave it with me and I would get to the doctor and get back to you".  And she rang me back the next day and said "we make an appointment for you to go on the insulin".

How have you found doctors and nurses since you were diagnosed with diabetes?

I find them quite nice; they‘re quite nice.  I get to know a lot about what I didn‘t know before, and if

(16) you‘re not too embarrass and ask question, there‘s quite a few doctors and nurses who would explain to you what is going on with your body, which I find nice.

Would they always have done that, even back in 1983?

I don‘t know, because I didn‘t know so much then about the body, so I didn‘t tend to ask too much question.  But now, as I get older and I learn more, I am not afraid to ask the questions.

Any differences in the way doctors treat you compared with nurses?

I think some the nurses, they doesn‘t know as much as the doctor.  So, if you ask the doctor straightforward question, and you just said to doctors "please tell me the truth.  It‘s my body and I would like to know what is going on with my body", and they would tell you.  They respect your wishes, some of them.

Have you had any diabetes specialist nurses?

That‘s where I‘m going now, up to the diabetes nurses.  They are the one that‘s going to take me through the insulin again.

Now, let‘s talk about your diet through your life.  You talked a little about the food you had in St Kitts.  What would your typical meals have been like in this country, before you were diagnosed with diabetes?

Oh, anything - English meal, West Indian meal; I eat anything up till now.  I eat my yam, my sweet potato, my dasheen, my breadfruit, I eat the rice, Irish potatoes - what we call Irish potatoes, English potatoes - and I eat the lot.  I eat plenty of vegetables; plenty of it I eat.  But I eat a mixture of all meals.

When you were first diagnosed with diabetes, in what ways did they say you should change your diet?

It‘s not stopping me from eating anything, it‘s only the amount - that‘s all, the amount.  And that‘s what had me going, because I tends to eat a little bit too much.  But as long as I eat sensible amount of everything,

(17) I can eat anything.  I only allowed to eat two ounces of meat, two ounces of fish, which isn‘t a lot, but that‘s what they said I should have for one meal.  If I have an egg, I only supposed to have an egg - not have an egg and have something else with it.

And is this what you were told when you were first diagnosed?

Yes, about cutting down on the meals; that‘s what I was told.

Did you find this difficult?

I found it difficult to a certain point, because even now, I cut the meals down now, and I find that sometimes after finish eating, I am still hungry, so I would then have either a yoghurt, I have a cup of tea or something to stop me being hunger.  As long as I don‘t have that hunger feeling, then I‘m all right.

Did your family have to change their diet with you?

No, I leave them to eat what they want.  I mostly cook on my own, because I don‘t think it‘s fair to deprive them of what they want at the moment.  Because I‘m ill, I don‘t think I should push my illness on to them, because that‘s what I think it is.  If I cut the meals out because I can‘t have it, I think it‘s wrong.  So, I‘d rather cook just a little bit for myself, because then I don‘t have to add any salt into my meals, which I steam most of my food.  I steam the Irish potato, I steam my cabbage, my carrots.  I cook it without water, so really I does not need the salt and I does not need the fat in it, because the water is not in it to take the goodness out of it.  Whatever water is there is the water that come from the vegetable itself, so I don‘t need any salt.

(18) Did any medical staff suggest that you might alter the amount of insulin depending on what you‘re eating?

No, they haven‘t.  And even if they did, I would not take up that challenge, because it means that if you start altering your insulin, you are going to spoil everything because you‘re going to eat more, and then you‘re going to think "oh, I could take another couple of units to counteract what I eat".  So, I would rather stay with just a little, and get my stomach educate to that amount that I don‘t get hungry, instead of messing around with the insulin.

How much exercise have you had during your life?

A lot of it.  I‘ve had a lot of exercise, because in St Kitts, when I was there, you know, I didn‘t have any car to run up and down in.  I had to take the shopping without a car or any bus or anything, ‘cause where we was living, I had to go up this hill where we was living.  And I had to go and do the shopping - from I was nine years old I took over, and I had to do everything because I was the eldest one.  And I had to do everything - I have to cook, have to go to school, come back, cook, wash, iron.  And you have to iron properly else they‘d throw it on the ground and they‘d stamp on it, and you had to get it, wash again and iron it.

Who‘s they - your mother?

Mother, father, grandmother - they was very, very severe and very rough, but I sorry they didn’t do a little bit more of that.  I don‘t think I would get this far if I didn‘t have that kind of treatment.

And how much exercise have you had in England?

My exercise in England - I had to mop, I had to come from town with a bag on my shoulder, a trolley behind me, and I did a lot of sewing, so I used to have a black bin liner full of material and all.  Two o‘clock and three o‘clock in the morning I used to be in here sewing still, before I go to sleep.  And back up at five o‘clock, and had to walk because I didn‘t have a car.  Husband had a car, but he was always busy, so I had to walk and catch the bus.

How much exercise to you get now?

Now, the most exercise I get now is running out of the houses, one house to the other, depending where the car park.  I try to park as far as I can from the houses so that I can have that bit of walk, because sitting down in the car, you just sort of get lazy.  But I... I‘m a cleaning supervisor still, as long as the mobile carer, so I‘m out of the house four thirty in the morning.  Six mornings a week I‘m out four thirty.

So, describe a typical day in your life, including taking your tablets and your meals.  What happens from four thirty in the morning onwards?

Four thirty in the morning, I don‘t have anything.  Now, I used to have my cereal before, but I stop it to try and see if I could get the diabetes regulate better.  So, my first thing in the morning, I have a drink at work.  You know these vending machines?  I‘ll have a cup of coffee from there - about six o‘clock in the morning I‘ll have a cup of coffee.  And then I get home about half six, quarter to seven I got back home, and I‘ll have my breakfast, then I have my tablets with my breakfast.  Then I go off to work again, and I have something at ten o‘clock or half past ten - I work with things in the car.

Is this cleaning work still?

No, this is the caring.  I got back home about six o‘clock, quarter past... half past six, quarter to seven in the morning.  Then, after my breakfast, I go out to the caring, and I take something with me.  Just a minute...

(19) After that interruption, let‘s just continue with a typical day in your life.  You‘re just beginning to do your caring work.

Yes, so I carry on with my caring, and I have things in the car to eat and drink; I‘ve got my water and that in the car.  And I carry on working from seven thirty in the morning till some days I finish at one o‘clock, two o‘clock.  I got home, have my dinner, and I always make sure I have a sleep.  And then some evenings I go back out to work.  I go back out - on Wednesday, Friday, Saturday and Sunday evening I go back out to do caring as well.  Monday Tuesday and Thursday I have the evening off.  Then I‘m back round to the same thing the next week.

And how well does your work fit in with your diabetes?

Well, it fits in all right at the moment, because I haven‘t had any let down so far.  I only ever remember I had one hypo, and I got up the morning and I find myself like I was floating around, and at that point I wasn‘t told what to do, but I ate some cereal.  And after I finished the cereal, within about half an hour, I felt all right again, so I said "yes, that done the trick".  And then I start knowing the difference of the high sugar and the low sugar, you know.  Once you know the difference of them then you can sort of adjust yourself.  The high sugar, I keep drinking a lot of water when I have the high sugar.  But the low sugar I have to eat something; has to bring the sugar back up if it‘s too low.

And you always have warnings?

Yes, but it‘s only if you take notice of the warnings, but some people they don‘t.  Because my warning, if I‘m driving around and I get hungry, it give me a first really sharp hunger pain in my stomach, and if I don‘t take any notice, I shake.  So, therefore, as soon as I get that hunger pain, I have something in the car that I put in my

(20) mouth and start nibble on.  As long as I don‘t have the hunger pain, I‘m all right.

How much contact do you have with the medical profession?

Oh, well, I don‘t have any now, so far… but I used... You mean going to...?

The GP or the hospital?

Well, I don‘t really go to the GP unless something is wrong, or unless I have to go to diabetic clinic, then.  But my repeat prescription is the most that I usually worry her about, you know.  But as for illness... oh, and if I have a cold, I don‘t let it settle in me, because I know it going to do harm - going to send the sugar up.  So, as soon as I have a cold for a couple of days and I find that it‘s not going, then I go to her and get something to remove the cold out my system.

How often do you go to hospital?

I go to the hospital… up until three weeks ago I was going to the hospital three or four times per year, because I was going in twice a year for the diabetes, once a year for my eye, because I‘ve had laser treatment in my left eye. I go once a year to check my eyes, twice for diabetes, and I was going twice a year for the cancer check-up, but fortunately I‘ve just had the all-clear from the cancer check, so thank the Lord I don‘t have to go back for that now, unless I find something else again.

You‘ve mentioned that you‘ve had laser treatment.  Have you had any other complications as a result of diabetes?

Not as far as I know.  They said my kidneys are all right, my legs I don‘t have any problem, it‘s just the laser treatment that I had.  And I ask if I‘m having glaucoma - they said "no, not at the moment", so seem as though everything is working all right.

Blood pressure?

No, I haven‘t got blood pressure, but my old man has blood pressure.

Have any other members of your family developed diabetes over the years?

Lots of them.  I‘ve got one, two, three - three cousins, as far as I know, with diabetes.  I‘ve got... my brother is a diabetic - he‘s on insulin.  My three sisters - they‘re diabetics.  I know that two is on tablets; I don‘t know if the other one, whether she‘s on insulin or tablet... no, she‘s on tablets, but I don‘t know if the one in St Thomas, Ismay, I don‘t know if she‘s on insulin or tablet, but I know she develop diabetes lately.

Have any members of your family developed diabetes as children?

Not as far as I recall.  They could do, but I haven‘t heard, you know.

(21) He, the husband, is a diabetic now as well, and he‘s got very high blood pressure.  He‘s had the blood pressure before he developed the diabetes.

Have you been able to give him much advice from your experience of being a diabetic?

Well, I could, but he don‘t take it.  He‘s a man - he doesn‘t take it.  He would take it from the doctor, and then he would say…  But it‘s funny: his diabetes - he eats anything and his sugar stay low, you know, his sugar drop very quickly.  Mine goes up - his come down, so think it‘s two type, isn‘t it?  Mine is diabetes mellitus, something like that.  I don‘t know what his is.  But he‘s on tablet as well.

What advice would you give to somebody who was newly diagnosed at the age you were diagnosed - in your forties?

Well, the advice is just to follow the instruction of what they said, and just watch your body.  If you know your body in any illness you have, and you know your body, I think you will overcome it, but you must know your body.  You know what your body can take, you know how much you can put in it and how much you can take out of it.  Because when I come in, and if I had a hard day at work and I come in and I tired, I‘m not doing anything.  I‘m sorry, I‘m not doing anything.  I‘ll sit down and I‘ll have my rest, and when I feel better I‘ll get up and do something.  But I‘m not coming in and rush myself around, all because I have to do this, and I am not doing it.  My body only can take so much.

How would your life have been different if you hadn‘t had diabetes?

I don‘t know, you know.  I probably would have put my mouth on a bit more eating, you know, I probably would eat more, but I think that‘s really the only thing, because I haven‘t let it hold me back.  It doesn‘t hold me back - neither the diabetes nor the cancer.  I worked - you know, I don‘t stay at home because "oh, I‘m a diabetic - oh I‘ve had cancer and I can‘t go to work".  I work in the morning, I take my cancer treatment in the afternoon, I go back to work the next morning.

How did your family and friends react when you were first diagnosed with diabetes?

Oh, the family, the children were very supportive.  "Keep out the kitchen", "you can only have this".  "Oh, could I have something to eat?", and they bring me the smallest portion - "you heard, you‘re on a diet, you can‘t have no more".  They‘re very supportive, and I think that‘s what make me lose the amount of weight that I‘ve lost, you know.  But they said if you have a big baby you became a diabetic after, don‘t they?  So, I don‘t know how true that is, but the last child, he was eleven stone nine ounces... eleven pounds - sorry - nine ounces, and it‘s after him that I developed the diabetes.

How soon after?

About… let me see when I went to the West Indies.  He was born in ‘79, and I went to the West Indies in ‘83, so it‘s about, what, four years after.

(22) How do you imagine your future with diabetes?

Well, hopefully it will go all right if I can keep to what I‘ve been told to do.  And I think if I can keep the sugar down, I would have a good future with it still.

You‘re sixty six years old now.  Are you ever going to retire?

Yes, I think at some point.  But I was hoping to retire back in the West Indies, but after I developed the cancer, I thought, well, I have to leave that alone, I‘m not going to retire there.  But I would like to go for as many holidays as I can.  And I will retire, but at the moment, when I look at the people that I‘m looking after and I see how they gone down, and I‘m sure three parts of it it‘s because of early retirement that they gave up.  They don‘t have to go, so they just sit down, and their body just seems to be wasting away.  And I have no intention of letting mine go that way, so I intend to carry on work as long as I can, but I will have to retire some day.

And what keeps you going in life?

I think my main thing that have me going now is when I look at people and see that what I have, some hasn‘t got it - that is, I am able to walk out there, and some are in their bed.  If I don‘t go there, they cannot move, they cannot change themselves, they cannot wash themselves.  So, I think I‘ve got a lot to give out there still, and that‘s what keeping me out there - I‘ve got a lot to give.  I‘ve got some ninety eight, ninety nine year old clients that I look after, and they‘re trying their best.  Why should I give up at sixty six?  Also, I think a lot of people don‘t believe that there‘s a god, there is nobody helping them, but that‘s where my strength comes in.  I believe dearly that there‘s someone out there looking after me.  And I hope that a lot of people would put their faith in Christ and they would be helped as well, because we cannot do it on our own; we need help from somewhere.


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