People with Diabetes
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Person with diabetes
Born in Uganda in 1954.
Diagnosed Type 1 in Uganda in 1965

Overview: Bena was born in the Kigezi District of Uganda, the daughter of a wealthy businessman. She was diagnosed when nearly 12 and then shunned by children who thought diabetes was contagious. She lived on chapattis and spinach and a bitter vegetable juice thought to cure diabetes. When Idi Amin expelled Ugandan Asians in 1972, her family came to England, and she was delighted to be allowed to eat a wider range of food. She eventually married an Englishman and had two daughters. She works as an office administrator, in a social services department that supports disabled children.

There are also interviews with Bena`s daughter, Emma and her husband, Terry.
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<A name='(1)'><b style='color: #000040; font-size: 18pt'>(1)</b></A> Hi, I was born in Uganda called a small village Kigezi District

(1) Hi, I was born in Uganda called a small village Kigezi District.  I was born in January 1954.

Tell me about your parents.

My dad was born in India, a small town called Chapur.  My mum was born in Africa.  My grandmother was born in India, she grew up in Africa.  My mum was born in Africa, then my mum got married to my dad, they were well off which my mum and dad have to work very hard.

How did they earn a living?

They had a manufacturing business.  My dad had a tea plantation as well and Kilimanzaro, it was a mine, so he owned part of that as well and that‘s how they both worked hard and became rich.

And what kind of schooling did you have?

I went to, it was called Kabale Primary School, then I went to Kabale High School, called Kigezi High School.  I didn‘t go to boarding school because that was in Kampala, because I was diagnosed diabetes at the time and there was nobody to care or didn‘t know how to care my own health so I didn‘t go to secondary school.  I had teachers who would come at home and teach me, I mean I had education at home part of my life.

How old were you when you were diagnosed?

I was nearly twelve.  I was diagnosed on, this is just approximate date, it was two weeks before Christmas so I just made it up, 18th December 1965, to make it easy for me, but it was a nightmare when I was diagnosed because didn‘t know anything about it.  I think probably most diabetics have that symptom, I used to get leg ache, pains in my legs and my legs used to itch a little bit.  I used to feel thirsty, I used to drink gallons and gallons of water, I kept losing weight but the doctors didn‘t

(2) know why I was losing weight.  The only sample was asked to take a motion test, motion sample sorry, and then my mum mentioned that she‘s losing lot of weight, eating too much sweet things, drinking sweet drinks as well as water, and the doctors didn‘t have enough knowledge what to do so they did urine sample.  But at the time it was different because the doctor came in a neighbourhood to visit a neighbour‘s daughter so we called the doctor and asked him if he could do anything.  So he start doing urine test but still didn‘t believe, but I think he had an inclination that there is something wrong but couldn‘t believe it was diabetes.  So he kept testing my urine using different glasses because he kept saying that this glass is not clean, none of the glasses were clean according to him, and then he rang, don‘t know where he rang, probably UK or Germany, I don‘t know, to clarify that if a young child would get diabetes, and they confirmed that they would.  But in Africa we didn‘t have ambulance service like UK or any other European country and my dad‘s car wasn‘t at home. Somebody had borrowed his car for wedding purpose, so my dad mentioned that he would have to borrow somebody‘s car and the doctor says no time for that you just have to go in the doctor‘s car.  Then when we reached half way to the hospital, I felt bit sick and my dad mentioned that “my daughter feels bit sick, we have to stop because she‘ll make a mess in your car” and he say that “there‘s no time for that, we just have to rush her to the hospital but”, he says, “I‘ll tell you one thing, if your daughter‘s going to be sick and vomit in the car, that‘s the end of her life”.   And then fortunately I wasn‘t sick so I‘m here to tell the tale and was rushed to the hospital, did more tests, I was put on insulin.  But before that I was unconscious, gave me some insulin, I came round, it must be about midnight,

(3) and then I was given cup of tea, which was without sugar, and I didn‘t realise at all.  And he just told me that I have to have bread, a piece of toast or something like that, and fortunately we had a bakery next door and my dad just went and woke him up, got loaf of bread and made some toast, and I had some toast from that.

The bakery was next door to the hospital?

No, our neighbour who had a bakery, so he was just next door to us.

I got a bit confused then because I thought you‘d got to the hospital by then, so when were you told you had to have bread?

Sorry, the bakery, he was our neighbour - that‘s what I meant.  We didn‘t have any food at the hospital, there was no beverages, nothing was provided from the hospital.  So my uncle, he came in his car to the hospital, then my dad drove home and knocked at next door who was a bakers, there was a bakery, he knocked the door there and purchased loaf of bread.  But at that time, the next door, he told my dad he doesn‘t want any money because it‘s an emergency.  Then my dad brought some bread to the hospital.

(4) Can you explain, as far as you can remember, what kind of doctor you first went to see when you first started having symptoms?

It was our own GP, but we have to pay to go and see our GP as well.  Every visit we made we would receive a bill and we have to pay for the treatment, or even a visit to the GP we have to pay.  And the GP was Indian doctor, I can‘t remember his name now, it‘s been long time, but the doctor who diagnosed me as diabetes was English doctor, I can‘t remember his name.

And that was the one who was visiting nearby?

Nearby, yes. 

Had he never come across a child with diabetes before?

No, he hadn’t.  I think he had an inclination that kids could get diabetes but wasn‘t positive, because he had not heard that young kids would get diabetes, so I think he telephoned UK or Germany or one of the European countries and clarified if young child would get diabetes.  Then when he got his reply, yes, and then he diagnosed me as diabetes.

When you came round from your coma in the hospital, did the doctors and nurses there seem to know about diabetes?

I think the doctors and nurses didn‘t have enough knowledge and experience how to deal with diabetes.  They were bit shocked, but I was given some insulin so I think… they had very little knowledge of diabetes.  So I was put on four injections a day.  The insulin was, I think it was isophane, and the other one, I can‘t really remember what it was.

Can you remember what the early injections were like?

The early injections were stainless steel syringes and big needles, which I had to sterilise every day.  And the urine, when you do urine test it was five drops of urine and ten drops of water, and you put this tablet in and it‘s like fizzy thing and it changes the colour, and you have to…  But before that the urine sample was different, you had to burn it

(5) on top of a, I think it was like a candle or a lamp.  You had to burn on that and it changes the colour, so it was very difficult compared to now.

Can you remember what kind of training you got to cope with diabetes in the hospital?

I didn‘t have any training.  My mum was given very limited training how to inject and how to do the urine test - that was it.  The knowledge of diet was very different as well, because I wasn‘t allowed to eat anything, no carbohydrate, like no potatoes.  I was allowed to eat bread and chapattis, and no rice, no apples - only one slice of apple, one slice of pear, probably couple of grapes, no mangos because they tasted too sweet, because they tasted too sweet I wasn‘t allowed to, no bananas, only one bite of banana!  No biscuits, my mum had to make biscuits at home which were made without sugar but put some ginger in it, so probably like ginger biscuits.  I drank, it‘s called vegetable, which was advertised in Balance as well, Balance magazine, it‘s called Karela and it‘s green vegetable but very bitter, and that is used as form of medicine.  But at the time, didn’t know that it‘s good for diabetic on insulin, and I used to drink juice, fresh juice of Karela, every morning, before lunch and at night.  And it said that my diabetes would disappear drinking Karela water, but it made it worse because I used to go into hypoglycaemia quite a lot, which the doctor didn‘t know what was happening, my parents didn‘t know what it was, and myself didn‘t know that it was hypoglycaemia.  I just thought there‘s something happening to me.  So I used to be in hypoglycaemia for maybe six hours, eight hours, and my parents knowledge was that they gave me an injection, but they didn‘t explain what injection it was, so we just assume it could be glucose injection to bring me round.  So, because it became like six to eight hours, I didn‘t get much oxygen, so I think I‘ve forgotten lot of things because of that.

(6) So what kind of testing of your blood sugars did you do around the time of your hypos?

Before I was told that I‘m diabetic, probably I‘d already got it but didn‘t know that I had it, so every time I went to the toilet and if the drop of urine was left on the toilet there was lot of ants got gathered round the urine area, you know.  And then when I was diagnosed as diabetes, if I went to the toilet and if there was a drop of urine left, because the toilet facilities were different from here, so the drop of urine could be little bit on the floor and the ants used to gather round the urine area, so there was no facilities regarding testing.

What were the toilets like?

The toilets were like underground, this is like long, long time ago, we didn’t have flush toilets like here.  I know it was in 1970s, but the toilets were like a bucket under the hole and so it‘s the floor.  So probably if one went to the toilet, if little drop stayed there and you didn‘t wash it off, then you would probably get insects or ants or flies, you know.

So could you tell that there was less sugar when the ants were not so attracted to it?

Yes.  When the ants weren‘t attracted to it I assumed that there was less sugar in my sugar level.

Did you get much warning when you were going to have a hypo?

I felt a bit giddy, but I wasn‘t explained the symptoms what it was.  I didn‘t have, like sweatiness or lip tingling, nothing like that.  I just went unconscious, maybe because of all these home remedies with insulin as well, like Karela water.  There was other bitter plants, and we just soaked them in water and drank in the morning, which was bitter as well, to say that the sugar level would reduce and to say that the diabetes would disappear.  But at the time we believed in all that, because when somebody mentions

(7) all these new remedies you believe in it, because you don‘t want… because my parents didn‘t want their daughter to be ill.  Plus there was some healers, or con people, introduced themselves to my parents to say that they will cure their daughter from diabetes.  And one was a medicine which was, we thought it was a medicine, but it was dissolved aspirin which I took four times a day, and still keep thinking "why am I not cured?", so I used to cry.  Then my parents would spend no end of money to see that if I can be cured, but after that they knew that there wasn‘t a cure.  But they still kept spending the money because they was rich, was able to afford it.  But if you weren‘t rich, if you were poor, maybe you could get help from other people but not continuous, you know, because it would be like day in day out.  And because I‘ve got siblings as well, so probably my parents would have to think about them as well, how to provide food and clothing, and maybe if my parents were poor then I would have been liability not an asset, so you probably live or you die.

When you say your parents didn‘t want you to be ill, was there any shame attached to having diabetes?

No, there was no shame, it was just didn‘t know what to do.  It was just like nightmare somehow.  It‘s like “why is it happening?”, or because Hindu culture they probably believe in it like it‘s me.  I‘d probably say “what did I do wrong in my previous life?”, that sort of thing, but I don‘t know, I don‘t know if I‘ve done anything wrong.  And probably that‘s how my parents, my grandmother, they would think like that.

Was there any memory in the family of any of your ancestors having something that could have been diabetes?

No, but my dad thinks that it could be his dad, my grandfather, because he felt bit giddy and he just collapsed and died so it could be there, we don‘t know.

(8) You said that when you were at the hospital, your mother was taught to do your injections.  Was there any sense that you might eventually manage your diabetes yourself?

I don‘t think so because I used to run away from injections.  I just didn‘t like it, like any other child, but I used to cry.  And my mum used to do the injections for me because she was taught how to inject, and probably when couple of years went by my mum used to teach me and she used to tell me to inject myself.  I used to sometimes.  To make it easy for my skin, I used to rub probably baby oil or cooking oil on my skin or Vix, to think that it will just slip in.  But I used to cry first, hold the syringe and think about it, whether to do it or not, but after the help of probably Vaseline or baby oil I did it.  But sometimes I just didn‘t, I just went to my own GP and the GP would give me the injection.  But to me, I didn‘t realise that my parents would get the bill, that they have to pay for it, I just took advantage of that.  I didn‘t think of anything else because I was just thinking of to get better and have that injection, you know, so that‘s what I did.  But it was very difficult, and I think because I wasn‘t taught properly how to inject, it made it so difficult.

You mentioned that Karela was advertised in Balance magazine, can you remember when you saw that advertisement?

Oh gosh, that was long time ago now.  Must be about ten, fifteen years.

Were you given any reading matter about diabetes by the hospital?

No I wasn‘t because, I think because they didn‘t have any knowledge or experience about it, so they didn‘t give me any instructions or any information regarding diabetes, so just had to learn by mouth.  Or there was elderly gentleman who lived few doors away from us, he was diabetic, but he wasn‘t on insulin and because he drank Karela water, homemade remedies, so that was introduced to me and that‘s what I did as well.

(9) Tell me more about your diet after you were diagnosed.

My diet was just to eat chapattis and spinach, probably any green vegetables, no potatoes, no rice.  I think that was it, no biscuits, no fruit, so it was very limited.

How did you find this?

Hurtful.  I just thought "what have I done wrong?", you know, "why me?".  And I used to see my friends eat all like sweets, any sugary things, but I wasn‘t, and I used to ask my parents "when am I going to be able to eat all these?" and my parents didn‘t know how to answer that.  The answer I used to get from my parents was that "when the doctor tells us", you know, "when you feel bit better", but that wasn‘t going to happen, so that‘s how my diet was, and mostly crying.

How did your friends react to you getting diabetes?

Friends, I think because they didn‘t have experience and knowledge of it, it became bit ignorance about it or make bit trouble for me, that when I didn‘t eat any sweet things some of my school friends used to say "oh your daughter ate this and your daughter ate that" when I used to get hypo attacks.  So that‘s the information used to be given to my parents, and my parents thought that maybe I did eat sweet things and that‘s why I‘m getting ill.  Then after that they didn‘t believe my friends or anybody else, so I didn‘t go out too much, so the socialising wasn‘t there.  I kept losing friends because they thought it was contagious, but tried to explain that it isn‘t contagious.  I lost friends, I didn‘t have many friends, plus they went to different schools so didn‘t have much contact with friends either.

Did you go back to school at all after you were diagnosed?

Yeah, I did go to school, but the school days became daunting because I used to get lot of abscesses or boils, but boils used to be on my bottom which made very difficult for me to sit down on a chair or on a bench.

(10) Plus teachers didn‘t have enough knowledge about it, but then again I thought if there‘s a biology teacher they would know, but it seemed that there was bit ignorance, so I found it very daunting.  Some of the teachers were okay, but I didn‘t get all these warnings that I‘m going to go into hypo and I didn‘t go into hypo at school at all.  The school days were very strict.  If you made a mistake you have to get that answer correct, if you didn‘t you could get a cane or you could get a ruler.  And at the time when I was diagnosed diabetes there was cane about, so I was caned on my bottom as well which made it very difficult.  So then I mentioned it to my parents, that this is what‘s happened, and because my parents used to put funding into school, my dad talked to the head teacher and mentioned all that, that do not cane my daughter otherwise funding is going to stop from him.  So the cane and all that discipline was stopped for little while, then it continued again.  But I did go to school until age of fifteen, that was high school.  It was private school, we have to pay for our school fees.  I know we pay here from our council tax but it‘s indirect from here in UK, but that was direct fees each term.  But caning still didn‘t stop if you made a mistake in your subject.  And taking physical activities, when I mentioned that I‘m not able to take part in PE, I was forced to do that.  I used to get cramps on my legs which made it difficult to run or walk.  So school days I didn‘t really enjoy it afterwards.  I wanted to, but it made it bit difficult for me as well.  I just thought, if they made some preferences, would have been better.

Those years from when you were nearly twelve when you were diagnosed until you were fifteen sound like a total nightmare.  Was there anything good in those years?

No, because I used to get lot of abscesses as well, so I think maybe if I was allergic to insulin, I don’t know.  Because I read somewhere that you could be allergic to insulin and you can get abscesses or some kind of reaction, so maybe it‘s that, I don‘t know.

(11) What contact did you have with medical practitioners apart from your GP?

I only went to my GP when it became necessary for me, but there was no other treatment, like diabetes check, like six monthly or annually checks.  No eye test, six monthly or annually, nothing like that, so my eyes used to get bloodshot and unable to open my eyes.  The eye drops were limited - I mean, I used to get eye drops but very limited supply, so I was unable to sit outside in the sun, only at the window, and it would get better, then it would start again, my eyes used to be bloodshot.  Diabetes, because there was no check-up, didn‘t know what to do, just went to GP when it was necessary.  To me, I didn‘t really realise that my parents have to pay so much for it, I just took advantage.  And, I mean, my parents didn‘t moan about it, they weren‘t angry about it at all.  When they received the bill they just paid it, but I don‘t know what would have happened if they weren‘t rich.

You‘ve mentioned losing friends.  Did you have any friends during this period from twelve to fifteen?

Not many, no.  I had one, but they were poor family.  They had one daughter at the time, so we both used to go out together sometimes, or she would come to our house or I would go to their house, but apart from that all other school friends weren’t round.  I only saw them probably school holidays but I was losing them, so I didn‘t have any school friends.  I didn‘t socialise because people used to stir things, made it worse for my diabetes giving wrong information to my parents, so I didn‘t socialise much at all.

(12) Can you talk about leaving school?

Yeah, it was round about 1969, but I think I didn‘t really leave school altogether, I still repeated some of the classes after that as well, so I probably left school year after, 1970.  Then after that I did business studies, I went to typing school, so I learn how to type.  I went to learn dressmaking as well, to make dressmaking, and then one year after that, in 1972, probably 1971 to ‘72, my dad employed couple of teachers who would give me private tuition, but it wasn‘t on a regular basis.  It was just now and again the teachers came, because it became so expensive as well.  Then I left school 1971, so from end of ‘71, then beginning of ‘72, I didn‘t have no further education at all, and then at that time we were expelled.

Tell me about being expelled.

In 1972 we were expelled, so at that time the insulin became scarce so it was very difficult, and any other treatment was very difficult as well.  And I was eighteen and a half years of age, came to England, but from small village travelled to Kampala which was about two hundred and fifty miles.  It made very difficult, because every few miles we travelled we were stopped by military personnel to search our luggage, search us, or anything which was unusual to them they just threw them away or took it away from us.  So in that process I lost my insulin as well, some of my syringes and needles, because they thought that that‘s not necessary for me, but luckily we reached to Kampala and got some more medicine from private GP, which we had to pay.  But at that time

(13) the money was no objection, you just paid whatever you could to get out of any pain.  And we stayed in Kampala for little while, and the doctors at the hospitals, they were getting scarce, so you couldn‘t really visit the hospital or the GP, but luckily I had enough insulin to come to England.  So when I came to England in 1972, that was in October 1972, we were taken to military camps.  One was in Donisthorpe, and people who had any disability or any illness, they were checked thoroughly, given proper medicine and got looked after as well.

Can you remember your first check-up in England?

Yeah, I was kept in Yeovil Hospital for fifteen days where they changed my insulin, but what they changed to I can‘t remember.  And the diet, the food was okay but I didn‘t eat meat, so I wasn‘t asked whether you were vegetarian or meat because that wasn‘t heard about it at the time, so the only food I ate from my plate was some vegetables and that was it.  There were some potatoes in it and meat, and when the nurse came to collect my plate, she looked in my plate, what I‘ve eaten, and she asked me why I haven‘t eaten potatoes, so I told her "I‘m not allowed to eat potatoes", and she told me "who said that?", so I replied "I was told from Africa that I‘m not allowed to eat potatoes because it won‘t agree with my diabetes".  Then after that, the following day, she explained that I can eat certain amount of food, which I was pleased, you know.  It was like some kind of a miracle happened to me.  So I ate potatoes following day and that was fine, I ate rice as well because they provided rice dishes as well, so I was happy about that.  And I was allowed to eat some fruit and ordinary biscuits such as Rich Tea and Digestive biscuits, so I just thought "gosh, what‘s happening here", you know, a different world and I just couldn‘t believe it, you know.

Were you given a diet sheet?

I was

(14) given a diet sheet, yeah.  I had to measure everything what I ate, like from breakfast, my ten o‘clock snack, twelve o‘clock lunchtime, then three o‘clock snack, then tea time, which we call evening meal.  So I had to measure everything, and I think I‘ve got diet sheet somewhere, and evening snack as well.  So I had to measure everything, and I was so happy that I could eat lot of things.  And one time I was told that I can eat chocolate, but to, that is if I want to take that risk.  But at beginning I did that, I thought "hooray, I can eat some chocolate!", and I used to be ever so good before my hospital appointment, I wouldn‘t eat any sweet things at all, and then as soon as I come out of the diabetic clinic I rushed to the sweet shop and I buy some sweets and I eat that.  And then I realised, I thought "no, don‘t do that because I will just damage my own organs", so I stopped.

Can you talk about injections at Yeovil Hospital?

Yeah, I think the injections were, they taught me little bit about it, but the injections weren‘t like disposable needles like we get now or pen injection, it was still stainless steel syringes and stainless steel needles, but they were small.  And the urine test was little tube where you put five drops of urine and ten drops of water and a tablet, so that was still around at that time, and then, yeah, I think that was it.

(15) Did you notice any change in your health after going to the hospital in Yeovil?

Yeah, I did feel better, I think because of change of insulin and change of diet.  I felt lot better then.

What happened after you came out of hospital?

When I came out of the hospital, we were still at the army camps.  We stayed there because they were, I think probably Social Services I think, they were looking for place for us to go and live.  So we were offered a place in Scotland - it‘s on high ground, called Wick, but because of the cold climate my parents refused, that we don‘t want to go there.  And the next one was Newcastle-upon-Tyne, and that was offered to us, so we accepted it and we went to live in Newcastle.  And then in Newcastle, I was admitted to hospital again to monitor my diabetes, my eyes, even my feet as well, because I didn‘t know that they have chiropody, you have to attend chiropodist and look after your feet, I just took it as normal.  But knew little bit about feet - that diabetics could get gangrene or they could go blind.  So that was my first diagnosis of diabetes.  I used to cry about that, because I thought I would go blind or I would lose my legs, so knew about that, but didn‘t know that there would be six month chiropodist treatment or eye checks.

What year did you first go to the hospital in Newcastle?

We went to live there end of, yeah, December ‘72, so it was January ‘73, and joined with the GP as well.  So from GP, he completed all the necessary forms for me, like prescription charges, because I didn‘t know that you get free prescription.  So first time when they changed my insulin, I went to the chemist, took my prescription and a form with me and

(16) took my purse out to pay, and he says "you don‘t pay", so I said "I have to pay", because I didn‘t know anything about free prescription, and he just looked a bit oddly to me, he thought I was silly or something, and I kept demanding that I have to pay and he wouldn‘t accept the money.  So then I just got my insulin and all that, and then I ask my doctor, and the doctor explain to me that I get free prescription so don‘t worry about that, so then from that time I accepted it.

Why do you think your GP felt that you should go into hospital again in Newcastle?

To monitor my diabetes and if I needed any changes in my insulin or my diet.

Were things not going so well for you then?

No, it was going okay but I think he just felt that I might need some changes in insulin  or diet, and probably, maybe because I was new there, a new patient to him, he probably thought that I might need more monitoring of my diabetes.

Will you talk about your time in the Newcastle Hospital?

Yeah, I was there one week just to monitor my diabetes and there was no change of insulin, but I can‘t remember what insulin it was, it could be isophane or Actrapid, I can‘t remember which.

How often were your injections?

My injections were reduced from four to two, which I was very happy about that.

And what about testing your blood sugars?

At that time there was no blood sugar testing, so what used to happen was they used to do twenty four hour urine collection, which I had to collect urine twenty four hour, and then following day I had to take it to the hospital, carry it in a bus, and then take it to the hospital for more test.

(17) Can you talk about what was happening in the rest of your life apart from taking urine samples to hospital?

We moved to Newcastle, which was called Gateshead upon Tyne, and we were offered a house there.  It was a council house which we had accepted it.  It was three bedroom house because I‘ve got other siblings, I got two sisters and one brother and my parents.  Some of the neighbours were okay in that area, maybe one or two – you probably get minority who could be bit problem families, but the other families did support us in every way, like school, bus services, going to hospital, going shopping.  There was one neighbour, she was so kind, she would come with us and show us around, you know.  And if anybody made any remarks, there were few families would tell the family who has made any remark that that‘s not acceptable, but that was in 1970s which was very good.  And we felt like little bit at home, but not hundred percent at home, because I grew up in Africa and the climate was different, and when we moved to Gateshead it was like cold weather and we just thought "how we going to cope?".

Were you in touch with any other Ugandan Asian families?

Some of them, because at the time we don‘t know where people had accommodated, so we weren‘t.  We were in touch with my auntie and my uncles and them, but apart from that not many.  And then while I was in Gateshead I registered to go to college.  I went to Gateshead Technical College to do business studies and secretarial course, but at that time my English wasn‘t very good but it improved.  I used to take English classes as well.  So I think what I‘ve achieved up to now I‘m pleased about that, so I haven‘t done very bad due to my condition as well.

(18) Before I went to college in Gateshead, I went to rehabilitation unit where they would educate one to intermediate level, like doing English, maths and artwork, and socialise with other people as well.  And then I went to, it was called Finchale Training College - that was in Durham, and I used to learn some of the business studies there, simple bookkeeping, typing.  And then in 1974 I went to Gateshead Technical College, because I found an interest doing business studies secretarial course, so I thought I‘ll register to go to Gateshead Technical College and further my education.

Did you notice any differences in attitudes to diabetes when you came to this country?

At the time, I didn‘t tell people that I‘ve got diabetes because, what happened was, I used to go and look for jobs and my interviews used to go fine, but when the employer used to ask is there anything they need to know, and as soon as I mentioned diabetes that was discriminated against that.  But before that it was like, yeah you‘re doing really well – think you got the job, but as soon as you mentioned that, it was discriminated – that you‘d be a liability to an employer.

Was this in the early ‘70s?

Early ‘70s, yeah.

Can you remember what kind of employers refused to take you because you‘d got diabetes?

Well used to go for office jobs, and one was like even DHSS, insurance company.  There were quite a few, can‘t really remember many.  The only chance I got was at Job Centre, because they thought that they‘d give me some experience towards work, so they only employed me for maybe month or two to see that that goes very well on your CV.  But after that, not really, because lot of employers used to just refuse to employ me.

(19) Tell me about the first job that you got.

Right, the first job I got was, it was a very small company, it was manufacturing company, retail company.  They did employ me, they didn‘t ask medical questions at all, and while I was there, my second week, they asked me about my medical and I told them, and then end of the month they sacked me because of diabetes.  That was in 1977.  And then there was another job in 1977, it was called refrigerator company - air-conditioning.  They employed me, I hadn‘t told them about my diabetes because they hadn‘t asked me about anything, but at that time there was a staff who had been there long time who made a mistake, a very big mistake, in their financial situation, so the blame was put on me.  But I didn‘t know about any policies or procedures at the time, like could be race discrimination or what, so I was sacked from that so I accepted it.  But my best job was in education department.  That wasn‘t discriminated at all, and they called it as job creation instead of YTS, so I enjoyed my working life there.  I worked with teachers, and then that was in 1978 to ‘79, and then I moved to Leicestershire.

What was happening to your parents during these years?

My parents, we used to help my parents a lot.  My mum and dad used to go and learn English.  They used to go to day centres where they could socialise with people, but because lack of language, language barrier, that made it little bit difficult for them because of Geordie accent!  But my dad does speak English, he understands Oxford English, and any other accent made it so difficult for him to understand, but afterwards he did understand little bit, when people talked bit slowly.

Did your parents find work?

No, my parents didn‘t work, because my dad‘s health deteriorated because of the shock expelled from Africa and losing all what he worked for.  I think he felt that it just went down the drain, all his hard work, and my mum, so they didn‘t work.  They just looked after my brother and sister who were young.

(20) Why did you move to Leicester?

Because of jobs and because of my parents as well, because there was no Indian community there, so they thought if they live with the community, it would be better for them and they can go out, they can socialise, and the language as well. 

What contact did you have with the medical profession in Leicester?

We moved to Leicester, registered with local GP, then I was sent an appointment from diabetic clinic to see how I‘m getting on.  And I think at that time I had my cataract removed in 1979.  That was in Newcastle, so I was going backwards and forth from Leicester to Newcastle to get my eye treated properly because I had stitches, so the specialist who did my operation, he wanted to do all that for me.  And then when all that was finished, I still had to go to the eye clinic in Leicester to see my eyes progressing okay, which was fine, but at that time I was getting cataract in my other eye, which was right eye, so I had regular check-ups at eye clinic.  I had regular checks at diabetic clinic as well.  I didn‘t have to stay in the hospital, just like one day check-up and blood test.  I think that was it.

How were you treated by doctors and nurses in Leicester?

It was okay.  They asked me questions regarding how I‘m getting on with my diabetes - any hypo attacks and all that, which I had couple of hypo attacks in Newcastle.  And I used to get the symptoms, like sweaty symptoms or tingly lips, so I used to get that so I was able to control that myself.  And when I moved to Leicester, I was able to control that as well.

Did you ever go unconscious after coming to England?

Yes I have, that was in Newcastle, the first time I was unconscious.  My parents called an ambulance, ‘cause I‘ve got a sister who‘s two years younger than me so she can communicate, so they called an ambulance.  But at that time I used to make silly noises, I probably used to laugh a lot, and my sister and they used to say “when you went into hypo you were just smiling”, maybe I was happy!

(21) And when the ambulance person came, they took me to the hospital.  I was semi-conscious what they were saying.  Then I think they gave me glucose injection, which they explained, and then I was given some food to eat, which I didn‘t have any knowledge of that, that I have to eat something after hypoglycaemia attack.  And maybe if it was to go to work following day, I would go to work or go to college, I didn‘t feel tired at all or drained.  So that was my first hypo attack then.  It was 1973, yeah, must be round about that approximately.

Were you given anything to read about diabetes in the 1970s?

At first no, but I had, where you can become a member of BDA, so I became a member of BDA.  And I read on a notice that parents whose children are diabetic, they can go to the meetings and that.  But instead of that, I went to a meeting for myself, because my parents didn‘t understand English too much.  So I mean, they did come couple of times, then I used to go on my own.  So used to go to all these meetings.  They used to have “how your diabetes is progressing”, or probably they would have cheese and wine ‘do’ where they talk about diabetes, or like treasure hunt when people sit down and people who are in charge talk about diabetes then, the diet, the insulin, the injections, so I was talked about that.  And I used to write to BDA then because I knew about BDA, and they used to send me the information, and I used to get Balance magazine, so used to read about it from Balance magazine.

(22) What were you doing in the rest of your life after you moved to Leicester in 1979?

When I moved to Leicester I was seeking employment, and my friend from Newcastle came to visit me, so we went out, and that‘s where I met my husband.  He asked me out, and because he‘s English it made it bit difficult.  Can I start before that instead?  Because I‘m Indian, getting married and diabetic it became that I‘m disabled, but invisible disability, so looking for partner for having any illness in Indian culture made it very difficult.  People didn’t want to know if you had some kind of disability, and I was introduced to men who would have disability, could be diabetes or could be physical disabled or any form of disability, which I didn‘t want that, because I thought I myself have got some kind of disability, I want something better in my own life.  And after that, I met my husband in a public bar and he asked me round, then he proposed to me in a short period of time.  And maybe it was meant to be, so I just said "yes" without thinking and I told my parents.  I think I must be very confident to tell my parents about it, and it was bit silent, but they accepted it.  They met my husband then, they invited my husband for dinner, and after that they said "yes, okay".  Then my parents told my husband that his daughter’s diabetic, “would that be a problem to him?”, and he said "no", because he‘s got a niece who‘s diabetic, so he knew little bit about it, but he said "there‘s no problem about that".  And because I‘ve got a sister who‘s younger than me, she was against it, but she accepted it anyway because they all wanted something better for me.  So my family didn‘t reject or anything for me, you know, they accept all that, they accepted my husband.  Maybe there was little bit discrimination from both sides, from my side and my husband‘s side.

(23) How did that show itself?

Well what happened was, I used to get very upset - if there was my side got married and no invitation I used to get upset, and I think my husband probably the same, if his side didn‘t invite him and all that, I think he got upset.  But after that, I used to work at County Hall, Leicestershire County Council.  I used to work there within social services, and I used to share an office with the principal officer, who had married a Swiss woman, and he told me about his experience, that “don‘t get upset, the family you have made, the friends you made, just keep them and don‘t care about anybody else if they don‘t want to care about you”.  And then things got improved, so I didn‘t think about that, just thought about myself, my husband, because I had two daughters and just thought about that, that‘s all.  And I thought if people don‘t like it, it‘s their look-out.  Well, when I met my husband we used to hold hands, and used to get funny looks from both sides, you know.  They just thought "what‘s he seeing in her?", or "what she sees in him?", you know, and we used to get very stary looks from people.  And we been together, well, twenty five years now, so we didn‘t take anybody‘s word or didn‘t listen to other people to make it worse for us.

(24) Can you tell me about having your two daughters?

Yes, when I got pregnant I didn‘t have much knowledge of pregnancy and diabetes.  I used to do my urine test, because blood test wasn‘t around to do by yourself, so used to do urine test which showed high sugar level.  And my understanding was, if it‘s really high you don‘t really need to eat, so I didn‘t eat then, and I used to go into hypoglycaemia then.  I used to work for Health Authority at the time and I have gone into hypo at work, so then the diabetic clinic start monitoring my blood sugar level and introduced me to do blood test about four times a day, or maybe more than that.  And it was different blood test, because I had to cut the strips and put in my record book to see what it shows each time.  So I had to do one in the morning, one before breakfast, one before lunch, one before tea, one before bedtime.  Didn‘t matter what the urine test was, because they told me the urine sample wasn‘t accurate, so I did blood test.

What year was this?

It was from November 1980 to July 1981.  And then I was told that I can‘t go full month pregnancy, not nine month – my daughter was born premature because they had to induce me.  But before that, I used to feel sick.  I didn‘t have morning sickness, but I would feel sick any time of the day, and as soon as I‘m sick I have to replace what I‘ve lost, so that made it very difficult.  I didn‘t have chance to, like if I was sick and made a mess on my clothes or anything, I didn‘t have chance to clean that.  If I cleaned that I would just go into hypo, which has happened as well.  It has been embarrassing part of my hypoglycaemia, part of my diabetes.  At times I have passed out in the bath while cleaning myself, and didn’t have glucogen at the time, so had to call an ambulance.  And I‘ve been taken to the hospital naked, a towel wrapped round me, that was very embarrassing with

(25) fat stomach!  Then last three months of my pregnancy, I was just kept in the hospital.  I was only allowed to go home probably weekend or couple of days, then stay in the hospital until end of my pregnancy.  But at that time my sister was getting married, and the registrar would refuse me to go to the wedding in case if anything had happened to me.  And luckily, one of the registrars accepted that I should go, because it‘s my sister, but supervised as well.  And in my sister‘s wedding I had been sick, the only person could do anything is my husband.  He‘s been very good to me during my pregnancy, after my pregnancy, and during my children‘s birth as well.  Then my daughter was born a month premature.  She was kept in intensive care for a month, which I got little bit depressed about it, because I couldn‘t keep her with me.  I had to visit the intensive care every day to feed her, go and see her, how she‘s doing, and then she had to be tested for diabetes as well, to see if she‘s got it, and that was really painful for me.  I know I had to prick needles on my fingers or my heel, and that‘s what they used to do to her, and that was really painful to see.  Then I was allowed to go home.  I was fine, but I still had to be careful because of my diabetes.  If my baby was crying, I had to leave her to cry and feed myself first so I don‘t go into hypo, so I can look after my baby.  And my husband was brilliant, he would do lot of things.  He would feed her, wash her nappies, because nappies weren‘t disposable at the time – I had to sterilise the nappies, so my husband would do that.  My parents helped as well.  Then I stayed with my mum for a month, so she could take care of me and my baby as well.  So she had to care for two people.  And my daughter was born in July ‘81.

You say she was induced.  Was there any question of you having a caesarean?

Yeah, I was given a choice: caesarean, induce or epidural.  I had epidural - I wouldn‘t recommend people to have epidural, but that depends on individual.  It was very painful.  It seemed like it took forever to give birth!

Did you breast-feed?

I breast-feed at the beginning, but my daughter wouldn‘t take it, so I had to give her bottle afterwards.

(26) Was that the first time you‘d ever done blood tests, when you were pregnant with your first child?

Yes I had.  But pricking the fingers, didn‘t have special kit to prick fingers, the pricking device was needles.  You had to use needles to prick the finger, which was very hard, and sometimes if I was unable to do that, or I didn‘t feel like pricking my fingers, I would ask my husband to do it for me.  And he was brilliant, he did it for me.

Can you remember what the testing kit was called?

Was still BM sticks, but had to cut them in half, and then cut in small and stick them in a record book to see what your blood sugar level was, I mean even writing the blood sugar level, you had to stick the BM sticks in the record book.

How did you feel being at home with a young baby and being diabetic?

I enjoyed my time with my baby, I would do it again, but diabetes bothered little bit, because had to monitor every, probably, four times, five times a day, what blood sugar level was, and to remember to eat something so don‘t go into hypoglycaemia.

Tell me about your second pregnancy.

My second pregnancy was in 1983, well got pregnant before that, but my daughter was born in 1983, January.  She‘s got same birthday as mine, she was born on my birthday.  But second pregnancy made it bit easier, because I knew what to expect.  I did my blood sugar level, I ate whether it was high or low, and I told the professor to keep away from me because I didn‘t want it to be induced, I wanted to experience normal birth.  So all that happened the way I wanted it, and my daughter was born.  I had normal birth, and she was born on my birthday, which was fine.  And I breast-fed my daughter.  She was healthy child when she was born, she was born seven pound ten ounce, but my eldest one was six pound four ounces, maybe because premature baby I think.  But I still had to do my blood sugar level, and it was the same procedure - cut the BM stick in half and stick on the record book.  And because I used to breast-feed, it made it bit difficult, because I couldn‘t ask someone to feed my baby unless if I expressed milk, so gave me chance, well gave me little bit respite, you know.  But still had to make sure that I eat on time.  But if she was crying on her feeding time, I had to leave my baby to cry so I can feed myself first and look after her.

How long did you breast-feed for?

I breast-fed my first one for six months and then I put her on bottle.

And your second baby?

My second baby, but no, sorry.  The first baby I breast-fed four months.  The first one I fed four months, because she was very slow in feeding, and the second one, I breast-fed her six, seven months, then I put her on bottle.

(27) Did you work while your children were small?

Well, when my first child was born, I went back work after six months, then I got pregnant again.  So when my second one was born, I didn’t return back work, I finished my work.  I stayed home to look after both of them, with my husband‘s help and my parents‘ help.  And I enjoyed looking after them, which I would do the same again if I have to, but only problem was, when my eldest one was about three years old, I had gone into hypo.  I know that she had acknowledged before little bit, but I was on my own when I was looking after both of them, and my young one was eighteen months old, and my eldest, her name is Emma, she was three years old.  So what she did was, I could talk little bit, but she was so good to understand what I was saying, so she got ice-cream from the fridge-freezer and she start feeding me ice-cream, because I told her to get a spoon and keep putting ice-cream in my mouth, and I came round.  And then I contacted my husband to come home.  But when he arrived at home, he contacted my mum to come and look after us until he finished work.  But at the time she thought “my mum is going mental”.  And I had some other hypos after that as well, when both of them were bit older, and they understood what was happening.  And at that time, they really thought “my mum is mental”, because it is bit frightening for child because you make funny noise, your hands shake, you‘re unable to talk clearly, your speech is bit slurry, and you stare, you stary eyes, and that could scare anybody.  So my both daughter Emma and Sarah‘s done the same procedure again, because they thought ice-cream will do the trick, and they‘ve experienced all this.  I had to explain to them what happens, and while they‘ve been growing they understand more what to do, or what happens to diabetics.  And even if I don‘t acknowledge

(28) what‘s happening to me, they do, and they‘ll put something in front of me, a food or sweet drink.  And they have to be firm with me, otherwise I would retaliate and I wouldn‘t eat, which sometimes I do that, so that‘s why they‘re very firm to me!

Have they learnt about diabetes from other sources?

Yeah, they read Balance magazine, or sometimes they do a research on website - what happens, and they ask me lot of questions, you know, what to do.  And I keep glucogen injection at home, so when I go into hypoglycaemia, my young daughter Sarah, she‘s confident and she‘s not scared to give an injection of that, and she doesn‘t hesitate, so she‘ll do it.  My eldest one, Emma, she feels that she would hurt me, so she‘s little bit reluctant to give the injection straight away.  But if she feels that she doesn‘t really want to do that, if my husband‘s not at home, she‘ll contact my husband if he‘s able to come home from work, or she‘ll ring the ambulance and explain what‘s happening.

How often do you have hypos?

Depends, the last one I had few months ago.  Yeah, few months ago, but that was early hours of the morning so my husband was here, so he treated me with glucose injection.  But now, when I go into hypoglycaemia, when I come around, I just feel drained.  I don‘t have energy at all; I just need a good sleep.

(29) But do you have any idea how often you have a hypo?

Probably three months, six months.  But now the summer is approaching, it affects some different ways, so sometimes it could happen like every week.  ‘Cause last year, in 2003, in summer, it just happened like every week, you know, and I was just getting depressed.  I thought it‘s never going to go away.  Even like reducing my insulin, eating on time, and checking blood sugar level, and it was just happening like every week.

Were you actually passing out every week?

Yeah, I was, yeah.  But at the time, most of the time, somebody was round with me at home, so that made it little bit easy.  But one time, I think it was in 2003, the month was July, when I passed out, and I was on my own.  I was just cooking Sunday roast.  I‘d eaten about twelve o‘clock and then I felt bit odd, so I thought I‘d better eat some more.  So I just wanted to eat something different, so I had some curry in the fridge and chapatti, so I thought “I‘ll eat that”.  I warmed it up.  While I was eating, I just collapsed on the floor, because half of the chapatti was left on the worktop.  And I just crawled near the fridge-freezer shouting "help, help", because I thought somebody might help me, or hear me, because I was on my own.  And I have got a mobile phone, but once the brain stops, you can‘t do anything; because brain‘s probably telling you to get the phone, but your body‘s not functioning at all, so not able to do any of that.  So I managed to crawl to the telephone.  I dialled 999, they asked me few questions, my name.  My speech wasn‘t very good, bit slurry, so managed to, they probably understood me.  They kept asking me to repeat my husband‘s telephone number, which I was able to repeat twice.

(30) The third time, I just said it half of the number and refused to repeat the number, because I kept saying "I don‘t know".  Then they asked me if the door was unlocked, if the paramedic would be able to enter the house.  I told them "no, the house is not unlocked.  The windows are open, so you‘ll have to climb over the window and get in the house".  So that‘s how paramedic treated me in July 2003.  So, I just thought I was a risk at the time, but then I just thought, at least I managed to do something and managed to call an ambulance, you know.

Can you talk about your experiences at work, since your children have been born?

I went back work in 1984.  I worked part-time, and somebody, a child-minder, looked after my two daughters.  But I found it very difficult, because my life was made miserable in working place, working environment, so I gave up that post and started working in the evening, from 1985 to ‘87.  I would look after my daughters during the daytime, monitor my blood sugar level, because they were at that age they would understand little bit, or what I would do, I used to go to my parents house and stay there until my husband would get home.  Then I would go work, and my husband used to look after my two daughters in the evening.  But, when I worked in the evening, it was flexible, so you could go out of your desk and eat something, and people knew about it.  But I had one experience, when I was working in the evening, I had gone into hypoglycaemia and they called the ambulance at that time.  But I wasn‘t dismissed from work.  Then after that, I went to work during the daytime, when my two daughters, Emma and Sarah, were able to look after themselves little bit - that they could get home from school.  So I still work part-time - I work for Leicestershire County Council.  So I would take them to school, and then pick them from school

(31) when they finished.  But sometimes, during their school period, I had gone into hypoglycaemia, and it made it bit difficult for teachers, because no-one to go and pick them up.  So that made little bit difficult.  And, my working time, even now, sometimes I have hypo attacks at work.

How have your colleagues reacted over the years?

Because I got instructions what to do on the notice board, and I‘ve told my manager and the colleagues I work with what to do, and I keep a hypo stock in my drawer - sugary drink, glucose and sugar.  And I‘ve given them instructions that if I look stary eyes or anything, to stop me and tell me, you know.  So what I do is when they tell me all this, that I don‘t look well, I just stop and eat something quick, because before I used to retaliate.  I used to say "I am fine", because I myself feel fine.  I don‘t have any warnings any more, but my face looks bit sad or stary eyes, so I just stop and think, and I‘ll grab couple of biscuits or banana or sandwich.  I‘ll eat that first, and then do my other work after.

What have the attitudes of your colleagues been over the years?

Since working for City and County Council, it‘s not been bad.  I mean, when I have supervision, my manager would ask me “how is your health, because sometimes if you have hypo attacks, this is happening quite a lot isn‘t it?”.  And some of the mangers are understanding; they‘ll just say "well, these things do happen, it‘s not under my control", you know.

(32) How much contact have you had with the medical profession over the past years?

Well, if I think I‘m feeling bit depressed regarding my hypoglycaemia, then I‘ll contact my diabetic health visitor.  Then what she would do is, how much insulin I take, what to reduce, and sometimes I do all that by myself, and it still happens.  That‘s when I get depressed and I contact the health visitor to give me some advice.  So I get all these questions get repeated all the time, so I have very limited contact with the hospital then, because I do all that by myself.  I record it, and I‘ll tell my daughters and tell my husband this is what I‘m doing.  But if it pursues after that, then probably I would insist that if I can see the diabetic specialist.  And from that, it‘s again the same procedure again; maybe reduce some of my insulin, or am I eating enough, which I do.  Maybe sometimes it could be my fault as well, I‘m not saying it‘s anybody’s fault.  Maybe, if I‘m busy and I haven‘t eaten on time, it could be my fault, then I‘ll go into hypo; because it does happen.  Sometimes you just think "I‘ll eat in a minute", or even if you think I‘m going to eat on time, but it happens before that time.  So, I mean, the medical profession, they‘re doing their best, and I think I‘m doing my best as well.  So, I don‘t like to disturb them, because if I can manage all that by myself, I‘ll do it by myself.  If not, then I‘ll contact and see if there‘s any way they can help me and give me some advice.

What advice have you received at the hospital about the frequency of your hypos?

What happens is, they have told me if I inject on the same site, change my injection site.  Because I‘ve been injecting probably about forty eight years now, nearly forty nine years, my skin gets tough and hard, so maybe that‘s making it difficult.  Sorry, I meant thirty nine years, not forty nine, my mistake!  I‘m giving my age away!  Or reduce the long lasting insulin, because sometimes I get confused which one to reduce.

Has that made any difference?

Yes it has, because now, what I‘ve done is, I‘ve written all these instructions down, so I talk to my daughters or my husband, and they‘ll remind me which one to reduce, and make sure that I don‘t inject on one site, you know, change my injection site.

(33) What complications have you had over the years?

The first one was cataract operation.  That was in 1979 - if I rightly remember it was February 1979, and that was done in Newcastle-upon-Tyne, because that‘s where I used to live.  And that was very successful.  I was given local anaesthetic, which you can imagine painful.  I wasn‘t allowed to do anything at all, to stay calm.  And I had lot of help and advice during that time, and lot of looking after as well from professional medical staff.  Then I moved to Leicester.  I had another cataract which developed in 1983, probably little bit before that, so my operation was done in July 1983.  My young daughter, Sarah, was only six months old.  I was glad that I‘d got my parents, who helped me.  And my husband - he was brilliant.  He looked after my eldest daughter Emma, he‘ll do all the house chores, which I couldn‘t ask for more.  And I had carpal tunnel operation.  I think that must be round about 1986, I can‘t remember exactly, but I think it was round about 1986-87.  I had carpal tunnel operation in both hands at the same time.  But at that time, Emma and Sarah, my daughters, both of them were young, who need lot of caring as well.  But with my husband’s help, and my parents and my sisters, brother, they supported me, which made it little bit easier, and I thank all of them very much.

(34) Will you talk about the ways in which members of the medical profession have behaved to you over the years?

Well, I wouldn‘t say that they‘ve behaved bad.  The only thing I would like is to see the same doctor when you go to eye clinic or diabetic clinic, you know, because they know what‘s happening.  But maybe because they‘re busy as well, and maybe the other doctors want experience how to deal with diabetes and have knowledge.  So maybe other diabetics become guinea pig for them, and which is understandable, because we all have to learn from somewhere, but it would be nice just to see one, just one doctor all the time.

What about the nurses?

Well, I see the same diabetic health visitor anyway, so there‘s no change.

How long have you had a diabetic health visitor?

Since I moved to Leicester, since ‘79.  But before that, because there wasn‘t many diabetic patients, they used to do home visit, but because it‘s increased in diabetes, so it‘s bit impossible for them to do home visit; which was good, because they met the family and it was different.  But because of increase of diabetes, it‘s bit difficult for them to do home visit.

So where do you meet your health visitor?

I meet my health visitor at the hospital.  ‘Cause when you ring them, they do give you the appointment immediately, you know, or would see me lunchtime if I preferred, you know, so it hasn‘t been bad at all; been pretty good.

Have you noticed any changes in attitudes towards you over the years that you‘ve had diabetes?

No, no there‘s no bad attitude at all.  If I didn‘t understand how to use any equipment, like such as blood test meter, or I didn‘t know how to use the pen cartridges, because I did go on pen injection, and they were very good to teach me how to use it, or told me to contact them any time of the day.  And if they‘re not available, they would ring me back and explain how to use it.

Can you remember when you changed to using a pen?

I used pen very briefly last year, 2003, when I w as having hypo attacks every week.  So I used the pen injection, Glargine, and I can‘t remember what the other one was called.  That‘s why I went on that pen injection, but it meant I would have to give four injections to me, and I didn‘t really prefer four injections a day, because it depressed me.  So I went back on my usual insulin again, Insulitard and Actrapid, and I use disposable needles.  I know it‘s still old fashioned, but I prefer it, still it‘s a needle to put in my skin.

(35) Will you describe a typical day now?

When I get up in the morning, the first thing I‘ll do is I‘ll have a shower, get ready, I‘ll do my injection.  Some days, if I‘m going to drive, I don‘t do my blood test first thing in the morning, but if I don‘t drive I do blood test, have my insulin, have my breakfast, do a few chores in the house.  Then if I‘m going to drive, I‘ll do my blood test before I drive, and if it‘s low I‘ll have to eat something, wait, and then if I think I‘m feeling okay, if not I do blood test again, so that meant pricking my finger twice at that time, then I‘ll drive, if I think it‘s safe to do so.  I‘ll go to work, I start my working chores.  And sometimes the work situation can be stressful because the problems of other people I hear, because I work for City Council Social Services Disabled Children’s team, and part-time I work for Benefit Support team.  And for disabled children, you just think "gosh", you know, you just think my health is lot better than this physical disability.  You feel lucky in some ways, because some children have really hard life, probably from birth, depending what their parents‘ medical situation is, or ignorance for their own health, which passes to the children, to the baby.  And you just feel lucky to be alive and lucky to do lot of things.  And then I work for Benefits Support team.  I deal with, well, even children to older people in that team.  And when you have to contact them regarding their benefit, some of the elderly people are confused; they have dementia problem, mental health, or hearing problem.  Because they have like social services input, home care input, or carers’ input, and then there‘s other people who contact them to check for their benefits, it complicates their life.  They get confused.  It‘s just that somebody wants to

(36) help them regarding their care.  So it‘s very difficult sometimes, so you have to find out who to contact, and make that provision for them so they can get looked after properly, and if they get all their benefits then they can pay for it, you know. 

Has your promotion been affected by having diabetes?

My profession has, because maybe sometimes I don‘t feel confident.  I can do lot of things where a lot of colleagues have said "why don‘t you go for this?  You can do it".  And probably, I think sometimes, to climb up the ladder, it can be discriminated as well, because I know I have got, where I work, got Disability Discrimination Act procedure, but it still affects people who are disable.  Because one post I went for, that was to work for the police force, they did offer me the post, but because of my diabetes they could only offer me twenty hours post, which I couldn‘t afford to work twenty hours, and the reply I was got was that I‘m a liability, not an asset.  So without knowing me, and without knowing my working life within the department or within work environment, I think you just get judged that people with disability are liability, not an asset.

(37) Do you have time for exercise?

I do sometimes.  I don‘t go to health centre, but I do have video tapes - I do exercise at home sometimes, if I haven’t got full house.  Because I’ve got grandson, I look after him sometimes, which keeps me healthy and young.  And lot of exercise, don‘t have proper exercise I do, maybe all the exercise goes on doing household chores - cooking, cleaning, that sort of thing.

When you look back over your life so far, how large a part has diabetes played?

I think diabetes has played... it‘s a major part of my life, because I have to think, or I need to eat something now.  I have to monitor my blood sugar level, or if I go out, I have to think that I pack some lunch with some sandwiches with me, you know, or take some food with me, sweet drink, maybe even chocolate, keep in my bag.  So that plays a big part in my life.

What message would you give to somebody being diagnosed with diabetes now?

Well, if somebody was diagnosed now, I think it‘s not end of life at all, because you get lot of information.  And there is British Diabetic Association helpline - they help.  Even your own GP, the hospital - you get lot of help.  And you can do lot of things as well, it doesn‘t really stop you.  So don‘t get worried - just go for it.  And just monitor your blood sugar level, make sure that you‘ve eaten something, and you can do lot of things.  I mean, I used to do exercise religiously.  I used to go to health centre, I used to go swimming lessons as well, but I made sure that I‘ve eaten something before that and carry some food, so I eat something after I‘ve finished my exercise.  It‘s just recently I‘ve not been able to, but I wouldn‘t really stop diabetes do you anything, you know.

(38) What do you feel you‘ve achieved?

Well, I‘ve achieved education as well; I‘ve learnt quite a lot.  I‘ve got two daughters, which I thought I would never have kids, being diabetic, but I‘ve got two lovely daughters.  I‘ve got one grandson, who‘s two years old.  And I think it‘s just wonderful.  And I‘ve achieved lot of knowledge regarding diabetes as well, and regarding health in general.  And because I work for wonderful people, I‘ve achieved quite a lot, and learning from that as well.

And how do you see the future?

Well, I used to do lot of charity work for diabetes, which I‘ve not been able to, I only sell raffle tickets.  But in two years’ time, I would like to run for diabetes charity, which I really love to do that.  So if anybody who‘s diabetic, don‘t think that this sort of thing would stop you.  If you think that you can do it, just go for it, and there‘s lot of help.  If go for it, there‘s lot of... they do blood testing while you do running or marathon running, you know, and there‘s lot of things available for you, like glucose drink, Lucozade drinks, sweet drink.  And that is what I‘d like to do in two years’ time, because my grandson will be about four years old, so my life will be little bit easier.  And that‘s what I‘d really love to do.


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