Here you can read through
the whole transcript for this interview. Click on the listen icon to hear any of the tracks.
You can search on this transcript by clicking
for the research tool. Alternatively you can
download the full transcript [here]
Person with diabetesBorn 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.
(1) Hi, I was born in Uganda called a small village Kigezi District
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
And what kind of schooling did
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
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
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
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
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.
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
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
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
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
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.
So what kind of testing of your blood sugars did you do around the time of
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
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
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
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.
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
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
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.
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
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
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
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.
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
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
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
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?
given a diet sheet, yeah. I had to measure everything what I ate, like from
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.
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
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
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.
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
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
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
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
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.
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!
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.
What were you doing in the rest of your life after you moved to Leicester
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.
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.
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
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
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.
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
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.
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
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.
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
Were you actually passing out
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
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
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
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",
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
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.
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.
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
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
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
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.
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
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.
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
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.