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Person with diabetes and family memberBorn in Pangbourne, Berks in 1956. Diagnosed Type 1 in London in 1979
Overview: Gillian was diagnosed when she was 23, while working as a
journalist in London. At the age of 26, a consultant advised her that if she
wanted children, it would be a good idea to have them soon, because "you`ve
got to consider whether you`re going to see them grow up". Her partner
didn`t want to be a father at that stage, so she decided to be a single
parent and has brought up two children on her own. Her daughter was
diagnosed with diabetes in 1999.
There is also an interview with Gillian`s son, Tom.
Well, I was born in Pangbourne
in Berkshire. My parents had very different backgrounds.
My mother came from a wealthy background - her father had been a jeweller
and sadly died at the age of thirty-three with cancer of the bladder, so she
never knew him - and was brought up by a step father, who was an artist, and
who then went into the civil service. And so they had a reasonably comfortable
background. My father has a very working class background; big family, from
Southend. I think it‘s probably true to say that he excelled their expectations,
in the sense that he took a job after he‘d done national service with the
John Lewis Partnership, and was pushed quite hard and went into management.
When I was four we were living in a council house, and my father won a thousand
pounds on the Pools, the Vernons I think it was then, and we moved into a
house that had fairly recently been built, in a village on the outskirts of
Reading called Woodley, which then grew and grew and grew, and doesn‘t look
anything like it did in that time. And my father stayed with the John Lewis
Partnership, and retired some fifteen years ago. And my mother was a school
secretary from… I think probably I was eight or nine when she took on that
job. So, I guess a pretty solid middle class background. I certainly grew
up thinking I was middle class, rather annoyingly I think, in the sense that
I was very aware of that, and some of my friends at school had more working
class backgrounds. And I‘m ashamed to think back on that really, because
I thought I was a cut above.
Tell me about your schooling.
I went to a very nice infant
school, and then moved over to the junior school, part of the same school,
and did reasonably well. Did my Eleven Plus, and I am told that they had
to push me through so that I passed, and not go to the secondary modern and
to go to the grammar school. But I went to the grammar school, where I was
extremely unhappy for a very long time because I was very badly bullied.
I was an underachiever; I remember almost nothing about five years, so I can‘t
help you on that I‘m afraid. Didn‘t do very well on my GCSEs, but was picked
up by a man I shall be eternally grateful to, who was the deputy head of the
sixth form college, and who said that he thought I could A Levels. And two
other teachers backed him, and I flew from then. Did very well in the subjects
I liked, and got good A Levels and went to Warwick University.
What subject did you do?
At Warwick University - English and American Literature. Not what I‘d chosen
to do actually; I wanted to do English and Theatre, but I went through clearing,
not having been your ideal university candidate.
I went to Warwick University, which I enjoyed enormously,
although I spent more time in Durham because my boyfriend was there. I didn‘t make the most of it
academically, but enjoyed the time, apart from a couple of incidents, which
I think did mar it fairly significantly. One was that towards the end of
my time, I was developing clinical depression, and I really was very unwell
with it for some time, and was put on drugs that I think would probably be
considered inappropriate now; largely tranquilisers rather than uppers, in
any sense. And that spoilt things a little for me. And I also picked up
a very unpleasant virus, which I will never forget, because I have never looked
or felt so ill, and it was very non specific. The doctor at the time called
it a respiratory virus, so my respiratory system wasn‘t in any sense affected
by it, so I‘m to this day mystified by that diagnosis, but it was very memorable.
And I have wondered, since, whether that may have been the mystery trigger
to the diabetes that was to come later.
You hadn‘t got any diabetes in
your family then?
I was the first diabetic in my
family that we know of, but, of course, we don‘t know anything about my mother‘s
father‘s side of the family, so there could have been, I would say, an early
child death, as it would have been in those days; not recorded or not known
about. So that could be, although my mother is enormously anxious to stress
that there isn‘t any diabetes in her family. My father, likewise, we don‘t
know... we haven‘t been able to track anybody down. My mother was absolutely
convinced that one of my grandfather‘s sisters died of a wasting disease.
We‘ve been unable, entirely unable, to track down the sister who died, and
we think possibly, I‘m afraid, that she made that up; not consciously, but
she needed it not to be her family. Since I was diagnosed, my cousin became
diabetic during pregnancy, and didn’t lose it afterwards and is insulin dependant,
and her sister had gestational diabetes and no longer has it, but obviously
it‘s seen as a risk for type 2 in later years. But that‘s it. We don‘t have
that obvious link with anyone anywhere.
What did you do after you left
I didn‘t know what on earth I
was going to do actually, so I got offered a job by a friend‘s friend‘s father,
who was a director of Rothmans, and he was setting up - setting his wife up
in a little cottage in Wales with a Post Office attached, and they were going
to run the Post Office together when he retired. But she was making a beautiful
garden that she wanted people to visit, so they wanted someone to run the
Post Office for them. And it was a beautiful little village called Cwmbach
in South Wales, and I went there for a year and loved
it. It was a farming community, beautiful scenery; absolutely perfect environment,
I thought, for me, but, of course, no opportunities career-wise afterwards.
And I remember going to some dreadful sales interview in Swansea
or something, in the faint hope I could stay in the area, and not having the
faintest clue what I was doing or saying, and not getting the job and having
to return home to Reading. And then to a job in London as a trainee journalist, through connections I‘m sad to say;
a little bit of nepotism there. And I started on a trade journal, which was
deadly dull, but gave me solid training.
How did your diagnosis of diabetes come about?
It was rather strange really,
because I had no idea that I was becoming ill, other than the lingering depression,
which I was still fighting. I went to holiday in Greece, and I look back on the pictures, and I
was so incredibly thin it doesn‘t seem possible that somebody hadn‘t marched
me to the doctor’s. But since I had accepted that I was simply nice and thin,
I suppose it wouldn‘t be fair to expect anyone else to pick up on it. But
I was at work one day, and one of the secretaries said to me "you‘re
horribly, horribly thin now, you know, Jill?". And I was absolutely
terrified, because I realised it was true and that I‘d been in some sort of
denial about it. And, of course, thinness, with my lack of medical knowledge,
but the little that I had, made me think leukaemia or cancer, basically.
And it wasn‘t long after that - again a very singular event - I was thirsty
at work, and I rushed out across to the corner shop and bought myself the
worst thing, of course, in retrospect I realise I possibly could have, which
was a can of Coke, downed it in one, and was still feeling desperately thirsty,
and thought there was something wrong about… definitely something wrong.
And I wasn‘t completely ignorant of diabetes, although it was not me that
made the connection, because, the connection we had was that my mother‘s stepfather
developed diabetes type 2 when he was about seventy five, so we knew a little
bit about some of the classic symptoms. I still hadn‘t made the connection,
but I rang my mother and said "I don‘t know what‘s the matter with me.
Everyone says I‘m thin, and I keep drinking all the time", because by
then I realised, of course, I was drinking a lot more, and it sort of crept
up on me. And I went to see my GP, who wasn‘t the most sympathetic GP, and
pooh-poohed it a little, but nevertheless sent off a sample to the hospital,
and was very unimpressed with the result. I think - I can‘t remember how
they measured things exactly. The figure ten sticks in my mind - I was only
ten, my blood sugar was only ten; I think that was what it was, which was
not desperately significant, but anyway he‘d send me to the Whittington Hospital.
And I got to the Whittington Hospital and saw a very nice man, who said, very quickly put me through
a glucose tolerance test, which is a deeply unpleasant experience - drinking
a lot of sticky material and having blood tests done every half an hour, I
think it probably was, and confirmed that I did indeed have diabetes. And
I‘m not quite sure how they could judge this, but they said I was about a
fortnight off a coma, and it would have been very dangerous indeed. And I
was taken in to hospital the next day - that was September 1979 -
I stayed in for – unbelievably, looking back on it now - for nearly a fortnight,
where I was taught to inject an orange, and had my condition explained to
me to some extent, and given some laughable dietary advice. It really was
quite absurd the advice I was given, again in retrospect, but knowledge of
diabetes then obviously was more limited.
What was the advice you were
Well, there were all sorts of
things that people would laugh about now. And I actually finally got released
from hospital, because I‘d had enough of being in hospital for ten days, despite
a strikingly handsome young doctor who did make me feel perhaps it was quite
nice to be in hospital for a while, and they wouldn‘t let me have marmalade
on my toast. This was the final day and I kicked up terribly. I was very
fed up of being in hospital by then and I didn‘t accept that I couldn‘t have
a sliver. I mean, I think someone had said I could have a sliver and someone
else said "no, you can‘t have even a sliver of marmalade on your toast".
And, well, I made a fuss about it and I found myself at home the next day,
funnily enough, clutching something that my family will never forget, which
was some handwritten dietary notes on diet, which were almost illegible, totally
unhelpful, and left me feeling very much like you feel when you come out of
hospital with your baby; completely unable to cope, not knowing what on earth
to do without support around you. And having a salad that evening, thinking
it was sensible, and realising that I‘d put salad cream on it, and ringing
the hospital almost in tears, desperate because I‘d put salad cream on my
salad, and I thought I‘d have done myself some terrible damage. So actually,
my understanding of my condition was pretty minimal.
Can you remember any more about
the diet in those handwritten notes?
I think it was basically to avoid
sugar, and really to avoid it - not a question of understanding about refined
sugars and unrefined sugars, anything like that, just avoid sugar. And that
carbohydrate was important, and I think I had a very vague idea that one digestive
biscuit equalled ten grams of carbohydrate, but how that related to anything
else then I can‘t truthfully remember. And the business of the notes, actually,
is really rather down to my family, who to this day will say "can you
believe those ridiculous notes that you were sent out of hospital with?".
To me, it‘s all rather vague, because I guess I was coming to terms in my
own time with my condition, so some of those details are more vivid for my
family than they are for me.
What other education and training
did you get in hospital?
Not a great deal! And not very
impressive, I fear, if you look at it from a modern day perspective. I was
put into a hypoglycaemic state so I would recognise it another time, and I
don‘t think - that was a deliberate event, and I don‘t remember it being particularly
traumatic, just vaguely unpleasant, as indeed hypoglycaemia continues to be.
So, I think I probably did then know what I‘d feel like, and that was good.
But I also went into a hypoglycaemic state some point later, and I had to
have glucose intravenously, and it went under my skin instead of into a vein.
And that‘s one of the most painful experiences I‘ve ever had, next to child
birth I think, and a very apologetic doctor afterwards. And I was obviously
more severely hypoglycaemic then, because that really, really was unpleasant.
Apart from that and injecting into oranges, there was no blood sugars.
Blood sugar monitoring equipment didn‘t exist then, or if it existed it wasn‘t
something that was generally available, but obviously the hospital had it
and regularly took my blood sugars. To be honest, I can‘t remember the significance
of the numbers or being taught very much about that, and I certainly didn‘t
leave hospital with a machine anyway. It really was all going to be guesswork,
and it was guesswork for a long time until my parents bought me a machine,
which I remember was enormous and cost sixty pounds. And my friends laughed
because it was a birthday present, and said were they going to get me an iron
lung next time!
You can‘t remember which birthday
I think it might have been a
couple of birthdays later. The question was that they were available, but
at a cost, and it wasn‘t something that the hospital expected most people
would be able to afford to buy. I guess that‘s the reason.
So how did they expect you to
keep track of your blood sugars?
Well that‘s - looking back again
- that‘s quite incredible, because the only way you could keep track of them
was the blood test they took when you went into hospital for your checkups,
and that, of course, only told you what your blood sugar was at any given
moment. And it used to be very funny, because there‘d be a group of diabetics
- we didn‘t know each other - outside the clinic saying "no, bet you
haven‘t eaten a cake today… you should have seen my diet today - lovely rice,
some vegetables", and, of course, not what any of us were eating most
of the time. And we thought we were hoodwinking the doctors, and indeed to
some extent we were, because they didn‘t have anything else. Apart from,
of course… no that‘s not true is it? We had the urine tests - I‘ve missed
out something vital; that‘s what we had. We were taught how to pee on a stick,
recognise the change in colour - orange definitely meant we had too much sugar,
blue was a negative and was fantastic if you could achieve that. And we did
keep a record of those. We took those with us, but again, as everyone knows
now, that doesn‘t give an accurate indication of your control. It takes a
certain while to go through your system, so certainly if you peed on a stick
and it was negative, it didn‘t mean that your blood sugar wasn‘t a hundred
and fifty as you sat there at that time. So in terms of control, it really
wasn‘t very adequate.
Where was this clinic?
It was at the Whittington Hospital, which is a pretty grim old building, but with a fantastic
consultant, whose name escapes me - and it should come back to me, because
he is the nephew of someone very famous in the diabetic world. It may come
back to me - and he was very, very kind and very nice to me. And I think
they did very, very well, given the time and given that the hospital was not
particularly modern - I compare it with Addenbrookes.
look back in complete horror. There was rubbish piled up outside, it was
smelly and dirty, and very basic in many ways.
So what did they do wonderfully?
They were very kind. I think,
you know, I couldn‘t possibly comment on how adequate they were medically
- I‘m sure they were as good as the time allowed, but I remember the kindness,
and I remember my own GP at the time. I remember I‘d developed a cough, and
I went in because I thought I perhaps had lung cancer, and he said "it‘s
really not very likely that you‘re going to be diagnosed with diabetes and
lung cancer within a year, Jill". And he was kind as well, he was supportive,
and he did say - there‘s certain words that ring through from past times -
and he said "you do know you‘re going to spend a lot of your life in
clinics, don’t you? So you‘d better get used to that", but not unkindly.
What were your reactions to the
Well, I think probably my doctor
would say perhaps that I‘ve been in denial all my life, on the basis that
I haven‘t ever really reacted to it. My parents, my family generally, thought
– well, it sounds very big headed - thought I was amazing, I was fantastic,
because I didn‘t let it affect me. I didn‘t feel any grief about loss of
health and I felt very determined just to carry on, and that could have been
denial or that could have been positive thinking and getting on with my life.
People would have a very different interpretation, I suspect, of my approach.
But I certainly went on doing a number of things that I shouldn‘t have done,
which included drinking a great deal of beer. And I think I was pretty careful
with my diet, but as a vegetarian and aware of health issues generally, I
did try quite hard with my diet anyway, so that wasn‘t a major problem for
me. So overall, I can‘t remember being traumatised by the diagnosis. I think
life continued very much as it was. I didn‘t feel injecting was a desperately
appalling thing. I was determined to think it was like cleaning my teeth
- you know, clean my teeth twice a day, stick a needle in twice a day. It
wasn‘t as if it hurt after all, although looking back on the equipment that
I had at the time, that again is pretty laughable. I probably ought to mention
that my sort of training on that was pretty minimal.
I mentioned before, I‘d been shown how to inject into an orange, though quite
how that was supposed to help I can‘t imagine - it didn‘t really. But I was
also told how to look after this hideous huge glass syringe with a very menacing
large needle on the end of it, and basically it involved boiling it in water
in a standard aluminium saucepan, which I did regularly, but whether I did
it as often as I was told. I can‘t remember how many times I was told to
do it, I really can‘t remember. But I think there were two things, and I‘m
serious about both of them, although one of them is going to sound slightly
frivolous. I was madly in love with my doctor at the hospital. By the end
of the fortnight, you know, I wanted to impress him, I wanted to be seen to
cope, so that really was an issue. And the second thing is that, of course,
I was very relieved because I didn‘t have cancer, I wasn‘t going to die.
I had something that I could go on living with, and so, perhaps, that was
a lot to do with why I appeared to cope quite well.
How did other people react?
I can‘t remember many people
understanding enough about it. I think most people said "how awful,
you‘ve got to inject yourself. I‘d be terrified. I‘d die rather than inject
myself twice a day", and that really is about it. My family certainly
- I‘d left home obviously by then - never became very involved, and never
to this day really understand the disease, and I‘ve certainly felt some resentment
about that. I remember going home, and I seem to have to remind everyone
every time that I had to be told twenty minutes before the food was going
to be served, because I needed twenty minutes or half an hour, and they always
seemed to be surprised and not to have remembered it. And it seemed so important
to me, I couldn‘t quite understand why other people couldn‘t have grasped
those very basic things. I suspect my brother probably understands diabetes
very well - I expect he read every book ever written on it actually, but he‘s
very laid back and not desperately sort of hands on. But he‘s very, very
supportive, so he is there. But my parents, I think, perhaps they really
didn‘t want to know.
How did manage your diabetes
I don‘t think it impacted at
work at all to be honest, because I was on two injections a day, of animal
insulin then, of course, and so I‘d had my injection in the morning before
I came to work and had my injection after I went home. And I guess the people
around me had limited interest, and then began to just accept it, as people
do. That was part of my life and that was it. And it wasn‘t until a little
later that I met - a couple of years later - that I met the father of my children,
whose brother was diabetic, that I had the chance to talk to someone about
diabetes and what it meant, and someone who understood and knew something
about it, after all, most things are quite boring to other people after a
So how did your diabetes progress in your twenties?
My suspicion is that I was a
lot luckier than a lot of people, quite honestly, because it really didn‘t
impact very dramatically on my life until certain things went wrong, and they‘re
very memorable. The first was - I was on Rapitard at the time - and I was
at a boyfriend‘s house and I was coming home. And I hailed a taxi and I got
into it, and I couldn‘t remember who I was or where I lived. And I somehow,
as we... I don’t know, the taxi driver must have been enormously sympathetic.
He must have thought he had a mad woman in the back. But I sort of remembered
bits of the address, and yes, I definitely lived in Camden, I got that far, and then I can remember vaguely recognising
that I was in the right place, this was Camden Road. And somehow I got home, and realised
I was hypoglycaemic and ate, and was okay. It wasn‘t long after that that
my flatmate came in to find me working my way through my phonebook ringing
friends and telling them to "fuck off", and fortunately realised
that wasn‘t normal behaviour and rang a doctor. And I was taken into hospital,
where I stayed for several days, and my insulin was changed, and I can‘t remember,
but it was still animal insulin. And that wasn‘t very pleasant, because it
reminded me that it could be pretty serious and I did have to look after myself
a bit. And I also had had over that time, in no particular order, a number
of very unpleasant revelations/comments from other people. One of the worst
things was picking up a New Scientist, and I‘d really quite like to track
it down again, because I can‘t quite believe I could have understood properly,
but it said that a diabetic from diagnosis had about twenty years, and that
made me forty two. And I was at work, and I rang my brother up and sobbed
down the phone "I‘ve only got twenty years". And that‘s when, I
suppose, I realised that I could actually die from it - it was going to stop
life being exactly as it would have been if I hadn‘t had it, and that was
very, very grim indeed. But as I‘ve said before, I have an enormously supportive
brother, who pointed out all sorts of things, like that that was taking into
account people who abused their diabetes, who hadn‘t recognised that they‘d
had it for years, all sorts
of things, people who die from other things but happen to have been diabetic,
and put it in proportion. That was... he was great - he really, really did
help me, but since I‘m mentioning it, you‘ll know that it was a very grim
moment. And the other thing, I suppose, was - I can‘t promise this was very
early on - but I certainly was seen by a nurse to be pricking my fingers fairly
centrally, and she said "you mustn‘t do that", very angrily "mustn‘t
do that. Why are you doing there, it‘s supposed to be on the side of your
fingers?". So I said "well, I always do it there", and she
said "well, you mustn‘t do it there. You‘ve got to do it on the side
because you‘ll lose the feeling in your fingers, and then when you go blind
you won‘t be able to read Braille". And that was very unpleasant, but
almost laughable actually - sort of unpleasant but laughable - you know, get
this nurse off the ward, get her sacked and do something about it. Never
did, of course; never even complained. And the other life changing, and probably
the most life changing thing in the whole story of my diabetes, was me saying
quite casually to the consultant one day - I was twenty six, so yes, I do
know when it was - "should I think about having children?", because
it was something I knew I‘d very much wanted to do. You know "is my
diabetes going to stop me getting pregnant or make it more difficult, and
I‘m getting on a bit now anyway, aren‘t I?". And he said very casually
indeed "yes, I think, you know, if you’re going to want to have children,
you should think about it now, because after all, you‘ve got to consider whether
you‘re going to see them grow up", and that was shattering. I just remember
walking away. I had no support, no backup, no anything. No one saying "but,
you know, don‘t panic about it. That sounds like a dreadful thing to say,
but doesn‘t everyone have to think about the future and be, you know, realistic?
And isn‘t that why women don‘t have children when they‘re fifty?", and
all those sorts of things that might have made me feel a little bit better
about it. But I went home thinking "well, have children now, because
they won‘t have a mother when they‘re twenty unless I do it now". Not
a good moment.
Were you in a relationship in
which you could have children?
I was in a relationship where
I very much would like to have children, but certainly my partner of the time
didn‘t see the relationship in those terms.
And I think you could say that I was also playing the field. He wasn‘t making
any commitment to me, and I had a number of other boyfriends - none of them
serious enough from my point of view to want to marry or have children with,
so time was getting on, and I was beginning to feel quite anxious about it.
And the decision that I was going to be a single parent came upon me fairly
suddenly, I think. I introduced it fairly gently to my mother and father.
My mother was very accepting, my father looked stony-faced and disappeared
behind the newspaper, and my brother was very supportive and said "whatever
you do, I‘ll always stick by you" basically, not quite so sentimentally,
but more or less that was the message and I knew it was true. So I started
to think a little more closely about exactly how I was going to achieve motherhood,
and shortly after that broke up with my preferred choice as a father. And
looking back on that, life just seems very ironic, because he was the person
I mentioned who had joined the dreaded and boring trade magazine and who had
a brother with diabetes. And that is what drew us together, that the conversations
we had about that and him being sympathetic and supportive actually caused
that relationship to blossom. So again, even that‘s sort of down to diabetes
- some of the life changes that happened, in a very strange sort of way.
But he wasn‘t father or husband material - he always said that, and it was
true, but I was not interested in anyone else being a father. And, of course,
I also had to make a decision about whether it would be moral to just go ahead
and have a child anyway. And as time went on, and we had a fairly major split,
I started to wonder about sperm banks quite seriously, and one night stands,
and thinking how horribly sordid that seemed when you could love someone.
And even if they didn‘t want you and possibly not even the children either,
at least there was something there that was special from the beginning that
would make it all right, I suppose. And he was aware that I wanted children
very badly. And at that time I did an interview about planning to be a single
parent. And we split up briefly during the time when his father died, and
after that we got back, and the first thing I did was play the tape where
I said quite clearly that my immediate
were to be a single mother. And I asked him what he thought, and he said
he thought it was a very good interview and he never made any other comment.
And he never took any responsibility for contraception and nor did I, and
was highly thrilled to discover I was pregnant. By that time, I also knew
it was important to look after myself. I‘d got my diabetes under the most
incredibly good control. By this time we had much smaller machines, much
more accurate machines, it was all a lot less messy, and anyway, it was worth
it - I‘d do anything. I was really… you know, when I fell pregnant, I knew
that I‘d done it in the best circumstances. I was healthy, I wasn‘t drinking,
I wasn‘t smoking. And I told the father, and said how jolly happy I was and
off he could trot. He‘d done me an enormous favour and I really, really didn‘t
want anything from him, and he found that he really, really couldn‘t leave,
if you can not leave when you haven‘t been together, if you see what I mean,
but anyway. So I went through pregnancy under the care of Dr Yudkin, who‘d
been my consultant throughout my time in London
and my twenties, and he saw me through safely. I gave birth to Tom naturally
- very thrilled about that, because one of my concerns was meeting, in the
pregnancy clinic, a girl who had been diabetic rather longer than me, but
she‘d also been anorexic, and she wasn‘t going to be allowed to give birth
naturally - and this is very grim - because they felt, if she strained, that
she might burst the vessels behind her eyes, which were very vulnerable; obviously
one of the complications of diabetes and she hadn‘t looked after herself very
well. And I was appalled that a) that the reality of not looking after diabetes
having lead to something like that, and b) the thought that, you know, I might
not be able to do it myself naturally, because I‘d like to have a go at that.
But I kept enormously good control. They were very pleased with me. They
said they hadn‘t seen anyone with such low HbA1cs who hadn‘t spent most of
their life conked out on the floor. And I was induced, but gave birth to
a very healthy bouncing eight pound five ounces boy, and very thrilled I was
Well, by that time, various work
changes had taken place. I‘d left the deadly dull trade journal, been briefly
freelance in a similar sort of field, ie deadly dull, and then being asked,
or headhunted I like to think, to launch a rival deadly dull magazine, and
did that, and was a features editor on it for a number of years. And this
was still in London and leading up
to my decision to have a child. And when I finally decided that really was
going to happen, I left that job as well, and worked freelance for probably
about a year, up until I had Tom. I spent a year in London freelancing in
fairly grim circumstances really, because I went back to work two weeks after
I had Tom, which was madness, and had a nanny in in the flat looking after
him while I beavered away at the computer. And with no expectations of the
father, who clearly had been utterly over the moon the moment he was with
me during the birth and as soon as he saw Tom, and yet had no great desire,
I think, to become a family man. And eventually, on a walk one day, was very
moody, and I asked "what‘s the matter?", and he said "I suppose
we ought to think about getting a house together, for Tom‘s sake", rather
like saying, you know, wouldn‘t it be nice to have his teeth pulled out very
slowly and painfully. And I didn‘t feel really that I valued myself so little
that I‘d take that as an offer, and made the decision to... again, my brother
being very influential had suggested I came to Cambridge. He said "well,
you‘ve got a little boy", and he was living in a nice village with brilliant
schools, and he said, you know, "why don‘t you just move down here?".
And I had a number of very close friends, who didn‘t want me to do it, in
London, but also friends who weren‘t going to be closely involved with someone
with a young child, you know, for very good reasons; no criticism of that
at all. So, I decided to move. I also thought "sod you" to the
father really. And moved to a lovely village with a beautiful primary school
next door, and was coping fairly well. And the diabetes had been fairly well
behaved. While I was breastfeeding I had one incident, and the only one I‘ve
had in my entire life, actually, as a diabetic, and I know I‘ve been incredibly
lucky as far as that goes. I
been breastfeeding heavily, and had gone to bed and woke up to find that the
baby was crying, and there was something wrong with me and I had to get help.
And I had a flatmate, and I was trying to open the door and my hand wouldn‘t
connect with the door handle, and it was desperately frightening. And I screamed
for help, and my friend came in and called the doctor, who lived next door
- a very nice woman - and it took me about five hours to recover, and I had
a desperate headache. And I‘d been so frightened by it, and actually that‘s
an interesting point. I hadn’t any knowledge of how bad hypoglycaemia could
be, and those sort of things that it could do in the night if you went low
enough, slowly enough. So I rang the hospital, and the doctor said "yes,
that‘s absolutely typical. It‘s rather like having a stroke in terms of its
effects, and it would take five hours to recover, and it won‘t have done you
any damage". And I was a little bit more careful about eating a bit
more when I was breastfeeding after that. So that really brings me up to
being in Comberton with a child of one, and a new hospital - the very modern,
up-to-the-minute Addenbrookes - new clinic, new people, and a new GP, all
of which was very good news for me.
And what year is this?
1988, which is the year that
I switched - I believe it was when I became a patient at Addenbrookes - switched
from animal insulin to human insulin, and I was very relieved to do that.
And this probably sounds very foolish, but I have to say that briefly, when
I was told that I had diabetes and I was going to have animal insulin, as
a very strict vegetarian I actually flirted with the idea that I was going
to say "oh, I‘ll have to die instead", but, you know, I didn‘t,
obviously. But I was ever so glad to go onto human insulin and be able to
leave that behind me, because I think it was pork insulin and I wondered so
much how they got it, and I still don‘t know and I‘m glad I don‘t. But I‘m
on human insulin and have been ever since that time.
Did you notice any difference?
No, I don‘t think I did. I can‘t
remember what the reasons for putting me on it were, possibly just better
control. I mean, the other thing that I have to say is my HbA1cs had been
ludicrously good throughout my twenties. I didn‘t deserve it, because I was
not as good as I could have been or should have been, but I think I‘ve only
ever had an HbA1c of over eight once, and I know a lot of people work very,
very hard and give up a lot of things and don‘t achieve that. And I think,
you know, I have to appreciate that I have been very lucky, to date. The
human insulin didn’t really... it was all pretty seamless I think.
How much contact were you having with the medical profession at this time?
I think I was going to Addenbrookes
twice a year and having the yearly annual review with all the very detailed
checks. But although, strictly speaking, my diabetic medical care had never
come from my GP, when I came to Comberton I had a new GP, who understood something
that I don‘t think anyone I‘d come across in the medical profession either
understood, or certainly didn‘t feel they had the time or inclination to address,
and that was the emotional impact of being diabetic and what it meant to live
with it. And he was absolutely wonderful, and has been for all the time I‘ve
lived here. He‘s always understood that and he‘s been the only person who
I think has, so I feel very grateful to him. The hospital were brilliant
medically. They did everything they could to help - they were good with advice,
with support, in sort of medical terms, but the only person who understood
that a diabetic never has the luxury of talking about what it‘s like to be
diabetic was my current GP, and to him I owe an enormous debt of gratitude,
I really do.
How did he show this?
He asked me... He was intuitive.
He asked me leading questions. His starting point was always "well,
life is pretty tough because you‘re a diabetic and you can‘t escape that,
and it impacts on everything", and constantly telling me not to be hard
on myself, and because I was carrying... I did have a burden and that I had
to allow myself that, and I wasn‘t being self indulgent, you know, "just
relax, ease up a bit on yourself, you know, you‘ve got to think of something
every minute of every day". And I suppose that‘s the key, that‘s what
I really want to say, that what diabetes means is that. It means never, ever,
ever, not for a second, being free of it, and that‘s what he was talking about
and that‘s what he knew intuitively. When you‘re diabetic it’s like that
horrible feeling, everyone must know I‘m sure, when you‘re going to a party
when you‘re sixteen and you haven‘t done your homework. And you do enjoy
the party, you know, it‘s great, but you know you should be doing your homework.
And it‘s there at the back of your mind, and it‘s a slight heaviness somewhere.
There‘s something that I can‘t completely free my mind of, so I can‘t really
enjoy myself one hundred percent, and I‘m afraid I think diabetes is like
Tell me about the birth of your second child.
Natasha‘s birth was a very different
story. Although I‘d had reasonably good control since I came to Comberton
- I‘d only had one incident once driving a car when I suddenly realised I
didn‘t know where I was. And it turned out I was in my own street, but I
didn‘t know where I was and felt very frightened, very panicked, and came
home. And clearly my control wasn‘t all it might be. And I had various other
pressures; I was working as a freelance, I had a little boy at home, a father
who came at weekends and was very loving but not desperately supportive, so
there was a lot on my plate, and I think diabetes by then was starting to
take very sort of third, fourth… You know, in the list of priorities, it
was slipping quite dramatically. And when I fell pregnant with Natasha I
hadn‘t been well controlled, and I was anxious about that, and I wasn‘t sure
whether I was going to be able to go through with the pregnancy. I had great
fears that I might have damaged her. And decided, obviously, that I would
keep her, but I had an enormously difficult pregnancy. I didn‘t feel like
eating any of the things that were good for me; I only wanted sweet sickly
things over things that stopped me feeling sick. I got incredibly good care
from Addenbrookes. Again, you could not fault the medical professionals -
they were brilliant, but unfortunately, in looking after my diabetes, they
did miss something pretty significant, and that was that I was fairly dramatically
anaemic. And that was actually why I was ill throughout my pregnancy, but
we didn‘t know that until afterwards. So my blood sugars weren‘t good. I
was doing four blood sugars a day - I did stick to what I was supposed to
do, I didn‘t abuse it. I did my very best, but I found it enormously difficult.
I slept most afternoons, I never felt well, I felt sick - constantly I felt
sick for nine months, and it was a very hard time. And when I gave birth
to her, she was a typical diabetic woman‘s child. She was cherub-like, she
was puffed, and that‘s sad. I don‘t think I really allowed myself to realise
that until a bit later, but when I think of the comparison between Tom, who
looked absolutely like a normal little baby, and ‘Tash, who was definitely
chubby in not such a healthy way, it was sort of more slightly puffiness.
And I had a blood transfusion at that time before I was allowed home. And
I came home not feeling very well and not feeling very able to cope, and thinking
the last thing in the world I needed was diabetes to deal with as well. So,
it wasn‘t a good time. Although, obviously, it was a great joy to have her,
I really wasn‘t very well.
was it like being mostly a single parent of two children?
It got harder and harder. Of
course I‘d been totally unrealistic about it. I really do think I was an
enormously patient mother for the first few years with Tom, and much less
patient with Natasha and both of them as I got older. And I found it much
more exhausting, and found trying to fit diabetes in… I mean, you know, to
be a really good diabetic you need to have a really stress free routine life,
and who‘s got that? You certainly don‘t have it when you‘ve got two children.
So, I didn‘t miss injections, that was something that happened much more recently,
I didn‘t ever miss injections, but I did feel that support was something I
needed and hadn‘t needed before. And felt that it was a bit hard on Tom,
who, by the time ‘Tasha came, was four and was being told… if you look on
his bedstead, my brother‘s number is engraved on it, because if Mummy wasn‘t
well or if he couldn‘t wake Mummy in the morning he was to ring Uncle Michael.
And he was brilliant actually, he really did take on. You did feel absurd
that, you know, you could rely on him, but it didn‘t feel right that he carried
that responsibility. And I guess there I did feel some resentment to the
world at large about that.
Were there any times when he
had to ring Uncle Michael?
No, he didn‘t actually. But
I remember a very painful day when I hadn‘t been very well, that‘s right,
I‘d been vomiting, and, of course, that‘s a really joyous experience if you‘re
diabetic - very difficult to control and know what‘s going to happen next
if you‘re throwing up. And Uncle Michael had said "now you will, you
know, keep an eye on Mummy, won‘t you? You will look after her?", and
he said something to the effect of "no, don‘t want to", or something
that showed that too much responsibility was on his shoulders, or at least
I felt that… he might have just been saying "no, don‘t want to"
because he would have said that whatever Michael had said, but of course I
didn‘t feel that. I felt he said it because he had too much on his plate.
How did your diabetes progress through the 1990s?
Again, I think I‘ve been very
lucky, it hasn‘t been particularly problematic. And there have been times
when I‘ve been very frightened briefly by symptoms that I‘ve connected with
- wrongly, as it turns out - with diabetes. One of those was when I got a
lot of floaters in front of my eyes and went to the doctor in a panic about
it. And he realised why I was in a panic about it – again, of course, didn‘t
need to be told about that - and sent me very quickly to Addenbrook‘s. And
I had the most incredibly thorough tests that went on for hours on my eyes,
and, at the end of which, the doctor said something - it‘s quite interesting,
actually, how often people say something in this vein - she said, you know,
"you‘ve had diabetes for fifteen years", whatever it was then, "do
you realise how lucky you are that you haven‘t got any complications?".
And I wanted to poke her in the eye and say "do you realise how lucky
you are you haven‘t got diabetes?". That‘s something I‘ve, you know...
it‘s a recurring theme, because a very close friend of mine once said, you
know, "do you realise how lucky you are to have had two children without
complications, ‘cause of your diabetes?". Well, "yes, I do"
on one level, but I kept schtum, but I had some fairly rude thoughts about
that as well, because I didn’t think it was the most sensitive thing that
anyone had ever said, because they obviously hadn‘t thought beyond that into
how I might feel. So, I did really very badly want to say "yes, but
Ann, you know, I don‘t feel very lucky having diabetes actually".
And why had you got floaters
in your eyes?
Apparently we all have floaters
in our eyes and sometimes you get more aware of them. They never go apparently,
and I‘d swear they had, but I‘m told they never go. It‘s a perfectly normal
process of the dreaded ageing. And perhaps I was stressed and more aware
of them, and perhaps, you know, this lurking feeling - probably most people
have an idea of what their greatest fears about diabetes are, and certainly
one of mine is damage to my eyesight. So I only have to have a slightly blurry
day or something odd, and I think "oh God, is it an eye haemorrhage,
is something going to happen soon, is my luck going to change?" I guess,
because I‘ve not got complications. My kidneys are functioning well, I haven‘t
got any neuropathy in my legs, although I‘ve got reason to think that changes
are afoot, if you‘ll pardon the pun, on my left leg there, but that needs
looking at some other time.
So no complications?
No complications to date.
Tell me about your daughter being diagnosed with diabetes.
Natasha was diagnosed in June
1999. There wasn‘t a lot of warning again. It‘s something I‘d always feared,
but not as much, perhaps, as people might expect. It wasn‘t something I was
looking out for desperately, although Tom would probably say that I‘d attacked
him every time he had more than one drink a day. I‘m not aware of that, but
he has joked that every so often when I say "oh, having another drink?",
he‘d say "yes Mum, yes it is my second of the day" and "no,
I don‘t think I‘m a diabetic" and "yes, I will do a finger prick
if you want me to", but I wasn‘t aware of that. I was never aware of
being overly concerned about the possibility of them becoming diabetic. It
was a very background issue, but I think it needed to be, because I don‘t
think I could have gone ahead and had children if I thought it was very likely.
And my need to have children was desperately strong, so I think ultimately
I was pretty selfish and decided to stick that bit of possible knowledge on
the shelf. So, when Natasha, who‘d been a little bit on the chubby side always,
definitely not fat, got a little thinner, I thought how lovely it was, because
she was getting her sort of young girl’s shape. And then, she often still
slept with me, and I noticed her getting up a couple of times to go to the
loo at night, and rather than doing a test or taking her to the doctor or
a finger prick, I delayed knowledge. I so desperately didn‘t want it to be
true that I actually - it seems absurd now - I actually wrote to her teacher
at school and said "has Natasha been asking to go to the toilet more
regularly?". And this is totally illogical, because I could have resolved
the whole issue in, you know, ten seconds with a blood sugar, but I didn‘t.
I chose... I just couldn‘t face it, I just so couldn‘t face it. And I just
knew anyway. It‘s no good people, you know, saying… I did know, I just knew,
but I didn‘t want to. And the teacher wrote back and said "no problems
at all", and I thought "yes, it is, though, isn’t it? I‘m being
silly, I‘m being neurotic". And then one night she wet the bed, and
to my e-mail, and e-mailed... to my computer, sorry, and I e-mailed a friend
in Australia, and said "please,
please, please be there. My daughter‘s diabetic - I know she is, I just know
she is, she‘s wet the bed". And I knew I couldn‘t ring anyone else,
but she was going to be there I thought, but she wasn‘t. And I stayed up
all night, and at about
I don‘t think I rang the hospital, I think someone rang the hospital for me,
and - yes they did, the woman did - and said, you know, "we‘ve got a
newly diagnosed diabetic here". And they said "come in in the morning",
not get anyone out or do anything at all, which again is interesting because
it could have been crucial, I would have thought. But I‘m not... my medical
knowledge isn‘t good enough to really confirm that, but I thought it was a
little bit lax. And I took her into the hospital and I begged the nurse to
tell me that there was some other reason why she had... that she could have...
some other reason there could be that she had sugar in the urine, and she
said "well no, not really". I knew that, of course. But again,
I‘d been very lucky, because I‘d phoned a friend, very close friend, who‘d
come round and flung her arms round me and said "I‘m coming to the hospital
with you", and we‘d gone together. And we‘d sat in complete horror because,
of course, we were surrounded by very sick children; children without any
hair, oncology patients, and that was very traumatic. And it was also part
of the coping process with Natasha‘s diagnosis, because in the way I‘d thought
"thank goodness, you know, I haven‘t got cancer", here I had a little
girl who‘s incredibly healthy, and so she‘d wet the bed and so she had sugar
in her urine, and I knew what they were going to say, and indeed they did.
Very shortly afterwards they told me she was diabetic, and it was very grim.
And people were very different in terms of how they talked to me, and I really
was very much at sea, apart from the fact it was all dealt with very quickly.
They started insulin that day, they were almost going to let her out the same
day, but decided it wasn‘t quite how they‘d like it - they‘d just keep her
in overnight. So they kept us in overnight, and I drove home while Bill held
the fort, and sneaked in a bottle of lager to get me through the night, which
it did, it helped. And the next morning they showed her - again, I think
she was shown on an orange what she was going to have to do. But I walked
out with her, and it’s a very hard moment when your child says, you know,
something to the effect of, you know, "how many of these am I going to
have to do?", and you‘re just stuck thinking, well, you can‘t think it‘s
for ever, you just can‘t. At that moment in time you can‘t think it‘s for
ever, because it would be totally unbearable, so I thought, what you have
to think is "well, at the moment it‘s forever, but maybe it won‘t be".
And we walked,
out, and truly my thought was "thank God it‘s only diabetes", because
I‘d seen enough in that time to know I was a very lucky woman and she was
a very lucky little girl, so. And we came home, and like people always say
children are, she was really, really very good. We got to - I think this
was midweek - and we got to the weekend and her best friend Lucy said "oh,
can you come round for a sleepover?". And I said "well Natasha,
of course you can‘t, can you? Why can‘t you?". She said "well,
I‘m going to do my own injections then", and I said "oh really,
you‘re going to have a practice tonight to see if you can do it then?",
and she said "yes, I am". And she wound up the pen, stuck it in
her stomach, and said "there, I can go to Lucy‘s can‘t I?", and
I said "yeah, course you can, off you go, bye!". And she shortly
after that started doing her own blood sugars, although pretty reluctantly,
and it‘s a fight day in and day out. She doesn‘t like doing them. They hurt,
she’ll only use her thumb, she really, really needs to use her fingers now.
She was over injecting on her stomach, until recently when I found the key,
and said "oh well, you know, don‘t we both get sort of a lumpy tummy?
You know, what with it being summer and everything ‘Tash, and bikinis, don‘t
you think it would just be nice to have a flatter tummy?". And that
was it, injections in the bum started immediately. So she‘s now doing that,
which is good, so there‘s a sort of rotation of injection sites, but not what
I‘d like and not what any of us would like really, and not enough blood tests
and not brilliant control. But incredible support from the hospital, incredible
sensitivity. I was told very useful things, really key useful things, and
I just go down on my knees and thank some people, different people, who have
said different things. The first was a doctor who - I don‘t think he was
the senior doctor - who was standing around the bed, and said to me "of
course, in some ways Natasha will be healthier than other children because
she‘ll have a sensible diet". I can‘t tell you how I‘ve clung on to
that. It was the best thing anyone in the whole world could have said, you
know, something positive. And he found it to say, and it carried me, again,
it carried me through.
your daughter was diagnosed in 1999 and you were diagnosed in 1979. Can you
compare and contrast what it was like for the two of you in twenty year gap?
Yes, I think I can. I think
it‘s something I do all the time with Natasha to give her some idea of what
the next, well you could say twenty years would bring, but one doesn‘t say
that any more because technical and medical advances are happening much, much
faster. So I tell her the stories, and the comparisons are enormous. I mean,
I started with the glass syringe, the huge needle, and boiling it in a saucepan,
and she‘s got quite an attractive little pen. I mean, the manufacturers have
gone to some effort to produce something that looks fairly cool, and you just
wind it up and stick it in. It‘s got a tiny needle on the top and you don’t
have to wash it, and you don‘t have to do anything really. And when I was
first diagnosed I had that foul smelling whatever it‘s called, that sort of
surgical spirit stuff, to rub on your skin, which I think they later discovered
made the skin hard and therefore wasn‘t at all useful. And anyway, you don‘t
do yourself any great… you know, there’s not enough germs on the skin for
subcutaneous injections to be a problem. But she hasn‘t got to do any of
that, no preparation of the skin beforehand. And I could only control my
diabetes by how I felt, certainly in the early days, whereas, if she so chooses,
which is another matter of course, she can check any minute of the day. If
she feels a bit high, a bit thirsty, a bit low, a bit wobbly, she can... and
it takes five seconds on her new machine, whereas it took quite a long time,
as I remember, with my first huge cumbersome machine, it took a couple of
minutes or something. And lots of blood, and that‘s actually very key as
well, because I appreciate this, the fact that you have to draw the tiniest
tingiest bit of blood to produce your blood sugar result. And that‘s very
important for kids of course, whereas I used to have to half bleed to death
on the stick to get my results. And forever you wouldn‘t get enough and you‘d
have to do it again, and there‘d be blood everywhere and over the machine,
and, or you hadn‘t got enough and you had to stop it and start again. It
was a desperately fiddly, horrible thing. You certainly wouldn‘t be doing
it at work or anywhere in public. It was an ordeal and now it isn‘t, apart
from, of course, psychologically for her. So that‘s a big difference. And
obviously I spent a long time in hospital, which was a pointless exercise,
because you don‘t know how your diabetes is controlled when you‘re lying in
bed. You‘ve got to be doing, running around and jumping and doing everything
else, getting over excited, and leading a normal life to know
how you‘re going to control it, so her overnight stay was just right, and
it meant her control was achieved quite quickly. And her honeymoon lasted
about the same time. I think mine might have lasted over two years, but hers,
you could see her insulin demands increasing fairly rapidly after the second
year. Apart from that, I suppose attitudes, attitudes have changed in...
oh, I don‘t know if attitudes have changed. I think there‘s more knowledge
about, but having said that I can still be stunned by people‘s ignorance,
and, of course, if you‘ve got a condition and you know a lot about it, which
you have to with diabetes, you just forget that people still think "oh,
you mustn‘t have sugar must you?", and that‘s about it. But ‘Tasha‘s
school, who were pretty grim to begin with, got a new Head who got everything
sussed and sorted, and got her to give a presentation on it at school. I
mean, that was so important, such a brilliant... it was a stroke of genius,
it was an absolute stroke of genius. Because she‘d... obviously she‘d seen
me injecting, and she‘d seen diabetes could be a way of life, and we don‘t
hide it, and we, you know, sometimes in a restaurant I say "oh, I can‘t
be bothered to go to the loo. Sod it, they don‘t have to do it, they don‘t
have to look, I‘m going to inject anyway". So she‘d got the feel that
it was nothing to be ashamed of, and for god‘s sake, you know, children so
badly need to feel that it‘s just a part of life and they don‘t have to be
ashamed of it. But she‘d had some very grim experiences at school, being
told she couldn‘t be hypoglycaemic because she hadn‘t been running around
when she was nearly on the floor, being aggressive when she was hypoglycaemic
to the Headmistress, and the Headmistress going mad at her, and of course
making it a thousand times worse. And she‘s a timid little thing actually,
so why the Headmistress wouldn‘t think that there wasn‘t something wrong when
this timid child told her where to get off sort of thing; quite ludicrous.
So I‘d had words with her about that, but it didn‘t improve. And then we
got a new Head, who said... oh, they didn‘t want to take her on a school trip
either, that‘s right. Her teacher said, you know, he didn‘t want to be worrying
about her at night, sort of basically, and perhaps I‘d like to come as well.
Well that would have defeated the whole point, and so I stomped into the Headmaster‘s
office and promptly burst into tears, and he said "there, there",
and the next thing you knew, ‘Tasha was giving a des…dem… to the whole assembly.
This little timid little girl was showing them the equipment, how she injected.
The whole class was standing up. The headmaster was saying "where‘s
your pancreas everyone? Point to you pancreas!", and the whole of the
assembly was pointing - usually in the wrong place, but anyway - to where
they thought their pancreas was. And little hands were going up, people wanted
to say things, and I suspect they wanted to say "my mum is diabetic"
or "my auntie‘s diabetic" or something. He didn‘t take questions
until the end, but ‘Tasha had to ask some questions to see if the kids knew
the answers, and they did - they had listened. And it was so, so good for
her and increased her confidence in all sorts of ways. And she‘s got wonderfully
supportive friends, who nag her and tell her off and support her and look
after her. And that is, I suppose, a long, long way of saying things have
changed, because the people around, the kids around and their parents, and
their preparedness to invite her round. I mean, all the parents know that
she‘s been in a diabetic coma twice, which is another very dramatic business.
They know that‘s happened and the ambulance has had to be called, and they
still have her round at night. So that‘s a change in attitude. I mean, obviously
I can‘t say what it would have been like if I‘d have been a diabetic child
twenty years ago, but certainly it wasn‘t something people knew very much
about or gave you a chance to talk very much about, unless they were quite
special, quite different.
Can you tell me about your daughter‘s diabetic comas?
Yes, they are, well, the two
most significant are the most terrifying aspect of her diabetes. I should
say that we‘ve learnt a lot about children‘s diabetes from other children
as well. Tom‘s got a friend whose cousin is diabetic and ‘Tasha has met up
with her, and they‘ve had a good moan together about blood sugars and about
what they don‘t like doing and what they do like doing. And they send each
other letters with needles sticking in their bottoms and "I hate diabetes"
and things like that written across them, which, you know, which is great
because, you know, why shouldn‘t they? And they can say that to each other,
and they really understand in a way other people can‘t, so that‘s really positive.
But that particular little girl just falls off the back of chairs and things
in comas. She‘s taken from school by ambulance to hospital on a very regular
basis. She‘s got very brittle control, through no fault of her own, just
a metabolic thing. So ‘Tasha‘s got together with her and learnt… we know
what can happen there, things can change very dramatically. She made a friend
over the internet initially with a little girl called Natasha, and she was
absolutely thrilled. Thought it was really spooky because this girl was called
Natasha, she had diabetes, she had another brother of the same age, and she‘d
been diagnosed at the same time; all the sort of marvellous coincidences that
kept them friends for weeks. Of course, you might imagine, as children are,
she moved on, they both moved on. And since then she‘s been on a diabetic
holiday, which is a great idea, but she was very resistant the first time
it was suggested. She said "why would I want to go on a diabetic holiday?
Why would I want to be with other diabetics? Why would I want to talk about
diabetes? You know, isn‘t it enough that I have to do as much as I have to
do?". And I totally supported that, in my ignorance actually, because
I felt like that about support groups. I thought "for god‘s sake, you
know, why would I want to spend any more time thinking about diabetes?",
but that was a very unhelpful… My brother has said all along I should join
a support group, and I should have done. And I should have been more encouraging,
instead of Natasha reinforcing my own views on the ‘sod diabetes campaign’;
I should have seen the benefits. But she did come round herself the next
time. She was saying "well it might… you know, it’s doing all this marvellous
canoeing and stuff, so, you know, even though it‘s a diabetes thing, perhaps
I might be prepared to go". And she did and had a fantastic time, and
made friends with another three or four kids quite closely. And they all
have different problems and different things that they love and hate. And
they all came to stay here, and it was utterly hysterical if anyone had looked
through the window, because come teatime there were five of us shooting up
in various parts of our anatomy, surrounded by all the paraphernalia and giggling
like mad, and comparing our blood sugars and taunting each other because they
were too high or too low or something. Just generally teasing each other
and getting on with it. And that was a good thing, that was great fun, and
helped her along the road, I think.
then, your daughter had learnt about diabetic comas, but tell me about her
Yeah, she‘d heard about them,
because this little girl, as I said, used to fall off the back of chairs and
things. But she hadn‘t had any problem with them, until one night I was woken
up at three o‘clock, as she was, by then she was in bed with me nearly every
night, and she was fitting. And it was absolutely terrifying because I‘d
never seen a fit, I‘d never seen an epileptic fit, and her face was contorted
and saliva was running out of her mouth, and she was the colour of... it was
just a hideous unbelievable whitey green colour, and she was rigid. No, I
didn‘t know what to do, I really didn‘t know what to do. I would liked to
have imagined I was a sort of coping mother, and maybe if it had been somebody
else’s child I could have done something more useful, but I totally went to
pieces. And if it hadn‘t been for my son, who’s done the journey with ‘Tasha,
and has even said in the early days "oh, isn‘t a pity I‘m not diabetic
too, because then, you know, I‘d be really good about it and sensible, and
I would teach her and show her, and it would be easier for her". It
makes my heart plummet dreadfully when he said things like that, but he‘s
really gone along the whole journey with her, and I just screamed for him.
And the first time this happened he was fourteen and a half I suppose, and
by the time he came up she was out completely. She‘d stopped fitting and
she was lifeless, it was just horrible. And I ran down the stairs and rang
the ambulance, and he was rubbing Hypostop into the outside of her cheeks;
we knew we couldn‘t put it inside her mouth for fear of choking. And I rang
the ambulance because I couldn‘t be with her, and he could, which is still
to me is extraordinary, and it‘s still true, I‘m afraid. So the ambulance
came and they stuck the needle in her, I mean had the Glucogen - I had it
myself, I could have done it myself if I could have done it, which I couldn‘t.
The needle, it was so huge, and in my mind I‘m sure it was even bigger than
it actually is, but it‘s a nasty needle anyway. It‘s a lot thicker and longer
than most of the needles any of us are used to dealing with. And it took
her a very long time to come round, and even given that it was night time
and everything seems more traumatic and
then it was a long time. I think they timed forty minutes until she was properly
round, which is not good. And they were marvellous, the paramedics, and they
said "well, I don‘t think she needs to come into hospital", which
was great, and they said "we‘ll just sort of check her. What‘s the name
of your dog Natasha? ". And Natasha had been trying for ages, she‘d
been smiling and laughing as she was coming through, but she couldn’t say
Barney, she couldn‘t get her mouth - she couldn‘t get the connection. It‘s
like I couldn‘t touch the doorknob when I was so badly gone, I couldn‘t coordinate.
She couldn‘t get her brain and mouth to coordinate, she couldn‘t say Barney,
and of course her animal - she loves her animals desperately, she really wanted
to tell the paramedics about them, and she couldn‘t. She was smiling and
laughing, giggling with them, but she still couldn‘t speak, and she said "well,
we can‘t go until you speak", and as they started to move out of the
door she said "bye-bye" and waved. They said "that‘s it, we‘re
off. See you Natasha", and went. And then it wasn‘t very long after
that that she had another coma, very much very similar. Again I couldn‘t
cope with... I did try, I did try the injection. I tried because Tom encouraged
me, that‘s what it was. Tom said "I will do the injection, Mum",
and I said "I can‘t possibly let you take that responsibility at fifteen,
I‘ve got to do it", and because he was going to do it if I didn‘t, I
sort of tried, but I made a complete cock-up of it. The needle bent in her
backside, it bled, it, you know, didn‘t help. And I ran down and said "it‘s
no good, I‘m going to call the ambulance". And the ambulance came and
they gave her one, and she came round a lot quicker this time. And on the
first occasion, she actually went to school the next day, which seems outrageous,
but that was typical of her - kind of "well, that‘s behind me",
not that she knew a lot about it, I suppose, in a sense, but it didn‘t have
any lasting effect. And the second time, she didn‘t feel terribly well and
so she did have a day off school, and I think that‘s the only time she‘s had
a day off because of her diabetes. And then we all went, well Tom and I went
to be taught how to do it and to overcome our fear, well my fear, of sticking
the needle in, and making sure that... And they said Tom could do it if I
can‘t do it, and I‘m afraid I‘m fairly sure I still couldn‘t do it, but I
could let Tom do it. And he‘s very anxious that I would let him do it, and
the medical profession are happy for him to do it because he‘s been shown,
so that‘s where we stand on that. A couple of other fairly serious hypoglycaemic
incidents, one in the morning when she was suddenly crying in the bathroom
for no apparent reason, and I realised she was fairly far gone and she couldn’t
stand. And her friends all came and held her up and we got some glucose in
her, and she was okay in the end. But they are very frightening and dangerous,
and could be fatal.
Have you noticed any changes in the way doctors and nurses treat you over
the period that you‘ve had diabetes and your daughter‘s had diabetes?
Well, I haven‘t had anything
grimly insensitive said to me in the last ten years, but in terms of how imaginative
they are about giving you the opportunity to talk about what is as important
as the medical aspects, and that is the fears you have and what it‘s like
to live with it, no, there‘s been no improvement on that front. I think my
GP‘s a gem and one on his own.
And how are you feeling now about
your daughter‘s diabetes?
I think we‘re living it and taking
it day by day. And we recognise that, you know, there‘s plenty more challenges
and hurdles to overcome, and she‘s going to be a teenager and it‘s going to
be more difficult to control. So on that front, I mean, we‘re just taking
it as it comes. The difficult thing, of course, for me to come to terms with
is the genetic guilt, because her father had a brother who was diagnosed at
twenty eight with type one diabetes, and I cannot believe that, even twenty
years ago, I could have been so ignorant as to not recognise that I was putting
pretty heavy odds, or heavier odds, on one of my children being diabetic.
So that is a big issue and there‘s no way out of it. And she did once say,
only once she said "it‘s your fault", but that was one of the most
devastating things that‘s ever been said to me, and I cried so hard she never
said it again, bless her, but, and Tom told her off very soundly. But she
had made the connection. That‘s difficult. And the people around me have
made me feel differently about diabetes, some of them through being incredibly
inspirational. I had a friend who died at the age of eighty, one of the first
diagnosed diabetics, first people to go on insulin, and she was diagnosed
at eleven, and died of a heart attack, a short five days after her eightieth
birthday, in fact. And she‘s the person, when I have to remember - when I
think about what the future holds, most particularly for Natasha, I think
of that lady, and how a) she survived to a great age, and b) she lived her
life to the full. And I try hard not to remember my other friend, who‘s thirty
five and abused his diabetes appallingly all through his teenage years, and
is on a double kidney and pancreas transplant list at the moment, because
there are two opposite extremes, and it‘s really going to be down to her.
And that all sounds very negative, and it‘s very easy to get, when you talk
long enough, and you don‘t get many opportunities to talk about diabetes,
but when you start to talk about it, it‘s very easy to become negative, but
there are most definitely lots of positives. I‘m grateful, I‘m really grateful
to have had a chance to realise earlier than most of us must do, unless we
are very unfortunate and come across death early in our family or someone
close, that I‘m not immortal and that time can be short, and you do need to
get on and do things while you can do them. And that is such a wonderful
thing, and I don‘t think I‘ve wasted time at all, and I have diabetes to thank
for that. And I also feel fairly positive about the future, because I really
do believe we‘ve seen enough changes over twenty years to expect that the
life of diabetics is going to improve beyond belief, that my daughter‘s future
is much brighter than even mine, and I don‘t feel despondent about mine.
And would you like to talk too about positive changes?
Yes, I think that there have
been a number, but one of the most important is an acceptance by the medical
profession now that the patient really does know best. And the idea of an
expert patient couldn‘t be more applicable to a disease than it is to diabetes,
and they actually accept that now. And, I mean, we all knew that that was
true, even years ago, because when I had Tom, I remember only too clearly
wandering around the hospital attached to a drip for days after giving birth.
And I knew I didn‘t need to be, because I had my blood monitoring machine
with me, I had food at my bedside, I knew what I was doing, I did not need
a drip. Could I persuade anyone to take me off the drip? No, because they
hadn‘t got the diabetic expert there, and everyone was terrified of us. The
nurses didn‘t have the knowledge, and that wouldn‘t have mattered as long
as they didn‘t mind saying "well, actually we don‘t have the knowledge".
Now they say it. They smile, they‘re not arrogant, they say "well, you‘re
the diabetic", and that‘s how it should be.
Has diabetes prevented you from
doing anything that you would have done otherwise?
No, I think I can honestly say
that I‘ve lead my life exactly, as far as anyone plans to lead their life,
I ever did. In terms of work, I‘ve done exactly what I wanted. I‘m a journalist
working in the health field and education fields now, and I travel with my
job. I‘ve had children and safely. There‘s really nothing that I can think
of that I haven‘t been able to do. I didn‘t want to join the army, I didn‘t
want to jump out of a parachute, and I think that‘s about the only two things
that I‘d be prevented from doing. I travel around the world on holidays,
and with sensible precautions that‘s no problem whatsoever. Of course, the
thing that‘s most important to me in the world is having children. That‘s
my greatest achievement and my greatest joy, and diabetes hasn‘t stopped me
doing that and enjoying every minute of having children, and it‘s not going
to stop me doing that in the future. I‘ll have seen them, I‘m sure, safely
grown up and on their way, and that‘s really, really all that matters to me.