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Person with diabetesBorn in Rochester, Kent in 1948. Diagnosed Type 2 in Birmingham in 1980
Overview: Shirley Jones` parents had little money to spend on food and she remembers eating bread and jam `many, many times`. She married at 19, divorced, married again at 21, and then her second husband left her to bring up two small children alone before she was diagnosed with diabetes, aged 32. She was recruited into the UK Prospective trial for Type 2 diabetes, but rapidly became insulin-dependent. Until recently, she ran a pub with her current partner. She is now on kidney dialysis.
I was one of three children:
one sister, one brother. Me Dad worked on the buses all his life; me mother
was a housewife - never went to work.
Where did your Dad work on the
In Maidstone & District Buses
on the Isle of Sheppey, and he went from a driver up to a inspector, and then a suit job, which he enjoyed quite a
lot. Unfortunately, he died six months before he was due to retire. And
my mother, she died of cancer a couple of years before him.
Did you feel you were fairly
well off as you were growing up?
No, not at all. We were quite poor
really. We had one holiday, I think, in the time that I can remember, and
that was at Margate. We had bread
and jam many, many times, but we were well looked after, you know. They loved
us, really, a lot and they were good to us, but we weren‘t at all rich.
Did you have quite a happy childhood?
Yeah, very happy.
What was school like?
I liked school; I always did.
And we did our A Levels and things like that. Well, I can‘t remember what
it was called when we was at ... Eleven Plus - took the Eleven Plus. I passed
the first part, but unfortunately failed when we went for the interview; I
don‘t know why to this day. I always felt it was because my Mum and Dad weren‘t
well off and good enough for it.
So what sort of school did you
Just a comprehensive school;
girls’ school. Very good at athletics, I was. Yes, I went for the school
high jump and the long jump; had me name in a plaque on the wall, which was
What other subjects did you like?
I liked everything; I really
did. I loved school. I hadn‘t got a problem with school whatsoever.
Did you get any qualifications?
Probably because I wasn‘t clever
What did you do outside school?
I didn‘t really have a hobby
as such. We didn‘t dance. I was a member of the Brownies, then went up to
the Girl Guides, but most of the time we spent as a family. Oh, and me Dad...
we had a
piano, and me dad used to play the piano and we used to sing, ‘cause we was
in the - me and my sister were in the choir at the church. And we used to
sit and darn socks and play games - Hangman and Monopoly was a favourite amongst
Did you have a television?
No, we didn‘t have a television,
we had a wireless that we used to listen to.
What did you do when you left
I went to work with my dad at
the Maidstone & District Bus Company. I worked in the offices - took
the wages in.
Do you think you had to apply
for that job or did he fix it up for you?
Part and part. He said there
was a job going in the offices, so I went down and had an interview. And
we were given a big book, and it had got all the amounts that the conductors
brought in and you had to add it up. But again, I didn‘t mind. I loved maths
and things like that, so I got it right and I was just taken on. So, I worked
there until I got married.
How did you meet your husband?
At a dance. My sister and I
went to a dance, and he was there, so it all began then. He had a lovely
car, and we had a double wedding.
Well, she met her husband - not
at the dance; apparently he used to follow her to work on his motorbike.
She used to ride a bike to and fro school and her work - hairdressers, and
he used to follow her on his motorbike, and then he asked her out, so that
was that. And then we both got asked, you know, to get married, like, so
we decided on a double one.
How old were you both then?
I was nineteen, my sister was
twenty, and it was lovely. A big white wedding, we had. Eight bridesmaids,
and we made all their dresses.
And did many people come?
Yeah, we had a lot of… but I
can‘t remember how many now. But yes, there was, because obviously there
was both bridegrooms and our family, which is a big family when we all get
Well, it was the sixties by then,
so did you have much of a kind of sixties social life or not?
No, not really. I can‘t really
remember what we did do; it wasn‘t a lot. We used to go down on the beach,
‘cause we lived right on the sea, by the seaside, and that basically was it.
We had a youth club and… But no, I can‘t really say there was a lot of interest
He worked for Matteson’s meat
company, salesman, and then we came up here together, but then, unfortunately,
that was when we split up and I met my next husband.
Was that what split up the marriage?
No, it just went boring, and
we just sort of fell out of love, and it just didn‘t work any more.
Had you got any children by the
time you split up?
Tell me about the next stage
in your life, then, and how old you were.
Twenty one, and I met Michael.
He was a chef, because I worked in a handicapped home and he was the chef
there, and we got together. And that was when I had two children: Lee, who‘s
now thirty three, and Natalie, who‘s now twenty eight.
You hadn‘t got diabetes when
you were pregnant?
No, although I was told I had
a diabetic baby, because she was nine pound; she was rather big. But at that
time, no, I didn‘t have diabetes.
Was there any diabetes in your
Yeah, my brother‘s got diabetes.
He had it at the age of seventeen. He was in the army, so unfortunately he
was kicked out. And my cousin is also a diabetic, but he wasn‘t diagnosed
till quite a lot later; a few years.
How did your own diagnosis come
I felt dreadfully ill and I was
thirsty and I lost weight, but being as my brother was already a diabetic,
you know, we sort of gathered what was wrong. And I went to the doctors,
and yeah, it was. But I didn‘t go on tablets or anything; I went straight
How old were you?
I was thirty two, which is quite
Were you admitted to hospital?
No. I just went along to the
hospital, and they showed me how to do injections, with an orange and a needle,
and I had to go home and practice. And then it was time to do it on me, which
was quite nervous-racking really, but it was only once a day then, ‘cause
now I‘m on it four times a day, ‘cause I use a penfill.
The General, which is now the
And you were just admitted for
one day - that‘s all the training you got?
That‘s all the training I got,
What did they tell you about
monitoring your blood sugars?
To do it every now and again,
but we didn‘t have the monitors like we‘ve got now. We had, like, sticks,
and you had to prick your finger with this stick, which was quite sore and
really painful, and do it on a card - you had to measure. And if it was yellow
or blue or green would tell you how high or how low it was. And we had to
do that every couple of days, and just adjust your insulin by doing that.
Oh, so you did take more or less
insulin according to the blood sugars, did you, in tho…?
Oh yeah, yeah.
Would any other factors have
affected the amount of insulin you took, like exercise or diet?
Yeah, it always does and still
does. If I do any decorating, you can guarantee I‘ll get a hypo. If you
do a lot of dancing - I mean, in my later time, once the kids had grown up,
I used to go out quite a bit with a friend. And I had to carry sugar and
that all with me all the time, because any exertion, over time… I mean, people
say to you "oh, if you‘re a diabetic it doesn‘t make any difference to
your life", you know "if you control it, that‘s it", but that‘s
not true; it really isn‘t true. I mean, you‘ve got to watch all the time,
and no matter what you do - you over exert, and you‘re down. If you‘ve got
your children… I mean, I fainted, one day, with my young children, and it
was as well that I‘d said to them "look", you know, "if mummy
falls down or something" - neither of them were old enough to use the
phone - "give mummy sugar". And my daughter was only six and she
did. But it‘s really worrying, you know, and it‘s something that you can‘t
stop, but it‘s there in your mind. All the time, you‘ve got to think about
it. You know, if you‘re going out, you‘ve got to think "have I got everything?
What happens if I...", you know. And it‘s quite embarrassing as well,
because you go into the shopping centres, even now, and you start feeling
really weird, and you‘ve got to dive for a chair or a bench and get your coke
out and your sugar out, and you sit there spooning the sugar in. And people
stop and look at you, you know. And, in actual fact, only a couple of weeks
ago, I did it in Merry Hill.
this woman came over, and she went "you‘re a diabetic, love, aren‘t you?",
and I said "yes", and she said "are you all right?", and
I said "yes, thank you", and off she went. But, I found it quite...
it was nice, but it was really embarrassing.
When you were diagnosed back
in 1980, and if that had happened in a supermarket, would anyone have known
what was wrong?
I don‘t think so, because people,
then… it was unheard of. People didn‘t know much about it, really, did they?
But now, I mean, as I say, that woman, she knew, and probably a lot of other
Can you remember how people reacted
when you told them you were diabetic?
Very sorry - "oh dear, you
haven‘t". Because that was one thing, then, I think: they made more
of it as serious than they do now. It was something like "oh, you‘re
gonna die", you know. "You‘ve got diabetes - oh my god, how awful,
you‘re gonna die". Whereas now, you‘d say "oh I‘m a diabetic",
it‘s just shrugged off, and "oh, right"… nothing.
Can you just make clear to me?
Right from the start, did you actually change the amount of insulin you took
according to how much exercise you were going to have or what you were going
Yes, we were told how much to
have, but then if you‘re doing exercises or you know you‘re going out or you‘re
gonna have a meal a bit later than normal, I always used to do a blood sugar
and then take the insulin up or down or leave it as it is, all depending on
what… how… what it was.
And do you think you were instructed
to do that in that first day in the hospital?
No, you weren‘t. Then, it was
sort of "you do this and stay", but it didn‘t work for me. It just
wasn‘t right for me, and it still isn‘t - I still do it. Basically you‘ve
got a “line” that says "right, you take ten, ten, ten", but if you
know you‘re gonna do something or you‘re gonna have a meal a bit later, then
it‘s always best to do a blood sugar and do it accordingly.
And you worked this out for yourself,
right from the beginning?
Yeah, because of my brother -
because we‘d always got my brother around. Now, when my brother was diagnosed
as a diabetic, they had scales, and you used to have to weigh everything.
And my poor mum, she used to do all the meals, and she used to get this pair
of scales out and put potatoes on there and weigh them, because you had a
booklet, and on it was how much he had to have. I mean, they don‘t do that
now, but, I mean, it really was tedious for her, because every single thing
she put on these scales. And I remember her one day making a cup of tea,
and she‘d put the sugar in one of the cups and then gone to put it in David‘s,
and she absolutely went in a panic. "Oh my god, I‘ve got sugar in this,
I‘ve got sugar in this", and she just threw the lot down the sink and
started all over again! But, you know, that‘s something else you don‘t do
But, did he learn to adjust his
insulin, then, even before you‘d got diabetes?
No, he never did; he never adjusted
his insulin. He was always, and he still is, he has the same amount all the
time. But this penfill is a lot better, anyway, than what it was before,
just with the one injection.
So, I‘m still trying to work
out, then, how did you get the confidence to start altering your insulin amount?
I don‘t know. It just seemed
common sense, because, you know, I knew, because I used to do a lot - I was
on my own with two very young children - and because I used to do all my own
decorating and, well, everything. I was very, very lively person. And I
used to do it, and after a while, when you‘ve done it two or three times and
the same thing is happening, it stands to reason that something’s wrong, so
you‘ve got to do something about it. So, the next time, then, when I did
decorating, I‘d get my blood sugar, test it, and think "right, we‘re
gonna put this up a bit today", or "we‘re gonna take it down a bit
Did you tell the medical staff?
No. It was only... I don‘t know
why, because now, the first thing they say to you is "do a blood sugar
and put your injection accordingly". Now, they actually tell you that
now in hospitals, as well as, you know, if you go to the doctor’s, so I was
only doing, really, what they‘re telling you to do now, all these years later.
Why wouldn‘t you have told the
medical staff that you were doing it?
Because they’d say "oh my
god, you shouldn‘t be doing that. You‘re supposed to be on ten, ten, ten".
But they don‘t realise what sort of a life you lead. They don‘t know what
you‘re doing at home - only you know that, don‘t you?
Then tell me what advice you
were given about diet when you were first diagnosed.
No sugar. Potatoes - cut down,
have, like, three eggs - the size of eggs; I can always remember her saying
that. And not too much red meat; white fish is good for you; fruit - three
pieces of fruit a day. But above all, just cut your sugar right
No! Not to start with - it was
so hard. I just couldn‘t accept that I was a diabetic, if you like. Or,
you think "one sweet, one chocolate, one cake, one biscuit is not going
to make any difference", but I‘m afraid I‘ve learnt the hard way, because
it does make a difference. My brother was what you’d call a good diabetic.
He never ate sweets, he never had biscuits. If you asked him, you know, you‘d
be sitting there gobbling away at sweets and things, and you‘d say to him
"go on, have one", "no, no" he‘d say. That‘s the difference
between us two.
When you say "what you‘d
call a good diabetic", do you mean that the medical staff would talk
about a good diabetic and a bad diabetic?
Yeah. He was a good diabetic
and I was a bad one, to start with. I do admit it. But, as I say, I‘m really
sorry now, because I‘m paying for it, and that was what I was told. You know,
"look after yourself when you‘ve first got it, because later in life
it‘ll start telling on you". My brother is great now. He‘s got a little
bit of a problem with an eye, he‘s got a little bit of a problem with a toe,
but that‘s all, whereas me, I‘ve just about, you know, got everything going.
But really, if I‘m honest, it‘s probably my fault.
Did doctors and nurses make you
No, not at all. I just... years
ago, I didn‘t worry about what anybody said, really. That was the type of
person I was - I just got on with life and got on with what I wanted to do.
And if I wanted to go out and have six pints on a night, I‘d go out and have
six pints on a night, and then I‘d come back and adjust me insulin, which,
at the time, I thought was "oh well, you know, as long as it‘s coming
down again - the blood sugar - what have I got to worry about?". But
now I can see that it was the wrong idea.
You mentioned that you were on
your own with young children. How did that come about?
Well, my first husband left me,
and then I met my second husband. Then he left me for somebody else when
my daughter was three months old and my son was four.
So, that must have been really
hard being a diabetic as a single parent.
Yeah, it was. It was quite frightening,
really, because it was already frightening that I had got diabetes, and
I had this thing in my head all the time that you can fall down and collapse
at any time - that‘s how silly you think at the time - so I was worried about
the children. I was worried about having a hypo when the children were around,
especially as a young baby, Natalie was. So, it was, as I said before, it‘s
in your mind all the time. It‘s at the back of your mind all the time. And
if you were wheeling them to school, even coming up the hill, you know, was
a bit of an exertion, and if you were low already, then that would just about
finish it, you know. And I always remember having a hypo outside a shop,
and I‘d got Natalie in the pushchair, and, as I say, it‘s frightening, because
you don‘t know what‘s going to happen. You have all these silly fears that
you‘re going to let the pushchair go and it‘s gonna run down the hill, and,
oh, lots of silly things like that to happen.
What did you do on that occasion?
I went in the shop and asked
if I could just sit down. I told them I was a diabetic, and they just looked
at me very, very strangely, and I just sat down. I mean, nobody asked me
how I was or if I was all right, or anything like that. It was just, I sat
there, took my sugar out, and that was it really.
What did you tell your children
to do as they got old enough to understand?
To check that I was asleep, I
used to say to them, because they were so young. If I was, I said "get
the sugar", I said, "and put some in my mouth. Then if I don‘t
come round, if I don‘t wake up - count to twenty - and if I don‘t wake up,
then ring 999". Because it‘s no good giving them, as I thought, a phone
number to remember, because they were too little, so I just used to say to
them "ring 999".
Did that ever happen?
No. I did go down once with
Natalie, but she had the sense to give me some sugar, and I didn‘t actually
pass right out - it was just a case of flopping to the floor.
Did you do any paid work while
the children were growing up?
When they were young, I did cleaning,
‘cause that‘s the only job, really, that was about, where you get paid in
the hand and you can take your children, because they were really, really
good. I used to just sit them, take their crayoning books, and they used
to sit and do drawing. I only did a couple of hours every morning, but it
was seven mornings a week. But we used to have to come out and go across
a field, which used to take us about half an hour walk every single morning.
I mean, that was seven mornings, which got a bit tedious, especially in the
What kind of place were you cleaning?
Pub. My next door but one neighbour,
he used to be a steward of a club, and he said to me one day, would I like
to take a job because his cleaner had left. So, as I say, being as I could
take the children - if it hadn‘t have been John, like, I probably couldn‘t
have taken them - but it was fortunate, so. And my son, then, used to bottle-up.
He was old enough - he was about eight, nine - and while I was cleaning, he
used to bottle-up for John, which he enjoyed; he really did. And Natalie
just used to run around, and she‘d get a cloth sometimes and give me a hand
to clean the tables; make more mess than, you know, cleaning.
And how did that work with your
diabetes - doing a cleaning job?
Again, the exertion - some days
I was great, never used to bother me, and then another time, after I‘d walked
across the field, I used to just have to sit down. But John understood that,
and he used to make me a cup of tea and I‘d come round, and then I‘d be off
and start cleaning, and I was fine, not a problem then.
What did you do as your children
Bar work. As soon as Lee was
fourteen, he stopped and looked after Natalie. But I also had John‘s wife
next door but one watching them and looking after them, and they knew that
they could go there if there was any problems. And I started working for
John behind the bar, which I enjoyed tremendously; I really did like that.
And I started off with a couple of nights a week, and then three nights, and
then four nights. I used to work Christmas days, because the children went
to their Dad‘s; Mick always had them over the Christmas.
What did you like about it?
The people. Life used to be
quite boring at home. I know that sounds silly because the two children,
but you get fed up talking to young children - you need adults to talk to
sometimes. And the children used to go to bed at six,
So, that‘s why I liked it, because it give you chance to get out and talk
to people and just generally have a laugh, really.
When did you begin to develop
complications with your diabetes?
About eleven years ago. I had
a fortieth birthday party and I was fine then, and then it was downhill all
the way. I was diagnosed as having neuropathy, because I‘d noticed my legs
were going numb and my feet were going numb, and I‘ve no feeling in my feet
at all now. Then, a little bit later, I started getting very bad foot ulcers.
I had a hole in my foot that used to have to be padded and dressed three times
a week, so I was travelling to and fro the hospital. Then I had an ulcer
on my toe, my little toe, and it went that bad that they had to amputate it.
And then, it was just one foot ulcer after another. And I haven‘t worn a
decent pair of shoes in about eleven years, because I‘m not allowed to. They
started making my shoes, but they were absolutely hideous, so I bought a pair
of trainers - wide ones, extra wide - and took them along to see if I could
have permission to wear them, and from then on, that is what I do. I don‘t
wear dresses anymore, ‘cause I can‘t, because it looks silly - a nice party
dress, and look down and you‘ve got a pair of trainers on! Then I went into
hospital, and I had three months in hospital, because I had a mysterious sickness.
But in the end, they put it down to this neuropathy.
Can you remember when that was
That was six years ago. But
before that, I had cataracts removed. I didn‘t know, at the time, what it
was. I just started going very blurry in one eye, and then, when I looked
in the mirror, I looked like an alien, because I‘d got this white cover over
the eye which had come down, and that frightened me. And, of course, when
I went to the doctors, he said "oh, it‘s cataracts", but I was one
of the youngest people ever, apparently, to have cataracts removed.
How old were you?
I was in my forties. So, I went
into hospital, had the cataract removed, and then a year later
the other one came up, so I had to go back in again - only overnight - to
have that one removed.
And then, you say, about six
years ago you were in hospital for three months. Did it take them a very
long time to diagnose what was wrong?
Yeah, it did, because it was
the sickness, more than anything, that they couldn‘t find what was wrong.
They said it was the antibiotics they were giving me, and then they changed
the antibiotics. They just hadn‘t any idea whatsoever, so I stayed in for
three months, but I was really, really poorly.
What were hospitals like six
Six years ago – okay, but not
like today, or not like time now. Now, it‘s all cleaning, cleaning, cleaning,
whereas you never saw much of it then, you know, it was just… But I think
the staff was better - the nursing was better six years ago than it is now.
Nurses helped you: they came and tried to talk to you, find out if anything
was wrong; they took time. I mean, I had a lovely doctor, and she really
was good. But nowadays, it‘s all - you‘ve got to do it for yourself; that‘s
the difference. Six years ago, you never saw a cleaner. They did it, because,
I mean, the place wasn‘t dirty, but not like now. I mean, every time you
look up now, there‘s a cleaner under the beds, there‘s a cleaner pulling beds
out and doing all underneath, cupboards, the rails on the curtains.
That must be because of the MRSA
I would say so, and I did get
MRSA while I was in there.
That‘s in your most recent stay
in hospital, so we‘ll come to that in a minute. What happened after you came
out of that three month spell in hospital six years ago?
It took me a long time to get
better. I was very weak, my diabetes was out of control, so that had to be
controlled again. It was just generally a very slow healing.
By that time, six years ago,
were you telling the doctors and nurses that you were adjusting your insulin?
Oh yeah, by then - yeah, because
they were doing it
as well. That‘s when they started really saying "well look, you know,
we‘ll have to adjust your insulin, we‘ll have to do this, we‘ll have to do
that". I mean, I used to go and see Dr Wright at that time, and he was…
he asked you questions like “what’re you doing?”, “what‘re you not doing?”,
and he‘d say, then, "well, adjust your insulin, take it down two or up
it two", but I was already doing it anyway.
Which hospital did you see Dr
The General Hospital in Birmingham city. And I first met him because he asked me if I‘d go
on an Oxford study, which I agreed
to, which I was on for, well, most of the time that I‘m a diabetic. I used
to go and see him every week, and he used to ask me questions - how was I
getting on, which, at that time, my diabetes wasn‘t really that good; not
really because of my fault, at that time, because I‘d learnt to not eat sweets
and biscuits and things like that by then. I was just one of these patients
that didn‘t have good control over diabetes.
I think that was the UK Prospective
trial. Can you remember when you went on it?
As far back as I can remember
being a diabetic. I used to go to the General every week for a check-up to
start with, and then it was every three months, and then gradually, as it
got more stable, it used to be a longer time. But you used to have to travel
down, to and fro. And at that time - transport - I‘d never heard of, you
know, to get an ambulance to take you there and take you back, because at
the time, as well, I was suffering with bad feet ulcers. But now, if I‘d
got an ulcer now, you can get transport to and fro.
So, that was a big commitment
for you - travelling from the Black Country to Birmingham,
weekly to begin with.
Well, I lived in Quinton then
- I didn‘t live in the Black Country then, which actually
isn‘t so far, and it‘s only two buses. But it was a jaunt, especially if
the children were off… you know, off school, or, as it was, the children were
young then anyway, so you used to have to drag them two along as well.
How did they find that?
As all young children do - bored.
Did you manage to continue with
bar work with these ulcers on your foot?
I did for a while, until I had a really bad one, and then I had to give it
up. But once it had healed up, I went into hairdressing and - only washing
hairs and neutralising perms - where I met a lady who had a pub in Old Hill.
So she asked me - we were talking one day - and she asked me if I‘d like to
go and work for her, which was quite a trip, really, from Quinton down to
Old Hill, but when money‘s short, you do do it. So, I started working for
her and her husband George. And that‘s where I met Tony, who is my partner
now, and I‘ve been with him for nearly ten years. He‘s got two young children
- or he did have two young children; they was only six and ten when I met
him. I met him there, and then I moved in with him, and my daughter took
over the house I had in Quinton. It was a council house, but she put her
name down and we did - we said we were gonna do a swap. So, she moved in
there, and she‘s still there now.
And where did you move to?
I moved in with Tony in Sherbourne
Road in Cradley. I still worked for George behind the bar, and then, three
years later, George was going to retire, through a bit of bad health, so he
asked me if I‘d like to take the pub on. And that‘s how me and Tony became
tenants of the Riddins Tavern. We did that for three years, which was good,
but then we came up against a few money problems, and the pub wasn‘t doing
too well. And then we were offered this pub that we‘re in now, The Yew Tree,
which was eighteen months ago.
And how did Tony react to you
Very well. He was, when he first...
‘cause at first, I mean, I didn‘t tell anybody. I never used to go around
saying "oh, I‘m a diabetic, I‘m a diabetic". I try not to tell
people, so he didn‘t know for a little while anyway. And then I told him
and, you know, through sort of going into hypos and things like that. And
he was very good. And I always remember, I had a really, really bad hypo
one night, and I couldn‘t get out of bed, and I was shaking
and I was sweating. And he had to get my sugar and put it into me, and do
a blood sugar on me to see what it was, and it was down to about one point
nine. And he panicked, and somewhere, in the back of my head, I knew he was
panicking, even though I wasn‘t really with it - I know that sounds silly.
But it was eerie, because it was a long, long way away, and his voice was
a long way away, but I knew he was panicking, and... But he did it, and afterwards,
when I came round, we had to change all the bed because it was wet through,
and he said "god", he said "you did frighten me". And
I really did; I really upset him. But that‘s only happened once since, that
bad, but he‘s really, really good; very good.
Does he know anybody else who‘s
living with somebody with diabetes?
No, none at all - didn‘t know
anything about diabetes at all before he met me. Now he knows it all, I think!
Tell me how things have gone
From Tony‘s point of view? He
gets upset. He feels guilty, he says, sometimes, because he can‘t do anything
for me. If I shout for him, you know, in the night, he says "oh god,
I wish it wasn‘t me" - like him, but obviously it can‘t be. And he says
I make him feel guilty. I don‘t know why, ‘cause I don‘t mean to. If we
have a row, sometimes, you know, he can be very unkind, you know, ‘cause he‘ll
say - ‘cause if we have too much of a row I can go in a hypo - so sometimes,
if he‘s really nasty, he‘ll turn round and say "now, go in the other
room and have a hypo or whatever it is you do". But then he‘ll come
back and he‘ll say "I can‘t help it", he says "you make me
feel guilty because", he said, "you‘ve got it all, like, you know".
But he‘s very caring. He looks out for me, more so now than ever - this last
Tell me, then, what‘s happened
to you recently.
Because in March we had a holiday.
It‘s our first holiday we‘ve ever had together, ‘cause we‘ve always taken
his Mum or his children, and
we went to Tenerife. But before we went to Tenerife, I fell
over in Merry Hill, and at the time my foot swelled up. So, I went to - on
the Saturday - I went to the General… no, I went to Selly Oak, to the accident
and emergency, and they said that I had sprained my ankle. So, I said "well,
it‘s rather swollen. I‘m a diabetic - are you sure?", so she said "yes,
it‘s a sprain". I said "well, would you mind if I ask for an x-ray?".
So, I had an x-ray, and she looked at it, and she said "oh no, it‘s still
a sprain", so I said "okay, ‘cause" I said "I‘m going
on holiday on Tuesday to Tenerife". So, off I went, and I don‘t know how, but fortunately
we spent most of the time around the pool, we didn‘t do a lot of walking.
And then, on the last day, we were packing, and I sat on the bed, and when
I got up I couldn‘t stand on the foot. It had completely broken, and it was
actually - it was really, really frightening - because it had actually lopsided
and gone over on the side, and I couldn‘t straighten it to put my sole on
the floor. Well, fortunately, there was a doctor in the hotel, so he came
in, and he said "well, you‘ve broken it", so, he said "take
you to the hospital", so they sent for an ambulance. I went into hospital
in Tenerife, and it was horrendous, absolutely horrendous. They had people
there that spoke English, but it wasn‘t very good English. And they finally
operated, and I‘d broken it twice, in two places, so they put a plate in it.
But I was in there for ten days and I couldn‘t get them to understand diabetes.
I was on a level of twenty most of the time, and I was supposed to be on five
to six, you know, quite low. And I couldn‘t get them to understand that I
needed to be lower, because being on twenty was making me really, really sick,
and it was making me bad. And Tony came every day - looked after me. I mean,
I was that ill, at one stage he was emptying my bedpans for me, washing me,
taking me to the loo when I started to feel a bit better. He really was tremendous.
And then they gave me permission to fly home, ‘cause
you have to have a signature from the doctor to fly home. And I flew home,
and the following day I went straight down to emergency again, and it was
infected. They said that I‘d got to go into hospital for a few days, so I
went into hospital, and went on an intravenous drip. And finally, the infection
wouldn‘t clear up after three months in hospital, so they took the plates
out and re-operated. And in all, I had an operation twice, and then I went
back down again to have an operation to clean it all out, but it still stayed
infected. And then, while I was there, I had a sickness bout, the same as
I had before, which was due to the neuropathy. And they also found a little
ulcer, which was giving me a great deal of pain and indigestion. So, they
gave me some tablets, which made me sick, so we swapped them. And this went
on for another three weeks, until it finally disappeared as quick as it came,
and then I was able to get off and start walking and feeling quite a bit better.
But, in all, I spent six months, almost to the day, in hospital - in Selly
Oak and the QE.
But, before we talk about those
six months. I remember I spoke to you on the ‘phone before you went on holiday
to Tenerife, and you were already worried about your
Yeah, because I was deteriorating.
I knew it; I could feel it. I wasn‘t as lively as I used to be. I wasn‘t...
there was hardly a day went by when I didn‘t feel ill - I was either feeling
sick or I got tremendous headaches or I just couldn‘t walk, ‘cause my legs
gave way. They were very, very weak, and for no particular reason, other
than, obviously, perhaps the neuropathy.
And what were the doctors and
nurses saying at that stage, before you went to Tenerife?
Well, I‘d already been told by
Dr Dunn, which was my consultant at the time, that with this neuropathy, it
would deteriorate, and in the years, it would - that she didn‘t know whether
it would be in three years time, five years time, ten years time - I
would end up in a wheelchair and on dialysis. And as I got deteriorating,
I felt that probably this was about the time when everything was gonna happen.
How did you feel about that?
Scared. I didn’t know anything
about dialysis, and I had this peculiar thing in my head that if you had dialysis,
you were going to die: it was just an end treatment for diabetics.
So, now let‘s move forward, then,
to the time when you were in hospital and you begun to feel better during
the six months. What happened then?
I felt a lot better by about
four months after I‘d been in, because I had been really, really sick, really
poorly. I thought I was going to die, without being too dramatic, but so
did Tony. Tony told me afterwards, because he was traipsing to and fro the
hospital. It was costing us ninety pound a week just for Tony to come and
visit, because it was fifteen pound each way in a taxi, and it was no good
him catching the bus because it was three buses, and he‘d got the pub to look
after as well. So, he was traipsing to and fro, and at one stage the doctors
phoned him and asked him to come in because I was so poorly. And he said
afterwards "god", he said, "I thought you were going to die",
he said, "I thought you‘d given up". He said "when I came
in one of the days", he said, "you were really, really awful",
but I can‘t remember him coming in that day. And then, when I started getting
feeling better, I was walking to and fro the loo, but even now, my legs just
haven‘t gone back to normal. I have a very, very bad job of getting upstairs.
In actual fact, in the few weeks that I‘ve been out of hospital, I‘ve had
to shout for help, ‘cause I‘ve got half way up and I can‘t get any further.
What was the hospital like during
those six months, compared with your spell - the three months you spent -
six years before?
Very different, ‘cause I found
before, when I was in hospital, the nurses helped you a lot. They were concerned
for you, they used to come and ask if you was all right, and they‘d sit with
you. And I know not everybody would want that, but it was... when you‘re
lying very, very ill, everything is a long, long way away; nothing
seems real. And if you‘ve got somebody that‘s just there beside you, it does
make an awful lot of difference. And although Tony was there a lot of the
time in this time, I wanted him there all the time; I just wanted him to be
there. I didn‘t want him to say anything; I didn‘t want him to... I mean,
he used to bring his newspaper, and while I was lying there half asleep, he‘d
be reading his newspaper, but the fact that he was just there meant so much
to me; it really did.
And the nurses weren‘t there?
No, they were... don‘t get me
wrong, they were... they did their job, and some of them were really, really
nice, and, you know, they‘d chat "oh, hello Shirley", you know,
and "are you feeling all right?" and all this, but you had to do
everything for yourself. I don‘t mind that. I mean, don‘t get me wrong,
I didn‘t want to be waited on, because I‘m very independent - I‘ll get up
and do what I‘ve got to do. But it‘s all, nowadays… I mean, even the old
ladies of eighty and ninety, you know, "come on, up you get", "get
on the chair", "don‘t do this", "don‘t do that",
and to me it sounds very cold. But when I mentioned it to one of the nurses,
‘cause I thought she was a bit off to one of the old ladies, she said "nowadays,
it‘s better to get people up, walking, working, so that they get better quicker".
But I don‘t know if I agree with that. I don‘t know. When you‘re sitting
watching it, and these poor old ladies - all they want to do is to be left
on their own and just left to sleep or whatever, and they‘re being pushed
about, and it just didn‘t seem right to me. And I saw an awful lot of things
like that while I was in there for six months.
And what about your own treatment?
My own treatment. I wish doctors
would get together, because one minute I was told one thing by one doctor,
and then along would come another doctor and tell me something different.
And when you‘ve been in hospital six months, towards the end of that six months
you‘re getting very, very desperate to come out. And you‘ll get a doctor
come along and say "oh, I think if you‘re all right tomorrow, we‘ll send
you home the day after", and then you‘d come along, and another doctor
would come along and say "your potassium‘s a bit too high, so give it
till the weekend", and that was another two days after that. And, as
I say, you know, considering I was supposed to have only gone in for a couple
of weeks, and I ended up
in six months - not their fault. I mean, it‘s not their fault that I got
a bad infection, but they should get together and not keep telling you different
stories, because it gets your hopes up. And when you get your hopes up in
a hospital after six months, you get very, very depressed. And I did get
depressed at one stage, and that was when Tony went through hell, because,
I mean, I was ringing him at
Were the doctors and nurses good
at explaining to you what was happening to your body?
Certain ones. Some used to come
along and... but, you see, I used to ask questions. No matter what they did,
I asked why they were doing it and what they were doing, and sometimes I‘d
even tell ‘em that they were wrong and I knew better. I didn‘t, probably,
but that‘s how I felt.
What sort of thing did you know
My diabetes for a start - how
it affects me, because the doctors class, or seem to class you all the same,
and we‘re not the same. Nobody - I‘m going back, really, from me and my brother
again. My brother doesn‘t react to the diabetes like I react; he doesn‘t
eat like I eat; he doesn‘t feel like I do; he hasn‘t got to cope with the
neuropathy like I do. I find it very awkward to walk. I walk, I know, flat
footed because I can‘t feel my feet on the floor, and all you can feel is
like a vibration - that‘s the only way I can explain it - at the top of your
legs that you‘re walking and you‘re on something, and it really is weird.
And I‘ve got very bad eyesight, so I can‘t always see. And I can‘t see water
on sides - because it‘s so clear, I don‘t see it at all. I mean, I‘ve had
water pouring over the sink, because I don‘t know it‘s going, like, you know.
I can‘t see black on black. We‘ve got a black Labrador,
and I keep falling over him because I can‘t see him. A lot of things like
that. And in hospital, you know, you reach out for something on these little
tables, and I was knocking glasses of water - not glasses, but their tubs
of water over and things like this. And it‘s
embarrassing, because I can‘t see properly; it‘s very, very blurry.
What explanations did doctors
give you for what was happening to you?
They didn‘t really. It was just,
from them, it was just the next step to your diabetes and your neuropathy;
that it was all acting together. And then, it wasn‘t until I came out of
hospital and I went to my sister’s, and I had been feeling really poorly again,
because it was up and down, up and down. One day I‘d feel good, the next
day I‘d feel bad. And I went to convalesce, if you like. My sister said
"come on down", so I went down for a week, and she was marvellous.
She ran around after me, waiting on me, but I was just feeling worse and worse.
I was getting very breathless, very ill feeling, I wasn‘t walking properly.
And in the end I went to see her GP, ‘cause she‘s a doctor’s nurse, and she
made me an appointment. And it was her, actually, that told me that I need
dialysis, and yet I‘d been in hospital all those months and nobody had mentioned
dialysis at all. And apparently I‘d got fluid on my lungs, so she said "go
straight back home, go to the hospital, and tell ‘em", like, you know.
So that‘s how, actually, I had to go on dialysis, not...
When did you go on dialysis?
A few weeks ago in October.
I was asked by the doctors if I wanted to go on CAPD or - I don‘t know what
they call it - on the machines actually in the hospital, which I‘d already
had three goes of - four hourly treatments. So, they came along, explained
all the CAPD to me, which, at first, I was really very nervous about, because
you have to have a tube put into your stomach, which you carry around all
the time - you have it taped to your body. And then you have two bags: one
which is an outlet, and one which you have to hang up and then drain all that
into your stomach, and it‘s two litre bags. And what I didn‘t know, to start
with, was - I thought it was going to be so easy - "right, we‘ll just
have a bag up, and a bag on the floor, and take it through, and that‘ll be
it". But, as it turned out to be, it‘s four times a day. Every single
day you have to do this, which
puts you in, you know - I‘ve got to be there at a certain time; I‘ve got to
be there all the time; I‘m not going to have time to go out; I‘m not going
to have time to do anything. But it hasn‘t proved quite that bad. I wasn‘t...
didn‘t know what to expect at the time.
Tell me what‘s involved exactly.
Talk me through a day.
I get up of a morning and - oh,
the night before, I always put a bag on the radiator, because you have to
warm it - and so I get up of a morning and have my breakfast. And then I
get the bag, wash my hands - it‘s all washing hands, and using this Hydrex
stuff to… like antiseptic - and there‘s an awful lot of that involved. And
it‘s a matter of wiping the table down, getting your stuff ready, getting
your bag ready, undoing it, putting it on a machine, because I‘ve got a UVF
machine, because I can‘t see to connect the two tubes together, so I have
to use this machine to do that. And then you hang one up - one of the bags,
which I‘ve put a hook - because I‘ve got a four poster bed, I‘ve put a hook
into the wood on the four poster bed - so you hang one up and you put one
on the floor. And then you open your valve from your stomach, and it goes
into the bag that‘s on the floor. When you‘ve drained everything out, you
turn your valve off, open another valve, which lets all the liquid from the
one that‘s hanging up back into you. So, you‘ve then got two litres of fluid
in you, which I was told you wouldn‘t notice, because it just disperses inside
of you and goes all round your body, but that‘s not true either. It‘s very,
very heavy, it‘s very, very uncomfortable, and it‘s painful; that‘s what I
find. The one in the morning isn‘t so bad, but by the time you get the one
in at night, even though it‘s still the same amount, for some reason, whether
it‘s because you‘re full up with three mills, it really is uncomfortable and
it‘s quite painful.
And you lie down all the time
this is happening?
No, you sit on the end of the
bed over the table to do it. And then, of course, you have to empty it, which
you empty down the loo. And then you have yellow bags, clinical bags, which
you have to put out for people to come and actually collect. You don‘t put
anything in the dustbin.
When I first did it, it took
me hour and a half, so by the time I‘d finished one, it was nearly time to
start another one. But now it takes me about twenty five minutes, which is
very good, because I‘ve got that time in between. But you can‘t change a
bag less than two hours in between. And when you‘re on a full bag - ‘cause
you start with a quarter of a bag and work your way up after every three or
four days - but once you‘re on the full bag, you keep it in overnight; you
don‘t let it out. And all the time, now, you‘ve got that two litres inside
of you. You‘re never ever empty, because as fast as you empty it, you‘re
filling up, and then that‘s got to stay in with you for two hours - not less
than that, and no more than twelve hours. The one at night - if you do your
last one, say, at
And what‘s it like - the bags
that you have to throw away?
Plastic... no, they‘re like a
very, very heavy plastic - I‘ll show you one later - which are about twelve
inches by eight inches, and they‘re full of this liquid. And down… they‘ve
got two pipes, like tubes, coming down at the end, which you actually connect
to yourself. But it‘s not nice; I mean, I‘ll never wear a bikini again, I‘ll
never go topless when I go out. You can‘t have a bath - that‘s something
else; you have to have a shower. And all the things that you can‘t eat, I
find it very difficult, because the things that I can‘t eat for dialysis,
I‘m supposed to eat for the diabetes. You‘re not supposed to eat oranges,
and yet you‘re supposed to eat oranges for diabetes. I found it very difficult,
really, to adjust for a couple of weeks. I‘m getting there now, slowly.
How many weeks has it been?
Three. I actually had training
the first week, which I went, and every day I went to the hospital and did
it until I knew, you know, exactly what I was doing. I was a bit nervous
when I first did it on my own, when we came back, but now it‘s very good,
very quick, I don‘t mind.
And how‘s your partner finding
Well, he doesn‘t really know
much... It doesn‘t make any difference to him. It was the sight of me, really,
in all honesty, that was a bit weird, because when I came out, I was that
weak I couldn‘t do much myself. And I couldn‘t get in and out the shower,
so obviously I had to have help. And it was - although I‘d been with him
for ten years - it was embarrassing to stand there with these two tubes coming
out your body, and this tube dangling down your legs, like. But he doesn‘t...
he takes it all in his stride; it doesn‘t bother him at all. He never says
anything or never backs away, or... And he has to do my site, because where
the tubes come out, you have to change your dressing every day, and I can‘t
see it, so he has to do that for me, as well, every day. Take my blood pressure
- he does that every day. So, he just gets on with it. In actual fact, he
reminds me sometimes. He‘ll say "come on we‘ll do your site now",
so that‘s very good; it does help.
You said that when you were afraid
of having dialysis, you thought of that as kind of the last thing. How are
you feeling about it now?
Well, the reason I felt like
that was, when I went on the machine - I‘ve been on the machine four times
before I went on CAPD - and there was about twelve machines in this room.
And I was on one of them, and the other eleven were people, patients, that
were all in wheelchairs, and they were all very, very poorly. They really
did look awful. And I thought "I‘m the only one that‘s walking, the
only one that..." - well I wasn‘t walking, I was in a wheelchair because
of my broken foot, but, I mean, the healthy looking one, really. They was
all look so poorly, so ill, and I thought "they‘re all waiting to die",
you know, and that‘s what‘s gonna come to me. But since being on the CAPD,
now, when I go along to the hospital, they‘re all like me. They‘re all walking,
they‘re all cheerful, they‘re all... they have a joke and a laugh about it,
you know. I mean, there‘s still some pretty poorly people there, and there‘s
a lot of problems that go with CAPD, because you see them all coming in.
Infection is the worst thing. It‘s very, very easy to get an infection in
so that‘s why you have to be so careful. And there are - when I go in, every
time there‘s somebody in there, more than one has got an infection of some
sort, or something is wrong. But at least they‘re walking; they look healthy.
And how often have you had to
go to hospital in the last few weeks?
Two... well, when I did my training
it was every day for five days, and now it‘s once a week. I have to go and
have me bloods taken and get the potassium level, because it was pretty high
when I first came out: it was six-seven and sometimes higher. Now I‘ve got
it down to four-point-three, which they tell me is very good, so whatever
I‘m doing, I‘m doing right. But I think I had, as I say, a bit of a problem
with the diet, but I‘ve since got a book. And you have to mash your potatoes
and mash your veggies, fill ‘em up with… You do your potatoes and your veg,
you boil them, and then you have to throw the water away, and re-put water
in and boil ‘em up again, which you can imagine is pretty stewy, like; so
I don‘t eat vegetables much anymore! But I think I‘ve got it now. I think
I‘ve got to, you know... I must have done to get the potassium down a bit.
But I just go once a week now.
What keeps you going?
Tony, because he‘s very supportive.
Especially now, ‘cause life‘s very slow at the moment. I can‘t walk properly,
I don‘t climb stairs very well, I can‘t bend over because I need help, I still
can‘t get in and out the bath on my own. I‘m very, very weak, altogether
really, which is very frustrating, and sometimes I just burst into tears.
But I can‘t help it - I can‘t get out of it. And Tony‘s always there for
me. I mean, I‘ve been upstairs and knelt down and I can‘t get up, so I have
to bang the floor, and he runs up and he helps me up. He‘s always there before
me now. He does most of the cooking. I get very breathless, even to make
a bed, so that‘s very frustrating. But my grandchildren come and see me.
I‘ve got seven grandchildren, the youngest being
three months old, and the two eldest are both eight. I‘ve got three boys
and four girls. And they keep me going; keep me alive. But even them, they‘ll
come and they‘ll say "what can we do for you today, Nan?". They‘re tremendous; they really are lovely.
What can they do for you?
Well, one of the eldest who comes
- as I said, I see more of my daughter‘s children than I do of my son‘s unfortunately,
but that‘s the way it is - he‘s eight, and he‘ll come and make me a cup of
tea. And a lot of the time I go to bed early, and he‘ll just sit beside me,
or he‘ll bring a video down from home and he‘ll put the video on. And little
Ben - that‘s Dalton - and little Ben, he‘s only four, but he comes in and he says
"you‘re not going into hospital any more, are you, Nan?.
You‘re not going to hospital any more?". But all the time I was in hospital,
he came running in, and it was "are you coming home today?". And
the other children - I‘ve got Dylan, he‘s the eldest on my son‘s side, Danielle,
Olivia, Charlotte, and the youngest one‘s Katy. And they don‘t really know
so much about me as what the other two do, but they come in, and they‘ll say
"hello Nan", and go off and play with a few
toys that we‘ve got in the front room. But it‘s nice to see them grow up,
growing up, and all I hope is that they get older and I can see it. Because
that is one of my... it‘s funny, but you don‘t think about it until you get
into bed at night, and you get into bed at night and you start thinking about
things. And I just hope I‘m around when they‘re getting to their teenage,
you know, and see what they‘re like and the way they grow up. Because, you
think - things have gone so badly this year and I‘ve deteriorated so much
in the last year, it makes me wonder what next year‘s going to bring. And
I don‘t mean to be dramatic, but that‘s how it makes you feel.
How has Tony managed to run the
pub without you?
Extremely well. He‘s had extra
staff in, obviously, to count for the
time that I‘m not there. But again, he‘s the type of person that gets on
and does things - like he gets on and helps me, like he gets on and does things
for me without saying anything. He just gets on and does it. He enjoys the
life, he loves the drink, he loves being in the social circle, but it‘s hard
work. It‘s not just standing behind pulling a few pints. I mean, he‘s a
member of the darts team, so he goes to and fro. He does all the snacks and
the sausages and the chicken, and whatever else he finds, for their… after
the matches have finished. He‘s a member of the dominoes team, and he goes
with them. He does everything, really. He does all the cellar work, and
goes to the bank, and does the wholesalers. He‘s gone into a routine - he
knows what he‘s doing, but he enjoys it. He gets a bit depressed sometimes,
because there‘s not always enough money to go around, but even that he copes
How do you manage to pay for
all your visits to the hospital?
I go on transport now. Since
I found out I could, because I‘m not walking, I order transport. But even
that, I mean, has its problems. I mean, I can have a
How do you entertain yourself
while you‘re hanging around?
Down there at the hospital?
Just sitting around really. You get one or two doctors coming in and the
nurses coming in, and you just grin and bear it, really.
How do you think your life would
have been different if you hadn‘t had diabetes?
It would have been like, taking
a pub on,
joining Tony, being behind the bar, having a life together, because we haven‘t
got a life together at the moment, because I can‘t cope with the work downstairs,
and obviously Tony can‘t be in two places at once. So he‘s down there and
I‘m up here, so we haven‘t got a life together, really, at the moment. We
don‘t go out together - well, I never feel up to it of an evening, anyway.
I might go down there and sit on a Friday and a Saturday night, but there
again, Tony‘s the other side of the bar and I‘m this side, which makes me
very guilty. Because on a Friday and a Saturday we have entertainment, and
it‘s really, really so busy, you can‘t get another one in the bar, and I want
to get up and help. He‘s rushing around - even though he‘s got two other
staff on - he‘s rushing around, and I‘m sitting there doing nothing. And
I feel that guilty that I end up in tears and coming back upstairs, or I try
and help, and then that makes me ill and I feel worse than when I went down
there. But again, you know, he says I shouldn‘t feel guilty, I should just
relax, but it‘s very hard to do that.
But somehow you sound quite chirpy.
Your voice isn‘t depressed.
Oh no. You can‘t be. My time
for depression is when I‘m on my own at night time. I pretend a lot, because
I feel I have to, because sometimes, if I went around feeling, or acting the
way I feel sometimes, everybody would disown me; nobody would talk to me.
Tony would leave me - I‘m surprised he hasn‘t, really, but! So, you push
yourself forward. It‘s very hard to do sometimes, but then you get in your
bedroom at night, and plenty of nights - you see, Tony and I don‘t sleep together.
That‘s not being personal or anything like that, but he snores – badly, and
I need sleep, being selfish, so we don‘t sleep together. Plus the fact, since
we‘ve had the pubs, he doesn‘t come up till two and three o‘clock in the morning,
and my health doesn‘t stand that - every single morning being woken up at
that time in the morning, so that‘s the way we work it.
What message would you give,
from your experience of diabetes, for someone who was newly diagnosed?
Well, my son has just become, or diagnosed as a diabetic at the age of thirty
two; he‘s now thirty three - same age as I was. Stick to your diet. Stick
to what the doctors say. It‘s very easy to pick up a chocolate and a biscuit
or a cake and think it doesn‘t make any difference, when you‘re young. And
when you‘re young, you think at the age of fifty is a long way off; you haven‘t
really got to think about when you were fifty. But you do as a diabetic.
It creeps up on you very slowly. And if you go off your diet, if you go off
what you‘re told to do, you‘ll end up like me. Because even though I do things
all right now, and I have done for, oh god, a number of years now, over ten
years, I didn‘t to start with, and I think that was the time when it really