People with Diabetes
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Allan Jones
Person with diabetes
Born in Pontypridd in 1938.
Diagnosed Type 1 in Cardiff in 1945

Overview: Allan Jones` father was a miner with six children. They had little money but had to pay for insulin and equipment until the National Health Service was created in 1948. They couldn`t afford cotton wool and re-used needles until they were blunt. When Allan was 15 he got a job as a messenger on the railways but had to pass a medical before being promoted. He feared he would lose his job if his diabetes was discovered, so took with him a sample of his brother`s urine! He passed the medical and worked happily on the railways for 30 years.
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<A name='(1)'><b style='color: #000040; font-size: 18pt'>(1)</b></A> Tell me about your background

(1) Tell me about your background.

Well, as a child, I can remember my father was a miner.  We were six children, eventually - I was the second oldest.  Life was hard, because my father worked six, seven days a week.  My mother never worked, because the number of children she had.  And life, really - well, for everybody in the valleys then - was, you lived day to day.  You sort of didn‘t have the money to go out and just buy every day of the week.  You sort of dealt in the local shop and paid the bill the end of the week.  Until you paid that bill, you wouldn‘t get any more.  But we survived, you know.  I think if you were the oldest child, you would tend to be the one that had the most new clothes, because clothes would get handed down to each one of the younger ones.  They would pass it down and everybody wore them, you know, before they got thrown out.  But...

Did you have enough to eat?

Yes, I can‘t ever remember going hungry.  It was, perhaps, pretty basic food.  My mother would make a saucepan full of stew, and it would last a couple of days you know - warm it up.  But not the luxuries of today; very basic food.  Quite a lot of chips and potato, but I can‘t ever remember going hungry.  Just far more basic food than the variety we get today.

What would you have had for breakfast?

For breakfast, I can remember it was always toast or porridge.  That was basically the breakfast meal.

And then your midday meal?

Midday meal would be often chips - egg and chips.  You couldn‘t always get eggs - eggs were not plentiful - but probably bread and butter and chips was one of the main sources of dinnertime meal.

And then in the evening?

In the evening, my mother would… perhaps twice a week we‘d get a cooked dinner.  Not a great lot of meat - just buy enough meat to be able to make the gravy, you know.  I suppose my father had most of the meat, but…  And then we‘d have a stew a couple of times a week, or my mother would make a pie, but, in general, that sort of food.  But never ever went hungry, or, I mean, sometimes perhaps we‘d just have beans on toast, you know, or egg on toast; that type of thing.  But all very basic food, you know.

Can you explain why your father had most of the meat?

Well, I would think because he was working in the mine, and he was working very, very hard: he was on the coal face.  I suppose we needed to make sure he kept going, you know.  So, I didn‘t realise that at the time, but he wasn‘t a person that demanded it.  I think it‘s just the way my mother tried to sort of share things out.  But we didn‘t go without anything.  I mean, in those days, it would be making your own fun out playing, and so it didn‘t cost a lot.  You weren‘t sort of demanding money to go to the cinema or to the theatre or whatever, you know, it was just make up your own fun and games.

(2) So, how did you entertain yourself without theatre or cinema?

Well, there were quite a few children in the area that I lived, so one of the... I think the biggest things that used to occupy us - or most often - we used to get an old bat and a ball, we‘d use an ash bin for wickets, and for hours we‘d play cricket in the back lane, quite often, you know.  There wasn‘t a field around at the time.  You had to play in the back lane.  If we‘d played on the street, you‘d normally get the neighbours out - broken windows and all that sort of thing, but.  And then we used to quite often - living in a very mountainous area - we‘d go up the mountain, and we‘d make a tent out of some old coats and ferns.  And we‘d perhaps take a little - if the food was available - we‘d just take a couple of biscuits and a little bottle of squash or pop, and we‘d be gone for the day and we‘d spend all day gone.  And, of course, in those days, there wasn‘t the worry of children getting harmed, so your mother was never ever afraid to let you go for the day, which today - my daughter - I‘d never let her go, you know.  So, you could go for the day and not be missed - you know, mother wouldn‘t worry at all.  There‘s quite a nice park in Pontypridd - it‘s always been there.  Swimming pool - spent a lot of time in the swimming pool; spent all day down there, you know.  And then just hide and seek and just all the type of games, you know.

Can you tell me about your schooling, before you got diabetes?

Well, my schooling before diabetes - there‘s not much I can say, because I was probably in...  The school I started in was right behind where I lived - you can see the school from here.  I probably was only five... I probably didn‘t start school until I was five.  And then I can remember being in school.  I can remember having... we were put to bed for an hour in the afternoons to have a little sleep.  And I always thought "I‘m not very happy with this", because whenever I used to undress, I‘d think it was time for bed, and I tended to think "I‘m not going to go home from here, I‘ve been put to bed".  And I can remember crying quite a lot about that when it became bedtime.  But I had very, very short time in school before I didn‘t go to school, because of my illness.  But very, very few memories of that, because I was so young.

So, tell me about being diagnosed with diabetes.

Well, being diagnosed, I can remember - although it‘s a long time ago - I can remember clearly that I used to be very energetic.  I used to run, never walk anywhere, climb - always very, very active.  And suddenly - I can remember it happening -

(3) I became very lethargic and tired.  And I can remember my mother nursing me quite a lot - I would be sleeping on her lap - and giving me far more attention than the others, you know.  Obviously she could see I wasn‘t well.  And this went on for quite a few weeks.  Eventually - I always had quite a nice appetite, you know, I was rather dumpy as a child - I can remember not wanting to eat very often.  I can‘t remember the terrible thirst.  One of the things they tell you: "look out for the thirst", you know.  I can never remember having that terrible thirst at that time, but I had sickness and loss of appetite and loss of energy - that‘s the three things that stick in my mind the most.  And I can remember then… I can actually remember - must have been very close before I went into a coma - I can remember being in the front room, my mother was nursing me, and severe stomach pains.  I can remember screaming with… I can remember actually screaming - I can remember myself crying with the pain.  And after that, really, I must have gone into a coma, because the next thing I knew, I actually woke up and I was in the Cardiff Royal Infirmary, and I‘d been unconscious for over three days.  And the reason I got there: my auntie, she was a matron in the - it‘s the Dewi Sant Hospital now - but in those days it was called the Central Homes.  It had a terrible name, you know.  She was the matron there, and she said to my mother "you should call the doctor in"... oh, I‘m sorry, I‘ve...  When I actually came round, my mother told me that they‘d sent for the doctor.  He‘d been numerous times before and said "keep him warm", and he had no idea what was wrong, but he was convinced that I would - a couple of days‘ rest in bed - I‘d be all right.  But gradually got worse, so eventually my auntie said "you‘d better get the doctor".  This was about eight thirty in the evening.  Well, eventually they traced him down to a local drinking club, which was called the Hopkinstown Club.  He was not totally drunk, but very well far gone, you know.  So, he came to the house, and he told my mother that he thought I had double pneumonia and to get as many hot sweet drinks down me as possible.  So, when he went, my auntie said "he‘s wrong, you must get a taxi and get…".

(4) Well, I can‘t even imagine where my mother got the money for the taxi.  I can‘t even remember asking - I wish I had - but the money was so tight in those days, that to get me to Cardiff - it was the Cardiff Royal Infirmary.  The local hospital, which became East Glamorgan Hospital, wasn‘t built and opened till 1948, and this was in ‘45.  So, against the doctor‘s wishes, they took me to Cardiff Royal Infirmary, where it was diagnosed.  A doctor by the name of Professor Watkins - I always remember his name - and by all account he hasn‘t died…  He was ninety odd years of age, he hasn‘t died that long, somebody told me.  But my mother told me that while they were there with me, they lined up quite a long, perhaps thirty or more young students, and he wanted them to try and diagnose what was wrong with me.  And she said - it would be so obvious today, I could pick it up myself - not one of those were able to say that it was sugar, you know, diabetes.  Not one of them was able to pick it up and say what it was.  That‘s how rare it was, really, because, I mean, the cure, I think, only came 1934 - the insulin - so they didn‘t really have any idea.  But eventually I came round, and just, you know, injections all the time.  And even in hospital, I realised I wasn‘t getting much to eat.  Once I picked up a little bit, and I thought… well, I got hungry fairly quick, you know, but suddenly realised they‘re not giving me much to eat.  Obviously I can see why now, but even in hospital, at that age, I was hungry all the time.  I can even remember, at that young age, taking something off somebody else‘s plate.  Somebody who could eat quite normally and have a big plateful next to me - I can remember being so hungry that when he sort of turned away or left it for a moment, taking something off that plate, just to satisfy my hunger, you know.  And I was in there for quite a few weeks.  I know I can remember crying to come home, and I couldn‘t understand why I was having these injections all the time, and eventually they did let me go home.

Were you in a children‘s ward?

I was in a children‘s ward.  I can even remember the name of the ward - it was Coronation Ward in the Cardiff Royal Infirmary; yeah, it was all children, yes.

Can you remember being taught how to do injections?

I can remember, yes.  For a long time... I wasn‘t actually taught.  For a long time my mother did it, and one night my mother had to go somewhere, and I was getting older now and I

(5) tended to want to do things where your parents would compliment you and give you a little bit of praise.  And I can remember saying to my father "Dad, I think I‘ll try and do it myself tonight".  And it took a lot of courage, at the time, sticking a needle in yourself.  I probably was about ten at the time, and I was so proud of doing it.  My mother come home, you know - "tell her this", you know - and she probably would be rushing home, you know, to make sure I had it.  That‘s how it started, so I wasn‘t actually taught.  I just, by watching her doing it, and from then on I did it myself.  I never ever, from that young age, I never let my mother do it; I did it myself.

So, they must have taught your mother in hospital?

Oh yes.  I think my mother wasn‘t very happy - she didn‘t like needles.  But yes, I can remember my mother having a couple of sessions with a nurse, being shown how to do it.

How often were your family allowed to visit you?

Well, at that time, I can remember my mother or father used to come every other day.  That may have been because they couldn‘t afford to get there - I‘m not quite sure; I never thought to ask ‘em that.  Cardiff from Pontypridd was probably quite expensive then, so if I saw them every couple of days, I think that was... may have been because of the expense; I don‘t know.

Can you remember what you were taught about diet in hospital?

As a child, I really can‘t, because, even when I came home - I was, I think, seven at the time - I don‘t think I realised for a long time that I was on a diet.  I can remember my mother telling me "you mustn‘t eat cake and biscuits and sweets", but again, I thought "that‘s just for a short period until I get better".  And that‘s how it went on , because, I think if they‘d have told me at that age I wasn‘t going to be able to eat them at all, I‘d have been pretty upset.  But I was convinced that this was just for a few weeks until I got better.  I used to say to my mother "Mam, how long have we got to keep having these injections?", "oh, not for much longer now".   And it went on and on and on, and eventually, you just don‘t ask any more and you keep doing it.  But diet-wise, I can‘t ever remember being on a strict diet, because that‘s the thing I find far different today - they tell you the amount you can eat, the amount of insulin that you should take with it.  In those days, you had your insulin, you ate, and if you was full of sugar between that and the time of the next injection, it was hard lines.  You just was waiting for the next one... the insulin to come, you know.  That‘s what I could never understand.  They never sort of upped the insulin, and said "look, if he‘s not having enough to eat, Mrs Jones, give him a drop more insulin".  It was ten units - or whatever it was - and that‘s what they stuck to, and you tried to eat around that, you know.  But today, they tell you "look, if you‘re not eating quite enough food, have two more units of insulin", which, to me, it‘s such a basic fact, I can‘t believe - even in those days - nobody ever came up with it, you know.  You were going hungry to try and sort of balance up the amount of insulin that you were having.  It seems stupid, you know.

(6) Can you remember what you were taught about testing for sugar levels in hospital?

Well, what I can remember, it was purely urine in those days.  There were no blood tests - it was just urine.  You were supposed to do it a couple of times a day, but I think the fact that my mother had a number of children, I wasn‘t probably watched as closely as I should have been.  I think, quite often - being as young as I was, not realising how important it was - I can‘t ever remember testing it much.  If I was sort of full of sugar, I‘d just go and drink a lot and wee a lot, and nobody took much notice.  Eventually I did go into a couple of comas.  I can remember being taken back to Cardiff in a taxi again.  I can remember being sick in the back of the taxi, woke up again a day or two later, and that was purely because, probably, I hadn‘t been checking my sugar levels.  My mother…  I can‘t imagine, today, that they‘d be as lax.  Well, my mother obviously either hadn‘t been told, or just hadn‘t cottoned on to what she was supposed to do, you know.  In those days, life was hard.  But it was just the urine test, which isn‘t a good test, because - I don‘t know whether you know - but when you... I could virtually be on a hypo now, and if I went and did a wee sample and tested it, it could be full of sugar, because that wee has been in you for a lot of hours.  You‘d need to pass that out, and then the next wee would show the condition you was in at that time.  Of course, in those days, you‘d test the urine, it would be full of sugar, and perhaps your insulin was just kicking in.  You‘d think "oh, I‘d better see about getting some more insulin", and next you know, you‘d be having a hypo, because...  A lot of ignorance in those days, from memory; an awful lot of ignorance.

Can you explain about the urine testing - what you did?

Well, I can remember, yes.  It was…

(7) We‘d have a little test-tube, and there was just a little drop of water - I can‘t quite remember how many drops - and five drops of urine.  That would mix, and you would drop - I had a bottle of tablets - and I would drop a tablet into the mixture then.  And it would start off blue, then go to dark green, then to light green, then to yellowy-green, and eventually to bright orange, which meant, you know, that you‘re full of sugar.  And more often than not, when I was a child, that‘s how it was, yeah.

And did you continue with the same diet of chips and bread for lunch?

I did, but I did notice that my mother cut down drastically on the amount I was eating.  There wasn‘t a great lot... I mean, you couldn‘t get salads - you just couldn‘t get it, you know, it wasn‘t about.  The staple diet was bread and potatoes, and that‘s virtually what people lived on and could afford to live on, and that‘s what would fill them up.  But I can remember, as a child, often being hungry, to the point I would get food without my mother knowing from somewhere, you know.  If I went to a friend‘s house and he‘d offer me something, or if I had pocket money - which wasn‘t a great lot - but again, things were cheap.  I‘d even go and buy a bar of chocolate without my mother knowing, just not realising what the illness was, you know.

Had you had any diabetes in your family before?

There was one case.  My father had a sister, and I can remember him telling me about her.  She died, because she died before the insulin was discovered - it must have been in the late twenties.  She was in her twenties - middle to late twenties - and my father said all he can remember that she was continuously drinking.  So, eventually, the doctor… they referred to it as the drinking disease.  And that‘s the only other person in the whole family.  I‘m one of six children, my father was one of nine or ten children, my mother was one of four - no history at all.  I was - that one auntie - but since the discovery of insulin, there‘s just me.  But I can remember the doctor telling me…  Actually, when I got married - before I got married - we went and spoke to the doctor, Susan and myself.  And he said "if you had children" - we asked him what the situation would be - and he said "through our records, we have realised that it‘s far likely, if there was a further case in your family, likely to come out in one of your brothers‘ or sisters‘ children, not yours".  Why that is, I don‘t know, but I‘ve got one daughter, which she‘s fit and well, so there‘s no problem, at the moment, there.

Can you remember how people reacted

(8) when you came out of hospital?

Well, they reacted sympathetically, I think, because I think most people thought I was going to die; no doubt about it.  So, I had a lot of attention and love and pampering, you know, off, you know, off neighbours.  But just that, you know.  A very... a lot more attention than I would have had if it hadn‘t happened to me, you know.  But the difficult part, again, was, I noticed - perhaps in the old days - not too often, the money wasn‘t about - but somebody would give you a sweet or a chocolate or an apple or an orange - all that stopped, and I realised "nobody‘s giving me anything anymore", you know.  So, I thought I was being punished, and really they were just doing what they‘d been told, you know - not to give me things to eat.

What was it like when you went back to school?

When I went back to school, I did tend… was embarrassing, really.  I mean, I was probably home quite a long time.  I probably was - before I got back into school full-time - I was probably nine or ten, you know.  But I can remember it was embarrassing.  The teachers being a lot more softer with me than the other pupils.  Some may get the cane, and I‘d do the same thing and I never got the cane.  I was being treated like some sort of... suddenly I was going to break, you know.  And so that stuck out in my memory, that… embarrassing.  The other children would give me a lot of stick, and say "well, you know, you‘re teacher‘s pet or teacher‘s favourite.  You‘re not getting punished when you do the same thing as us".  So, I can remember... And being asked quite a lot of times "are you all right?" if I was a bit drowsy, or... I mean, the insulin, in those days, it wasn‘t very good, so I would perhaps get very, very tired, and virtually perhaps go to sleep sometimes in school, and...

How often did you have injections?

Twice a day, but, of course, the - it was called single strength, I can remember that - it was so weak that, say I‘d have it at eight o‘clock in the morning and have my breakfast, by dinnertime that insulin - there was no doubt about it - was run out.  And then I‘d have my dinner, plus something small in the afternoon - full of sugar.  But nobody ever said "well", you know...  The attitude was "well, you eat what you like until the next insulin is due", and that‘s how I lived for a lot of years.  I think the fact that I was young, and I did become quite active again, I probably burned up a lot of sugar, which probably saved me a lot of problems.  I started playing football again, and you can burn up quite a lot of sugar, because I know that through experience if I work around the house now.  If I have a day and I‘m not well, and I just sit down here doing nothing, my sugar will stay pretty level, you know, or even go up a bit.  But if I go down and clean the windows, before very, very long, I should think I need a biscuit, or you start to feel very ‘not with it‘ - tired.  And I know instantly, then, I need to have something to eat.  So, I know that using energy does burn up sugar pretty quickly.  Even thinking.  I‘ve noticed it where, if you have to sit down and a lot of mind work, that will also make the insulin work quite quickly.

Did you change school or stay in the same school?

No, I stayed in the same school the whole time; right until I left.

Any idea when you would have started playing football again and leading a more normal life?

Yes, pretty quickly, in fact, because I can remember this Professor Watkins, he did encourage my mother that not to wrap me up in cotton wool, that I should carry on as a normal life, and don‘t be afraid to let me go and play in the park.  And so fairly quickly, I would think - within probably the first twelve month, I did start acting quite normally again, you know.

(9) This was before the creation of the National Health Service in 1948.  Can you remember what treatment you had to pay for?

I think my mother... you had to pay for the insulin.  I‘ve got to be honest: cotton wool, I think, as I said, we managed without it.  One of those things, we just used a clean handkerchief or something.  It was... everything was so expensive.  Methylated spirits: it was a purple strong mixture.  My syringe and needles used to be kept in it in a glass dish.  The needles were big and thick, and I‘d use the same needle, I can remember, because things were expensive.  My mother must have had to pay for insulin, the syringe, the needles.  And the needles, because money was short, I can remember using the same needle until it was virtually blunt, and it got quite painful.  So, that‘s a big change, today, the fact that you change the needle every time you use it, but short of that...

Did you have to pay for the hospital visits?

Yes, my mother... we had to pay…  Twelve miles, it was, to Cardiff.  I can remember…  We didn‘t go that often - it wasn‘t as if we went every day.  I think, perhaps, we used to go once a month, unless, of course, my mother thought there was something wrong, and then they‘d tell her to take me.  But I can remember going in the old double-decker buses.  And my mother had to pay for that - there was no help with the bus fare.  My father, he did work in the mines and he did work seven days a week, so I think they were able to cope, you know, but it must have been a strain.

Do you think you actually had to pay the doctors in the hospital?

No, I‘m fairly sure - however they got around that - but I‘m fairly sure my mother didn‘t pay the hospital anything.  Something I never really thought to ask my mother at the time, but I can‘t ever remember them saying that she had to pay the hospital.

And was all your treatment from the hospital in Cardiff, or did you go to the local doctor?

No, at the time all the treatment was from the hospital.  I just went to the doctor‘s for prescription, to pick up whatever I needed, but all the treatment was from the hospital.

(10) Did you have many hypos when you were a child?

I didn‘t have many.  And I think the main reason for that was the insulin was rather weak, and, I would say, eighty percent of the time, I was far too much sugar in me.  But occasionally I did have them.  If they ever did happen, it was usually in the night, in my sleep.  And my mother would check me, and I‘d be - you tend to do a kicking motion, you know - so she‘d know instantly, and my colour, and I would be soaking wet, as if I‘d been in a bath and got into bed without wiping; absolutely dripping with sweat.  But not many as a child, mainly because there was always an awful lot of sugar.  I really did abuse myself, even though not always realising it, but.

And how long were you on that very weak insulin?

I would think it was a very short time, because I can remember saying to my mother "I don‘t feel very well".  I would think, from memory, not much more than a year.  I think once the insulin was discovered, they got onto a double strength very quickly.  So, I‘m fairly sure, even while I was still at the hospital getting treated - it came from the same hospital, the double strength - I can remember the label changed from yellow to blue.  The two colours stick in my mind, and the number forty being on the blue one.

What was the number on the yellow one?

Well, all my life the number twenty four stuck in my mind.  I used to think, because it‘s double strength, whatever number it was, it would double, but it didn‘t work like that.  They went to the forty, but I‘m virtually sure it was a yellow label on a bottle and it was twenty four, single strength.

And how‘s your insulin gone on since then?

Oh, the insulin has improved tremendously.  I mean, there‘s such an array of insulins now, you just wouldn‘t believe it.  Nearly always, when you‘d had your insulin, you need to give it fifteen minutes start before you had your food.  Now there‘s an insulin - Actrapid - you can inject, you can eat within seconds of... it works instantly.  So, the array of insulins is tremendous.  They‘re quick working, they‘re long lasting, so many different types, so I did find that a big improvement in my health.  Once the insulin was lasting a bit longer, I felt much better, you know.  I started the soluble insulin - the double strength one - very shortly after the complaint was

(11) diagnosed.  I stayed on the double strength until... soluble insulin until 1975.  Then they introduced a long-lasting insulin, which was called Isophane, so there was a mix then: the same forty soluble I was on, and the Isophane mix, that dragged the insulin out; it would last virtually all day.  I stayed on that until 1992, and then they introduced insulin called Human Actrapid and Human Monotard; one was quick working, one was slow working.  I stayed on that until 1995, and I‘m now on a Human Mixtard 40/60 strength, and that‘s the one I‘m on at the moment.

Did you notice any changes when you changed from animal insulin to human insulin?

I did notice a difference, but most doctors will not accept the fact that I definitely didn‘t get the warning symptoms that I used to get.  But you tell any doctor that, they just will not accept it.  I wasn‘t getting the sweats, I wasn‘t getting the pins and needles in my hands; lots of little early warning symptoms disappeared.  But you try and convince a doc...  I think they wanted to introduce this insulin at all costs, and they weren‘t going to let little things like that get in the way, you know.  But they would never admit that that was the case.  But, I mean, if you were the person, you‘d know whether you‘re getting the symptoms or not.  But that was the main difference - the early warning symptoms did seem to disappear.

Can you talk about leaving school?

I can remember leaving school.  The thing that worried myself - well, my mother and father more than myself - I was young - was that, with this complaint, all employers would look upon it being a risk, you know, and liable for anything that may happen to me, you know, because you‘ve got an illness that you could black-out, or…  And they weren‘t so advanced in those days - it could happen, you know.  So, eventually - I used to go to a Sunday school locally, and one of the Sunday school teachers there - I was very friendly with him - he worked on the railway.  And one day, I‘d broken up - I was fourteen - broken up for the holidays.  I wasn‘t going to go back to school, because I was fifteen during the holidays.  And I can remember him coming to the house one - it was August - I can remember it was August, because of my birthday - and telling me that he‘d like me to go for an interview for a job on the railway.  So, I was very, very excited, so - locally in Pontypridd - so I went down for the interview.  They didn‘t ask me anything about my medical background, at the time, and I started.  I started - I was like a messenger boy in the office, and I did that for a couple of years; I was quite happy.  And then, as I got older, I realised that, after you‘d been working on the railway for so long, that you‘d need to have a medical.  So, this worried me greatly, because I was very happy there.  So, I thought "how am I going to get around this?".  So, I got quite well-known there and well-liked by a lot of the older men, and two of the men that were on the union and that, they had a lot of say in the place.  They had me down with the boss one day, and they told the boss that they wanted him to pull every stroke in the book they could to get me a regular job and get through this medical.  So, he obviously had a contact with the doctor, so they arranged for me to go for this medical, and I went down for the medical to Cardiff.  And I can remember, I was so worried about my job, I can remember - perhaps I shouldn‘t be telling you this, but I‘ll say it anyway - I can remember taking - I can‘t remember which brother - but taking one of their wees, not my own!  So, I put one of their wees in a bottle.  Mine might have been all right on the day, but I thought "I‘m not going to chance it", so I took this bottle of wee.  And when I got down there, everything went well - "oh, marvellous condition".  So, I passed the medical.  I may have been okay, but I wasn‘t going to chance it.  The doctor‘s dead and gone now, probably, so I won‘t get him into any trouble.

Did you mention that you‘d got diabetes?

Yes, they knew I

(12) had diabetes.  They knew it, because this was the set-up, they wanted me to... they even told me "now look, try and be on top form that day.  Don‘t eat too much, don‘t drink too much.  Make sure, when you go down there now, that you are very much like a normal person.  Don‘t give a sample and be full of sugar or black-out while you‘re being examined", you know.  Eventually, I got... yeah, he passed me as fit, and I worked there, on the railway, for over thirty years, and very, very happy.  So, that‘s my memory of starting work.  The other thing that I can remember, which did go against me: I started work… actually, I started on my fifteenth birthday.  I started on the Monday, August the tenth, and that was my actual fifteenth birthday.  I can remember very, very shortly after starting there - this did go against me, I often feel that - I used to suffer with ingrown toenails, and, of course, with diabetics, they used to want to be very careful with the feet.  And I had to go to - which is now - East Glamorgan Hospital; local, only fifteen minutes from here.  That‘s only just closed, by the way.  Went out there with my mother.  They looked at my toenails, said "yeah, we‘ll have to do them".  While I was there, tested my wee, which I think I‘d stopped doing totally by the time I was fifteen.  I used to play football and sport, and as long as I felt all right, that‘s the way I lived for a lot of years; neglecting myself something awful.  But they kept me in, so I thought "oh... couple of days in here".  They did my toenails.  Well, believe it or not, I was in there twenty six weeks.  They could not stabilise me; they just could not stabilise me.  General feeling was because of my age, changes in my body.  But they very rarely messed around with my insulin, it was always my food.  In the end, I was having so little to eat, I was starving, and they never ever suggested giving more insulin and giving more to eat.  So, I was in there twenty six weeks, and in the end - I was breaking my heart in there - and I‘ll tell you a little story.  While I was in there - I‘d been in there probably eight to ten weeks - when you‘re on the ward, the day shift would normally end - or the afternoon shift - at eight thirty in the evening, and the night shift would come on at eight thirty.  Then there was always a conference, as you know, discussing patients, so I knew at that time they‘d all be in there.  Now, they told me a couple of days before I could go home, and then some doctor changed his mind, so I was pretty upset.  But my clothes were there, so, while they were in the office together, I went up the linen room, as it was called, and all my clothes were there.  I dressed, over my pyjamas, and I

(13) was gone.  I went down over the fields.  I was... oh, I was like a convict on the run - I can remember being up against a wall when a car or a bus came.  And I waited for a bus to come, and I got on the bus, which was probably five or six miles from Pontypridd, and got the bus to Pontypridd.  Then got off the bus in Pontypridd, ran to my home, which is probably ten minutes away again, knocked the front door.  My mother opened the door and she nearly fainted.  They did not know I‘d gone from that hospital until my mother rang ‘em and told ‘em, and they... some sort of crank.  She said "he‘s here with me".  So, I can remember going back that day and a doctor examining me, and he checked my heart.  He said "it‘s a waste of time" - the pounding was so great - so I‘ve got vivid memories.  I‘ve got a photo, in fact, of the time I was in there in 1953, so that was about ten weeks I was in there, and another sixteen weeks after that.  And eventually my mother went and said "now, look, he‘s going to lose his job", so I thought that really would go against me, you know, because they were starting to enquire if I was going back and when I was going back.  They let me out, and I don‘t think I ever went back again.  I attended a couple of outpatients.  The big change I find today and then, when I used to go out there to see a doctor, there‘d be more doctors than patients.  I‘d go there, there were three or four doctors waiting to get hold of you, you know.  I can remember just waiting for one doctor to come and see me alone.  You go there now, and there‘s hundreds, you know.  So, I went once or twice, and my toenails came all right, and I just stopped going again; I didn‘t go for a long, long time again.

How long after you started work were you admitted to hospital for twenty six weeks?

Well, I started work at fifteen and I was in hospital at fifteen, so months, at the most - just a couple of months before I was gone all that time.  But fortunately, it was before I went for this medical - all that sort of happened afterwards.  I was probably eighteen or nineteen when I went for the medical.  As a boy in the office, they left me there.  When I went outside and there were lorries and trains, it became a different cup of tea, you know - far more dangerous.  And they‘d be sort of want a guarantee that nothing was going to happen to me, you know, and I could never get injured or killed.  But yes...

(14) What did you do after you stopped being a messenger boy?

Well, I actually stayed in exactly the same place of work, but I moved outside - it was a goods yard, parcel deliveries.  Trains would come in and shunt all the wagons.  I actually went to be - what we called in those days - a checker.  I‘d be responsible for labelling all the wagons for different destinations throughout the country, responsible for ordering rolling stock - people that would order different types of containers, factories, big industrial area around Pontypridd - responsible for the types of wagons and containers that they‘d need.  But, in general, that sort of work.  But it was... I was still in an office, but out on the yard, where I would have to go on to the yard quite often in the day.  But a lot of clerical work as well, which would be - cabins we used to call them in the old days - railway cabins, you know.  Quite cosy and comfortable, but worked in and out.  And I did that, well, for quite a few years - quite a lot of years - until the actual yard closed, and then I went to Cardiff, doing the same sort of work, really.

How did you get on with your diabetes in that work?

Well, again, pretty well, because I was using a lot of energy, and if anything, the sugar wasn‘t a problem.  When I was in work, I always carried a sweet with me, and if ever I was going to go anywhere where there may be danger, I always had a sweet in my mouth.  I never went anywhere - if I was going in between wagons or where there was a train moving about - I… especially if it was a period before my meal was due.  If I‘d just had a meal, I knew I‘d be right for quite a few hours, but I could work it quite comfortably, you know.  I can‘t ever remember being ill in work, you know, so.  Probably would have been problems if I had been, but I can‘t ever remember.  I was very, very over-cautious, you know, about not being ill in work.

Did you have any social life?

Well, social life, I mean, cinemas, football, in general that was it - sport and cinema.  There weren‘t many dance halls or discos; nothing like that in those days.  It was the cinema or any sport you tended to conjure up yourself, you know, with your friends.

Did you have girlfriends?

I never had a girlfriend until my early twenties.  Believe it or not, one of the reason for that, I was very, very conscious of my complaint.  I never ever wanted to tell anybody I had it.  It worried me a lot.  If my mother used to say in front of somebody "he‘s diabetic", I used to be really upset - I‘d be really angry with her.  And I felt the same about having a girlfriend - what would they think once I told them, you know?  And, believe it or not, when I did meet my present wife - she was working opposite where I used to work - and one of the cleaners working there - she knew me and my family - and she virtually made a remark to Susan that seemed very much like a warning, you know - "do you realise he‘s diabetic?", and it really upset me.  So, that made me pretty cautious about girls, from an embarrassing side of it, you know, thinking "well, I‘m dumping him, he‘s diabetic", you know.  So, for a long, long time, it did put me more to stay with the boys.

How did your wife-to-be react when she was told you were diabetic?

She didn‘t... she was actually told before I told her, but it wasn‘t a problem.  She never ever looked on it as a problem.  When we realised we were courting strong, we got married within a year of meeting each other.  We spoke to the doctor about the families, and he said there was no reason he could think of that, as I said, more likely to come out in one of my brothers‘ or sisters‘ families.  So, we never ever had, or her family, never ever brought it up, or… it didn‘t worry anybody; it was good, you know.

How old were you when you got married?

I was twenty five and my wife was nineteen, so I was six years older than her, yes.

(15) What job did you do after you were married?

Well, for many years I did the job - a checker.  I went from there to a foreman, and eventually to a supervisor.  It was in a parcel department, which covered a fifty mile radius from Pontypridd, so it was quite a big depot, and a job which I liked - I enjoyed.  Never had any problems with my health with it, so everybody was happy.  I did that job probably up until 1979; the same job.

And how did you get on with your diabetes?

I coped very well, because one of the problems I had - I can remember a consultant in the hospital getting rather angry with me, until he sort of realised the situation - in the old days, there weren‘t many night workers.  But eventually, moving with the times, even jobs that were always day and afternoon jobs introduced night shifts, and I happened to be in that category.  And I can remember going and seeing him, and he said "well, how on earth do you expect us to stabilise people that are eating different times, twenty four hours a day? You know, they eat afternoons, days, nights - they‘re eating at different times.  It can‘t be done".  So, I said "well, it‘s either that", I said "or I retire", and he climbed down immediately.  He said "well, I do sympathise and I understand that, you know, you need to work".  But I wasn‘t sort of... I didn‘t work to the book - I never did with my complaint.  Those people who were sort of religiously insulin and diet, exactly the same, and so careful... I, sort of, wasn‘t hard and fast, so it wasn‘t a problem.  I used a lot of energy, so that in itself burned up a lot of sugar, and I got away with it.  The other thing is, if I felt that I was in a job where there was any danger, I always used to have a sweet in mouth; always had some sugar on me.

Can you remember roughly when night shifts were introduced?

The job I was on, I would say it was introduced in about 1964 - that‘s the year I got married; that‘s how I can remember.

So, perhaps doctors weren‘t so used to shift workers and advising them.

No, they weren‘t.  You could tell.  The reaction, this... his name was Dr Oliver - I could tell.  He was aghast when I told him I would have to introduce a night shift.  He was unhappy about it, but he did understand by the end of the discussion that that‘s the way things were going, you know, and there were probably many more like myself coming behind.  So, he did sort of meet me half way.  It wasn‘t easy and it wasn‘t exactly as he wanted it, but that‘s the way it had to be.

How much contact did you have with the medical profession during your working life?

Not much.  I tended to sort of try and look after myself.  If there was a small problem, go to the GP, but, in general, I didn‘t... I would say after 1953, I didn‘t get involved with a hospital until into the 1970s.  I just didn‘t have anything to do with them.  I can remember being told "it‘s time you went for a check-up.  As you get older you‘re going to meet problems, you know, with your eyes, your feet", so I think that did frighten me a little bit, as I was getting older.  And that‘s really why I started back to the clinic, and I‘ve gone ever since.

(16) You mentioned working in the yard until 1979.  What happened then?

Well, it was a body blow to me, really, because it was a job I‘d been in since I was fourteen years of age - fifteen, I started the day before my fifteenth birthday, so I was fifteen, really - been there ever since that.  Always happy and enjoyed it, and I found out they were going to close the place down, so it was distressing at the time.  I‘d never known anything else.  It was a job where, if there were problems at home, I could pop home - I was living near.  But I didn‘t finish on the railway.  I went to work in a booking office, which I stayed in until 1981, where I then had health problems, and didn‘t work after that.

And how... you said that you weren‘t really checked until the 1970s, so had you not had your feet or your eyes checked at all between the fifties and the seventies?

No, never.  I just totally kept away from the place.  Fortunately I wasn‘t having problems.  I‘d have probably had to go sooner, but never any problems with my feet or my eyes; my vision was excellent.  Nobody ever suggested - the GP - nobody ever suggested you should… there is a danger, if your eyes are not looked at - checked regularly - nobody ever suggested to me that there was a problem there.  So, I just never ever went for treatment again, until the seventies.

Tell me why you retired in 1981.

In 1981, I was then back at the hospital having health checks.  They then always checked the eyes, the feet, and they noticed that there were too many blood vessels appearing in my eyes.  I‘d never heard of that before - nobody had ever mentioned it to me, but, by all account, you would then need laser treatment.  The excess blood vessels - they just burn them off with a laser.  So, I then started having that treatment.  I kept working for a while, and then my right eye haemorrhaged, and it meant that I had to go into hospital - for a few weeks, I thought.  It ended up I was in there eight weeks.  But while I was in there, the doctor said that once the eyes haemorrhage, there‘s a big risk, you know, of… any physical work whatsoever... can be very, very careful, and he suggested that I shouldn‘t work again.  I had quite a lot to do at home, in my social life, and that it would be very unwise to go back to work.  So, I sort of heeded his advice, and I retired there and then.  But I just had to prove to the railway that I wasn‘t going to be able to - after getting a pension - going to be able to work somewhere else.  It needed a letter off the doctor to confirm that probably would never work again, and then I finished.

How old were you then?

I was forty three.

And how did that affect your family life?

It didn‘t really affect my family life, because I had my - I say old age pension - I had my old age pension much earlier than I would have normally, so that, and the allowances I was getting, financially I was able to cope all right.  In a way… it suited me, in a way, because my wife was very ill, and I was virtually running the home, as well as working, doing everything, the shopping, the cleaning, doing everything.  So, it did make life a lot easier for me - I had far more time to look after myself.  So, really, all in all, it was a blessing in disguise, if I can use that phrase, you know.  The other thing that made things easier, I had a daughter who was five years of age at the time - she needed to get to school.  It was a problem.  Being so very young, needed to be taken to the bus every day, so I was able to do that, and look after her as well as my wife.

(17) And how has your health been since you retired?

Well, health has been quite good, really.  I‘m able to look after myself far more; I‘ve got more time.  I‘m fairly active.  The house has quite a big garden to look after.  I also do most of the chores at home - the shopping and the cleaning.  Burn up quite a bit of sugar, so that helps.  So, really, I would say my health is much better than when I was working.  I don‘t sort of neglect myself half as much as I used to.  Never really short of anything to do.  People say when you retire, you die, but myself, I have found always something to do; not a problem at all.  So, I‘ve been quite happy since I finished work, really.

How has your eyesight been?

I‘ve lost the sight in the one eye - the eye that haemorrhaged.  The other eye is remarkably good.  At the moment there‘s a cataract on there, which has been in a year or so, but, by all account, you can have a cataract and it doesn‘t develop.  It stays exactly as it is for a long, long time.  So, although it‘s been there for a year or so, my vision is very clear with the left eye - I can see everything I need to see.  Just have to be a little bit more careful, because, with the one eye, you wouldn‘t believe how... even hanging something on the clothes line, how often you miss the line with the peg.  But yeah, I can see.  If this one‘s kept well, I‘ll be quite happy, you know.  I get it treated regularly - haven‘t had laser treatment on it since 1991, which is good.  I go for a check-up every six months and ...

Are you still allowed to drive?

Yes, I drive.  I drive only in areas I know very well.  I don‘t go into strange places, cities.  I normally drive where it‘s very, very quiet, or locally, where I live, and if possible my daughter will do anything that I find might be a little bit risky.  Other than myself, I wouldn‘t want to put anyone else at risk.  So, other than the very day to day driving, she does it for me.

Do you have many hypos?

I don‘t.  I test my blood before I go to bed.  I can‘t say never - it depends.  Again, the thing with the insulin, which is very, very difficult for diabetics, it works depending on what you‘ve done

(18) during the day.  If, for example, I went to bed and my sugar was ten, that would be okay - sugar‘s ten.  But that day I may have been doing very little - I may watch the telly, just a little bit of dusting around the house.  Another day, I would cut the grass, clean the windows, go shopping, come home - I dare not go to bed with my blood sugar at ten, because I know - I would guarantee - that I would go hypo in the night.  So, it‘s very difficult to allow how much more to eat, because you‘ve worked on that one day.  Again, if you‘ve got a cold - any sort of stress - you wouldn‘t believe it.  If my wife is unwell, and really unwell to the point that I‘m really worried about her, my insulin just seems not to work.  I test my blood, it might be twenty five, twenty six, and I‘ve had nothing to eat.  Purely because of the stress or the illness, insulin just doesn‘t work properly.  And the other thing, again, because I‘ve had the injections for so long - I do inject around the clock, as they say - not going the same place - but when you‘ve done it for sixty years, when I inject, it‘s not absorbed the same as somebody who‘s had it a lot less time.  You would know it would be absorbed in half an hour.  With me, I‘ve gone days where I get up in the morning, sugar‘s quite low, very small breakfast, and by dinnertime my sugar‘s rocketed to seventeen, eighteen.  And it may be heading towards teatime before it drops, because then the insulin‘s kicking in, hours later than it should do, purely because the absorption is not as good as when you‘re younger, and your legs and arms and stomach just not had that amount of injections put in them, you know.  So, there are sort of things that get more difficult as you get older and the longer you‘ve had it, but I tend to be pretty careful.  When I go to bed I tend, perhaps, to eat more than I need to, because I just can‘t afford to risk going off in my sleep, you know.  So, that is a problem for me.

Does your wife recognise the symptoms?

Yes, she does recognise - she checks me.  She recognises it.  Even if I can get one word out to her - if I can just say "what do you want?" - the way I say it, she can pick it up within seconds that I‘m not right, just the way I speak.

Have you reported the difficulties over the injection sites and malabsorption to the medical profession?

Yes, I‘ve

(19) told them about it.  And, in fact, it‘s they the people that told me the reason these things are happening is because it‘s not getting absorbed; that‘s where it came from.  This is the answer they gave me when I said my insulin seems to be working at different speeds - one day it‘s instant, another day it‘s four, five hours before I can feel it kicking in, you know.  And the feeling when it kicks in is you want food.  You know.  Not hunger, but a feeling of "I could eat something now".  It‘s a warning, I suppose, but you know instantly when the insulin is kicking in; it‘s the way you feel.  When it‘s the other way, your mouth gets dry, you feel you need a drink, not very hungry.  And the change, you wouldn‘t believe how easy it is for me to pick it up and know it‘s kicking in.  And sometimes, what makes it awkward, it‘s kicking in not long before my evening injection is due, and that does cause problems for me.  But, you know, I get over them, I mean…  But I‘ve got to accept, you know, I‘ve had it a long time and I‘m running out of places to inject - new places.

Do you get your advice mainly from doctors or nurses?

I get it mainly from... I used to go once a year, and now I go twice a year, but always see a consultant, so really... If I wanted extra advice, there are now specialist diabetic nurses, so.  I have rung them up from time to time, but, in general, the one person I see is a doctor.  And the GP - they run a clinic.  I rang them recently, the nurses, because I went to Spain - very rarely go away, because my wife‘s ill - went to Spain recently.  And when I got there, I thought "well, I‘m not eating much" - my sugar was sky high all the time.  I thought "well, what‘s happening here?".  So, I rang them, when I come home, and told them.  I said "oh", I said "I don‘t know what‘s happening, but my insulin‘s not working any more".  And they told me that the fact that I‘d gone to a warm country, the insulin may have got warm before I got it into a fridge, and, by all account, that was the problem.  But I simply got caught out like that, you know.  Could have done a lot of damage in a fortnight, but…  So, I need to get... you can buy specialist containers now to keep the insulin cool, which again, although I‘ve had the complaint all these years, I don‘t tend to look into the depths of new inventions.  And how long that‘s been out, I don‘t know, but I‘d have to watch it next time.

Talking about new inventions, can you remember how you‘ve changed the monitoring of your sugars?

Well, the only thing is, the pen for testing your blood is so quick.  Before you‘d have to get a drop of blood, wait two or three minutes for it to read.  Now, it‘s a pen that you can carry round with you.  You just prick your finger, you put it in this little machine - which is no bigger than a calculator, a small calc... or small mobile phone - and you‘ve got a reading.  So, really I can test it every hour, so far better record of how I am, you know.  I mean, if I... like me to use it here, for example: I could test my blood just before you came, and think "well, I‘d better have something", before you came, or I‘d know I‘m going to be all right.  But in the old days you had no idea.  So, can test far more frequently with very, very little problems, you know.

Can you remember when you changed to the pen?

I can‘t remember the actual date, but I would think I‘ve been on it five years, I think; five years at least.

(20) Now, many people with diabetes, of your age, would regard their partner or spouse as their carer, but in your case, you‘re actually the carer for your wife.  So, how does that work?

Well, she‘s got a severe illness: anorexia.  She‘s had it since she was twenty five.  She was always a weight-watcher when we met, so I knew that, but she was fit and well.  But as the years have gone on - and she deteriorated very, very quickly back from the early seventies - she really is barely alive.  A doctor told me in 1984 "she won‘t see Christmas"; she was about four and a half stone.  So, virtually, instead of me having some help, I virtually had to take over looking after myself and looking after her.  She‘s not capable of going out on her own or doing the shopping, she can‘t do the ironing.  She can do a bit of dusting, but cleaning-wise the making the beds and changing the beds, I have to do it all.  So, the biggest problem I‘ve found over the years, when it comes to mealtimes, you‘re trying to look after her, you‘re tired, and for a lot of time - not so much the main meal, but perhaps dinner time - I think "oh, I‘m too tired" or "I haven‘t got the time".  I‘d have a Kit Kat with a cup of tea, for example, a biscuit, a piece of cake - no good at all, because sweet stuff like that works very, very quickly.  Carbohydrate will drag itself out and give a far longer period of time to be able to do things.  But it was time, you know, and not feeling like doing it.  You wouldn‘t want to cook for one person - think "well, I‘ll have a Kit Kat now and I‘ll be right until tea time", so...  And again, in the nights, the thing that worries me: if I have a hypo, she‘s not strong enough to lift me.  And as everybody probably knows, you can‘t feed a drink into somebody that‘s lying down - it goes into the lungs; and would choke you, so...  My daughter was a big help when she was here, but she‘s gone now, so it‘s just myself and my wife.  So, again, I do abuse myself a little bit, because I need to make sure that I‘m not ill in the night, so, again, I would tend to eat a little bit more than I need to, to go to bed.  And eighty percent of the time I don‘t need that food I‘m eating; just to make sure that I‘m not ill in the night and she can‘t cope.  So, you do tend to neglect yourself a little bit.  Although she‘s ill, she watches me.  She can tell instantly, so I‘m quite capable of doing everything, but not always realising that I‘m going hypo.  Not enough warning - maybe on a ladder cleaning the windows, and she‘ll always sort of talk to me every few minutes.  And she can tell instantly that I‘m either slowing down or I‘m doing nothing on the ladder or I‘m talking a little bit stupid.  So, during the day, I do what I like, because she‘s watching me.  Even if I‘m cooking by the stove, she‘s there all the time.  But, of course, in the nights it‘s different, we’re sleeping.

Have you talked to anybody about your worries about night time?

Yes, I spoke to the GP about it, and he knows my wife very, very well - he knows the situation.  I told him that she‘s not capable of lifting me, and he suggested that - it‘s like a glucagon - you inject glucose into you.  He said, as long as she doesn‘t mind giving the injection, that would be the easy way out.  So, recently, now, I‘ve got one of those injections here, so - if there‘s a problem - so I can take a little bit more risk.  I don‘t like having hypos.  It‘s just an awful feeling when you come round.  It‘s just something that, after it‘s happened, you think "oh, I‘d do anything to avoid one of those again".  And again, you tend to overeat a little bit, but the injection is a big asset, because easier for her and I can relax a little bit more.

Has she used it yet?

My daughter‘s used it, but my wife hasn‘t actually used it, but she says she doesn‘t mind doing it.  But the once I needed it, my daughter was here, so…  But she‘s getting married next month, so she won‘t be here.  But Susan will use it if there‘s need.

(21) Can you reflect on the changes you‘ve seen in the treatment of diabetes over the years?

Yes, well, I tend to take more note now than ever I did, but I notice, one of the biggest changes is that they now like to inject diabetics four times a day - not twice.  And I can see the reason for that.  I mean, when I inject in a morning - that covers breakfast and dinner.  So, if you go out after breakfast, you‘re sort of worrying - whatever you‘re doing - will you make it home for dinner, or you‘ve got to take something with you.  But, if you‘re sort of injecting before each meal, that would eliminate that problem, so I think that‘s a big asset.  I think, perhaps, he wouldn‘t want me to do it, because I haven‘t got a lot of space left anyway, so to do it twice as much, may be a lot, you know.  It‘s something I‘m going to discuss with the doctor.  But that, I think, is a big, big asset.  People go out, they have their food after the one injection, virtually do what they like, knowing they‘re not going to have a hypo till they have the next one, and then there‘s a meal after that.  It really is a good thing.  The other changes I‘ve noticed...  The other thing I‘ve noticed is that - for example, with the pen injection - until fairly... well, until the last couple of years I had to pay for those needles.  And what I found out from medical staff, they‘d been fighting with the government for years to get the needles on the National Health.  Drug addicts and people like that, they got them free, and I think they felt it was very unfair that diabetics were paying.  We were paying, I think, twelve pound for a box of a hundred.  Now, that‘s finished with, so we don‘t have to pay for the needles.  So whereas again I used to inject four times with the same needle - I now, I use one every time, which is what they recommend.  But changes, I think, in the actual injections, the size of the needles - they‘re so small and fine you can carry ‘em round with you like a fountain pen in the pocket.  Before it was a big glass syringe.  There was no way, really, you could take it out with you and keep it disinfected.  It was sterilised.  It was in a big dish of methylated spirits, which stunk, you know - the old purple methylated spirits; very, very strong.  So, really, you couldn‘t carry it around with you and keep it sterilised.  And again, you‘d have to go into a toilet, you know, to do it, and now you just lift your shirt.  You‘ve got this fountain pen in your hand, and you just inject and nobody even notices you‘re doing it.  So, vast improvements in the utensils we use.  And the types of insulin.  I mean, at the moment, now - if I‘ve got a cold, my sugar‘s always high - I think "well, right, I‘ll have a drop more insulin".  But when I inject, you‘re injecting the quick-working and the slow-working, which I don‘t need - I don‘t need any of the slow-working.  But because I can now - I keep both types of insulin here - because now I can think "oh, I‘m not very well, my sugar‘s high.  It may kick in in a couple of hours time - I don‘t want any more long-lasting insulin in me" - I have a couple of units of the quick-working and it makes me feel better straight away.  So, big improvements in the types of insulins, you know.

Have you noticed any changes in the way doctors or nurses relate to patients over the years?

Well, the biggest thing I‘ve noticed is - and I can‘t believe that even back forty years ago, fifty years ago, they didn‘t realise it then - is that you don‘t go hungry.  You have more insulin if you want more food.  I‘m not saying they encourage you to get fat, but not to go hungry.  And they stipulate - I go to the clinic now, and nurses will say "well, are you having enough to eat?".  Or, on a Christmas time,

(22) everybody breaks the rules.  I mean, I can remember the doctor telling me one time "diabetes is the most abused illness on this planet".  One of the reasons for that is, when there is sugar in you, you - not too much, but when there is some sugar in you - you definitely feel more well than when you‘re on that thin line of hypo and being okay.  That isn‘t a nice feeling, you know, you feel high.  So, if I‘ve got a little bit of sugar in me, I can work and behave like a normal person.  But the minute I‘m down to the level they want - seven and under - I really need to be careful; I can‘t live a normal life - I couldn‘t do what a normal person could do.  But that, in itself, being such a simple thing to work out: more food, more insulin.  That is the main thing I‘ve found, that... so simple and yet a big thing, you know, that you could eat what you want, within reason, and still be okay, you know.

Have you noticed any changes in the National Health Service?

Well, the main thing is that we pay for nothing, you know.  That is by far the biggest change.  I mean, I pay for nothing at all.  I mean, the amount of cotton wool and lancets, colour strips, syringes - everything free, you know.  I mean, when you‘ve had it as long as I have, and you realise that, never mind paying for them, you couldn‘t even get those things at that time.  So, really, I suppose, I did more damage to myself in the first twenty years of having the illness.  It‘s now that I‘m sort of coming to the end of my life all these things are available for you, you know.  And probably, because of the life I lead with my wife, I probably don‘t know about half the things that are still available.  I don‘t read the magazine from the... I never got time to read it.  I never have any contact with the Diabetic Association, and there‘s probably far more advanced things that I‘m not using.  I mean, recently I read in the paper you can now do an injection without a needle; read it last week.  You put it against your body, and the force…  So, anybody afraid of a needle, there‘s no need to use it any more.  You can... and it‘s on the National Health, again, so that is really advanced, you know.

Have you ever thought about what your life would have been like if you hadn‘t had diabetes?

Well, I‘ve often thought… all my life I‘ve thought "why me?", as if to say it‘s the worst thing that‘s in the world.  And for many of my younger years, I really hated the illness, especially if I‘d have a hypo, you know.  I felt there was a lot I couldn‘t do.  I always wanted to sort of - when I was on the railway - I always wanted to do a driving job, which was immediately out of the question, so

(23) I felt I‘d lost out a lot in my working career by having the illness.  I think, in a way, in the end, lucky to get a job, because the laws weren‘t like today - you know, they cater for the disabled.  Not in those days.  If anything wrong with you and any risk, you wouldn‘t get a job.  So, I think I lost out career-wise - I think I really lost out, and often think, if I‘d have been fit and well, my life would have been different, you know.

Do you have any message for somebody newly diagnosed with diabetes now?

Well, the main thing, with the advance of the insulins and different gadgets, I think you can lead a very normal life, without even feeling you‘re diabetic.  You can live a long life.  I mean, I‘ve lived all this time, and virtually broken every rule in the book.  If the doctors knew half that I‘ve done, they would be...  I go to the clinics and they say to me "now look, it‘s very, very important that you work to the book - for your eyesight, for your feet, for your general health".  I thought, if only they knew how well I have been over sixty years, and I have virtually crucified the conditions: diet, drinking and weeing, going without my insulin for hours after it was due.  And I feel, sort of like, standing there and I say "well, I may have been the lucky one".  I probably am.  I wouldn‘t recommend that anybody does what I did, but I can‘t honestly say I‘ve really felt ill.  The way I lived, if I had my life over, I couldn‘t imagine me changing the way I lived, you know.  I wouldn‘t sort of not do things because it may affect my health.  Even if I was warned of that, I think I still would probably do what I did.  I can remember during my late teens, perhaps even early twenties, that I‘d become very, very thirsty.  And there was a little shop locally where I lived.  I‘d go down there, I‘d buy about half a dozen flagons of lemonade.  And I‘d come home, and I‘d be so thirsty - obviously my insulin was required, but not time for my insulin.  And in those days, when my insulin wasn‘t due until six o‘clock - this might be three o‘clock in the afternoon - I‘d think "oh, I‘ve got to wait till six o‘clock.  I‘m awful thirsty" - I would drink those... literally drink those six bottles of lemonade, and sometimes I‘d even go and get more.  And all I would do, until that insulin was due, I would drink and wee non-stop, just to quench my thirst, which was a thirst that you just... would be like being in the desert.  It was tremendous thirst.  I think if you thought you were going to kill yourself, you would still drink - you‘re that thirsty.  But to do that for years and years and years, until I realised, you know, I‘m not doing myself any good here.  Something I did and got away with, but please, don‘t anybody follow that; it would be a disaster.  It‘s something that I did and I‘d just like to mention, but highly advised to take another road.


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