People with Diabetes
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Tom
Family member
Born in London in 1987.


Overview: Tom`s mother, Gillian, is a single parent with Type 1 diabetes and Tom remembers that from an early age he was given his uncle`s phone number to ring, in case his mother had a hypo. In fact, he rarely had to do anything more than bring her some chocolate and it wasn`t until his sister, Natasha, was diagnosed with diabetes in 1999, that he began to learn about the disease. Natasha was six at the time and Tom was eleven: since then he feels that he has played a significant role in helping his mother to manage his sister`s diabetes.

There is also an interview with Tom`s mother, Gillian.
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Transcript...

<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, I‘m nineteen, and almost twenty.  And my Mum is a single parent, who has brought me up by herself, and my sister, who has diabetes.  And she‘s a journalist.  And I‘ve been to state schools.  I think that‘s about it, really.

What are your earliest memories of diabetes?

Well, since I was born, my Mum has been diabetic.  So, my very earliest memories, I guess, are the sort of very confused memories of running around, sort of at the age of three and four, and you start to realise slight differences, maybe, from your... well, from my Mum from other... maybe my friends‘ parents, that the fact that there may have been syringes around, maybe there‘s sort of insulin in the fridge, maybe very slight differences.  Just the sort of background that you live in may have been different from other households.




(2)  What do you remember your mother saying about diabetes?

I think, certainly when I was very young, between sort of three and four, I was very much protected from most of... from any responsibilities regarding diabetes.  I would have been... my Mum would have tried to keep me away from telling me too much about it, for certain.  One sure thing I do remember is that I was given my uncle‘s house telephone number, and we wrote it down on some stickers and put it around the house.  And that was, obviously, in case she would have a hypo, at some point.  If she had... if I wouldn‘t be able to wake her up, maybe, in the morning, just to obviously to ring that number.  But I think, generally, that‘s a sort of good idea, in general, if you know what I mean.  In any household, there could be an accident, and for young children, it would be a good idea to have that sort of thing around the house.  I remember, at a very early age, being fascinated with the blood sugar machine, the reader of blood sugar levels.  The one she had back then - a huge, sort of, clunky machine - which would take ages to actually read the blood sugar.  But, I mean, I didn‘t, obviously, really know, particularly, what it would have meant, but I remember being really interested in which number was going to appear; you know, it was more like a game than anything I understood.  But it was certainly... I just remember it very clearly, the machine itself.  I also remember, on occasions, maybe when if my Mum woke up hypo, and if I was near to hand, she would ask me to bring up a chocolate bar or something.  And I certainly realised, at that age, that that was quite an important thing and quite a serious thing, that...  I mean, obviously I didn‘t feel any huge responsibility from it, but certainly it was kind of a duty for me.  I do remember that quite well.




(3)  There are two other sort of small events that I have been told by Mum, not that I actually remember them myself, but kind of two examples of how I may have reacted differently to her diabetes.  One was when a doctor had visited, because she was pregnant with my sister.  I remember she… I was asked to look after her, at one point, and I said very confidently "I am the man of the house", which made her laugh and the doctor laugh a lot, and sort of shows how maybe I did understand a bit of the responsibility, and sort of liked it, to some extent.  But, on the other hand, slightly later - I think, maybe, six months later - there was a similar story, where my uncle - I think my Mum must have still been pregnant - and my uncle said "you need to take care of Mum now", and I said "no, I‘m not doing it" and stormed out, which maybe suggests I was feeling that responsibility a little bit, and actually didn‘t like it, at points, but.  Around the same period, I remember my Mum had to go into hospital for… she had a benign tumour in her neck, which she needed to have removed.  And I remember that being a fairly big deal, and quite a sort of stressful time.  But I do remember having the whole... my sort of lack of understanding of diabetes, and all these things, you just sort of have a general picture that there‘s something a bit different about Mum.  And I remember getting that completely confused with diabetes, the fact that she was in hospital a lot of the time, and having this operation, and thinking it was to do with her diabetes, when maybe it was complicated by her diabetes or something, but I don‘t think it really was related at all.




(4)  What other memories do you have of your mother‘s hypos?

Well, I certainly, as I was growing up, remember hypos very clearly being a thing I had to learn about and understand.  But I think my Mum must have dealt with them very well, because, obviously, when you‘re hypo, you can lose control of yourself, and you can have a very short temper and get confused.  And I think my Mum definitely… I don‘t remember anything about her really getting… taking anything out on me, if you know what I mean.  She wouldn‘t be in a hypo and be shouting at me.  But I do remember, on the more humorous side, sometimes having arguments with her when she wasn‘t hypo, but be having a normal household argument, and I‘d tell her that she needed to do her blood sugar or  that she needed some sugar, because she was being unreasonable, if I thought that.  But, in general, she certainly... I learnt about hypos, and we‘d occasionally have to help her out, but, in general, I didn‘t have to take on a lot of that responsibility.

Did you know anything about warning signs, or when she might be going to have a hypo?

I don‘t think that with my Mum, until... I think I mainly would have learnt that when my sister had been diagnosed.  With my Mum, she would tell me that she was hypo, and she‘d usually sort it out herself, probably, but maybe I‘d have to get her a Penguin bar, at some point.  I don‘t think I would have really recognised it in my Mum and told her that.  It would have been more that I would have joked, maybe, if she was being stressful or unreasonable, at any point.

This may be something impossible to remember, but in those years when it was just your Mum with diabetes, would you say there was a sort of atmosphere of worry and tension, or was it all quite laid back?

I definitely wouldn‘t say there was an atmosphere of worry that I strongly felt.  The fact she had diabetes, it could add to other things, possibly.  You know, when you‘re a child, and at certain points you might think everything‘s falling apart, because you didn‘t hand homework in that day, and Mum has a lot of work and is very stressful, and she‘s had a hypo, or something like that.  It might be something which would add to that… just the sort of everything going on.  And if you‘re at one of those points, where you really think everything‘s going wrong, then it could add to it, but it was never something which I‘d worry about by myself, if you know what I mean.  I wouldn‘t hold it back, you know, get pent up worries about this.  It would just be sort of part of the general background of everything else that was going on.




(5)  How did you feel about your Mum having diabetes with people outside the family?

Well, a lot of people will have come into contact with my Mum‘s diabetes.  And certainly, when I was young, for my friends of the same age, it would have been probably their first contact with something like that.  For instance, seeing her doing… having an injection while they were round my house, or something, will have been quite a shock.  My Mum would have always said, at the time, "I‘m going to have an injection, you don‘t mind", and I guess that different friends, well, certainly had different reactions.  Some might have been squeamish and gone in the other room, but, in general, it was all sort of light-hearted and sort of quite humorous, really.  She will have made it the humorous thing: she would have made jokes about it and made everyone feel at ease, rather than it being something to hide or something to worry about.  I also remember... I mean, one of the funniest things - well, certainly what my friends found funny - was having needles and insulin in a section in the fridge.  They would have been really surprised if they‘ve gone in for a yoghurt, or something, and found syringes there.  But that was definitely just a really humorous thing; it was just something different.  I guess… I‘m sure I would have liked it, you know, something different about my household and something interesting.  Another thing - the sort of outside world sort of contact with diabetes - would have been restaurants, visiting restaurants a lot of the time, where they‘ve been a bit of a… there‘s a sort of a dilemma there, because, on one hand, she would have sometimes, to do her injection, she would sometimes go to the toilet, and sort of hide it away.  And then, sometimes she would, depending on her mood, she‘d be the complete opposite.  She‘d say "well, I have to have these injections, so they… if they see, they have to deal with it themselves", and she‘d just, sort of, just done it under the table.  And that was always something we talked about quite a lot: whether she should, you know, whether it‘s polite to go to the toilet and do it.  But we never really would conclude on anything about that, we’d never really know, but often she would go to the toilet, just because it‘s, you know, nicer in a restaurant.

So, was she ever a source of embarrassment to you?

Oh yeah, I think all parents are a source of embarrassment at times, but her diabetes was never a reason for it.  That was always just… it was just interesting; it was never a source of embarrassment.




(6)  So, those are your memories of your Mum‘s diabetes, before your sister was diagnosed.  Can you now talk about your sister‘s diagnosis?

Yeah, well, she was diagnosed in 1999, when I was eleven and she was six.  And her diagnosis was definitely a really big deal.  Mum had been worrying about it for a few weeks, just the usual signs of weeing a lot and drinking a lot.  And I remember she kept on wanting to do a blood sugar on Tasha, but really couldn‘t be brave enough, because I think we probably knew that these were the signs and it was fairly obvious, but.  And then, when we did get round to doing the blood sugar, also that was a really big thing that I remember really vividly, because my uncle was round.  And the way they just say "high" when you get the result, that was... Mum couldn‘t hide how upset she was, at that point, and had to leave.  And I just stayed with my uncle for… while she went out somewhere.  And it was certainly... it was a really sort of worrying and nasty evening, I remember.  And she must have gone to hospital that night, and I think I stayed at home with my uncle, just for that day, and went to see her the next day.

And what are your memories of the hospital?

Well, my Mum spent the whole time with her - or at least my Mum and Dad did - and I only spent a few hours on the two days, I think it was, that she was in hospital for; I only spent a few hours there.  And I remember generally being… maybe not thinking a lot about the fact that she had diabetes, but the fact that both Mum and Dad, and Tash, to some extent, were upset and worried.   I mean, I remember the moment where she had to have - it probably wasn‘t the first one - but she had to have an injection of insulin, at some point, when she was at the hospital.  And I remember her sort of refusing, at first, to do it, and then realising that she will have to do this for the rest of her life, she‘s going to have to have several injections a day, and that being... well, the moment for her, when she was told that, was quite a big moment.  I remember one interesting comparison, when we came out of hospital, how my Mum had said to Tasha that she had only been there for... Tasha had only been there for two days, whereas when my Mum was diagnosed, which was many years before, she had spent a whole week in hospital.  And it had been an extremely big event, whereas those two days were quite… you know, they weren‘t such dramatic events.  It was just taken care of quite quickly and easily, and she was put onto insulin, and that was that.




(7)  I also should have mentioned the fact my Dad was down.  Although my Mum‘s a single parent, he, at that point, would have spent most weekends in Cambridge, just for the weekend, just seeing me and Tasha.  But for an event like this, for something like this, he would certainly come down for the week, and… just for the support that was needed generally around the house, for everything that was going on.

Do you think the time of diagnosis was quite traumatic for your sister?

Well, I certainly think it was quite traumatic, to an extent.  I think she probably didn‘t... I‘m sure not everything sank in.  I mean, she was very young, so I‘m sure not everything sank in all at once.  And the hospital did extremely well.  She was in the children‘s ward there, which was extreme... you know, it was a really lively, fun place.  It was colourful.  It had… I remember being, for the short times I visited, I remember spending a good percentage of them on the computer games that they had there!  And I‘m sure Tasha did as well, which… I‘m sure that really helped take everyone‘s mind - well, me and my sister‘s minds off it - and made it a bit more relaxed.  I‘m sure that helped with my parents, as well.

How did your sister adjust to having diabetes after she got home from hospital?

Well, I think it certainly took a long, long while, and still today, you know, she‘s still adjusting to all the different things, all the changes that have to be made.  But certainly, the idea... first of all, the idea of having to have - at first she was on two injections a day - and the idea of that was very difficult for her, at that young age.  I mean, obviously, from the very beginning, she would have experienced hypos.  But to understand that she had... although she, in herself, did not feel unwell a lot of the time, but still had to have these injections, would have been really difficult for her, because it‘s quite a strange concept, if you think about it from a young person‘s point of view; it‘s quite a difficult thing to get your head around.  I think injections were something she overcame quicker than blood sugars, in a way, because as soon as she‘d understood that she has to have these injections - literally, she has to have them at these times - I‘m sure… I think she got used to that a lot quicker than the blood sugars, because blood sugars, she could talk her way out of, to a certain extent.  I mean, Mum would certainly never let her not have an injection, because that just can‘t be done, whereas a blood sugar, she might say "oh, have it tonight rather than now" and "I‘m not going to do this many today".  And I think, at first, that was certainly what there were most arguments about, and most tension, really.  She started, for a long while - and even today, she‘s doing it more - having the blood sugars before bed, because the big worry being that she‘ll have a hypo while she‘s asleep, and that‘s where it‘s most dangerous.  So, if you‘re saying that she would only have one injection that day, it would always be at night.  But that becomes really unhelpful for the hospital, because you don‘t see the sort of trends during the day.  So, there was a lot of talk and argument, and things, about the blood sugars.  And often Mum would bribe her with things, say "oh, you can have friends to stay over, if you do enough blood sugars this week", and would continually be doing... trying sort of new sort of programmes, almost: you know, having a little booklet to write them down in.  And they‘d - sort of like little phases - they‘d work for a while, and then Tasha would lose interest in it, and it would stop working so well.  But, in general, she‘s been fine.  It wasn‘t... there were times when there were lots of arguments, and it could be quite stressful, but, in general, it wasn‘t at all.




(8)  You mentioned being bribed with being able to have friends to stay the night.  What are your memories of friends‘ reactions to diabetes?

Well, her friends have obviously played a huge role in, sort of, her diabetes.  She‘s like a really sociable person, spends probably 90% of her time with friends.  And at first, obviously, I know Mum had several or many discussions with her friends about what it meant, and sort of teaching them a few things about diabetes, because, to a certain extent, they did have a responsibility of Tasha.  And different… there‘s some friends, which I remember, have been really, really good, who sort of… often even take my Mum aside today, and sort of ask her "how‘s it going?  Is there anything I should be doing?" and things like that.  And on the other hand, maybe friends that aren‘t such close friends, but who she spends a bit of time with, maybe less useful, who don‘t know as much about it, who don‘t know my Mum and haven‘t spoken to her, will be… maybe that they‘ll have sort of sweets on them.  I‘ll see them coming in, and they‘ll have their arms full of sweets and chocolates, and… which can be really unhelpful.  But she‘s got a huge variety of friends, who all help in different ways.

What about when she goes to stay the night with friends?

Well, that‘s been a sort of continuing debate, and at first, there‘d certainly be only the sort of closest ones that we could really rely on.  It would be mainly to do with the parents, because Mum would have to explain the responsibility.  I mean, especially when she was first diagnosed and her diabetes was all over the place, and it‘s a really big responsibility for the parents.  And my Mum was definitely grateful if they were willing to take on that responsibility, as long as they really sort of understood exactly what it meant, and what to do.  So, she‘d always write a little letter, a few instructions or something, just in case anything went wrong, and make sure she had our phone number.  And I remember one weekend where Tasha actually went away for the weekend, with a family that we were quite close with.  And that was a big deal, spending the whole weekend, and Mum wanted lots of phone calls from Tasha with the blood sugar results at each time, and each night, to make sure she was having the right food.  And I remember - and she‘d obviously spoken to the parents and made arrangements - and I remember when she, on the times that she did get the phone calls, she wasn‘t happy.  Either Tasha hadn‘t done the blood sugars, or she wasn‘t ringing when she was meant to.  And the parents of the friend she was with weren‘t… they really weren‘t encouraging Tasha to do that, when I‘m sure they‘d been through it all.  I remember when Tasha got back from that weekend, she wanted to… Mum was really wanting to go round and speak to them about that whole weekend, because she wasn‘t happy at all about it.  But that created quite an argument, because that would have been horribly embarrassing for Tasha, and I definitely took Tasha‘s side on that one, I think.  Although, it sort of needed to be, for future - anything in the future, like another weekend like that - it would have needed to be cleared up, that it‘s more serious than they had taken that weekend.  It would have been much nicer, for Tash, to make sort of a smaller deal out of these things, so that she doesn‘t feel like she‘s special, in any way; so she‘s not making a big thing out of diabetes.  She doesn‘t want diabetes to be a big thing about her; you know, the smaller you can make it the better, I think.




(9)  You talked, in that case, of siding with your sister against your Mum.  What‘s been your role, in general, regarding your sister‘s diabetes?

Often, in order… sort of, the many numerous little debates that diabetes brings up - for instance, one of the larger ones, one of the more important ones being when she was moving onto three injections; moving from two injections a day to three.  That had been a huge debate, going on for months, and being brought up every now and again by the hospital, by Mum.  And in that case, when my Mum had practically given up, and didn‘t seem to be able to convince her, she asked me to talk to her.  You know, sort of the difference between your Mum telling you you have to do this, and maybe I had to play the role of the brother, sort of being… you know, talking to her from a different angle, you know, trying to make her come round.  And in that instance, it did have quite a good effect.  It wasn‘t directly that, but she did later go onto three injections quite soon after that.  And the sort of different approach I could have from being a brother, rather than a parent, did help quite a lot.  But, in general, that has come up a lot.  I‘ve talked to her after my Mum‘s tried everything, I‘ve then tried, and sometimes it‘s worked well, and sometimes she‘s literally put her foot down saying "no, I‘m not doing this.  I‘m not doing this many blood sugars", et cetera.

What kinds of arguments do you use with your sister?

Well, when I‘m with her, it will always be... it always has to be the health, sort of, option.  Just reasoning with her about this is to look after you.  A lot of the time, you have to make it clear that Mum isn‘t just being bossy about this, because it can seem like she does...  If Tasha doesn‘t quite see why she should be doing this, it can seem unreasonable that Mum‘s, you know, really, really pushing for her to do an extra blood sugar each day, or something like this.  And often, if I speak to her, it will be a bit calmer, and Tasha might be more reasonable.  And I might be able to get through to her that it‘s the health issue, rather than Mum just getting on her nerves and being annoying.




(10)  So, we‘ve talked about family and friends.  What about schools?  How have they reacted to your sister‘s diabetes?

Well, really, the two schools Tasha‘s been to - the primary school, and then the secondary school, that have sort of seen her through her time with diabetes - they have been the things… they have been some of the biggest issues with, really.  At first, with her primary school, it was the ignorance, at first, about diabetes.  I remember when she was first diagnosed, and Mum spoke to her primary school, they said something along the lines of "yeah, we‘re fine.  We know everything about diabetes".  And one famous quote was, they said "we had a diabetic several years ago.  He was always going high, so we‘d send him running around the playground", which my Mum was really astonished at how that could have been going on, and really worried by the fact that they did think they knew everything about diabetes.  And for that reason, it was really difficult to educate the primary school, at first, about diabetes, because they did think that they knew about it, and had been trained, or whatever.  Fortunately, it never led to any big problems.  She never had a huge hypo or any emergencies at school, but it was… certainly there were times when she got extremely annoyed with the school.  There were a few instances with teachers saying - when Tasha was hypo - saying she just had to wait till the end of the lesson to go and get a chocolate bar, which, I mean, Mum would explode the second she heard that.  She would go straight down to the school and talk to them again.  But, I mean, she only spent, it must have been a few years at primary school, and she never managed to make that really big change in understanding.  She did… the hospital did send a whole package, with all this information about diabetes, to the school, in the hope of educating them further, but that didn‘t seem to make a huge difference either.  I don‘t know who read it, or how many of them read it.  But the hospital were very useful, in the way they had that package ready that they could send to schools, but yeah, it didn‘t turn out to be particularly useful.




(11)  What about your sister‘s secondary school?

Well, secondary school brought us about another big change, because she was going there… again, she was starting anew, so you had to go through the whole thing again, really.  But because the secondary school was a much bigger place, it was quite a different issue, dealing with it there.  They had had much more diabetics that they had dealt with before, so they were, as a general rule, they were better educated in everything to do with diabetes.  But also, because it was a much bigger school, there was, you know, hundreds of teachers, who had different amounts of knowledge about how to deal with certain things.  And one of the big issues, when she started, was making sure all the teachers knew that she was diabetic.  And the fact that she had loads of different lessons with different teachers, and then sometimes there‘d be supply teachers, that made it quite difficult and quite an issue.  But it never led to any big events, except for a few more occasions when a teacher would say that she wasn‘t allowed to go out the classroom for a chocolate bar, or if she had… she would often take chocolate bars in with her, and then would be told off for eating them during the lesson, if she hadn‘t already said "I‘m hypo, I need to do this".  There were just a few… you know, it caused a bit of problems.  And Mum has visited them on lots of occasions, just like she did with the primary school, making a few little complaints, and trying to be as diplomatic as possible with them.  But she‘s been really annoyed with the school on different occasions.  And at secondary school, my time there and my sister‘s time there overlapped for just one year, when I was in my last year and she was in her first year.  And that, in a way, was helpful.  There were occasions when I‘d get a phone call from her, or one of her friends, saying "do you have any chocolate on you?  Tasha‘s hypo", but that would be at lunchtime or at break-time.  But, in general, I couldn‘t play a huge role, because, well, we‘d always be in lessons, and I wouldn‘t see her - it was a big secondary school - and I wouldn‘t see her around much.  So, I think my involvement with her diabetes at school only went as far as those few occasions, when I would bring her a chocolate bar from the canteen, maybe if she didn‘t have any money, so she had to ring me.  I think that‘s about as far as I was involved.




(12)  And how involved have you been at home, over the years?

I think the times I‘ve been most seriously involved have been the three times, when Tasha was between ten and eleven, or maybe ten and twelve, where she had really serious hypos during the night.  And my Mum would have found her unconscious at some point during the night, and she would have always woken me up straight away.  And my Mum, being a single parent, I had to take a lot of the role there.  She was - well, certainly the first, well, in fact, all the times, actually - she was very panicky during that.  And I think, at those times, I did play quite an important role of being more sort of calm, and trying to, you know, make a few decisions, in terms of that, because she… it would be really difficult for my Mum to keep completely cool, because she was a mother, I guess.  And as a brother, I was more able to keep calm about it.  And obviously, the things you‘d have to go through would start off with the HypoStop, the gel that you‘re meant to rub into her gums.  And I would find that - it would be in a special place - and start trying to rub it into her gums, but sometimes that would be quite difficult with Tasha.  She would, when she was unconscious, she would sometimes be fitting slightly as well; she‘d be moving around a lot, sort of uncontrollably, so that would be quite difficult.  Also, I remember after the first one, we had some people speaking at school, who... I can‘t remember what they must have been talking about, but at some point it came up that if someone‘s having a fit, never go anywhere near their mouth.  And I remember that instantly struck me, I instantly thought about Tasha having a fit from a hypo, and having to rub something into her gums, because, obviously, the worry is that your jaw can lock, and if your fingers are anywhere near your mouth, people have lost fingers like that, and things.  But it didn‘t change anything.  Still, when she had the other ones, that‘s what you have to do; you have to rub HypoStop into her gums.  And it‘s…




(13)  The Glucagon injections, which are the next option, if the HypoStop gel doesn‘t seem to be bringing her round, they‘ve always been a bit of a dilemma.  We‘ve always had them, and my Mum has always known how to use them, but she‘s always been really opposed to using them, like…  We‘ve never used them, but I think, certainly in those three times, they should have been used at some point.  My Mum - I guess it‘s kind of along the lines of a sort of squeamish thing - she really didn‘t want to do that.  And after the first time Tasha became unconscious during the night, I was… I went to the local GP, and was sort of trained in how to use it, and thought I‘d be fine doing that.  And there was a time in the second emergency, she… we did try to give her the Glucagon injection, but she rolled over just as we were trying to do it, and the needle bent in her leg, which...  And after that, it just occurred to us that it was a really difficult thing to do, so, in general, we would always try to use the HypoStop gel.

Did you call the hospital?

Yeah, that‘s also another of the dilemmas.  The hospital have always been really good, when we‘ve spoken to them about that, and say "just ring the ambulance as soon as you feel you want to, that‘s exactly what they‘re there for".  But I think, on all three of the occasions, we have ended up ringing the ambulance, but we‘ve always tried to do it first, and to sort it out ourselves.  But I think it quickly becomes clear that, when you‘re rubbing the gel into her gums, and it‘s been fifteen minutes and it still doesn‘t seem to have had any effect, we do realise it‘s time to ring the ambulance, because we never know…  It‘s always so difficult to know how serious it is, how long it‘s going to go on for, and whether it‘s dangerous not to ring the ambulance.  And whenever they‘ve come, they‘ve been really useful.  And sometimes it will take literally an hour, an hour and a half for her to come round.  And that, for me, was always the most worrying thing, because when, being woken up in the middle of the night and Tasha being unconscious, I was… I could always deal with that, because I knew about it.  I knew you just have to do this, and then she‘ll be fine.  But certainly the last time she had a hypo, and still after a Glucagon injection that the ambulance administered, and after loads of the HypoStop gel, and an hour and a half and she still couldn‘t speak.  She was still… she was moving and she was conscious, but she couldn‘t get words out.  That really sort of worried and kind of upset me, to an extent, because I was sort of thinking, at that point, whether there‘d be any sort of permanent damage.  I don‘t know if that‘s possible, or I didn‘t know if that‘s possible; it was just that was a worry to me.  But she‘d always come round, and then an hour later, she‘d be fine - well, she‘d have a horrible headache and not be feeling quite right - but she‘d be her normal self, at least.




(14)  You mentioned one training session with your GP.  Have you had any other outside help for dealing with your mother and sister‘s diabetes?

Well, from the NHS, I‘ve never had any training or guidance, other than that one training on how to use the Glucagon injection.  And I think, to some extent, because my Mum has dealt with diabetes all her life, and she‘s well-educated on everything to do with diabetes, I haven‘t needed anything, because she has always told me everything that I need to do.  I think for... in a different situation, if someone in a family is completely newly diagnosed, and no one else in the family has had diabetes before, then that would be a big problem.  I would have needed a lot of training... well, not training, but just to know… there‘s a huge amount of things you need to know about diabetes, and I would have needed sort of direct guidance from the NHS, or something like that.  But outside, actually, the NHS, I mean I‘ve... Tasha‘s had friends, who she‘s sort of quite artificially been set up with, because of diabetes, because Mum‘s, you know, thought it would be nice for her to speak to someone else with diabetes.  And I certainly remember one occasion, when she came round… when a girl of her age came round, who was diabetic.  I remember speaking to her brother, for just a few minutes, but certainly we didn‘t really discuss anything about diabetes.  I mean, we had a little chat, but just as you would with anyone else, really.  I didn‘t feel that I needed to… there wasn‘t anything I needed to get off my chest about it, or anything, because it‘s not in everyday life, it‘s not a big deal.  So, I think you don‘t have all these... in general, you won‘t have a lot of pent up worries, or anything.  It was nice to see someone else in the same situation, but we certainly didn‘t go into any emotional discussions about how it was, what life was like with a diabetic sister, at all.




(15)  I mean, she met a lot of people in her situation, a lot of people of her age, with diabetes, through the sort of - I‘m not sure what to call them, really - but the camps that the hospital advised; sort of adventure weekends and things.  I think she probably only went on two or maybe three of those.  But she was very opposed to the idea, at first, because, obviously, she doesn‘t want to make a big deal out of diabetes, and it would be strange if all her friends were diabetics, and she really didn‘t like that idea.  But she definitely had a really good time on them, and she did make friends, who she spoke to quite a lot.  I don‘t think any of them she‘s still speaking to today, she‘s still friends with, but definitely for a few years she met up with various people that she‘d met on these camps.  I don‘t know, really, how much it did help her, but the fact that she did speak to them afterwards must have meant it had some effect.  I think, although I said that the camps may make her feel sort of different and sort of special, in a way she doesn‘t want to, but also the opposite, she will have met lots of... she would have realised how it‘s more normal.  Maybe, because none of her friends she has at home have diabetes, it‘s nice to know there are lots and lots of other people in the exact same situation, so it must have been good.  I think the main thing is that meeting a bunch of people because you all have diabetes isn‘t… it‘s a bit... it isn‘t a sort of a cool reason for everyone to get together, really.  It‘s a bit… well, I‘d see it as a bit strange, really.  It‘s much more usual for everyone, if you have a similar interest, like tennis or some sports or hobby, to get together, then that‘s a much more usual thing.  But you‘d generally see getting together because of diabetes as a bit of a strange idea.

Have you had any sense, in your own life, of diabetes being fairly common?

Yeah, definitely.  I think it‘s popped up in my life in lots of different ways.  And I guess it does to everyone‘s, but for me, if I hear - a friend‘s friend from the year above who was diagnosed with diabetes about four years ago - and when I hear that, you know, most people wouldn‘t really take interest, but for me it‘s much more interesting.  One of my friend‘s dads, I found out, was a doctor involved with diabetes, somehow.  And all of those things sort of, when it comes into your life, it‘s quite interesting.  You know, you have a much greater interest than other people would.  And it‘s nice, sort of, having it around, knowing that it‘s quite a normal thing, and there‘s lots of things going on involving diabetes that pop up everywhere.




(16)  It‘s probably been different at different times, but can you reflect on how much you‘ve been involved in your mother‘s and your sister‘s diabetes?

Yeah, I‘ve certainly had a big involvement, as far as it‘s obvious that you would, but, on the other hand, it is something that they both live with, and you can go through huge amounts of times where it just doesn‘t crop up in life.  Tasha goes on having her injections and doing her blood sugars, and there‘s no arguments, because her blood sugars are kind of fine.  And yeah, there can be long periods of time when I literally don‘t have to have an involvement in it.  And then it will crop up, every now and again, and there might be a time when I do have to play a big role in something, and have to just focus on that for some reason.  And in those times, you know, I‘m fully involved in those times, you know, it‘s really important.  I sort of understand it‘s important, and it can really have a big effect on me, and a big effect on my life, at times.

What effect do you think it‘s had on you compared with friends who haven‘t got any illness in their family?

I don‘t think I lead a very different life to other friends, because of it, and I don‘t see any differences in me and my friends because of it.  But it‘s just one of those small things.  I can‘t... I‘m not sure of anything to… any sort of analogies with anything else.  But I‘m sure, just one of those things that is in the background of your life, really, and every now and again crops up and becomes important for a while, and then will fade away for a bit.

I know you‘ve just had a few months away before going off to university.  How have your mother and your sister coped without you?

To be honest, I think they‘ve coped absolutely fine, I think.  That‘s sort of the point: I‘m not 100% needed.  It‘s just the fact that if I‘m here, and there are problems, I will be involved, because I‘m part of the family.  But without me, I don‘t think they‘ve had to make many… they‘ve had to adapt, really, in any way, or make any big changes.  It‘s just that… with each other, they can look after... certainly Tasha‘s at the age now -she‘s fifteen - she can look after herself, and Mum can look after her, and Tasha can look after Mum.  So, they‘re definitely okay without me, but it‘s not to say I‘m not useful every now and again.



 

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