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Re: [IPk] Rant: Whose diabetes is it anyway?

I quite agree with you, and to this end, Charlie's school nurses and I
decided last term to hand over responsibility to him as we were definitely
taking control ourselves - and he was merely carrying out our instructions.
This has also been helped by the fact that when his pump nurse telephones
(was daily, now weekly) she always speaks to Charlie to discuss how he is
feeling and possible changes of basal rates. My husband (who has no memory)
found this new regime hard to learn - it is difficult to 'let go', but we
think, and hope that it is working. This half term holiday we noticed that
he was much more independent and needing no reminding at home for nine days
except for one canulla change.


----- Original Message -----
From: "Melissa Ford" <email @ redacted>
To: <email @ redacted>
Sent: Friday, March 07, 2003 12:46 AM
Subject: [IPk] Rant: Whose diabetes is it anyway?

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> Recalling my first couple of years with diabetes, it seems to me that
> instilling a sense of personal responsibility in a child who has it is a
> much more crucial step than achieving absolutely perfect bgs by any means
> necessary. What will happen if a child with diabetes who has been nagged
> do every test and every injection since age 5 or so goes off to uni at age
> 17 and suddenly doesn't have Mum or Dad or a teacher or a nurse looking
> his/her shoulder? Disaster, that's what. I've heard of four Oxford
> undergraduates admitted to the John Radcliffe Hospital in VERY bad states
> after alcohol-and-no-insulin binges within the past few years (and no
> there were more).
> Most Oxford undergrads are pretty clever. Why on earth would they allow
> themselves to get alcohol poisoning and DKA? Because in large part they
> viewed diabetes control as they did schoolwork, as something done to
> yet another authority figure, to be accomplished by the means provided. I
> have talked to a few Oxford students who believe that one HbA1c per year
> appropriate because that's what their GP said. They felt that if they
> weren't getting along all right on the regimens their doctors suggested,
> was their lot in life to feel crap while smiling as they won awards
> And these are future leaders in business, industry, technology, the civil
> service, academia, and whatever else.
> As I see it, if a child with diabetes does not acknowledge feeling
> physically ill with a hypo or a high bg, his or her 'locus of control' (to
> use a buzzphrase from a 'Women and Leadership' seminar I had to take in my
> second year at university) remains totally 'external'. Until someone with
> diabetes is able to say, 'I know I need to take my insulin when I need it
> because I feel bad without it and could suffer badly in the long term; I
> know I need to eat something when I'm low or I might get really, really
> sick; I know I need to test my bg or I don't know exactly what's happening
> inside my body', he or she is aiming at targets set by others and may feel
> no compulsion to shoot for them if the figures providing pressure step
> for a moment.
> I have been lucky to have always had an 'internal locus of control'
> regarding diabetes: as I was 12 when I was diagnosed, my parents have
> had to do so much as test my bg for me, much less give me an injection or
> change my pump set. I don't have kids and so can't comment on how hard it
> could be to do, but perhaps saying to one's son or daughter, 'How do you
> feel without any insulin?' when a bolus or injection has been missed and
> listening patiently to the answer might be constructive. If a child
> value his or her own perception of well-being but is on a quest to please
> Mummy, Daddy, and the GP, he or she would seem to me at high risk for
> someday rebelling against all he or she has been taught to do to keep
> his/her diabetes under control. If speed limit signs were taken off the
> roadways and the police were all on strike, what would motivate any of us
> drive slower than 80 m.p.h.? Only a rationale that we had accepted for
> ourselves, whatever that rationale might be.
> Q. How many psychologists does it take to change a light bulb?
> A. Only one, but the light bulb must really want to change.
> --And so it goes with the question 'how many people does it take to live
> with diabetes?' Only one, but the person must really want to survive.
> Viva la revolucion,
> Melissa
> IDDM 9+ years; MiniMed pumper 6+ years
> Co-ordinator, Oxford University Student Union Diabetes Network
> D.Phil. candidate, Faculty of Modern History
> Balliol College
> Oxford
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