27
KIT
different. No one really understood
what diabetes was as it was not that
common. I remember often going
low before lunchtime when we
sometimes had PE. I had a school
report one year where the PE teacher
had said', it's unfortunate that she's
often ill when doing sports'. The fact
is that no-one knew about diabetes
and what brought on hypos."
Gilkes adds, "I failed my
Economics exam when I had a bad
hypo on the way and was not allowed
to take it another time. I remember
other people got 'birthday bumps'
at school, but we didn't. I don't
expect we missed much, but it was
because they were not sure if they
should because of the diabetes. The
world has changed so much since
then… now there is information
but you have to be careful not to be
come overloaded. The technology is
brilliant, but how much more of it do
you want? I don't think I need one
and do not think I want a pump."
As a result of there being far
better knowledge of, and education
about, living with diabetes, both
Stanton and Gilkes have done faceto-face
DAFNE courses. "I found
it extremely helpful, I needed a
reminder, and I still get occasional
updates from the course," says
Stanton. "I did it too, it was really
good," adds Gilkes. "The best thing
about it was learning about carbcounting.
I was the oldest one on the
course and the person who'd had it
the longest too."
Stanton has the Carbs & Cals app
on her phone which she regularly
uses. Gilkes notes, "Eating out is very
hard as you're guessing the carbs, so
I tend to just choose salads for the
main." Adds Stanton, "Plus it's hard to
inject under the table in public if you
have a dress on!"
Stanton was the first of the pair
to go on an Abbott FreeStyle Libre
sensor. She says, "I had to do a lot
of blood tests in order to get the
Libre. I think I'm micro-managing
since going on it and was told I was
managing things 'too low'. I find
that some nurses are very 'textbook' about it,
'the number has to
be this'. That's too rigid and does
not show enough understanding of
what it's really like to live with it all
the time, all day, every day. Gilkes
adds, "Someone I knew once said to
me, 'You should be paying for your
prescriptions', but I thought why? We
did not choose to have diabetes. It's
just another form of other peoples'
ignorance that you have to shrug off."
Says Standon, "Plus we don't want
it to be about our diabetes all the
time. It's not nice, but it's not the end
of the world. We just want to live our
lives as best we can. Jan's had it for
more than 60 years, and I've had it
56."
Gilkes also ended up on a Libre,
partly as no other CGM was available
from her health service at the time.
Stanton added that while she was
still working, she paid for it herself
until she went part-time. At that
point she could not afford it but her
husband paid for her to have it until
the rules changed and she qualified
for it on the NHS. She says, "I get
rather ratty when I'm low, but much
less so now I'm on a Libre. Although
I have to say that I'm finding it quite
hard to find Jelly Babies in the local
supermarket to keep near me just in
case. I've had both hips replaced and
I found the pain, in my hips and in my
back, is much worse when I was low,
under 4.5mmols/l. I do sometimes
let my diabetes run a bit high as it's
easier to live with."
Highs and lows
Talking about the highs and lows,
Gilkes says, "My husband has to put
up with my hypos, but they are fewer
now I'm on the Libre. I don't do many
blood tests anymore, but I still do so
occasionally. Jackie and I both feel
very lucky to have got this far."
"Yes," agrees Stanton, "Challenges
are part of life. We've had challenges
with our health, but also in our work
and careers. It's just the way it is."
As well as both being on Libres,
the twins also both have their
Nabarro medals from Diabetes UK for
having lived 50 years with the Type 1
Diabetes.
Although both are married,
neither have had children. Gilkes
says, "I met my husband a bit later
and I was 40 by the time we tried for
kids, but it didn't happen." Stanton
says, "My first husband and I weren't
overly bothered about having
children. We've since divorced and
I've married again, but to be honest
in the back of my mind I think I didn't
want to pass on the diabetes.
Gilkes has the last word with
Stanton nodding along in agreement,
"We've done very well in all. I can
say that I wouldn't have wanted
to go through what our mum did
while trying to look after the two
of us in those days. But now I
really appreciate the technology.
Sometimes I spot other people
wearing Libres when I am out and
about. I think it's great. This tech is
reducing the burden on the NHS,
now it's much less work for them to
try to keep us well."
This tech is
reducing the
burden on the
NHS ~ Jan Gilkesmy diabetes kit
Dedicated NHS Diabetes Advice helpline
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