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Welcome to the Starter Kit
So, by now someone's dropped the D word. Bugger.
All of this is produced by us - people who have Type 1 diabetes - some since we were tiny little tackers, so have heaps of wisdom to share. Some just a couple of months ahead of you.
The resource has also been critically reviewed and endorsed for clinical accuracy by 30 diabetes-specialist health care professionals from around Australia.
Top 10 things we wish someone told us the day we were diagnosed:
 It's
not your fault. Type 1 diabetes is an autoimmune condition. Something
goes whacky and your immune system gets confused. It gets this idea in its
head that the very precious islet cells in your pancreas that produce insulin
are actually a virus and it turns on them and kills them. We don't know exactly
why. But we do know that it has absolutely nothing to do with what you ate,
where you live, who you are or whether your mum stood on her head during pregnancy.
There is a genetic link but it's only one piece of the puzzle - even if your
mum or dad had type 1 diabetes themselves, there's only about a 5% chance
you'd have got it.
- Sugar-free carob tastes crap.
Go for chocolate in moderation
and save yourself the pain!
- You're not a freak! Getting Type 1 (or 'juvenile') diabetes
when your in your 20s, 30s, 40s or even 60s is way more common than most people
(including doctors and nurses) realise. Type 1 was called juvenile diabetes
for many years and got a bad name! So if someone says "ooohhhhh you're
old to get Type 1!" You're not alone, and they're wrong! Half of people
with Type 1 diabetes are diagnosed as adults.
- Insulin is not like taking a pill each day. You'll learn
how to change the doses, sometimes every day or every hour, to cater for different
things going on. But it's definitely not a case of here's your insulin doses,
go home and you're alone. Pretty soon you'll start to get the hang of balancing
your insulin dose with how you eat, drink and play - which changes every day
of course.
- There's this group of young adults who just happen to have diabetes
called Reality Check. The website has a forum where you can post
any question, read other people's experiences and really tap into what it's
like to live with diabetes and what real, normal people do. Check it out at
. Reality Check also runs a variety of events which
are a great way to meet other groovy young things who happen to have type
1 diabetes. Subscribe to their monthly-ish email newsletter to get updates
and news.
- Pepsi MAX is the best sugar-free cola. Diet Solo's pretty
good too.
- It's bloody hard work at first but not the end of the world.
People with Type 1 diabetes have won gold medals (Gary Hall Jnr), played in
World Cups (Rod Kafer), won Oscars (Halle Berry), sung to thousands of people
(Marcia Hines) and even won Miss America competitions (Nicole Johnson). We've
backpacked the farthest corners of the world, got awesome jobs, become millionaires
and politicians. And then there's the rest of us normal people who go about
our lives doing what we want and making diabetes fit in there. She'll be right
mate!
- It's actually impossible to keep blood sugars between 4 and 8 all
the time. Really truly. Those numbers were given to you as a guide
and the aim of the game is to keep them there. However, until you get yourself
a new pancreas, it is just impossible to not get the odd high or low (or lots
of them on a bad day.) Highs and Lows make you feel crappy enough without
you feeling guilty that you've stuffed up too. A good tip is to just think
of the number that pops up on your blood glucose metre (a.k.a. the blood test
lottery) as a Call To Action: if it's high or low, just do what you need to
fix it. But don't waste your energy thinking, 'Oh I'm bad, I'm wrong, I'm
crap.' Just fix it and get on with life. (Or if you're not sure what to do,
phone your diabetes team for some help.)
- Research is moving ahead at an amazing pace. You'll hear
a lot about 'the cure' for diabetes and while it's still a little way off,
the word on the street is that research has made more progress in the last
5 years, than in the 20 before that. We're seeing it with better technology
and developments all the time. So you've got good timing! Chat to someone
who had diabetes in the 1950s if you want to feel better about your lot -
scary glass syringes etc, not good, not good. The JDRF is a good source of news on research developments.
- People say really dumb stuff. You will find that everyone
you meet now has an Aunt who had diabetes and either had some amazing home
brewed solution to cure it, or died. Just brace yourself that people get weird
when they don't know what to say. We've all had times when we want to punch
a non-diabetic. It's the kind of thing you really can't totally understand
unless you've got it. So start perfecting your ah-huh, ah-huh, patient nodding
and fast exit. (We've also included a couple of copies of a one-pager here
that you can give to friends and family to save you turning into a broken
record.) <
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