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This week, the new school year starts for many kids and teens in Australia. I proudly watched our big nine-year-old walk into her new classroom – seemingly confident and secure. As parents, we know that with each passing year, we have to hand over a little responsibility as our kids grow up. We need to foster their independence and celebrate it, even at times when we want to bundle them up and try to protect them from the big bad world.

Today, my dear friend Catherine Forbes, writes about how her family is navigating independence with their fifteen year-old daughter who just happens to have type 1 diabetes. I love Cath’s attitude and approach because raising her beautiful girl isn’t about diabetes. It’s about helping her daughter be the best person she can be. Diabetes or not, I think this is relevant to all of us. Thanks for writing, Cath.

One of the most amazing things about watching your child grow up is seeing them take on their own responsibilities and realising that, even without you, they will thrive.  It’s no different when your child has type 1 diabetes.

For the past ten years, it’s been my job to look after my daughter; to keep her safe; to keep her alive. I’ve been the one testing, injecting, doing site changes, making adjustments and going to appointments.  I’ve been the one checking the carb count in every piece of food that she eats.  I’ve been the one nagging.  I’ve been her carer – and it’s been the most important job that I have ever done.  Sometimes, it’s extremely difficult to let go of that.  It becomes our identifier.  It’s who we are.

Cath

Cath and her daughter

But, I’m here to tell you that ‘letting go’ is so worth it, so rewarding and, ultimately, the best possible thing that you can do for your child.

Now, I’m not talking about handing everything over to them and walking away.  That would be a disaster.  What I’m talking about is slowly letting go of the control that we have, allowing them to make their own decisions and their own mistakes.  Allowing them to learn how to look after themselves safely for the rest of their lives.

Let’s face it; as much as we joke about them having to build a granny flat for us when they move out, the reality is that they are likely to be living on their own at some stage.  Possibly living with friends or a partner.  And certainly – not with us.  We want them to be confident and competent in their own care.  We want them to know what to do in any given situation.  And we want them to live happy lives.

Twelve months ago, we began consciously working on this transition time with our daughter.  She was 14 years old and had just been selected to tour the United Kingdom and France with her school netball team.  Even though she would have teachers with her for the tour, we wanted her to be confident enough to look after herself while she was away.  I made sure that she knew that I was there for her if she needed me and, nervously, handed over the responsibility for testing, carb counting and bolusing her insulin.  I did not ask.  I did not nag.  I cut back on the night time testing.

I admit to you all that, as we approached her quarterly visit to Diabetes Clinic, I feared that we would see the worst HbA1c ever.   It was a tough lesson – but also one of the proudest moments of my life – when she presented her best result EVER.  She had taken control.  She had stepped up.  She had set her own alarms to test during the night or she had asked me to check on her.  She had worn her Dexcom CGM and taken great interest in the effect of different foods and activity on her blood glucose levels.  Essentially, she was doing this on her own.

Stonehenge

Cath’s daughter at Stonehenge

When September rolled around and we waved her and her school mates goodbye, we knew that she was going to be just fine.  And, more importantly, SHE knew that she was going to be just fine.  For almost three weeks, I did not know her levels – not one of them.  I didn’t know what she ate or what activity she was dealing with.  And, when we spoke via Skype, diabetes was not mentioned once.  She told me about her adventures and the people that she had met.  It was magical.  A huge turning point.

Now, she is still driving her own diabetes management.  Several weeks ago, she told me that she wanted a pump holiday.  She asked me for guidance and I showed her what needed to be done.  In the past, her “holidays” have barely lasted a week.  Now, with her in the driver’s seat, she is entering week four on multiple daily injections and she is doing great.  I don’t know what all her levels have been but she is happy with them and that’s all that matters.  I see her testing.  I see her injecting.  I know that she is going to be just fine.

I know some remarkable and inspirational young people who just happen to live with diabetes – and I know that my daughter will be in good company in this community.  She too will be an amazing young person – taking life by the horns and doing whatever she chooses.  Diabetes is just a tiny part of the incredible woman that she is.

Catherine Forbes is a mother, advocate, volunteer and peer support mentor. You can follow her on Twitter here.

‘I’ve been compliant,’ I said to my ophthalmologist with great pride. ‘Compliant’, I said again and smiled at him and waited for a pat on the back. It didn’t come. So I tried again, emphasising my point. ‘Four times a day; both drops in my eye.  Just like you said. Didn’t miss a single drop. I was com-pli-ant.’

If there is a word that is evokes rage in me it is compliant. When used in terms of diabetes management, it makes me see red and start imagining the painful things I’ll do to the person using the word. Actually, it’s usually used with the prefix ‘non’ to give the word noncompliant which is even worse.

At the World Diabetes Congress last year, Twitter nearly broke thanks to a group of DOC renegades sitting in a lecture given by a doctor who insisted on using the term ‘noncompliant diabetics’ to illustrate the point that some of his patients were having difficulties following their diabetes treatment plans. There we were, non-compliant diabetics because we couldn’t keep our BGLs perfect and follow the rules and do the things we ‘should’ do and, you know, do it all with a smile. Bad, bad, BAD diabetics. This photo shows how happy I was:

pissed off

So with this hatred of the word, why was I bandying it about in front of my ophthalmologist like there was no tomorrow? And saying it so proudly? And frequently?

The answer is quite simple. Following the treatment plan I’d been given after my cataract surgeries was easy. Two different eye drops; four times a day; for 4 weeks. Then it was over. It was something that, for me, was manageable. There was a point where it would stop and then I wouldn’t have to think about it again.

The complete opposite of living with diabetes where there is no end point and no time where a box can be ticked and it will all go away. It was so lovely to be able to do something that was predictable, easy, knowing that there would be a time when it didn’t have to happen again.

Understanding the relentlessness of diabetes management is difficult to communicate. I don’t really expect people to truly appreciate what it is that is so frustrating and annoying and challenging. But I do expect a little respect and a little acceptance when things are not going to plan. I also think that using judgemental words that suggest that there is a deliberate attempt to ‘break the rules’ is unfair and lacks any sort of comprehension about a condition that never goes away.

Perhaps my delight in announcing so loudly and proudly to my ophthalmologist about how clever and bright and shiny I’d been with my eye drops was because for once I felt like I was actually doing something right when it comes to my healthcare. Perhaps I needed recognition (probably more from myself than anyone else) that I could follow directions and get the desired results. Perhaps I just needed to believe that I was doing something that would result in predictability and a satisfactory outcome. Diabetes doesn’t ever provide any of those things. No matter how compliant you are.

Trying to cut the chatter in our busy lives is near impossible. There are so few times that we are ‘off’ and for me there is a constant white noise keeping me company. There are very few moments in my day when I am not in some way having a conversation of some sort with someone – or multiple people. In a five minute period I could be speaking in person with someone (or some people) while answering phone calls, listening to voicemail messages, sending SMS messages, Skyping someone, sending photos via MMS, answering and sending Facebook messages.

And at the same time, it’s possible that I’m taking a photo of my coffee, updating my Facebook status (This coffee is awesome!) and sending a tweet or two (Great coffee from new café in Melbourne’s inner-North) all while adding the picture to Instagram.

There is no silence in there. No gaps.

This last week, I’ve taken a step away from some of the noise in an effort to try to find some calm. With my eyes still not one hundred per cent, simply grabbing my phone, swiping to awaken it and checking Facebook, Twitter, email, SMS messages etc. is not so simple anymore. Glasses need to be located and put on and then I can start. It’s not as instant anymore. And because of that, the habit is slowly, but surely changing.

It took the better part of the week to deprogram myself.

I’ve realised that this is something that needs to be done consciously. Yesterday, at lunch at an outdoor café with a large group of friends, I looked over to where our kids were sitting on the ground in the shade. There were about 12 of them, all gorgeous, fit, sun-kissed kids who are more than capable of holding a conversation. And they were sitting in a row, not conversing, not playing, not teasing and joking with each other. No. They were all looking at their own iDevice. Totally enthralled and engaged. Just not with each other.

As someone who is permanently attached to my iPhone (seriously, if I had to make the choice between life-saving-insulin-delivery device and I-can-connect-to-the-whole-wild-world-all-the-time device, it would be a difficult decision) I am certainly not saying that technology is the end of civilisation. I’m not demonising our connectedness and if the truth be told, being able to reach out and ‘see’ someone from the DOC at any time is incredibly reassuring to me.

But is it the end of the world if I don’t know that the New Yorker Facebook page has just updated its status with a new cartoon? (Probably not, but this one is hysterical!) And really, even though it can be incredibly frustrating if I can’t remember the name of an actor in an episode of Breaking Bad, it will not kill me if I don’t IMDB the answer straight away!

So – I’m trying something new (as promised earlier). I am going to try to detox the constant chatter from my life. It’s not about going cold turkey, deactivating my Facebook page and leaving the Twitter community. It’s about boundaries. It’s about giving attention to the people I am with at any given time. But more than that. It’s about giving myself time. And space. And silence. Because sometimes, the answers are found there.

Just after I wrote this piece, I read this Huffington Post blog. I totally get it!

Yesterday as I skimmed a few news sites and social media sites, I came across endless diets, weight loss fads and a downright disturbing article about ‘bikini bridges’ which, it appears, is the latest in ‘thinspiration’ trends (we’ve moved on from the thigh gap, apparently).  I caught up on a piece about ‘diabulemia’ and thought about how diabetes adds an extra degree of difficulty to all things – even eating disorders.

The relationship between weight, food and diabetes is so complex and confusing. We’re told to maintain our weight to remain healthy (or prevent developing type 2 diabetes in the first place); we’re told to manage our cholesterol for heart health; we’re told that certain foods are taboo; we’re told we need to eat at certain times to prevent lows; we’re told we should eat a lot of carbs/not too many carbs (depending on who you listen to today); we’re told to cut sugar (tweet below gives you some indication to how I feel about that one!) and we’re told that our waist circumference is yet another number to think about.

photo

Quitting sugar (or anything else for that matter) will not cure type 1 diabetes.

Now take diabetes away and we’re told a heap of other things.

There are polls about who has the ‘hottest’ body as if it is something that can be measured, and there are ‘half their size’ magazines at the supermarket. Ads for The Biggest Loser are already on our screens. Faux-concern is directed towards celebs who seem to have lost too much weight. Between fat-shaming and skinny-shaming, it appears no one is safe.

We refer to women’s bodies as ‘hot’ as if they are pieces of meat to be graded. There is no consideration for whether they also happen to be intelligent, have a strong social conscience or are good at horticulture. Or knitting or whatever it is that they are good at. Because it doesn’t matter. As long as they look hot.

Women become known as specific body parts (except Elle Macpherson who is known as ‘The Body’ which means that no one cares what’s going on in her brain). Pippa Middleton isn’t known for being Pippa Middleton. She’s known because her arse looked ‘hot’ in a white dress.

Apparently having a certain body shape makes a woman ‘authentic’. Curves, allegedly make a woman ‘real’, whereas being skinny somehow, miraculously, makes her less real.  Believe me, as someone who has at times had some decent curves to hold on to and then at other times can see bones protruding, I’ve always been real.

I don’t think much about my weight. It’s never been an issue for me and I’ve never been on a diet. During periods where I’ve tried to eat better, the focus has been health, not weight loss. Also, I love Nutella too much to even contemplate cutting processed foods out of my life. Also, bacon. And cupcakes.

And yet.

Daily, I find myself struggling with how I feel about the dozens and dozens of images that I see. I’m confused at how I should feel about my own body. Today, I look in the mirror and see that I am probably the thinnest I’ve been in some time, meaning I’m closer to the ‘body ideal’ that the fad diets promise. And yet, I look at my collarbones – all sharp angles – and feel slightly ill.

Where in there is the message that to be happy with ourselves we need to – well, be happy with ourselves? Where are the messages of celebrating who we are for more than how we look in a pair of skinny jeans? In fact, can we stop referring to jeans as skinny, please?

The discussion needs to shift. We need to stop talking about weight loss and ways to look ‘hot’. No one can achieve the things being promised. In fact we’re all destined to fail. But health? Health is something we can all work towards achieving. And if each step is measured by our wellbeing – not the size of our thighs – we’re working towards something worthwhile and meaningful. Feeling better inside. And my guess is that will have far longer-reaching consequences than detoxing for a few days.

I have a significant birthday coming up. I’m turning 40 tomorrow which, when I mention it, is generally met by people either speaking in hushed tones (‘Are you okay about it?’) or high-fiving and hugging me (‘You go girl!’).

I am okay with it and in all honesty, hitting the big four-oh hasn’t been something that has freaked me out or filled me with dread. I think about how I was when I was 20 or 25 or even 30 and I know that I’m proud of the person I am now. I’m comfortable in my skin.

I also have my 15 year wedding anniversary coming up. In times when we’re told that the marriages last an average 8.7 years, it feels good to cross off this milestone.

As much as birthdays and wedding anniversaries should be celebrated (I’m a big believer in cake, cards and carats) I’m actually finding that it’s actually my diabetes anniversaries that are becoming more and more meaningful.

This year, I ticked the fifteen years with diabetes box. I look in awe at friends who have had diabetes for many more years and at Kellion medallists who have lived lifetimes with the condition. But reaching fifteen years and doing a quick check of how this condition has affected my life leaves me with mixed emotions.

There is satisfaction that my annual complications screening checks come back with favourable results. Even the six-monthly visits to the ophthalmologist have become bearable – or at least, less traumatic – because the reports from my lovely doctor have been positive. Cataracts notwithstanding, there doesn’t seem to be any significant diabetes-related damage at the back of my eyes.

The way that my hypos have changed over recent years doesn’t leave me feeling quite so confident and self-assured. I am concerned about the times I’ve needed assistance, and with the white out hypos where I have lost significant chunks of time.

And then there are the things that lurk in the back of my mind, pushed away and only allowed to come out in the middle of the night when I can’t sleep, or in moments of surprise when I’ve forgotten to keep them hidden. Things like worrying about reduced life-expectancy or becoming reliant on my family for my care. And fear that despite common sense and what I’ve been told that it really is because of diabetes that I have miscarried three times.

But mostly, there is fist pumping when I think of how diabetes hasn’t stopped me from doing things; nor has it decided how I will live my life.

So I’m planning on big celebrations for turning 40 – it should be celebrated and not with any of this ’40 is the new 30’ crap. But with acknowledgement and some pride of who I am, what I have achieved and the wonderful people I have around me who fill my life with love and happiness. I’ll celebrate the places I’ve been and look to the places I’m going. And I will also acknowledge that in over 15 of the 40 I’m celebrating, I’ve done it all despite diabetes.

 

marios birthday

Starting birthday celebrations a couple of days earlier thanks to the waiters at our favourite cafe who surprised us with a sparkling tiramisu!

World Diabetes Day is drawing to a close across the world. The clock is about to turn over into 15 November but it seems that blue lights will burn brightly for some time to come.

GPO blue

Melbourne’s iconic GPO gets its blue on for WDD13

My WDD started on its eve with an important event for diabetes research. The 2014 Diabetes Australia Research Trust awards presentation gave 22 Victorian researches grants. Many people aren’t aware of the commitment Diabetes Australia makes to research each and every year. This year alone over $3million dollars was given, including the $150,000 Type 1 Millennium Award which is specifically for research into type 1 diabetes.

After the awards, I found myself in the Melbourne drizzle wandering down to the GPO. As I approached, I saw it lit in blue. It looked splendid! Staff from Diabetes Australia – Vic and some of the Diabetes Australia Young Leaders donned blue ponchos and held all manner of lit-up blue things (I got a wand!! I’m just like Hermione!!) and stood in the glow of the GPO. This is part of the IDF’s global light up a monument campaign. You can read here for other iconic buildings and monuments that have been washed with blue. It was some fun for an important awareness-raising activity. And now, I have a blue wand!

On WDD proper, I found myself up just after 4am and on a 6am flight to Sydney to answer some questions about diabetes on a new breakfast television show. Studio 10 ended its morning with a discussion about World Diabetes Day and I was asked about life with type 1 diabetes. It was an opportunity to bust some myths which I’m up for pretty much any time! You can see the interview here.

What I wish I knew

What I wish I knew…..

Next up was the launch of a new book called What I wish I knew about type 2 diabetes which is a collection of stories of people living with diabetes (all types – not just type 2 despite its title) and health professionals working with PWD. This gorgeous little book by Marty Wilson tells wonderful tales of people who have lived with diabetes for many years. It also includes one of my previous blogs. Look out for the book – it’s definitely worth a read.

World Diabetes Day is an important day for the diabetes community. It is our day to talk about diabetes and have others thinking and talking about it too. Whether it be international organisations like the IDF who yesterday released new global diabetes statistics in their Diabetes Atlas, or local and national diabetes organisations like Diabetes Tasmania who attended Government House for an event with some of their Young Leaders, or community events and activities like the global 24-hour diabetes Twitter chat, it’s a day where diabetes is front and centre. My Facebook and Twitter streams were full of blue and family and friends commented on my posts and even posted on their own pages about diabetes. (A shout-out to my sister who got TOTALLY in the WDD-spirit by wearing blue circle earrings and plastering her Facebook wall with WDD messages. Thanks, Toots!) I even pinned blue circles onto our real estate agents’ very suave suits as they came to do an open for inspection for our house sale last night. Everywhere I looked I saw blue.

Diabetes may not be understood by everyone. But yesterday was a day where we could talk about it and hopefully give people a little more understanding about what life with diabetes means.

Of course, it doesn’t end here. The WDC is in just two weeks. Let’s keep the conversation going. And don’t forget the OzDOC get together on 3 December as part of WDC!

I am very fortunate that my job allows me to do a bit of interstate and international travel. Working for a not-for-profit means that while there are some opportunities for attendance at conferences, finding sponsorship is necessary if I want to attend all the conferences and meetings that are worthwhile and beneficial to my job.

Last month, Johnson and Johnson kindly sponsored my travel to Barcelona for the EASD conference, specifically to attend its second annual European Bloggers Summit.  As the only person from Diabetes Australia lucky enough to be given an opportunity to attend the conference, I knew that I would be waving the Australian flag enthusiastically as I spoke about our experiences with diabetes social media and blogging. I searched out all the relevant, social media-focussed sessions and made sure I could get to them.

The day after arriving, I attended an IDF symposium about how social media can improve the lives of people with diabetes. The symposium was on the Sunday before the Tuesday start of the EASD meeting, so unfortunately, it wasn’t as well attended as I fell it should have been.

Given my recent presentation at the ADS/ADEA conference, I was very interested to hear this session – especially the presentation by Claire Pesterfield because as well as being a PWD, she’s also a diabetes nurse. Claire made some really interesting and valid points about how difficult it is for HCPs to jump on the social-media-as-support bandwagon when in most hospitals sites such as Facebook and Twitter are blocked by the hospitals’ IT people. It’s not really all that easy to tell people about great online support networks if the ‘red screen of death’ pops up every time you try to log on to one of them. I’ve been told that this situation is mimicked here in Australia.

We also heard Paul Buchanan (moderator the GBDOC tweet chats) speak about his recent (ridiculous, crazy, lunatic) arrival in Barcelona. From Brussels. On a bicycle. Paul and his group Team Blood Glucose were part of the Mobile Health Grand Tour – made up of a group of people who forgot that there are planes, trains and automobiles available to assist in the 2,400km journey from Brussels to Barcelona. Paul spoke about how social media and new diabetes technologies were employed on the ride. Interesting stuff!

J&J DOCThe Euro Bloggers Summit ran on the Tuesday and Wednesday. It was a couple of days of workshops and presentations which covered how we could improve the numbers of people reading our blogs and ensure that we have the right ‘look and feel’ to them so that they were attractive to readers.

While the formal presentations were interesting and provided me with a lot to the think about, the thing that was the most valuable was the time spent speaking and networking with the other bloggers. There was a common theme in the room. While we like to think that there are people reading our blogs, it’s not really about the numbers. The real reason we all do what we do is because we are trying to connect with others who are going through the same things. We’re hoping that someone will read what we write and say ‘I thought I was the only one. But I’m not. I don’t feel so alone anymore’. We are telling our stories and sharing our fears and hopes while we look out for people who can share their stories with us.

Social media has the ability to remove all the things that get in the way of us feeling connected. We don’t worry about geography and thanks to translating software, language barriers can be broken down. Even pesky time-zones differences seem easily surmountable.

Being in the room with people who are doing the same things as me is an incredible privilege. Getting to hear about their work and their lives is an honour and I am grateful for every opportunity I get to learn from them. We need to start creating more opportunities like this in Australia. The World Diabetes Conference is the perfect chance for that to happen. Please take advantage of the fact that this significant diabetes meeting is being held in Melbourne and that there is discounted registration available to consumers. I’ll be there and I really hope to see some of you too!

Disclaimer

Johnson & Johnson covered my travel and accommodation costs so I could attend the Animas European Bloggers Summit. They were also kind enough to cover registration costs to the EASD meeting. There was no expectation that I would write about the Summit (or them). As part of this arrangement, I will be presenting for them at their booth at the World Diabetes Congress in Melbourne in December. You should come along and heckle me!

Myths to do with diabetes frustrate me as much as the next person. I want people to get it right when they are talking about diabetes; I want the media to report diabetes correctly and I want facts presented in a clear, non-threatening, easy-to-understand way. Of course, this is relevant to all types of diabetes.

What annoys me is people who are furious about one myth, but more than happy to perpetuate others.

Some people in the type 1 diabetes community are outraged if they are lumped in with people with type 2 diabetes. Campaigns and petitions have been developed to change the name of type 1 diabetes to avoid confusion between the two conditions. The thought of being thrown in with people who ‘brought this on themselves’ (that, by the way, would be another myth and completely unhelpful) results in Facebook posts, Tweets and blog after blog after blog.

Me – I couldn’t really care less. I have type 1 diabetes, I know it and I’m happy to educate anyone who has no idea about autoimmune diabetes. I’m also too tired and just plain over this discussion, so I try to avoid it. I do acknowledge that if it wasn’t for the significant number of people with type 2 diabetes, I’m pretty sure that the 120,000 of us with type 1 in Australia would get lost when it comes to funding and media attention.

But, for some it is a real issue and they get angry and do anything they can to make sure that they are seen as different from the majority of people with diabetes in Australia – the type 2 diabetes community. And that’s fine. If that’s what your thing to get angry about is, knock yourself out. (My thing changes every day. Today it was that I didn’t get a cup of coffee in me until after 11.30am.)

There are many other myths about diabetes and they annoy me more. Here are just a selection that I’ve come across in the last couple of days:

  • If you use an insulin pump you have diabetes ‘really bad’ (wrong and rotten grammar!)
  • If you have diabetes, you can’t eat sugar
  • If you weren’t so lazy you wouldn’t have type 2 diabetes (genes anyone)
  • Diabetes isn’t really serious
  • Cinnamon cures diabetes (okay – it was me banging on about that, but I was just trying to justify in my own head eating an apple cinnamon muffin.)
  • You can catch diabetes.
  • You grow out of type 1 diabetes (blood. starts. boiling.)

I immensely admire and respect the work done by the Juvenile Diabetes Research Foundation, but using the term ‘juvenile diabetes’ just fuels the myth that this is a condition that only affects kids. Focusing on children who have diabetes is incredibly important, but those kids are going to grow up and hopefully live long, healthy, happy lives. Where is the awareness and focus on adults with diabetes? The reason the term juvenile diabetes isn’t used anymore is because it doesn’t accurately represent the broader type 1 diabetes population.

Of course I’m being somewhat self-serving. I was diagnosed as an adult and my experience of life with diabetes is through the eyes of someone who has lived with it since my mid-twenties. But during that time, I’ve needed information and services and programs that just weren’t there. Information about pregnancy, body image, parenthood, work life balance – things that are relevant to me at this stage of my life – was quite thin on the ground!

I completely agree and believe that there needs to be programs and activities developed specifically for kids with diabetes. Diabetes in day care and school settings is a critical issue to be addressed; camps for kids with diabetes are brilliant. But this is an ages and stages condition. Why is there not as much of a focus on other periods? Whilst some attention is being given to transition from adolescent to adult health care, what about for men and women with diabetes in their thirties and forties? Where is consideration of women going through menopause or for people at retirement age? Why is no organisation focusing on older adults with diabetes in aged care?

If people want to make sure that the world understands that type 1 diabetes is different to type 2 diabetes, then surely they also want to break down other myths about type 1 diabetes. This is not a condition that only affects children. Half of those diagnosed with type 1 are diagnosed as adults. The majority of people in Australia living with type 1 diabetes are adults.

Break down the myths. Educate people about what type 1 is all about. Just don’t do it at the expense of all the facts.

Is there a myth about diabetes that annoys you?

Each and every day I make dozens of diabetes decisions. I decide how many carbs I will eat and how much insulin I need to inject to cover those carbs; I decide how much glucose I need to treat a low BGL; I decide if it’s the day to change my pump line (or try to get an extra day out of it); I decide whether or not to eat something before taking a walk. All of these decisions impact on my BGL and my diabetes management.

And I prick my finger up to 10 times a day and based on the number displayed on my little machine I often decide how much of a potentially lethal drug I will inject into me.

That is the reality of life with diabetes. I say it not to be dramatic. It’s just part of what I do.

And I say it because if you ever think that the numbers displayed on that little machine are not important, think again. Close enough is not good enough.

In talks I give, I often say that how our diabetes paraphernalia looks is important and anyone who thinks that we are being shallow or vacuous because we want a pink pump or a pretty meter case doesn’t understand the monotony of life with diabetes.  The fact that my meter case is pink and red and has poppies all over it and is from a Finnish design company makes me less pissed off every time I have to reach for it to stab my finger and check my BGL.

BUT! The most important thing of all is that I can trust what the meter and strips housed in that bright case tells me. Because I make regular decisions based on the number on the screen. I treat low BGLs if the number is below 3.5mmol/l; I decide if I’m happy to go to bed and sleep without any carbs if the number is at or around my bedtime target; I decide if I need to eat some carbs before I exercise; I decide if I’m happy to get behind the wheel of my car and start to drive. I decide if I am going to give myself a correction dose of insulin. All of these things have the potential to go wrong if that number isn’t accurate.

I may want my new meters to come with a gorgeous case or to have a light where the strip goes in for ease of use for night-time testing. I like the idea of meters that tell me of daily BGL patterns or those that use cartridges of strips to help avoid the inevitable strip detritus that decorates every room I’ve been in. I like that it takes only 5 seconds to give me a result and that less and less blood is needed on the strips. All of these things are great, but pointless – completely pointless – if I can’t trust the result. Accuracy. THAT’S what’s important. Most important.

Have a look at what’s going on in the USA with the fabulously named Strip Safely campaign.

kellion bookletToday, things got a bit fancy with a visit to Government House for the annual Kellion Victory Medal Award Ceremony. The Kellion Medal celebrates people who have lived with diabetes for 50 plus years with awards given at 50 years, 60 years, 70 years and even 75 years. This year in Victoria, twenty-one people received 50 year medals and an additional fourteen were given their 60 year award.

I have written before that this is my favourite day of my work year and it really is! I am so honoured and privileged to be able to sit in a room with this remarkable group of people and hear their stories of long, full lives despite diabetes.

When it comes to diabetes, I am a mere teenager. With only 15 years under the hood, my Kellion medal is a long way off. But I love this day so much because I leave feeling positive and hopeful and encouraged.

If you’re looking for inspiration, this is the place to come.  Interspersed with tales of boiling glass syringes and sharpening needles are the attitudes and the approaches that have seen these people not only live, but live well with diabetes.

Here are just some of the things I heard today.

Marjorie (50 year recipient) has given herself over 50,000 injections in her lifetime.

Judy (50 year recipient) says ‘I don’t feel sorry for myself, but it makes me happier if I can say sometimes that it’s crap to have diabetes’.

Kevin (60 year recipient) says he’s ‘led a good normal life’ but is frustrated there is not yet a cure.

Plus some great tips such as the one from Guy who received his 60 year medal today. ‘Never give up your sense of humour!’

Garth (60 year recipient) believes that ‘Common sense and a positive attitude are invaluable tools. The best way to treat diabetes is to lead a normal life.’

And the fabulous Peg, who is a DA-Vic Board Member and has run a support group for people with diabetes for many years says, ‘Join a local support group so you can meet others with diabetes, to exchange ideas and experiences. Never let diabetes stop you from experiencing life!’

I also learnt that even though there has been amazing progress when it comes to diabetes management tools and technology, some things never change. At diagnosis 60 years ago, Kevin was told there would be a cure in 5 years’ time. That old chestnut seems to have been around for a long, long, long time!

A bit fancy? Maybe. But if anyone deserves a special morning tea and a bit of ceremony it is people who have lived with diabetes for so long. It is people like this who we should be celebrating and throwing ticker tape parades for (and I say this not only because in 35 years I’m expecting ticker tape!). We should be looking to these people and acknowledging that surviving diabetes for such a long period does deserve awards, tributes and accolades. I want to be just like them when I grow up!

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