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diabetes tales

 

MIMI

I’m Mimi.
Daughter. Sister. Granddaughter. Friend.
Wannabe vet & farmer.
Frustrated horse rider.
Reluctant pianist.
Enthusiastic singer.
Elegant ballerina.
Thrill seeker.
Animal lover.
Trainee pancreas.
Which is the last thing you need to know about me. Because I’m not just a T1D diagnosis.
I’m a 10yo girl.

Mimi

 

Diabetes Tales is a new thing I’m trying out at Diabetogenic. If you’re interested in taking part, let me know!

 

It’s Friday evening and the end of a busy week.

But before arriving home for an early night of not-very-much, I detoured to one of my favourite cafés, Marios, for a DOC meet-up.

Coming together, a few regular OzDOC-ers, a GBDOC-er we’re now calling one of our own and a delightful representative from the South African DOC.

Thanks, Twitter, for bringing us all together!

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diabetes tales

 

ASHLEY

I felt my life shatter when I was told I had diabetes. I didn’t know much about it then, and felt so alone, scared and broken. It took me a long time to accept it and find beauty in cracked glass from the Diabetes Online Community.

Ash

You can read more from Ashley at her blog, Bittersweet Diagnosis.

Diabetes Tales is a new thing I’m trying out at Diabetogenic. If you’re interested in taking part, let me know!

There is a wonderful website I love called ‘Humans of New York’. It showcases the work of Brandan, a NYC-based photographer who tells the stories of people on the streets of New York and accompanies their words with gorgeous photos. I love it for a number of reasons. The stories are all beautiful and run the gamut from gloriously joyful to tragic and tear-inducing. Also – New York: what’s not to adore! There are ‘Humans of….’ blogs and projects from other cities too now – Melbourne has our own.

There’s an intimacy and openness to Brandon’s subjects as they share what’s on their mind at the moment he takes the photo, or tales of things that have happened in their lives.

I’ve always loved hearing people’s stories. I ask a lot of questions of people in an endeavour to get to know something that isn’t at the surface. Finding out what explains people – what makes them tick, get excited, saddens them – is a privilege and a joy.

Reading blogs gives the same insight and it also connects me to the writers. Diabetes blogs by others help me understand my own diabetes story better. And I blog in the hope that my stories do the same for others.

So – I’m starting something new.  Every now and then, I am going to ask one of my friends with diabetes to send me a photo and a sentence or two about their diabetes week or something about their life with diabetes. I haven’t got a catchy name for this yet, but suggestions are greatly appreciated.

If you’d like to participate, get in touch using the contact me button at the top of my blog.

So – for today, I’m asking Eliza to kick it off this new project.

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Where was your last overseas holiday?

My last trip was to Japan. It was unbelievable. Having diabetes didn’t stop me tasting every food I could find or having a go at every slope on the mountain. The most tiring part was digging my skis up out of hip-deep powder every time I fell over.

Japan 2

I couldn’t be more excited to receive this in the mail today:

Kerri book

 

And I couldn’t be more proud of the wonderful Kerri Sparling who I am lucky enough to call my friend.

Renza & Kerri Brunetti

Run, don’t walk, to order your copy of Balancing Diabetes now!

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.

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!

One of the reasons social media is so powerful is because of the way it connects people. By removing all the constraints that would normally prevent people from sharing, we form connections based on shared experiences and familiar stories.  We know that in the Twitterverse, there are no boundaries or territory lines to divide us. Last year, this blog was read by people from over 90 countries around the world. (Seriously, I couldn’t name 90 countries, so I’m going to have to take the word of the clever WordPress fairies on this one.)

There are so many examples of times when I read something and feel a pang of familiarity because the story mimics my own experience.  And I’m always touched when people tell me that my posts ring true to them. There can be real solidarity when you are part of an online community. In today’s diabetes online community, I am fortunate to say that I feel I was welcomed from when I first hesitantly put up my hand and waved hello. The reluctance came because in a previous attempt to participate in an online diabetes site, I was condemned for having an opposing opinion to the moderators. I meekly retreated, insulin pump dragging behind me, and never went back for another play.

It saddens me when I see stories of internet trolls who deliberately upset people and consider it fair game and sport to have a go at those with differing opinions. The cowardice and manipulation shown be some who use anonymity as a screen to hurt people can be terrible.

There are billions of stories in the world and when we find people we connect with, we reach out and want to hold on. I know that’s how I feel about the DOC – I hear familiar stories and want to grab onto them and the people who wrote them (metaphorically, not literally; that would be creepy) because they help make sense of my diabetes life.

We’re not all the same and that is so okay. Perhaps the reason that online communities like to DOC work is because rather than looking for differences and calling each other out on them, we look for the similarities instead. We search for the things that connect us and build our community on that. And that makes me want to keep coming back for more. And more.

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They’re both red.
Focusing on the things that connect us.

 

 

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