You are currently browsing the category archive for the ‘Social media’ category.

D blog week 2015 banner

It’s Diabetes Blog Week! Thanks to Karen from Bitter~Sweet Diabetes for coming up with and coordinating this exciting annual event. It’s a great chance to discover other diabetes bloggers from around the world. Here’s my third entry for the week!

Last week, as I skimmed through the topics for this year’s #DBlogWeek and saw Wednesday’s prompt, I gasped. It was an involuntary, sharp, sudden intake of breath and, somehow, it felt painful. I knew what I would write about. I knew I needed to write about this. It’s not only about diabetes, but then, it is, because everything when it comes to my health and my body is intrinsically linked to diabetes.

You see, it is time to let go. It is time to somehow acknowledge that I need to say good bye. It is time to release the pain and the hurt and the ache that, although it will to a degree always remain, is suffocating me in many ways. I need to unfurl it from the tight, protected ball that is so deeply placed inside of me and liberate myself from the hold it has.

Even though it is time to say goodbye to the pain, to the loss and the grief, I don’t want to. It’s not that I am bidding goodbye to the baby that, every day, I think about, or to forget about the loss.  But it is time to farewell the dream. 

It has been time for a while now, but I have held on stubbornly, resolutely, fiercely because I feel so sad and like I failed this little person before they could come into the world. By not letting go, I’ve somehow kept them alive and safe – at least in my heart and my mind. By feeling the pain, I have found a connection that was lost. 

And I’ve wanted to hold on to the dream of what could have been, and to spend daydream-y chunks of time each day imagining and wondering of little faces with long eyelashes and tiny heads of hair and miniature fingers wrapped around mine and the deep, even breathing of a sleeping baby. Because the baby was mine – was made from me, of me – and I didn’t get to actually see his face, brush the hair from her eyes, feel his fingers gently squeeze mine, hear and count her beautiful breaths.

I’ve held on for reasons that are confused and confusing and selfish and tied up with my very being. It makes me question everything I know of myself. Is this giving up? Is letting go giving up? Is it dishonouring the memory of my son or daughter? Have I stopped caring? Am I admitting defeat? Or acknowledging my shattered, damaged, broken body has won?

I don’t know and I will work through that over the next few months – with the some professional help.

But it is time. So. I say good bye. And it is time to start to forgive myself.

D blog week 2015 banner

It’s Diabetes Blog Week! Thanks to Karen from Bitter~Sweet Diabetes for coming up with and coordinating this exciting annual event. It’s a great chance to discover other diabetes bloggers from around the world. Here’s my second entry for the week!

I am an open book. I am an over sharer. I have no filter. I frequently blurt out things that people really don’t need to know. ‘I’m just going to have a pee’, I might exclaim, getting up from the table and rushing to the bathroom when really, a simple, ‘Excuse me for a moment,’ would have sufficed. I find ice-breaker exercises at work meetings excruciatingly difficult because I can rarely think of one thing that no one knows about me or something interesting about me that I haven’t shared.

I wish I could say that I only share stories that paint me in a positive light, where I am all elegance and class, and look like I have it all together. But apart from being a complete and utter lie (seriously, the word ‘klutz’ was invented for me), it would give a really false sense of what diabetes is about. So you get the embarrassing and hopeless and ridiculous. You get the stupid and the nonsensical and the repeated mistakes. All of it. I am sorry.

But, having said that, there are things that I do not write about on my blog, or even speak about with others. There actually are parts of living with diabetes that are difficult to write about because I don’t like how they makes me sound.

There are days that diabetes feels overwhelming. Of course I write about that. (Oh, don’t I write about that?!) But what you probably won’t see me write about – and what I rarely talk about – is that sometimes I think that I have been dealt a really lousy hand when it comes to my health.

I don’t compare conditions – you will never hear me say that I have it worse than you, or, conversely, that we should just get over ourselves because it’s only diabetes and it could be worse. (By the way, don’t ever, ever, ever say to someone with diabetes – or anything else for that matter – ‘It could be worse’. Seriously. Just don’t.)

But you know what? There are days – usually after a bout of nasty, recurring lows; or vulgar, unforgiving highs; or this freaking burnout that seems to have moved in permanently – that I do really want to say ‘Enough! It’s not my turn anymore’.

And the reason I don’t share this is because apart from making me sound pathetic, I can’t allow myself to get into the sort of funk where I just feel sorry for myself. It’s too easy to start to believe it; it’s too easy to start to think that I really do have it tough, that it really is unfair.

The truth is, it’s not unfair. It’s just life. We all have crosses to bear, health issues to manage, shitty things that happen. And I don’t want to be the person who focuses on the crap when there is, somewhere in there, some sort of silver lining – often in the shape of a jar of Nutella.

every jar of nutella

 

D blog week 2015 banner

 

It’s Diabetes Blog Week! Thanks to Karen from Bitter~Sweet Diabetes for coming up with and coordinating this exciting annual event. It’s a great chance to discover other diabetes bloggers from around the world. Here’s my first entry for the week!

I honestly believe it when I say that diabetes hasn’t stopped me from doing anything. I was diagnosed at 24 years at a really busy time where I was making plans, dreaming of my future and beginning to really think about who I wanted to be in this world.

And those plans I was making all happened. And the dreams came true. And I found my place in the world.

There are, however, some things of which I am particularly proud. The red velvet cake I made for Mother’s Day afternoon tea yesterday should probably get a mention. My book and boot collection make me proud as punch! I can recite pretty much the whole of Marx Bros’ A Night at the Opera. I can whip pretty much anyone at air hockey. But these things were never in question. I was always going to manage to achieve them. Diabetes or not.

But diabetes did make me wonder about some of the things I wanted to achieve. The dream of becoming a mum felt, for some time, as though it were slipping away. With diabetes mixed up in other serious health issues, getting pregnant – and staying that way – was something I thought would never happen . But that dream too came true in the form of a chubby-cheeked little baby girl who I am so privileged and lucky to call my daughter.

Diabetes doesn’t factor into the planning and shaping of my dreams and hopes. I wonder if it just makes me more desperate and determined to achieve. Is it despite or because of diabetes that we make plans – some large, some small – and then go all out to reach them?

because i'm crazy enough

I get the power of self talk and I also like to be positive. My diabetes has allowed that to a degree. It has played out in a way that hasn’t stopped me. Saying ‘I can’ has always ended up in ‘I did’ because, as well as being determined, the diabetes barriers have been minimal.

But that may not always be the case. I hope that if –when? – diabetes does throw up more challenges and makes things more difficult, I never stop dreaming and planning and hoping. I hope I never stop saying ‘I can do this’ – or even more so, ‘I did this’.

ithinkican

Diabetes is really not a topic of conversation much for me when outside of work. And outside of this blog. I know – hard to believe. But when I am around friends or with my family, there may be a passing comment, but it rarely dominates discussion.

Having said that, we had our neighbours over for dinner last weekend and the ‘Pumpless in Vienna’ story got an airing – and not by me! It was interesting to hear it told from the perspective of one of the main characters in the story.

And then yesterday, while I was in Geelong, I had lunch with my team mate Kim (this is Kim!) and not once in our hour long chat did we speak about diabetes. Not once. In fact, it wasn’t until I got up to leave and mentioned to the waitress that I would love to continue to sit by the fire, but had to rush off to give a talk, and she asked me what the talk was about, did the word ‘diabetes’ come up.

‘Oh. Is it about type 1 or type 2 diabetes?’ she asked. Kim and I looked at each other with surprise – and a little delight. ‘Well, in this case both. But usually we work with people with type 1 diabetes,’ I said. ‘Our waitress over there has type 1 diabetes,’ she continued. It’s possible that Kim and I squealed at that point. ‘I’m so annoyed that I need to leave now – I’d love to chat with her. But Kim here isn’t going anywhere!’ And out I walked. I hope they had a chance to catch up!

I love a good diabetes in the wild story!

Other things occupying my small mind this week.

Cards to send when you don’t know what to say

I love these! They have been all over my social media feeds. They are such a wonderful idea. Emily McDowell has created empathy cards for people with serious health conditions.

I love the one that says ‘I’m really sorry I haven’t been in touch. I didn’t know what to say’ because often that is the case. We don’t know what to say. But if we have a friend going through a tough time, it’s not about us or our awkwardness. This card shows that even though you feel clumsy with words, you are thinking of your friend.

This is my favourite – and probably most relevant to diabetes. Please don’t tell me about you grandmother who lost her limbs because of lemons. Okay?

Life gives you lemons

Numbers mean nothing on their own

I had a very cool Twitter exchange with the super clever Dr Rick Kausman after I tweeted a link to this terrific piece he wrote for The Conversation this week. Numbers (in this article’s case weight) only ever tell part of the story – and often not the most important part!

Quick! Time’s running out for MILES 2

Diabetes MILES 2 is about to close. Do it. Do it now! (Read about it. Read about it here!)

There is a place for Dr Google in our healthcare teams.

While seeking medical advice exclusively from Dr Google isn’t the best idea, there is no denying that the internet and social media are indeed a significant source of information that really can benefit people living with health conditions. I hear blogs are a good source of information and support. Apparently. So I’ve heard.

Have a read of this great piece from MD Joyce Lee. I think she gets it right when she says this:

Healthcare, wake up. It’s not the 1990s anymore. 
Social media, google, and the internet ARE medical therapy.

Dr House was wrong 

What do you know about Lupus? Dr House seems to believe that ‘It’s never lupus’, but actually, sometimes it is. I’ve grown up with an understanding of this autoimmune condition. My gorgeous mum has been living with it kicking its arse for more than 30 years.

Here’s some information to brush up your basic lupus knowledge. And considering that May is Lupus Awareness Month, now is a good time to get some facts!

 

Sorry - couldn't help myself.

Sorry – couldn’t help myself.

Taking a diabetes break

Well kind of. There are some lucky teens taking an artificial pancreas for a spin in the real world as part of a study being run out of Yale. Read all about it!

There will be no sleep

Next week is Diabetes Blog week. It’s gonna be huge!

Happy Mother’s day, Mum!

My Mum is brilliant. She really is. And when she sent me this text message bagging the paleo diet, she hit new levels of brilliance.

mum pete evans

Happy Mother’s Day, Mum. If I can be half the mother you are, I’ll be doing well. Love you. x

It feels like a Ray Charles kind of day.

IWishPeopleKnewThatDiabetes

If you have anything to do with diabetes and glanced at Twitter this week, it’s unlikely that you could have missed the juggernaut that was #IWishPeopleKnewThatDiabetes.

Wednesday 22 April was designated the day that the Diabetes Online Community would come together and share what we wish people knew about diabetes. We kicked it off with great force here in Australia and it took off like a runaway train from there! Late on our Wednesday night, I watched the US wake up and Twitter explode with the #IWishPeopleKnewThatDiabetes hashtag. I had to force myself to turn off my devices and go to sleep because I could quite easily have stayed up all night following.

I was amazed at the diversity of the things people were sharing. I found myself laughing out loud and wiping away tears at some of the things I read, and a lot of the time, nodding in agreement.

Critics of these sorts of activities say that they are a waste of time – that we are preaching to the converted and that it is a self-indulgent pity party. I say that’s rubbish!

Firstly, even if the majority of people who read the tweets are others with diabetes, why is that a bad thing? Building our community – coming together, supporting each other, listening to others’ stories – is how and why we become stronger. I had several people reply to my tweets telling me that they felt the same way. I did the same thing several times.

And there is absolutely nothing wrong with fist pumping and patting ourselves on the back for living with diabetes. Or saying it is tough. Diabetes does suck sometimes; it is difficult to live with; it is a shit. Acknowledging that doesn’t make us weak or pathetic. It doesn’t mean that we have given up or that we think that we have it worse than anyone else in the world. It is just saying how we feel.

I didn’t read all the #IWishPeopleKnewThatDiabetes tweets (there are over six and a half thousand of them!) but I did read a lot of them. I read tweets from people I know well and those I’ve never come across. I connected with new people and retweeted and retweeted and retweeted until I thought I was going to be sent to Twitter purgatory for a while and told to settle down!

Well done to Kelly Kunik who kicked this off last week. I don’t know that Kelly has had much sleep over the last few days. She seemed to be tweeting and retweeting pretty much around the clock!  Kelly is a bit of a force of nature. I caught up with her and another DOC friend, Stacey, when I was in NY and the three of us spoke so much we forgot to eat. Seriously. We remembered to drink coffee, but somehow we didn’t remember to order lunch! Hope you’re getting some rest now, Kelly!

I couldn’t even begin to say what my favourite tweets were. Perhaps the ones that focussed on advocacy issues and dispelling myths. But every single one did resonate in some way – even if the experience was not the same as mine. I feel that I have a better insight into how diabetes affects people’s lives. I hope – and am sure – that others have walked away feeling the same way.

(To see the reach of the #IWishPeopleKnewThatDiabetes hashtag, click on this link. At the time this blog was published, it was up to almost 14,000,000 impressions.)

We added another SHAG print to our collection the other night after attending an exhibition opening at the fabulous Outré Gallery. We now have two huge artist proofs that are based on the fabulous Peter Seller’s film The Party. Dance your way into the weekend with the soundtrack here!

 

Most days, I write on this here blog about my life with diabetes. Sometimes it is light and fluffy and frivolous. Other days, I lay myself bare and write about things that affect my very core. I have written about things that have left me feeling quite vulnerable but they are part of living with diabetes – the serious side, the scary side, the sad side.

Everything you read here is honest. It is what is happening to me. It is how I see my life with diabetes. My interpretation may be completely different to someone else’s, but I write genuinely and as openly as I possibly can.

Yesterday, as confirmation of what I already knew to be true flooded social media platforms, I found myself incredibly angry.

I already knew that Belle Gibson was a fraud. I knew that her story of curing her cancer by eating well and using natural remedies was a load of rubbish. The same way that every other charlatan promising to cure you of whatever health condition you’re living with is complete and utter bullshit. Anyone who tells you that eating an organic/plant-based/paleo/carb-free/high carb/high fat/low fat/only kale diet can treat or cure you of cancer (or diabetes or anything else) is lying. That is all there is to it.

I’m not selling anything here at Diabetogenic. There are no cookbooks being flogged, no eight week program for you to sign up to, no magic ‘teatox’ I want you to buy to fix whatever is not working in your body. I’m not promising you anything other than a way to spend five minutes while you have a cup of coffee.

Yet I have benefitted from this blog. I have been asked to speak at conferences here and overseas. I have been invited to bloggers summits and to sit on expert panels as a consumer representative.  I take these things very seriously. I have been afforded opportunities because what I write is considered to be of value to others either living with diabetes or working with people with diabetes. People take what I say here and believe it to be true.

And it is. But Belle Gibson has tainted the writings of every health blogger.

This goes beyond Belle Gibson. Every other wellness expert – all of them – should be held to account right now. I am talking about Sarah Wilson, Pete Evans, Vani Hari, Ashy Bines, and anyone else making health claims that cannot be substantiated by real evidence. THESE PEOPLE ARE DANGEROUS. Frequently, mixed up in their lies about their miracle cures are more lies about vaccinations and medications. They prey on people who are vulnerable and scared and desperate.

Today, I am furious. I am horrified that some people will lump me – and the people I know and love who write incredibly honest and worthwhile blogs about their daily lives with diabetes – in the same basket as Belle Gibson. I fear I will be tarred with the same dirty, lying, fraudulent brush. I feel the need to justify my writings and the very existence of this blog.

But I am not Belle Gibson. I am not lying to you. I am not trying to sell you anything. I just want to connect with other people who are living with diabetes. I just want to be part of a community of people who I can turn to for support and help.

Go away. There is nothing to see here today.

Instead, enter #IWishPeopleKnewThatDiabetes into your search engine and spend the day reading about the things we all want everyone to know about diabetes.

This is the initiative of Kelly Kunik from Diabetesaliciousness. But don’t read her blog today either. You can do that tomorrow.

Today it’s all about this hashtag: #IWishPeopleKnewThatDiabetes

Go!

 

IWishPeopleKnewThatDiabetes

Yesterday was #dayofdiabetes, an initiative from Chris from A Consequence of Hypoglycaemia. You can read about it here!

I didn’t really get involved yesterday. I was feeling pretty blah about my diaversary and I didn’t want to live tweet just how blah I was feeling. But that doesn’t mean I didn’t follow along.

Here is what I learnt when I was scrolling through the #dayofdiabetes tweets last night as I was wide awake, hypo:

Diabetes is freaking boring! No seriously.

Like, really, REALLY boring.

Now this shouldn’t really come as a surprise to me. I live this thing. All the time. I know the drill. I know what it takes. I get it. (Or THIS, as @Diabetes Heroes most eloquently tweeted!)

The aim of the day is absolutely not to get people feeling sorry for us or thinking that we have things so, so tough. It’s a day where we try to live tweet our life with diabetes and take a moment or two to actually document each and every detail of life with diabetes.

You may think that we do that already. That between the blog posts and the Facebook pages and the Twitter chats that there is a lot of diabetes documentation already happening.

But what the #dayofdiabetes social media flood shows is just how much we DON’T say about our lives with diabetes.

We may talk about hypos (see my tweet at exactly 12.58am last night) and being burnt out; we may talk about campaigns and programs and experiences with healthcare professionals; we live tweet from conferences and participate in tweet chats. And we have our special brand of diabetes humour that we share too.

However, these things in no way give indication of the minutiae of diabetes. Those minute-by-minute things we do, the decisions we make, the mindless and almost-reflex-like way we reach for devices to push, press, inject, click – all to help us manage our condition.

If you don’t have diabetes, Google ‘#dayofdiabetes’ and have a look through some of the things people have posted. It may give you some insight into just what the daily grind is all about.

And if you do have diabetes? There’s lots there for us as well. For me, I find exercises like this so comforting.  Knowing that others feel the same frustrations about doing the same things, or that the thoughts that pass through their heads at certain points mimic mine makes me feel connected.

This is awareness-raising at its simplest and best. I wish that healthcare professionals and those responsible for developing diabetes policies could read the feed from yesterday. Perhaps this could be submitted as part of the consultation process for the development of the new Australian National Diabetes Strategy! I can’t think of a better way to provide a glimpse into a day in the life of someone with diabetes and what we need!

It is no secret that I am scathing when it comes to so-called ‘wellness experts’ sprouting health information. I’m referring to a group that, broadly, has no credentials other than a pretty face as the front person, PR savvy and a very good understanding of how to use social media.

I spend too much time looking at these sites because they frequently pop up in my social media feeds. Their reach is so significant that not a day goes by when I am not faced with some ridiculous claim or another. (No, my body is not acidic and I do not need a starter dose of lemon water in the morning to ‘alkaline my system’. Also bone broth is not a replacement for caffeine, you idiots!)

Let me be really clear about this. The one thing that these folk and I have in common is a belief in eating lots of fresh foods and minimising intake of highly processed food. I agree with that. Of course I do. I’m all about eating well and enjoying food.

But from there, we head off in completely different directions because I have something called science on my side. They have paranoia; I don’t think anyone is out to get me. They restrict food groups; I embrace moderation.

Last week, I was (unfortunately) introduced to The Food Babe. I’m not even going to begin on the name this particular ‘wellness expert’ has chosen for herself. I will however say this: Why has no one claimed The Diabetes Babe as their moniker yet?

After poking around her Facebook page and website for a while, I realised something. I had a look at a few other similar sites (well, not the Pete Evans page because I’ve been blocked!!!!) to confirm what I thought. The language they use is all so alike. It’s language consistent with propaganda.

They form an ‘army’ (#FoodBabeArmy) or a ‘tribe’ (Pete Evans), waging war on pharma, food groups (No grains! No sugar!), government, health professional bodies, scientists, healthcare professionals, health organisations. Everyone, but everyone, it seems, is out to get us. Vaccinations cause autism, drug companies are hiding cures to cancer, government is in the pocket of Big Pharma and it’s all being controlled by a little alien in a spaceship flying somewhere over Jupiter. (Or something.)

Only a couple of weeks ago, we sadly learnt of the death of Jess Ainscough who was known online as the Wellness Warrior – again, ‘battling’ against traditional cancer treatments and instead engaging Gerson Therapy to treat her cancer – a treatment option that has no scientific base to suggest it works.

The language used turns these self-styled soldiers and their rhetoric into a movement – a cause. They tell people that they are ‘fighting’ this together, when there is nothing to fight against. And they use words that make people wary which is a breeding ground suspicion.

The language is hard to cut through because it is all tied up in promising health, happiness, a better life. And who doesn’t want that?

But when you do cut through, when you start to question, when you look for real proof and evidence and anything credible to back up the flowery, pretty words, you get nothing.

They are creating the ‘Ponds Institute’ of health. They are trying to make us believe that what they are selling – and make no mistake, they ARE selling! – is the Promised Land of Health and Happiness!

And the scary thing? The scary thing is that they are unbelievably – and frighteningly –  good at it.

Once up on a time (July 2014), in a land far, far away (Vienna), there was a beautiful young woman. We will call her Jo (because that is her name). Jo was visiting Vienna to present at a conference because as well as being beautiful, she is smart and well-respected in her chosen field.

In addition to being beautiful and brainy, Jo also has diabetes (which only increases her beauty and braininess). Her insulin pump is her trusty friend, and together they had made the long trek to Vienna. (On a plane, they didn’t really walk there. Let’s not romanticise this story too much!)

But on their first day in Vienna, her pump went ‘kaputt’, which is German for ‘You’re on your own, I’m not working anymore.’

Jo was, understandably, distressed. A faulty pump would mean reduced intake of crisp apple strudel and schnitzel with noodles. Immediately, Jo got on the phone and called the pump company to let them know what was going on and organise to get a working pump to her.

Of course, it was the middle of the night in Australia, so there was no one at the pump company and she was put through to their international call centre. She was assured that someone would be in touch with her as soon as the Australian office opened the following day.

In the meantime, Jo wondered what else she could do. Who could she call that just might be able to help in the middle of the night? So she pulled out her phone, and in 140 characters or less put out this call for help.

PumplessinVienna2

And just like a fairy godmother waving her wand, the DOC came to the rescue!

The next day some DOC people sent tweets, Facebook messages, emails and possibly, but probably not, carrier pigeons to put out the call. Who could help? Who could save this damsel in distress kickass, sassy chick and get her back on a pump?

Enter the team at MySugr who are all too clever and aesthetically blessed for their own good, (seriously – they all look like poster children for….poster children), and the wonderful Marlis, who offered to lend Jo a pump.

Jo jumped on a cream coloured pony in a taxi and took herself to the MySugr HQ, hidden away in the streets of Vienna. She climbed the stairs to meet the woman with whom she’d been connected to help her…get reconnected. Marlis handed Jo a brown paper package tied up with string her spare pump.

This is the moment where Jo and Marlis met.

Jo and Marlis.png

And at this point, Jo was no longer pumpless in Vienna.

PumplessinVienna1

She continued her trip – next stop presenting at a conference in Lisbon. Where she was not pumpless. Where she could eat all the Portuguese tarts she wanted without worry.

And she lived happily ever after.  

The end

Now, this is all lovely and the outcome was, indeed, wonderful. But what was going on behind the scenes was not. Time zones are a pain in the behind to manage at the best of times; being in a different country to the one where a pump was issued is going to add a degree of difficulty to getting a replacement pump.

However, Jo faced obstacle after obstacle after obstacle from the people she expected would help her. Because this was not a tick-the-box-cookie-cutter problem, they were unable to provide her a satisfactory solution – a working pump delivered to Vienna. Diabetes is never tick-the-box-cookie-cutter easy. It is difficult, messy, crazy, all over the place!

Jo called Euro offices of the pump company – she was not necessarily expecting the Australian office to courier a new pump to the other side of the world. But everywhere she turned, she was faced with a brick wall.

Except when she turned to the diabetes online community which is made up of wonderful people living difficult, messy, crazy, all over the place diabetes lives.

I have told this story dozens of times and have presented it at conferences both here and overseas. People stop me in conference halls to ask me about it.

And the reason that I share this story – which is not mine, – is because it shows (yet again) the value and power of our community. And it shows that social media can be used to connect people in such meaningful – life saving! – ways.

Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

Archives