Diabetogenic

On the Fourth Day of #NDW

July 16, 2014 in Advocacy, Awareness, Diabetes, DOC, Pumps, Social media | Leave a comment

On the fourth day of #NDW, I’m considering the reach of social media and the diabetes online community.

After a friend found herself stranded overseas with a malfunctioning (i.e. dead) pump, she put out a call to her online friends for help using the communication tools of the 21^st century – Twitter and Facebook. In less than 24 hours (the delay was because of bloody time zones!) and after being introduced online to many DOC folks, she has, in her hands (and attached to her body) an operating pump. Social media was the vehicle and members of the DOC from all over the world got on board to help. (Interestingly, or perhaps disappointingly, the pump company proved no help at all.)

And last night, #OzDOC celebrated its second birthday in the best way – with a party-themed tweet chat that brought people together from across the globe. It was fun and frivolous with many laughs – and ’80s song quotes. And mentions of Nutella.

Yesterday, with National Diabetes Week less than half over, I was starting to feel a little burnt out. It was getting hard to see so much diabetes everywhere (says the woman with diabetes, who writes a diabetes blog, is an active member of the DOC and works for a diabetes organisation). It was hard to stay focused on the things that help and the messages that work. It was tough seeing through the murkiness of negative messages. It was getting hard to stay on message!

But thanks to last night’s chat and knowing that my friend has a working pump again, I’m hurdling the negativity and the judgement and moving on. I’m focusing on connectedness. And so – I am sending virtual jars of Nutella to everyone at last night’s chat and to the many people who joined the dots to get my friend a pump. And just like that, I’m back on message!

On the third day of #NDW14

July 15, 2014 in Advocacy, Awareness, Diabetes | 2 comments

On the third day of #NDW14, I’m trying to avoid the doom and gloom. Which is proving rather difficult, I have to say. Tweet after tweet; article after article – it’s all bad news and promises of complications. The negativity of the reporting of diabetes can get me down.

So I’m trying to equal things up a little.

During the American Diabetes Association conference last month, I saw this photo tweeted.

Look at those stats for just one minute and maybe bookmark this page and come back to it if you are feeling overwhelmed by what you’re hearing and reading. (You can read more about this research here.)

And this morning, this one from RCH foundation.

And this from Professor Jane Speight and CERA.

I am not saying that we need to sugar coat (no pun intended) diabetes and only talk about the good things. But the doom and gloom can be a little overwhelming. Equally, I am not here to be Pollyanna and start listing all the reason that we should be celebrating that we have diabetes.

However we can, perhaps, have a little bit of balance. By all means, get the message out that diabetes is serious – it is! But how about also making sure that some of the better news – advances in research; better management options, etc. are reported too. How about we try that for a day?

Have you seen any GOOD news stories about diabetes? As the #OzDOC crowd would say, share the #dlove!

Speaking of #OzDOC – 8.30pm (AEST) tonight on Twitter it’s party time! Follow @OzDiabetesOC and join the two year anniversary celebrations.

On the second day of #NDW14

July 14, 2014 in Awareness, Diabetes | 6 comments

On the second day of National Diabetes Week, I’m having a smile, giggle, laugh out loud moment(s) and grimace. At these things:

Grimacing at Khloe Khardashian who says kukumbers kure diabetes. How kompletely kool!

Giggling at this very well-played post from the Queensland branch of St John Ambulance.

Laughing out loud at this cartoon (and pretty much everything on Bird Wing Press).

Smiling – really widely – at the thought of the OzDOC two year anniversary virtual party that’s taking place tomorrow night on Twitter. BYO cupcakes!

Hope you’re all buckled in – the week is just beginning! Follow #NDW14 to keep up with National Diabetes Week.

What’s got your attention?

Keeping it nice

July 11, 2014 in Advocacy, Awareness, Diabetes, Language, Stigma | 6 comments

It’s the Friday before National Diabetes Week here in Australia. Over the next 10 days, diabetes will be in the press. A lot. And that means a lot of misreporting and a lot of people saying the wrong things about diabetes.

So, here are some of my thoughts about how to address this:

Stay calm. If you hear or see or read something about diabetes that is incorrect, don’t get angry. Send a balanced, calm response to the journalist, radio/TV station/person talking with CORRECT information. Be brief, use facts – dot points are good.
Know your facts! And that means no perpetuating other myths to bust the one that’s pissed you off.
Get over the type 1 versus type 2 thing. Seriously. Don’t bash the ‘other’ diabetes.
I send the Diabetes Australia Language Position Statement out to any journalist who uses damaging language when writing about diabetes. I tweet the link directly to journos all the time!
Naming and shaming is okay if you’re nice and polite about it.
Don’t engage. Make your point and walk away. There is no need to enter into an argument that will most likely get heated and result in abuse. Grace and dignity are amazing qualities; demonstrate them in spades!
Action! If you’re going to complain, make sure you actually do something meaningful with it. It’s all very well to bitch and moan amongst your peers, but find the source of whatever has upset you and write to them directly. (See point 1 for the tone to use.)
Follow up. And if you do take the time to write, you should expect a response. If you don’t get one within a reasonable time, re-send your correspondence.
Pick your battles. I can tell you now that no one has bucket loads of money to spend on diabetes campaigns, so no matter how much you want the government or diabetes organisation in your state to run a full-blown campaign explaining the difference between type 1 and type 2 diabetes, it’s not gonna happen. Accept it!
Remember that you know a lot about diabetes out of pure necessity. Don’t expect that same level of knowledge from everyone. Most of the stupid things people say are out of sheer ignorance or bad manners. Politely correct and move on.
There are some great resources out there that can help. Check out this and this.

The primary aim of National Diabetes Week is to raise awareness of the condition – specifically awareness about prevention of type 2 diabetes. Consider any misreporting or silly comments an opportunity to provide information and education in the hope that the people perpetuating the myths won’t do it again. And as your (and everyone’s) grandmother would say: Keep yourself nice.

It’s Friday! And it’s freezing here in Melbourne. I’m trying to imagine warm sun on bare skin, so here are The Beatles with ‘I’ll Follow the Sun’.

Secrets…

July 10, 2014 in Awareness, Social media | Leave a comment

From when I was a young whippersnapper of a girl, I kept a diary. It was very much in the ‘dear diary’ style and was full of age-relevant angst:

Dear Diary
It’s not fair! My sister is cuter than me and because she is younger gets all the attention.
Love (a 7 year old and clearly whiney – although right about her being cuter than me) Renza

Dear Diary
I hate my body. I wish I liked the way I looked.
Love (a 13 year old) Renza

Dear Diary
I really like the boy at the tram stop. Will he notice me?
Love (a 14 year old and yet to learn ‘he’s just not that into you’) Renza

Dear Diary
I’ve met a guy. I really like him. Like, REALLY. He might like me.
Love (a 20 year old) Renza

You get the picture. When I go back and read through my old diaries I laugh about the things that were taking up all my thinking time. And I sometimes feel embarrassed at the desperation I read in my words. Everything was such a drama!

But the thing I love about them is that I know that every word I wrote was honest. There was no need to sugar coat anything because the pages were for me and me alone. Really, these diaries are a candid snapshot – warts and all – of my rather boring life.

I don’t keep a diary anymore. There are times when I will sit down and write something about what’s going on, but it generally gets deleted or thrown away. Of course, I write this blog about diabetes – MY diabetes – but it’s only part of what is going on in my life. And whilst everything you read here is factual, there is a lot I don’t write about. Much of my story isn’t just mine – it involves all the people around me. Whilst I may in passing mention my family, friends or workmates, it’s not up to me to share their stories. Which is unfortunate, because believe me when I say they are far more interesting than am I (and the kiddo is hysterical!).

I am very conscious that I am not the only person reading this. And I want the three or four of you who do read Diabetogenic to like me, so I hide some of the more difficult aspects of living with diabetes. The result of this is that sometimes I give the completely false suggestion that I have it all worked out – which couldn’t be further from the truth.

It’s for this reason, that I love this Tumblr.

My Diabetes Secret is a virtual dumping ground that allows people to be honest about how they are feeling about living with diabetes. Because they can post completely anonymously, it is brutally honest. There is no need to censor the sadness or frustration or extreme anxiety that diabetes can bring.

I like to read it to remind me that I am not the only one struggling with this condition some days. The diabetes blogs I read (and the one that I write) lack a lot of the rawness evident in My Diabetes Secret. This is absolutely not because we’re trying to deceive. But putting things out there about just how much pain we are sometimes experiencing is difficult.

I love to read diabetes blogs and I love the people who write them. Our stories mirror each other frequently. They provide great comfort and they make me feel far less isolated.

But some days, I need to know that there are others feeling the extreme anger, anxiety and hate that I am about this condition. Whilst I don’t necessarily want to share details of it here – of those deep, dark fears that keep me company when I can’t sleep – it is incredibly reassuring to know that others feel the same way.

You can also follow My Diabetes Secret on Facebook here and on Twitter here.

The PWD are coming!

July 9, 2014 in Advocacy, Awareness, Conferences, Diabetes, DOC | 4 comments

Next month the annual ADS-ADEA Scientific Meeting will be held in Melbourme. This is the leading diabetes conference in Australia and attracts diabetes healthcare professionals from all over the country and boasts a program of outstanding local and international speakers.

This year, for the first time, there will be a consumer stream as part of the conference. This is really exciting because it seems that finally, after many years of petitioning (by petitioning, I mean whining), people with diabetes are actually involved and encouraged to attend.

Details of the Consumer Outreach day are below.

Someone has commented to me on Facebook that registration should be free for consumers and whilst I understand the reasoning behind that, I also know the costs involved in putting on a conference of this magnitude. I also know that sponsorship dollars are tight at the moment. I would urge anyone who wants to attend, but cannot afford it, to contact their local diabetes organisation and see if there is any way they can contribute to the costs.

I also know that having an event during the day on a Friday may not be ideal for many who work. But that’s the reality – conferences are held during the week. If you have any time in lieu owed, or an annual leave day you are prepared to take, this is a great way to spend it! Not only will you get to hear some interesting presentations, but it will be an opportunity to hang out with some incredibly awesome diabetes people.

Peer support for the win!

SCHOLARSHIPS AVAILABLE

#OzDOC will be providing two scholarships to cover the cost of registration for the event. To apply, jump on Twitter and send a direct message to @OzDiabetesOC. Make sure you include your email address in your message. You’ll then receive an application form. See you there!

DISCLAIMER

I am on the organising committee for the Consumer Outreach program. I am not receiving any payment for my involvement in this committee; however, my registration fee for the entire conference has been covered. I am also an invited speaker at the ADS-ADEA conference (at both the healthcare professional and consumer sessions and I have been involved in the submission of two abstracts that have been accepted for presentation at the conference).

Numbers

July 8, 2014 in Awareness, Hypo, Lows, Real life | 9 comments

1.13am – Heart thumping at what feels like 1,000,000 beats per minute

1.15am – 1.8mmol/l

1.15am – 10 jelly beans

1.20am – 1.8mmol/l

1.22am – 200ml pineapple juice

1.28am – 1.7mmol/l

1.28am – 10 jelly beans

1.28am – 1 pump’s basal rates reduced to -100% for 30 minutes

1.35am – 1.8mmol/l

1.39am – 1 piece of toast with 2 tablespoons of Nutella

1.45am – 1.8mmol/l

1.45am – 30 minutes under 2.0mmol/l

1.50am – 2 mandarins

1.55am – 1.9mmol/l

2.05am – 1.9mmol/l

2.05am – 5 jelly snakes

2.14am – 1.9mmol/l

2.15am – 60 minutes under 2.0mmol/l

2.15am – 200ml pineapple juice

2.29am – 2.0mmol/l

2.30am – 1 high 5 for hitting 2.0mmol/l

2.42am – 2.0mmol/l

2.55am – 2.0mmol/l

2.55am – 1 fridge raid resulting in 1 small tub peaches and 1 small tub yoghurt

3.13am – 1.8mmol/l

3.13am – awake dealing with this low for 120 minutes

3.13am – 5 very loud curse words beginning with f

3.15am – 20 jelly beans

3.22am – 2.3mmol/l

3.34am – 2.9mmol/l

3.48am – 3.2mmol/l

3.48am – first time in 2 hours and 33 minutes I’ve been above 3mmol/l

3.59am – 3.8mmol/l

3.59am – 1 deep sigh of relief

4.08am – start counting sheep. 1….2….3….4….

4.35am – 1 person with diabetes, wide awake, unable to sleep

Sometimes, it actually is all about numbers….

Eating disorders and diabetes – talking is important

July 7, 2014 in Advocacy, Awareness | Leave a comment

It seems that barely a day can go by when mainstream media doesn’t report on the latest ‘thinspro’ trend – always dangerous; frequently scary and mostly downright disturbing. In this weekend’s The Age was an article about a new phenomenon – the triple zero dress size. I can’t even fathom what that would look like, but I am no longer surprised when I read these articles.

A few years ago now, I managed a project about diabetes and eating disorders. The project was funded by the NDSS and the aim was to produce a national resource that would address the issues of diabetes-related disordered eating behaviours.

As is often the case, I started off thinking I had a pretty good idea of what the project would be about and how it would end up looking, only to realise how completely off the mark I was. I had no idea just how complex diabetes can make eating disorders. In addition to ‘traditional’ eating disorders, throwing diabetes into the mix meant addressing insulin manipulation, restriction and/or omission for weight loss. Often referred to as ‘diabulimia’ (a term that I personally despise for its sensationalist leaning), this issue has been covered in mainstream as well as diabetes-related media in recent years.

As our work started, I could see the complexity of this issue. We worked with the Centre for Adolescent Health at the Royal Children’s Hospital, Melbourne and developed an anonymous online survey and, from the results, a report addressing the most significant issues. The report focussed on women with type 1 diabetes aged 18 to 35 years.

One of the startling things to come from the research was how rarely insulin omission was actually discussed with HCPs. In fact, the survey showed that 85 per cent of females with type 1 diabetes had never been asked about insulin omission, and of these women, about 50 per cent were restricting or omitting insulin with the aim of losing weight.

We heard over and over and over again how isolated people felt. Frequently, we read comments where people thought they were the only ones engaging in this behaviour and thought there was nowhere to turn. They feared they would be judged by others and that no one would be able to help them. They were scared to mention their behaviour to their healthcare team.

Following the publication of the report, I did a lot of presentations at diabetes (and other) conferences about our findings and the resource that was subsequently developed. And one of the things I always spoke about was the feeling of isolation reported by the women who completed the survey.

The response to these presentations startled me at times. In the Q & A section of one session, a dietitian stood up and said she was horrified that we were developing a resource for people living with diabetes. ‘You’re developing a how-to for people’, she told me. I, in turn, was equally horrified at her response.

I think that, given the results of the survey (which were in line with international literature) we could safely say that many people with diabetes had put two and two together to work out insulin restriction results in weight loss. (Those of us who can remember our diagnosis often talk about the rapid and sudden weight loss we experienced prior to diagnosis and commencement of insulin therapy.)

Not talking about this very serious issue sends it underground. It contributes to the feelings of isolation we heard about and it means that people engaging in these behaviours feel unable to address them.

Instead, I believe we should be discussing diabetes and eating disorders – a lot – and ensuring that people feel safe and secure talking about it with their HCP, confident in the knowledge that they will not be judged and that there is help at hand. Sweeping it under the carpet does not make it go away; it just causes a lump that we keep tripping over.

In the recently launched resource for adult endocrinology trainees, Enhancing Your Consulting Skills, there is an entire chapter dedicated to eating disorders, including offering specific words to use to ask people with diabetes if they are engaging in insulin restriction or omission for the purpose of weight loss. This is a huge step forward!

Some (many?) of the things that go with living with a chronic health condition are incredibly difficult. This is indeed one of them. But just because it is hard and not easily defined or dealt with does not mean that we should ignore it or put it in the too hard basket. In fact, I believe, we should probably give more attention to it until it becomes something that is routinely discussed and assessed.

MORE INFORMATION

Eating Disorders Foundation of Victoria

Butterfly Foundation

Divided

July 4, 2014 in Advocacy, Awareness, Diabetes, DOC, Social media, Stigma | 6 comments

It’s been a big week. Of advocacy and misconceptions and stigma and messages getting lost.

DessertCalledDiabetesGate was exhausting and the wash up of it for me is really just how disappointed I am in the whole situation.

This post is not about trying to keep the issue alive – especially given that when I wrote about it on Tuesday I was suggesting we all just walk away. In fact, this post isn’t really about the café and the dessert at all.

No, this post is about how we, as a community, dealt with the situation and how, in my opinion, many of us got it wrong. And because we got it wrong, our real message was lost.

While many people asked the café politely to change the name of the dessert and were able to articulate the reasons why, many others got defensive and aggressive. Some attacked the café, others attacked individuals who disagreed with their stance. It got ugly at times – very ugly. Our community went from looking like people genuinely concerned about trying to stop stigma about our health condition to a bunch of wowsers.

And from there, it was a short leap to ‘Australians can’t take a joke anymore’ and ‘it’s political correctness gone mad’. Our community was attacked on Facebook, in the comments sections of news articles and on television. Studio 10 picked up the story and the show’s panel discussed it. Thanks to Jessica Rowe for being the voice of reason on the show who tried see the situation from ‘our’ side.

But that’s where the message got lost. It stopped being about diabetes. Instead, it became about people needing to lighten up and have a laugh. I laugh at myself and MY diabetes all the time. But I don’t do it at the expense of others. I would never make a joke about someone else’s medical condition or someone else’s diabetes.

We need people to understand why it’s not okay to call a dessert diabetes. We need people to understand the hurt and the stigma they are contributing to when they use this ‘humour’. We need people to understand that it’s not that we can’t laugh at ourselves – it’s just that we are a little sick of the misconceptions out there about diabetes.

We can’t get the wider community to understand our side when we get abusive or aggressive or get our messages mixed up. We can’t successful advocate anything if we can’t do it collaboratively, evenly and calmly. This doesn’t mean that we all need to agree – clearly there were some people who couldn’t have cared less about this particular issue – and that’s fine!

United we stand, divided we fall. This week, on this occasion, I believe we fell. Quite spectacularly.

There’s lots coming up in the next few weeks and if you live in Melbourne, you may be interested in these couple of events. These events are all run by Diabetes Australia – Vic. (I’m employed by DA – Vic, but they have not asked me to promote their activities here. I’m doing it simply because the events are great and people should try to get along if they can!)

Smack bang in the middle of National Diabetes Week, Diabetes Australia – Vic is hosting a movie evening where we’ll be showing a film called Sweet 16. It’s free, but bookings are essential. Here are the details.

If you are aged 18 – 25 years and live with type 1 diabetes, check out Connect – In – also coming up in July. It’s a weekend full of information and social activities. Details here – book quickly!

The latest in type 1 diabetes research and technology will be covered at the annual Research Revealed event on 26 July. Book now!

Hope you all have a great weekend. Here’s some Alicia Keys for your Friday and for my New York dreaming and planning.

Do happiness and health depend on each other?

July 3, 2014 in Awareness, Real life, Wellbeing | Leave a comment

Last night I was completing an online survey about wellbeing and came to the questions that asked about my health – specifically did I feel healthy?

The answer was yes, I do feel healthy. The only time I don’t is when I am dealing with a cold or virus of some description. Then I generally feel like crap and whinge a lot.

But I do have diabetes – a chronic health condition. Yet I’ve never thought that diabetes makes me unhealthy. Does the simple fact that my beta cells have been AWOL for over 16 years now mean that I am not ‘in the pink’?

To me, health has always been about more than those nonoperational beta cells? Surely that negative gets over-ridden, or at least balanced out, by the many positives in my life.

It had me thinking about health and happiness. I wondered how healthy we can be when we are feeling unhappy. I know that in times when happiness has seemed an abstract concept, I’ve not felt healthy. But this rarely has anything to do with diabetes. My diabetes numbers can look fine, but overall, I don’t feel great, perhaps because I am ‘not looking after myself’ and eating a well-balanced diet (or not eating at all). Perhaps because I just shrink away and don’t surround myself with the things that contribute to my happiness.

The next section of the survey focussed on happiness. Did I feel happy?

My answer to that question at that very moment was also yes. I was in our warm home, dinner was about to be served up to me and I could hear the kidlet in the other room playing with the cat – of course I was happy (the cat? Maybe not so happy as she was being killed with love and kindness)! I was then asked to list the things that contribute to my happiness. That was easy.

I have a family that brings me great pleasure. My husband and daughter as my immediate family, and my (rather huge) extended family of parents, sister, in-laws, cousins, aunts and uncles may be crazy and loud (and at times frustrating) but generally are fun to be around. There is a lot of laughter and isn’t that good for the soul and our health?

I have friends here and abroad who I love. They provide much support, joy and fun.

And I have a job that is rewarding and enjoyable and one for which I feel incredible passion. I feel very fortunate that my nine-to-five isn’t mundane or boring or devoid of any real interest.

I am very lucky to be able to regularly do things that I enjoy – I see a lot of movies and live music and sit in cafés and bake and cook and feed friends and travel and read.

These things contribute to my happiness. And contribute to my sense of wellbeing. Which contribute to my feelings of health.

I do believe that there is an inextricable link between happiness and healthiness. It’s tangled and can be messy. Perhaps happiness also contributes to emotional wellbeing and that leads to good health. I don’t know the answers here. All I know is that I answered ‘yes’ to feeling both happy and healthy. I should feel (and do feel) pretty fortunate for that.