Diabetogenic

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.

More stripes?

July 2, 2014 in Awareness, Diabetes | 5 comments

I’ve always believed that when you’re onto a good thing, stick with it.

The other day, I was shopping with the kiddo (she is definitely my daughter – loves a good afternoon of shopping!) when I picked up a striped dress. ‘More stripes, mum?’ she said.

In my cupboard, I have no fewer than 10 striped dresses, countless striped tops and several striped skirts. There are scarves, bangles, bags, purses and even underwear with stripes. Our kitchen contains stripy cups and mugs – all the better from which to drink a morning coffee! And my phone cover is also a fabulous clash of red and hot pink stripes. Admittedly, the situation has gotten a little out of hand – I have a friend who refuses to let me buy another striped t-shirt when we are shopping together.

But I love stripes – I love the way they look and I feel good in them. I can team them with jeans for the weekend or high heels for work. Easy!

So is it a matter of ‘if it ain’t broke, don’t fix it’? Or is it more of a rut?

I’ve been feeling like I’m in a diabetes rut at the moment. The days are the same and the results pretty average, to be honest. I’m feeling unmotivated and if I’m being completely frank, I’ve been like this for almost 12 months. In fact, since I miscarried.

It’s not that I’m not ‘taking care of my diabetes’, it’s just that I’m doing as little as possible to get through the day. I have bursts of micro-managing where I step up a little and do more. I look for patterns and contemplate basal rates. I do more correction boluses and focus on post-prandial numbers. But these periods have been short lived.

My A1c hasn’t been dealt too hard a blow, and if that was how we were measuring my diabetes, then I guess no one should be complaining. But I know (and you know) it’s more than that. The average means nothing.

But for this is it a matter of if it ain’t broke don’t fix it? Is this rut a problem that I should be looking for ways to overcome, or is it enough for the moment? And what will it take for me to decide that I need to step up and do more?

One thing I recommend to people who are feeling they need some motivation, is to invest in some new tech. If it’s time for a pump upgrade, get onto it. Or call your diabetes educator and ask for a new (FREE!!) meter. I’ve always found something new tends to inject (not funny) a bit of energy into my diabetes management. Maybe that’s what I need to do.

Or, maybe I just need to accept that this is one of those times when plodding along is enough.

Or perhaps it’s as simple as getting a new purse to house my existing meter. Perhaps something with stripes…

Asked and answered

July 1, 2014 in Advocacy, Awareness, DOC | 5 comments

I am all for a clever joke. Smart puns have me smiling wryly – and feeling a little envious, generally because I’m not intelligent enough to come up with them. Clever satirists and humourists are wonderful because they make us laugh and think at the same time.

But I am not for lazy, insensitive humour that adds to the stigma of diabetes (or any health condition for that matter).

A link to this showed up in my inbox yesterday:

I’ve removed the name of the café, because, quite frankly, I don’t want to give them any publicity. I left a polite comment on their Facebook page suggesting that they help stop diabetes stigma rather than contribute to it and change the name of the (rather yummy-looking) dessert.

When I left my post, there were a few little comments suggesting that perhaps the name was a little insensitive. At that time (about mid-afternoon), there were 33 comments after the photo of the dessert – most of them saying how delicious it looked with a couple of detractors asking the name of the dessert be changed. There was nothing abusive – nothing rude at that point. I then tweeted the café, pointing to the offensive name of the dessert, and shared the photo on my Facebook page, suggesting that people leave a polite comment on the café’s page about why such behaviour is stigmatising to people with diabetes. By 9.00 last night, there were over 180 comments after the photo as well as many ratings and stand-alone comments – all negative.

Here’s the thing. The post was stupid. It wasn’t funny.

But neither were a lot of the comments that followed. Threatening legal action (Really? For what? Bad humour?) does us no favours at all. Also, I couldn’t help thinking ‘pot, meet kettle’ at several commenters who were claiming the café was stigmatising diabetes – only to then add further misinformation with a ‘type 2s cause it themselves….’ type remark. Sigh.

Yesterday was Social Media Day and this exercise was an outstanding example of just how effective social platforms can be at getting messages across. It wasn’t a great day for the café – they received a lot of negative comments on their page. But they have dealt with it correctly.

This morning, the café issued an apology and have renamed the dessert. Their apology was short, to the point and generally fair. It would have been more endearing promising to make a donation to a diabetes organisation, but it’s a start. (Even MORE endearing would be finding a way to send me one of those desserts, because, yes, I can eat that!)

The café’s Facebook page looks significantly different today. All negative comments from yesterday have been deleted, and the ratings function has been disabled. Should they have removed the negative comments and stopped allowing ratings on their page? Social media 101 would say no, but I guess that is up to them to decide.

So what do we, the diabetes community, do now? Acknowledging the apology is important here, and so is moving on. Many people have said ‘not enough’ and continued to be angry and abusive. I think it is enough. I don’t believe for a moment that naming a dessert ‘diabetes’ was done with any malice at all. It was stupid and careless. But there is no way that it was a personal attack on those of us living with diabetes. But there is definitely room for a discussion about why diabetes continues to be seen as fodder for bad jokes, and mindless behaviour like this. Until we get the language about diabetes right, this will continue to happen. Again. And again. And again. That is the discussion I’m interesting in having now.

For now, our point has been made; the café listened to our request that the name of the dessert be changed. Walk away; there’s nothing to see here any more.

UPDATE

Just after this blog was posted, I was interviewed by Fairfax Media journalist, Rose Powell. Her article appears here.

Following on from this post, which I believe is quite gracious in its treatment of the cafe, I was disappointed to see the site has been flooded with positive comments – many of them incredibly offensive to people living with diabetes. The cafe has, in my opinion, undone its good work by allowing these comments to remain on their Facebook page.

Happy Social Media Day!

June 30, 2014 in Social media | 1 comment

‘So, um, I’m going out for dinner with people I met on Twitter’. I first said those words a few years ago when I was in New York. It was a freezing cold night and I jumped on the subway to meet three women who, until that very night, I’d only ever conversed with using 140 characters or fewer. They seemed okay – their tweets were amusing – and they knew the same people I knew. On Twitter.

I remember speaking to my mum who was back home in Australia and telling her I was heading out – in the dark, to an area I’d never been, without my husband or daughter – to meet these strangers. ‘So this may be the last time I speak with you’, she said to me.

Fast forward a couple of years, and I’ve been to countless dinners, coffees, catch ups and events that have been organised with people I’ve met on social media. Now, I don’t even think about it twice. It’s how it happens! Admittedly, these ‘strangers’ are part of the same community and we usually know a lot of people in common.

Many of the people I now call friends I’ve met thanks to social media. It could have started with a retweet, a ‘like’ on Facebook or comment on a blog. But from there, my online community – other people around the globe living with diabetes has grown and grown. And my offline community has too, as online friends become IRL friends.

Today, it’s Mashable’s fifth annual Social Media Day.

For me, I’ll just be quietly thinking about how much smaller and less diverse my world was before I took those first tentative steps and entered the online world. I’m a more connected, better informed person thanks to the social media revolution.

Something new

June 27, 2014 in Awareness, Diabetes | 1 comment

This week, I had conversations with two women who were embarking on something new and feeling overwhelmed. One situation was far more welcome than the other, but I couldn’t help draw parallels between the two.

Last night, we visited dear friends and their brand new baby boy. He is the picture of perfect health – tiny and round and pink. He has cheeks made to be kissed and a head of soft hair that frames his perfect, gorgeous face.

I spoke with the new mum about the delivery and her first few days with her beautiful little boy. I could hear in her voice confusion as she related stories of being told different things by different people. Who should she listen to? Was the midwife right? Or friends with kids? What about her mum?

Earlier in the week, I had a call from a woman who had recently been diagnosed with type 1 diabetes. She was about three weeks in and confused, stressed and scared. She felt that everything she was doing was wrong and was being given different advice from, it seemed, everyone she spoke with. Who should she believe? Her doctor? Her diabetes educator? Her friend who’d lived with diabetes for the last 26 years?

I listened to both these women and heard what they were saying. I had no advice for either of them – I just listened, and nodded and acknowledged the confusion. I didn’t want to add to their uncertainty by throwing my thoughts into the ring.

But I did try to reassure both of them. I wanted them to hear that they would be okay. I know that it sounds a little Pollyanna-ish to say that, but I really meant it. I pointed out that everyone makes mistakes or tries one thing and then another and then another until they find what works for them. That’s okay. And if the thing that works is different from what everyone around them suggests, that is perfectly fine.

I tried to acknowledge that their lack of confidence is understandable, but that as each day passes, and they work out their situation, they will start to feel more secure in their choices.

The thing I’ve learnt when it comes to peer support is that often, it’s not about just sharing your story. Although that’s a big part of it, the other side is listening and reassuring. People want to know that they will be okay.

Happy Friday – enjoy your weekend. Kick it off with David Sanborn. Bang Bang! (If this doesn’t get you up and dancing and clapping your hands, nothing will.)