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I’m still getting my head around the #HealtheVoicesAU conference – there was so much that happened over the event that it’s taking time to write about it all and really nut out what I took away from each session. (Previous posts here and here.)

When I looked at the program, I was probably most excited to hear from Nick Bowditch. I knew nothing about Nick other than what the program told us: He is the only person in Asia Pacific to have worked at Facebook and Twitter; he’s an entrepreneur who helps small businesses here and across the globe shape their online presence. And his personal health story is that Nick is a mental health advocate as someone who has lived with depression for many years.

I knew Nick’s talk would have lots to offer, and title of his talk that had me excited: ‘The Art of Storytelling’.

I’ve written before about why I love story tellers and story-telling. And telling my own story. It’s reading and hearing the stories of others with diabetes that helps put in context my own experiences. Others’ perspectives shape my own and I learn so much from how others deal with the clusterfuck that diabetes can be.

The first slide Nick showed us was of the wonderful Jamaa el-Fna in Marrakech. He told us how he spent an evening captivated in the square. There amongst the snake charmers and the men walking around with monkeys on leads and the little girls selling tissues and the vendors hawking fresh orange juice, were story tellers. And although he couldn’t understand a word they were saying, he was enthralled as they animatedly told their stories.

That’s the beauty and magic of a good story teller – you don’t necessarily need to understand the detail; just getting the gist of the tale is enough.

And then, Nick gave us the snapshot of his story. In a nutshell, he told us this:

Slide from @NickBowditch

It’s easy to make assumptions and think that you know what Nick might be living with if you see that list. But you’d probably be wrong. I know I certainly was. My initial ideas of what life must be like for Nick were turned on their heads as he put into context what each of the above aspects of his life actually means to him:

Slide from @NickBowditch

By turning our assumptions on their head and reframing how he lives with mental health conditions shows us that Nick is not ‘just coping’, he’s living. His words were: ‘These are not my defects. These are my superpowers.’ And it challenges us to reconsider our preconceived ideas. I know that those of us who speak about diabetes often challenge what others think.

The image of T1D being all about kids and needles and blood is not really what it’s about for me. And the far-too-easy idea that T2D is all about older, overweight, inactive people is wrong too.

When we tell our stories – and reframe the narrative – the truth comes out.

Possibly the most powerful thing Nick said was this: ‘Telling the truth is not brave. It’s easy. The hard thing is not being authentic.’ We’d come full circle back to the first speaker of the day who implored us to find authenticity in what we were saying. And it reminded me of why I have always been an advocate of having people with diabetes sharing their stories in any forum where people are talking diabetes: the legitimacy of lived experience cannot be found in any other way than actually having someone tell their story.

I see first-hand the power that having a person with a health condition stand alongside a healthcare professional and put into context the theory and research that they have just presented.

There is an art to storytelling. We do it every day that we tell our story. We do it every time we put words on a page for a blog post, or in a diary or in a letter, ot when we stand up and tell it like it is. Some do it far more elegantly and eloquently, but the things is; it doesn’t matter. As long as we’re authentic.

DISCLOSURE

Thanks to Janssen (the pharma arm of Johnson and Johnson) for covering my travel and accommodation costs to attend the #HealtheVoicesAU conference. There was no expectation by Janssen that I would write about the event and everything expressed here (and on Twitter Facebook and other social feeds) is mine and mine-alone! To read more, check out the conference hashtag, #HealtheVoicesAU, on the socials. 

It’s day four of holidays for me. Already lazy mornings, easy days and gentle plans to meet up with friends and family are clearing my mind, and I can feel the backlog of stress and exhaustion – the things that are part of everyday life – start to make way for sharp thinking and smarter decision making.

And in terms of diabetes this means more attention paid to alarms and alerts on my various devices: the calibration alert on my phone for my CGM gets attended to immediately, the low cartridge reminder on my pump is heeded at the first warning. I stop and think before blindly acting, and calmly troubleshoot as I go along.

My head is clearing. I am starting to think about diabetes the way I like, at a level that feels safe and sensible and manageable.  I make rational decisions; I take the time to fine tune what I am doing. Diabetes has a place that is comfortable, I feel better overall and far more capable of ‘doing diabetes’.

miles-study-2-logo-hires-land-colour-e1426127802906Earlier this week, the findings from the Diabetes MILES-2 study were launched. (Quick catch-up: MILES stands for Management and Impact for Long-term Empowerment and Success and is the work of the Australian Centre for Behavioural Research in Diabetes (ACBRD). The first MILES survey was conducted back in 2011, with over 3,300 Australians with diabetes taking part. The MILES Youth Report was launched in 2015, reporting the experiences of 781 young people with type 1 diabetes and 826 of their parents. This study formed part of the NDSS Young People with Diabetes Project for which I am the National Program Manager.)

The MILES reboot (Diabetes MILES-2) once again provides a snapshot of the emotional wellbeing and psychosocial needs of Australian adults living with diabetes. Over 2,300 people participated in this study and the results are comparable to those from the first MILES study. The Diabetes MILES-2 survey included the addition of some issues that had not been investigated in MILES, such as diabetes stigma.

Some key findings from the report include:

  • 17% of survey respondents had been diagnosed with a mental health problem at some point of their life
  • The respondents most likely to experience moderate-to-severe depression and anxiety were those with insulin treated type 2 diabetes
  • The respondents most likely to experience severe diabetes distress were those with type 1 diabetes
  • The aspects of life reported by all respondents as being negatively impacted by diabetes included emotional well-being (for those with type 1 diabetes) and dietary freedom (for those with type 2 diabetes)
  • More stigma was experienced by people with type 2 diabetes using insulin as compared with people with type 2 diabetes not using insulin

Anyone affected by diabetes knows that the psychological and emotional side of diabetes is as much a part of the game as the clinical tasks. In fact, for me, it is the most difficult to deal with. What’s going on in my head directly affects how the I am able to manage the practical side of the condition.

When my head is clear – the way it is slowly, but surely becoming as I settle into holiday mode – and I have time and space to rationally think about, and focus on diabetes, the routine tasks seem manageable. The numbers present as nothing more than pieces of information: they allow me to make decisions, act, or not act. I am able to be practical and seem to have my act far more together.

But for the most part, diabetes is not like that for me. I don’t manage my diabetes the way I want and that is mostly because I am simply unable to due to the distress and anxiety I feel about living with a chronic health condition that terrifies me a lot of the time. I feel overwhelmed and, in the mess of life, diabetes becomes impossible. I am not proud of this – but I am honest about it.

If I am perfectly truthful, there is nothing in this report that surprises me. But it does provide validation for how I am feeling – and how many others with diabetes are feeling too. And I am so pleased that there is evidence to support what so many of us who live with diabetes feel.

It’s no secret that I am a very big fan of the ACBRD’s work. Diabetes MILES-2 once again shines a light on the ‘other side’ of diabetes and serves as a reminder that unless the psychosocial side of living with this condition is addressed, we simply can’t manage well the physical side. And it forces those who want to believe that diabetes is a matter of nothing more than numbers and mathematical equations to consider the emotional wellbeing of those of us living with diabetes each and every day.

The MILES 2 report can be read online here.

 

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It’s day 2 of Diabetes Blog Week, and the silver lining of being awake at 5am this morning was that I managed to catch up on most of the posts from day 1. This week comes from Karen Graffeo who, as she commented on my blog yesterday, I’ve not met. But we will be remedying that very shortly so I can hug her and say thanks for this. And make her buy me a coffee to help manage the sleep I’ve lost each year (and am yet to make up!) since taking part in #DBlogWeek.

Today’s prompt:  We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?

Just this morning on Twitter, I was having a conversation with a few people and eventually I found myself commenting on the emotional side of diabetes. The discussion was specifically relating to someone who had recently started using an insulin pump and I made a comment about how the learning curve could be steep and to take it easy.

Someone jumped in and said that he found the learning curve to not be steep at all (which is great and also highlights the different ways different people respond to diabetes). He commented that he thought it was pretty straight forward and that most people should be able to follow some basic principles – such as timing of glucose checks and understanding what happens around food and insulin (a movable feast as far as I am concern – there is no understanding, just watching with confusion at why something worked yesterday but not today….).

This may be true. There probably are some principles that could be consistent for most people. However, this was not addressing everything I was referring to which may contribute to the gradient of that learning curve.

Matters such as insulin dosing, timing of glucose checks and counting carbs are, just like working out which buttons to push on the new device, technical. But I believe this is certainly not the only side to diabetes.

I pointed out that it was more than just the technical side to a pump start and commented as such, adding ‘emotional concerns of ‘attachment can be difficult for some, explaining in my next tweet that the term attachment was referring to being connected to something 24/7. (This is something that almost everyone I have ever spoken to has mentioned as a real barrier to starting on a pump or other wearable device – the idea of a constant, attached to the body reminder of diabetes. It was even a discussion last Friday at #DX2Sydney.)

Too often, some forget that diabetes is not about only about operational matters. The equation of ‘you eat, you take insulin to cover the food and then you are all good to go’ does not hold true. In the case of technology it is not, ‘you learn to press buttons and then you are fine.’ Just as I am much more than my diabetes, my diabetes is so much more than food, medication and devices.

When people ask me what I find the most difficult about living with diabetes, I am able to answer without hesitation. For me it is a combination of the relentlessness of the condition alongside the way in permeates all aspects of my life. It is particularly disturbing and distressing for me when it impacts my family who shouldn’t have to deal with diabetes.

I don’t have the answers or know how to fix these troubles. But I do know that there are a few things that help.

  • I have learnt to be kind to myself.
  • I have learnt to not compare myself with anyone else.
  • I have learnt that this too will pass – even the darkest diabetes moments have had light somewhere.
  • I have learnt to rely on the people around me who love and support me.
  • I have learnt that the moment that I get complacent and think I have this diabetes thing sorted, I absolutely don’t.
  • I have learnt that looking to the DOC provides me with a million things I’ve not thought of, and one of those things may work for me today.
  • I have learnt that sometimes I need to draw a line in the sand, call it a day, and admit that diabetes is winning right now. But that doesn’t mean it will tomorrow.
  • I have learnt that when all else fails, the things that make me feel best are a hug from Aaron and the kidlet, a message to one of my far away diabetes friends, a perfectly made coffee or a glass of Prosecco, and something to take my mind off diabetes.
  • I have learnt that even though I have really had some dark emotional days with diabetes, I get up and do it again tomorrow. Because that is the only option.

burn out and come back again.

There are only 52 weeks a year. There are only 365 days a year.

There are so many important and worthwhile health messages that need awareness and funding and attention. And this week, there is a lot going on.

As I wrote yesterday, it’s Women’s Health Week. (#womenshealthweek)

It is also Body Image and Eating Disorders Awareness Week where the aim is to raise awareness of eating disorders while also promoting positive body confidence. (#BIEDAW) Tying in with this, the Butterfly Foundation has also named the week Love Your Body Week. (#loveyourbodyweek)

And today is R U OK? Day – a day where we are encouraged to check in with our friends and family and ask the questions ‘Are you okay?’ The idea is about finding ways to communicate effectively and comfortably and check how people are. Have a look at the national awareness campaign, ‘Thanks for Asking’. (#RUOK)

But wait; there’s more.

It is also World Suicide Prevention Day. The theme for this year is ‘Preventing Suicide: Reaching Out and Saving Lives’. More here. (#WSPD)

All of these initiatives are important. Each one needs attention. Mental illness and mental health run through all of these health weeks, and we know that talking about mental illness helps reduce stigma and, hopefully, have more people knowing where to seek help.

Keeping up with what is going on with all the different awareness weeks and days is almost a full time job! It’s easy to feel overwhelmed by the barrage of health messaging and the calls to action.

I would receive dozens of emails each week from different health organisations highlighting why their week is important, why their condition or their messaging needs attention. I rarely disagree. Reputable health organisations spend a great deal of time and effort development their messaging. There is considerable attention given to campaign materials and promotional activities. Each and every ‘cause’ is worthwhile and I want to be involved in all of them.

But it’s just not possible to do it all.

Today, however, I am watching this from NCD Free which has been released just in time for World Suicide Prevention Day, which looks at the link between chronic kidney disease, alcohol use and suicide in rural Sri Lanka.

Plus, I am checking in with people and asking how they are doing – with the very conscious understanding that R U OK? day is not a tick box event that once it’s over means I don’t need to check in on people on other days.

And I am reading the Thursday messaging from Jean Hailes for Women’s Health which today focuses on way to manage our health – who and what to ask.

I am also considering body image – my body image – and how I’ve recently been feeling about myself and how I look.

And on top of all that, I am keeping up with everything on social media and hashtagging (not a word!) the hell out of it all.

Next week, it will start again – with something else. Something equally important; something equally needing attention. And it happens all alongside the health condition that I manage each and every day. Because even if it isn’t on the calendar, every day to me is diabetes day and each week is diabetes week.

National Diabetes Week is an important week for people living with diabetes in Australia. It is an opportunity to have all types of diabetes given attention and focus in the media and to talk about the significant health issue it is – for people living with diabetes, their families, and health systems.

And sometimes, messed up in the campaigns and the social media onslaught, we get sidelined by arguments and heated discussions, and we start to forget one of the real reasons this week is important: how diabetes affects those of us actually living with the condition.

Today, I helped launch a new report. The Diabetes MILES Youth survey was conducted last year and the results have now been published. The survey aimed to examine the impact of diabetes on young people living with diabetes and their families.

The report (which can be found here) shows that a quarter of young people living with type 1 diabetes experience moderate to severe depressive or anxiety symptoms.  This image shows the top problem areas for girls and boys.

MILESYouth

Today’s launch was incredibly powerful. Of course, we heard the statistics and heard how significant the problem is (a third of parents of children with diabetes reported impaired emotional well-being). And we heard about why this sort of work is important. But for me, and I suspect most people in attendance this morning, the most powerful moments were when we heard from Ryan Lange and Freya Wickenden, two young people living with diabetes.  Both spoke beautifully about the role diabetes plays in their lives. Freya’s mum, Dallas, also spoke and shared some insights into parenting a child with diabetes.

MILESYouth2

As I said in my presentation at the launch – I can speak about this for hours and hours. I am a passionate advocate for all people with diabetes, but the vulnerability we see so often in young people with diabetes has meant that this has become a focus area of my work.  But my words are insignificant and unimportant. It’s the words from young people living with diabetes that are central to understand what they are facing. Here is just some of what they told us.

 

The Diabetes MILES Youth report – was funded by the National Diabetes Services Scheme, and initiative of the Australian Government administered by Diabetes Australia. The study was conducted in collaboration with Australia Centre for Behavioural Research in Diabetes. The Diabetes MILES Youth project is part of the Young People with Diabetes National Diabetes Program for which I am Program Manager.

 

Baby, it’s cold outside. It really is. I am shivering my way through most mornings, cursing the cold and complaining about how far away Summer is. Which is all really weird because I think the coldest it’s been is about 7 degrees (Celsius), and a mere few months ago, I was delighted and delighting at the New York snow. I think that’s what I need. Snow in Melbourne. Snow makes the cold worth it.

Anyway, sit somewhere warm and have a read at what I have been checking out lately.

She quits helmets

I’ve made no secret of the fact that I think Sarah Wilson is a fool. She has done nothing to alter that opinion with her rant and rage against mandatory helmets for cyclists. She wrote this at the end of last year and it has resurfaced, once again showing how irresponsible and downright stupid she is.

If I had a superpower, it would not be flying or invisibility or a magic unicorn. No. It would be to mute people who are dangerous; people with D-grade celebratory status with a following who sprout harmful rhetoric. Sarah Wilson would possibly be first on my list.

beyondblue

Yesterday, this media release from beyondblue had me cheering. Raising awareness about men’s health – in particular men’s mental health – is a tough gig and beyondblue are doing a damn fine job trying to cut through.

Inside Out

When I saw the preview for the new Pixar film, Inside Out, I was so excited. What a gentle, fun, and enjoyable way to talk about mental health with kids. I couldn’t wait to see it. I still can’t. Aaron took the kidlet and one of her friends to see it while I was in the US and they all thought it was terrific. And it has sprouted some really interesting discussion about the topic.

I love this article which talks about the importance of having a strong female character as the protagonist of the film who is not a princess.

Jenna from the Block

A few years ago, Jenna and Josh were contestants on the Block. Josh was diagnosed with type 1 diabetes a couple of years ago, and this moving story from his wife, Jenna, is doing the interweb rounds here at the moment. Thanks for raising awareness of diabetes, guys!

Up your nose

Glucagon injections are not fun. They are not fun for the person who is jabbed (the jabbee?)– mostly because it means that they are having a nasty hypo that warrants being jabbed – and they are not fun for the person doing the jabbing (the jabber?).

Under what is usually an incredibly stressful situation, the ‘jabber’ has to open the little orange box, draw up things into a syringe, shoot it out again, mix it up and then inject it.

Not. Fun.

So, it is with great interest that I have been reading about the trials of inhalable glucagon. Read about it here.

Friends like this

My friend Alecia is awesome. She is uber-talented (her jewellery designs are stunning and her lighting designs a marvel) and is so much fun to hang out with – even if she makes me drink things that taste like orange bathroom cleaner.IMG_6629

We hung out recently in NYC, where she took me to a gorgeous place for dinner and we ate the best Brussel sprouts ever. And then I took her to hear some jazz where she made guitarist Mike Stern kiss me three hundred times so she could get the perfect photo. I didn’t complain. Neither did he, actually.

She is also slightly crazy. But she is crazy for a cause which, I guess, makes it kind of okay. Next month, she is going to be riding 100 miles on a bike. In our language that’s 161 kms. In whatever language, that’s a long way.

If you can, throw her some coin. All money raised is going towards finding a cure for diabetes. Which she has had for 36 years, and since 2001, has raised over USD$350,000 for a cure for type 1 diabetes. I did mention she’s awesome right?

Music and words

Most weeks, I post a link to music I have been listening to. This is fun. And embarrassing at times. But I also think that I should start to post links to some of my favourite JK Rowling quotes because the number of times she beautifully and succinctly manages to say something that I have been trying to bash out is startling.

For all the blog posts and talks I’ve ever given on the importance of language, I could have simply said this.

JK Rowling

Remedy injury. Always.

Gallery

One of the best films ever is the Peter Sellers’ classic The Party. A couple of years ago, we bought our first ever Josh Agle (known as SHAG) print which is a tribute to this fabulous film.

It was the first in The Party series. Somehow, we completely missed the release of the second print (and now can’t find one anywhere!), but a few weeks ago, when visiting Outré Gallery, we saw and bought the third.

Last night, after a couple of hours of lining things up, measuring things, banging hooks into walls (very satisfying), we finally have our SHAG gallery done.

It looks spectacular and this photo absolutely doesn’t do it justice – mainly because it was really difficult to get the whole wall in one photo. Those larger photos in the middle are each about 150cms wide. Nonetheless, here it is! And we can’t stop looking at them!

Drink Nutella

I mentioned it’s cold, right? Well, here is a nice way to warm you up. Nutella hot chocolate. Just because.

One of the highlight sessions I sat in on at ADA was Dr William Polonsky. Bill is the Co-Founder and President of the Behavioural Diabetes Institute, which you can read all about here. He also wrote the book Diabetes Burnout which is on the shelves of many, many people living with diabetes. I refer to it ALL THE TIME, and my copy has become incredibly dog-eared and annotated in recent times. And there was a period of about 6 months where I carried it around with me like a security blanket. (If you don’t have it, you can order it here.)

I’ve seen Bill speak at other conferences I’ve attended – he is one of the speakers I always make a point to hear because he absolutely ‘gets’ diabetes. His talks are always informative, amusing and offer great take-home messages for the mainly-healthcare professional audience. And he is gentle, kind and completely and utterly non-judgemental.

Yes – I am a complete and utter fan girl! But I did manage to keep myself together when I spoke with him a couple of times at the conference. And only slightly squealed when I heard he would be coming to Australia later this year. (Watch this space!)

His session at this year ADA had the title ‘Caring for the patient who doesn’t seem to care’ and right off the bat, Dr Polonsky highlighted the word ‘seem’ in the title.

He started by asking the audience how many of them had, in the past year, seen a patient who didn’t seem to care about their diabetes. Just about every hand in the room went up. Of course they did. Because for many – most? all? – of us living with diabetes, there are times when it all gets too much and we seem to not care.

But then he reminded everyone that even those who seem to not care about their diabetes want to live long, happy, healthy lives.

I don’t know anyone with diabetes – feeling good or not so good about their management – who isn’t hoping to be healthy. No one wakes up in the morning and says they want to have a crappy diabetes day. No one says ‘Diabetes is too much for me at the moment. I hope I have a really bad hypo.’ No one.

In times of burnout, where I absolutely know it looks like I couldn’t give a toss about my health, I wish so hard that I could find ways to break through the exhaustion and lack of motivation and find a way – any way – to do better at managing my diabetes.

Other take home messages from Bill’s talk included the importance of talking about diabetes with a sense of urgency – however without threats. I loved how he suggested a reframing of the oft-quoted ‘diabetes is the leading cause of <insert complication>’, reminding us all of the following:

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Dr Polonsky’s take home messages from this talk were many. He provided some strategies for what might work – and some that should be avoided.

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I listen to talks like this and think they sound so logical and sensible, and wonder why it even needs to be said. But of course it does. Because sometimes – all too frequently – there is this idea that not managing diabetes as expected is a deliberate choice. Or that not getting the results that we all ‘should’ be getting is the fault of the person living with diabetes. Thank you to Dr Polonsky – and others like him, including Martha Furnell, Jill Weissberg-Benchell and our very own Professor Jane Speight – for understanding that there is no fault here. Just a need for better understanding and support.

 

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Being a total fan girl here! Dr Polonsky is my hero.

 

Yesterday, as I sat in the waiting room to see my endo, I couldn’t help but feel that I was walking into a wasted appointment. I had seen her about six weeks earlier and left with promises to myself of being more engaged with my diabetes care. I promised I would have my blood work done. I thought about goals and how I could work to achieve them.

And yet, there I was, waiting to go in and wondering what the hell I had to say to her. There would be no discussion of lab results. I haven’t gone to pathology to have the checks done. There wouldn’t be any pulling out of data for me to show her – I hadn’t been logging anything. I was pretty much in the same state of mind about my diabetes as I had been last time I sat waiting to go in to see her.

I was wasting her time and I felt really bad about it. Not that she would ever tell me that. In fact, not that she would even be thinking that. But it’s how I felt. I have such respect for this endocrinologist, and I felt that in some ways I was actually being disrespectful in showing up so unprepared.

There were no tears yesterday. But there was an honest and open admission from me that I need help. I have tried everything I know to try and pull myself out of the motivation slump I have been in for so long. There are been periods where things seem to be better and I am able to make more of an effort, but they are fleeting and before long, I am back to feeling burnt out.

Let me be clear – I am not completely ignoring my diabetes. I am bolusing insulin at all the appropriate times; I check my blood sugar, albeit nowhere near as much as I know I need to – or that I would like to; I have started seeing my endo again. I eat well. At no time has diabetes completely fallen off the radar. But it certainly has deviated from being as much of a focus as I would like.

It’s not the mechanics of diabetes that is the problem. It is the trouble-shooting and problem solving and thinking about diabetes in a way that makes me feel confident that I am dealing with my health and wellbeing as much as my blood sugars. But I’m not doing that. I’m in a fog of burnout from which I now know I am unable to emerge without some real help.

I can pinpoint the source of the burnout; I can trace its progression; I can see why it happened. I understand all of that. I understand that dealing with the loss of our baby following a miscarriage and all the things that happened around it were often all I could deal with – both at the time and for periods since then too. But even though I have words to explain how this has happened, I don’t have actions to get me out of it.

I’ve tried. I’ve tried everything I could think of – all the techniques that have worked in the past. But I suspect that the combination of grief and the longevity of this burnout have resulted in me simply not being able to fix it alone. I need help.

I also believe that tied up in all of this is the way that I am feeling about my body and its failings. Because I do feel I have failed. Or at least my body failed me – again – when I miscarried. I really did think that I was ‘over’ it and was moving on, but not a day goes by where I don’t, in some way, feel sad and broken about it. I don’t know how to stop feeling this way. Again, I need help.

So, I asked for a referral to someone who can help me work though things – someone to help with strategies. I have been in therapy before; I know that it will help. It’s not a quick fix – I know that too.

I am trying to be all Pollyanna-ish about this and make grand ‘the first step is the hardest’ statements. And I am being positive and saying that it is certainly a step in the right direction. It’s going to take time. It’s going to take effort. Perhaps I am ready for that now. I know I certainly haven’t been to date. But maybe – hopefully – I am now.

ACBRD5Last night, I had the privilege of attending the fifth anniversary celebrations for the Australian Centre for Behavioural Research in Diabetes. The event was held at my favourite Melbourne building – the State Library – so I was able to get my geek girl on and wander the stacks before heading to the reception.

I have written frequently about the ACBRD because I am a huge fan and supporter of their work. Before the Centre was established, there was very limited attention being given to the psychosocial impacts of living with diabetes. Diabetes was presented as a numbers game. People with diabetes were talking about what living with diabetes actually meant – we understand the day-to-day implications and the distress and the burnout and the fear and the anxiety. But there was no one dedicated to researching these things.

Much work has been completed since the Centre started. All of it is of great value, but there are certainly some stand-out pieces for me:

  • The Diabetes Australia Language Position Statement, led by the ACBRD, which was launched back in 2011, is a much-needed ‘guide’ to assist journalists and HCP understand how to speak about and to people with diabetes. I can’t think of the number of times I have emailed, tweeted, handed-out a copy of this report to someone who has referred to PWD as non-compliant, a ‘diabetes sufferer’ or something equally damaging!
  • Dr Jessica Browne, Research Fellow, has been leading a world-first program researching the social stigma of diabetes. Reaching far and wide (Washington Post, anyone?) it is so wonderful to have evidence supporting what we have heard from PWD for so long – diabetes is stigmatising and that we often feel blamed and judged for having this condition. I’ve said it a million times and I will continue to say it until the stigma stops – ‘No one asks to get diabetes.’
  • The Diabetes MILES report still remains an important body of work. It was the first time that the psychological wellbeing of people with diabetes was investigated and the results confirmed what people living with diabetes already knew – emotional problems associated with living with diabetes are common, considerable and a very real part of living with diabetes.

The thing I love about the Centre is that in addition to conducting research and publishing articles, they actually provide practical tips and advice to HCPs about how to address these issues and concerns. And most pleasingly, they speak directly to and consult with people with diabetes.

As I explained in my talk last night, I have been lucky enough to present alongside Foundation Director Jane Speight on numerous occasions. The way this works is that I get up, rant, rave, wave my hands around and talk about the ‘living with it’ experience and then Jane gets up, speaks incredibly eloquently and provides the evidence to support what I have said. (So, thanks for making me look good, Jane!)

The always eloquent Professor Jane Speight. And me. Waving my arms around.

It was an honour to be able to celebrate the Centre’s first five years’ successes last night. Congratulations to all the ACBRD staff. Looking forward to seeing what you all do next!

Cookies!

Cookies!

I’ve just had a wonderful long weekend where pretty much every moment we were home, the oven was on with cakes, biscuits and pies filling the house with beautiful smells.

I spent the time out of the house doing the things that build me up – playing in the park and soaking up the sun, visiting bookshops, going to galleries, drinking coffee. We added artwork to our SHAG collection and I added a couple of new bracelets to my Kate Spade arsenal. I danced to Taylor Swift in the kitchen with my girl and watched Better Call Saul with my boy. Family dropped in, cups of tea were drunk, neighbours were visited. I took a Twitter break. We chased the moon. International Women’s Day was marked.

It was a good weekend – a great weekend.

Now showing on the wall in our living room.

Now showing on the wall in our living room.

And yet.

I start the week with a ball in the pit of my stomach and am incredibly distracted. I have an appointment tomorrow with my endo. And I am terrified.

It’s been too long since I last saw her. And if truth be told, I really don’t want to see her. I don’t want to sit there and discuss diabetes – my diabetes – and talk about how I have really dropped the ball. (Understatement.)

I don’t want to talk about the burnout that has overwhelmed me for so long and even though I feel myself emerging – there are glimpses of brightness – I don’t want to admit just how much it has affected my diabetes self-care.

I don’t want to discuss complications screenings. I don’t want to talk about them. I don’t want to know. I don’t want to face things.

I don’t want to sit in her office and cry, which I know is exactly what I will do the moment I sit down and she asks me how I have been in her incredibly non-judgemental, beautiful, concerned and caring way.

New jangly bracelets.

New jangly bracelets.

Throughout the last few days, in the middle of all the lovely stuff, I have paused and taken stock and thought of my upcoming appointment. I have thought about how it will play out. I have considered how, after the tears and admissions of feelings of guilt, I will leave feeling stronger and more determined – I always do after seeing my endo. But I am still scared and anxious about it all. I know that the truth of what has been going on scares me and the possibility of what has been going wrong. All of this terrifies me beyond belief.

I needed the long weekend to build me up and help with my resilience stores and I feel that it certainly did that. My support network is strong and I have people around me who are so gentle in the way the support and encourage me to live well with diabetes.

So with this in mind, I am focusing on getting through the next couple of days. And what happens after my appointment.

An expensive trip to Readings

An expensive trip to Readings

A full biscuit tin, an armful of noisy bangles, a library of new books and a gorgeous new Josh Agle artwork on the wall are all helping and keeping me grounded. All things I need as I face a tough week.

It’s #DBlogCheck day. Read about it here and go and give some love to – and leave a comment on – some of the diabetes blogs out there that help make up this wonderful community.

Read about Renza

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