Diabetogenic

Is this the future of medical education?

February 26, 2014 in Awareness, Diabetes, Healthcare team, Wellbeing | 2 comments

On Saturday night, before delving into the craziness that was White Night, I attended the launch of a terribly exciting new resource. Enhancing Your Consulting Skills; supporting self-management and optimising mental health in people with type 1 diabetes is described as an ‘education resource for advanced trainees in endocrinology and other interested health professionals’. That’s right. It’s written for health professionals who will be working with and for people with type 1 diabetes.

I attended with a dear friend who shares my pancreatically-challenged state. We also share the same endocrinologist – one of the collaborators on the resource – and were there at her invitation. We know just how lucky we are to see an endo who understands self-management, ‘gets’ the fact that burnout happens and doesn’t have a judgemental gene in her body. We know that having an endo who we can email in between appointments is a privilege we would never abuse. And we know that living in the inner city means that we have access to healthcare that many others can only hope for.

Hopefully, this resource will mean better education of new endo trainees and that the care we are so fortunate to receive will be available to many more people with diabetes.

This resource is a huge step forward in medical education. It is the first time that the needs of people with type 1 diabetes have been directly addressed with a strong focus on self-management and mental health. As Professor Alicia Jenkins highlighted in her speech, people with type 1 diabetes spend, on average, three hours per year with their healthcare team. The remainder of the time we’re doing it alone. There is no treatment option other than self-management and an understanding of how HCPs can support that is critically important.

Endocrine trainee, Michelle, gave a candid speech how she has come to view people living with diabetes. She said that when she first started attending a young adults with diabetes clinic, she was frustrated and said that she blamed her patients for not getting the results she expected. This honesty was refreshing and it was so pleasing to hear how she now knows to focus on the positives rather than negatives when working with PWD.

Dr Jennifer Conn gave a warming speech about how she never stops learning from her patients. This humble attitude is one of the reasons that this book is so well written. It acknowledges the expertise held by the person who lives with diabetes and knows their condition better than anyone else possible could.

I looked around the room and saw that there with the glitterati of the diabetes HCP world, were some of the pancreati – the people with diabetes who the book was written for. It’s a tribute to the writers and organisers of the launch event that people with diabetes were invited.

I’d like to congratulate the team who have put this together, and the NDSS for supporting the development of the resource. This is a win for people with type 1 diabetes and I can certainly see similar volumes being written for type 2 diabetes and, indeed, other chronic health conditions.

At the end of the event, I wandered back out onto the Melbourne streets, waiting for nightfall when the city would light up and fill up with hundreds of thousands of people. I looked at my friend and thought how lucky we are – a night of Melbourne brilliance kicked off with hope for a better future for people with diabetes.

Disclaimer

One of the collaborating writers involved in this resource is my endocrinologist. I was asked to provide comment on some sections of the book and my photo and a screen shot of this blog are included in the final book. I did not receive any payment for any of this involvement.

The development and printing of this book were funded by the National Diabetes Services Scheme (NDSS) which is administered by Diabetes Australia. I am employed by Diabetes Australia – Vic.

Pages

February 25, 2014 in Awareness, Diabetes, DOC, Real life, Social media, Wellbeing | 2 comments

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

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

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

Diabetes Art Day 2014

February 3, 2014 in Awareness, Diabetes, DOC, Family | 5 comments

Today is Diabetes Art Day. The last time I took part in Diabetes Art Day was in 2012 when, instead of making art, I looked at it. We were in Rome and spent the day wandering around the Sistine Chapel. But this year I decided that it was time to actually produce something. I’m not a great artist. In fact, our daughter overtook my drawing abilities when she was about…oh, maybe 12 months old. However, Diabetes Art Day isn’t about producing perfect works of art. It’s about thinking about how diabetes can be represented in ways other than words (I kinda missed the brief as you will see below).

So in an endeavour to do something quiet and cool (and indoors) to escape yesterday’s sweltering heat, my family sat around our kitchen table and made some art. Out came coloured paper, crayons, textas, colouring pencils, stencils, stamps and anything else in the craft basket that looked like it might be fun.

And then we drew and collaged and stamped. I decided to use lots of different colours and place the blue circle over the top. I liked the idea of a rainbow-esque kaleidoscope of bright and not-so-bright colours because to me, that’s how diabetes is. And while the elusive pot of gold at the end of the rainbow may be a cure, there is still hope in between even if we never actually find it.

Hope. For me, there always needs to be hope….

And the kiddo and Aaron came up with these gorgeous pieces.

Is that a Twitter bird I can see?

More colours and a blue disc of hope.

So, here is our family’s contribution to Diabetes Art Day. I’m going to frame the pictures and put them up in my office so that I can be reminded that sometimes it helps to look at diabetes in a different way.

Postscript:

And then I got a little carried away with the stamps and did this:

Follow Diabetes Art Day on Twitter: #DArtDay

Yawn

January 31, 2014 in Diabetes, Real life | Leave a comment

For the first time in a while, I woke this morning feeling rested. I realised that it had been some since I’d had a solid night’s sleep without getting up for anything. And it felt good!

I’ve always been someone who can fall asleep at the drop of a hat. Sitting in the passenger seat of a car for more than 20 minutes is all it takes for me to doze off (I’m really not a great driving companion). And I think that in all my travels I’ve been awake for take-off maybe twice. The second the plane starts taxiing, I’m asleep. Caffeine doesn’t affect me and I can sleep in bright light and through loud noise.

When I was diagnosed with diabetes, one of the most difficult things to deal with was the need to wake at a certain time (much earlier than I was used to) so I could have breakfast and take my first insulin shot for the day. I can still remember the relief I felt when I started using a pump and could go back to sleeping away half the day if so desired (as it often was).

I worried about how I would cope with the promised sleep deprivation that a baby would bring, but pure luck delivered us a baby who slept through the night from an early age and who, even now, sleeps in on weekends and over holidays and knows to leave the grown-ups alone if she rises first.

But lately, sleep hasn’t been coming easy. Between the heat (and resulting hypos), getting used to sleeping in a new house and waking due to pain in my right eye following my second cataract surgery, I haven’t really had many nights of restful slumber. Plus, it doesn’t help that the allure of ‘just one more episode’ of Breaking Bad is reducing the number of hours spent in bed.

The nights disrupted by diabetes result in days disturbed by diabetes. I find myself yawning and finding excuses for more coffee to try to keep me alert. And I think about sleep – and then stress because I’m tired and not sleeping properly. I feel sluggish and slow and find it difficult to stay on task. And I spend most of the day banging on about how tired I am because I didn’t get enough sleep.

Which, apparently, is the problem.

I read today that just thinking about sleep positively can impact on performance. This study published in the Journal of Experimental Psychology says that complaining about not getting enough sleep is the reason that performance suffers – not the actual lack of shut eye. There’s a placebo effect for you!

I’m not sure if that’s true, but given the number of nights diabetes does reduce the hours of sleep I get, perhaps some positive thinking is in order. Diabetes unfortunately means that there are nights of broken sleep. Maybe instead of complaining about it, I just accept it and think about the time I was actually dreaming and how good that was. Or look forward to the sleep that’s coming up.

Also, maybe a limit on the number of Breaking Bad episodes would help too. Just saying.

All grown up

January 30, 2014 in Awareness, Family, Guest post, Real life, Social media, Travel | 2 comments

This week, the new school year starts for many kids and teens in Australia. I proudly watched our big nine-year-old walk into her new classroom – seemingly confident and secure. As parents, we know that with each passing year, we have to hand over a little responsibility as our kids grow up. We need to foster their independence and celebrate it, even at times when we want to bundle them up and try to protect them from the big bad world.

Today, my dear friend Catherine Forbes, writes about how her family is navigating independence with their fifteen year-old daughter who just happens to have type 1 diabetes. I love Cath’s attitude and approach because raising her beautiful girl isn’t about diabetes. It’s about helping her daughter be the best person she can be. Diabetes or not, I think this is relevant to all of us. Thanks for writing, Cath.

One of the most amazing things about watching your child grow up is seeing them take on their own responsibilities and realising that, even without you, they will thrive. It’s no different when your child has type 1 diabetes.

For the past ten years, it’s been my job to look after my daughter; to keep her safe; to keep her alive. I’ve been the one testing, injecting, doing site changes, making adjustments and going to appointments. I’ve been the one checking the carb count in every piece of food that she eats. I’ve been the one nagging. I’ve been her carer – and it’s been the most important job that I have ever done. Sometimes, it’s extremely difficult to let go of that. It becomes our identifier. It’s who we are.

Cath and her daughter

But, I’m here to tell you that ‘letting go’ is so worth it, so rewarding and, ultimately, the best possible thing that you can do for your child.

Now, I’m not talking about handing everything over to them and walking away. That would be a disaster. What I’m talking about is slowly letting go of the control that we have, allowing them to make their own decisions and their own mistakes. Allowing them to learn how to look after themselves safely for the rest of their lives.

Let’s face it; as much as we joke about them having to build a granny flat for us when they move out, the reality is that they are likely to be living on their own at some stage. Possibly living with friends or a partner. And certainly – not with us. We want them to be confident and competent in their own care. We want them to know what to do in any given situation. And we want them to live happy lives.

Twelve months ago, we began consciously working on this transition time with our daughter. She was 14 years old and had just been selected to tour the United Kingdom and France with her school netball team. Even though she would have teachers with her for the tour, we wanted her to be confident enough to look after herself while she was away. I made sure that she knew that I was there for her if she needed me and, nervously, handed over the responsibility for testing, carb counting and bolusing her insulin. I did not ask. I did not nag. I cut back on the night time testing.

I admit to you all that, as we approached her quarterly visit to Diabetes Clinic, I feared that we would see the worst HbA1c ever. It was a tough lesson – but also one of the proudest moments of my life – when she presented her best result EVER. She had taken control. She had stepped up. She had set her own alarms to test during the night or she had asked me to check on her. She had worn her Dexcom CGM and taken great interest in the effect of different foods and activity on her blood glucose levels. Essentially, she was doing this on her own.

Cath’s daughter at Stonehenge

When September rolled around and we waved her and her school mates goodbye, we knew that she was going to be just fine. And, more importantly, SHE knew that she was going to be just fine. For almost three weeks, I did not know her levels – not one of them. I didn’t know what she ate or what activity she was dealing with. And, when we spoke via Skype, diabetes was not mentioned once. She told me about her adventures and the people that she had met. It was magical. A huge turning point.

Now, she is still driving her own diabetes management. Several weeks ago, she told me that she wanted a pump holiday. She asked me for guidance and I showed her what needed to be done. In the past, her “holidays” have barely lasted a week. Now, with her in the driver’s seat, she is entering week four on multiple daily injections and she is doing great. I don’t know what all her levels have been but she is happy with them and that’s all that matters. I see her testing. I see her injecting. I know that she is going to be just fine.

I know some remarkable and inspirational young people who just happen to live with diabetes – and I know that my daughter will be in good company in this community. She too will be an amazing young person – taking life by the horns and doing whatever she chooses. Diabetes is just a tiny part of the incredible woman that she is.

Catherine Forbes is a mother, advocate, volunteer and peer support mentor. You can follow her on Twitter here.

The C word

January 29, 2014 in Awareness, Diabetes, Eyes, Guilt, Wellbeing | 10 comments

‘I’ve been compliant,’ I said to my ophthalmologist with great pride. ‘Compliant’, I said again and smiled at him and waited for a pat on the back. It didn’t come. So I tried again, emphasising my point. ‘Four times a day; both drops in my eye. Just like you said. Didn’t miss a single drop. I was com-pli-ant.’

If there is a word that is evokes rage in me it is compliant. When used in terms of diabetes management, it makes me see red and start imagining the painful things I’ll do to the person using the word. Actually, it’s usually used with the prefix ‘non’ to give the word noncompliant which is even worse.

At the World Diabetes Congress last year, Twitter nearly broke thanks to a group of DOC renegades sitting in a lecture given by a doctor who insisted on using the term ‘noncompliant diabetics’ to illustrate the point that some of his patients were having difficulties following their diabetes treatment plans. There we were, non-compliant diabetics because we couldn’t keep our BGLs perfect and follow the rules and do the things we ‘should’ do and, you know, do it all with a smile. Bad, bad, BAD diabetics. This photo shows how happy I was:

So with this hatred of the word, why was I bandying it about in front of my ophthalmologist like there was no tomorrow? And saying it so proudly? And frequently?

The answer is quite simple. Following the treatment plan I’d been given after my cataract surgeries was easy. Two different eye drops; four times a day; for 4 weeks. Then it was over. It was something that, for me, was manageable. There was a point where it would stop and then I wouldn’t have to think about it again.

The complete opposite of living with diabetes where there is no end point and no time where a box can be ticked and it will all go away. It was so lovely to be able to do something that was predictable, easy, knowing that there would be a time when it didn’t have to happen again.

Understanding the relentlessness of diabetes management is difficult to communicate. I don’t really expect people to truly appreciate what it is that is so frustrating and annoying and challenging. But I do expect a little respect and a little acceptance when things are not going to plan. I also think that using judgemental words that suggest that there is a deliberate attempt to ‘break the rules’ is unfair and lacks any sort of comprehension about a condition that never goes away.

Perhaps my delight in announcing so loudly and proudly to my ophthalmologist about how clever and bright and shiny I’d been with my eye drops was because for once I felt like I was actually doing something right when it comes to my healthcare. Perhaps I needed recognition (probably more from myself than anyone else) that I could follow directions and get the desired results. Perhaps I just needed to believe that I was doing something that would result in predictability and a satisfactory outcome. Diabetes doesn’t ever provide any of those things. No matter how compliant you are.

Silence

January 28, 2014 in Awareness, DOC, Real life, Social media, Wellbeing | 2 comments

Trying to cut the chatter in our busy lives is near impossible. There are so few times that we are ‘off’ and for me there is a constant white noise keeping me company. There are very few moments in my day when I am not in some way having a conversation of some sort with someone – or multiple people. In a five minute period I could be speaking in person with someone (or some people) while answering phone calls, listening to voicemail messages, sending SMS messages, Skyping someone, sending photos via MMS, answering and sending Facebook messages.

And at the same time, it’s possible that I’m taking a photo of my coffee, updating my Facebook status (This coffee is awesome!) and sending a tweet or two (Great coffee from new café in Melbourne’s inner-North) all while adding the picture to Instagram.

There is no silence in there. No gaps.

This last week, I’ve taken a step away from some of the noise in an effort to try to find some calm. With my eyes still not one hundred per cent, simply grabbing my phone, swiping to awaken it and checking Facebook, Twitter, email, SMS messages etc. is not so simple anymore. Glasses need to be located and put on and then I can start. It’s not as instant anymore. And because of that, the habit is slowly, but surely changing.

It took the better part of the week to deprogram myself.

I’ve realised that this is something that needs to be done consciously. Yesterday, at lunch at an outdoor café with a large group of friends, I looked over to where our kids were sitting on the ground in the shade. There were about 12 of them, all gorgeous, fit, sun-kissed kids who are more than capable of holding a conversation. And they were sitting in a row, not conversing, not playing, not teasing and joking with each other. No. They were all looking at their own iDevice. Totally enthralled and engaged. Just not with each other.

As someone who is permanently attached to my iPhone (seriously, if I had to make the choice between life-saving-insulin-delivery device and I-can-connect-to-the-whole-wild-world-all-the-time device, it would be a difficult decision) I am certainly not saying that technology is the end of civilisation. I’m not demonising our connectedness and if the truth be told, being able to reach out and ‘see’ someone from the DOC at any time is incredibly reassuring to me.

But is it the end of the world if I don’t know that the New Yorker Facebook page has just updated its status with a new cartoon? (Probably not, but this one is hysterical!) And really, even though it can be incredibly frustrating if I can’t remember the name of an actor in an episode of Breaking Bad, it will not kill me if I don’t IMDB the answer straight away!

So – I’m trying something new (as promised earlier). I am going to try to detox the constant chatter from my life. It’s not about going cold turkey, deactivating my Facebook page and leaving the Twitter community. It’s about boundaries. It’s about giving attention to the people I am with at any given time. But more than that. It’s about giving myself time. And space. And silence. Because sometimes, the answers are found there.

Just after I wrote this piece, I read this Huffington Post blog. I totally get it!

Waiting rooms

January 16, 2014 in Uncategorized | 3 comments

It’s T minus 60 minutes. Cataract surgery number two is about to happen and you’d think that I’d be far more relaxed second time around. Not so much. In fact, this time I have the expectation of tomorrow morning’s reveal as an added pressure. Will the result be as good as the last one? And more pressingly, will the headache that I’ve had for pretty much the last four weeks be gone?

I’m in the swanky waiting room of the day surgery centre. If it wasn’t for the anxious looking people sitting around me I could be in the foyer of a hotel. Alas, instead of sidling up to the bar for a vodka, lime and soda, I’m waiting for my name to be called by a nurse.

The pre-surgery process is always the same: brief description if what will happen next; introduction to the nurse looking after me for the next couple of hours; hand over your private health insurance details; confirm there will be someone with me after the surgery.

And now we wait.

I can feel my breathing quickening. My palms are sweaty. I’m trying to not think about the incision that will be made in my eye to remove the cloudy, cataract-riddled lens. I’m cursing that in a fit of stupid bravado I asked my ophthalmologist for a detailed description if the surgery when I went in for a check up last week. I’m psyching myself up for the conversation with the anaesthetist ‘Yes, I DO, want a general. Yes, you can call me a princess.

And now, I’m sitting in my lovely theatre gear (trying not to expose my arse), with my lovely husband gently reassuring me. I look out the window and think that tomorrow I’ll be able to enjoy those colours in their full brightness and sharpness. That’s what I’m holding onto right now. The hope of tomorrow’s vision.

The things that connect us

January 13, 2014 in Diabetes, DOC, Social media | 10 comments

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

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

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

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

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

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

Weighty matters

January 10, 2014 in Advocacy, Awareness, Diabetes, Wellbeing | 3 comments

Yesterday as I skimmed a few news sites and social media sites, I came across endless diets, weight loss fads and a downright disturbing article about ‘bikini bridges’ which, it appears, is the latest in ‘thinspiration’ trends (we’ve moved on from the thigh gap, apparently). I caught up on a piece about ‘diabulemia’ and thought about how diabetes adds an extra degree of difficulty to all things – even eating disorders.

The relationship between weight, food and diabetes is so complex and confusing. We’re told to maintain our weight to remain healthy (or prevent developing type 2 diabetes in the first place); we’re told to manage our cholesterol for heart health; we’re told that certain foods are taboo; we’re told we need to eat at certain times to prevent lows; we’re told we should eat a lot of carbs/not too many carbs (depending on who you listen to today); we’re told to cut sugar (tweet below gives you some indication to how I feel about that one!) and we’re told that our waist circumference is yet another number to think about.

Quitting sugar (or anything else for that matter) will not cure type 1 diabetes.

Now take diabetes away and we’re told a heap of other things.

There are polls about who has the ‘hottest’ body as if it is something that can be measured, and there are ‘half their size’ magazines at the supermarket. Ads for The Biggest Loser are already on our screens. Faux-concern is directed towards celebs who seem to have lost too much weight. Between fat-shaming and skinny-shaming, it appears no one is safe.

We refer to women’s bodies as ‘hot’ as if they are pieces of meat to be graded. There is no consideration for whether they also happen to be intelligent, have a strong social conscience or are good at horticulture. Or knitting or whatever it is that they are good at. Because it doesn’t matter. As long as they look hot.

Women become known as specific body parts (except Elle Macpherson who is known as ‘The Body’ which means that no one cares what’s going on in her brain). Pippa Middleton isn’t known for being Pippa Middleton. She’s known because her arse looked ‘hot’ in a white dress.

Apparently having a certain body shape makes a woman ‘authentic’. Curves, allegedly make a woman ‘real’, whereas being skinny somehow, miraculously, makes her less real. Believe me, as someone who has at times had some decent curves to hold on to and then at other times can see bones protruding, I’ve always been real.

I don’t think much about my weight. It’s never been an issue for me and I’ve never been on a diet. During periods where I’ve tried to eat better, the focus has been health, not weight loss. Also, I love Nutella too much to even contemplate cutting processed foods out of my life. Also, bacon. And cupcakes.

And yet.

Daily, I find myself struggling with how I feel about the dozens and dozens of images that I see. I’m confused at how I should feel about my own body. Today, I look in the mirror and see that I am probably the thinnest I’ve been in some time, meaning I’m closer to the ‘body ideal’ that the fad diets promise. And yet, I look at my collarbones – all sharp angles – and feel slightly ill.

Where in there is the message that to be happy with ourselves we need to – well, be happy with ourselves? Where are the messages of celebrating who we are for more than how we look in a pair of skinny jeans? In fact, can we stop referring to jeans as skinny, please?

The discussion needs to shift. We need to stop talking about weight loss and ways to look ‘hot’. No one can achieve the things being promised. In fact we’re all destined to fail. But health? Health is something we can all work towards achieving. And if each step is measured by our wellbeing – not the size of our thighs – we’re working towards something worthwhile and meaningful. Feeling better inside. And my guess is that will have far longer-reaching consequences than detoxing for a few days.