More United Than Ever

It was Aesop who first said ‘United we stand, divided we fall’. Since then, the phrase has been used in popular culture – from British pop group The Brotherhood of Man to author JK Rowling who, in Harry Potter and Goblet of Fire, wrote: “We are only as strong as we are united, as weak as we are divided.”
Last week, it was announced that the diabetes organisations of NSW and ACT have now been appointed as member organisation of Diabetes Australia. This unification strengthens Diabetes Australia as the voice of people affected by diabetes.
Long-time diabetes advocate and President of Diabetes Australia, Hon Judi Moylan said “The division of the past few years has not helped our cause – but now we will be more united for diabetes and working strongly together.”
As a person working for the Victoria diabetes organisation I am pleased that we have the opportunity to work closely and share the work we are doing with our counterparts in QLD, WA, TAS, NSW and ACT. There is much great work coming from all member-based organisations and having a network to collaborate, innovate and work closely with the diabetes community in each state will mean we are providing better services to people living with diabetes.
And as a person who also has responsibilities as a National Program Leader for Youth and Type 1 Diabetes, I can see how we will have the potential to reach more people. Programs such as the Diabetes Australia Young Leaders in Diabetes Program already show how inclusive and comprehensive we can be. Each state in Australia is represented allowing for a truly national program.
But mostly, it is as a person with diabetes that I am pleased that our national peak body now has greater reach, greater strength and greater potential to speak directly to and for people with ALL types of diabetes. I hope that the member organisations in SA and NT will follow suit to ensure people throughout all of Australia are represented by the voice of Diabetes Australia. In the case of type 1 diabetes, where there are only 120,000 of us across the country, it is important that we can come together and be heard as loudly and proudly as possible.

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‘RU OK?’ is much more than one day

Back in September I wrote about diabetes and depression, particularly the importance of checking in with loved ones as often as possible. Initiatives like R U OK Day are fantastic, however it is important to remember that for some people, every day is a struggle.
It’s hard to tell how someone is feeling all the time. I remind myself regularly that even if someone appears to be OK on the outside, they may be battling with personal issues that they have not been able to express. Yes, I may not be an expert, but I’m human!

Research has shown that talking to someone and asking how they are can increase positivity, make sense of internal thought processes and relieve a sense of loneliness. At Diabetes Australia – Vic, we aim to work closely with our members, those newly diagnosed and the families/carers of people living with diabetes to provide the support and information they need to make sure they are OK.

You can:

Call us on the Diabetes Infoline (1300 136 588) to talk to a team of dedicated experts who can point you in the right direction – whether it’s locating a health professional, speaking to an expert over the phone or finding the right book, we can help!
Visit the Diabetes Online Counselling website, that offers personalised and professional online service through e-counselling, group counselling and support in regular chat session and discussion forums.
Grab one of our resources. There are a number of resources developed by experts available on our website, not only on diabetes and wellbeing but on most topics relating to your diabetes management.
Get involved with the ACBRD. The Australian Centre for Behavioural Research in Diabetes is the first national research centre in Australia and internationally, dedicated to investigating the behavioural, psychological and social aspects of diabetes. They are often looking for participants to take part in their research projects.
Join a support group – there are over 80 support groups in Victoria, find out where your nearest one is on our website and get down to the next meeting. They are a great way to meet others living with diabetes and discussing how you manage your diabetes.

It is estimated that we speak on average over 20,000 words every day, so don’t forget about those three simple ones… “How are you?” You never know what a difference it could make!

Michael GoldmanMichael Goldman is Director of Membership & Fundraising at Diabetes Australia – Vic. You can follow him on Twitter @MGoldman_ the thoughts and opinions expressed in this blog are his own

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Our culture shapes us

Victoria is the most culturally and linguistically diverse state in Australia. Nearly half of all Victorians were born overseas or have at least one parent who was born overseas. Residents of Victoria come from over 200 countries, speak 260 languages and dialects and follow 135 religious faiths.

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CALD morning tea

Diabetes Australia – Vic staff share their favourite foods that represent their cultural background at morning tea.

Culture plays an important role in the way we perceive health, the way we understand illness and the actions we take to protect our health.

Running from March 15–23, Cultural Diversity Week is an opportunity for all of us to reflect upon, embrace and celebrate our own individual cultural diversity and the diversity of the Victorian community.

People from culturally and linguistically diverse backgrounds are twice as likely to live with diabetes, and Aboriginal and Torres Strait Islander people are 3–4 times more likely to live with diabetes. These statistics reinforce the work that Diabetes Australia – Vic does by representing, connecting and informing all people living with all types of diabetes to reduce the impact of diabetes in the community.

IMG_4497A Diabetes Australia – Vic staff member wears a customary Javanese outfit.

IMG_4486The mapping of Diabetes Australia – Vic staff members’ cultural backgrounds! Red represents where a staff member was born and green represents the other areas they have lived in.

Did you know?

Diabetes Australia – Vic’s Cultural Diversity and Aboriginal and Torres Strait Islander program works towards reducing the diabetes-related health inequalities experienced by these communities by providing a variety of resources that you can access:
•    diabetes awareness sessions, presented by bilingual health facilitators in nine community languages
•    translated fact sheets, DVDs, booklets and pictorial guides that explain ways to prevent and manage diabetes
•    multilingual infoline on 1300 801 164 provides diabetes-related information in over 170 languages.

For more information on our resources, visit our website

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I’m still here because of a stranger’s decision to #havethechat

I am an organ donor recipient. It still seems odd to say (or write) that. It is not a description that you ever imagine will apply to you. I had many visions of how I imagined my life would look as I got older; none included having diabetes, living on dialysis or becoming an organ recipient. I feel like quoting Forrest Gump at this point, but I will refrain.

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It is only now that I sit down to reflect and write this blog, that I realise that I am about to unleash every cliché known to man in order to describe my feelings in relation to organ donation – because I’ve found there are no other ways to describe some of these feelings.

I am alive and well today due to the generosity of a family who I will never know and will never meet. Maybe I will pass one of them on the street one day but I’ll never know and nor will they. What little I know about my donor, I keep to myself – as I am well aware of another old cliché, ‘six degrees of Kevin Bacon’.

Just over five years ago, I received a kidney and pancreas from a deceased donor. One selfless decision by a group of people I will never meet changed my life. (Well, along with the incredible doctors, nurses and surgeons in the Transplant Department at Monash Medical Centre in Melbourne).

After 30 plus years of type 1 diabetes, most of the text-book diabetes complications, 20 years of kidney disease, two years of dialysis…I was finally granted a transplant! It was then that I was given a whole lot of my life back.

It is still odd when people ask me if I still have diabetes post-transplant. I always pause which makes them think that I’m an idiot; ‘it’s a yes or no question surely?’ But it’s not for me. No, I no longer have type 1 diabetes but perhaps one day I will again. Perhaps one day I will be diagnosed with type 2 (oh the irony …) But now, and for the past five years, no, I have not had diabetes.

For those of you who do have diabetes, you may be thinking ‘oh that’s like a cure. That must be fantastic’. Yes, it is fantastic, but the long road to my transplant was not something I would wish on anybody. Life post-transplant is not easy either; it is just a new set of ‘challenges’. And as I always say, for me “diabetes is the gift that keeps on giving”. I no longer diagnostically have diabetes but the complications and psychological impact of living with type 1 for most of my life, still live on. To me, I will always be a person living with diabetes.

I know people hear the words ‘gift of life’ often.  It is only when this has actually happened to you, that you realise that there is no other way to describe the acceptance of someone else’s functioning organs. My transplant changed my life in ways that I will never be able to adequately articulate.

logoI am writing about my story during DonateLife Week to encourage people to #Havethechat. A lot of my friends say ‘I’m registered as an organ donor’. That’s great, but it’s not enough. Legally, your registration is enough to enable your organs to be used if you pass away in the right circumstances (less than one per cent of people will die in hospital in the specific circumstances where organ donation is possible). Even so, your family will still be asked to give their consent. If this is a discussion you have never had, this must be an impossibly difficult decision to make at such a traumatic time. If however you have had this discussion with your family, the decision can be made automatically based on their absolute certainty of what your wishes were on the subject.

I am hoping that perhaps just by reading my story, it may enable you to have this conversation with your family. Just saying, “I read a blog today about a girl who had diabetes and then had a kidney/pancreas transplant …..” might just open the door to that conversation for you.

The DonateLife website will answer any questions you may have to allow you and your family to make an informed decision.

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My friends and family are always keen to celebrate the anniversary of my transplant but I find it a very confronting day each year. I am very cognisant of the fact that, as I sit and celebrate each year of my new life, a family is sitting somewhere commemorating the day that they lost their loved one. I hope they know that I am forever grateful and think of them daily as I try to do my best for myself and my donor.

I used to be just like you and only vaguely considered organ donation as a concept because I had never known anyone who had actually had an organ transplant. I now sit in a clinic every eight weeks surrounded by dozens of other people of all ages, races and circumstances and realise that I am amongst many whose lives have been saved or changed due to the ultimate gift of generosity by an unknown family.

Please think about your wishes in relation to organ donation this week. I am very happy to be the introduction you need to have the chat.

The writer of this blog is a Melbourne woman who wishes to remain anonymous.

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Celebrating our partnership with the Melbourne Food and Wine Festival!

I must apologise – we’re midway through February and this is my first blog post of 2014! January has been a hectic month – amid the 40 degree heat wave, the Australian Open and Australia Day celebrations, I’ve been consumed with working at the Diabetes Australia – Vic offices.

Continuing the excitement of 2013, our 60th anniversary year, we have started 2014 on an energetic high – and we are busier than ever.

Enthusiasm in our offices is growing as we near the launch of Melbourne Food and Wine Festival 2014. This annual event usually serves to revive my faith in Melbourne’s culture as it showcases the best culinary delights on offer from across the state.

Besides the delicious food on offer, the 2014 festival is particularly exciting for me as this is the first year that festival organisers have partnered with a health promotion brand. That Diabetes Australia – Vic was selected to fill this role is an achievement I’m very proud of.

You may ask, why are we so invested in this particular festival?

Firstly, this will be a great opportunity for us to share simple tips about healthy living. Yes, eating and drinking is fun; everyone likes trying new things and I can’t wait to experience the cuisine. But, healthy eating and drinking does not mean it is boring. The current food craze that has encompassed Melbourne, with restaurants, cafés and bars popping up on every street corner, has enhanced our indulgent lifestyle. Diabetes Australia – Vic’s involvement with Melbourne Food and Wine Festival aims to promote the healthier aspects of dining out and being aware of basic principles such as portion sizes, healthy alternatives and the importance of physical activity.

Secondly, and most importantly, we are focused on raising awareness of diabetes and of Diabetes Australia – Vic, as the leading charity working to reduce the impact of diabetes in the community. We are thrilled to be able to leverage the power of the Festival’s brand to achieve this goal.

How can you get involved?

Every morning from 28 February – 4 March, you can kick start your day with free early morning yoga or tai chi classes at Queensbridge Square in Southbank. Pop down to speak to one of our friendly nutritionists about your health and wellbeing and grab some delicious healthy recipes created exclusively by some of Melbourne’s high profile chefs. There’s also a fantastic competition to win a pair of Skechers trainers or a Cotton On Body prize pack!

Visit our website www.diabetesvic.org.au for more information about the event.

Michael Michael GoldmanGoldman is General Manager – Commercial Partnerships Diabetes Australia – Vic. You can follow him on Twitter @MGoldman_ the thoughts and opinions expressed in this blog are his own.

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Wise words from diabetes kids campers

This month, children and teens from all over Victoria came together to participate in the junior camp (10–11 years) in Anglesea and the teenage camp (15 –17 years) in Somers.

Camper photo 2Each year Diabetes Camps Victoria facilitates seven camps for over 250 children, with the goal to teach young people how to manage their diabetes in a fun, safe and supportive environment, and how to promote a culture of independence through adventure.

We asked some of the children to offer advice to others their age living with diabetes and here’s what they had to say.

Alarna Barling (2)Learning how to self-manage
“I thought I knew most of the pump’s functions after wearing one for four-and-a-half years but on camp I found out how to work out my own basal rates, carb ratios and sensitivity ratings throughout the day,” Ashleigh, 15, Knoxfield

“Don’t let type 1 diabetes get you down; you’re just like everybody else, as long as you look after yourself by testing your levels and having your insulin, everything will be fine.” Emma, 10, Benalla

You’re not alone
“Camps are a really good idea, I met more than 50 people like me and I’m thinking diabetes is not so bad. I hate it but if the others can put up with it, so can I,” Alex, 14, EssendonCamper photo 1

“I learnt not to give up, even at the darkest of times because even if you don’t believe it, or see it, there are people who have not given up on you. There are people who are there to give every last bit of advice or help they can, just to make that little bit of difference to you – which is simply amazing.” Brii, 16, Langwarrin

“Know that you are not alone. There are hundreds if not thousands of other people out there just like you. Don’t worry about what other people think or say, you shouldn’t have to hide your injections or blood glucose level testing because it is part of who you are.” Cassie, 17, Kurunjang

Keeping positive
Lucas van Shaaik“Keep going no matter what. At times, it can be hard but it’s not the end of the world. At times, it may seem like that but you have to take it day-by-day and continue being yourself and not give up on what’s most important to you. As long as you keep looking after yourself you’ll get through it, but also remember to smile even when it’s hard.” Regan, 14, Bacchus Marsh

“You’re not the only one out there and it is important to talk about it. It’s tough but nothing can stop you from doing anything.” Charlotte, 11, Cardigan

“Don’t be afraid to do what you like, diabetes does not stop you from anything. If you love sports – do it! Want to travel? Do it! Go camping, hiking – do it! You just have to be a little bit more prepared and you can manage.” Thomas, 15, Wangaratta

To find out more about the Diabetes Camps Victoria program, head to the website, email or phone us on 9667 1746.

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Body image issues for people with diabetes can’t be ignored

For me, diabetes has not been the ‘empowering’ or ‘call to action’ incentive that you sometimes hear from bloggers in the online community. My diagnosis of type 1 diabetes only added to my body image issues and at times I felt like I hit the bottom. This is my story.

I have had issues with food and how my body looks from my earliest memory. I remember my first day of Prep – a girl called me fat, and I spent the time after lunch sitting on the carpet pinching my stomach rolls, before announcing to Mum that I needed to ‘lose weight’. From 11 until 16, I would throw up my meals at least once a day. The year that I was 15, I starved myself until I’d lost 15 kilograms and had to be put in hospital.

I was diagnosed with type 1 diabetes about a year after starting recovery from bulimia. Previous to the diagnosis, I had been losing weight – I thought it was due to my lack of binging and moving towards a healthier attitude to food, but really it was my insanely high blood sugars. When I was admitted to hospital, the diabetes educator assigned to help me out sat down with pages and pages of nutritional information. “Right!” she said cheerily. “Today, we’re going to learn how to count carbs so you know how much insulin to take. Have you had experience with this sort of thing before?”

Only a little. I used to count carbs. Count calories. Count fat. Count how many bites of the apple I took before throwing it away and declaring I wasn’t hungry.

Type 1 diabetes is a serious and complex condition – which I think is an exceptionally hard condition to navigate when diagnosed as a young woman. Management of diabetes requires constant examination of your numbers. Your blood glucose levels, your HbA1c, your insulin to carb ratio, and your insulin sensitivity…the list could go on forever.  We are asked our weight and our exercise habits constantly, and have our diet examined in excruciating detail. We are told “You need to lose some weight, why are you eating white bread?” and “Weigh your food every time, it will give you a better indication” (yes, because weighing every single thing I eat is not obsessive at all…).

It is no wonder that an average person experiencing all of this for the first time can start to get a little hung up on their body and food choices. For someone like me, who already had huge body issues and a numerical attitude to food, my diagnosis was disastrous. Here I was given an excuse to obsessively count numbers, exercise, and refuse food, all because I was now a ‘person with diabetes’. Healthcare professionals didn’t tell me what I was doing was wrong; they praised me for ‘my excellent control’ and told me to keep doing what I’m doing. In any other scenario, my behaviour sets off huge alarm bells. When you have diabetes, this behavior is applauded and held up as an example by some in the medical community.

I later discovered that by restricting my insulin I could eat whatever I wanted and not put on any weight. What I didn’t particularly care about was the fact that I was slowly killing myself. I was living away from home in the UK at that time, and without a family who knew my background, my a1c rose to a very high number and I came home a month early with complications and in a terrible head space.

This condition is called diabulimia and affects many young people with type 1 diabetes around the world. It is incredibly dangerous, yet most people within the medical community have no idea what it is. We are told that we are being ‘naughty’ and ‘non-compliant’, told to “just take your insulin and stop being difficult!” A doctor who told an anorexic to “just eat and stop being difficult” when they went in to seek help would not last long. Why then are we ignored and made to feel like we’re not sick? When someone with an eating disorder seeks help, they need help, not shame.

In my experience, there is nothing in this country to help young people like me. Young women and men who attend medical appointments with perfect logbook numbers but an Hba1c of 11 are told, 90% of the time, to stop being ‘dishonest’. Even if the medical professional does realise what is going on, where do you refer us? The National Eating Disorders Collaboration doesn’t even recognise diabulimia – it cannot be classified under EDNOS (Eating Disorder Not Otherwise Specified). There are no support groups, or any national foundations in Australia that are focused enough on this issue. If a person with type 1 diabetes is restricting their insulin, but binging, purging, or sliding towards anorexia, our treatment is still different from others. We can’t ‘ignore numbers’ like everyone else, our food must be counted every day for the rest of our lives. How do you help us? We can’t just slip into a normal support group. For many, it’s a situation that has no answer.

This is why I want to start something like DWED (Diabetics with Eating Disorders) here in Australia. We need something concrete to help our healthcare system understand the challenges that come with treating eating disorders in people with diabetes. I want a patient to be able to walk into their GP, ask for help, and have a place or people for the GP to refer them too. I feel like my role as a Young Leader will put me in a position where I can make the connections and find the people who will be able to help me make this dream a reality. There are so many people like me out there in this country right now, and there is nowhere for us to go.

If you have diabetes and want to talk to someone about body image issues and eating disorders you can contact the Diabetes Australia – Vic Diabetes Infoline service at 1300 136 588 to speak with diabetes educators and dietitians who will direct you to local services. You can also read more about diabetes and eating disorders in the National Diabetes Services Scheme booklet or contact the The Eating Disorders Foundation of Victoria.

Georgina Peters picGeorgina Peters is a French major at Monash University and a Diabetes Australia Young Leader. She has lived with diabetes for three years and is active on social media, to advocate for changes in the treatment of young people with diabetes, body image and eating disorders. You can read more of Georgie’s views on her blog The Lazy Pancreas and on Twitter.

Posted in chronic disease, Diabetes, diabulimia, food, Health, Mental health, nutrition, type 1, weight loss, Young people | Tagged , , , | Leave a comment