Diabetes Blog Week – Day 5 – Accomplishments

Editor’s Note: Today’s Diabetes Blog Week topic is Freaky Friday.
Thanks to Georgie for this hypothetical post.

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

In a Freaky Friday disease swap, I would hold my sister down and steal her coeliac disease, without a doubt.

Coeliac disease? “What about all the pasta and pastries you’ll be missing out on?” I hear you all say.

Bear with me.

Coeliac disease is all over my family. My sister, aunt, grandparents, uncle and many cousins all have coeliac. Needless to say, our family gatherings are always gluten free! I know coeliac disease – I don’t know what it’s like to have it, but I do know the food options, how it works and thanks to my family, I eat a fairly low gluten diet anyway.

I was so jealous of my sister, when I got diagnosed with diabetes, that she got the ‘other’ autoimmune condition. Although I can eat whatever I want (within reason) my disease is one that can kill me immediately. One pump malfunction, kinked cannula or dose of Novo Rapid instead of Lantus and I’m in big trouble. My sister eats gluten and she’s on the toilet. Is it uncomfortable and painful? Absolutely. Does she have a risk of dying from a single ingestion of gluten? No – not at all.

Coeliac is an avoidance game. Avoid gluten, and you’re right as rain. People with coeliac disease don’t get told, “you just have to try HARDER, why can’t you control your bowel?” My sister knows what she can’t eat, and adjusts her diet accordingly. She doesn’t have to get approved to drive by her doctor every two years, plan her exercise ahead, inject herself and prick her fingers daily, be told by health professionals that she’s “lazy”. She doesn’t have to worry about going low while teaching a class, driving, or dancing on stage.

I really don’t want this to sound like I’m saying that coeliac disease isn’t a ‘hard’ disease to deal with. It is, choices of food are limited and it can be a huge pain! Diabetes and coeliac are both diseases that leave us susceptible to other ones, so in that respect having coeliac disease would be just as frustrating as having type 1 diabetes. However, I believe avoiding a food group would be a lot easier on my mental health than constantly counting, injecting and planning. It’s really hard having a disease that is so full-on, all of the time. I would love a break from diabetes; even a few hours would be nice. My mental health is more important to me than food choices, which is why I would swap with my sister in a heartbeat.

I don’t think I treat friends or acquaintances with a chronic illness any differently after discovering the DOC and having a chronic disease myself. I was never tactless or rude to people that were different to me – I’ve grown up around people with different illnesses -let’s be honest, in my family if you DON’T have a disease you’re the freaky one!

However I do know now exactly how other people with chronic illnesses feel, whereas before I could only imagine.  My chronic illness has brought my sister and me closer together but it still doesn’t mean I wouldn’t steal her coeliac disease if I were able to!

About Georgie Peters
I’m 21, studying a Bachelor of Arts at Monash University, majoring in all things language and planning to be a secondary teacher. I’m addicted to reality TV and sequins, and love travelling and any kind of dance. I also happen to be a type 1 diabetic. My diabetes doesn’t define me, but it is here to stay and sometimes I like to write about it on my blog, My Lazy Pancreas.

Opinions expressed by Georgie in this post are her own, and do not necessarily reflect the views of Diabetes Australia –Vic.

National Volunteer Week 2013

From the CEO

This week is: National Volunteer Week 2013.

During this week, the important role of volunteers in our community is being acknowledged and celebrated across Australia. It is estimated that each year approximately 6 million Australians undertake some type of volunteering activity, contributing about 730 million hours of unpaid work. However, the enormous contribution of volunteers cannot be adequately expressed in mere numbers. The act of giving; the commitment to a common (and typically worthwhile) cause; as well as the resulting sense of social inclusion are powerful means by which communities come together. We are all enriched by volunteering…

Diabetes Australia – Vic has been blessed with the support of many thousands of volunteers over the past 60 years.  Our volunteers currently help us with mail-outs, research studies, diabetes camps, clothing collections and a host of other support activities.  I’m advised that each year our several hundred volunteers contribute more than 10,400 hours of their own time to assist us with these tasks.

Last Tuesday, I had the pleasure of presenting certificates of appreciation to 16 of our volunteers at a special morning tea at our Campbellfield site.  Some of our volunteers have been assisting us for more than 10 years and one cheerful soul has an association with DA–Vic going back 55 years!  I was delighted to hear of the camaraderie and fun that these volunteers share whilst undertaking their various duties.

And…we are always on the lookout for more volunteers! If you would like to find out more about volunteering with DA–Vic, please either call: 1300 136 588, or click here.

On behalf of DA–Vic, thank you to our many volunteers, both past and present!  You are a much-valued part of the DA–Vic family.

Craig Bennett

Diabetes Blog Week – Day 4 – Accomplishments

Editor’s Note: Today’s Diabetes Blog Week topic is Accomplishments.
Today Megan shares her greatest accomplishment with diabetes management.

This year, I participated in my inaugural Murray to Moyne (M2M) cycle. My involvement started with meeting a bunch of what were mostly strangers. The known commonality was that being part of the HypoActive team, we all had type 1 diabetes.

Although I had a new road bike, I just had to buy a new hybrid bike, as my usual bike did not cut it as a road bike for the M2M and I was amongst some seasoned and fast riders.

The cycling day began at 9am, Saturday 6 April in Echuca. Here we rode in groups for about an hour then resting for a couple while other riders took their turn in the relay. I had the full package for my diabetes, attached to my insulin pump, a continuous glucose monitor to track where my blood glucose (BG) was at, with every minute of my ride closely monitored. Throughout my ride my meter was automatically sending the BG reading to my pump, meaning one less number to enter and potentially muck-up.

Thankfully with the ability to drop my basal rate to half quantity for several hours during the ride, I managed to keep my BG at a respectable level, without going screamingly or mildly low or high. I had my back up Abbott Optimum Exceed meter with its ketone strips but fortunately it was not required. I managed to keep my BGs between 4.4 and 10.5 the whole weekend, and in fact another rider jokingly commented, “oh, you’re just pretending to be a Type 1”. I surprised myself with such a good result, having no hypos during or even up to 72 hours afterwards, which I can and have done with exercise of shorter durations.

Completing the M2M was such an achievement, as it is total weekend of cycling covering around 520kms. This distance is covered in relay teams where the main aim is to complete the distance in 24hours. My team, the HypoActive cyclers managed to achieve this in 19hours.

You could say it was my first endurance event I’ve done but after being forced off both feet for medically necessary surgery in September 2012, I would say – this isn’t necessarily true! While I’m still not up to my fast-paced long walks, after my surgery I was keen to get back to exercising, particularly cycling, as I enjoy it and it was the only viable exercise I could think of.

It was after this happened that I decided I wanted to qualify for and sign-up to do the 2013 M2M. I had a clear goal to be cycling ready by April 2013.

On the first day of the M2M, my team and I were fortunate and cycled in glorious April weather. The sun was shining, a clear blue sky dawned and we felt a light breeze as we pedalled through the fairly flat terrain of country Victoria. We could not have asked for or predicted better weather. We cycled into our sleeping shed at midnight and after setting up my sleeping mat and bag I fell quickly into slumber.

Riding again at 7am on Sunday the weather was just as good as Saturday. The whole riding team cycled, along with its driving support crew for the final 25kms, riding triumphantly into Port Fairy.

The other great thing about the M2M event is that its purpose is to raise money for charity. I would like to give thanks to the many individuals who gave to me and the DA-Vic teams involved so the camps and programmes for children and adolescents with type 1 diabetes continue.

Ultimately the M2M was a win-win situation, for me personally and the fundraising goal and I’m already looking forward to participating in the 2014 HypoActive M2M cycle.

Diabetes Blog Week – Day 3 – Memories

Editor’s Note: Today’s Diabetes Blog Week topic is Memories.
Today Matt shares some special memories with us.

When being asked to share my most memorable diabetes day, I struggled to limited to one, so I decided to choose three. Diabetes brings many memories. The good, bad and ugly. But memories also remind us of how life is improving for people with diabetes. I still remember blood glucose monitors that felt like they wanted six litres of blood, and still remember the tediousness of mixing insulin in syringes that always led to an air bubble. Time for reflection is important because it reminds us of where we have come from.

1. Diagnosis – 3 November 1997

I’m sure everyone remembers their diagnosis. My story is like many others – diagnosed at age 11 in 1997 after a week with the usual, exhausting symptoms. A diabetes diagnosis is without question, life changing. If it didn’t happen I wouldn’t be writing this post and I wouldn’t be a diabetes blogger. But I also wouldn’t be the person I am today. Am I glad it happened? Of course not. But I am able to look back on diagnosis day as a memorable one.

A quick visit with dad to the family GP led to me (nearly) passing out in the waiting room. The doctor had one look at me and was already 99.9% certain it was type 1 diabetes, which was confirmed with a blood test well over 35.0. No wonder I was thirsty. We had no family history of diabetes and I think my initial reaction was to ask the doc how long it would last –ha! The next thing I remember, besides a brief moment in the hospital intake where I drank about 17 jugs of water was waking up slightly dazed in a vividly bright hospital room with Nan sitting next to me with a caring smile, with other family nearby reading through pamphlets about type 1 diabetes and what it meant.

I was in hospital for a week, which included my dad’s birthday, a Melbourne Cup (won by the great Might and Power) and my cousins needing some ‘fresh air’ after seeing me do a blood test. I don’t remember my first needle or my first hypo, but the main thing I remember is my family and friends gathering around me, and sneaking down to the hospital car park to see my Fox Terrier –thanks mum!

2. Getting my insulin pump – 30 April 2012

I chose this day because it has changed my outlook and day-to-day experience with diabetes. It took me some time to get my insulin pump but I will forever remember the little room where I got my pump and pump training, and the slight awkwardness of wearing the pump that lasted a day or two before it became the norm. The day felt like a long time coming – paperwork, appointments and more paperwork – and then felt like a diabetes version of Christmas. It was a bit like taking my car out for a drive on my own when I first got my driver’s license. Just like I had driven for a while and comfortable with the feeling of being on the road, I’d lived with diabetes for a while, but having my pump was a new spin on it that provided a sense of freedom and excitement.

My decision to get a pump was largely informed by reading through blogs, forums and tweets that gave me a sense of how people out there in the world are living with insulin pumps on a day-to-day basis. There is nothing quite like a first-hand review, particularly when you are talking about a device you become very attached to (pardon the pun) over the years.

Insulin pumps aren’t for everyone, but it is definitely for me. I still have hypos, I still have unexplained high readings, but I now feel like I am making diabetes suit my lifestyle, rather than the other way around.

3. Blog Start – 17 November 2012

This day was when I started my diabetes blog. It was a long time in the making because for at least 10 or so years, I rarely talked about my diabetes with anyone and probably even shelved diabetes when I didn’t want to think or talk about it. What changed? I found other people with stories to tell about their diabetes, and stories that I could relate to.

Eventually, I wanted to join in, and here I am, contributing to the fourth Diabetes Blog week! I hit publish for the first time with a sense of trepidation, but it has gradually become more comfortable. I don’t pressure myself to post if I don’t feel like it, and I don’t even bother looking at the stats. That is not why I blog. For me it is more about reading what other people write, finding familiarity with their stories, putting the thoughts in my head down on paper and contributing to what is a growing online community in Australia and worldwide.

So if you are reading this post and considering starting a blog, I say go for it. You may even be up and running for the fifth Diabetes Blog Week.

Matt Cameron has lived with type 1 diabetes since 1997 and recently started his blog, Insulin Pumps Need Tetris. Matt is a member of the Type 1 Diabetes Network management committee and you can also follow him on Twitter @MattyCameron. The opinions and thoughts expressed in this post are Matt’s own.

Diabetes Blog Week – Day 2 – We, the undersigned

Editor’s Note: Today’s Diabetes Blog Week topic is We, the undersigned.
Today Renza writes a petition for a change she wants to see.

We, the undersigned – consult, consult, consult!

After the National Transport Commission (NTC) released its new Fitness to Drive Guidelines in March 2012, people with diabetes started to feel the effects of the changes to the relevant diabetes section. Suddenly, there was an arbitrary number that defined ‘satisfactory control of diabetes’ and this resulted in people losing their licence.

Earlier this year, the guidelines were amended with the hope that new wording would clarify the relevant sections. Have they gone far enough? No. I believe there is still far too much room for misinterpretation of the guidelines which means people with diabetes will continue to be disadvantaged.

For me as a person living with diabetes and someone who has had some insight into the process of the guidelines development, the thing that stands out the most is the complete and utter lack of consultation with the people who will be most affected by the guidelines. This is not unique to the NTC. We see that people with diabetes are rarely consulted when it comes to the development of guidelines or process and procedures that may directly affect them.

So this petition is aimed at every single organisation that is responsible for developing guidelines that have anything to do with people with diabetes (and you know what, let’s add every single other chronic condition to that).

We, the undersigned, are asking (insert organisation name) to remember that when you are putting together anything to do with people with diabetes (feel free to substitute with any other condition) that you start at the end. By that, we mean that you should begin my consulting the end user – us!

If you are developing guidelines about diabetes in schools, talk with some parents, kids and teachers; if you are developing best practice guidelines for diabetes in any setting, talk to people with diabetes who use that service. If you are putting together some tips and ideas about how people with diabetes can better deal with certain situations, ask the people most likely to be affected by that situation.

And then, when you have developed whatever it is you are developing, finish by asking the end user one last time to make sure that what you have is realistic, appropriate, understandable and achievable.

And finally, remember that guidelines are just that – a guide. They will not work for every person. There is no one size fits all when it comes to diabetes, so ensure that there is flexibility in what you are putting together.

Thank you!

Renza Scibilia is the Manager of Type 1 Diabetes and Community Programs at DA–Vic. She has lived with type 1 diabetes since 1998. The opinions and thoughts expressed in her occasional blogs are her own.

Renza blogs regularly at Diabetogenic about real life with type 1 diabetes and you can also follow her on Twitter @RenzaS

Diabetes Blog Week – Day 1 – Share or don’t share?

Editor’s Note: Started by Karen of Bitter~Sweet and now in its 4th year, the idea of Diabetes Blog Week is that bloggers sign up to post about a set topic each day for a week. This is our first time participating in Diabetes Blog Week, and we’ve lined up an amazing cast of bloggers to ensure we get something new to you every day this week! Thanks to Ashley for going first.

Welcome to the fourth annual Diabetes Blog Week!

The first topic for the week is to write as if my diabetes healthcare team is reading and what I would or wouldn’t share with them.

My first thought is to freak out and not write anything at all!

This is due to my fear of judgement if I’m not doing something right; fear of upsetting them if I wrote something bad about them or if I wrote something I wasn’t happy about (regarding my management) or fear of them using something I wrote against me.

I could probably carry on with a long list of things I am paranoid about if they were to read my blog. However, I haven’t let that stop me from sharing my experiences of life with diabetes. I consider myself to be fairly selective in what I choose to share online. And my rule of thumb is: if it’s information I won’t share with the interwebz it certainly won’t be information I will be willing to share with my healthcare team. Unless, of course, I think it’s medically important but too private or personal to share with the online community.

As we all know too well, there are always two sides to any story. Part of living with a chronic condition involves an array of medical appointments and lot of talking with health professionals. It’s all too easy to get caught up with the medical side of things and lose sight of living life itself. Diabetes isn’t the end of the world. Personally, I love reading about other’s experiences about life with diabetes. What they have succeeded in, what they have learned from their stumbles and how they cope with everything. I take comfort in knowing that sometimes I’m not the only who is in struggletown and that it is okay to ask for help. After all, support is what the diabetes online community is all about

There’s only so much support healthcare professionals are able to provide. It’s good to be reminded that there is more to diabetes than just numbers. And I think it’s beneficial for health professionals to be reminded of that from time to time too. Understandably, their job is about keeping us out of the red zones but wouldn’t it be nice if they knew what else there is to us apart from diabetes? The limited time they have with us in clinics also makes it hard for them to understand the delicate balancing act between diabetes and life that we go through on a daily basis. In that sense, I would be more than happy for my healthcare team to read my blog; to share in my triumphs and frustrations of living life with diabetes.

If I do write about my healthcare team, I make sure that no names are mentioned to keep their anonymity. Even if they did do something bad by me, they are still entitled to their privacy, just like I expect them to respect my privacy. Plus no one wants to get sued for defamation. I would also weigh up why I am even writing about a negative experience with a healthcare professional in the first place. Is there something to be learnt from the experience that I could take away from it and share or am I simply being petty and unreasonable?

At the end of the day common sense should prevail when it comes to what you publish online. Simply because once it’s out on the interwebz, you can’t take it back.

Ashley Ng, of Caufield, is 23 years young. Ashley was diagnosed with type 2 (MODY) diabetes in 2009, and blogs more regularly at Bittersweet Diagnosis.

The opinions and thoughts expressed in Ashley’s occasional blogs are her own.

Reg Monash is ‘living well’ – are you?

A past Living Well with Diabetes event

Few people embody the concept of living well better than Reginald Monash.

An ex-electrical engineer from Melbourne, he has been a member of Diabetes Australia – Vic for 14 years and prides himself as an acting DA–Vic champion, an initiative recognising the work of individuals in the community.

Reginald Monash, known to friends as Reg, was diagnosed with type 2 diabetes when he was 58 and living in Adelaide. Reg spoke to us about living with diabetes for 25 years and why he believes regular diabetes education is important.

Reg says after he returned to Melbourne to ‘re-set’ his diabetes management, he soon ran into a number of complications relating to his diabetes.

“My current HbA1c is 7.1 – which my diabetes health professionals agree is a good level – however, over the years I have had open-heart double bypass surgery and multiple toe amputations. I never know what is around the corner, so I think it is vital to keep up to date with my diabetes education and see my specialists regularly,” Reg says.

Travis McAuley, a DA–Vic Food Ambassador and Head Chef of Hellenic Republic at Living Well with Diabetes

Determined to stay healthy, Reg attended the Living Well with Diabetes event at Moonee Valley Racecourse in February. Along with more than 400 other DA–Vic members, the event featured a presentation from an expert dietitian – who spoke on diabetes and nutrition – and a live cooking demonstration from Travis McAuley, a DA–Vic Food Ambassador and Head Chef of Hellenic Republic.

The day aimed to help people living with type 2 diabetes to find out more about developing and maintaining healthy habits, and provided attendees the chance to ask questions.
As a DA–Vic champion and support group advocate, Reg was blown away by the enthusiasm of attendees.

“Although I found some attendees had a very basic level of diabetes management knowledge, they were very keen to improve their understanding and their overall diabetes management skills. It was a great opportunity for me to meet others with type 2 diabetes and I picked up lots of free information. The cooking demonstration was excellent, and it was great to see food being cooked on stage and then try to replicate the recipes at home.

A sample of the dishes prepared by Travis McAuley, a DA–Vic Food Ambassador and Head Chef of Hellenic Republic at Living Well with Diabetes

“I am now 82 years ‘young’ and continue to lead a busy lifestyle. After managing my diabetes for 25 years I still see the importance of coming along to such events,” Reg says.

The next Living Well with Diabetes event is on Saturday 18 May 2013 at Monash University, Clayton from 9.30am. This event will feature a live cooking demonstration and interactive information sessions about diabetes and healthy living. Come along and meet the DA–Vic team, ask your questions and find out about the support services in your area. Bookings can be made by calling 1300 136 588 or 03 9667 1790.