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This is an edited reblog (with a few new bits!) of a post from the old, now defunct, WordPress version of the Diabetes Victoria blog. I may live with diabetes and diabetes may live inside me. But I don’t do diabetes alone and I have always been emphatic about acknowledging the support I am fortunate to have. I couldn’t live with diabetes as well as I do without the people living in the village around me.
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I have type 1 diabetes… And the people I know with type 1 diabetes – in fact, all types of diabetes – who appear to manage best, do so with the support of many people, a veritable village made up of loved ones, friends, colleagues, extended families, health professionals. And the odd village idiot.
I have type 1 diabetes. Although my husband doesn’t, he knows a terrible lot about it. I’ve never seen anyone fly across a room to grab a jar of jelly beans the way he does when he sees that glazed look come over me. Or when I start to giggle uncontrollably for no apparent reason. Or when I begin to tear up for no apparent reason. Or when I start to act irrationally (he would perhaps suggest more irrationally) for no apparent reason. Aaron not only identifies when I am hypo before my meter has told me, he can also interpret my different hypo personalities, of which there are many. This, quite frankly, makes him brilliant. But the most wonderful thing Aaron does for me and my diabetes is that he recognises how crap it is sometimes. I love how he has learnt that trying to ‘fix’ a diabetes situation isn’t what I need; instead a nod of his head, a hug and the words ‘Diabetes sucks’ will more than suffice.
I have type 1 diabetes. Although my daughter may not, she understands just how it impacts on me. From when she was tiny to now, she has come to know that diabetes does impact on me at times and that will affect her. But she has never complained. Her advocacy efforts make me proud and pain me in equal measure, because diabetes has become her cause in may ways when I really wish it hadn’t.
I have type 1 diabetes. Although my endocrinologist may not, she has an uncanny ability to pinpoint the exact information I am looking for (often before I’ve asked). She knows about the dark side of diabetes and offers help working through it. And she listens, listens, listens.
I have type 1 diabetes. Although most of my friends don’t, (even though I seem to have a statistically significant number of friends with diabetes), they know that diabetes sometimes really pisses me off and that the way to offer help is not with unsolicited advice. However an offer to meet me for coffee, prosecco or chat or walk where I can vent about diabetes – or ignore it – will always be met with gratitude. And those friends who do share my pancreatically-challenged existence offer support, humour, understanding – often without words.
I have type 1 diabetes and my parents don’t. My mother also lives with a life-long condition and although it’s different to mine, we have an unspoken understanding of the boredom and sheer frustration of such an imposition in our lives. And when she sees that I am going through a difficult period, she helps – but never, ever makes it about her. I was diagnosed as an adult, so my parents were never responsible for making diabetes decisions for me. But I know that they walk alongside me, keenly feeling my frustrations and anger, as well as the moments I celebrate. I’ve come to learn that’s what parents do for their kids – even when their kids are in their 40s.
It takes a village to raise a child and it takes a village to deal with diabetes. When we try to do it all on our own, it can be overwhelming. My village supports me, assists me, and reminds me that they are there to help. Not only in the times things are becoming too hard, but also in the times when everything is going well. They are part of the reason that the good times happen. They didn’t choose to live in this village and they could have moved anytime they wanted. But they haven’t. I don’t think they will never know how grateful I am to them, but I will try to tell them and explain how important they are.
Of course, the village idiots will always feature – those who think they found a cure in herbs they picked up in their recent travels. Or those who think that the best way to deal with me having diabetes is to pity me. But the village idiots can be a source of humour too, (see here). And laughing is important, so in their own little way, the village idiot is helping and I say thanks to them, too!
It’s International No Diet Day! No Diet Day promotes and celebrates natural beauty and diversity. People are found in all shapes and sizes and there is no one ideal. It also encourages people to stop dieting for the day and put aside all weight loss plans or food restriction practices and put an end to weight discrimination.
There are lots of ways that we can celebrate No Diet Day. But for me and my family, it will be just another day of eating the way we always do – mostly fresh food, lots of coffee (for the grownups, not the kidlet!) and, in all likelihood, something with some Nutella spread over it at some point of the day.
And I will also be thinking a lot about diabetes-related eating disorders and how common they are amongst people living with diabetes.
I applaud these sorts of awareness campaigns, but the danger is that in the positive messaging, there is still a risk of shaming. No Diet Day is not about shaming people who are thin. When reading up about No Diet Day, I came across a lot of materials that were celebrating ‘real women’ and ‘real bodies’, claiming that real women have curves. This actually doesn’t advance the cause it all. All women are real women. Whatever shape or size you are, if you have a vagina, you’re a woman. Go get that on a t-shirt!
I guess the thing that we can all take away from today is remembering that diets don’t work. That’s the bottom line. Diets Do Not Work. So with that in mind, perhaps we should be aiming for every day to be No Diet Day. I know I certainly do.
In other news, jump over to the Diabetes Victoria blog where today I’ve written the second in a series about the consultation that is underway around the development of the new Australian National Diabetes Strategy. You still have 11 days to complete the online survey and I really urge you to take the time and provide some feedback.
Jump over to the Diabetes Victoria blog where today, I have written about how ‘Choosing Wisely Australia’ got diabetes wrong with its diabetes recommendation.
But while you’re here, check out these headlines from the Daily Express. So, so many ways to beat diabetes! Who knew?
Yesterday I spent the day with this guy:
And you can read all about it over at the Diabetes Australia – Vic blog.
So, so glad it’s Friday! Some Miles Davis was suggested. So here you go:Sketches of Spain.
There is a new film about to released about sugar, healthy food and confusing food messaging. I attended a preview screening brigh and early this morning and wrote about it for the Diabetes Australia – Vic blog. Have a read here!
On Saturday, we hosted our latest Type 1 in the City event which covered one of the almost-taboo topics of diabetes – complications. As a diabetes organisation, we seem to at times be scared of speaking about this issue and when we do it’s in hushed tones. Despite being one of the most requested topics on our event feedback forms, we’re reluctant to put it on our ever-growing calendar of events.
As a person living with diabetes, I don’t like talking complications. In a stupidly superstitious way, I feel that if I do I’ll make them come true. (Yep – me and logic. Best friends!) But after 15 years of living with diabetes, I am, for the first time, having to face complications head on. The cataracts that have been threatening to cause vision problems are now at the point where I can no longer ignore them. At my six-monthly ophthalmologist check-up last week, I decided it was time to bite the bullet and schedule the surgery to have them removed.
I’m not okay with this and it’s more than just being a complete and utter wuss when it comes to eye things. Although it’s likely that I was going to develop cataracts, my diabetes is probably the reason why they first appeared when I was 28 year old and that I will be having surgery for them at 40.
I believe that at Diabetes Australia – Vic (where I manage Community Programs) we have a responsibility to put discussions about diabetes-related complications on the table. We should be talking about them. As soon as a topic becomes taboo, there is shame and stigma associated with it. And that shouldn’t be the case. For many living with diabetes, complications are a reality. We should be providing not only information about how to reduce the risk of developing complications, but also information about continuing to live well if complications do eventuate. And we should be doing this in a safe way that doesn’t cause shame or feelings of failure.
Maybe we need to start to rethink the way we speak about complications. Time and time again we hear that if we ‘take care of ourselves’ we won’t get complications. But we know that is not the case. It suggests failure on our part if we do get complications. Sometimes people do their very best with what they have access to, and complications still happen. If we reframe the discussion and make sure we consider the role luck or genetics may play, will that mean that people are less inclined to ‘do the right things’ because they think the result is pre-determined? Or will people actually feel better knowing that, if they do develop complications, they feel confident they’ve done the best they can with the tools available to them and the capacity they have.
My dear friend who does live with some diabetes complications is my go-to person when I want to ask questions about living with such challenges. She has some really strong and valid views about how we should be discussing diabetes complications. She says, ‘Discussions about complications shouldn’t be used as a threat. We don’t need to be showing the horror stories, but we do need to have available real, factual information about complications for those who would like to find it.
‘Also we need to make people aware that complications are not the end of the world. There are lots of people walking around with complications, living their lives. I work with others with diabetes and I don’t want to be the constant, visual reminder of what ‘can happen’. But I hope that they see that even with complications life can go on.’
One of the things that my friend mentions is that at times she doesn’t feel connected to the diabetes blogs she reads.
‘Sometimes when I read blogs like yours I think that you are doing it easy. It seems like you are doing really well with it. I don’t mean that with any disrespect, but my experiences are really different to yours. I’ve never read any blogs about people with diabetes who have had the same experiences as me.’
So what do we need when we are talking to people who have complications?
‘We need peer support – whether in a group situation or one on one or on the phone or online. While having treatment for complications, I was not given any offer of support like this and I think perhaps it would have been good for me.’
I feel incredibly lucky to have this particular friend in my life. I know that she worries that hearing about her diabetes life may scare me, it does the exact opposite. I know diabetes complications may occur – they were shown to me in all their gory detail the very day I was told I had type 1 diabetes and I was terrified. But speaking to her, watching her live a rich, full life (despite being a Collingwood supporter) doesn’t terrify me. It reassures me. It helps me understand that if complications are part of my diabetes future, they don’t signal the end. And that has given me hope. She’s pretty damn amazing!
Diabetogenic 