real life with diabetes
The work year is coming to a close (yay!), and with only a couple of days left in the office and all my spare time stressing about my lack of Xmas prep, I am revisiting some old posts.
And because I am looking at ways to continue my procrastination, today, I’m looking back to December 2012 and a game involving the alphabet. Have fun!
Click on pic for link.
Eleven days out from Xmas and I have done hardly any gift shopping. I managed to get online and do a few things the other day, and then spent the rest of the week patting myself on the back and not doing anything more. So, as it stands there are two presents wrapped under our tree, two things in transit….and a list as long as my arm of gifts still to buy.
But! I have found something so special for any of you reading this. (To be honest, it was handed to me from a work colleague, so I can’t even take credit for being thoughtful and finding it myself.)
So, enjoy! Or don’t.
(To make up for that, listen to this.)
I tried to hide my diabetes from our kid for a long time. I didn’t want her involved in any way; I didn’t want her to know about it and I certainly didn’t want her to see it.
But as her inquisitive little mind grew and she started asking questions – lots and lots of questions – it became harder to hide things from home. I became an expert at deflecting. If she asked ‘What is it like to have diabetes?’ I would suggest we took a walk. When she asked if she would get diabetes, I would struggle to breathe and, instead of answering her question, would offer to read her a story.
The kidlet went to school the day before WDD this year with her hope in her heart and on her hand, set to do some awareness raising of her own.
These days, I try to shield her from the truly nasty sides of diabetes (even though my nasty is comparatively quite mild) and I certainly still hide from her any fears I have. But as an eleven year old, she has an extraordinarily sensitive understanding of diabetes and she has become quite the little advocate.
All of this was playing on my mind last week as I say down to hear a presentation from Kara Maliszewski whose mum has type 1 diabetes. In the abstract to her talk, Kara says her ‘normal’ was ‘…needles in the kitchen, candies and blood sugar monitoring equipment in the handbag, insulin in the refrigerator, pump infusions in the bathroom and the constant voice in my head “insulin to treat a high, sugar to treat a low”’.
Kara spoke about how from a very young age she was involved in her mum’s diabetes care. She was taught to give her mum a spoonful of jam or a glass of juice. I am not sure what Kara meant by ‘very young age’ but it did appear from her talk that Kara’s involvement was significant from when she was very small. I felt uncomfortable about this, thinking back to my own experience of trying to protect the kidlet from all things diabetes. It is only in the last year or two I have asked her to get me a juice box from the fridge if I am really low. Even though her understanding of diabetes is excellent, I have been resolute about not giving her a part in it. Why? Because I don’t want to concern her.
But Kara said several times that her contribution to her mum’s diabetes care actually lessened the fear rather than added to it. This was at odds to my thinking – I have had the idea that by not showing the kidlet the nasty things that she simply wouldn’t know they were even there – there would be nothing for her to be afraid about.
Clearly the effects of understanding and being part of her mother’s diabetes are significantly more far reaching than just knowing what to do in the case of low blood sugar. In fact, as this tweet from Kelly Close shows, Kara believes that her contribution to her mother’s diabetes care has impacted in other ways.
The kidlet’s thoughts at the #IWishPeopleKnewThat Diabetes stand at FFL this year.
I love this about her. Is it because she is living with a parent who is dealing with a chronic health condition? Is it that AND the work I do that has increased her awareness?
I don’t know. But I do know that I spent a lot of the long flight home thinking about my motives in trying to hide my diabetes from her. Clearly I am not doing it because I feel ashamed. I think, perhaps, the motivation is selfish. I try to alleviate the guilt I feel by bringing diabetes into our family by not sharing it with Aaron and our daughter. I try to own it and hide it and keep it to myself as much as I can, because inevitably there are times I can’t do that and they have to be part of it.
What is becoming more and more apparent as she gets older, (and what was clear in Kara’s talk), is that our kids actually want to be involved – and invited to help – in our diabetes care. These kids are magic in so many ways. How privileged am I to be able to call her my own?
This kid. How lucky are we?
I have written before that the thing I hate most about diabetes is when it becomes the problem of other people, especially my family. I feel enormous guilt that diabetes is part of their lives, even though they are not the ones who were given the diagnosis. They don’t have a choice and yet they are involved and invested in this as I am.
So it was with great interest – and a little trepidation – that I added two sessions to my WDC schedule that were being presented by the partners of women living with type 1 diabetes. I knew that I would find them difficult. And I did.
Riva and Boudewijn
Boudewijn (Bou) Bertsch is the husband of HuffPost writer Riva Greenberg. I’ve read Riva for years and have always been interested in her insights, and so thrilled that she writes about diabetes in such a practical way on a site with such reach.
The take home messages for me from both these talks was that as much as we may want to own our diabetes and keep it to myself, our partners share the load. They have a role to play – and they do help make diabetes easier.
There were little snippets from both men about how they get involved in their wives’ diabetes. At one point, Bou held up a small jar of glucotabs saying ‘This is a way for ME to have some control and feel meaningful to Riva.‘ He carried them around in his pocket at all times. It reminded me of Aaron filling jelly bean jars around the house after we brought the newborn kidlet home from the hospital. The breastfeeding hypos were so debilitating that we had left little jars within reach of anywhere I may sit down to feed.
Asim and Sana
Asim Rasheed, husband of Sana Ajmal (former Vice-President of the YLD Program), shared similar sentiments. He also spoke about how in Pakistan women with diabetes are considered not worth marrying, which is heartbreaking.
But perhaps the most illuminating moment of the sessions given by partners was when Bou said ‘I don’t always need to make it better, or come up with another idea. I just need to be present.’ Those words rang so true. I understand the need our loved ones have to ‘fix’ our diabetes. But there’s no fixing this condition. There are measures of coping and living. And supporting.
Aaron has a way of showing that support and he probably doesn’t even realise it. He can’t fix my diabetes; he can’t talk down the high numbers or force up the low ones. But he has a way of acknowledging the overall crapiness of the situation. Two words – ‘Diabetes sucks’ – is all it takes to feel that I have someone championing me; someone riding along side. And that’s all I need.
Renza and Aaron
I am sure that for him – just as for Bou and Asim – he would think it nothing. But heading out to replenish hypo supplies, leaving glasses of juice on the bedside table in case I wake up low or helping me with particularly nasty overnight lows all relieve me from some of my never-ending responsibility.
I can hide it as much as I would like; I can try to own it alone and not share it; I can claim that I am the fiercely independent woman I truly am. But all those things don’t matter. We do diabetes. We don’t have a choice.
There were many highlights at last week’s World Diabetes Congress, but perhaps most impressive for me was the Living with Diabetes stream which sat proudly and comfortably amongst more traditional streams such as Basic and Clinical Science, Education and Integrated Care, Global Challenges in Health, Public Health and Epidemiology and Diabetes in Indigenous Peoples.
Including a consumer stream can be a tokenistic effort. I have seen that at conferences both here in Australia and overseas. But in Vancouver, the stream was completely embedded into the program and included outstanding consumer representation (from not only people with diabetes, but their loved ones too), as well as input from healthcare professionals, researchers and clinicians.
There were some real high points in the stream and over the next few days I will be exploring some of them in detail, but here is an overview of some of the killer sessions I attended:
(I’ll be writing lots more about each of these highlights over the next couple of weeks. Lots and lots more! Trying to get my head straight is proving to be a real challenge as it is completely and utterly full!)
The sessions in the Living with Diabetes stream were very well attended, and not just by the consumers at the conference. Several times, session chair, or the speakers themselves would ask for a show of hands to identify who was in the room. Diabetes educators were probably the most visible. It was terrific to have healthcare professional interest in this stream and I think that other conference organising committees could learn from WDC. While some conferences have a very clear remit as being aimed at HCPs, that doesn’t mean that consumers need to be removed from the conference. Teaming HCPs with PWD to illustrate certain issues is not only a great way to engage and involve consumers, but also bring home the ‘real life’, practical aspect of what is often being discussed at a very theoretical level. It makes it real.
Congratulations to Gordon Bunyon, Chair of the Living with Diabetes stream and his committee for pulling together such a fabulous program. I was honoured to be part of it.
I’m back from one of the busiest and most enjoyable conferences I have ever attended. The International Diabetes Federation’s World Diabetes Congress in Vancouver was a frantic few days, preceded by the Parliamentarians for Diabetes Global Network Forum. Before I get to the nitty gritty of the week, here are some pictures. They tell more than a thousand words and give you an idea of just some of the week. Let your fingers do the scrolling!
Obligatory ‘Outside the conference centre’ photo. I have quite a collection!
Banting. The man to whom I owe my life.
Spending time with inspirational women is one of the perks of this job. Sue Alberti at the joint PDSG and Young Leaders lunch.
My talk abstract.
And getting ready to take the stage…
And actually on the stage!
Slightly blurry, unfortunately, but this great slide was from Professor Jane Speight (ACBRD) in one of her excellent presentations about hypoglycaemia.
Because I’m a smart arse. (Also – ridiculous policy!)
I also had the chance to catch up with friends and other diabetes advocates and activists from around the globe.
These girls! Annie (@understudypancreas) and Kerri (@sixuntilme) make being away from my family just that little bit easier.
Outgoing president of the YLD program, Keegan Hall. He’s my partner in sarcasm!
Annie giving an incredibly eloquent and moving presentation about diabetes in her family, sharing her daughter’s story.
Cherise talking about DSMA and the amazing story that is #Simonpalooza. (Google it!)
Fun folks.
Bastian from #DeDEC speaking about a brilliant initiative he ran in Germany on WDD this year.
Dinner on the last night with Fredrik and Kyle from mySugr, and Bastian from DEDOC
Lots of things to write about in the coming days so stay tuned. It was a terrific conference. But I am so happy to be home!
I arrived in Vancouver at about 2pm on Saturday and by 4pm, I had taken my seat in the Morris J Wosk Centre for Dialogue, surrounded by members of parliaments from all around the globe. It was the second Parliamentary Champions Forum, an initiative of the IDF which involves 155 MPs across 42 countries.
Throughout the three days, we heard about the global diabetes situation. The numbers are terrifying; it is overwhelming. As I sat there, I realised the numbers stopped meaning anything to me. Hearing statistics of the millions of people affected, the billions of dollars being spent just washed over me. I stopped gasping involuntarily when I heard the numbers of people diagnosed with diabetes-related reacting to what I heard.
But I was jolted back to reality when the individual country reports started. Because suddenly, it stopped being about numbers and it became about individuals. Thankfully, this was repeated throughout the three day Forum.
At the welcome dinner on the first night, the inspirational Dr Susan Alberti from Australia spoke about her personal story. On the second day, over lunch, we heard the stories of some of the IDF Young Leaders in Diabetes. We heard stories of discrimination and stigma and lack of access to necessary medication and healthcare. We heard about how diabetes impacts individuals mental health and affects their wellbeing.
And this is why we need to bring politicians and MPs into the diabetes discussion. Of course we need policy change. Of course we need our elected officials to understand the magnitude of diabetes.
But equally, we need them to understand how it affects individuals. We need them to hear about day-to-day life with diabetes and how their decisions to cut healthcare spending, or not fund medications and technology actually make a difference – a significant difference – to how well we live.
I live tweeted throughout the Forum. Catch up at #IDFPDGN
The last big diabetes conference of the year kicks off next week in Vancouver, and tomorrow, I head over there.
I’ll be popping in and out of here over the week, but Twitter is really where it’s at, so follow along on #WDC2015. I’ll be live tweeting sessions – and everything else that catches my eye! Not on Twitter? You don’t need to be to follow along, but if you want to get involved in the conversations and ask questions, you will need to sign up. (It only takes a few minutes.)
The World Diabetes Comgress always has great consumer representation and you can see from the program – especially the Living with a Diabetes stream – that there are some DOC usual suspects/frequent flyers presenting some great stuff.
As always, it’s a last minute rush to get myself ready, and spend precious time with my precious clan from whom I have been away far too much this year. (And I pledge that once I return from this trip I’ll to do my very best to not see the inside of another aeroplane until February!)
‘Don’t you ever get tired of talking about diabetes?’ I get asked this quite a lot. And I can see why. There is a lot of diabetes in my life, and I do speak about it frequently.
The truth is that I don’t get tired talking about diabetes. I get tired talking about my diabetes, but the subject of diabetes is one of which I never tire. Diabetes is too hard for too many people – for all sorts of reasons – and until that is not the case, there is too much to do. Being tired or bored is not an option!
Advocacy can be a broad term. It can refer to political process, influencing policy change or promoting people’s rights and responsibilities. It can also be about raising awareness. It can be small or large scale. It can be about groups or individuals.
Advocating for self can be tiring. Often the times we need to be our biggest campaigners and put in the most effort are the times when it is the most difficult. Standing up to hospital staff who want to strip us of our right to manage our own self-managed condition is all good and well and we can get all assertive and angry about it and talk about what we would do if it happened to us. But that moment when we are actually in A&E for an accident or emergency situation, actually standing up for our self may simply be just too hard. Or impossible.
I know that my advocacy energies are different when I am feeling ‘over’ my diabetes. I tend to sit back a little more and not put myself out there so much. And I look for what others are doing and turn my attention and focus to that. It’s kind of like advocacy-by-proxy!
That’s why larger scale advocacy is really important. Big awareness raising campaigns are important – sometimes there is an ask (such as more funding or increased attention to the condition). Other times it’s just to inform people about the state of diabetes affairs.
A lot of the time, it’s not all huge and loud with lots of media coverage – often there are behind the scenes machinations that take a terribly long time, are terribly boring and involve a lot of bureaucracy and paper-pushing. (One great example of that is the three-year-long battle that has been trying to fix the mess up of introducing a ridiculous definition of ‘satisfactory control of diabetes’ in the current Assessing Fitness to Drive guidelines. The revised guidelines are up for public consultation at the moment and I am thrilled to see that the 9% A1c measure has been removed. These advocacy efforts undertaken by a number of Diabetes Australia staff – myself included – will be of significant benefit to people with diabetes holding a driver’s licence. Blog post to come soon.)
Advocacy doesn’t have to hit you over the head. It doesn’t need to be angry and aggressive. It is great when it is innovative and challenging. And it is okay if it makes you feel uncomfortable. In fact, sometimes we want things to be confronting and a little prickly as that can be a catalyst for people start to think and act.
So, a couple of things I thought I’d mention that tick a lot of advocacy boxes.
Today, Kelly Kunik launched the I Wish People Knew That Diabetes website following a hugely successful awareness-raising campaign back in April this year. Go have a look at the site and explore what she has to say.
Festival21 is being held in Melbourne on Friday 11 December. Sandro Demaio’s advocacy efforts are significant for many reasons, one of which is just how innovative and ground-breaking they are. The aim of this initiative is to address some of our most considerable social challenges, including sustainability, promoting healthy communities and climate change, with food as the central topic. To give you an idea of what Festiva21 has in store, this from Sandro in today’s online newspaper, Broadsheet, ‘We’re talking about empowering people to realise that the food on their plate is one of the most powerful tools they have for change. Food is a truly unifying factor across all schools of thought – politics, religion and race. Everyone loves food and everyone loves to eat.’
On Sunday evening, I caught the last of the ABC miniseries ‘The Beautiful Lie’ – a modern day adaption of one of my favourite books, Tolstoy’s Anna Karenina. I didn’t love the series; in fact, I found it frustrating, and I distracted myself by reading excerpts from the book while watching the show.
But there, in the final episode, was a line that had me thinking. It came from Kitty, one of the characters who had lived with an eating disorder for much of her life. She had just given birth and was watching her beautiful baby boy and said to her partner: ‘You know, I spent so many years hating my body. All I could see was what it looked like and not what it could do.’
I wrote down her words quickly because they resonated so much. I too have spent a long time hating my body. As well as never being satisfied with how it looks, I focus on what it can’t do. I focus on the autoimmune mess that I’ve come to live with, and fertility issues and anything else that is wrong with it.
And in all that – in all the complaints and revulsion, I forget to acknowledge what it can do; what it has done.
When I complain about my faulty, broken body, or grumble about how I don’t like the way I look in a certain outfit, I am forgetting the good things it can do and that’s kind of disrespectful. Because it has done lots.
Today, our beautiful baby girl is eleven. I need to stop blinking, because each time I do, I look up and she is another year older and another ten centimetres taller. She is such a great kid and we are so utterly proud of her.
And my body conceived her and grew her and nourished her. And once she was delivered, it fed her, and it managed, through the lack of sleep and complete and utter new-baby fog, to look after her and keep her safe.
My body rolled around on the rug with her and together we rolled down grassy hills; it danced and we ran with scarves in our hippy creative dance classes at Mangala; it sat for hours on the floor of libraries and bookstores as we read; it chased her around playgrounds, pushed her on swings, caught her on slides; it climbed play equipment and trees; it’s answered a million ‘but why?’ questions; it walked for miles and miles and miles as we explored cities around the world.
And it has cuddled and hugged and kissed her beautiful little body, enveloping her in love.
Even with all the things that I complain about and the things that I hate – even with a health condition that sometimes needs immediate attention – my body has still done all those things. It doesn’t matter how it looks and it doesn’t matter about the things that it can’t do. I may not be able to make my own insulin, but I can act as a pretend pancreas pretty well and do a hell of a lot of other things too. It may not have given me as many children as I would have liked; but it did give me one wonderful little girl. And that is enough. So very, very much enough.
Birth day. So loved.
Diabetogenic 