I had a lovely dinner last night with a colleague and friend. We ate great food, drank terrific cocktails and didn’t shut up except for when the waiter was telling us the evening’s specials (and even then we ‘oohed’, ’aahed’ and ‘yummed’ our way through that).

At one point, my friend reminded me of a beautiful part of the book Captain Corelli’s Mandolin, a book I read when it first came out back in the mid-1990s.

As soon as I got home from our dinner, I searched for it so I could read the words again. Here they are:

Corelli

When I first read the book, these words kind of washed over me. I was hearing them quoted a lot, and in the coming years I heard them read at weddings. They are beautiful words; read aloud it is beautiful prose.

But it wasn’t until last night that I read it and felt really understood it. The poem is an ode to enduring love, but that’s not what struck me. At least, not necessarily the love bit. But the endurance bit certainly did.

Over the last couple of years, things have been difficult. When I look at how I have been managing my diabetes, it has been a series of fits and starts. There are spurts of focus, then dips of almost denial. There are times of desperation and exhaustion and then periods of energy. It’s uneven. New devices see me get enthusiastic and motivated, but only for a short period. Then I return to the slump.

It’s not the exhilarating times that matter. Of course they are wonderful and enjoyable and sustaining and thrilling. Having a new pump or a new meter or a new CGM is a sure-fire way to get me thinking more about diabetes. But this doesn’t last. And it also doesn’t really count.

Equally, it’s not the slumps that matter.

What really matters is actually what you might call the boring times. It’s what comes before and after the flurry of interest of a new toy. Or the times around the ‘nosedives’.  I feel best about my diabetes management not when I am stressed about how little I am doing or happy because I am so focused. It is actually the time when it is just there, plodding along, being considered at an ‘appropriate’ level. It’s not sexy. It’s not dramatic. But it’s so good because I feel relaxed and comfortable about it. It just is.

I am sure that there is something to be said about the fast-paced world we live in and this idea that we always need to be thrilled by something new. It’s too easy to get complacent and comfortable. That’s probably one of the reasons that I embrace new and emerging technologies with such zealousness.

However, if I was relying only on the new stuff to sustain me, it would never last. A new pump becomes just a pump very quickly.  A new meter stops being new and shiny after a while and becomes just a meter. And a CGM may be magical and brilliant and life-changing until it become just another tool in the diabetes tool kit. That doesn’t make them any less important or valuable. But if I was relying on the excitement of the new, I would need a new toy every week or so!

The endurance of ‘just being’. That’s the sweet spot. That’s when I know I am getting it right. I just wish I could work out how to be there a whole lot more!

I am lucky that Aaron is always listening to new music. This CD was a recent purchase. Sometimes I hear something that makes me just so delighted. Like this live performance of my favourite track from the CD.

If you have diabetes and live in Australia, it is highly likely that at some point you would have received some information, support and/or education from Diabetes Australia.

These services range from the provision of information via websites, blogs, magazines, information sessions and webinars. They also involve activities such as camps for children with type 1 diabetes, peer support groups, targeted information sessions which look at issues including men’s health, women’s health (including the very important topic of pre-conception planning and care), programs for young people with diabetes, programs for older people with diabetes, including those in nursing homes, working with culturally and linguistically diverse groups, delivering programs to Aboriginal and Torres Strait Islander communities and the training of health professional training.

More? Well, there is also a huge body of advocacy work – both at an individual and policy level – that takes place, as well as representation on expert panels and working groups.

Yesterday, it was announced that the Government has signed the 6th Community Pharmacy Agreement (6CPA). This agreement covers the supply of PBS medicines and, more broadly, pharmacy remuneration for dispensing subsidised medicines.

A significant change in 6CPA from previous agreements is that from July 2016, NDSS products will be distributed through the pharmacy wholesaler distribution network. This is where it starts to affect people living with diabetes.

Basically, the NDSS is broken into two parts. There is the product supply and delivery component and then the support services component. The latter is where all those things I listed earlier in this post fall.

Okay – let me get the disclaimer palaver out of the way. I work for Diabetes Victoria (formerly Diabetes Australia – Vic). I also have a national role where I work for Diabetes Australia. I am a long standing member of the Diabetes Australia family – something of which I am incredibly proud. My work involves providing information and support services to people living with diabetes in Victoria, and managing a national project about young people and diabetes. I am a spokesperson for the organisation – especially about diabetes technology and social media. I do all these things backed by a team of health professional and consumer experts.

Right – with that out of the way, I will also say that I have no more information than what is available in the public domain, so this is not an opportunity for me to be sneaky in trying to get people talking about this to promote Diabetes Australia’s work. That’s not what this is about. This is about what it means to people with diabetes living in Australia. Because I am one of those people.

The 6CPA clearly outlines that product supply and delivery (that is, all the consumables we use to help manage our diabetes) will now be distributed through the pharmacy network. As a person with diabetes, I am confident that this means that the supply of these products is protected (along with the subsidised prices) and that I won’t be expected to pay more for my strips or pump supplies.

But what about ongoing education and support services? Diabetes Australia has a long history of providing evidence-based information. In recent years, there has been a very strong focus on patient-centred care, and most programs now have some sort of consumer input. Engaging people living with diabetes is considered just as important as engagement with healthcare professionals. I know this is true – I am frequently asked to either be a consumer rep, or (perhaps most pleasingly) assist with finding someone to be a consumer rep.

The provision of diabetes information needs to be done by people who ‘get’ diabetes. I am a really strong believer of this. I believe it to be true of all health conditions – there need to be experts (and that doesn’t only include clinical experts) at the helm. And there needs to be a strong link to the community.

These services Diabetes Australia provides change lives – I hear that every time I speak with a parent whose kid has been to a camp. I heard that – repeatedly – on Saturday at the Diabetes Expo where I was emcee.  I hope this carries on.

Last week, I tweeted/Instagrammed/Facebooked this:

iPhone

Because it is the best cartoon ever. Ever. Ever.

My iPhone could, in some ways, be considered my primary-care physician. It has the ability to manage everything about my diabetes. All in one little hand-held device with a cute Kate Spade cover.

It has the contact details of my real-life (i.e. non-iOS) healthcare team. I don’t even need to dial – I just have to ask Siri to connect me! And she does. Or else she connects me to the Japanese restaurant from where we frequently get Friday night takeaway. Either is good.

It has apps that can do all sorts of things – produce pretty graphs, tell me the time of day that my BGL is the highest (and therefore showing the time of day that I am most likely to have eaten doughnuts) and remind me that I’ve been doing hardly any BGL checks. Judgemental little thing.

It keeps appointment times and, if I was the organised type, could remind me when I need to fill a prescription or am overdue for something. (Note to self: book in pap smear.)

It has all my different social media platforms, easily accessible, so that I can see what is going on with everyone I have ever known and not known, see photos of what people are eating, and get links to videos of dogs and cats being cute. Which make me smile and feel happy which is good for my mental health.

It connects me to people with diabetes at all times of the day. It’s a 24 hour, 7 day a week, 365 day a year peer support group full of people who are able to provide reassurance, humour and love. And teach me to swear at high or low BGLs in all the languages of the world!

It contains vital information including my pump basal rates. Which is good because I am sure that information will come in handy one day.

Dr Google lives in there and she is able to give me information about pretty much anything whenever I like. For example, at 3am when I wake up with a headache and need a diagnosis of the likelihood of some sort of tumour.

Everything I need. Doctor, counsellor, friend and comic. No wonder I start hyperventilating when it’s not in sight!

Consultation time

 

I have a love of words that stems from a love of reading and a love of conversation. I love learning new words and discovering new meanings. Clever conversation makes me swoon. My favourite TV shows become favourites because of the banter between characters. I read cookbooks by Nigella Lawson as much for her prose as for the recipes.

People who know how to use words are my heroes and I envy them enormously.

Language is a thing of great beauty and power. But with power, there comes an ability to destroy and misuse and oh, oh, oh, how words are misused!

I don’t like abbreviated words. ‘Awks’ is not a word. And ‘totes’ as a noun refers to a bag and as a verb to carrying something around. It is not a substitute for ‘totally’. (Also, it’s possible I am an 82-year-old woman called Beryl who is about to call 3AW and complain about ‘the youth of today’.)

But most of all, I despise made up words.

So it’s a little odd that one of my favourite Tumblrs is all about made up words.

The Dictionary of Obscure Sorrows invents words that fill a gap in language. Creator of the Tumblr is John Koenig and he is incredibly clever in the way he comes up with these new words. He has a Facebook page to explain the etymology for each word (often made up from existing words jumbled together) and YouTube clips, exquisitely telling the story of the word.

Some of the made up words are strangely beautiful, although I wonder if that is because what they intend to describe is beautiful. Unsurprisingly, vellichor is my favourite.

Sometimes, there are no words to describe a feeling or an experience. This is often the case when trying to explain diabetes – especially to people who do not live with it.

Here are some things I wish there were words for:

That feeling when you know you are low but refuse to acknowledge it. Your brain is foggy, yet at the same time your mind is defiantly in denial. 

The frustration you feel when you are desperately trying to play by the book, yet still not getting the diabetes results you would like to see – that you expect.

The love you feel for diabetes technology which is often coupled with an absolute hate of it.

That feeling of meeting someone with diabetes who you just click with and know that you will be friends forever – not because of diabetes, but just because, although kind of because of diabetes! (Ping: These girls. And this one.)

And adding to that – being in a room full of other people with diabetes and hearing the beeping and vibrating and alarming and clicking of a hundred meters/pumps/lancets/pens/CGMs and being absolutely oblivious to it all because it just feels so ‘normal’.

The anticipation of digging a spoon into a new jar of Nutella.

The superciliousness you feel – and the exaltation you feel you deserve – when you change your lancet more than a couple of times of year.

The rare, unusual and yet liberating feeling of being completely, truly, utterly, entirely, wholly naked – no cannula; no sensor; no tape on your body.

The appreciation, gratitude and indebtedness you feel towards your loved ones who are forced to deal with diabetes that one step removed, and love you no less for it.

The realisation that a diabetes blog post you are reading is so perfectly true, so accurately precise and tells your story so honestly that you feel that you wrote it yourself.

Being high and all that comes with it.

I wish there were words for these things. I wish that there was a way that I could express what diabetes is about – how diabetes feels – in a way that is more than just multiple words on paper and a (frequently ridiculous) stream of consciousness that is often nothing more than an unintelligible mess!

I’m not sure that I would ever use Koenig’s words in a sentence – spoken or written – and he is certainly not the first person to make up words. Shakespeare made up words in his writing. Edward Lear did too – really, just what is a runcible spoon? But nonetheless, it is somewhat magical to see – and hear how – random letters come together to create words that seem to somehow, suddenly, make complete sense and give a name to things that we absolutely feel.

I got to Saturday evening and felt like I needed to collapse! I was more than a little diabetes-ed out. The end of last week and the beginning of the weekend were huge – attendance at a health professional event on Friday, the Diabetes Expo on Saturday and, of course, the gift that keeps on giving, the television thing on Thursday.

When diabetes is so front-and-centre, it is really tough to think clearly and about all the information that has been shoved into my itty-bitty mind. Stopping and searching around for some things I have learnt and taken away can be difficult. Which is why Twitter is good!

Here is what I learnt over the last few days.

People want information about diabetes. There is still so much misinformation out there that people living with diabetes sometimes have a hard time cutting through the noise and working out what is valuable info and what is made-up-psuedo-science-crap-from-some-idiot-trying-to-sell-you-magic-beans-to-cureall.  So it’s good to have sensible people saying sensible things! (Hashtag – Evidence)

WeekendTweet4

 

WeekendTweet5And I also learnt that diabetes is still seen and considered by too many as a clinical condition and there is not enough attention given to the emotional impacts of living with it.

WeekendTweet1

Thankfully though, I was reminded that there are people out there who can help with this!

WeekendTweet3

I learnt that Twitter trolls will latch onto hashtags that are getting some attention and try to infiltrate it with their nonsense. These trolls should be ignored. Except, of course, I didn’t. (However, I will not share your Twitter handle here!)

WeekendTweet8

And these nutters will try to discredit you by challenging your Nutella addiction. Fools!

WeekendTweet2

I was reminded why the Herald Sun is not the place to go for credible diabetes information.

WeekendTweet6

And promised baklava from one of Australia’s leading researchers in diabetes. Thanks Sof!

WeekendTweet7

I learnt that it’s surprising who watches morning magazine television shows. Like the uber-cool waiter at Marios who announced loudly as we walked into the café yesterday, ‘I saw you on TV’!

I remembered that people walk away from these sorts of events feeling positive and rejuvenated and connected. Which makes them worth it in a million different kinds of ways.

WeekendTweet9

 

WeekendTweet10

 

And I learnt that after a hugely successful few days of work activities that hanging out with my family, listening to Carol King and drinking coffee in my favourite café and then watching the Eurovision song contest final will make me feel energised and ready to face the new week.

Hello Monday!

I know it’s not Friday, so here is something for your MONDAY listening pleasure!

Today, I am at the Diabetes Victoria and Baker IDI Health Professional Symposium and the first session has me thinking – and sitting down the back of the auditorium banging out this post.

The keynote presenter for the Symposium is Professor Herzel Gerstein talking about hypoglycaemia. He made a wonderful point in the Q and A portion of his presentation, one that I think is frequently overlooked.    

IMG_0783

The language (yes, I’m talking language AGAIN) we use around hypoglycaemia is misleading at times. Generally, we have severe hypoglycaemia and mild hypoglycaemia.

Severe hypos refer to those we need assistance to treat. It may inolve unconsciousness or seizures. Severe hypos sometimes need paramedics’ assistance, or a trip to the hospital.

Mild hypos are those that we can manage ourselves without too much hassle.

The problem with using these two terms is that it makes it sounds as though mild hypos are nothing. They’re just a part of living with diabetes, deal with it, off you go.

That may be the case in practical terms. A so-called mild hypo may mean grabbing a handful of jelly beans, waiting a few minutes and then off you go. Or it might be slightly more than that and take longer. But whatever it is, it’s termed ‘mild’ because no assistance was required.

But the thing with ‘mild hypos’ is that they do have the potential to weed their way into your psyche and suddenly become very significant.

If those mild hypos mean that you are often running late for things, you start to wonder if others are questioning your reliability. If those mild hypos have you needing to sit things out for a moment, you worry your friends or your kids or your family think you are disengaged, not wanting to participate. If those mild hypos result in you being a little vague for a while in work meetings, you start to fear your boss or colleagues think that you are not paying attention, not interested, don’t understand.

These are not ‘mild’ things. These are really significant and mean worrying and stress and anxiety and anger and sadness and fear and guilt and all the other things that diabetes makes you feel. There is nothing mild about it!

I think this is a really important issue for healthcare professionals to remember. By brushing away mild hypos as just a short-term-complication-everyone-has-them notion, the actual impact on the person living with diabetes is ignored. it’s minimising just how big a deal mild hypos can be and not providing any strategies for coping and managing with the emotional side of these episodes.

A mild hypo may not necessarily be terrifying in the moment, it may be quite manageable at the time, it may not affect anyone else or draw too much, if any, attention to the person having the hypo. And this is good!

But don’t for a minute think that it doesn’t mean a silent feeling of dread (and possibly a silent word of thanks to the hypo gods that it was nothing more!) or feelings of significant distress afterwards.

I went to TV Land today to do an interview on a morning show about the artificial pancreas. I am always excited to see type 1 diabetes in the spotlight. Actually, I am always excited and pleased to see any diabetes in the spotlight, provided the reporting is accurate and the information devoid of any myths. And they don’t use the word ‘sufferer’.

I was a little anxious to speak about the artificial pancreas. It was being hailed as a ‘diabetes breakthrough’, which is a little misleading given that the trials for this technology have been underway for some time now. I am always very careful when talking about research and emerging technologies, making sure whatever I say is in context – I don’t ever want to be accused of promising something will be here, available for all, in ‘five years time’. In fact, I had made it really clear when speaking with the producer prior to the interview that this is NOT a cure and that it would probably be better that the word ‘cure’ not even be mentioned.

So, I was asked about how the AP would change things for people and what it would mean and gently speculated (based on a few things I’d read recently about current trials) as to when it would be available. I was a little hesitant at the ‘and what will it cost?’ question, because 1. Who knows? and 2. The answer is most likely ‘Out of reach for most people. Which sucks!’ and I didn’t think that would be a good thing to say on TV when I was doing my best to sound professional.

Big hair. Big make up!

I’ve not seen the clip from this morning yet. Trying to focus on a camera, and listen to people I can’t actually see (they were in Sydney, I was in a dingy box of a room in Melbourne) and not wipe my Bold and the Beautiful-esque make up off whilst flattening my big hair was really not ideal for coming across as poised and professional. But I didn’t giggle uncontrollably. And managed not to swear. So, I think (hope) it was okay!

I got into a cab outside the studio when it was all over and the driver asked me if I was famous. (I would suggest the need to ask that question would also provide the answer, but whatever.) ‘Ha! Ah, no. Really. No,’ I said to him. ‘I was interviewed about diabetes research.’

‘About a cure? My son has type 1 diabetes,’ he turned around to look at me.

I looked back at him. I looked at the desperate look on his face. I know that look – I’ve seen it thousands of time. I’ve worn it thousands of time.

‘No. I’m sorry.’ I said. ‘It was about a potential breakthrough in technology – a new device that may be available in coming years. It will make things easier. But it’s not a cure.’

He looked away, disheartened.

‘I’m sorry. Really. I’m sorry.’

I looked out the window as the cab sped through the city, the buildings all shiny from the rain. And right at that moment, I felt as despondent as my cab driver looked.

UPDATE – You can watch here.

 

It’s kinda ingenuous to refer to today’s post as ‘Wordless Wednesday’ given the image below is full of words. Plus I’m typing words. So I may as well keep typing a few more.

Inspirational quotes give me the shits. Whether it’s posters on the walls of corporate offices or on the walls of my social media feed, they annoy me.

So here’s one for today!

Know the difference

This one, (found on the Diabetes Support Facebook page), I actually rather love. I am so guilty of referring to myself as a failure because I am not managing my diabetes as well as I would like to be. But at no time have I decided that my health is not worth the effort. And certainly, at no time have I thought that I am not the effort.

But I have slipped up. I have screwed up. I have lost focus and caved. I’ve given in. I’m busy. I’ve become lazy and I have been so, so, so, so distracted. This is a set back. Nothing more. Nothing less. A set back.

Pop over to the Diabetes Victoria blog for my post about this Saturday’s Diabetes Expo. It’s going to be a jam-packed day of diabetes information! If you’re going, make sure you come and say hi to me. I’ll be emceeing throughout the day.

This is my study.


It’s just one of the rooms in our home that is filled with books. There are books everywhere throughout our house. The front living room has shelves on either side of the fireplace and they are filled with our collection of music books. The kidlet has built-in floor to ceiling shelves in her room, almost completely full of her books – from her first board books to the books she is reading now. There are cookbooks on either side of the wood-fired stove in the kitchen and, in our bedroom, our bedside tables are piled high with books; another tower of books about New York is stacked on an antique cupboard; on the blanket box a pile of fashion books and illustrations sits, ready for a quick flick through.

I have a routine when I buy a new book. I open up the cover, and write my name and the month and year I bought (and usually then read) the book. This little tradition has provided me with a kind of living history of my reading habits.

New York-based (but raised in Melbourne) Lily Brett – one of my all-time favourite writers. I re-read this book just before we went to New York last year.

So with this life-long love of reading, it was with complete and utter confusion when, a couple of years ago, I found myself incapable of finishing a book. I would start a new book eagerly, and after a couple of chapters, I would stop. I found myself distracted, unable to concentrate. I would read the same paragraph over and over and lose track of what was happening. I couldn’t get a hold on the characters and was confused at the plot. I’d go to bed at night, anticipating reading a few chapters and then simply couldn’t focus. So I’d put the book down on the ever-increasing pile of half-read books on my bedside table. And not finish it, starting a new book, only for the same thing to happen.

I tried everything – pulling old favourites down from the shelves and trying to reread those. I tried different genres. I tried easy, brainless, fun chick-lit novels that didn’t take any real brain power or concentration to get through the enjoyable fluff. But I still could not make it through a whole book.

Instead, I would grab my iPad and mindlessly flick through social media sites, looking for and at I don’t know what. But whatever it was, it didn’t take attention. It didn’t take concentration. It didn’t take focus.

I was burnt out with reading. Just as I was burnt out with my diabetes. The lack of motivation I was experiencing when it came to managing my diabetes was flowing into other areas. I had never before lost the motivation to read and it was somewhat confusing and startling. I would buy new books but I stopped writing the date in the beginning of them because I knew that I would’t get through it and that the date would prove nothing.

It continued until the end of last year when I started to give a name to what was going on. I stopped making excuses for the burnout and tried to work through it; I looked at what else was going on and set up strategies to manage the situation.

Admittedly, these strategies haven’t worked on the diabetes burnout – it’s persisted (but I’m getting help for that now!) but naming it and owning it certainly did help in other areas.

And I started reading again.

Today, I’m back to the voracious, desperate reading that has been a character trait throughout my life. On sunny days, I can be found on the wooden bench under the front veranda, reading. As the days have gotten cooler, I am frequently curled up in front of the fire in our living room, or at the kitchen table, the room warmed with whatever is baking in the oven. I’ve been dealing with a relentless sinus-y cold the last week or so and have been taking myself off to bed to relax and read – even managing a couple of afternoon reading sessions followed by naps over the weekend.

I’m so glad I found my reading mojo! Being able to escape into a great book is one of life’s simple pleasures. One that I am enjoying once again.

The other day, I did something I’ve not done for over seventeen years. I picked up my flute and played it.

I used to be a flute player. This is former life stuff, but from the age of eight until I was 24, I played pretty much every day. I studied music from grade three, right through secondary school and at University.

And then I stopped. Until last week.

I’m not sure what compelled me, but the other day, as I was listening to my daughter play the piano, I decided that I wanted to play. ‘Would you like me to play with you?’ I asked her. She nodded and I searched around the music room and found my flute, which is actually now my husband’s flute, which he plays all the time.

I opened the box, put it together, asked her to play me an ‘A’ and tuned up. ‘Okay,’ I said. ‘Start playing; I’ll jump in.’

And I did.

When the piece finished, the kidlet turned around with a huge smile on her face. ‘Wow, Mum, that was great! You are really, really good.’

No, I’m not. I’m really, really bad. The tone was grating to my ears and there were a couple of low notes that I couldn’t even get out because I couldn’t cover the holes on the open-hole instrument.  But I remembered where to put my fingers and I could still read the notes and I knew the pieces.

And it was fun. Really fun!

‘Let’s play something else. Choose another piece,’ I said.

We played through all of her repertoire, laughing at mistakes, picking up where we left off and smiling at each other when we got to the end of each piece.

‘I’ve never heard you play before,’ the kidlet said to me. ‘I didn’t know you were so good.’

I loved her for saying so. I really did. I gave her a huge hug and thanked her for being so lovely.

‘You need to play more, Mum. You should start playing again. Why did you stop?’

I shrugged and promised that we would play again together soon.

I stopped playing the flute around the same time as I was diagnosed with diabetes. It also coincided with stopping teaching music. I wanted or needed a change – and that was it.  I can’t remember the last time I played – there was no ‘this is it’ announcement. I just never took the flute from its case again to play.

I’ve not stopped ‘being musical’ if there is such a thing. I still love music; I still listen to a lot of music and go to a lot of gigs. Our house is full of music – instruments in most rooms, artwork featuring musicians or music halls or music or concerts cover our walls. There are CDs and music DVDs and music books scattered throughout the house. It is a house of music and I wouldn’t have it any other way.

But me as a musician – that ship sailed. I’m okay with that. I really am.

‘So, I played the flute today.’ I told Aaron when he got home from work. ‘I played along with the kidlet while she was practising the piano today. Maybe I’d like to do some playing again.’

A couple of days later, I walked into the kitchen and there on the table was a pile of flute music. Aaron had brought it in for me from the studio in the back garden. Since then, every time I’ve walked past it, I’ve looked at. And once, I sat down and flicked through some of the pages, reading the notes, remembering the tunes.

I thought to myself ‘It seemed like a different life’, but actually that’s not true. It is all the same life and I don’t think it helps to divide my life into pre- and post-diabetes. It’s all on the same continuum. My life changed – significantly – when I was diagnosed with diabetes. But then again, it also did when I met my husband and when we had our daughter.

Perhaps it’s wrong to refer to my time as a musician as ‘a former life’. Instead, it’s just one chapter in this life. One that keeps evolving and surprising me.

Read about Renza

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