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.

D blog week 2015 banner

It’s Diabetes Blog Week! Thanks to Karen from Bitter~Sweet Diabetes for coming up with and coordinating this exciting annual event. It’s a great chance to discover other diabetes bloggers from around the world. Here’s my fifth entry for the week!

I have been looking forward to this #DBlogWeek post all week because, well, food is my thing. I still believe that growing up in a family where food is considered important and dealt with in a positive, healthy way is why I have such a balanced, appreciative attitude towards the food I eat and the food I prepare for my family and friends.  And I hope that this is being instilled into the mind and heart of the kidlet of the house.Food quote italian food

I love to cook for people and our new home is the perfect entertaining space. We have a huge kitchen with heaps of prep space and a view over the garden. There is an old Aga stove which, when we get around to having a chimney sweep clean it out, will be used for all sorts of things including making bread and pizza.

On Saturday night, we had some friends over for dinner. Although I love cooking, I can be a lazy cook. I make no apologies for that, nor is it a negative trait. I made a chicken, chorizo, lemon, garlic thing that took a whole three minutes to throw together. The oven did the rest. (In a baking tray – chicken pieces, chopped chorizo, sliced lemon, bashed garlic, a bit of chicken stock in the bottom of the tray, sprinkle the top with paprika, sea salt and black pepper and shove in a 180 degree (Celsius) oven until the chicken is all golden on top and the smoky chorizo has infused it all; about 30 – 45 minutes.) I made a couple of yummy vegie-based sides and a salad using quinoa and that was it. Dessert was a crumble because it’s crumble weather.

Crunchy apples easily become soft, cinnamon-y and comforting (especial with crumble topping!)

Crunchy apples easily become soft, cinnamon-y and comforting (especial with crumble topping!)

A story of crumble...

A story of crumble…

While we’re talking crumble, I always make double or triple the quantity of topping to keep on hand in the fridge. That way, it’s always easy to throw together a simple, yet scrumptious dessert. Stewing apples or pears takes no effort and if you want to be super-lazy, open a tin of peaches or apricots or whatever floats your boat, drain some of the juice and sprinkle the crumble-topping-already-in-the-fridge over the top. Twenty minutes in the oven and you’re done. (Basic crumble recipe – rub together a cup plain flour and about 100 grams of butter; add a couple of tablespoons of brown sugar, a cup of oats, and then whatever else you have that you think will work. Add cinnamon for apple crumble, dark chocolate for pear crumble, coconut when you have rhubarb, almonds for stone fruits. Walnuts always work in crumble. Always!) According to my husband and the kidlet, crumble must come with ice-cream; I prefer King Island double (or triple) cream. Plain Greek yoghurt works well too.  

Baking biscuits and cakes is one of the most therapeutic and calming things I know how to do. Yesterday, I decided to try something new and found a recipe for Nutella drop biscuits which were just a buttermilk scone recipe with Nutella swirled through. Great concept; super easy, made the house smell like a bakery and tasted great. Plus, they can be frozen and then thawed, heated and served with some salted butter for a speedy afternoon tea.

Last night's dinner.

Last night’s dinner.

Vegetables are a big deal in our house. I love veggies and at this time of year, my favourite way to eat them is in a thick chicken stock-based soup with added barley. Again, this is a lazy cook thing because not only is it a great way of using up almost-past-eating vegies, a huge vat will do a couple of meals. (It freezes really well too.) I usually serve with some toasted crusty sourdough. Last night, however, I used up some leftover risotto and made crunchy rice croquettes to go on the side.

This morning at Stove Top (my favourite café near work).

This morning near work at Stove Top.

We eat out quite a bit. For me, the plethora of workday meetings are often more palatable if there is a coffee, a pleasant café and, possibly, a little cake (Or fairy cake!) involved. Weekends involve catching up with friends at local cafés and regular catch ups with the girls are another excuse to go to Marios.

Food is a thing of joy. It is a thing of love and it is a thing of celebration. It should taste wonderful, it should be evocative and it should not be full of angst, but I know that is not the case for a lot of people. I really do believe a big part of that is the current focus on ridiculous diets and eating plans and rules instead of enjoyment, moderation and joy.

Food quote 3At the moment, it’s a rare day when the oven is not on, baking or stewing or roasting something in its warmth, intensifying flavours and delivering, at the end of the cooking process, a wonderful hearty dish. It’s probably my favourite thing about this time of year and there is nothing better than settling in for the cold night on the couch, fire lit, with a delicious, hearty bowl of something.

I am so pleased that diabetes hasn’t stripped me of my love of food, because many people do think that those of us living with diabetes have a strict, flavourless, boring, repetitive diet. It doesn’t need to be that way.

 

Food quote 1

I’d add eating after cooking!

 

Friday tune – Fats Waller with ‘All that meat and no potatoes.’

D blog week 2015 banner

 

It’s Diabetes Blog Week! Thanks to Karen from Bitter~Sweet Diabetes for coming up with and coordinating this exciting annual event. It’s a great chance to discover other diabetes bloggers from around the world. Here’s my fourth entry for the week!

Welcome to Diabetogenic Live! Here is my first ever (and possibly/probably last ever) vlog. I’m talking about the changes I’d like see in the Land of Diabetes (which is nowhere near as much fund as the Land of Goodies or the Land of Birthdays or the Land of Do-As-You-Please).

A few words of warning before we start:

  1. I speak really fast.
  2. And I wave my hands around a lot.
  3. I speak really fast.

D blog week 2015 banner

It’s Diabetes Blog Week! Thanks to Karen from Bitter~Sweet Diabetes for coming up with and coordinating this exciting annual event. It’s a great chance to discover other diabetes bloggers from around the world. Here’s my third entry for the week!

Last week, as I skimmed through the topics for this year’s #DBlogWeek and saw Wednesday’s prompt, I gasped. It was an involuntary, sharp, sudden intake of breath and, somehow, it felt painful. I knew what I would write about. I knew I needed to write about this. It’s not only about diabetes, but then, it is, because everything when it comes to my health and my body is intrinsically linked to diabetes.

You see, it is time to let go. It is time to somehow acknowledge that I need to say good bye. It is time to release the pain and the hurt and the ache that, although it will to a degree always remain, is suffocating me in many ways. I need to unfurl it from the tight, protected ball that is so deeply placed inside of me and liberate myself from the hold it has.

Even though it is time to say goodbye to the pain, to the loss and the grief, I don’t want to. It’s not that I am bidding goodbye to the baby that, every day, I think about, or to forget about the loss.  But it is time to farewell the dream. 

It has been time for a while now, but I have held on stubbornly, resolutely, fiercely because I feel so sad and like I failed this little person before they could come into the world. By not letting go, I’ve somehow kept them alive and safe – at least in my heart and my mind. By feeling the pain, I have found a connection that was lost. 

And I’ve wanted to hold on to the dream of what could have been, and to spend daydream-y chunks of time each day imagining and wondering of little faces with long eyelashes and tiny heads of hair and miniature fingers wrapped around mine and the deep, even breathing of a sleeping baby. Because the baby was mine – was made from me, of me – and I didn’t get to actually see his face, brush the hair from her eyes, feel his fingers gently squeeze mine, hear and count her beautiful breaths.

I’ve held on for reasons that are confused and confusing and selfish and tied up with my very being. It makes me question everything I know of myself. Is this giving up? Is letting go giving up? Is it dishonouring the memory of my son or daughter? Have I stopped caring? Am I admitting defeat? Or acknowledging my shattered, damaged, broken body has won?

I don’t know and I will work through that over the next few months – with the some professional help.

But it is time. So. I say good bye. And it is time to start to forgive myself.

D blog week 2015 banner

It’s Diabetes Blog Week! Thanks to Karen from Bitter~Sweet Diabetes for coming up with and coordinating this exciting annual event. It’s a great chance to discover other diabetes bloggers from around the world. Here’s my second entry for the week!

I am an open book. I am an over sharer. I have no filter. I frequently blurt out things that people really don’t need to know. ‘I’m just going to have a pee’, I might exclaim, getting up from the table and rushing to the bathroom when really, a simple, ‘Excuse me for a moment,’ would have sufficed. I find ice-breaker exercises at work meetings excruciatingly difficult because I can rarely think of one thing that no one knows about me or something interesting about me that I haven’t shared.

I wish I could say that I only share stories that paint me in a positive light, where I am all elegance and class, and look like I have it all together. But apart from being a complete and utter lie (seriously, the word ‘klutz’ was invented for me), it would give a really false sense of what diabetes is about. So you get the embarrassing and hopeless and ridiculous. You get the stupid and the nonsensical and the repeated mistakes. All of it. I am sorry.

But, having said that, there are things that I do not write about on my blog, or even speak about with others. There actually are parts of living with diabetes that are difficult to write about because I don’t like how they makes me sound.

There are days that diabetes feels overwhelming. Of course I write about that. (Oh, don’t I write about that?!) But what you probably won’t see me write about – and what I rarely talk about – is that sometimes I think that I have been dealt a really lousy hand when it comes to my health.

I don’t compare conditions – you will never hear me say that I have it worse than you, or, conversely, that we should just get over ourselves because it’s only diabetes and it could be worse. (By the way, don’t ever, ever, ever say to someone with diabetes – or anything else for that matter – ‘It could be worse’. Seriously. Just don’t.)

But you know what? There are days – usually after a bout of nasty, recurring lows; or vulgar, unforgiving highs; or this freaking burnout that seems to have moved in permanently – that I do really want to say ‘Enough! It’s not my turn anymore’.

And the reason I don’t share this is because apart from making me sound pathetic, I can’t allow myself to get into the sort of funk where I just feel sorry for myself. It’s too easy to start to believe it; it’s too easy to start to think that I really do have it tough, that it really is unfair.

The truth is, it’s not unfair. It’s just life. We all have crosses to bear, health issues to manage, shitty things that happen. And I don’t want to be the person who focuses on the crap when there is, somewhere in there, some sort of silver lining – often in the shape of a jar of Nutella.

every jar of nutella

 

D blog week 2015 banner

 

It’s Diabetes Blog Week! Thanks to Karen from Bitter~Sweet Diabetes for coming up with and coordinating this exciting annual event. It’s a great chance to discover other diabetes bloggers from around the world. Here’s my first entry for the week!

I honestly believe it when I say that diabetes hasn’t stopped me from doing anything. I was diagnosed at 24 years at a really busy time where I was making plans, dreaming of my future and beginning to really think about who I wanted to be in this world.

And those plans I was making all happened. And the dreams came true. And I found my place in the world.

There are, however, some things of which I am particularly proud. The red velvet cake I made for Mother’s Day afternoon tea yesterday should probably get a mention. My book and boot collection make me proud as punch! I can recite pretty much the whole of Marx Bros’ A Night at the Opera. I can whip pretty much anyone at air hockey. But these things were never in question. I was always going to manage to achieve them. Diabetes or not.

But diabetes did make me wonder about some of the things I wanted to achieve. The dream of becoming a mum felt, for some time, as though it were slipping away. With diabetes mixed up in other serious health issues, getting pregnant – and staying that way – was something I thought would never happen . But that dream too came true in the form of a chubby-cheeked little baby girl who I am so privileged and lucky to call my daughter.

Diabetes doesn’t factor into the planning and shaping of my dreams and hopes. I wonder if it just makes me more desperate and determined to achieve. Is it despite or because of diabetes that we make plans – some large, some small – and then go all out to reach them?

because i'm crazy enough

I get the power of self talk and I also like to be positive. My diabetes has allowed that to a degree. It has played out in a way that hasn’t stopped me. Saying ‘I can’ has always ended up in ‘I did’ because, as well as being determined, the diabetes barriers have been minimal.

But that may not always be the case. I hope that if –when? – diabetes does throw up more challenges and makes things more difficult, I never stop dreaming and planning and hoping. I hope I never stop saying ‘I can do this’ – or even more so, ‘I did this’.

ithinkican

Diabetes is really not a topic of conversation much for me when outside of work. And outside of this blog. I know – hard to believe. But when I am around friends or with my family, there may be a passing comment, but it rarely dominates discussion.

Having said that, we had our neighbours over for dinner last weekend and the ‘Pumpless in Vienna’ story got an airing – and not by me! It was interesting to hear it told from the perspective of one of the main characters in the story.

And then yesterday, while I was in Geelong, I had lunch with my team mate Kim (this is Kim!) and not once in our hour long chat did we speak about diabetes. Not once. In fact, it wasn’t until I got up to leave and mentioned to the waitress that I would love to continue to sit by the fire, but had to rush off to give a talk, and she asked me what the talk was about, did the word ‘diabetes’ come up.

‘Oh. Is it about type 1 or type 2 diabetes?’ she asked. Kim and I looked at each other with surprise – and a little delight. ‘Well, in this case both. But usually we work with people with type 1 diabetes,’ I said. ‘Our waitress over there has type 1 diabetes,’ she continued. It’s possible that Kim and I squealed at that point. ‘I’m so annoyed that I need to leave now – I’d love to chat with her. But Kim here isn’t going anywhere!’ And out I walked. I hope they had a chance to catch up!

I love a good diabetes in the wild story!

Other things occupying my small mind this week.

Cards to send when you don’t know what to say

I love these! They have been all over my social media feeds. They are such a wonderful idea. Emily McDowell has created empathy cards for people with serious health conditions.

I love the one that says ‘I’m really sorry I haven’t been in touch. I didn’t know what to say’ because often that is the case. We don’t know what to say. But if we have a friend going through a tough time, it’s not about us or our awkwardness. This card shows that even though you feel clumsy with words, you are thinking of your friend.

This is my favourite – and probably most relevant to diabetes. Please don’t tell me about you grandmother who lost her limbs because of lemons. Okay?

Life gives you lemons

Numbers mean nothing on their own

I had a very cool Twitter exchange with the super clever Dr Rick Kausman after I tweeted a link to this terrific piece he wrote for The Conversation this week. Numbers (in this article’s case weight) only ever tell part of the story – and often not the most important part!

Quick! Time’s running out for MILES 2

Diabetes MILES 2 is about to close. Do it. Do it now! (Read about it. Read about it here!)

There is a place for Dr Google in our healthcare teams.

While seeking medical advice exclusively from Dr Google isn’t the best idea, there is no denying that the internet and social media are indeed a significant source of information that really can benefit people living with health conditions. I hear blogs are a good source of information and support. Apparently. So I’ve heard.

Have a read of this great piece from MD Joyce Lee. I think she gets it right when she says this:

Healthcare, wake up. It’s not the 1990s anymore. 
Social media, google, and the internet ARE medical therapy.

Dr House was wrong 

What do you know about Lupus? Dr House seems to believe that ‘It’s never lupus’, but actually, sometimes it is. I’ve grown up with an understanding of this autoimmune condition. My gorgeous mum has been living with it kicking its arse for more than 30 years.

Here’s some information to brush up your basic lupus knowledge. And considering that May is Lupus Awareness Month, now is a good time to get some facts!

 

Sorry - couldn't help myself.

Sorry – couldn’t help myself.

Taking a diabetes break

Well kind of. There are some lucky teens taking an artificial pancreas for a spin in the real world as part of a study being run out of Yale. Read all about it!

There will be no sleep

Next week is Diabetes Blog week. It’s gonna be huge!

Happy Mother’s day, Mum!

My Mum is brilliant. She really is. And when she sent me this text message bagging the paleo diet, she hit new levels of brilliance.

mum pete evans

Happy Mother’s Day, Mum. If I can be half the mother you are, I’ll be doing well. Love you. x

It feels like a Ray Charles kind of day.

Today, I travelled to Geelong to hang out with Kim and have lunch speak at the Barwon Region Diabetes Health Professionals Group about diabetes and language.

I have given lots of talks about the importance of language when speaking to and about people with diabetes. It is such an important issue and I am always pleased when I am asked to present on this topic.

When I was preparing for today’s talk, I looked over all the blog posts I’ve written here (and on other blogs too) about this issue and I realised that there were many. So very many.

There was this one – the post I wrote following the launch of the Diabetes Australia Language Position Statement.

There was this post where I asked if people consider diabetes a disability and if the word offends them in any way when referring to diabetes.

And this one where I took a couple of ward nurses to task for daring to use the words non-compliant and diabetic in the same sentence.

Also here is a post about someone calling me a diabetic. They really shouldn’t have.

There was this whole post that focused on the word ‘sufferer’ – still a word that I despise!

I discussed a lot about the importance of language specifically relating to diabetes, but I wanted to explore further today. I talked about the language of health, pointing to how I thought Healthy Weight Week missed the boat with the name of the initiative and also the language of food and of the ‘wellness industry‘.

The group was really engaged – lots of terrific discussions and questions and ideas being thrown around, which I love when I am presenting not only because it means less for me to do, but because I love to hear ideas from others and learn about what works for them. This was a really sensitive group. They were very switched on and understood that not only is language important, but the way they use it needs to be tailored to the person they are working with.

We also talked about language extending to more than just what they say. Their waiting rooms need to reflect the same sensitivity being demonstrated in the consultation room. I recalled the incident of the launch of the Diabetes MILES study where in the waiting room of a diabetes clinic was a horrid poster about foot care showing foot ulcers and amputations.

It was a terrific discussion and I am so grateful whenever I spend time with health professionals who are just so damn considerate and respectful when speaking about diabetes. And I am also grateful that they are seeking the consumer/patient/client/PWD (yes, we discussed that too!) perspective.

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.

No Diet Day

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.

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