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Baby, it’s cold outside. It really is. I am shivering my way through most mornings, cursing the cold and complaining about how far away Summer is. Which is all really weird because I think the coldest it’s been is about 7 degrees (Celsius), and a mere few months ago, I was delighted and delighting at the New York snow. I think that’s what I need. Snow in Melbourne. Snow makes the cold worth it.
Anyway, sit somewhere warm and have a read at what I have been checking out lately.
She quits helmets
I’ve made no secret of the fact that I think Sarah Wilson is a fool. She has done nothing to alter that opinion with her rant and rage against mandatory helmets for cyclists. She wrote this at the end of last year and it has resurfaced, once again showing how irresponsible and downright stupid she is.
If I had a superpower, it would not be flying or invisibility or a magic unicorn. No. It would be to mute people who are dangerous; people with D-grade celebratory status with a following who sprout harmful rhetoric. Sarah Wilson would possibly be first on my list.
beyondblue
Yesterday, this media release from beyondblue had me cheering. Raising awareness about men’s health – in particular men’s mental health – is a tough gig and beyondblue are doing a damn fine job trying to cut through.
Inside Out
When I saw the preview for the new Pixar film, Inside Out, I was so excited. What a gentle, fun, and enjoyable way to talk about mental health with kids. I couldn’t wait to see it. I still can’t. Aaron took the kidlet and one of her friends to see it while I was in the US and they all thought it was terrific. And it has sprouted some really interesting discussion about the topic.
I love this article which talks about the importance of having a strong female character as the protagonist of the film who is not a princess.
Jenna from the Block
A few years ago, Jenna and Josh were contestants on the Block. Josh was diagnosed with type 1 diabetes a couple of years ago, and this moving story from his wife, Jenna, is doing the interweb rounds here at the moment. Thanks for raising awareness of diabetes, guys!
Up your nose
Glucagon injections are not fun. They are not fun for the person who is jabbed (the jabbee?)– mostly because it means that they are having a nasty hypo that warrants being jabbed – and they are not fun for the person doing the jabbing (the jabber?).
Under what is usually an incredibly stressful situation, the ‘jabber’ has to open the little orange box, draw up things into a syringe, shoot it out again, mix it up and then inject it.
Not. Fun.
So, it is with great interest that I have been reading about the trials of inhalable glucagon. Read about it here.
Friends like this
My friend Alecia is awesome. She is uber-talented (her jewellery designs are stunning and her lighting designs a marvel) and is so much fun to hang out with – even if she makes me drink things that taste like orange bathroom cleaner.
We hung out recently in NYC, where she took me to a gorgeous place for dinner and we ate the best Brussel sprouts ever. And then I took her to hear some jazz where she made guitarist Mike Stern kiss me three hundred times so she could get the perfect photo. I didn’t complain. Neither did he, actually.
She is also slightly crazy. But she is crazy for a cause which, I guess, makes it kind of okay. Next month, she is going to be riding 100 miles on a bike. In our language that’s 161 kms. In whatever language, that’s a long way.
If you can, throw her some coin. All money raised is going towards finding a cure for diabetes. Which she has had for 36 years, and since 2001, has raised over USD$350,000 for a cure for type 1 diabetes. I did mention she’s awesome right?
Music and words
Most weeks, I post a link to music I have been listening to. This is fun. And embarrassing at times. But I also think that I should start to post links to some of my favourite JK Rowling quotes because the number of times she beautifully and succinctly manages to say something that I have been trying to bash out is startling.
For all the blog posts and talks I’ve ever given on the importance of language, I could have simply said this.
Remedy injury. Always.
Gallery
One of the best films ever is the Peter Sellers’ classic The Party. A couple of years ago, we bought our first ever Josh Agle (known as SHAG) print which is a tribute to this fabulous film.
It was the first in The Party series. Somehow, we completely missed the release of the second print (and now can’t find one anywhere!), but a few weeks ago, when visiting Outré Gallery, we saw and bought the third.
Last night, after a couple of hours of lining things up, measuring things, banging hooks into walls (very satisfying), we finally have our SHAG gallery done.
It looks spectacular and this photo absolutely doesn’t do it justice – mainly because it was really difficult to get the whole wall in one photo. Those larger photos in the middle are each about 150cms wide. Nonetheless, here it is! And we can’t stop looking at them!
Drink Nutella
I mentioned it’s cold, right? Well, here is a nice way to warm you up. Nutella hot chocolate. Just because.
I was low on Saturday. For hours and hours of Saturday. I cannot tell exact numbers for the exact time because on Friday my CGM sensor died and I removed it ceremoniously (i.e. ripped it off in the shower) and didn’t replace it. A few BGL checks give me some information, but not a complete picture. Because that’s the imperfection of modern BGL meter technology.
At about 6pm as the kiddo and I were sitting down to our 145th 6th episode of the Gilmore Girls for the day and eating home-delivered noodles out of a box I started to feel crapola which is the a highly technical term for ‘jeez, I’m low’.
BGL check showed that I was about 2.7 on the crapola scale, so I downed a juice box, and ate my way through my carb-laden noodle box. That should have fixed it. Several times over. But it didn’t.
At about 10pm when I was thinking that an early night was in order (because: effing jet lag) I started getting ready for bed and realised that I was low. Again. Or still. I wasn’t sure. Another juice box and I figured I’d be right.
And then an hour later, warm in bed, reading some Truman Capote, I was still sitting just under 3.0, so I drank more juice. By this stage, I was pretty sure that spikes were about to start growing out of my head. 
Around 12.30am when Aaron got home from his gig, I was sitting up in bed, munching jelly beans.
‘Hypo?’ he asked.
‘Yep. For hours.’ I said. ‘Hours and hours.’
This was one of those lows that is so non-eventful. It is what healthcare professionals and all diabetes books refer to as a mild hypo because at no time was I in any way afraid that I couldn’t manage it myself. I just munched on or chugged down glucose, willing my BGL to get moving upwards.
I didn’t feel scarily low – there was no profuse sweating or shaking or numbness. I felt slightly woozy when I stood up or moved suddenly, but nothing scary. My heart rate didn’t increase. I didn’t feel out of control. I wasn’t afraid.
And it was all for no apparent reason. Hard as I tried, I couldn’t explain why the low just would not budge– I’d not done any sort of prolonged physical activity or forgotten to eat. I’d barely bolused for my uber-carb meal.
If I had sensor in, the squiggle would have been pretty straight for hours and hours and hours – frequently dipping below the low-alert level into the nasty red part that would have had alarms squealing and me swearing.
But all I have are a couple of BGL checks with numbers in the 2s and 3s until I decided I was sick of looking at numbers in the 2s and 3s so stopped checking. Plus I was feeling better.
The next morning, there was no reminder of the night before. I woke up without a hypo-hangover. No headache. No screaming high BGL. In fact it wasn’t until I looked over to my bedside table and saw the empty juice boxes that I remembered. I got up and collected the remnants for the recycling bin. Just another day. Another night. Another hypo. Nothing to see here. Boring as all get out.
David Sedaris wrote this book:
It came out a while ago (back in 2013), and as with all things Sedaris, I bought it, read it in a day and laughed out loud so many times and so loudly that I annoyed everyone around me.
I first discovered David Sedaris back in 2008. I was standing in line at (the now-defunct) Borders in Carlton. His Holidays on Ice compilation was conveniently placed on the counter, just ripe for an impulse buy. It was a few days before we were about to go to Europe for Christmas, so reading about Wintery holidays seemed like a good idea. I bought it and tucked it away in my carry-on luggage to read on the flight.
I started the book about two hours into the flight and very quickly learnt something about David Sedaris’ writing: it should not be read in close confines. It should not be read when there are people around you wanting to sleep. It should not be read when your husband is sitting next to you and keeps asking ‘What’s so funny? Let me read it.’
Eventually, with me laughing so hard that my sides hurt, unable to see for the tears running down my cheeks, Aaron took the book from me to see what all the fuss was about. His response was similar.
Our absolute favourite story from this compilation is Six to Eight Black Men, which originally appeared in Dress Your Family in Corduroy and Denim. I am not even going to start to tell you what it is about, but I found this gorgeous little video that gives you some idea.
In recent years, David Sedaris has visited Australia. In 2010, when we heard of his upcoming tour, we booked tickets, initially baulking at the $70 ticket price. Seriously? For a book reading? We could go to Readings any week of the year and hear someone give a reading of their book. For nothing. And get a free glass of wine.
However, we forked out the money – along with thousands of other Melbournians. His tour sold out. There was not a spare seat in the Melbourne Concert Hall. And it was brilliant. Hearing him read aloud was mesmerising. Even the stories that I had read – some of them several times – were completely different when read in his very distinctive voice. It was a thoroughly enjoyable night!
We bought tickets as soon as his 2014 tour was announced. Again, the Melbourne event sold out. Again, it was an absolute delight hearing him read not only his short stories, but also diary entries of often mundane occurrences.
Anyway, back to his latest book. When we saw him last year, as soon as he stepped off stage, Aaron and I ran out to the foyer to wait in line for him to sign our copy of the book. I desperately wanted to know what the title meant. There is not a single reference to diabetes other than the title. What did it mean?
Apparently, not much at all! When it was my turn to chat to him, I asked my pressing question. ‘Why ‘exploring diabetes’?’ As it turns out, it came from a book signing – just like the one he was doing then! – when a woman asked him to write a dedication in the book for her daughter. She wanted him to write something about her daughter needing to ‘explore her feelings’. He refuses to write what people ask him to, so he kept the word ‘explore’ and instead wrote ‘let’s explore diabetes with owls.’ She was not pleased. I doubt he could have cared!
He asked me why I was so interested in the title. ‘I have diabetes,’ I said. ‘I was hoping that I would read your book and find the secret to diabetes.’ I smiled at him. ‘I didn’t. But I loved the book nonetheless.’ He handed me back my book with his signature and a little scribbly drawing. ‘Thank you,’ I said.
‘Oh, before you go. I have something for you.’ He reached into a bag under his desk. ‘You can have some hotel shampoo and conditioner. Because you have diabetes and are special.’
I laughed loudly. ‘Thanks! See – something good DOES come from having diabetes.’
The day I got my grubby paws on this book.
I’ve been singing this song all day thanks to one of my Kate Spade bangles that has ‘You put the lime in my coconut’ written in gold. This version, whilst not the original, is great. Because Muppets. Have a great weekend. (And read some Sedaris!)
It’s fan girl here again. I want to talk more about Bill Polonsky’s talk at the ADA meeting – specifically this:
This point had me thinking. A lot. We speak frequently about how diabetes is an invisible illness. And it is a lot of the time. This piece I wrote for The Glow last year really resonated with a lot of people with diabetes who thought that it was such a good representation of what life with diabetes is about that it was shared almost 4,000 times.
It’s invisible – we can’t see it. We rarely point to it. And you can’t walk down the street identifying the people with diabetes. (Although I like to think we sparkle a little brighter than the average person and have an aura of brilliance surrounding us, a rainbow above our heads and ride around on a unicorn. Just me?)
But I’m not sure that as a person with diabetes that I have ever weighed up the management aspects of diabetes against the (for want of a better term) return on investment.
ROI is such a big thing in our world. We expect some sort of return or reward for work we put in. Whether it be in our friendships or relationships or work or play. We do something and there is an underlying need to see something come back at us. We seem to expect acknowledgement or compensation and pats on the back for what we have put in.
There’s a problem with that expectation when it comes to diabetes. Because sometimes it doesn’t matter how much effort we put into our diabetes, the ROI is negligible. Not always – sometimes we see results and we can point to our efforts for the improvements. But sometimes – and unfortunately, a lot of the time – we get nothing back.
That all makes so much sense, so I’m not sure why I have never seen that before. Bill Polonsky’s point was such an ‘Aha moment’ for me. I went away and kept thinking about it and started listing the reasons I give for eliminating self-care tasks of diabetes. And they all came down to versions of ‘Because it doesn’t matter what I do, I still get crap results.’
Is it an easy excuse? Maybe. But I ask those without diabetes this: how inclined would you be to keep doing something if you got nothing back in return? It’s why people leave jobs, or relationships or other situations. Not feeling that you are getting something in return for your work? You can walk away.
Of course, we can’t leave diabetes. So how do we keep going – keep up with the hassles of self-care – when the ROI can be so minimal. I don’t have the answers to that one, I’m afraid. I wish I did. I really do.
Throw back Thursday to this post from a few years ago with a meme – 30 Things About My Invisible Illness You May Not Know. Most of it is still applicable today.
Whilst I am not supposed to consider my iPhone my primary care physician, today I am taking advice from it.
And adding coffee. Mainlining coffee. (File under #JetLagSucks.)
‘Are you here for work?‘ It was just after 7am in LA, and the border security officer looked tired. He studied my passport, holding it up, comparing the photo with the even-more tired-looking, and rather dishevelled, person standing in front of him.
‘Yes. For a conference in Boston.‘ I said, trying to smooth my hair.
‘Oh, the diabetes one?’
‘Yes. That’s right.’ I said. My flight from Melbourne was full of people attending the ADA conference. I know this because I knew half of them. Plus I kept hearing snippets of conversation with ‘diabetes’ being thrown around.
‘My mum (mom!) has diabetes. Type 1. She should go.‘ He said. He flipped through my passport. ‘How long are you here for?’
‘Only for the conference and then three days in New York. I’ll be home in nine days.’
‘That’s not long after travelling so far,’ he said to me.
I smiled. ‘You’re so right. But I’ve left my family home this time. So I don’t really mind only being away for a short time.’
‘Enjoy the conference.’ He stamped my passport and was about to hand it back to me when he looked at me again. ‘Do you have diabetes?’
‘Yes. I do,’ I said. ‘I have type 1. Like your mum.’
‘Do you use a pump?‘ he asked.
‘Yes. And I’m wearing a CGM as well.’
‘My mom needs to talk to you,’ he said. ‘You look healthy. Keep it up.’ He passed me my papers.
‘Thanks. I hope your mum is okay,’ I said, noticing the concerned look on his face – one frequently worn by loved ones of people with diabetes. He nodded and I walked off, heading towards the baggage carousel.
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!
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.
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?
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.
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.
Happy Mother’s Day, Mum. If I can be half the mother you are, I’ll be doing well. Love you. x
