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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
Today, diabetes can bite me. I changed out a perfectly good – and working perfectly – cannula this morning because it had been in for four days and I sometimes follow some diabetes rules.
Fresh out of the shower, I stabbed in my line and knew straight away something wasn’t right. I am more than used to (and expect) the little sting that comes with the introducer needle piercing my skin. But this one really hurt. And then when I primed one unit of insulin into the empty cannula it hurt. Really hurt.
So, I ripped it out. Which was a good idea! I present exhibit A:
This resulted in swear words galore because I am classy and a lady. I pulled another infusion set from the cupboard, ripped it open and shoved it in my skin. And again – ouch! I didn’t even bother to prime it – I just ripped it from my skin. Which again, proved a good idea. I present exhibit B:
Ripping this one out was fun. It bled. Down my leg and onto the floor. So I swore again (more classy, more lady) and cursed the diabetes gods and possibly stamped my foot. Actually, I definitely stamped my foot. And threw the useless thing across the room at which point the puppy thought it had a new play toy.
The next cannula went it without a hitch and is behaving itself. Third time lucky.
So, what did I learn from today’s exercise? Not much. Probably that I shouldn’t follow diabetes rules and should have left the four-day-old-slightly-manky-but-working-perfectly cannula in. Because nothing good comes from following rules. Yep. That’s what I’m taking away from this. Also, I need a cupcake.
Go away. There is nothing to see here today.
Instead, enter #IWishPeopleKnewThatDiabetes into your search engine and spend the day reading about the things we all want everyone to know about diabetes.
This is the initiative of Kelly Kunik from Diabetesaliciousness. But don’t read her blog today either. You can do that tomorrow.
Today it’s all about this hashtag: #IWishPeopleKnewThatDiabetes
Go!
I could never ever work in advertising. A combination of cynicism and disbelief at anything I ever see in an ad would make me a difficult employee!
There is a very real gap between the truth of diabetes and what we see in advertisements for diabetes products. I frequently find myself shaking my head in disbelief at the way diabetes is portrayed.
This is what a stomach using an insulin pump looks like. That is my stomach (apologies if you are eating, drinking or just looking). Those dots are the ghosts of infusion sets past in various stages of healing. There is also probably some tape residue stubbornly stuck to my skin. Pretty (gross), isn’t it?
#NoFilter. Obviously
This is what a stomach in a pump ad looks like. Magically, any hint of previous infusion sites have disappeared.
This morning, here is what my meter announced my BGL to be. (Hashtag: fuckoff)
This is what the reading on pretty much every box and poster of BGL meters looks like. (Hashtag: bullshit)
CGM graphs in real life look like the trajectory of rollercoasters with mountainous highs and cavernous lows, while the slick promotional materials show straight lines, nicely fitting in between the upper and lower alarm limits.
People in advertisements for diabetes paraphernalia are always outdoors, happy and rolling down hills, big smiles plastered on their faces. They wake up looking well-rested.
Real people with diabetes may spend time smiling and happy (I love rolling down hills – especially at this time of the year and getting all covered in Autumn leaves), but I’m putting it out there and saying that their glee is not because they have just done a BGL check. Unless the result is 5.5mmol/l. Each and every time. (See about meter photo. There was no smiling at that!)
I get it. No one wants to see my stomach on an ad for insulin pump therapy – that’s not selling units of product! But surely there needs to be a middle ground somewhere. I would like there to be an occasional BGL reading of over 15mmol/l on a poster for a meter. Because it happens. It’s not the end of the world and it doesn’t mean the meter is crap. And a stomach with a few pock marks from old infusion sets doesn’t reflect the quality of the infusion set. It reflects reality.
Diabetes isn’t pretty. It’s an ugly, scary and pretty un-fun thing to live with a lot of the time. That doesn’t mean that I spend most of my time in a ‘pity me’ funk, but I do admit – quite honestly – that it is shit at times. How about we aim for a bit of honesty and truth in diabetes advertising? Telling it like it is doesn’t mean we are weak or showing defeat. It’s just being authentic.
‘You bake a lot for someone with diabetes.’ These words came out of the mouth of someone not all that bright who may read this blog, but has clearly not taken on board anything I’ve ever written.
It wasn’t the first time that I have had people express surprise at my love of baking and baked goods considering that I have diabetes. I’ve even had other people with diabetes say they were told baking was an absolute no-no for the pancreatically-challenged when they were diagnosed and, as such, have never baked anything in their lives.
I do bake a lot – regardless of my diabetes state! I bake several times a week. On days when I don’t bake, I read cookbooks and plan what I’ll bake next. I bake when I am happy, sad, anxious, excited, content, angry. And I bake a lot when I am stressed because I find it to be calming, peaceful and satisfying.
My neighbours know when I am feeling particularly stressed because those periods involve baking EVERY SINGLE day which equals home-deliveries around 7pm of whatever is still warm out of the oven. I think the neighbours sneakily like it when I am stressed.
I love baking because it is reliable, predictable and practical. Mix the right quantities of the right ingredients for the right amount of time at the right temperature and you will, inevitably, end up with something beautiful and delicious. And as you get better and know how certain ingredients work with other ingredients, you can mix things up and be creative.
In other news – I need an apron.
Plus, baking gives me an excuse to make a mess.
Baking is reliable. Except for the rare complete balls-up, the results are exactly what you expect. The end product almost always looks more or less like the picture. If you start out making a cake, you will end up with a cake at the end of the process.
Baking is the exact opposite of diabetes! Diabetes is unpredictable and unreliable and most of the time, you have no idea how you ended up with whatever it is you ended up with. (Case in point: lunch of poached chicken salad containing zero carbs and a dressing of nothing more than olive oil and lemon juice, pre-prandial BGL – 7.8mmol/l; 2 hour post-prandial BGL – 18.9mmol/l.)
The unpredictability of baking only ever comes to the fore when bolusing for whatever it is that I’ve baked. Sometimes I get it right. Other times I don’t. It can be a little hit and miss. Correction boluses were invented for this exact thing! If you don’t like baking, that’s fine. But don’t let diabetes be the reason you don’t bake.
It’s ANZAC day this Saturday and I did a trial run the other day of my tried and true ANZAC biscuit recipe that I scribbled out in my recipe notebook a number of years ago. This is a fail-safe recipe and takes no more than ten minutes to throw together and then only a short time to bake. For those of you who don’t know what an ANZAC biscuit is, have a go! They are absolutely delicious and because they have oats in them, you can fool yourself into thinking they are a health food. Each biscuit (cookie) for those in the US has about 12 grams of carbs.
Diabetogenic 