Diabetogenic

Today…

November 12, 2014 in Awareness, Diabetes, Hypo, Lows, World Diabetes Day | 14 comments

Today I hate diabetes.

I am completely and utterly sick of the World Diabetes Day messages that are scrolling through my screen. I am over looking at posters and diabetes empowerment messages and I cannot be bothered being involved in the activities that are all around me. I don’t want to talk about it – which is actually really unfortunate as I am giving a Grand Rounds talk at the Austin Hospital today about life with type 1 diabetes.

This morning I am hypo-fucked after dealing with a low that would not quit. This is the sort of low that mocks and teases and is just plain cruel. And when it finally passes, glimpses and flashbacks plague my mind for the coming days, reminding me how vulnerable and scared I feel.

I needed help to manage it – and I absolutely hate making my lows someone else’s problem. Eventually, after a jar of jelly snakes, raisin toast and two glasses of milk, my BGL started to resemble something respectful and I was able to change out of my sweat-soaked PJs. Despite being in something dry and under a warm doona, I was chilled to the bone and shivered for an hour before finally falling asleep.

Today, diabetes made me break a promise I’d made to my daughter – a walk to school with the puppy. But what made me feel even worse was the way she nodded her head in acceptance – and understanding – of why I was breaking the promise. I hate that diabetes is part of my daughter’s life because of me. I hate that she understands diabetes. I hate that she ‘gets it’ when I tell her that I can’t do something because of my stupid blood sugar.

Today I hate diabetes.

Today, I feel defeated. Today, I desperately want to not be living with this condition.

Yesterday, I took part in Diabetes Queensland’s WDD social media campaign that asks people to share what ‘type 1 diabetes for me is….’ (#T1D4MeIs). Here is what I came up with:

Today, my poster would look a lot different. It would have just one word.

Today I hate diabetes. I don’t feel empowered. I don’t feel ‘in control’. I just feel sad. And scared.

Walking With Diabetes

November 11, 2014 in Advocacy, Awareness, DOC, Social media, Stigma, World Diabetes Day | 4 comments

My Facebook and Twitter feeds are full of diabetes awareness campaigns and it is only going to get busier in the next few days. World Diabetes Day is a global event, and around the world there is much going on to help get people talking and thinking about diabetes.

My favourite campaigns are those that strive to shoot down diabetes myths and one that is getting some well-deserved traction this week is Walk With D.

The aim of Walk with D is to help people without diabetes understand what life with diabetes is all about. But more than that, it hopes to address the misconceptions within the diabetes community too.

Diabetes myths are rife. Every day, I hear things that are simply not right about what diabetes is all about. It frustrates me; it angers me; it infuriates me – never more so than when it is coming from within our own community.

I am filled with despair when I see people with type 1 diabetes perpetuating myths about type 2 diabetes with incredibly destructive ‘type 2 bashing’. I don’t know how many times I’ve said the words ‘No one asks to get ANY kind of diabetes’, but believe me when I say if I had a dollar every time I’d uttered that sentence, I’d be wearing a new pair of Manolos almost every week!

‘Even within the diabetes community, there are levels of misunderstanding, misrepresentation, and mistaken messaging, often creating a divide where there should be a bridge.’

– Walk With D website

Help stop the stigma!

As with any successful social media campaign, it’s easy to get involved with the Walk With D campaign. Share your story and use the #WalkWithD hashtag. Make it personal and make it real. Visit the Tagboard on the Walk With D website to see what others are saying about their real life with diabetes. And share. Share. Share.

And if you need more of an incentive to get on board, Lifescan Inc will donate 100 BGL strips to Life for a Child every time the #WalkWithD hashtag is used during November. Get tagging, good people!

Everyone’s diabetes story is going to be different – the diversity of our community is actually one of its strengths! But we can surely unite in our aim to have diabetes spoken about respectfully and with courtesy. Surely we can bond over the fact that diabetes just plain sucks. Surely we can walk together with diabetes, united, with our heads held high and our arms linked.

Follow Walk With D on Facebook here.

And on Twitter here.

#Insulin4All

November 10, 2014 in Advocacy, Awareness, DOC, Social media, World Diabetes Day | Leave a comment

This Friday is World Diabetes Day which is a chance for diabetes to get some much-needed mainstream attention and awareness.

There is an absolute plethora of activity this week in the lead up to the big day and, as usual, there is much online activity. Social media has the potential to reach a lot of people quickly, easily and cheaply. I’ve been involved in several campaigns in recent years and am always keen to see what clever ideas people come up with to raise awareness of diabetes around the world.

This year, one of my favourites is about access to insulin. The Access Alliance has created a Tumblr to draw attention to the fact that many people do not have easy access to insulin and other management tools, diabetes education and support. It breaks my heart that in 2014, almost 100 years since the discovery of insulin, there are still many, many people who cannot afford the insulin needed to manage their diabetes. This campaign is asking people to remember diabetes is a global issue and for some, accessing the things many of us take for granted – insulin, test strips, BGL meters – is a huge struggle.

I think about this often – in fact, every single time that I walk out of the pharmacy with my 5 x 10ml vials of insulin to load into my insulin pump. For less than $40, I have the next three month’s supply of insulin in my hands to take home, and keep safe and cool in the fridge. I feel guilty when I bitch and moan about the fact that I had to make a phone call to order in the insulin because the pharmacy doesn’t keep it in stock. Really? That’s the burden I deal with when I need insulin? I have to make a phone call and wait 24 hours before popping in to get my prescription filled.

No one in this day and age should find accessing insulin – or any life-saving drug – a struggle.

So, get creative and make a poster. Take a photo and upload it to the #Insulin4All Tumblr. And then share it with everyone you know – not just people with diabetes. Preaching to the converted is really important because it strengthens the numbers of people advocating, but reaching out to the general community, making people aware of the issues, getting others angry at the inequity of access to healthcare is important if we are going to make change.

Excuse me…..

November 7, 2014 in Devices, Diabetes | 3 comments

‘Excuse me,’ I turned to my left to the man sitting next to me on the 7am flight to Sydney and smiled. ‘Yes?’ People were still boarding around us and I was killing time checking Twitter before being told to switch my iPad to flight mode.

‘Oh. I couldn’t help notice…’ He was looking at my hand which held my pump. I finished pressing a button to silence an alarm and hastily shoved the device back down my top, all the time looking at him. He paused and I waited for the question about what it was I had in my hand, or, perhaps, recognition. He looked flustered.

‘Um. I couldn’t help notice what you were looking up on Twitter. Did you go last night?’

He motioned to the stream I was scrolling through – all images and tweets of the previous night’s Rolling Stones concert at Rod Laver Arena. My smile got wider.

‘Yes!’ I said. ‘Were you there?’

He shook his head. ‘I have tickets for Saturday night at Hanging Rock, but I’m selling them to someone. It’s my best mate’s 40^th birthday, so…’ He let his voice trail off. ‘So, how was it?’

I started with ‘AMAZING!’ and went through every superlative I could think of, telling him how incredible the gig was; how amazingly the band played; how energetically Mick Jagger danced.

‘Damn,’ he said. ‘I was hoping you’d tell me that they were past it and it was terrible.’

‘I can lie if you want me to. But really – it was one of the best gigs I’ve ever seen!’ I then thought of something. ‘Did you say you have someone to buy your tickets for Saturday?’

‘I think so. I’ll find out later this morning.’

I reached into my bag and handed him my card. ‘Sorry for being so forward, but if, for some reason, your friend doesn’t want them, please call me. I’ll buy them from you.’

‘Sure,’ he said, tucking my card into his shirt pocket.

I went back to scrolling through the tweets and glanced back. He was still looking at me.

‘Um…’ he started. ‘Well…have a good flight.’

‘Thanks! I’m about to fall asleep. Clearly I don’t have the energy of the Stones – I’m exhausted after the late night.’ I smiled at him again, turned off my iPad and promptly fell asleep before the plane took off, waking just in time to hear the seatbelt sign being turned off. We were in Sydney.

It was the usual craziness as passengers jumped up, grabbed their bags and jostled to get off the plane. As my seat-mate reached up to the overhead locker to pull down his briefcase, I saw it. There, sticking out of his trouser pocket, was a pump line.

He turned in time to see me noticing it. He stopped for a moment before saying, ‘Well…See you later. I’ll be in touch if the tickets don’t sell.’

‘Cool. Good luck. Enjoy your friend’s 40^th – it better be worth it!’ And then, before he walked down the passageway, I said, ‘You’ve got my card.’

The highlight at the Stones’ gig was their first encore – You Can’t Always Get What You Want – because the Consort of Melbourne, conducted by one of my mates, provided the choral introduction. And here it is!

Everything’s coming up….

November 5, 2014 in Diabetes | 1 comment

For the last three weeks, ever since returning from overseas, there has been a constantly replenished bunch of roses on the kitchen table. They range from a blush colour through to a beautiful light orange and have a fragrance that hits you as you walk into the room. After a few days in the house, they have opened, blooming magnificently, and then, over the next few days, drop their petals prettily and gently at the base of the vase.

Along the fence at the front of the house is a row of stunning rose bushes. To give you an idea of my gardening prowess, I can kill a cactus. (Correction – I have killed a cactus.) But roses seem to be indestructible. In our old house, we had three beautiful Margaret Merril roses along the front fence with a gorgeous perfume that would stop passers-by. One – the middle one – was a wedding gift from one of my bridesmaids (showing extreme optimism on her part that I wouldn’t kill it within a week) and the other two were bought to plant alongside.

I love roses – especially old fashioned ones. I love the fact they are enduring – that once they have flowered, I can butcher them back to nothing and within a short time, they will be rewarding me again with their beautiful blooms. I love that it doesn’t matter how much I neglect them, they still grow and thrive. I love that while roses may not be the trendy flower of the moment, they are always so elegant and beautiful.

Recently, on walks with the new puppy, I’ve been paying much attention to the beautiful bushes on our street. There is every colour imaginable, some with a gorgeous scent, others purely decorative. There are arbours welcoming people into gardens and climbers decorating the period homes in the area we live. One house has the most stunning, overrun bush – almost a tree, actually – that I stop at each time we walk by. It looks like it has been there for decades and when it’s time, I intend to knock on the door and ask the owners if I can take a cutting.

Roses have an inextricable – and ridiculous – link to diabetes for me. Whenever I am pruning them, I inevitably stab a finger on one of their angry thorns and, whilst cursing the pain, use this as a perfect excuse to check my BGL. There’s never any point wasting blood.

When our old Margaret Merrils – which were standards rather than bushes – were being trained to grow and stand tall, they were always tied to their stakes with spent pump lines.

And of course, the Spare a Rose, Save a Child campaign beautifully juxtaposes diabetes and roses.

I’m not sure if it is the fairy-tale-like quality of the pricked finger and drops of blood, or the fact that it doesn’t matter what I seem to do – whether a tend to them diligently or ignore them completely – but the roses are still there. I’m not sure if it is the beauty that thrives despite the nasty thorns that lie underneath. But there is something about a rose that makes me think forever. Just how I feel about diabetes….

In full bloom on the kitchen window sill.

Jump on over to The Glow….

November 3, 2014 in Awareness, Diagnosis, Mental health, Real life | 1 comment

Today, a piece I wrote about diabetes-related eating disorders has been published on The Glow (which is Mamamia‘s health and beauty sister site.)

I’ve written before about this topic, and, following some research i did as part of a work project, have presented findings at conferences. The study we did focused on young women with type 1 diabetes. One of the things that kept coming up again and again was how many of these women thought that they were the only one manipulating insulin for weight loss and, as a result, felt ashamed and unsure of where to turn for help.

Help is available. But we need people to be aware of it. We need to be talking about diabetes-related eating disorders – often referred to as diabulimia. I am really pleased that The Glow has published this (they also published one of pieces during National Diabetes Week) and I think it’s great that this condition is being discussed in mainstream media.

Click here, have a read and share….

The joy – and privilege – of ageing

October 31, 2014 in Real life | 7 comments

I really should be careful what I read and where I read it! The other day I sat at a gate lounge at Sydney Airport crying as I read an incredibly candid piece on the Huffington Post that inexplicably told my story so honestly and accurately that I wondered if I had written it and not remembered.

And then I read this piece by Rebecca Sparrow on The Glow and again, floods of tears as I nodded at everything she wrote.

I remember one day sitting with a group of other women all around the same age and we were speaking about skin care products (and then we giggled about boys, plaited each other’s hair and painted our toe nails). I was the only one who had not been using so-called anti-ageing products for a number of years. Because that’s the thing – we’re meant to be anti-ageing and do things to turn back the clock.

I am forty years old. This is not something I feel the need to hide nor be ashamed of. I celebrated last year with a week of parties and lovely gifts. I wanted to celebrate this milestone – just as I do every milestone. Next month, I turn 41 and have every intention of celebrating that too.

Rebecca Sparrow writes that ageing and getting older is a privilege as she tells the story of a friend of hers who, at 22 years has been diagnosed with terminal cancer. This young woman is not going to be afforded the opportunity to age and get wrinkly and turn grey. She is going to die at an age where most of us feel completely immortal.

Ageing is a privilege – I understand that more and more every day. With our daughter growing up – she’s going to be 10 next month – I can easily measure time. We see how she has changed and how, with each passing month, she is becoming an incredible young girl we are so proud of. And we are so lucky to be able to watch this.

I am over the idea that ageing is something that we should hide from and do everything in our power to avoid. I am forty years old. I look older than I did when I was 17 and doing year 12, or when I was 25, or when I was 30 and pregnant, or even than I did a couple of years ago. Of course I do. And if truth be known, I really don’t want to turn back the clock – on how I look physically or how I feel emotionally. With age comes wisdom – it may be a cliché, but it is true. But even more – with age comes experiences and confidence and a sense of self that only seems to grow each year.

Ageing is a privilege. It is normal. And devastatingly, for some, they never will age.

Less than 100 years ago, being diagnosed with type 1 diabetes was a death sentence. Think about that for a moment. If I had have been diagnosed prior to insulin being available, I would have died before I was 25 years old. I never would have travelled, worked in a job that gives me incredible joy, spent so much time with friends and family, seen Tony Bennett live, learnt what an octothorpe is, watched the West Wing, attended my 20 year school reunion – or my 10 year school reunion for that matter, danced on the turf of the MCG as The Police sang, seen the Book of Mormon, read Harry Potter, gone to (and fallen in love with) New York City, met Oliver Jeffers, used an iPhone, gotten married or had a daughter.

My life would have ended before any of these things.

I want to look forty – I want every battle scar I’ve earned to be visible; every success – and every failure – to be shown on my face; the story of every victory and disappointment to be told. Because these are part of who I am and I am so, so lucky to be here to keep telling my story.

It’s a wonderful, fabulous, gorgeous long weekend! Dance to some Dire Straits – I have been!

The card of perspective

October 30, 2014 in Real life, Wellbeing | 2 comments

The other day, I was in a beautiful shop looking for a card to attach to the wedding gift we were giving my cousin and his bride when I saw this one:

Obviously, not appropriate as a wedding card – the artist had surely designed it with birthdays in mind – but I couldn’t help buy it for myself. Despite being one of the world’s loudest ‘It’s only a number’ advocates when it comes to diabetes numbers, sometimes I need a gentle reminder to not be so hard on myself.

This card is now pinned up in my study at home amongst all the other cards and postcards and photos and drawings and paraphernalia that I have accumulated over the years. And just like those other things, it reminds me to keep things in perspective.

The card is from Eggpress– have a look; they have some gorgeous stuff!

In defence of routine

October 27, 2014 in Diabetes, Hypo, Real life | Leave a comment

I am all for going with the flow. I’m happy to try out something new, and one of my least favourite things is when I hear people say ‘…but we’ve always done it this way‘. I like visiting new places and being challenged by new adventures.

But equally, I love a bit of routine in my day – especially on weekday mornings and at bedtime.

We have a morning routine that ensures everyone is out of the house dressed, organised, fed and watered and where they need to be. Our daughter heads to school with her lunch packed, notes signed, homework done and packed away, and her hat ready for playtime.

We do this every single Monday to Friday during the school term. Weekends and holidays are all over the place because we rarely need to be somewhere in a clean uniform by 9am.

Bedtime is the same. This is also all about routine. PJs on, teeth cleaned, hair brushed and plaited, and lots and lots of cuddles with last chats about the day. Then into bed for a spot of reading. This is followed by the added-extras. The kidlet tries to bargain another five minutes of reading time, sneaks her light back on when she’s told to sleep, and gets up for a drink of water. She says good night to her puppy about fifteen times and tries to find the cat, coaxing Cherry to sleep on her bed.

It’s the bedtime routine that we do pretty much every night. It works – even with the bargaining and distracting.

Last night’s cuddles were given over the phone because I am away for work overnight in Sydney. It’s the first time in two years that I’ve not done the bedtime routine (apart from the overseas travel and her occasional sleepover with friends) and when I hung up from her, I realised I’d forgotten to ask if there was any last thing she wanted to say to me. I told her I loved her, but I didn’t say ‘I love you mostest.‘ At which point we would both say ‘Not a word!‘ I’m out of practice with the one-night-away-from-each-other routine.

Actually, as it turns out, I’m out of practice with the one whole night away from home thing! I arrived in Sydney without any toothpaste and three strips for my BGL meter. This was remedied with a quick visit to an NDSS pharmacy (for both strips and toothpaste). There were three jelly beans languishing around the bottom of my bag which weren’t going to be particularly helpful if I went low, so I popped into the convenience store across from the hotel to replenish hypo supplies.

I also forgot to pack spare diabetes consumables. Of course, I have my contingency bag that has one spare line and reservoir. But none of these spares helped when I ripped (and I mean ripped – blood everywhere!) my two day old sensor from my skin as I got changed.

Now, this wouldn’t have been a problem if I was not travelling alone. But being on my own without my CGM makes me nervous. A phone call to a friend living in Sydney who made a mercy dash into the city with a spare sensor has made me feel so much more relaxed.

I don’t wear a sensor all the time, but I do make a point to if I am travelling – especially if travelling on my own which I’ve really not done for some time. Ordinarily (at home), if I ripped a sensor out, I wouldn’t bother putting one straight back in. But I knew that I’d have a really restless night (of no sleep) without the security blanket that is an alarming-if-low CGM.

I used to do a lot of overnight travel and I had it just right. I had the packing perfect, I timed line changes just right and I had a mental checklist that I would work through with great skill and precision. I rarely – if ever – forgot anything.

Routine gets a bad wrap because it’s considered boring and unadventurous. And that may be the case. But the stress that comes from being without the necessary diabetes stuff – or having a really lousy hypo that could have been prevented with a CGM – is far more boring. And quite frankly, these are adventures I can do without!

Not so invisible

October 27, 2014 in Devices, Real life | 2 comments

‘What’s that?’

I was standing at the basin in the bathrooms of the restaurant that was the location for my cousin’s wedding and spun around to see who was speaking to me. I looked down and saw a little girl – maybe four – pointing at my chest.

I followed the direction of her outstretched finger and noticed that the tubing from my pump was slightly visible over the top of my dress.

‘Oh, that’s just some tubing from a machine I wear that gives me insulin. I have diabetes.’ I looked at the little girl’s mum and smiled, then changed the subject and told the little girl that she looked as though she was having a wonderful time at the party playing with the other kids. She nodded and said yes, then grabbed her mum’s hand and they walked out of the bathroom.

I stood there, looking at myself critically as I tried to tuck the pump line back into my bra. Stubbornly, it kept jumping out until I pulled my pump out and turned it upside down before depositing it roughly back down the top of my dress.

I kept staring at myself and ran my hand across my stomach where I had spied the slight bump from my CGMS sensor. I felt the sensor and turned slightly to the side so I could see just how obvious the lump was.

I sighed.

I’d felt really good when we’d piled into the car in the morning, all dolled up, looking rather lovely. I thought my dress got the ‘fancy frocks’ directive on the invitation just right! But right then, I felt pretty average. I felt uncomfortable. And I wished that I didn’t have robot parts that struggled to remain contained in the beautiful and very fitted dress I was wearing.

Right then and there, my invisible illness didn’t feel invisible at all. In fact, it felt as though I had a huge flashing neon sign above my head announcing to one and all that I had diabetes.

I took a deep breath, made sure my pump was secure and ran my hand over my sensor again, flattening out my dress around it as best I could. I reapplied some bright red lipstick avoiding looking myself in the eye. I turned away, walked out of the bathroom and joined the wedding. It was a beautiful celebration.