Category Archive

The Blue Circle

To me, the blue circle that is the symbol of World Diabetes Day is such a perfect representation of diabetes. It’s about diabetes awareness, diabetes unity and a symbol of hope. But the circle shape also represents some of the more difficult aspects of diabetes, too.

Diabetes is a cruel, cruel monster sometimes. There are many things about living with this condition that make me want to pick up my bat and ball and go home. (Or pick up my pump and BGL monitor, throw them in the bin and pretend I don’t have diabetes.)

For me, the cruellest, meanest, nastiest thing diabetes does is hypo unawareness as a result of a ‘great’ or in-range HbA1c. This is diabetes at its most mocking.

Many people who have lived with type 1 diabetes for some time will experience impaired hypoglycaemia awareness – for economy of language, let’s refer to it as we all do, hypo unawareness.

As someone who on occasion has experienced this, let me tell you that it’s terrifying beyond belief. It can be paralysing and makes me second guess every single diabetes decision I make. And those decisions add up to dozens each day.

So, how is hypo unawareness ‘fixed’? Well, it’s recommend that we remedy our unawareness by running our sugars a ‘little high – say 10 or 12’ for a few weeks and ‘avoid hypos’. I have always marvelled at this advice on a number of levels.

Firstly, the one thing I remember most about my diagnosis is the photos of amputated limbs, threats of blindness and dialysis, and being told I needed to have my kids before I turned thirty. Since that day, every time I see a double-digit number on my meter, I see an amputated foot. So, telling me to ‘run a little high – say 10 or 12’ isn’t a matter of accepting those numbers as just numbers. I see them as my toes falling off.

Also, surely, ‘running a little high – say 10 or 12’ is the same as saying ‘run your sugars a little perfectly – say 4 or 5’. If it’s as easy as picking a number and sticking to it, then surely we’d all just pick 5.5mmol/l and go with that all the time, posting each and every result to Facebook and Twitter.

And finally, the term ‘avoid hypos’ suggests that it’s an easy thing to do. Seriously, if it was that simple, I’m not sure too many people with diabetes would keep playing the blood sugar limbo that is ‘how low can you go?’

Often, the appearance of hypo unawareness coincides with periods of what is often termed ‘tight control’ – and often a ‘good’ HbA1c. Ah, the HbA1c – the number that manages to sum up a person with diabetes’ worth. How many people dread getting their A1c result? How many people avoid having their A1c checked because they are afraid of 1. the result and 2. the response this will elicit from their health professional?

My hand is waving highly in the air for all of those. I am terrified by that number. And I have an endocrinologist l who doesn’t attach a moral compass to numbers – to her, it’s a piece of information which we can work with. Nothing more, nothing less. (I do love her!)

But I have been trained to encapsulate my worth in that little number. When I was trying to get pregnant, it couldn’t be low enough for me; whilst I was pregnant it needed to be steady and unreasonably low, and now, to stop those images of complications flying into my head, it needs to be below 7%.

Is it? No, right now it’s not. The pat-me-on-the-back A1cs I achieved whilst pregnant were the result of extreme anxiety, checking my BGs around 15 times each day and responding to each and every number I saw. And seriously nasty hypo unawareness. Sure, I delivered a gorgeous healthy little girl, but for the whole pregnancy the number 11 not only meant ‘toe falling off’ but also ‘congenital deformity – bad mother!’

The frustration about diabetes is that the harder we work the more things we have to do. A great A1c often equals hypo unawareness which means ‘running a little high – say 10 or 12’ which means an increased A1c, which means complications….and so the circle of diabetes continues.

I know how this circle works, and what it means to me is that I can’t do ‘A’ (have a ‘good A1c) without it causing ‘B’ (hypo unawareness), the remedy of which is ‘C’ (run a little high) which will lead to ‘D’ (complications). When we are in the midst of learning about diabetes, the equation is never presented to us. Each letter is discussed in isolation, never as a result or cause of something else.

There has to be a better way. If only I knew what it was.

Oh, the judgement, sideways glances and assumptions I’ve encountered over the past week about the diabetes shortcuts I take. Seriously, if there was a diabetes heaven, St Peter wouldn’t be letting me in. Apparently, I am a ‘bad, bad diabetic’ in so many ways. The diabetes police have been making that very clear.

Interestingly – and not surprisingly – none of that judgement has come from other PWD. Instead, I’ve received understanding nods and similar tales. Extensive polling (N=4) has shown that my short cuts are pretty typical.

A discussion about lancet devices in a meeting the other day had me wondering whether I should curl up under the desk and hide, or admit to my reality. Which is this: I check my blood sugar somewhere between six and 12 times a day. I don’t change my lancet every time I check my BGL. I don’t change it every day. Damn, I don’t change it every week. I change it when the little pinch that usually accompanies the lancet going in turns into pain resulting in expletives.

When it comes to pump line changes, I am clearly not the model pump user. I don’t do a full line and cartridge change every three days. I refill my cartridge and sometimes reuse the same line when I’ve got a new cannula in. And sometimes the recommended three days stretches to four or five. I make an educated call based on the fact that there is no pain or redness around the site, and my BGLs are not climbing into the stratosphere.

I can explain in one sentence why I take these shortcuts: It makes things that little bit easier.

Don’t think for a minute that I don’t know that it is recommended that I change my lancet each and every time I check my BGL.

And I am very aware that it’s advised that I change the cartridge in my pump every time it runs out of insulin.

Diabetes is boring. It is tedious, dull, dreary, monotonous, mind-numbingly tiresome. The Groundhog Day that is diabetes never ends. And I live it every day – without Andy McDowell’s gorgeous curls.

I make no excuses for taking short cuts where I can. I make no apologies for saying ‘that’ll do’. Because I am actually doing a pretty damn fantastic job, really. Even if the numbers aren’t perfect, even if there are days when that number of BGL checks is below what I’d like, and even if there are days when I wish diabetes would just. Freaking. Go. AWAY.

It’s never enough. It seems that the positive things I do (regular BG checks, counting carbs, bolusing insulin, basal checking) get ignored by the judge(s) and jury because of the short cuts I take; the short cuts which really aren’t negatively affecting my diabetes management. I could argue that the short cuts are actually positively affecting my management, because the tiny steps I save make the monotony that little bit more bearable.

When is it enough? When does the judgement from others and the guilt from ourselves disappear? What does it take for ‘that’ll do’ to become ‘that’s brilliant’?

Over at the Diabetes Australia – Vic blog today I write about 11 years of being connected. It’s my pumpiversary. (Not a real word, but fun anyway!) Read about it here.

Being allergic to gluten is the new black. Apparently. Just about everywhere I go, I hear people say they ‘can’t eat gluten. It makes me feel bloated’.

My favourite bit is when they next say ‘I know EXACTLY how it feels to have diabetes and not be able to eat sugar. When I eat a piece of bread containing gluten I get bloated. I feel really uncomfortable.’ Usually I ignore them whilst I mentally picture myself strangling them until they admit they’re stupid.

The other day I forgot. I snapped ‘actually you don’t know AT ALL what it’s like to have diabetes. I do. I have it. And I can eat sugar. And your perceived little bit of discomfort when you eat bread? Believe me; it’s NOTHING like living with diabetes’.

A couple of years ago, we held a diabetes and coeliac information session as part of Diabetes Australia – Vic’s World Diabetes Day activities. Prior to this event, I had only a basic understanding of coeliac disease which basically consisted of me dutifully having a screening blood test every couple of years which, fortunately for me, has always come back negative. I was fascinated to hear about just how meticulous people with diagnosed coeliac disease have to be in their avoidance of gluten. Different toasters…different tubs of margarine. A crumb of gluten-containing bread can cause symptoms.

After this information session, my tolerance of people being ‘gluten intolerant’ went from about 1.2 out of 10 to, oh, I don’t know, minus one squillion.

At Christmas last year, I sat at a table laden with the most incredible, delectable food imaginable. Everyone in the family had contributed their specialty. A veritable feast! ‘Where’s the gluten free bread?’ someone asked. My head snapped around to hear who had asked that question.

Now, my family collects autoimmune conditions as others collect china cats, so I thought that perhaps someone had been diagnosed with coeliac disease. ‘I’ll have some of that when you’re done’, said someone else. ‘Me too. I get bloated when I eat wheat,’ said another. ‘Does everyone here coeliac disease all of a sudden?’ I asked, trying desperately to keep the contempt out of my voice. I don’t think I succeeded, judging by the sideways glance my sister threw my way. ‘Yeah. Maybe. Well, not diagnosed, but you know, I feel bloated when I eat gluten,’ said one.

There were general sounds of agreement from three others at the table. “Oh yes,” said another. “I never eat bread with gluten.” I noticed, however, that she ate more than a few of my mother’s amazing zippoli (Italian donuts). Ah – so it’s an intolerance that chooses what it can eat. I want that! I want diabetes that reacts by sending my BGL out of range for no apparent reason only when I eat spinach. On a Tuesday. In months ending with an ‘e’. It would be great to pick and choose like that!

Here’s the thing. If people really, legitimately feel that eating something upsets their digestive system, see a doctor and have it tested. Swanning around claiming to be allergic to things or being intolerant of certain food groups minimises the seriousness of those who have life-threatening allergies and those who have conditions where food really is a consideration.

First world, bourgeoisie problems! (Grumpy rant over.)

Information about Coeliac Disease can be found here.

In October last year, I went to my twenty-year school reunion. I have no idea where the last twenty years have gone. If you ask me, I’ll still try to convince you that I’m really 23 (not fooling anyone, really!), but the truth is, it was twenty years ago that I last donned the Smurf-blue uniform that I wore for six of my teenage years.

I walked into the room where about fifty of my former classmates stood – chatting, catching up, squealing ‘you look exactly the same’ (liars – the lot of us!) and giggling at forgotten stories of mischief and misadventure.
I was greeted in one of two ways:

1. ‘Do you still play the flute?’ (Followed by admonishment when I cheerfully answered ‘nope’!)
2. ‘You are so brave!’ Huh? Then I realised that it was Facebook friends who commented on my apparent braveness. They’d been reading my blogs.

I tried to dismiss the diabetes chatter and change the subject. Because that time is my life BD – before diabetes. It’s a time where I didn’t jab my finger ten times a day, where I didn’t do super-smart calculations to work out the carb content of food (although thanks Mr Tossilini – your maths classes paid off after all!) and where I didn’t know what an endocrinologist was. It was a time where visiting a doctor was because I had a throat infection and I visited the pharmacy to buy lipstick, not insulin.

School days were filled with complaining about homework, stressing about essays, and growing up and through those awkward teenage years. It was when I was trying to get an idea of who I was, who I could be, who I wanted to be. Including diabetes to that time in my life would have added a complexity that would have been one more thing to fumble my way through.

Of course when I am at work, it’s all about diabetes. I get wheeled out as the consumer (or as I refer to it, the ‘here’s one we prepared earlier’). And that’s fine. It’s part of the job and I am beyond honoured to be asked to speak from a living-with-it perspective. I take it very seriously.

But in a room full of people who know me as the nerdy flute player, I don’t want to be known as the diabetes advocate.

I had such a great night with my schoolmates. Six years of shared history, shared detentions, shared being yelled at for daring to walk on the Convent lawn, shared laughing at one teacher who showed up to school one day with only one peacock-blue eye made up makes for a fun night.

My life BD was a different life. I know that the carefree and blithe nature of that time was partly because I was a teenager. The most pressing issue was whether the cute boy on the Glenferrie Rd tram did or didn’t notice that I was wearing my hair differently.

It was fun, so fun going back to that time. At the reunion, as I caught up with my friends and giggled like a teenage girl I forgot. About the pancreas that stopped working; the pump I was wearing, hidden down my top; and that as I ate, it was because I wanted to, not to stop me going low. The time BD seems like a long time ago. But I caught a glimpse of it that night. And I realised how much I miss it.

Strength and Kindliness

This weekend, my daughter was invited to a birthday party at an aquatic centre. It was one of those annoying kids’ parties where the parents are expected to stay (rather than do the drop off and then bolt to a local cafe with the other parents for a couple of hours of either latte or wine sipping – no judging, please).

“Got your bathers? Are you getting in?” someone asked me.

“Ha! No. I don’t own a pair of bathers!” was my response.

And it’s true – I don’t own a pair of bathers. I can’t remember the last time I got into a pool. The thought of being in bathers around others gives me nightmares. There are parts of my body that I take great lengths to cover up, and lumps and bumps are definitely not for public viewing. I see it as a community service – no one needs to see my knees!

I know this is ridiculous. My body does all it’s meant to do – it gets me up and about; it conceived, grew and produced a child; it allows me to work, play and live and it supports me as I teeter around on ridiculously high heels. It does everything it’s meant to do.

And yet, when I think about my body, all I can see is the problem areas. I spend a lot of time sucking in my stomach and being beyond critical.

I am also conscious of the fact that there is a seven year old girl in my house and I am already hearing stories of her friends commenting on their bodies. Positive role modelling is important and I try to do that by never complaining about my body in front of her, only ever referring to her body in terms of health and strength, and never commenting negatively or positively on other people’s bodies. We don’t have trashy magazines in the house, we don’t watch TV shows about weight loss and there is no praise or discussion of celebs that shed their baby weight in three minutes flat.

A couple of years ago, I joined a women’s only gym. There was the ‘inspiration wall’ where we were meant to put a photo of how we wanted to look after we ‘got in shape’. There was photo after photo of size 6 models in bikinis.

Each time I swiped my card at the gym, one of the perky assistants would look up and say “Where’s your inspiration photo, Renza? Who do you want to look like when you reach your goals?” I can still remember the looks of disbelief when I brought in my photo, a picture of a healthy cardiovascular system. “That’s my goal,” I said. “Health.” My photo never made it up on the wall.

Generally, conversations about bodies are about beauty. It’s rarely about health. How do we change the parameters for these conversations?

I don’t have the answers to this issue. It is so complex and my own personal situation is fraught. I am not happy with my body. Does this mean I have body image issues? I worry about putting on weight for shallow-I-want-to-wear-that-dress reasons, but also for health reasons. I know how extra weight affects my diabetes. I know how diabetes affects my weight. I also struggle with the fact that when I do try to exercise, I hypo. And need to eat. It frustrates me beyond belief!

There is some great information out there about diabetes and body image. But I think it focuses on the extremes. And whilst it’s incredibly important to provide information for those living with both diabetes and an eating disorder, we need to find ways to speak about how we feel about bodies when the situation isn’t so extreme. We need to speak about these issues without being judged, told to ‘just get over it’ or given a pop-psychology lecture about taking control of our destinies (I may have lifted that last line from The Biggest Loser website. Or not.)

Does the first step for me involve biting the bullet, buying a pair of bathers, putting them on and heading to the local pool with my daughter and splashing around with her? Trying, desperately trying not to feel self-conscious. And I need acknowledge the great things my body has done and continues to do. And somewhere in there find acceptance.

More information?

Read the National Diabetes Services Scheme Eating Disorders and Diabetes information booklet here.

Eating Disorders Foundation of Victoria.

This post is my January entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information here.

This month, the topic is: What is the one thing you are looking forward to in 2012? (diabetes related)

Who makes New Year’s resolutions? And who makes them expecting to keep them? Certainly not me!

Diabetes-related resolutions are all-too easy to make:

‘This year, my A1c will get to below 5.5%.’

‘No more chocolate cake for breakfast.’

Well, they’re all great. But if your A1c is sitting at 11.9%, getting under 6% is a huge ask. And if you are currently using the same box of strips you cracked open on 1 January 2010, increasing to six checks a day is a giant leap. OK – the no chocolate cake for breakfast is probably a good one. For everyone. Just saying.

We all know why resolutions fail. When we expect too much, it’s too easy to give up.

I don’t make diabetes-related resolutions (or any sort of resolutions), but what I do love about the beginning of the year is the possibility, the optimism and the opportunity to wipe the slate clean.

And I look forward. I have a lot to look forward to this year and diabetes-wise, for me it’s all about expanding networks and horizons. I am looking forward to building on the networks I started developing in 2011. I am looking forward to the planning of the 2013 International Diabetes Federation World Diabetes Congress which is in my home town, Melbourne and I am looking forward to the choir of the DOC voices getting louder, more in tune and being heard more broadly.

Looking forward. It’s a good thing to do. And it allows you to look back a little and see how far you’ve come.

Jump over to the Diabetes Australia – Vic blog to read about how my holiday in New York City (and red velvet cupcakes) cured by diabetes. Read all about it here.

*Disclaimer – contains outrageous and misleading claims. And cupcakes. Lots of cupcakes.

We did it! Running from the church

Today I am celebrating my thirteenth wedding anniversary. And for the first time, I won’t be spending the day with the bloke in the photo. (That would be my husband.) I am in Dubai for the International Diabetes Federation’s world Diabetes Congress. He is not.

This photo is of us running out of the church after we’d said our ‘I dos’. Throughout the brief ceremony, various friends performed gorgeous music including ‘One Hand, One Heart’ and ‘I Have a Love’ from Westside Story and the stunning ‘The Wedding‘ by Abdullah Ibrahim – a song that can take me back to each and every step I took as, on my father’s arm, I walked down the aisle to Aaron.

As this photo was taken, the remnants of a tango written by Aaron was being played. Yep – we tangoed down the aisle before sprinting out into the late afternoon.

It was a blissfully happy day and I love the looks on our faces in this photo. All I see is joy.

Not even ten months prior to our wedding day, I was told I had type 1 diabetes. It rocked my very being and made me change a few key things in my life. For a while it made me wonder if anything that I had been, anything that I had known would ever be the same. And I wondered if Aaron would still want to marry me now that I was so broken; would he still want to come along for the ride that was our life together?

In this photo, it looks like we’re ready to take on anything. And thirteen years later, that’s exactly how we’ve approached things. The ride may have been occasionally difficult (and most of those tough times are because of diabetes) but it’s been a fun ride, too. And we picked up a gorgeous little girl along the way to keep us company and share the love!

Last week, Australian (so-called) comedian Dave ‘Hughsey’ Hughes attracted the wrath of some of the diabetes community with an off-hand joke posted on his Facebook page and Twitter stream. Here is what he said:

@DHughesy I wanna give my mate one of those personalized Coke cans. His name is Diabetes.

A short time later he followed up with:

@DHughesy Should have mentioned his last name is Type 2.

Before long, Hughes’ Facebook page was inundated with comments – a lot from parents of kids with type 1 diabetes.

As soon as I saw the response, I tweeted the following:

@RenzaS Wanna know what happens when @DHughesy gets people with #diabetes mad? Have a look at his FB page.

The reaction from some in the wider diabetes community was swift, angry and, in some cases, aggressive. This was followed by confusion from people outside the diabetes community as to why there was so much anger. From both sides, there was finger pointing, swearing, hostility and opposition. And it got ugly. Very ugly. Five days later, it’s still going on.

But are there are two sides to every argument? Hughes’ comment is in bad taste. But was he being deliberately antagonistic towards the diabetes community?

Personally, I don’t think so. But that actually doesn’t matter. The reason that many within the diabetes community got angry is not because they are humourless and can’t appreciate a joke. It’s because they saw it as yet another incorrect and misinformed comment about diabetes; another time they l need to clarify misinformation. Another comment that is more ammunition for the food police to say ‘should you be eating that?’

Dave Hughes has a huge following – 110,000 plus ‘like’ his Facebook page, and almost 150,000 Twitter followers. That’s a lot of people reading something that isn’t true about diabetes.

There were some brilliant first responses – explanations about why the comment could be damaging. Some with diabetes even offered Hughes first-hand experience of what a ‘day in the life’ looks like by inviting him into their homes.

Of course, for some, one comment wasn’t enough. But do we – the broader diabetes community – do ourselves any favours when we react so aggressively? Because that’s where the accusations started, suggesting that some  people started sounding like the joke police. “Should you be joking about that?”

How often have I said to a friend with diabetes ‘Should you be eating that?’ in jest as I, or a friend with diabetes, dive into our second, third, fourth cupcake? Lots. But I will defend my right as one of the pancreatically-challenged to be  able to laugh about this condition. I spend a lot of time laughing at diabetes. If I didn’t laugh, I’d cry!

I knew what Hughes was trying to do with his thoughtless tweet, and thought he misfired completely. But then,  Hughes’ humour often lacks sophistication and dexterity which, some may consider, is part of its (and his) charm.

So – five days into this, I am looking at it as an opportunity to do some diabetes advocacy. A lot of people on Facebook have been talking about diabetes and that’s a good thing! Advocacy comes in many forms, and perhaps all Hughes really wanted was to do put diabetes on his followers’ radar. I hope so.

Can we laugh at diabetes? When, if ever, is the line crossed and who gets to make that call?