Diabetogenic

I’ve spent the morning at a health professional symposium (#HPSymposium) coordinated by two diabetes organisations in Victoria.  The event brought together about 200 health care professionals interested in hearing from some outstanding speakers, including three speakers from the ACBRD.

To have people speaking about diabetes emotional wellbeing front and centre at a health professional conference is a breath of fresh air. And to have three inspirational speakers talking about the importance of measuring emotional wellbeing and providing strategies for interventions gives me hope.

Why? Because finally we’re talking about diabetes in more than just clinical or biomedical ways. We’re acknowledging the ‘living with it’ aspects and asking (demanding?) that these issues are considered.

How do we explain life with diabetes? How do we adequately explain it’s about more than numbers, monitoring, medication, food, attending doctors’ appointments?

We can try to represent this by adding up the number of injections, or BGL checks or pump line changes we do in a week, a year, a lifetime; but does that mean anything to anyone who hasn’t injected themselves daily, checked their BGL or stabbed themselves with an introducer needle to get a pump line in? (A stat from one of  today’s presentations – on average, a person with type 1 diabetes for 40 years will have had 3,500 hypos.)

I am supported by the most incredible family, friends and work colleagues, but do they really understand what living with diabetes means? And is it fair for me to expect them to? The way they show me their love, understanding and unconditional acceptance is perhaps their way. And that is more than enough for me most of the time.

What do I want people to know? It’s simply this: my diabetes is exhausting. But I am living a life of which I am proud. If you need to find a way to measure me – please look at the people in my life, the things I’ve achieved, the places I’ve been and the places I’ll be going. Please don’t look at numbers. They tell you nothing.

This is my Friday entry into this year’s Diabetes Blog Week. For information, click here. And I really recommend you do. Over 200 diabetes bloggers from all over the world are participating and it’s a great way to see what others with diabetes are talking about. Come back tomorrow for Saturday’s entry.

We don’t pat ourselves on the back enough when it comes to diabetes. There’s lots of ‘I should be doing this more’ and ‘I need to do that more’. But not much, ‘Hey! Well done, me!’ or acknowledging that ‘that’ll do’ is actually, ‘that’s brilliant!’

So, today, I’m thinking about what it is that I am most proud when it comes to diabetes.  And I realise that it’s not really the management stuff that makes me puff up with pride. It’s the advocacy stuff.

Perhaps I’m feeling this way after yesterday. It was an important day for diabetes in Australia with the launch of the results from the Diabetes MILES – Australia* study. I was lucky enough to be invited to Sydney to take part in the launch, speaking as a participant in the study.

The launch was held in a diabetes clinic at a Sydney hospital. There was hope that the Minister from the Department of Health and Ageing would be there and the thinking was that launching this report in the ‘real world’ would make it all the more meaningful.

We walked into the clinic and the first thing that drew my attention was a huge poster on the wall about foot care. And there across the top of the poster were graphic photos of feet missing toes, with gangrene and in other states of disrepair. Instinctively, I looked away. And wanted to vomit. Then I got angry.

This is the room that people with diabetes waiting to see a doctor sit – possibly for hours until their name is called. There’s not much else to look at.

My speech was short – only three minutes or so – and really was all about my excitement about MILES and the importance of this research. But, as I stood up to talk, I realised that I couldn’t let the opportunity pass and not mention the horrific images on the wall and how inappropriate they are in this setting.

After the official launch, we had a lovely morning tea. I was chatting to the Director of the Australian Centre for Behavioural Research in Diabetes when a woman from the clinic came up to us. ‘You don’t like our posters?’ She asked me. I was surprised that this is what she wanted to discuss the day that we were launching such an important piece of diabetes research. ‘No. Not at all.’ I said. I wasn’t rude; I was just backing what I’d said earlier. I went on to explain how I felt that scare tactics don’t work, that people with diabetes are aware of our risks of complications and that being hit over the head with graphic images does nothing for us.

‘Oh, that may be the case for some people – particularly people with type 1 diabetes – but people with type 2 diabetes who are not looking after themselves need reminders.’ I gulped back my response (I actually do try to keep myself nice!) and repeated that I really don’t think that scare tactics work for anyone and suggested that they only encourage people to bury their heads in the sand.  

It’s not the first time that I’ve found myself in an argument with a health professional about this issue. And it certainly won’t be the last.  We need to stand up and say when things are not helping us, and I’m fully aware that not everyone has the ability or the desire to do that. But if I see an opportunity, I will always take it. And I’m pretty proud of myself for doing that!

What’s Diabetes MILES – Australia? I’m glad you asked! MILES stands for Management and Impact for Long-term Empowerment and Success and it’s Australia’s first study to assess the psychological AND physical health of people with Australia. The study was conducted by the  Australian Centre for Behavioural Research in Diabetes. You can read the full study report here and you can read my blog post about it on the Diabetes Australia – Vic blog here.

This is my Tuesday entry into this year’s Diabetes Blog Week. For information, click here. And I really recommend you do. Around 150 diabetes bloggers from all over the world are participating and it’s a great way to see what others with diabetes are talking about. Come back tomorrow for Wednesday’s entry.

This Sunday is Mothers’ Day. I know that there is a ridiculous amount of commercialism surrounding the day, but it is still incredibly special to me for many reasons. So, let’s put aside the Hallmark cards, the slippers and dressing gowns (really? That’s a good Mothers’ Day present?), and the Celine Dion CDs. And here’s why Mothers’ Day means so much to me.

As clichéd as it sounds, being a mum is my greatest achievement; and I don’t say that to minimise any of the other incredibly important things in my life. The reason I say this is because diabetes made it damn hard for me to get into a healthy enough state to even consider a pregnancy. There was a while there where I didn’t even think I’d ever be a mum.

And then when I finally managed to get pregnant, I miscarried which triggered an emotional breakdown that was dark, scary, and from which I felt I would never escape.

When I found out I was pregnant again, the fear that something would go wrong overrode the elation and joy that should accompany a pregnancy, and didn’t leave until I was holding my beautiful, bleating, screwed-up-face-full-of-cheeks baby in my arms.

I look at her today as I did on that day with wonder, and every day I think she is a miracle.

She loves me despite my broken pancreas and she sees diabetes as just another part of me. She’s grown up with pumps, needles, BGL meters, jellybeans as medicine and fingers splurting blood. But that’s just her mummy! She is more concerned by my coffee addiction (‘Mummy, have you had your coffee yet today, because I need to talk to you about something’) and she never, ever judges me*. She loves me. And that’s all there is.

And I celebrate Mothers’ Day for my own mother who is an inspiration and a guiding light. I look to her to see the mother I want to be. And I look to her when I am feeling that living with diabetes is all too much. For over thirty years, she’s lived with lupus – another autoimmune condition. We share crappy immune systems and bodies that like to attack themselves. We deal with our faulty organs and body parts with humour and, at times, despair and frustration.

She amazes me with her tenacity, her never-give-in attitude – even at times when lupus has been downright debilitating – and her incredible spunk, class and style. And she can cook better than anyone I know. So there’s that, too!

So, to my own beautiful mum:  Happy Mothers’ Day to you!  And to my beautiful daughter: I love being your mummy. Thanks for being my little girl and thanks for letting me have my own Mothers’ Day.

Mum and me earlier this year. She rocks. She really does and I want to be just like her when I grow up!

 *Yes, I know, she’s seven. The judging is yet to come.

The mind grows sicker than the body in contemplation of its suffering.

Ovid, (43 BC – 17 AD), Roman Poet

There are many things about life with diabetes that get me ranting (see: well, pretty much everything on this blog). But I think the thing that makes me see red more than anything else is the language used when talking about diabetes.

Yesterday, there was an article in The Age newspaper about type 1 diabetes. The article was focusing on an important fundraising initiative that I support 100 per cent.

I love it when type 1 diabetes is in the media – and not just as an adjunct to an article on the diabetes epidemic. But what I don’t love is the way that diabetes (type 1 or type 2) is reported. There are very few cases of accurate coverage about diabetes and this gets me frustrated beyond belief.

So what was it that got me irritated? It was the use of the words ‘suffer’ and ‘sufferer’, which appeared three times in the very short article. As in: people who ‘suffer from type 1 diabetes’.  Now in all honesty, this was a piece of pretty average reporting and the laziness illustrated by using the same terminology three times is evidence of this. However, it got me angry. Really angry.

Let me say this here and now and in capitals. I LIVE WITH DIABETES. And I will add to that that I LIVE WELL with diabetes.

That doesn’t mean that living with diabetes is all fun and games. I know it isn’t and I write about that frequently. But equally, it’s not all doom and gloom.

Here is what I think about when I see the word suffer: I think helplessness, I think powerlessness and I think a lack of ability to take control and responsibility of a situation. I think that others will see it as an excuse to discriminate and as a reason to pity.

I am not helpless, I am not powerless and whilst diabetes doesn’t play by the rules, I take responsibility for and control of the way I live with this condition. Discriminating against me because I have diabetes is not an option and don’t you dare pity me.

Clearly, this has really upset me. More so than usual. I suspect that’s because actually, I am having a tough time with diabetes at the moment. I’m slipping into a sense of burning out. But even when I’m doin’ it tough, I still don’t consider myself as a ‘sufferer’.

Last year, Diabetes Australia released a position statement about the language used when speaking to and about people with diabetes. I don’t think that it’s been particularly widely read by journalists (obviously, the writer of this particular article hadn’t seen it). When we released the statement, a lot of people rolled their eyes and dismissed it as political correctness gone mad.

But it’s not. And while you may not agree with everything outlined in the position statement, it is important to understand the reason for such resources. Language is important. When we were getting ready to launch the statement, I did a little exercise and asked those nearest and dearest to me to use a word (or a couple) to describe me. No one said ‘sufferer’. Is that how you would like people to describe you?

I understand that not everyone with diabetes agrees with me – and that’s fine (although it would be easier if everyone did!). Some people do feel like they are suffering. I did what I always do when I want to get a gauge on how others feel – I put it out on social media and I annoyed the poor people who I work with.

The responses were mixed with some saying we need strong language to illustrate what our conditions are all about. They felt that by tiptoeing around language we are dismissing the seriousness of what we live with. Others agreed with my feelings. Of course, there is no simple answer. But for me, just for once, I’d like to see diabetes reported in an accurate way and people living with diabetes represented truthfully. Just once!

So, is it just me? Are you bothered by the words ‘suffer’ and ‘sufferer’? Or is there other language used about diabetes that drives you nuts?

Generally, I ‘m pretty fashion-illiterate. I have no idea what jeggings are (please comment a description in the space provided below) and couldn’t tell you what length skirt is ‘in’ this year. Apart from a boot collection that would have Imelda Marcos wanting a second look, I have limited knowledge of what the cool kids are wearing. (But I hope it’s stripes. I own and wear a lot of stripes!)

I can live with this.

What I can’t live with is the ugliness that is diabetes paraphernalia. It drives me nuts! Why, oh why is everything black, blue and grey?  

Which brings me to the cases that come with BGL meters. Sure, black is the new black and all that, but something a little funkier than a black mesh case would be a nice change. Yes, something that is neutral for the days that we don’t want to scream “diabetes, here and now” is a lovely idea too. But given that this little object comes everywhere with me – every minute of every day – and is often on my desk, my kitchen bench, the table at the café, it would be just lovely if it was a little bit pretty on the eye.

I have spent hours looking through design and craft markets for cute little pouches that comfortably house my meter, strips and lancet device. At the moment I’m using a Marimekko purse I bought at Crate and Barrel in NYC. I love it because it is bright pink and red and is in their signature Unniko design. Unniko means poppy in Finnish, so when I pull the case out of my bag I not only think ‘nice and bright’ but I also smile because I think of my little girl!

My current meter case. Bright, pink and red with poppies on it. Now that makes me smile!

When I decided to write this post, I had a look in the ‘diabetes cupboard’ (technically, the cupboard doesn’t have diabetes, but it contains all my diabetes supplies) I counted 15 little purses. One is a made from a gorgeous red and cream vintage print with Eiffel Towers all over it. Another favourite is a stunning green with an apple pattern – a good one for when I feel I need to be eating more fruit! I have retro prints in pinks and purples, red and pink polka dots and a red, blue and white zigzag pattern that makes my eyes go funny if I stare at it for too long.

I haven’t found a case with cupcakes on it yet, but I’m almost at the stage where I’m ready to get something made up for me!

Are any guys out there cursing at the black mesh and wishing they had something in a nice pattern? Footy team colours? Pictures of their kids screen printed onto it? Or is this a girl thing? (Or, is this just a me thing?)

So – here is my call to meter companies. Please, please, please make my life a little bit happier by providing cute little meter cases.  Or perhaps you could have a competition asking people with diabetes – you know, the people who actually USE your products – to come up with a pattern for you. Just an idea. But one I think would go down a treat! (And think cupcakes. CUPCAKES, I tells ya!)

What would you like to see on your meter case?

Did you know that if you exactly measure your carbohydrate content, dose your insulin accordingly, take into account the exercise you are doing and consider your stress levels your BGL will always be 5.5mmol/l?

Seriously. That’s what we’re to believe if we read ‘the diabetes rule books’.

And when you manage to do all this and your HbA1c remains steady at 6.9 per cent, you will not develop complications. The diabetes gods promise this. (Actually, between you and me, I think they’d be the diabetes demons, but let’s move on.)

I love that there are so many diabetes rules. Because I like rules. I’m a little nerdy-nerd in real life, so give me a rule book and I’ll not only follow it, but memorise it and hand out detentions to anyone who needs to smarten up or dares step outside the school without their blazer on. Ahem….sorry. We’re talking about diabetes.

If there was such a thing as a diabetes monitor, I’d be it. Because I’d have all the rules memorised – as well as the sub-rules and special rules, and I’d be following them to the letter. Or the number. Whatever!

So, imagine my constant disbelief that although I do play by the rules – sometimes brain-numbingly so – and yet when I scroll through my BGL meter, the results are not one 5.5mmol/l after another. How is it that even though I know I counted the carbs right in my lunch and know I entered my BGL correctly into my pump that I, for some reason, am 19.3mmol/l. Right now.

And riddle me this. How is it that one person with diabetes who has always had an HbA1c sitting around 10 per cent is living complications free, when another whose HbA1c has never been above 7 per cent is now going through laser surgery to treat retinopathy?

The thing about rule books is that they work when the game is simple, straightforward and doesn’t have variables. Diabetes is all about the variables.

And yet, when I ‘break’ the rules (see: current BGL 19.3mmol/l) it is me who feels like I’m off to the principal’s office to write ‘I will be nice to diabetes’ one hundred times.

So, I’ve decided that I’m turning things around. I am sick of feeling bad because, even though I followed the rules, diabetes is not playing by them.  I am tired of apologising to myself and my body when I am following the rules, but still end up having horrible lows  and I am stopping – STOPPING – feeling responsible and guilty when I don’t want to play anymore and am feeling completely and utterly burnt out.

Burn out is creeping into my life and I’m getting better and better at identifying it early. Right now, even though I really am playing by the rules, my diabetes is making up things as it goes along. And I can’t seem to work out what to do. Actually, I can’t be bothered working out what to do.

So, here and now I am acknowledging that diabetes sucks more than usual. I am saying ‘I’m not coping right now’ and I am saying ‘I’m beyond pissed that despite my best efforts I’m getting crap results’.

I’m not throwing in the towel. But I’m changing the game. I’m rewriting the rules. And I’m the one handing out detentions, so, diabetes, you’d better bloody well smarten up!

Need some information about diabetes burnout? Have a look at the Behavioural Diabetes Institute’s website here.

I’m grouchy. Grouchy and phlegmy and feverish and shivery and did I mention grouchy?  I am, to borrow from the delightful Kerri Sparling, ‘real-people-sick’ and I’m not managing very well. I don’t do sick. I don’t do invalid and I certainly don’t do lie-on-the-couch-and-relax-for-a-couple-of-days-and-step-away-from-the-phone-emails-computers-etc. This advice handed out by my GP. For $76. Thanks! Everyone at work was telling me the same thing. For free.

I’m not sure if having diabetes has given me a ‘sick threshold’ higher than the average bear. I’m sure that before my pancreas gave up its day (and night) job I used to take advantage of every sniffle and beg to stay home from school. Actually, I was a nerd at school, so that probably wasn’t the case. But I’m sure that I wasn’t so stupidly dogmatic about being stoic and valiant and all those other words that basically mean, in this case, trying to prove a stupid point. And that point is that I don’t get real-people-sick.

So, I’m sitting up in bed right now – which means that I’m following doctor’s orders – except for the bit about disconnecting. I have my i products (i.e. Phone, Pad, Book) all open and I’m looking at a million different things.

Which leads me to the next point in this irrelevant and boringly meandering story of which, really there is no point. I can’t switch off. I tried climbing into bed with nothing more than a book, but then I remembered that I’d missed yesterday’s Epicure in the Age newspaper. So I grabbed my iPad and opened the Age app and read restaurant reviews and recipes. And then I started thinking about baking, so I then checked out a couple of foodie sites, found a great recipe for lemon curd cupcakes and wrote a shopping list on my iPhone. Then I opened something else on my iPad and then grabbed my MacBook and here I am typing away. Not resting. Not sleeping. Not reading.

The thing is, even if I put a ban on all electronic iGadgets (which, let’s face it – Never. Gonna. Happen.) I still have my diabetes buzzing-and-beeping gadgets that I, you know, rely on. To live.  I’ve been checking my freaking blood sugar every fifteen minutes and making teeny-tiny boluses on my pump and tweaking basal rates because this real-people-sick thing is making my sugars want to play in the teens.

At no point of the day – ever – am I not using some sort of battery-operated machine.

The other day I was speaking with a friend who had just returned from a weekend-retreat of healthy and quiet living. There were many rules for the retreat and these included: no mobile phones (or landlines for that matter), no processed foods, no meat products, no coffee (I stopped listening at this point and possibly started hyperventilating at the thought), no electronics of any description, no smoking and no recreational drugs. And no talking. Seriously – forty-eight hours of no talking – so, I guess no need for the phones.

I reckon I would have lasted about…oh…. I don’t know…thirty-three seconds. At which point, I would have asked a question; probably, ‘Can I have my mobile phone back, please?’

Of course, I’m sure the ban on electrics would not have extended to medically necessary devices. But it did get me thinking about how it would be impossible for me to actually have any time where I could completely switch off and be ‘at one with nature’.

I’d be lying if I said that all the technology (diabetes-related or not) around me annoys me. It doesn’t. It makes me feel connected and up-to-date. And the access I have to a pump, BGL meter and CGM gives me access to information, which helps me make informed diabetes decisions dozens of times a day.

So I’m not turning off. Resting to get over this real-people-sick: sure. But disconnecting? Not so much. In any sense of the word!