Diabetogenic

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!

In keeping with this week’s post to my sixteen-year-old self, and in light of the fact that today is my fourteen year diaversary, I thought I’d write a letter to my 24-and-a-half-year-old self. Because it was at that age that I was diagnosed with type 1 diabetes and I had no idea what that would mean. If only I could have known that things actually would be OK I think that the initial coping period would have been significantly easier.

Dear 24-and-a-half-year-old-me

Oh, sweetie. Diabetes sucks. You don’t know that yet, but let’s clear that up from the beginning. It sucks. It’s not fun and it is a pain in parts of you that you didn’t even know could hurt. But figuratively more that literally.

Right now, you are overwhelmed, stressed, anxious, scared and terrified. In a couple of weeks you’re going to get angry. Really angry! It’s OK to be feeling all these things.

You will be fluent in a new language within the next few weeks. Words that you’d never heard of become part of your vernacular, and you become incredibly conversant in anagrams. BGL, CSII, HbA1c, DA-Vic, ADEA…. And you will delight in the fun way mmol/l rolls of your tongue. (I promise – that will make sense!)

Believe it or not, you are going to be absolutely fine about sticking a needle into your skin four times a day. And you’ll find that actually, it doesn’t hurt. You won’t be quite as comfortable about the jabbing your fingers what feels like a million times a week to find out what your blood sugar is doing.

But things get better. The lancet device you have now is pretty horrendous and in a couple of years, you’ll get a new one that doesn’t make quite as nasty a clunking sound, and will hurt less. Also, the first meter you have will take 20 seconds to count down to tell you your BGL. Wait until you get one that takes five seconds! You won’t know what to do with all that extra time in your day!

Find out everything you can about insulin pumps. Speak with people using one. In three years you will have one and it will change your life. I want you to hold on to that over the next couple of years when things are not going as you’d like with your diabetes management and you think that you’ll never work it out. You do. And your pump is a huge help.

(Also, perhaps tone down the evangelical pump attitude you develop. You become a little zealot-like. Yes, it worked for you, but it may not be for everyone. BUT INSULIN PUMPS ROCK!!!!)

Can we just talk about guilt for a minute? Diabetes comes with a lot of it and you’re going to learn that really quickly. Here are some things that you absolutely should not feel guilty about:

• The fact that you don’t change your lancet EVERY time you check your BGL
• Ditto goes for pen needles, and after three years, pump changes
• What you eat. Food does not have a moral compass.
• When you feel overwhelmed and completely ‘over’ having diabetes
• Not wanting to be a diabetes advocate ALL THE TIME
• Accepting that saying ‘that’ll do‘ when it comes to your diabetes doesn’t make you a bad person; in fact, it makes the whole diabetes palaver more manageable!

As you are in the middle of your wedding plans, here are some things I want you to know about that day so you can relax a little. It is a fantastic day. Your dress is stunning, your hair looks fine and you find the shoes you have been searching for. Diabetes comes along for the ride, but it’s in the background and no one mentions it on the day except for your mum asking quietly if your BGL is OK.

(Also, the cars will be running late, but they’ll get there; and deliver you to the church inside Aaron’s ‘you’ve-got-fifteen-minutes-or-I’m-heading-to-the-pub’ timeframe.)

Oh, and when you meet your endocrinologist for the first time, he is going to tell you that diabetes will not stop you from having babies, as long as you have finished having your family by the time you are thirty. And you are going to wonder how it will be possible for you in the next five and a half years to fit in all the things you planned AS WELL as have a couple of kids. Don’t stress. Soon, you will find an endocrinologist who sets you straight. And when you are three days shy of thirty-one you will have a daughter. She’s a delight.

He will also show you some scary pictures of amputated limbs, kidney failure and tell you that you may go blind. Please, please, please don’t be shocked by what he says. The scare tactics that are used on you by him and other diabetes health professionals you will meet in the next couple of years will actually make you angry and determined. This is a good thing. As you seek out information, you will learn that complications are not inevitable and you will do everything possible to minimise your risk. And you will also come to understand that the guilt associated with complications is not fair.

You are going to meet some incredible people in the next few years – some of them become some of your best friends. Having a support network of people living with diabetes will inspire you, help you. Seek them out! And you have no idea what this means, but when, in 2011, you decide to get on Twitter, embrace it like there’s no tomorrow. Your mind will be opened up to a world of amazing, inspiring, caring, funny people all over the world who, like you, live and love with diabetes. You will call these people your friends and you will be part of a global community that makes you feel accepted and safe.

So 24-and-a-half-year-old me. The future isn’t as grim as you think it is right now.

With fondness,

38-year-old-me

P.S. I also wish that right now you would look back to last week. Remember when you didn’t need to consider the carb content of the food you are about to eat, or wonder how it will impact on your BGLs. And I want you to remember not having to give yourself a needle before you eat lunch. Really, really remember that time, maybe write about it. At 38, you won’t remember. It will be as if you have always had diabetes. Always.

There’s been a fun hashtag doing the rounds on Twitter in the last 24 hours or so: #dear16yearoldme.

It seems a long time ago that I was sixteen. It WAS a long time ago that I was sixteen! But with increased age comes increased wisdom. And this is what I’d like to tell my sixteen year old self:

• You have a working pancreas. Don’t take that for granted. Right now, you have no idea what that means, but when you are 24 years old you will. So, if you’re going to eat that jam doughnut (and really – if you want it, go on and eat it), I want you to marvel at the fact that your pancreas will release insulin. ‘Cause it ain’t going to do that forever!
• You are not fat. Seriously. Get over yourself! (So just eat the bloody doughnut!)
• Keep playing the flute – because you will get into the Conservatorium of Music at Melbourne Uni and meet the most wonderful man. And you’ll marry him! (And dear 19 year old me, don’t hate him when you first meet him. Even If he is playing the saxophone loudly and you have a headache. Also, make sure you do buy that handkerchief skirt. It’s what you wore the day you met and he can still remember you in it!)
• Don’t announce to anyone and everyone in a throw away voice ‘Oh, I don’t want children’. Because one day you will and it will take you a long time for it to happen. And your heart will break until you can. But when you do, you will have the most beautiful daughter. And your heart will sing every day because of her.
• Listen to your father. He is right. Damn it!
• And your wonderful relationship with your mum continues. Don’t take that – or her – for granted. She will be your rock in some really difficult times ahead. Also, admire the way she lives with her chronic health condition. She will become your inspiration in more ways than you can imagine in a few years’ time.
• Maths is important. You’re going to need to use algebra to work out the carb content in food. So pay attention!
• And also, your year 12 English teacher who tells you that, at some point, you’re going to want to be a writer is right. Listen to her. Learn from her. And read everything on her reading list.
• Those white jeans. Throw them out. Now!
• That ridiculously affected thing you and your friend do – you know, sitting in a coin laundry reading Beat poets and novelists? It’s pretentious. Just read the bloody books. And you don’t like black coffee – no matter how much you pretend you do!
• The nerdy thing you are trying so hard to escape? Embrace it!  Seriously – you are a 16 year old flute player. And you sit in the laundromat reading Jack Kerouac. And you can recite Howl. The only way is geek!
• Your life is not hard. No matter how much you think that it’s not fair, you’re wrong. You’re incredibly lucky.
• You talk too much. But that’s OK and it will come in handy later on. As will debating, so keep doing that!
• That guy on the Glenferrie Road tram. He’s just not that into you. Move on!
• Two words: Harry Potter. You are going to LOVE IT!
• Those girls from school who you think are your best friends? They are! And they continue to be your best friends as you grow up. Treasure this time with them. (And try to remember funny stories. And take lots of photos of bad hair and daggy clothes to torment each other as you get older!)
• Wear a cardigan. It’s cold out there in Winter!
• Thirty eight isn’t old! Really, it isn’t. And I promise you this. You are OK. In fact you are better than OK. And your life turns out really well. You continue to be incredibly lucky!

This topic is part of Health Activist Writer’s Month Challenge (#HAWMC) by Wego Health. The challenge is 30 days, 30 posts. I am a realist, and know that I am not going to be able to do the full 30 posts. But this one I absolutely had to do!  Here’s more information about the challenge.

I had one of those weeks last week that makes me eternally grateful for my job! On Monday, International Diabetes Federation president, Professor Jean Claude Mbanya visited Diabetes Australia – Vic and gave two presentations to staff.

I was then lucky enough to interview Professor Mbanya and you can see the interview here.

Then on Wednesday, I visited our Autumn Camp. Fifty kids with diabetes were enjoying Victoria’s beautiful Autumn weather in an idyllic bush setting. We arrived at camp to see the kids playing frisbee, kicking around footballs, lazily lying around on the grass chatting and scaring me senseless as they launched themselves off the flying fox. (Not a single kid screamed. I, on the other hand, wanted to cover my eyes in terror.)

I am incredibly fortunate to have a job that I love. But even more than that, I have a job that gives me so much. I meet inspirational people – quite regularly, actually. I get to visit kids with diabetes at camp and see what an impact a few days away with other kids has on them – and then I speak with their parents about how their kids have returned home more confident, comfortable in themselves and fiercely independent.

Someone said to me that other day how it must be wonderful doing a job where I know that I’m ‘giving back’ to the community. Actually, when I really think about it, I think I’m the one who’s getting the good deal here. Eternally grateful and incredibly lucky!