Diabetogenic

Is THIS what comes after burnout?

January 14, 2015 in Awareness, Diabetes, Mental health, Real life, Wellbeing | Leave a comment

Four weeks into a family holiday, away from the mundanity of every day, away from schedules, away from stresses, and I can see just how much better I feel – emotionally as well as diabetes-wise.

After writing an extremely raw account of the diabetes burnout I have been experiencing for some time, I have spent time wondering just how I was going to get diabetes back to a place that would stop causing me so much concern and guilt and stress and anxiety. Because that’s the thing with the way I do diabetes burnout – I don’t just burnout, I then focus on the burnout. Which makes me more burnt out. And then I focus on how much bigger the burnout is getting. You get the picture.

But here, in New York, surrounded by my family and visits from friends, I am feeling that things are slowly, but surely, balancing out again.

Diabetes management has gently snaked it’s way back into my life – just as a regular part of my routine. I’ve found myself checking my BGLs with more frequency – and less frustration – than had been the norm at the end of recent times.

I don’t get to the end of the day and find a pressing feeling on my chest because I have been suppressing the guilt of not checking my BGLs. I don’t ignore high BGLs that I know to be the result of a pump line that really needs to be changed. Diabetes tasks like these just happen; far more effortlessly.

But I am taking things slowly and easily. Baby steps.

I decided not to reconnect my CGM after the sensor fell out during the first week here. I’m spending most of the time with my family, so not feeling I need it as my safety net as I do when either travelling alone or at home at night while Aaron is out doing gigs.

I know that this isn’t reality – as much as I wish it really were – but I am absolutely savouring this time. This somewhat alternate existence is such a privilege – I feel lucky. I feel happy, actually. For the first time in a very, very long time, I feel truly content.

And of course, that makes the overall shitty-ness of diabetes a little easier to manage. But (make no mistake) it doesn’t make it less shitty overall…

I came to this realisation the other day as I was pushing in a new infusion set. I packed away the waste and tucked the freshly-primed pump into my bra, thinking about how much I really dislike diabetes tasks. Because I do. I don’t want to check my BGL or shove a sharp introducer needle into my side to re-site my cannula. But I just do it.

When I am burnt out, one of the reasons I don’t want to do these things is because I hate them. But even when I am just getting on with things and all is ticking along okay, I still don’t enjoy these tasks.

And you know what – that’s perfectly okay!

Perhaps for me what comes after burnout isn’t just getting back on track. Perhaps every episode of burnout – however long or debilitating – ends with a realisation that diabetes is still a shit. There’s just a little more acceptance.

And a tangible sigh of relief to find myself seeing some light for the first time in a very, very long time.

The loos at The Garden

January 13, 2015 in Awareness, Diabetes | Leave a comment

The bathrooms at Madison Square Garden would have to be the cleanest public toilets I’ve ever seen. It was tough to get up and take a break from what was turning into one of the best gigs I’d ever been to, but when nature calls, you answer – even if Billy Joel is on stage!

I found an empty cubicle, quickly peed (TMI) and went to wash my hands. At the basin, out of the corner of my eye, I saw a women rummaging in her bag. I was about to look away, when, in the reflection of the mirror, I saw her pull out some thing familiar. It was an insulin pen. She bent over ever so slightly and jabbed the needle into her thigh, right through her jeans.

Our eyes met. ‘Oh, sorry,’ she said. I could tell it was a reflex – said in the same tone as if she had accidentally knocked elbows with me.

‘Don’t be,‘ I said. ‘I have diabetes too.’

She smiled at me and looked relieved. ‘My blood glucose is high. I needed some insulin…’Suddenly she looked a little sheepish. ‘I shouldn’t inject through my clothes though. Right?’

‘Ah – shoulda coulda woulda!‘ I said to her. ‘Whatever works for you! I was high at the beginning of the night. It’s coming back down though, but now I’m paying for the water I was guzzling earlier! If you don’t mind me asking, why are you injecting in the loo?’

She looked confused.

‘Ah…bathroom.’ I corrected myself. I keep forgetting that even though we allegedly speak the same language, I spend a lot of time rephrasing what I say here in the US to make myself understood.

‘I always do,‘ she said. ‘Some of my friends and family get uncomfortable around needles,‘ she said. ‘So I use the restrooms. I don’t want to upset them. Where do you inject?’

I finished washing my hands. ‘I use a pump,’ I said. ‘But I always would just inject wherever I was – I never used the bathroom. But that was my choice. My attitude has always been that if someone has a problem with seeing me do my diabetes stuff, look away. And grotty…um…dirty bathrooms are not the place to manage my diabetes. Not that these bathrooms are dirty – they’re spotless!’

‘Do you like the pump? I’ve read a lot about them. I’ve only had diabetes for a year.’

I could see in her face that she really wanted to talk. And I really wanted to talk to her.

But I was at Madison Square Garden, and Billy Joel was playing. And I wanted to get back out there and keep dancing and singing and enjoying the gig too.

‘I do,’ I said. ‘I’ve been using a pump for almost 14 years now and a CGM for about 5. For me, it’s the right choice for managing my diabetes as best I can. If you are interested in hearing what people think, maybe have a read of some diabetes blogs. I find that they give the best – and usually most unbiased – views of diabetes technology and treatments.‘

‘Yes, I have started to read some really great blogs that have helped me. It’s so great to find people who are going through the same things. It makes me feel like I am gong to be okay.’

‘You are,‘ I told her. ‘Really; you are.’ I looked at her square in the eye, hoping to help her understand.

‘Right. I’m going to head back out there. But it’s been lovely meeting you. Good luck with everything. And enjoy the rest of the gig. Hope your sugars come back down soon.’

As I walked out of the bathroom, the cleaners continued to wipe up the basins and clean out the cubicles.

I ran down the stairs and took my seat just as the piano intro to ‘And So It Goes‘ was being played, and squeezed my husband’s hand.

‘You good?’

I looked around the stadium, at the thousands of people in the room and wondered what the odds were of me and another PWD bumping into each other. I shook my head a little and smiled.

‘Yes, babe.’ I replied. ‘I’m so good.’

Twitter outrage

January 9, 2015 in Uncategorized | 8 comments

The New Year is but a week old, yet Twitter outrage is already in full force.

Jamie Oliver released a photo the other day. There was the cheeky lad standing in front of a giant Coke can, holding up sixteen sachets of sugar. It took me a moment to see why this photo was flooding my social media streams.

But there it was: in the familiar Coca Cola font, across the giant can, the word ‘diabetes’.

And my heart sank.

There it was: unsophisticated messaging at its worse, that we’ve all seen it before. It’s unimaginative and, quite frankly, boring.

No. The reason was because I could taste the stigma, and I could taste the outrage. I could see what was happening and I could see that the outcome would be. Without reading them, I knew the words. I could feel the anger.

I’d seen it all before. Countless, countless times.

Jamie’s response was swift. He apologised on Twitter and removed the photo. That was the right thing to do after doing something thoughtless.

I love Jamie Oliver – I always have. I think the work he does supporting better nutritional choices for kids at school and people everywhere is really important. His profile allows for great reach and he usually is spot on with what he says.

His messaging is generic – it needs to be to reach the masses – but one of the things that I admire is that he doesn’t overstep the mark like some other celebrities. I can’t recall him ever making health claims, other than urging people to eat as much fresh food as they can and encouraging people to cook at home. ‘Teach your kids to cook,’ he says. That’s good advice!

But here he missed the mark here – drinking too much Coke doesn’t cause diabetes. But comments like his do cause stigma to those living with diabetes. How many times have we seen that happen?

I wasn’t all that angry about it this time.

Maybe my response is clouded by the fact that I am currently in the middle of an enormously enjoyable holiday where the most stressful thing I’ve encountered each day is deciding which hat to wear to face the cold. Perhaps I am too relaxed and chilled out and basking in the glow of doing nothing but spending time with my husband, daughter and some wonderful friends. Perhaps it was his swift apology.

In my incredibly fortunate position of enjoying said holiday, maybe it’s easy for me to just dismiss this. It’s easy to not let it add to stresses and pressures of work and life. It’s actually quite liberating! Perhaps something to try more of when reality returns at the end of the month and I go back to work and back to ‘real life.’ Life can be stressful enough without adding social media outrage to the list!

Not looking for it – the NY edition.

January 2, 2015 in Diabetes, Food, Travel | 1 comment

‘Do you want basal with that pizza?’ We were in Little Italy at a restaurant we’d been sent to by the owner of a local guitar store.

I stared blankly at the waiter. What was he asking me? Of course I’ll need basal with that pizza – it’s freaking pizza. And I’ll need a shed-load of dual wave bolus too. Why were we even having this conversation?

‘Basil’ my husband whispered to me.

‘Oh, BASIL! Basil! Yes. Yes please.’

In Barnes and Noble the other day, loitering in the kids’ section with the kidlet, I saw this book:

The other night, wandering around a holiday market, we warmed our freezing fingers in a chocolate shop and I saw these – the perfect antidote to a syringe of insulin!

As we made our way to a guitar shop in the East Village, we walked by this diner – surely the perfect place to treat a low.

Just a couple of blocks from our apartment is this sculpture. And even though I know it’s not about diabetes, it is to me.

And every time I look up, I see skyscrapers that are shiny and edgy and beautiful. And they remind me of sharp, pointy needles.

Diabetes – if you look, you can find it everywhere…

I was more than a little honoured to see that three Diabetogenic posts from last year had been voted Best of the Betes Blogs. Thanks to Sara from Moments of Wonderful for running this – and acknowledging diabetes blogs and bloggers. And thanks to those who voted for me.

I wish for this

January 1, 2015 in Diabetes, Travel, Wellbeing | 2 comments

In New York City, the streets are full of people. With only hours until the ball drops, there are people everywhere and more police than I have ever seen trying to control the flow of people and traffic. We just fought the crowds to get back to our apartment where we plan to spend a couple of hours before braving the cold and heading out again to catch some fireworks and see in 2015.

Never one for resolutions, I don’t have a list of things I plan to achieve. As tough as 2014 was, I’m not swearing to leave it behind with promises of new starts. I’ve tried that the last couple of years only to find more difficult times ahead. I have learnt that a clock ticking over to 1 January does not promise anything new. It really doesn’t.

But that doesn’t mean I am not hopeful.

Today, as we spent a most wonderful afternoon in what could be the most beautiful place in NYC, I saw this card:

And then I realised that as much as I don’t care for resolutions, I do care for these things. And it is with pleasure, and a hopeful heart, that I can say that right here, right now, I have all these things. I am healthy – despite diabetes; and I am happy and at peace with who I am.

And in all honesty, that is a really good way to see in the New Year.

Merry and bright

December 25, 2014 in Uncategorized | 1 comment

Wishing you all the happiest of holidays, merriest of Christmases and most joyful of times – however you choose to celebrate.

We’re celebrating with dear friends in New York. Missing our extended clan back home in Melbourne, but so lucky and pleased to be sharing the season with a great family, and enjoying a northern hemisphere Christmas. (Message to Santa – could you please make it snow? Please? Pretty please?)

Thank you for dropping by this year; for the support; for the laughs and for the love. It’s been a tough year, but 2015 is looming bright. Bring it on!

Much love from my gorgeous family to yours.

Renza

Take it away, Bruce!

Aussies in American Girl

December 23, 2014 in Awareness, Family | 3 comments

Eighteen months ago, we’d never even heard of American Girl. In fact, it was a completely blank look I gave one of my friends when she told me that we had to take the kidlet to AG when we were visiting the US in the middle of last year.

‘What is it?’ I asked

‘Only the best doll shop in the world.’ My friend had bought her daughter – a friend of our daughter – an AG doll when she was in NYC the year before.

And so it started. Walking the streets of NYC, out of the corner of my eye, I caught the red awning and overall ‘pinkness’ of the three-story American Girl emporium in Midtown Manhattan. My husband saw it too and despite our best efforts to distract our daughter and guide her line of vision away from the store, she noticed it. And started jumping up and down.

‘American Girl! American Girl!’ she squealed. ‘We HAVE to go in.’ And without waiting for us to agree, she stormed through the doors. ‘Oh-Em-Gee,’ she announced. I cringed.

We walked the three floors of the store in delight (the kiddo) and terror (her parents). I started calculating currency conversions in my head and worked out that if we bought only one doll and one outfit we could probably keep both our cars and only get one second mortgage on the house.

Of course, there was not only one outfit. Because there were also accessories, books, shoes, jewellery and a matching outfit for the kid. (Thankfully, there were no ‘But I want a pony!’ demands from our child, unlike the kid near us who was throwing a tantrum and cursing her mother as the ‘WORST MOM IN THE WORLD I CAN’T HAVE A PONY. NOW’ (Possibly, her name was Veruca Salt.)

Our daughter picked out a doll that had long, dark-brown hair, dark eyes and no fringe. She named her Iris. ‘I want her because she looks like me,’ said the kidlet. And she was right; she kind of did. We walked all around New York with Iris, and people in the street would comment that they looked alike. Our daughter smiled proudly.

We retuned to Australia with Iris and her wardrobe of outfits and accessories, and she became the favourite toy – and has remained that way.

When we decided on a return trip to NYC, the kidlet spent all her planning time working out how many times we would visit AG. She saved her birthday money and worked out what she would buy and announced to everyone that the reason we were going to New York was to go to American Girl. (Please know, that is NOT the truth. The reason we are here is to visit Doughnut Plant. Of course.)

So, we arrived last Wednesday and on Thursday, we walked through the revolving door, the kidlet squealing again.

This time, knowing what to expect, I spent the time really looking at all the dolls and the accessories. I actually quite like the back-stories to some of the dolls – it’s an interesting and fun way to introduce kids to different periods of history.

We looked at the accessories and outfits. And there, amongst the dance, soccer and karate uniforms, roller-skates, doll-sized musical instruments, equestrian gear, camping equipment and skis, I noticed a wheelchair, crutches, a hearing aid and seeing glasses.

American Girl dolls come in every hair colour and style, they have different colour eyes, some have freckles, and they have different skin tones. Most girls can find an AG doll that looks just like them, and the boys can find a look-alike Bitty Baby.

Dolls can be customised to look and BE just like the kid who it belongs to. And that’s kind of cool.

‘I wish there was an American Girl insulin pump and CGM. Then I would buy one.’ I said. And you know what? I totally would.

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Samantha (on the left) and Iris.

Take a holiday

December 15, 2014 in Diabetes | 4 comments

Dear Diabetes

This afternoon, I am putting on my ‘out of office’ message which means that anytime someone emails me, they will be told to go away and leave me alone that I am on leave for six weeks and I won’t be answering their message. There is no other admin task I enjoy more than clicking the ‘save’ button on this message.

I was hoping that in the spirit of the season and because I am more than just a little tired at the moment, that you might be a pal, and perhaps put YOUR ‘out of office’ message on too. For the next six weeks, how about you take a little holiday from me? You don’t need to go far, in fact, you can even come with me on our family holiday, but only if you promise to behave yourself and not get in the way.

I know you’ve been busy this year with…well…messing with my mind and blood sugars and sending me into the depths of burnout, so maybe having a few weeks of quiet time will be good for you.

If you are looking for some ideas of how to keep yourself busy, I have a few for you:

Instead of spending days at a time on rollercoasters, how about you just stay still and quit the highs and lows for a week?
Sleep through the night. No waking at 3am after having plummeted to ridiculous lows, or nose-bleed-enducing highs.
Be nice and kind to me, remembering that even though I haven’t been looking after you as much as I would like to, I’m doing my best. And I promise that I will do more if you give me just a little breathing space.
Read the rule book. Learn the rules. Teach them to me. Stick to them. For ever and ever amen.

Having time off is a really great way to recharge your batteries and get ready for the New Year. After your holiday, you can come back and we can work together again.

Your ‘out of office’ message is a little different to mine. All it has to do is deliver a beautiful number between 4 and 8 on my BGL meter and a CGM line that is straight and in target. Nice and smooth does it. All the time. Even when I spend the day eating nothing but doughnuts from Doughnut Plant. Which I will be doing. A lot.

My ‘out of office’ message will tell people that I will be checking email infrequently. How about you do the same, take a break and only pop in occasionally too? I promise to be nice to you when you do. I promise to pay attention to you if it’s just a short visit.

I would really like a holiday, some time away with my family to explore New York and spend time with friends. It would be lovely if you let me do that.

What do you say?

Here’s hoping!

With affection from the bottom of my pancreas,

Me too! Me too!

December 12, 2014 in Awareness, DOC, Guilt, Mental health, Real life, Social media, Stigma, Wellbeing | 1 comment

This week, I wrote a personal piece about an extended bout of diabetes burnout. (Whoa – that’s a lot of words with ‘…out’ in them….)

I have been overwhelmed by love and support from the diabetes online community, and people outside the community as well. Seriously, completely and breathtakingly overwhelmed – and wish I could reach out to every single one of you who has reached out to me to thank you and give you a Nutella cupcake.

I wrote about this for one simple reason – it is my real life with diabetes, and that is what this blog is meant to be all about. Sugar-coating (ha ha – whatever) life with diabetes does no one any good and there is no point pretending it is all fun and games.

Talking about the times things are going well is really easy. Being humorous and looking at the bright side is easy too – and as a person who really does usually see her (champagne) glass/coffee cup as being half full, it is easy for me to seem positive about things all the time.

But the problem with that is that we don’t talk enough about the tough things. And that leads to feelings of shame, which, in turn contributes to stigma.

One of the reason I am such a huge supporter of the Australian Centre for Behavioural Research in Diabetes (ACBRD) is because, apart from being a bunch of fabulous, smart, funny and lovely people, their work means we are talking about the emotional wellbeing side of diabetes. Thanks to the immense body of work they are doing, diabetes is being seen as far more than a numbers game. The quality of life implications of living with this chronic condition are being considered and we are getting a better understanding of distress, anxiety and depression that is related to diabetes. Even more importantly, we are talking about it. And even more importantly, there are strategies being developed to address these things.

I’ve been writing about mental health and diabetes – and wellbeing and diabetes – for some time now because we need to be able to discuss it freely, free from judgement, devoid of stigma.

It’s the same reason that I have written so openly about my miscarriages. I don’t do it because I want people to feel sorry for me or pity me. I do it because it is part of my story. And I do it so that others can see that it is a perfectly normal thing to happen and that there is no shame in it. After I had my second miscarriage, my mothers’ group met. We were sitting around in someone’s living room with our young kids toddling around, playing quietly. It had been a while since we’d caught up and we were going around saying what we’d been up to.

‘Oh, things are their usual crazy self,’ I said. ‘But I had a miscarriage last month, so have been dealing with that too.’ It was the first time I had told anyone, apart from my immediate family and very close friends.

One of the other mums looked up sharply. ‘What? Why didn’t you say something? Why didn’t you let us know? I had a miscarriage three weeks ago. I don’t know anyone else who’s had one. I really need to talk about it, but didn’t know who to turn to. I really wish I had known.’ And she burst into tears, coming over to give me a hug. We sat there and discussed our experiences and how we were feeling and how we were dealing with things. We both felt guilt and shame. We both felt we had somehow failed ourselves and our partners and our families. We both felt the same way – yet were telling each other that we were wrong to feel that way.

It was at that point, I decided that I would no longer hide my story. Because hiding it – when I am usually such an open person – suggests it is something to be ashamed about. Because that’s what happens when issues go underground, we feel shame. I don’t want any woman to feel ashamed because she has had trouble carrying a baby. I don’t want any person to feel ashamed because they are feeling overwhelmed or depressed or in distress because of their diabetes.

There is no ‘fault’. And there should be no guilt. So when we open up and talk about the not-so-good things, we see and accept that this is part of life. It normalises things. It allows for open and easier discussion. And it helps us connect with others who are sharing the same experiences.

Because I can promise you, my story of burnout is not unique. Absolutely not.

I’ve decided that my two favourite words in the world are not ‘coffee, please’ or ‘shoe sale’. No. They are ‘me too’.

Apparently, it’s snowing in New York! So the Brian Setzer Orchestra, live at the Rockefeller Centre with ‘Winter Wonderland‘ seems more than a little appropriate today!

Clark Terry

December 11, 2014 in Diabetes, Real life | Leave a comment

Last night, my husband and I saw a documentary about jazz great, Clark Terry. The fim is called Keep on Keepin’ On and I would urge you to see it if you can. Terry, a trumpeter from Arkansas, played with jazz legends including Dizzy Gillespie and Count Basie and influenced other jazz greats such as Miles Davis and Quincy Jones. He has been a prominent educator and a presence in the jazz scene since the 1930s. Just this week, Wynton Marsalis paid tribute to Terry in this beautiful post on his Facebook page.

I knew very little about Terry before going in to see the movie, but I was briefed on a few key highlights of his career and some detailed anecdotes as well. (This is what happens when married to a musician with an encyclopaedic memory.)

What I didn’t know going into the movie that Clark Terry has diabetes. I am not sure what type – no specific mention was made in the movie – however his wife Gwen said that he had lived with diabetes for over 60 years. I wanted to stand and applaud at that point, but figured the Cinema Nova movie-going crowd would not appreciate, nor understand, the ovation.

The documentary was gorgeous and showed Terry’s talent and generous spirit. A significant part of the film followed one of Terry’ students, a young pianist, Justin Kauflin. Kauflin obviously has a great deal of admiration and respect for Terry, but that was returned in spades by Terry himself. And one of the things that connected the two – apart from the music – was they are both vision impaired – Kauflin is blind due to a rare eye disease and Terry has significant vision loss due to his diabetes.

The film was mostly focused on the last four years, although there were lots of incredibly flashbacks of Terry’s impressive career (including this – you have to watch this!). In recent years, Terry’s health has declined and recently, he had both legs amputated below the knee due to wounds in his feet that would not heal – of course, this is a complication of diabetes.

I thoroughly enjoyed the documentary, but there were times I was in tears and found it really difficult to watch. I love the way that diabetes was portrayed in the film – it was not sensationalised at all. But it was still tough to watch.

Seeing diabetes complications playing out in someone’s life is a difficult thing. I cried when he was given the news that the treatment he had been undergoing to treat the wound in his foot had not worked and the only option remaining was amputation. The same thing happened with his other foot. I cried harder when he was telling his wife just how much pain he was in. But mostly, I cried when he said he wanted the surgery to work. His determination was startling to me – he just refused to give up because he feels he still has so much to give – so much to offer young musicians.

When we left the movie, I said to my husband that there were parts that were really tough for me. But he reminded me that Terry has lived with diabetes for 60 years. That’s a long time. A long, long time.

Clark Terry turns 94 on Sunday. His contribution to jazz music is clearly significant. He is recognised as a pioneer and has appeared on over 900 recordings. He did this all with diabetes. And although he no longer performs, clearly he is continuing to make a difference in his chosen field. Diabetes hasn’t stopped him.

Pretty much anytime I see a movie at Nova, I head across the road to Readings – often to buy the movie’s soundtrack! But last night I was looking at their Christmas music CDs. I really wanted the Neil Diamond album (most obviously called ‘A Cherry Cherry Christmas’) but was outvoted by those with taste. Vince Guaraldi’s ‘A Charlie Brown Christmas’ won out. My favourite tune on the album is not a Christmas song at all, but it is fun and joyful and I love it! Here’s Linus and Lucy.