I’m back home after three days on the Gold Coast for part of this year’s Australia Diabetes Society – Australian Diabetes Educators Association conference. More to come next week, when I’ll try to pull together my very messy notes.

For today, here are some pictures!

 

As I took the stage to chair one of two sessions at the Roche Educators Day in Tuesday, I realised I had already been up for seven hours. It was only 11am. Sentences were difficult until my fourth coffee of the day kicked in!

 

On the job. Professor Steven Boyages’ talk: A connected ecosystem for healthcare professionals & their patients’ was full of practical tips about using technology to support people with diabetes.

 

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This was the moment I opened the new NDSS Diabetes and Emotional Health Handbook (for health professionals supporting people with diabetes) and I saw Diabetogenic on page 24! Thanks for capturing, Professor Jane Speight!

 

Proud moment!

 

Advocates running amok. We actually behaved ourselves quite well. Mostly.

 

Although, we were mighty busy! Three of the top four influencers at the conference happen to be consumer advocates, sharing information from the conference specifically with the intention of reaching other PWD who could not be in the room.

 

Martha Funnell used this in her talk on day one. Sums up many, many days!

 

Rather proud of this special young lass. Here’s Ashley presenting on her work focussing on the needs of young people with type 1 diabetes.

 

This is a combination of jet lag and exhaustion. (Jet lag belonged to Harriet.)

 

The NDSS stand looked very bright thanks to these beautiful resources from the Young People with Diabetes Program.

 

And another proud moment. Kim’s outstanding work on the national roll out of Mastering Diabetes means this resource is in the hands of those who need it most: children with type 1 diabetes, their families and schools. Well done, Kim! (And I’m holding Moving on Up which I am equally proud of!)

 

Spot the diabetes devices….

 

Gold Coast.

Proper wrap up coming next week. Enjoy your weekend. I know I certainly will! (But you can play catch up by checking out all the #ADSADEA2016 tweets.)

My first car was a 1970s Fiat 128. It was bright yellow (‘limone’) and was my pride and joy. It cost me under $2,000 back in 1993 and it remains the coolest car I have ever driven.

I longingly think back to the days of driving around in a little zippy car that was bright and fun. Other Fiat drivers would toot their little horns when they saw me on the road, and I would raise my hand in a friendly wave of vintage-car solidarity.

But it was very basic. There was absolutely nothing fancy about this car. In fact, today, it would struggle to pass a road-worthy check.

I had to keep a little container of spare fuses in the glove box because the electrics were shot. When it rained, the wipers would stop working. (Useful, I know!) As water leaked through the bonnet and onto my shoes, the wiper fuse would blow after sparking dramatically. I became incredibly efficient at reaching over and into the glove box stash for a new fuse, removing the dead one from the fuse box located just under the steering wheel, and replacing it with one that would get my wipers swiping again. All while continuing to drive through the rain, squinting through the water droplets on the windscreen until the wipers sprung back into action and I could see properly again.

Oil needed to be checked daily as it would frequently leak from the engine, and I was terrified of blowing the head gasket if I let the oil tank run dry.

The speedometer read in MPH, so I had used specks of Liquid Paper to mark 60kms and 100kms in a lame endeavour to remain within the speed limit – something that I only did rarely anyway.

I developed enviable muscles in my upper arm steering the little thing because power steering hadn’t been invented when this car was built.

And, of course, it was a manual car, because automatic cars were for wimps who didn’t know how to drive. This idea was beaten into me by my cousins who taught me to drive on the winding Kew Boulevard near home with no instructions other than ‘Don’t brake around corners. And don’t go below 60KPH’. I learnt to drive with the attitude and confidence of a Roman taxi driver.

I grew up being driven around in Fiats and Lancias. Even now, my dad drives an Alfa Romeo. So does my sister. And most of my extended family. These days, when I drive up to family gatherings in my sensible German-made car, they look at me with pity, and then turn away as they continue to look at their stylish reflections in the stylish windows of their stylish Italian cars.

The kidlet has already decided that her first car will be a Fiat Cinquecento in pale blue. I think she is ashamed and embarrassed to be seen in my boring and decidedly uncool silver Merc, preferring a zippy little Italian number so she can legitimately shout obscenities at cars driving too slow on the road while waving her hands at them. (#HerMothersDaughter)

These days, I drive an automatic car that pretty much does everything for me. It alerts and alarms and warns me if there is anything likely to interfere with my driving. It reminds me when it needs servicing, and is easy as easy to drive. Everything is programmed and instinctive, and perfectly set out, in brilliant, efficient, modern and safe German order.

In fact, my car today operates much like the diabetes tech I use: the latest equipment; the most efficient. I was an early adopter of pump therapy, one of the first people to start using CGM here in Australia, and have always liked to have the newest and snazziest BGL meter in the little Marimekko purse in my handbag.

I have no sentimental feelings towards any of my tech – I’m more than happy to ditch whatever I am using as soon as something newer, faster, brighter, smarter comes along.

I can’t for a moment imagine wanting to go back to using diabetes tech from 1970 (was there any diabetes tech in the 1970s?), but the thought of my mid-seventies Fiat makes me swoon. It was also a time before diabetes. Maybe the rose coloured glasses that are firmly placed on my face when thinking about my Fiat, also reflect a time when I didn’t need technology to keep me alive.

The other day, I saw a little yellow Fiat like the first one I owned. They are pretty rare these days and I get incredibly excited when I see one. I was in my car, stopped at a set of lights, and there, in my perfectly aligned, safety-glass rear-view mirror, I saw a flash of yellow. The Fiat pulled up next to me on the passenger side of my car. There in the driver’s seat was a woman about my age. She looked over at me and I smiled.

I flashed back to being 19 years old, driving around Carlton feeling like the coolest kid ever, without a care in the world. I didn’t have to think or worry about diabetes then. I didn’t have to check my BGL before starting the engine. Or make sure I had a supply of hypo foods hidden away. I didn’t have to wonder if I was going low on a long trip and pull over and check my glucose levels to make sure I was safe to keep driving.

In fact, the only thing I had to check before I got in the car was that I looked sharp and cool. Oh and that I had enough fuses in the glovebox for the fifteen-minute drive to Uni!

22 years ago! My gorgeous little Fiat 128. And me looking like an extra from ‘Friends’ in my 1990s jeans!

So many things on my radar at the moment. Here is just a taste!

Gila Monster and diabetes

Over the weekend, federal health minister, Sussan Ley announced the drug Bydureon would be listed on the PBS from 1 September 2016. Bydureon is a once-weekly injection used in conjunction with oral medications for people with type 2 diabetes.

Fun fact: Bydureon is the brand name for exenatide, which is a synthetic form of a substance found in the saliva of a lizard – the Gila Monster. (Please can we talk about how someone worked out that this would be a good treatment for diabetes?)

News from ACBRD

The team from the Australian Centre for Behavioural Research in Diabetes don’t sleep. At least, I am pretty sure they don’t. My office is on the same floor as them and I can tell you that I’ve never seen any of them asleep at their desk. Instead, they work really hard and produce things like these:

The latest about the MILES youth survey – the survey methods and characteristics – was published this week.

Centre Foundation Director, Professor Jane Speight, is straight talking at the best of times, and her commissioned article published on Monday in the Medical Journal of Australia pulls no punches in putting forward a strong case highlighting the need for behavioural innovation in the treatment of type 2 diabetes.

Dr Jessica Browne from the Centre has been leading work on diabetes and stigma, and this piece published recently in Diabetes Care is about the development of the Type 2 Diabetes Stigma Assessment Scale.

Over-achievers the lot of them. And how grateful I am! (If any of you are reading this, stop it now and get back to work!)

AADE / DSMA / diaTribe / Language

I cannot even begin to express how excited I was last week to see so much focus on and discussion about diabetes and language at last week’s American Association of Diabetes Educators conference.

I sat in my office in Melbourne last Friday morning in tears as on the other side of the world in San Diego (where it was Thursday evening) Cherise Shockley directed a tweet chat about language and diabetes. (And a huge thanks to Cherise for reaching out before the chat!)

In this piece from diaTribe, Kelly Close also wrote about language. Check out this BRILLIANT ‘Diabetes: Starting the Conversation’ infographic. I love this SO much!!

Rachel Soong Diabetes Infographic

Rachel Soong – Diabetes Infographic @DiaTriibeNews

 Molly’s blog

I am always on the lookout for diabetes blogs to read and share and this one is just brilliant! Molly Schreiber’s blog, And Then You’re at Jax, is about living with not only type 1 diabetes, but also rheumatoid arthritis. (Another one of us who collects autoimmune conditions…)

For beautiful, sensitive and honest writing, this is where it’s at! Check it out here.

ADS ADEA next week

Next week is the Australian Diabetes Society – Australian Diabetes Educators Association Annual Scientific Meeting on the Gold Coast. Program is live here.

I’ll be writing and tweeting from there for a couple of days next week. Keep an eye out on the #adsadea2016 hashtag to follow along!

New resources for young people from the NDSS

There is little more satisfying that seeing the end result of something that has taken a lot of effort, time and expertise. I am thrilled to show off these beautiful resources that have been produced out of the NDSS Young People with Diabetes Program that I manage as part of my day job.

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They look beautiful (the graphic designer is an absolute gem!) but even more importantly, they are full of important and useful information

An online version of Mastering Diabetes can be found here.

And an online version of Moving On Up can be found here.

More about the inclusiveness of the DOC…

My post about the DOC from earlier in the week has generated a lot of really interesting and valuable comment, both on this blog, on Twitter and Facebook and with many messages sent to me privately. Thanks to everyone who has contributed and, mostly, thanks to everyone for being so positive and respectful in their comments.

The purpose for writing was to try to encourage a discussion about how and why some people feel more included than others. I know this is not the first time this has come up and I doubt it will be the last.

I have noticed some common themes in how people feel and am trying to write something about that, but keep feeling clumsy and inarticulate. I’ll keep trying and see if I can make sense of anything – mostly in my head!

Banjos, banjos, banjos

Last week I went to two concerts at the stunning Melbourne Recital Centre. Both showcased banjo players and both were brilliant. One of the concerts was TWO banjo players and nothing more. I don’t know who I am anymore…

But I can’t stop listening to this at work.

And this.

The Melbourne Recital Centre stage ready for Punch Brothers.

The Melbourne Recital Centre stage ready for Punch Brothers.

I’ve been interested to read a few things lately on Twitter about the DOC not being a particularly welcoming environment. I am both saddened and surprised to hear that some feel that way, because I have always found the community to be very, very supportive and welcoming. Perhaps I am fortunate, or perhaps I have just found – and engage with – people who are friendly and happy to embrace new people in the community.

I’m unsure if feeling unwelcome is because there is a sense that the community may be a little like a high school clique. There are people who have known each other many years in this space, so they have a comfortable and easy banter as they share stories and inside jokes. I know that when I started, I was worried about that, but anytime I tried to engage, I found nothing other than friendly responses.

When I first walked into the DOC playground a few years ago now, I was considering starting a blog after years of reading what others were saying about their lives with diabetes. I’d lurked around a few online platforms to see how people interacted and what people said.

Then, one day, I decided I would join a tweet chat, and I tentatively said ‘hello’ to the #DSMA world. The rest is history and now I am a regular contributor and participant – both online and off – in the community.

But it did take me a while to understand the lay of the land and to get a handle on online communication. Trying to adequately put across a point in 140 characters or fewer leaves little room for qualifying comments, so often it’s only the bare bones that can be offered. This can sometimes leave people feeling a little taken aback at the directness of discussions.

I am, by nature, very direct. I take the ‘tell-me-what-I-need-to-know-and-leave-it-at-that’ approach, so Twitter is a perfect platform for me. Say what I want and get out! But I know that sometimes, I come across as being very direct; some may even say confrontational. People who meet me after having only engaged on Twitter say they are surprised that I am a lot warmer in real life that online. (I never know whether to apologise or say thanks to that…)

I had to learn that just because people had differing opinions didn’t mean that they were attacking me, or that I wasn’t welcome in the discussion. In fact, some of the people I respect most in this community are people who I don’t usually agree with. They challenge me to think about things differently and to step out of my comfort zone. I’ve engaged in some really robust and heated discussions about different aspects of diabetes. As long as it is done with respect, (and an understanding that an opposing opinion isn’t a character flaw!), I’m happy to not agree.

And, possibly most importantly, I learnt that I didn’t need to love everyone in the community. I’ve written about that before, and how it came as a huge relief when I realised that I wasn’t going to be friends with everyone; there would be some people I just didn’t really feel any connection to – just as there are many who don’t gel with me.

The DOC is a big community; there are many of us. And when there is a community, there will always be people who are more vocal and more active. But they are not the only people in the community. It really does come down to finding people where there is some sort of synergy, or some way to connect. Just like in real life!

So what’s the take away from this? I hate for people to feel that they can’t be part of the community because they have a different view to others. I have not come across another person in the DOC who I agree with all the time.  But equally, I’ve not ever had someone attack me for having a different opinion to them. (Trolls excluded in that last comment, because trolling is attacking and just not necessary.)

I guess the struggle is that when you have a lot of very passionate people given a microphone and a stage, we get very, very worked up at times and defend our position fervently, challenging those who don’t agree, building alliances with those who do. We can be a vocal bunch, we like to be heard and listened to, and we want to defend, defend, defend what we say. I am guilty – if that is the right word – of being and doing all these things.

But I genuinely do want to hear from everyone. I don’t have to agree, or even like, what you are saying, but I want to hear it. Any community is stronger with diversity of opinion, experience and outlook. And the community is weaker when people do not feel that they are free to share their thoughts.

I had a call the other day from one of my favourite diabetes HCPs who is writing about diabetes and female sexual health. I wanted to shout ‘Halle-fucking-luiah!’ but didn’t because I am polite and never swear.

Anyway. The reason I was so excited to hear this is because when it comes to diabetes and sex, women rarely get a look in. Let me reframe that. When it comes to information about diabetes and sexual health, women rarely get a look in. (Hopefully women with diabetes who are wanting sex are getting plenty of looks in…so to speak…Yeah, this is not going to be awkward at all, is it?)

When talking about the complications of diabetes, erectile dysfunction*** frequently is mentioned. It is actually one of the things that often get men to the doctor because, well, because…erectile dysfunction. There is information about it and it is a well acknowledged complication of diabetes in men.

But women also report problems with sexual function, yet there is very little information about it and it is spoken about very, very rarely. Or, when it is, it’s discussed around changes in sexual function relating to menopause, which may be an issue for all women – diabetes or not. I guess the thinking is that ‘this is when it is likely to be a problem, so let’s talk about it now’, which doesn’t really help those who may have concerns with sex and sexual function earlier than menopause.

So today, let’s talk about women’s health and diabetes – all of it, including the sex stuff.

(For the record, there is no kissing and telling in this piece. There will be no personal sharing of sex stories. This is for everyone’s benefit! Plus, I learnt that it is not cool to discuss my sex life in a public forum after I once mentioned in a talk to a group of first year med students that I hypo pretty much every time after sex, and then made some silly comment about it being because my partner was so good in bed. This would have been fine if it all stayed in the room. The next night, when out for dinner, a group of Uni students came up to me and told me that they had been at my talk the day before and it was great. Then they looked at my husband who was innocently eating a plate of pasta and one of them said ‘Well done, mate.’ I was mortified. Anyway, let’s move on…)

So, what is out there now for women who want some information about diabetes and sex? Well, while working at Diabetes Victoria we developed a nifty and gorgeous looking booklet which talks about contraception choices. It’s called Sexual Health and Contraceptive Choices for Young Women with Type 1 Diabetes, and I can’t for the life of me find it online, but if you can get a copy, it’s terrific!

There are also some great Australian resources available on diabetes and pregnancy – both for women with type 1 and type 2 diabetes – which provide information about pre-conception planning as well as what happens after conception, during the pregnancy, during delivery and post-partem.

There is some (limited) information about diabetes and breastfeeding. (So wish there had been more eleven years ago because, seriously, I bumbled my way through for almost 24 months and it was horrid at times, diabetes-wise…)

But where is the stuff about everyday diabetes and women’s health and sex – not necessary tied up with trying to get pregnant. (We’ll ignore the ‘tied up’ comment there, okay?)

On the day I was diagnosed, a lovely diabetes educator told me that sex is exercise. Exercise often causes hypos. Hypos are not fun. Not fun kills the sex stuff. Moral of story – keep jelly beans beside bed. I was terrified that I was going to pass out during sex and that it was going to be unpleasant for everyone involved. (Not that there would be a cast of thousands…)

Yawn – it was boring information and it made me think that in future, sex was going to very unsexy. What I wanted to hear was ‘you absolutely can still have sex and, if you want to, you absolutely should. There are some things you might want to consider such as the possibility of going low… I’m talking about your blood sugar, get your mind out of the gutter, Renza, and wipe that smile off your face… so Nutella body paint is a good idea.

Now that would have made me smile, think of Nutella as a medical necessity and therefore how diabetes now justified me keeping a jar of Nutella by the bed. And on the kitchen table. In the bathroom… basically anywhere! As an emergency contingency, of course.

No one ever spoke to me about what orgasms may do to my BGL. Nor was I told much (in fact, anything!) about how high BGLs might impact on sexual function.

And then there is the minefield that is body image and diabetes, and thinking about how we feel about ourselves and its impact on how much we want to have sex. Or how it makes us  feel when we are actually having sex.

Plus, the visible signs of out so-called invisible illness impact on how we feel about undressing in front of someone. I have scars all over my abdomen and hips from heeling pump sites. There is usually a CGM sensor strapped to my arm and a pump cannula in my tummy or hip. There are dregs of tape from old sensors and sites and sometimes tiny bruises. There are tubes and a little vibrating machine (pump, people…I’m talking about my pump).

All of these things point to the fact that I am not perfect and that my body is not perfect and that I need devices and drugs to keep me ticking along. This makes me feel crap at times, wonder what my partner is thinking and want to hide all the reminders that I am not a perfect woman away. This sucks even in my situation where I am married and have had the same partner since diagnosis. Add to that the idea of exposing and explaining all this to someone new and you bet that will impact on how one feels about one’s body and the very idea of sex.

I remember being warned a million times about how women with diabetes MUST PLAN PREGNANCY. And this is excellent advice. However, it made me so terrified of getting pregnant with a sub-perfect A1c. I learnt that fear is an absolute libido-killer. Even when pregnancy would have been welcomed, I was terrified to fall pregnant before I’d been given the green light by my endo.

…which for a while made me feel like there were more than just the two of us in the room trying to make a baby when we were…well…trying to make a baby.

My diabetes loomed overhead, and every moment, I was petrified of my BGL. I started pondering ridiculous things like ‘If I conceive right now and my BGL is not in range, what will that mean? Is it possible that my baby may not have eyelashes if that happens?’ Way to go being drawn out of the moment and into a weird space of imagining babies without eyelashes and how they would hate me forever and ever, and never be able to wear mascara.

So, who do you talk about if you want to have a chat about diabetes and sex? I have never ever been asked about my sexual health from any of my healthcare professionals. Of course there have been discussions about contraception and pregnancy planning and actually being pregnant. But no one has ever said ‘Does your diabetes in any way impact on how you feel about sex? Or do you think diabetes might impact on actually having sex?’

For the record, (and this is a personal bit), I did find that my attitude to sex changed after I was diagnosed. I am sure that was connected to how I felt about my body, so there was some psychological stuff I needed (and continue) to work through, but there was also a noticeable difference in actual function and how I felt. I couldn’t find any information about it, so naturally, thought it was just me.

Of course, it wasn’t. And as soon as I spoke to a group of women the same age as me who were all experiencing similar things, I felt heaps better. But it took me a long time to find those women and feel comfortable speaking about it (yay for prosecco!).

I don’t really have any answers in this, but I wanted to write to start a discussion. I know of many women who say that they believe diabetes has an impact on their sex life – both physically and emotionally. Also, I have come to understand that if it is an issue for one, it is usually an issue for many. Anything anyone want to share? Feel free to do so – anonymously if easier.

***LANGUAGE DIGRESSION

Erectile DYSFUNCTION? Can we please come up with a different term for this? Dysfunction sounds like failure – or at least like a penis has failed. It has not.

Overdosed on all the carbs!

By the time I walked into the office yesterday, I was ready for the day to be over. Horrendous low on my way in (seriously, I hate the two-hour warm up phase when I put in a new or restart a Dex sensor) and the frenzied, gluttonous consumption of as much glucose as was in my car. (For the record –  two juice boxes and large packet of jelly beans.)

A morning mountain of sugar does not start the day at all well with the overdose of glucose pulsing through my veins turning my muscles to lead and my brain to pulp. And it continued throughout the day, with reminders of the rotten start peppering my day, all the way to bedtime when I found four rogue blood glucose strips stuck to my body. They fluttered like butterflies to the ground when I took off my bra. (That sounds a lot prettier and more delicate than it actually was.)

Hypo mornings are the worst. Especially when they involve the guzzling of the equivalent of my body weight in glucose.

I arrived at work 15 minutes late for a meeting, covered in sweat, hair plastered to my head and my sunglasses skewwhiff on my head. Nothing says ‘I’m-ready-for-the-week-and-to-be-a-smart-sassy-expert-contributor-to-an-important-meeting-with-important-people-and-yes-of-course-I-know-what-I-am-talking-about’ like post-hypo glow.

These days start badly. And don’t end well. I take a ‘begin as I mean to go on, and go on as I began’ approach literally, and figure that if beginning with a carb load suitable for an Olympic marathon runner the day before race day, then I may as well keep it up and compete in my own little Olympic challenge: the carb race.

I mean, why not eat a doughnut or two for breakfast next, right? Or waffles with jam AND syrup AND whipped cream?

And of course, I’ll have morning tea. ‘Biscuits,’ you say? ‘I’ll take six…teen,’ I respond.

Sushi rolls for lunch, because today is not the day to work out how to bolus for white rice and who cares anyway?!

It would be rude to say no to the brownies on the counter of the café next door to the office that I am visiting for the fifth time because caffeine is the only thing that is making me remain upright and remember how to string two words together that actually make sense. (So: ‘Yes, another milky coffee please. And sure, add sugar! All the sugar!’)

Pasta for dinner with more pasta and then add some pasta on the side because carbs, carbs, carbs. And the chocolate chip cookies that the kidlet made over the weekend as treats for her school day lunchbox make excellent treats after dinner for carb-mummy.

And while this is all going on, I am bolusing, bolusing, bolusing; insulin stacking, insulin stacking, insulin stacking. And chasing my tail because of course I end up low and then high and then low.

I know, I know. I didn’t need to keep the high carb day going after my breakfast hypo. But sometimes, when the days starts off going to hell in a handbasket, sometimes, I can’t work out the way (or be bothered) to salvage it. And I wonder what is the point of limiting my carb intake for the rest of the day if the floodgates were jammed open before 9am.

I climbed into bed last night exhausted. Exhausted from the low that started the day, the sluggishness of so much glucose still in my system and a day of peak-and-trough glucose levels that always make me feel listless. I said a silent prayer to the diabetes angels to please, please, please let me sleep through the night and not be up all night weeing out the sugar due to the glucose overdose, or needing to treat a low due to the likely insulin overdose. I pleaded for balance and flat-lines and an absence of alarms.

I woke this morning with the slight hangover the comes from too much sugar and a day on a rollercoaster. Waves of nausea wash lightly over me occasionally, reminding me of the day before. Delicately, I am stepping through the day. Watching my CGM trace, reacting gently, eating cautiously, dosing warily. And cursing diabetes. Completely and utterly inelegantly.

She called me because someone had told her to get in touch. ‘Speak with Renza. She gets it.’ Is what she was told. She we organised a time to meet and over coffee we talked. And she searched my face for reassurance as she told me how scared she was feeling.

When I meet someone who has recently been diagnosed with diabetes, I say very little. I listen. I ask questions and gently try to find out what is going on in their head. I don’t say much about my own diabetes, because I don’t want to imprint my experience in their mind. Everyone feels different at the time of diagnosis and working out exactly what they are feeling needs some time.

I listen and sit there quietly and try to reassure and be positive. I nod a lot, and let them talk and vent and, if they need to, cry. Usually people cry. And I let them know it is okay. I did all of this with the woman who called me. She did cry and she did vent. And then she cried some more. And I said hardly anything.

But this is what I wanted to say:

  • It is okay to feel scared and uncertain. Or angry. Or completely and utterly ambivalent.
  • Because, you see, there is no right way to feel right now – or ever – about living with diabetes. And equally, there is no wrong way to feel.
  • You don’t have to work this all out this week. Or next week. Or next year. In fact, you never have to work it out.
  • But do work out what you can manage today and do that. And whatever it is, it’s enough. It. Is. Enough. And well done you for doing it!
  • Find your tribe. In fact, this is what I want you to know more than anything. Others who are also ‘doing diabetes’ will help you make sense of this new world. You have to be ready to do that, but do be open to the idea. I wish that someone had introduced me to others with diabetes when I was first diagnosed. It took me over three years to meet another PWD and I felt so alone in those three years.
  • And when you do meet people, don’t think that anyone has this diabetes thing worked out completely. Even those who say they do…
  • …because, there is always more to learn, which is daunting and exciting in equal measure.
  • I promise you – whatever you are feeling, whatever you are thinking, someone has had that same feeling and same thought. You are not alone. (Reading diabetes blogs will prove that to you!)
  • Diabetes may feel like it is about to take over your life and it probably will for a little bit. And there may be times that it does again. But it will not define you for the rest of your life or determine who you are. It can be as much or as little of your identity as you choose to let it.
  • You will be okay. You will be okay. You will be okay. (And, yes, I am saying that for your benefit as much as my own!)
  • There will not be a cure in the next five years. Or even ten. I am not saying that to be pessimistic, I just want you to understand that hope is really important in living with diabetes. But unrealistic expectations that won’t come true are not going to give you that hope; they will destroy it.
  • Ask questions. All of them! You may not like the answer (i.e. see previous dot point), but ask anyway. You will be amazed at the things you learn.
  • Your diabetes; your rules. This will become more and more apparent the longer you live with diabetes. You don’t need to explain, apologise or justify anything you do to manage your diabetes. Ever.
  • Anyone who makes you feel crap about your diabetes – whether it be the fact you have diabetes, or how you are living with it – needs to fuck off. (And if you can’t tell them that, find someone in your tribe who can! I am happy to be that person. Truly! I have the mouth of a trucker and I’m not afraid to use it.)
  • Right now, this probably seems like it is the worst thing that will ever happen to you. This may sound odd, but actually, I hope it is. Because I know you can get through it.
  • You will laugh again. And smile and feel light. You will not think about diabetes for every minute of the rest of your life. It will be there, but it does not have to rule your very being. It certainly doesn’t rule mine. You will learn where to place it in your world, and that is where it will sit.
  • You do not need to feel grateful that you have been diagnosed with diabetes and not something else. Because it does suck. It’s good to remember that and say it every now and then. Or shout it out. While drunk.
  • Go buy a new handbag. Trust me! If you want, I can help you to justify it as needing a new bag to cart around all your diabetes crap, but just do it for yourself. And while you’re at it, a new pair of shoes. Just because!
  • Call me. Anytime. If you want. Only if you want. And even if it just to hear me tell you that you will be okay.

But I didn’t say those things. I only said this: You will be okay. I know this to be true because you are strong and resilient and capable. I know this to be true because many others have walked this path and worked out how to make it okay for them. You will do that too. It will be okay for you.

And I hope that was enough. Or, at least, enough to start with.

I was super late for last night’s #OzDOC tweetchat, coming in for the second half of the lively discussion. The questions were about how HCPs can engage on healthcare social media (HCSM), and the answers were to assist physician Dr Kevin Lee who is presenting this very topic at the ADS-ADEA conference on the Gold Coast later this month.

In recent years, I have given and heard many talks about why HCPs might want to consider using SoMe as a tool to engage with PWD (or, more broadly – people with any health conditions), and also how they may find SoMe useful to engage with other diabetes HCPs.

Presenting at the 2013 ADS-ADEA meeting about social media and healthcare.

Maybe it’s just me, but I am bemused that usually these presentations are targeted at such an ‘entry’ level. Social media is not new. Healthcare social media is not new. And yet, the presentations about HCSM at most medical conferences all have a ‘101’ feel to them, as though it is emerging technology and a revolutionary and new way to communicate. It is neither of these!

In fact, communities gathering on social media is just peer support 2.0. (Which is what I wrote here. Three years ago….)

And yet, the anxiety around it is still present.

I suspect that there are several reasons for this nervousness.

Firstly, by its very nature, SoMe is unregulated, and I will fight to the death to say this is a good thing, not something to fear. Its organic, unstructured and unpredictable nature is part of its power.

Even in a facilitated forum, (such as as tweetchat), there is only limited control held by the moderator – and a good moderator knows that their role is sometimes to sit back and watch (and encourage) the flow of, and tangents in, the discussion – that is often where the magic happens!

HCPs considering venturing into the patient-held HCSM space (different from interacting with their peers) need to consider what they plan to do once there. Are they going to be providing advice? Or do they want to engage in discussions?  Perhaps they just want to quietly lurk, using it as a learning experience.

Whatever they choose do to, simply stepping in and having a look around will, hopefully, alleviate many of the concerns and fears they have about HCSM – especially once they understand there is no mystery to this way of communicating.

But I really do think that it is not our role as PWD using HCSM to provide a comfortable space for HCPs. And we shouldn’t feel the need to moderate our discussion for fear of who is listening in.

I have always considered social media to simply be a different way for having a conversation. There is no mystery behind it and there is nothing to fear. This thread from last night’s tweetchat sums this up perfectly! (Thanks, @MelindaSeed!)


 

 

 

So this happened….

Yesterday morning, we got up bright and early to join the excited witches, wizards and muggles for the 9.01am launch of the new Harry Potter book.

And as we stood there in Carlton, on the cold Winter weekend morning, memories of the other times we did that flashed through my mind.

I have a lot of Harry Potter themed memories. It was my mother-in-law who first introduced me to the books. She had become hooked after reading the first three, and one long weekend when we were visiting their farm, she suggested I read them. I don’t think I moved from sitting in front of the open fireplace for the rest of the time we were in Mansfield, speeding through the chapters at the rate of knots. Aaron read them as soon as I finished and together, we became hooked on the story of the ‘boy who lived’.

The fourth book had just been released, so as soon as I finished the third book, I bought a copy of that and caught up. And started the count down until the launch of the fifth book, re-reading the already released books in the lead up – a tradition that would precede the big launch day of subsequent instalments.

The launch dates of the remaining books were marked in my diaries and on the day, I’d push little kids out of the way to get my pre-ordered copy, spending the rest of the day cuddled up on the couch ploughing my way through, refusing to even glance online for fear of spoilers!

In November 2001, I counted down until the first movie came out, lining up the opening weekend to see if the film came close to capturing the magic on screen that had leapt from the pages of the books. I loved it, just as I did all the films.

In London a couple of years ago, Aaron and I (without our kid – excellent parents!) spent a day at the Warner Bros Studio where much of the movies had been filmed. I burst into tears as I turned a corner during the tour to be faced with a scaled model of Hogwarts. We drank butter beer, rode broomsticks and flew above the trees in a Ford Anglia.


And then there was the delight and beauty of introducing our daughter to Harry Potter and watching her discover the world into which I had escaped years earlier. We loved seeing her fall in love with the stories and get carried away with the characters. Nights become a battle ground as we caught her reading with a torch under the doona after lights out because she was desperate to keep turning pages…

She loved the movies too when she was old enough to watch them – and after she had already read the books. That’s the rule in our house: books before movies!

She has other Harry Potter memories too – not only the books and the movies, but also dressing up as Hermione during book week when she was Year 1, and a visit to the Wizarding World of Harry Potter at Universal Studios in Orlando last year.

And now she will remember the launch of the eighth book where she was an active participant. She has heard our tales of the excitement of launch events and yesterday, she got into the spirit of the occasion, standing out as the only Bellatrix Lestrange in a sea of Harrys, Hermiones and Rons. (Very proud parenting moment!!)

I love that she has memories of Harry Potter and I wonder if these will be the occasions that stand out in her mind when she grows up and looks back on her childhood.

She has had some pretty incredible experiences that have made for pretty magical memories. Where does mum having diabetes fit in there? She asks me a lot of questions about diabetes that I try to answer as honestly as I can, but there is so much I want to shield from her – or at least, not have her think about.

A while ago, she asked ‘Is diabetes scary?’ and I paused before answering ‘Sometimes, but not too much.’ The truth is that it scares me senseless a lot of the time, but I don’t want her knowing that. I know I am not alone in this. My mum still tries to downplay things if she isn’t feeling great, and I am now over 40 and far less easily fooled by her ‘putting on a good face’ routine. Although, maybe I just tell myself that our 11-year-old can’t see through my lies about how I feel.

When our daughter is an adult and remembering her childhood, I don’t want her to think about diabetes. I don’t want her to think about me having to stop to deal with a ‘diabetes thing’.

I want her to remember the hours we spent reading, watching and talking about Harry Potter and having ridiculous discussions about who we would be if we were characters in the books. (I can tell when she is annoyed with me – then she says I remind her of Dolores Umbridge!)

Diabetes doesn’t get a look into our world of Harry Potter. In that world, there is no diabetes; there is no fear of complications; there are no scary lows or nasty highs. In that world, I don’t think diabetes. Because, those things don’t exist. There is magic. Only magic.

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Read about Renza

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