Diabetogenic

I need help

May 5, 2015 in Awareness, Diabetes, Mental health, Wellbeing | 12 comments

Yesterday, as I sat in the waiting room to see my endo, I couldn’t help but feel that I was walking into a wasted appointment. I had seen her about six weeks earlier and left with promises to myself of being more engaged with my diabetes care. I promised I would have my blood work done. I thought about goals and how I could work to achieve them.

And yet, there I was, waiting to go in and wondering what the hell I had to say to her. There would be no discussion of lab results. I haven’t gone to pathology to have the checks done. There wouldn’t be any pulling out of data for me to show her – I hadn’t been logging anything. I was pretty much in the same state of mind about my diabetes as I had been last time I sat waiting to go in to see her.

I was wasting her time and I felt really bad about it. Not that she would ever tell me that. In fact, not that she would even be thinking that. But it’s how I felt. I have such respect for this endocrinologist, and I felt that in some ways I was actually being disrespectful in showing up so unprepared.

There were no tears yesterday. But there was an honest and open admission from me that I need help. I have tried everything I know to try and pull myself out of the motivation slump I have been in for so long. There are been periods where things seem to be better and I am able to make more of an effort, but they are fleeting and before long, I am back to feeling burnt out.

Let me be clear – I am not completely ignoring my diabetes. I am bolusing insulin at all the appropriate times; I check my blood sugar, albeit nowhere near as much as I know I need to – or that I would like to; I have started seeing my endo again. I eat well. At no time has diabetes completely fallen off the radar. But it certainly has deviated from being as much of a focus as I would like.

It’s not the mechanics of diabetes that is the problem. It is the trouble-shooting and problem solving and thinking about diabetes in a way that makes me feel confident that I am dealing with my health and wellbeing as much as my blood sugars. But I’m not doing that. I’m in a fog of burnout from which I now know I am unable to emerge without some real help.

I can pinpoint the source of the burnout; I can trace its progression; I can see why it happened. I understand all of that. I understand that dealing with the loss of our baby following a miscarriage and all the things that happened around it were often all I could deal with – both at the time and for periods since then too. But even though I have words to explain how this has happened, I don’t have actions to get me out of it.

I’ve tried. I’ve tried everything I could think of – all the techniques that have worked in the past. But I suspect that the combination of grief and the longevity of this burnout have resulted in me simply not being able to fix it alone. I need help.

I also believe that tied up in all of this is the way that I am feeling about my body and its failings. Because I do feel I have failed. Or at least my body failed me – again – when I miscarried. I really did think that I was ‘over’ it and was moving on, but not a day goes by where I don’t, in some way, feel sad and broken about it. I don’t know how to stop feeling this way. Again, I need help.

So, I asked for a referral to someone who can help me work though things – someone to help with strategies. I have been in therapy before; I know that it will help. It’s not a quick fix – I know that too.

I am trying to be all Pollyanna-ish about this and make grand ‘the first step is the hardest’ statements. And I am being positive and saying that it is certainly a step in the right direction. It’s going to take time. It’s going to take effort. Perhaps I am ready for that now. I know I certainly haven’t been to date. But maybe – hopefully – I am now.

Messaging….

May 4, 2015 in Advocacy, Awareness | 2 comments

I’m back on the bandwagon today. Or back on my high horse. Or back on my soap box. Whatever analogy you want to use, I’m on something. But I’m always on message!

Last week we heard a story of the tragic and just so very sad death of a beautiful little boy with type 1 diabetes. According to media reports, seven year old Aiden Fenton, who had type 1 diabetes, was taken, by his parents, to a hotel in Sydney, where he was denied food and insulin and slapped repeatedly as part of a barbaric treatment meant to cure him of his type 1 diabetes.

This is a tragedy. There is no other word for it.

The theory behind this brutal treatment is that repeatedly slapping the body builds heat, which will allow ‘chi’ to flow which results in toxins to be released. This will, apparently, cure what ails you.

And while this may be the extreme, what we have here is yet another example of ridiculous assertions by people claiming to have an understanding of health and wellbeing. But there is no understanding. There is no science behind these claims. There is no evidence to suggest that they work.

There’s that word again: ‘toxin’. It’s a favourite with many wellness experts and Instagram diet and fitness frauds who seem to have forgotten that the body has a fabulously powerful and clever organ called the liver. They should Google it – they’ll get pictures to go with explanations of the role this organ plays in the body and its connection to ‘toxins’. Pictures like this one:

detox liver

You’re welcome.

Thankfully, there are others – many others – much smarter and with much better reach than I asking questions and calling out these dangerous cults.

Yesterday, the CSIRO (I think we can pretty much bet they are all about science) tweeted this.

CSIRO tweet.png

Yes please; I’ll take one in a 10.

Helen Razer wrote a fabulous (and very swear-y) piece a few weeks ago about the stupidity of the paleo movement and other dangerous messages being regularly expounded by equally dangerous idiots wellness experts. You should read it (language warning again in case those sorts of things offend you.) My favourite line is the caption used under a photo of Pete Evans: ‘Stupid is the new science’. Yes – I want that on a t-shirt, too.

And take a few minutes – well ten and a half – and watch the brilliance of Tim Minchin with this fabulous animated short of his poem ‘Storm’.

Minchin first wrote this as a jazz-backed beat poem for a live show. From there, it was the animated short was made and, most recently, a graphic novel which I’ll be purchasing next time I head to my favourite books store, Readings. You can read how the poem came about in this piece Minchin wrote for The Guardian.

Yes, I know. I keep harping on about the same things. But alternative therapies and the ‘wellness movement’ are responsible for a little boy’s death. They fuel eating disorders, they confuse people, they deliberately and intentionally target the vulnerable who are desperate for answers and cures. And there is no evidence to support that they work in any way. In fact, they harm. A little boy is dead. Just keep thinking about that.

Celebrations

May 1, 2015 in Awareness, Mental health, Stigma, Wellbeing | Leave a comment

ACBRD5 Last night, I had the privilege of attending the fifth anniversary celebrations for the Australian Centre for Behavioural Research in Diabetes. The event was held at my favourite Melbourne building – the State Library – so I was able to get my geek girl on and wander the stacks before heading to the reception.

I have written frequently about the ACBRD because I am a huge fan and supporter of their work. Before the Centre was established, there was very limited attention being given to the psychosocial impacts of living with diabetes. Diabetes was presented as a numbers game. People with diabetes were talking about what living with diabetes actually meant – we understand the day-to-day implications and the distress and the burnout and the fear and the anxiety. But there was no one dedicated to researching these things.

Much work has been completed since the Centre started. All of it is of great value, but there are certainly some stand-out pieces for me:

The Diabetes Australia Language Position Statement, led by the ACBRD, which was launched back in 2011, is a much-needed ‘guide’ to assist journalists and HCP understand how to speak about and to people with diabetes. I can’t think of the number of times I have emailed, tweeted, handed-out a copy of this report to someone who has referred to PWD as non-compliant, a ‘diabetes sufferer’ or something equally damaging!
Dr Jessica Browne, Research Fellow, has been leading a world-first program researching the social stigma of diabetes. Reaching far and wide (Washington Post, anyone?) it is so wonderful to have evidence supporting what we have heard from PWD for so long – diabetes is stigmatising and that we often feel blamed and judged for having this condition. I’ve said it a million times and I will continue to say it until the stigma stops – ‘No one asks to get diabetes.’
The Diabetes MILES report still remains an important body of work. It was the first time that the psychological wellbeing of people with diabetes was investigated and the results confirmed what people living with diabetes already knew – emotional problems associated with living with diabetes are common, considerable and a very real part of living with diabetes.

The thing I love about the Centre is that in addition to conducting research and publishing articles, they actually provide practical tips and advice to HCPs about how to address these issues and concerns. And most pleasingly, they speak directly to and consult with people with diabetes.

As I explained in my talk last night, I have been lucky enough to present alongside Foundation Director Jane Speight on numerous occasions. The way this works is that I get up, rant, rave, wave my hands around and talk about the ‘living with it’ experience and then Jane gets up, speaks incredibly eloquently and provides the evidence to support what I have said. (So, thanks for making me look good, Jane!)

The always eloquent Professor Jane Speight. And me. Waving my arms around.

It was an honour to be able to celebrate the Centre’s first five years’ successes last night. Congratulations to all the ACBRD staff. Looking forward to seeing what you all do next!

One size fits no one

April 30, 2015 in Awareness, Reblog from Diabetes Australia - Vic | 3 comments

Jump over to the Diabetes Victoria blog where today, I have written about how ‘Choosing Wisely Australia’ got diabetes wrong with its diabetes recommendation.

But while you’re here, check out these headlines from the Daily Express. So, so many ways to beat diabetes! Who knew?

headlines

Consequences and actions

April 29, 2015 in Advocacy | Leave a comment

I spend a lot of time dealing with the consequences of my actions when it comes to diabetes. Here are three examples:

Action 1: forget to bolus

Consequence: stupid high BGL

Action 2: Bolus too much

Consequence: stupid low BGL

Action 3: eat Nutella straight from the jar

Consequence: much happiness. (Although if I forget to bolus for it, see Action 1.)

Sometimes, my actions are deliberate (see: Nutella). Other times, they are not (see: forgetting things).

There needs to be a little more consideration when talking about consequences because a lot of time, I see discussions about diabetes consequences that are very unkind. Just because you know what will happen when you do something, doesn’t necessarily mean you deserve for it to happen. And a lot of the time, we don’t know – there is no controlling the outcome of our actions anyway.

But the thing that I am really conscious of is that even if we know what happens – even if we know that the consequence may not be pleasant – we rarely wish for the consequence to happen.

This is particularly the case when talking about the diagnosis of diabetes. No one at any time of their life thinks they would like to be diagnosed with diabetes. At least, I’ve not met anyone who feels that way. I know of no one who has been thrilled and excited at the prospect of a life forever affected by a chronic health condition. There is no high fiving someone who has just told you that you have diabetes. There may be tears and anger and distress. Rarely would there be joy though.

The same goes when considering people diagnosed with diabetes complications. Whatever they do; whatever they don’t do. However they have managed their diabetes. Or not managed their diabetes. No one chooses complications.

I think that we need to remember this. We need to remember that anytime we say words suggesting people ‘deserve’ what happens to them, we are being unkind and we are being judgemental. And these are both things that have no place in diabetes.

More kindness less judgement

I wrote these words a while ago, and thought that it was a good day to post them.

My heart today is with the families of Myuran Sukumaran and Andrew Chan. These were young men who ten years ago did something stupid, stupid, stupid. No one is saying they are angels and no one is saying that they should not have been punished for their crimes. But the consequence of those stupid actions is not proportionate. They did something stupid. They did not deserve to die for it. #IStandForMercy

istandformercy

Bite me

April 27, 2015 in Devices, Diabetes, Real life | 4 comments

Today, diabetes can bite me. I changed out a perfectly good – and working perfectly – cannula this morning because it had been in for four days and I sometimes follow some diabetes rules.

Fresh out of the shower, I stabbed in my line and knew straight away something wasn’t right. I am more than used to (and expect) the little sting that comes with the introducer needle piercing my skin. But this one really hurt. And then when I primed one unit of insulin into the empty cannula it hurt. Really hurt.

So, I ripped it out. Which was a good idea! I present exhibit A:

Canula 1

This resulted in swear words galore because I am classy and a lady. I pulled another infusion set from the cupboard, ripped it open and shoved it in my skin. And again – ouch! I didn’t even bother to prime it – I just ripped it from my skin. Which again, proved a good idea. I present exhibit B:

Canula 2

Ripping this one out was fun. It bled. Down my leg and onto the floor. So I swore again (more classy, more lady) and cursed the diabetes gods and possibly stamped my foot. Actually, I definitely stamped my foot. And threw the useless thing across the room at which point the puppy thought it had a new play toy.

The next cannula went it without a hitch and is behaving itself. Third time lucky.

So, what did I learn from today’s exercise? Not much. Probably that I shouldn’t follow diabetes rules and should have left the four-day-old-slightly-manky-but-working-perfectly cannula in. Because nothing good comes from following rules. Yep. That’s what I’m taking away from this. Also, I need a cupcake.

Runaway train

April 24, 2015 in Advocacy, Awareness, DOC, Social media | 1 comment

If you have anything to do with diabetes and glanced at Twitter this week, it’s unlikely that you could have missed the juggernaut that was #IWishPeopleKnewThatDiabetes.

Wednesday 22 April was designated the day that the Diabetes Online Community would come together and share what we wish people knew about diabetes. We kicked it off with great force here in Australia and it took off like a runaway train from there! Late on our Wednesday night, I watched the US wake up and Twitter explode with the #IWishPeopleKnewThatDiabetes hashtag. I had to force myself to turn off my devices and go to sleep because I could quite easily have stayed up all night following.

I was amazed at the diversity of the things people were sharing. I found myself laughing out loud and wiping away tears at some of the things I read, and a lot of the time, nodding in agreement.

Critics of these sorts of activities say that they are a waste of time – that we are preaching to the converted and that it is a self-indulgent pity party. I say that’s rubbish!

Firstly, even if the majority of people who read the tweets are others with diabetes, why is that a bad thing? Building our community – coming together, supporting each other, listening to others’ stories – is how and why we become stronger. I had several people reply to my tweets telling me that they felt the same way. I did the same thing several times.

And there is absolutely nothing wrong with fist pumping and patting ourselves on the back for living with diabetes. Or saying it is tough. Diabetes does suck sometimes; it is difficult to live with; it is a shit. Acknowledging that doesn’t make us weak or pathetic. It doesn’t mean that we have given up or that we think that we have it worse than anyone else in the world. It is just saying how we feel.

I didn’t read all the #IWishPeopleKnewThatDiabetes tweets (there are over six and a half thousand of them!) but I did read a lot of them. I read tweets from people I know well and those I’ve never come across. I connected with new people and retweeted and retweeted and retweeted until I thought I was going to be sent to Twitter purgatory for a while and told to settle down!

Well done to Kelly Kunik who kicked this off last week. I don’t know that Kelly has had much sleep over the last few days. She seemed to be tweeting and retweeting pretty much around the clock! Kelly is a bit of a force of nature. I caught up with her and another DOC friend, Stacey, when I was in NY and the three of us spoke so much we forgot to eat. Seriously. We remembered to drink coffee, but somehow we didn’t remember to order lunch! Hope you’re getting some rest now, Kelly!

I couldn’t even begin to say what my favourite tweets were. Perhaps the ones that focussed on advocacy issues and dispelling myths. But every single one did resonate in some way – even if the experience was not the same as mine. I feel that I have a better insight into how diabetes affects people’s lives. I hope – and am sure – that others have walked away feeling the same way.

(To see the reach of the #IWishPeopleKnewThatDiabetes hashtag, click on this link. At the time this blog was published, it was up to almost 14,000,000 impressions.)

We added another SHAG print to our collection the other night after attending an exhibition opening at the fabulous Outré Gallery. We now have two huge artist proofs that are based on the fabulous Peter Seller’s film The Party. Dance your way into the weekend with the soundtrack here!

Justifying my existence

April 23, 2015 in Awareness, Social media | 7 comments

Most days, I write on this here blog about my life with diabetes. Sometimes it is light and fluffy and frivolous. Other days, I lay myself bare and write about things that affect my very core. I have written about things that have left me feeling quite vulnerable but they are part of living with diabetes – the serious side, the scary side, the sad side.

Everything you read here is honest. It is what is happening to me. It is how I see my life with diabetes. My interpretation may be completely different to someone else’s, but I write genuinely and as openly as I possibly can.

Yesterday, as confirmation of what I already knew to be true flooded social media platforms, I found myself incredibly angry.

I already knew that Belle Gibson was a fraud. I knew that her story of curing her cancer by eating well and using natural remedies was a load of rubbish. The same way that every other charlatan promising to cure you of whatever health condition you’re living with is complete and utter bullshit. Anyone who tells you that eating an organic/plant-based/paleo/carb-free/high carb/high fat/low fat/only kale diet can treat or cure you of cancer (or diabetes or anything else) is lying. That is all there is to it.

I’m not selling anything here at Diabetogenic. There are no cookbooks being flogged, no eight week program for you to sign up to, no magic ‘teatox’ I want you to buy to fix whatever is not working in your body. I’m not promising you anything other than a way to spend five minutes while you have a cup of coffee.

Yet I have benefitted from this blog. I have been asked to speak at conferences here and overseas. I have been invited to bloggers summits and to sit on expert panels as a consumer representative. I take these things very seriously. I have been afforded opportunities because what I write is considered to be of value to others either living with diabetes or working with people with diabetes. People take what I say here and believe it to be true.

And it is. But Belle Gibson has tainted the writings of every health blogger.

This goes beyond Belle Gibson. Every other wellness expert – all of them – should be held to account right now. I am talking about Sarah Wilson, Pete Evans, Vani Hari, Ashy Bines, and anyone else making health claims that cannot be substantiated by real evidence. THESE PEOPLE ARE DANGEROUS. Frequently, mixed up in their lies about their miracle cures are more lies about vaccinations and medications. They prey on people who are vulnerable and scared and desperate.

Today, I am furious. I am horrified that some people will lump me – and the people I know and love who write incredibly honest and worthwhile blogs about their daily lives with diabetes – in the same basket as Belle Gibson. I fear I will be tarred with the same dirty, lying, fraudulent brush. I feel the need to justify my writings and the very existence of this blog.

But I am not Belle Gibson. I am not lying to you. I am not trying to sell you anything. I just want to connect with other people who are living with diabetes. I just want to be part of a community of people who I can turn to for support and help.

Do not read diabetogenic today

April 22, 2015 in Awareness, Diabetes, DOC, Real life, Social media | Leave a comment

Go away. There is nothing to see here today.

Instead, enter #IWishPeopleKnewThatDiabetes into your search engine and spend the day reading about the things we all want everyone to know about diabetes.

This is the initiative of Kelly Kunik from Diabetesaliciousness. But don’t read her blog today either. You can do that tomorrow.

Today it’s all about this hashtag: #IWishPeopleKnewThatDiabetes

Go!

Advertising in diabetes

April 21, 2015 in Awareness, Devices, Diabetes, Real life | 10 comments

I could never ever work in advertising. A combination of cynicism and disbelief at anything I ever see in an ad would make me a difficult employee!

There is a very real gap between the truth of diabetes and what we see in advertisements for diabetes products. I frequently find myself shaking my head in disbelief at the way diabetes is portrayed.

This is what a stomach using an insulin pump looks like. That is my stomach (apologies if you are eating, drinking or just looking). Those dots are the ghosts of infusion sets past in various stages of healing. There is also probably some tape residue stubbornly stuck to my skin. Pretty (gross), isn’t it?

#NoFilter. Obviously

This is what a stomach in a pump ad looks like. Magically, any hint of previous infusion sites have disappeared.

ad stomach

This morning, here is what my meter announced my BGL to be. (Hashtag: fuckoff)

BGL real

This is what the reading on pretty much every box and poster of BGL meters looks like. (Hashtag: bullshit)

meter ad CGM graphs in real life look like the trajectory of rollercoasters with mountainous highs and cavernous lows, while the slick promotional materials show straight lines, nicely fitting in between the upper and lower alarm limits.

People in advertisements for diabetes paraphernalia are always outdoors, happy and rolling down hills, big smiles plastered on their faces. They wake up looking well-rested.

Real people with diabetes may spend time smiling and happy (I love rolling down hills – especially at this time of the year and getting all covered in Autumn leaves), but I’m putting it out there and saying that their glee is not because they have just done a BGL check. Unless the result is 5.5mmol/l. Each and every time. (See about meter photo. There was no smiling at that!)

I get it. No one wants to see my stomach on an ad for insulin pump therapy – that’s not selling units of product! But surely there needs to be a middle ground somewhere. I would like there to be an occasional BGL reading of over 15mmol/l on a poster for a meter. Because it happens. It’s not the end of the world and it doesn’t mean the meter is crap. And a stomach with a few pock marks from old infusion sets doesn’t reflect the quality of the infusion set. It reflects reality.

Diabetes isn’t pretty. It’s an ugly, scary and pretty un-fun thing to live with a lot of the time. That doesn’t mean that I spend most of my time in a ‘pity me’ funk, but I do admit – quite honestly – that it is shit at times. How about we aim for a bit of honesty and truth in diabetes advertising? Telling it like it is doesn’t mean we are weak or showing defeat. It’s just being authentic.