Diabetogenic

Language and food

May 9, 2014 in Awareness, Food, Language | Leave a comment

I’m on a bit of a language thing at the moment. (I should add that my language is pretty horrid a lot of the time. Current diabetes burnout combined with general feelings of exhaustion mean the f-bomb gets dropped far more than it should. Our swear jar is so full that it has become our daughter’s private school education fund. But, I digress…..)

Today though, I am writing about how the language of food sends us down a slippery slope of guilt and competitiveness.

We say things such as ‘naughty’, ‘guilty pleasure, ’oh, I shouldn’t’ or ‘I’ve been so good lately’ when talking about food. We say that food is ‘good’ or ‘bad’ for us.

No, it’s not. Food doesn’t have a moral compass.

Stupid comments like ‘a moment on the lips; a lifetime on the hips’ mean we feel guilty about having a piece of cake or a chocolate bar when we should just enjoy it for what it is – something sweet and delicious!

We start this when talking about the nutrition babies receive (thank goodness the babes in arms are unable to comprehend what we’re saying).’ Breast is best’, we’re told, and nutritionally that may be correct. But the demonisation of formula only makes those unable or not wanting to breastfeed feel they’re failing their babies. Although, that doesn’t last. I went from looks of approval and comments of ‘aren’t you wonderful’ for breastfeeding my daughter. Until she got to 18-months when suddenly I was being asked when I was going to stop.

In recent times, we’ve added ethical eating into the mix so the good/bad extends to more than health. Suddenly, we’re expected to feel guilty if we’re not eating and drinking ethically sourced foods and beverages. Are those apples organic? Is your coffee single origin fair trade?

Today, in The Age there’s an article about clean eating and what using this terminology hints at, saying ‘It implies that anyone who doesn’t eat in the way you deem “clean” is eating “dirty.”’

We detox, inferring that we are full of toxins. We’re not and suggesting that our body is a poisonous, polluted pit of impurities that needs to be exorcised is nothing more than a money making scam at best; a way of making us feel somehow unclean at worst.

Messaging gets confusing – think about how the I Quit Sugar movement has impacted on people with diabetes who already spend a lot of time ‘un-demonising’ sugar. ‘You should do that. It’s good for people with diabetes.’ I’ve been told several times. How? It’s pointless and just like every other diet craze. And mind your own business, by the way.

Reading about food used to be so much fun. The Magic Faraway Tree series included tales of pop biscuits, toffee shocks, lands where lollies grew on trees, and everywhere, oh everywhere, there was warm toast with lashings of butter. There were Mad Hatter Tea Parties, and Harry Potter feasts were full of Pumpkin juice and Butterbeer. Books such as Like Water for Chocolate describe dishes such as ‘quail in rose petal sauce’, and Chocolat sets scenes with ‘The air is hot and rich with the scent of chocolate’. Food is a celebration and joy and a delight. No one counts calories or promises to ‘be good tomorrow’.

I don’t think that we need to go so far as only using utilitarian words such as ‘fuel’ to describe food. But I do think it’s time we moved away from the judgement and the guilt-inducing rhetoric that accompanies the language of food.

Friday listening and dancing – James Taylor singing ‘How sweet it is to be loved by you’ which is for my beautiful daughter who means I get to celebrate Mothers’ Day on Sunday.

Defining Diabetes

May 8, 2014 in Advocacy, Awareness, Diabetes, Stigma | 4 comments

How do you describe diabetes? I vary from ‘an inconvenience’ to ‘an effing pain in the arse’ and lots in between.

I’m all about words. Language is very important to me and I spent a lot of time crafting messages about living with diabetes that balances the ‘this is shit’ component with the ‘this is just life’ side of things.

One of the reasons that getting the language right is actually not so much for the people living with diabetes – we know the details and we know the words we choose to describe it. No; it’s for others. Because when we get the language wrong, we start to open ourselves up. To discrimination, stigmatisation, misinformation and negative perceptions.

It’s for this reason that I refuse to use the word ‘disability’ when talking about MY diabetes. There is much written about and debating ‘is diabetes a disability’ and I am definitely not qualified to really enter this discussion in any other capacity other than ‘this is my opinion’. And my opinion is coming from someone who has 16 years of diabetes under her belt with no significant physical or mental complications because of diabetes.

However, my beautiful, gorgeous friend and neighbour Jo is an expert here, so I called her and yelled ‘help me understand this!’ Jo has type 1 diabetes (believe me – there is a blog somewhere about two people with type 1 living two doors down from each other….) and is a speech pathologist who has worked in the area of disability for a long time. She’s clever, compassionate, direct and doesn’t mess around with words. Jo will hate me for saying this, she has recently been recognised with a nomination for a life-time award for working in the field of disability. She’s more than kind of awesome.

Jo suggested I start by having a look at the World Health Organisation’s definition of disability. This sent me into a world of pain because there were words I simply didn’t understand when put with other words and you know, comprehension.

So, I yelled at her some more (it’s what people do when they don’t understand) and here’s what Jo said that made sense to a fool like me:

JO: Renza (you stupid chicken who may make decent brownies but you’re pretty bloody simple, really). What I’m trying to say is that the social model of disability says the disability doesn’t belong to the person with the condition (that would be considered the disability) – let’s say someone with cerebral palsy, for example. It belongs to the environment. The environment doesn’t allow for the disability to be accommodated. People with diabetes can accommodate themselves – carry or buy sugar if they are low is a basic example of accommodation.

RENZA: So, is it like this? The environment accommodates my particular needs. If I was sitting an exam, I could take time to check my BGL or treat a low or take an extra loo break if necessary. But if I had a condition that didn’t allow me to physically or mentally sit for the three hours required to do the exam or have the capacity to understand the questions being asked then I’d be considered as having a disability?

JO: You’re simple, but yes. Now go make me some brownies.

Of course, diabetes throws all sorts of things into the mix including complications that may result in disability. But for me as diabetes affects me now, there is no reason that I consider the fact that my beta cells decided to shut up shop and move to the tropics as a disability.

I see diabetes as a ‘delayer’ at times. There are times that RIGHT NOW it stops me doing what I want, but this is generally remedied quickly (sometimes, not-so-quickly) and I can do whatever it is I planned to do.

The reality of life is that people face challenges of varying degrees. I’m leaving the last word to the clever Jo who says: Some people have challenges that can relatively easily be overcome and others (perhaps someone with a profound and multiple physical and intellectual disability), can’t live, without considerable effort from their environment to keep them alive, and if they are lucky have some kind of quality of life. It’s all relative!

I’m very interested to hear what others think about this. Where do you stand? Do you have an opinion? Do you consider or refer to your diabetes as a disability?

(Almost) Wordless Wednesday – Wizarding

May 7, 2014 in Hypo, Lows | 2 comments

Sometimes we all need a little Harry Potter magic to help with diabetes. Just try to avoid the earwax flavoured ones….

bertie botts

Equality (or how long is too long to wait – the sequel)

May 6, 2014 in Advocacy, Healthcare team, Real life | 1 comment

Yesterday’s post about waiting to see my GP for 90 minutes past my scheduled appointment received some interesting comments and feedback both here on the blog and on Facebook and Twitter. Most people seemed to agree that the GP clinic displayed a lack of courtesy in not calling to let me know of the significant delay I was about to experience because my doctor was running so behind schedule. There is a great comment from a doctor providing the ‘other side’ of the story which makes for some interesting reading.

When I eventually was seen by my doctor, he apologised for the wait. He was incredibly sincere and said that it was ‘just one of those days’. I asked him what was the clinic’s policy when doctors were running considerably behind and he said that reception staff should call patients to let them know that there would be a wait, and inform the patient of the time they should show up to avoid sitting in the waiting room for too long.

He was upset – and very apologetic – that this had not happened in my case, and said that, quite simply, it was not good enough to expect people to wait for so long. He followed it up with the reception staff after my visit. And I spoke with the receptionist too as I was settling my bill. She said that they had been calling some doctors’ patients that morning, but not my GP’s. She also apologised.

So the wash up in all of this isn’t really that I had to sit around for 90 minutes. It’s that as a person who, unfortunately, has to spend far more time than I’d like to scheduling and attending doctors’ appointments, I do all I can to streamline the process as much as possible. I also understand the system – just like many other high-users do and try to manage it as best I can.

I was more than satisfied by how my GP dealt with the situation yesterday. There is a great comment on the blog from Rosie Walker who said if ….everyone’s time is considered equally valuable…. there will be acknowledgement, explanation and apology for people who are waiting and effort made to try to address the situation, invite suggestions or comment on how things could be improved. Really, that is all that I am asking for.

How long is too long to wait?

May 5, 2014 in Uncategorized | 9 comments

There is little that frustrates me more than wasting time. I’m not going to claim to be the busiest person in the world – everyone is busy these days and has much on their plates. But I am the scheduling Queen – it’s the only way I manage to hold down a job and a life. Most other people I know are in the same boat; I claim no superpowers here.

But when I have a day that is scheduled to fit in as much as possible, I am beyond frustrated to have walked into a medical appointment to be told nonchalantly that my doctor is running an hour behind. One hour. Sixty minutes. At my scheduled time, he is three patients behind.

So, personal responsibility – I should have called to see if there was a delay. But where is the responsibility of the doctor/admin team at the surgery? If a doctor is running three patients behind schedule, surely a text message or phone call to let me know wouldn’t be too difficult.

This is part of the attitude of medical professionals that I don’t understand. I get that I will need to wait – I factor that into the scheduling – but an hour is not okay. There is an arrogance that suggests their time is far more valuable than mine.

If I was running late to this appointment – even just a couple of minutes – I would have called the doctor’s rooms to let them know.

I don’t know of any other situation where there is an assumption that it will be okay for a person using a service of any kind to just have to wait.

I will let the doctor know that I think their system needs to be considered, and that whilst I understand that waiting in a waiting room (yep – they got the naming if this one right!) is to be expected, an hour long (actually, now looking to be an hour and fifteen minutes) showing some courtesy for the paying customer (yep – that’s what I am here) would be greatly appreciated.

I have now rejigged the rest of my day’s appointments so I don’t keep anyone waiting for me. Because that would be rude.

Okay – am I just being grumpy or do I had a valid point here? Has anyone found a solution to this? Others’ experiences greatly appreciated!

I owe it to coffee

May 2, 2014 in Diabetes, Hypo, Lows, Real life | 2 comments

Sophia Loren is said to have once quipped ‘Everything you see, I owe to spaghetti’. Well today, the morning after a hypo that woke me at 3.15am and didn’t let me fall back asleep until after 6am, everything you see, I owe to coffee. I’m on number four.

Have a great weekend! A reminder to check out the Diabetes Stigma Project and consider making a donation.

And for your Friday listening pleasure, here’s some Keith Jarrett with ‘Long As You Know You’re Living Yours’.

Ouch

May 1, 2014 in Awareness, Diabetes, Real life | 2 comments

I stick needles into my skin, I shove insulin pump infusion sets into my sides, I rocket-launch CGM sensors into my stomach, I jab my fingers, I unflinchingly hold out my arm for blood to be taken and I roll up my sleeves for my annual fluvax without batting an eyelid.

Needles don’t scare me one little bit. I don’t even feel my heart rate speed up when a needle is coming at me, and although I’ve never checked, I’m sure that if wearing a blood pressure monitor while waiting for a needle to break the skin, there wouldn’t be a blip on the graph.

But other pain? Other pain I don’t deal with quite so well.

This morning, I stubbed my toe on the end of the bed. I collapsed onto the mattress, yelling ‘shit, shit, shit’ ‘ouch, ouch, ouch!’ and then grabbed my foot, expecting to see blood, swelling and possibly a bone sticking out of the skin. The pain was excruciating and clearly, I was about to die. Nope. Nothing. Now, four hours later, there is no sign of this injury that caused tears and swear words that made my daughter give me a warning about using the ‘S-H word, mum’!

I don’t ever recall having been scared of needles, so I don’t think that it’s diabetes that has desensitised me to the ‘pain of the prick’ (not a euphemism). But other pain is another thing altogether. Mouth ulcers reduce me to tears; a sore throat can have me whimpering in pain and headaches make me cover my eyes and swear that I have a tumour because of the agony I’m experiencing. I jammed my finger in the car door not long ago and was convinced that I was going to need reconstructive surgery. (Didn’t even bruise.) Whenever I’m asked what I’d rate the pain from something I always say ‘Ten. At LEAST ten. Does the scale go to eleven? ‘Cause then I’m at eleven’.

So with this in mind, you would think that I demonstrate great sympathy for others when hurt or in pain. But I don’t. I have no compassion for people who complain about discomfort, unless I can see a lot of blood, a cast, crutches, or my mum just after she’d had a double knee replacement (although the feelings of sympathy only lasted a couple of days.) Anyone else; no sympathy whatsoever. Once, after tripping and scraping her knee, my daughter looked at me through her tears and said ‘Just once I’d like you to be sympathetic when I fall over, mum’ in response to my ‘Oops; you’re okay. Up you get!’ (Mother of the year award in the post.)

I wonder if living daily with things that cause pain – even if I don’t flinch – has rendered me completely unsympathetic without an ounce of compassion when others complain. And do I feel that I can overreact when something hurts because I don’t complain about the diabetes stuff?

Whatever it is, I don’t know. But I can’t see myself becoming more tolerant of pain and I certainly don’t think I will ever be caring and kind to others in pain. Instead, I’ll keep moaning and complaining about how much a paper cut hurts me all the while telling others to take a spoonful of cement and toughen the f#@k up. I never promised to be consistent.

It’s time

April 30, 2014 in Advocacy, Awareness, Conferences, Diabetes | Leave a comment

At last year’s World Diabetes Congress (WDC), it was terrific to see a significant number of ‘consumers’ attending. For the first time in Australia, people with diabetes were directly encouraged to attend a scientific conference.

However, there was much disappointment that people living with diabetes who had registered to attend were unable to access the Exhibition Hall.

Expo Halls at conferences are an endless source of interest and excitement. I am usually registered as a speaker so I have full access to conference Expo Halls and it is during my wanderings that I find out about the latest and greatest in technology and treatment therapies. I get to speak with reps from the companies and ask questions that are usually not addressed in the glossy brochures, and, most importantly, I get to pick up and handle new devices to see how they feel in my hands, fit in my handbag (always returned!) or sit in my bra (it’s where I wear my pump; not trying to steal anything!).

The frustration at WDC was that as well as hosting the displays for pharma companies, the Expo Hall also accommodated device companies. Consumers couldn’t get in there to see the latest meters or pumps.

And here is the problem. In Australia, we have the Therapeutic Goods Act 1989 (the Act) which states that advertising of prescription-only medications to consumers is prohibited. However, it is okay for devices to be promoted directly to patients.

The Act is out-dated and it’s time that we revisit the current ban on promotion of drugs to people with health conditions. Why, as a person living with diabetes, can I not speak with the pharma company releasing a new insulin? Why can I not ask their reps about side effects and drug profiles and why the new medication is better or how it is different to what is already on the market?

The truth of the matter is I can find this information anywhere I want. A quick visit to Professor Google will provide me with the answers to any questions; patient blogs will explain the consumer perspective and an image search will even show me the packaging of the medication. When the Act was written, it was 1989 and the internet was not in the palm of everybody’s hand.

But today? Today such restrictions are ridiculous and only promote the idea that the people actually living with whatever health condition the medication has been designed to treat are too stupid/too ignorant/can’t be trusted with this hallowed information.

The ridiculous thing is that even if I can see and read about and ask questions to do with drugs and new therapies, I can’t simply go and buy them. I can’t rock up to Mae, my gorgeous pharmacist, and ask her for the large pack of whatever new drug I’ve just read about.

There is still the ‘middle (wo)man’, the doctor. But what is so terrible about me going to see my doctor and asking about a certain therapy? How is saying ‘I’ve read about this newly listed medication and I was wondering if it is something that would work for me?’ going to do anything other than empower me and encourage a balanced and consultative relationship with my HCP?

The current system reinforces all the things that patient advocates are trying to break down: out-dated ideas that the keepers of knowledge must only be healthcare professionals and that patients will be told what to do. And then do it. It forgets who is actually driving the bus that is my healthcare. Me!

Additionally, the Act as it stands now only serves to hold back real consumer involvement and engagement at scientific conferences. I don’t subscribe to the archaic ‘conferences aren’t a place for patients’ attitude held by many out-dated HCPs. We should be looking to events such as Doctors 2.0 and You for how to bring together patients and HCPs. We should be looking to the ADA conference which has a significant number of consumers in attendance – all of whom are freely permitted to wander the Expo Hall. We should be moving away from the ‘us and them’ approach so entrenched in Australia.

Diabetes Stigma Project

April 29, 2014 in Awareness, Diabetes, Real life, Social media, Stigma, Wellbeing | Leave a comment

There is a lot of stigma associated with many health conditions. We know that there is significant stigma when it comes to mental health. Groups such as Headspace provide fantastic information about how and where to seek help as well as support initiatives such as the Fifth Army movement which promotes mental health awareness.

But I think that diabetes experiences the worst stigma of all because it seems okay to blame people with diabetes for their condition. This seems to be the case more for type 2 diabetes, but people with type 1 also report being stigmatised and discriminated against because of their diabetes diagnosis.

Any time diabetes is mentioned on the news, it is accompanied with photos of overweight people digging into a burger or slouching in front of the television. Accusations of laziness, overeating and a sedentary way of life follow and before you know it, people are pointing and saying ‘you brought it on yourself’.

Whilst we can excuse this as ignorance or just plain stupidity, it doesn’t change the fact that living with diabetes is tough enough on its own without having to worry about being shamed for having it.

So it was with much excitement that I read about the new Diabetes Stigma Project, an initiative of Dr Jessica Browne and Adriana Ventura from the Australian Centre for Behavioural Research in Diabetes. I know both of these women and am not at all surprised at how well considered this project is.

Funds collected will be used to develop a short questionnaire that will measure people’s experiences of diabetes stigma. The questionnaire will form part of a larger survey that will also examine depression, anxiety, diabetes-related distress, self-management, employment and social support.

This is, indeed, an ambitious project. But providing a clear snapshot of the situation will help address not only the impact of stigma as it relates to those of us living with diabetes, but also find ways to reduce stigmatising behaviours from occurring in the first place.

How can you help?

If you can, consider making a donation to the project. Any amount would be appreciated. The project’s target is $5000, but of course, more money will allow the survey to reach more people and provide a broader understanding of the social stigma associated with living diabetes.

And this is where social media comes into its own!

‘Like’ the Diabetes Stigma Project Facebook page and share the link with all your networks. Share on Facebook and Twitter and even consider writing a far better blog than this one! Tell your friends and family about it and explain why this is such an important issue.

To keep up, follow #diabetesstigma on Twitter and keep an eye on their Instagram – @diabetesstigma. And here is their YouTube clip which you can share with everyone you have ever met!

The Australian Centre for Behavioural Research in Diabetes (ACBRD) is a partnership between Diabetes Australia – Vic (DA–Vic) and Deakin University. I am employed by DA–Vic and do not work for the ACBRD, however have been involved in some of their projects. No funds raised in this campaign will directly or indirectly contribute or fund the work I am employed to do.

Cafe culture

April 28, 2014 in Diabetes, Diagnosis, Food, Real life | 1 comment

A montage by photographer and Marios waiter Massimo di Sora.

Today, my all-time favourite café turns 28 years old. Marios café (named for its two owners, Mario Maccarone and Mario De Pasquale, hence no apostrophe) is celebrating its birthday and remains the ultimate in Melbourne café culture. It’s unapologetic (still doesn’t serve skim milk, although did succumb a couple of years ago and started to offer soy) and reliable (never had a bad coffee!).

I’ve been going to Marios for pretty much all of its 28 years – first with my parents and then with friends. Once I left school, meeting up with people at Marios was the epitome of cool! Great jazz on the stereo, a gorgeous changing art display showcasing local talent, and the best coffee in Melbourne. Plus tablecloths on the tables, smartly dressed waiters and breakfast served all day. There have been many times that I’ve ordered scrambled eggs or a blueberry bagel at 10pm!

Back in my uni days, it was the location for many first dates and I could always tell if there would be a second date by whether or not the guy knew of Marios when I suggested we meet there. In any relationship break up in the division of cafes and pubs and places we’d hung out, I always got Marios!

Marios is where I take overseas friends when I want them to have a truly Melbourne café experience. DOC friends from home and abroad have been taken there and just a couple months ago, a group of us got together to catch up. It’s where I meet up with friends who have moved overseas when they come home for a visit. My beautiful friend Shannon who moved from Melbourne to Hong Kong and then the UK over 15 years ago and I have a standing date any time she’s in town so she can get a fix of Marios lasagne! Recently, I caught up with a long-lost friend and there was no doubt about where we would meet.

There have been many memorable visits to Marios including the night before my daughter was born, where I checked my watch every ten minutes, counting down until the time I would meet her, and the day she came home from hospital, where a pit stop was made to show her off to the waiters.

I’ve laughed, cried, and had some of the most serious conversations of my life in Marios. I’ve said goodbye to friends and welcomed them back into my life. I’ve met up with people for difficult, heartbreaking chats because it’s always felt safe.

I can still remember my first trip to Marios after I was diagnosed with diabetes. It was only a week or two later and it was the first time I was eating out. It was where I did my first ‘public injection’ and I can remember my heart racing as I pulled my insulin pen out of my bag and tried to jab my stomach secretly. I was sure everyone was watching me, judging me, waiting to jump on me and tell me to put it away. No one noticed and if they did, said nothing. I searched the menu for food that the ridiculously old-school dietitian I had seen would approve of and I wondered if it would be okay for me have chocolate sprinkled on top of my cappuccino. I fought back tears as I asked the waiter for sugar substitute and then explained why I was asking. My coffee was on the house that day.

Now, I don’t hide away my BGL checks or pulling my pump out from under my clothes when I am out, and it was at Marios that I realised that I had nothing to be ashamed about when it came to ‘public displays of diabetes’. Marios normalised eating out with diabetes – the new reality of my life.

I felt safe there. I knew I would not be questioned. I knew that I would still be the old me there and Marios would never change. It felt like it always did. It felt like home.

Marios Cafe
303 Brunswick Street Fitzroy VIC
(03) 9417 3343
http://www.marioscafe.com.au