Diabetogenic

Diabetes Blog Week – The hope of tomorrow

May 15, 2014 in #DBlogWeek | 3 comments

It’s the fifth annual Diabetes Blog Week, with thanks to the lovely Karen Graffeo from Bitter~Sweet Diabetes. Today we’re writing about mantras that help us get through the tough diabetes days. Come back tomorrow for the next instalment, and in the meantime, check out #DBlogWeek and follow along!

Those days that diabetes and I are on the same page, playing by the same rules, singing from the same hymn book are dreamy. They are the days that my CGM graph is a pretty, straight line with numbers that don’t move much and everything diabetes-related behaves. I love those days. I live for those days!

Unfortunately, there are the other days (and let’s admit it – there are many of them) when diabetes and I are not only on different pages, but we’re reading completely different books. We’re playing by rules from different games altogether and singing different tunes in different keys from different performers. I hate those days.

Those are the days that giving in, giving up and admitting defeat seems like a good idea.

But that is not an option. Because there is tomorrow. And the day after. And the day after that. And in each of those days, diabetes will be there.

As clichéd as it sounds; as Pollyanna-ish it makes me feel, I tell myself there is always tomorrow.

Each day I get to wipe the slate clean and start again. And that next day? That day may be one of the days when everything plays nice. That’s what I believe in. That’s what I hope for.

The very hope of tomorrow.

Diabetes Blog Week – The Dark Place

May 14, 2014 in #DBlogWeek, Awareness, Real life, Wellbeing | 3 comments

It’s the fifth annual Diabetes Blog Week, with thanks to the lovely Karen Graffeo from Bitter~Sweet Diabetes. Today’s we’re writing about the emotional side of diabetes. Come back tomorrow for the next instalment, and in the meantime, check out #DBlogWeek and follow along!

There is a dark place in my mind that is locked most of the time. Usually, I manage to keep it closed away and it remains hidden.

And when I am feeling strong and robust and life is moving along at its usual pace without too many problems, I am not tempted to go to the dark place, to open the door and examine what’s hidden.

But when I am feeling vulnerable – for whatever reason – and my defences are down, I peek. Stupidly, I go in, treading carefully, cautiously looking around. To the dark place.

The dark place is the fear that lives inside of me about diabetes. It’s the fear of today, of tomorrow. And of the unknown. It scares me and it scars me. It makes me feel fragile; breakable. And highlights how broken I am.

In the dark, I feel the relentless-ness and the never-ending-ness and the overwhelming-ness of diabetes that I usually simply expect – and accept. Suddenly, the day-to-day and more-than-manageable tasks that I need to do seem impossible, daunting, too big to contemplate.

The dark place is quiet, the only sound is my amplified heartbeat.

I’ve learnt to breathe slowly, see the dark place for what it is, allow myself time to visit, accept what is there and then close the door. I come back and face the light and life and the people I love. I go to work, I see my friends, I bake, I drink coffee, I listen to music. I look like I am living my life – and I am. But when I’ve visited the dark place, I am scared and look over my shoulder. I feel oppressed and fatigued. It takes me a while to fully come back – sometimes only a day or two, sometimes longer.

This is my emotional side of diabetes. This is the dark place. This is the exhaustion of diabetes.

Diabetes Blog Week – Poetry

May 13, 2014 in #DBlogWeek | 12 comments

It’s the fifth annual Diabetes Blog Week, with thanks to the lovely Karen Graffeo from Bitter~Sweet Diabetes. Today’s prompt is to write a poem. Come back tomorrow for the next instalment, and in the meantime, check out #DBlogWeek and follow along!

I found today’s prompt a little difficult. Poetry is not my strong suit. I thought of perhaps writing a comical limerick, but The Grumpy Pumper beat me to it – even his post title is poetic! (Also, I was having trouble getting past a first line of ‘There was a girl from Nantucket….’)

Anyway, I thought perhaps I’d try a Haiku because I’ve always found the format so beautiful and magical. The economy of being able to convey something evocative and gorgeous in seventeen syllables is a remarkable skill, one that, unfortunately, I don’t possess.

Diabetes lives

My body, my bones, my mind.

Always. Forever.

Diabetes Blog Week: Changing the world

May 12, 2014 in #DBlogWeek, Advocacy, Awareness, Diabetes, Wellbeing | 13 comments

It’s the fifth annual Diabetes Blog Week, with thanks to the lovely Karen Graffeo from Bitter~Sweet Diabetes. The first topic for the week asks us about the diabetes causes and issues that really get us fired up. Here’s what I have to say! Come back tomorrow for the next instalment, and in the meantime, check out #DBlogWeek and follow along!

I am not in any way foolish enough to believe that what I write on this here little blog or the work I do as a diabetes consumer (patient) advocate has the ability to change the world.

But I am confident enough to believe that my messaging is strong and that I generally stay on topic.

There are many things that I feel passionate about when it comes to being a diabetes advocate, but nothing more so than who is in charge of driving the diabetes bus. And that is the person with diabetes.

There is so much written about patient-centred care. Google it and you’ll come up with a…well a google of links. But despite much of it talking the talk, I’m not sure that it really walks the walk. The idea of patient-centred care is often at odds with policies and procedures of healthcare settings making it difficult for the person with diabetes (or other medical condition) to really be in the driver’s seat.

For the person with diabetes to be truly in control (and I’m not talking control in the sense of their BGLs, I mean in the sense of decision making) everyone needs to really subscribe to the model where the patient is smack bang in the middle of the picture, directing traffic, and making the ultimate decisions.

This doesn’t mean that it is done in isolation. No. It’s the exact opposite really.

It means that with support from HCPs, from diabetes organisations, from peer groups and from the health system, the person with diabetes is armed with all the information needed, given the right guidance, shown all the choices. And then, with all of this, they make a decision as to what they believe is the best thing for them. Nothing is withheld, everything is discussed, all options are in the table and considered.

I have too often had the options taken away from me. While I am pretty good at standing up for myself, it is exhausting at times to have to fight for my care to be the way I want it to be. And it’s frequently when we are at our most vulnerable that we have to fight the hardest. Hospital admissions (planned or emergency), times of extreme diabetes burnout or when we’re struggling to stay on track are the times that we often need to stand up for ourselves…even if we don’t have the energy, the inclination or the desire to.

When push comes to shove if I am charged with dealing with this condition 8,736 hours a year, then I AM driving this bus. The role of the support team around me is to give me suggestions and options about how to navigate, but then let me decide if I’ll turn left or right. And come along for the ride – even if they don’t necessarily agree with the road I’ve chosen.

Today, I’ve also written a post at the Diabetes Australia – Vic blog about another cause close to my heart – The Diabetes Stigma Project. Have a read!

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.