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Do you ever play that game where you change one word in a song or movie title for another? One that I find fun is changing the word ‘love’ for ‘lunch’ in old jazz standards: Love Lunch for Sale; What is This Things Called Love Lunch; I’ve Got My Love Lunch to Keep Me Warm. You get the idea. (Or for another idea, check out this Harry Potter-inspired fun!)
Today, when this ‘inspirational quote; came up in in my Facebook feed, I replaced the word ‘life’ with ‘diabetes.
I think perhaps it translates quite well. I am certain that diabetes hasn’t gotten easier for me. I’m sixteen years in – still a baby, when I think of the Kellion medallists I met recently – but even though I know a hell of a lot more about diabetes today than when I was first diagnosed, it’s not easier and it’s certainly not more forgiving. In fact, each year as I tick off another diaversary, I worry more and more about complications. Hypos have become less predictable. I still second guess myself; something that I hoped I would not do as I gained the wisdom I expected would come with diabetes longevity. I’m still waiting….
As for getting stronger and more resilient, I know that definitely is true. I’ve found that I can build up my resilience stores – it helps when things are going well and I feel that I’m top of everything.
And the strength I have found to deal with some terrible situations has surprised me. At moments where I have thought that I was beaten and broken, from somewhere I have found the strength survive. And often even thrive.
I am definitely a stronger person overall because of my diabetes. Whilst diabetes has been fairly gentle to me overall, it has certainly blindsided me at times. But despite that, I’ve coped.
I think living with diabetes means we just have to be resilient – it isn’t a choice. Giving up isn’t an option when it comes to this relentless condition.
It’s Friday! Here’s the wonderful John Pizzarelli singing ‘I like Jersey Best’.
Do a Google search of the term ‘empowered patient’ and you will be inundated with thousands and thousands of links defining the empowered patient, instructing how to be an empowered patient or advising how to deal with an empowered patient (run for the hills and refer them on to another HCP). Health conferences have sessions dedicated to patient empowerment, there are countless social media sites and blogs on the topic, and there are many journal articles – written from the perspective of both the patient and HCPs about what patient empowerment means in healthcare. It could be considered a buzz term, even though it’s been around for some time.
Health organisations for conditions from diabetes to Sjögren’s syndrome(look it up!) dedicate pages of their websites, events and resources to guiding people to become empowered and ‘own’ their condition. It’s not a new thing, and while embraced my many, is still treated with some scepticism and nervousness by some and dismissed by others.
I am what I (and most) would call an ‘empowered patient’. Whilst, I acknowledge that the term is widely understood, I’m not sure that it really is a term with which I’m comfortable. Perhaps because the empowered patient can be considered difficult and annoying – a know-it-all who is there to try to take over the expertise of their HCP. That’s absolutely not what I am trying to do with my healthcare. When it comes to diabetes, I am the first to say I know nothing about diabetes – that’s why I see an incredible endo. But MY diabetes? I am the Universe’s leading expert in that!
For me, being an empowered patient simply means that I am in the driving seat as well as being navigator of my health issues– primarily diabetes, but also other things as well. (Last year, I demanded that I have a D&C following a miscarriage despite the OB wanting to just ‘wait and see’. Waiting and seeing for me would involve horrible pain; excessive bleeding and dealing with the miscarriage whilst on a long haul flight back home from NYC. Previous experience told me that. So I made sure that my wishes were not only known, but also carried out.)
In sixteen years managing diabetes there have been very few instances where I have blindly followed medical advice without asking questions, weighing up all possibilities and talking with others about their experiences.
But I wonder how much being empowered about my health condition and active in decision making is simply because that’s the sort of person I am. When planning for anything, I am organised and informed. I seek out the right people to speak with, I consider options, I ask a lot of questions. I make decisions based on what I have learnt and what I think will be best for me. Whether it is planning a holiday, choosing a contractor or looking after my health, I empower, educate myself. It’s my personality; it’s how I roll.
So does it mean that people who are not naturally like this miss out on the choices and options afforded to people who seek them? Does it mean that if someone is unable to empower themselves (perhaps because of language or cultural barriers, their personality or a lack of understanding of, or an inability to navigate the system) they wind up with substandard care?
Being an empowered patient isn’t at the expense of the expertise and knowledge of the HCP experts we’re working with. It helps form a partnership. I honestly do believe that it is because of our empowerment – our demands and expectations – that we receive better care, better options and, possible, achieve better outcomes. We make our HCPs accountable and answerable, but more than that, we make ourselves accountable and answerable. Sharing in the decision making means we also have to take responsibility when a medical treatment doesn’t necessarily work out the way we hoped. But I’m willing to take on that responsibility.
This week in the UK, it’s Diabetes Week. I’m always interested to see the focus of campaigns for awareness weeks and this has to be one of my favourites!
Having lived first hand through diabetes weeks that have involved ticking time bombs and threats of every single diabetes complication under the sun, I wish I could give a proverbial hug to the team at Diabetes UK who have put together an empowering, positive campaign. In lieu of that, I sent a tweet.
Using the slogan ‘I Can’ the campaign acknowledges the difficulties people with diabetes may experience, but wants to focus on the things that we CAN do. I love this!
I’ll be keeping an eye on this week’s campaign. I’m interested to see and hear the stories of people living with diabetes and how they have managed to face challenges.
I hope that this year’s initiative is a positive one for Diabetes UK and we see more of these kinds of campaigns in the future.
Check out the Diabetes UK Diabetes Week campaign here.
And follow the #iCan tag on Twitter.
‘You do eat, don’t you mum?’ My nine year old had wrapped her arms around my waist this morning as I was fastening a clip in her hair. She squeezed tight.
I kissed her head and stepped back. She looked so concerned.
A couple of years ago, a friend of the kidlet’s had developed some disordered eating behaviours. Using age-appropriate explanations, we discussed what this meant for her friend, what we had to do when we were spending time with this friend and what was being done to help her friend ‘feel better.’ More broadly, I briefly explained that some people do have ongoing issues with how they think their body looks and tried to describe how this wasn’t necessarily about the food that they were eating, but had to do with their feelings and how they felt they looked. Trying to give the ‘eating disorders 101’ talk to a then-six-year-old possibly made my head explode with sadness.
This was a difficult conversation to have because I’ve always been concerned about how we discuss food and weight and body image. When I think about it, this was probably the first time that we’d ever had a discussion about food as being anything other than ‘Gee – that’s yum!’
The relationship between food and diabetes is mentioned occasionally – but again, usually because I’m low and need something to help get my BGL up.
As I’ve mentioned before, I’ve lost a bit of weight in recent times. This was not part of a weight-loss strategy. I wasn’t eating differently, or cooking different foods. I am a hobby baker and throughout this time, our bench top housed Tupperware containers full of cakes and cookies and slices. And I talk a lot about Nutella. Food is something that is celebrated in our house. Nothing is forbidden. We just eat a lot of fresh, healthy stuff with a decent splattering of (mostly home-cooked) treats.
We eat out regularly, but never at fast food restaurants. Our local café (a two minute walk away) is an extension of our kitchen; their coffee machine is our coffee machine!
But it seems that even though I’ve not discussed my weight loss with our daughter, she has noticed. Perhaps she hasn’t noticed that I look different, but, when she hugs me, I certainly feel different; when she wraps her arms around my waist, she knows that they go a lot further than they used to.
Should I be concerned at her concern? Does she equate weight loss with there being a problem? Is she worried that I have developed some of the eating problems her little friend had?
I dealt with this morning’s question by reminding her that we eat together at least one meal each day – more on weekends and holidays. I reminded her of the other night when we were toasting marshmallows by the fire as we watched a movie together. I pointed to a recent trip to the country where we ate pizza and shared doughnuts. We talked about the pasta dish I’d made the night before and how we sat at the dinner table eating it.
‘Okay,’ she said. ‘You just feel skinny when I hug you, that’s all.’ And then she changed the subject. I cringed at the word ‘skinny’ just as I would have if she’d used the word ‘fat’.
But perhaps I was making too much of it. Perhaps she was just stating a fact. Maybe using the word skinny was just an adjective that seemed appropriate, just as fat would have been in a different case. Maybe there was no judgement call attached. Maybe. Or maybe not.
I’ve written before (here and here) about how the day we award Kellion Victory Medals to people who have lived with type 1 diabetes for 50, 60, 70 and even 75 years is my favourite work day of the entire calendar year.
Today was the first 2014 ceremony, and fifteen people were awarded medals, including three who received their seventy year medal.
The amazingness and brilliance and inspiration of these incredible people was captured in this one perfect tweet from Professor Jane Speight. I’ve nothing more to add:
I was recently sent an article from Medscape that was written by Svetlana Katsnelson MD, endocrinology fellow at Stony Brook University Medical Center in New York.
The gist of the piece is that for a week as part of her endocrine fellowship training, Dr Katsnelson wore an insulin pump and checked her BGLs, and now believes she knows about living with diabetes. She also considers herself non-compliant because she didn’t bolus for an apple.
This may be oversimplifying the article a little and I honestly do believe that the intention here is good. But a little perspective is needed, I think. It was this comment that really upset me:
‘The experience provided me with a better understanding of how to use the devices that many of our patients use every day, but it gave me much more than that. I truly began to understand how difficult it is to live with diabetes.’
No, Dr Katsnelson, no. You do not truly understand how difficult it is to live with diabetes.
What you have is an idea of what it is like to walk around with a device delivering non-life saving saline into your system. You also have an idea of how it sometimes hurts when a sharp object pierces the skin on your finger. You probably could have deduced that anyway because, you know, sharp object, skin, nerve endings etc. You know how the buttons of these devices feel under your fingers and the weight of the devices in your hands.
You may have an idea of how tricky it can be to accommodate a pager-like device if you are wearing a pretty, flowing dress to work (if that is your want). You may now understand how annoying it is to have to stop what you are doing because it’s time to do a BGL check.
But what you don’t understand is that diabetes is about so very much more than that.
Here is what you don’t have any idea about.
You don’t understand the feeling of ‘this is forever’ or ‘I never get a holiday from this crap’. I know that this was acknowledged in the article, but really, you don’t know how it feels to never be able to escape diabetes.
You have no concept of the boredom of living with a chronic health condition, or the monotony of doing the same tasks each and every day over and over and over again!
You don’t understand the fear that overtakes your whole being as you imagine all the terrible complications that have been threatened and promised as result of diabetes.
You have no notion of the frustration of living with a condition that doesn’t have a rule book – and in fact changes the rules all the time!
You haven’t any perception of the fear I sometimes feel that I’ve passed my faulty genetic matter onto my beautiful daughter; or that I am a burden to my family and friends.
You will never feel the judgement from healthcare professionals because numbers are too high or too low – or that there are not enough of them.
You will never be called non-compliant by a doctor or made to feel guilty because you are eating a cupcake – all because your beta cells decided to go AWOL.
While I really do commend the notion of HCPs trying the ‘day in the life’ (or ‘week in the life’) idea, I think that being realistic about what this experience provides is important. It does not give any insight into the emotional aspects of living with a chronic health condition. It doesn’t explain the dark place we sometimes go when we are feeling particularly vulnerable or ‘over it’.
I have to say that all in all, this article left a sour taste in my mouth and I don’t like to feel that way because it sounds like I am being Grouchy McGrouch. I’m not. And as I said, I think that the intention here is good.
I just don’t want Dr Katsnelson to think that she now knows what is going on in my head when I wake up at 4am and every terrible scenario plays out leaves me feeling a pressure on my chest and a blackness in my mind that threatens to overtake me.
But I also want Dr Katsnelson to know that I really don’t expect healthcare professionals to know and understand all of these things. I expect them to treat me with respect and dignity. If this exercise has helped that, then great, but please, call it for what it is.
The article discussed in this post (Svetlana Katsnelson. Becoming the Patient: Not as Easy as It Looks. Medscape. May 12, 2014.) can be accessed here by first creating a free login.
Eat Right and Exercise To Keep Diabetes Under Control promised the email that landed in my inbox at about 3.30 yesterday afternoon. At exactly the same moment I really wanted a loaf of white bread with Nutella and butter. Yes. Real butter.
I receive these sorts of emails quite frequently, including this one:
That one arrived a week ago, so I’m expecting to be cured in about 14 days. I’ll let you know how it turns out, but if everything goes to plan, this blog will be defunct in a couple of weeks. Woot! I plan to then blog about something interesting. Like butter and Nutella on white bread.
There is false hope spread through many channels; each and every day. These days, I snort, ignore, share on SoMe and maybe swear (okay, always swear) at the stupidity of these snake oil cures that promise to fix my faulty immune system in one simple step (or three short weeks).
Once someone told me that I needed to read The Secret because that would not only cure my diabetes, but also ensure I found a parking spot every time I needed to. Versatile!
Why can’t these emails tell me to Drink coffee and apple martinis, and have an afternoon nap every day to cure diabetes (or even just keep it under control)? Or Sit by the beach looking at the waves breaking to keep BGLs under 8. But above 4. All the time.
I have had diabetes long enough and have received enough promised cures to know that these are all baloney and I call bullshit on all of them. But they still annoy me because for some people – people newly diagnosed; people fed up with living with diabetes; parents of kids with diabetes – these false promises provide false hope. When you’re looking at anything to stop the pain, the distress, the tedium, the anxiety of living with a chronic health condition, sometimes you want to believe in a miracle cure.
I’ve unsubscribed from the list that sent me the email yesterday. But I know that tomorrow, or the day after, or next week there will be another promise in my inbox or Twitter stream that promises to fix my beta cells. That I can guarantee.
I’m tired.
Today, I woke in a great mood after a good night’s sleep. The weekend had been relaxing and lovely – family, friends, food and gorgeous weather on top of it all. Plus, I bought a new necklace with a pineapple on it. It was a good couple of days!
I was standing at my favourite café near work, waiting for a takeaway coffee and thinking that the barista was a magician as I watched his choreographed movements, filling takeaway cups with perfectly brewed caffeine.
‘This good day is about to get better,’ I naively thought, the taste of that first sip of coffee so close.
And then, I checked my email and ‘bam’. There it was.
A discussion about not distinguishing between type 1 and type 2 diabetes in a setting where it really is not relevant. I sighed.
And realised how tired I am.
Nearly thirteen years ago, I was employed to run a very small and, at the time, somewhat tokenistic type 1 diabetes program for a diabetes organisation. Thanks to a very supportive CEO and me being a pushy little thing, the program grew and grew and now, incorporates a dedicated team doing some incredibly good work for people living with type 1 diabetes.
One of the reasons for the program’s success is that we have been very clear about defining it as a program for people with type 1 diabetes, making sure the information we provide is targeted and relevant to the people we are trying to reach. We acknowledge each and every day that people with type 1 diabetes have specific information requirements and then we go about providing that information in the way people want.
In exactly the same way, a couple of years ago, we realised that the information for people with type 2 diabetes was completely forgetting the changing face of the type 2 diabetes community. There are more and more younger people being diagnosed with type 2 diabetes and the information we had was very much for an older audience. Hence, Generation T2 – a new program for 18 to 39 year olds with type 2 diabetes.
There are times that it is important to distinguish between the diabetes and there is no louder advocate for that than me.
But there are times that it is irrelevant. Yet, people still get angry – even when it really doesn’t matter if the type of diabetes is defined.
I am tired.
I am over this argument and this discussion.
Last week, the government handed down a budget that is going to hit the hip pockets of people with diabetes like never before. All people with diabetes will be affected – regardless of type.
During the World Diabetes Congress we heard of places around the world where the cost of insulin is so prohibitive that there are people dying because they cannot afford to buy the drug they need to stay alive. Slow, painful, horrible deaths because they cannot afford to buy insulin. Just think about that for a moment.
Here in Australia, there are people who cannot afford to use an insulin pump despite desperately wanting to because they cannot afford private health insurance or qualify for the Insulin Pump Program to assist with cost of purchasing the $9,000 (plus) device.
These are the issues that we should be fighting for and getting angry about. These are the issues that are important. Access to healthcare – a basic human right for all people – ALL people with diabetes – is what the topic should be; not whether or not the Channel 10 news forgot to say type 1 (or 2) before the word diabetes.
I am a card carrying member of the diabetes community. I am proud of this community and I am pleased to have a voice within it.
But we need to stop the finger pointing and the name calling and the blaming. How can we expect people outside of our community to get it right if we can’t? Why is it more important for people to understand the how and why we got this condition as compared with the how and why we’re trying to live and manage with it?
I am proud of the Australian diabetes community, but it is here that I hear this attitude more than anywhere else in the world. This discrimination is not helping us – it is harming us. Does it matter if people don’t really understand the different types of diabetes? I get it. It’s annoying, it’s frustrating; it’s constant. But really; does it matter?
This is a first world – a first class – problem.
And I am tired. I am saying it’s time to stop. Enough!
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.
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!
Diabetogenic 