You are currently browsing the category archive for the ‘Real life’ category.
I haven’t quit sugar and I’ve no intention of doing so because Nutella, doughnuts and the red velvet Tim Tams* that Adriano Zumbo has just developed with Arnott’s. Also, candied bacon.
So looking at the I Quit Sugar Facebook page the other day was a pointless exercise that was only ever going to end in stress eating (of foods mentioned above). And the development of a twitch in my right eye.
The I Quit Sugar (IQS) Facebook admins had caught on that last week was National Diabetes Week and were outraged – OUTRAGED – to discover that on some diabetes sites were recipes containing sugar. Because, you know, sugar causes diabetes. Right?
Wrong!
But let’s not allow facts, a broad evidence-base, and the medical fraternity to get in the way of a good bit of ignorance, will we?
I know; I should have walked away. Shoulda, coulda, woulda. Instead, I read. And read and read and read post after post after post of ignorance and judgement and lies.
Whilst for the most part I sat there shaking my head at the witlessness of the posts, it was when people started outright lying that I decided that I had to write something. One woman claimed that the Australian Paediatric Endocrine Group (APEG) is run by ‘pharmacy companies that make insulin’. She went on to say that JDRF is ‘owned and run by pharmacy companies with an interest in insulin’.
Both these statements are complete lies. The APEG Council is made up of very highly regarded healthcare professionals. The current President of APEG is Professor Fergus Cameron who is the head of Diabetes Services at the Royal Children’s Hospital in Melbourne.
JDRF is a global not-for-profit, raising much-needed funds which go towards research that is looking to find a cure for, and improve management of type 1 diabetes. Run by pharmacy companies? I don’t think so.
The conspiracy theorists on the IQS bandwagon remind me of the anti-vax brigade. The ridiculous claims that the entire medical establishment is simply trying to keep people unwell and feed the pockets of Big Pharma is offensive. The only difference between the two is that the anti-vaxxers are stupid and dangerous. The IQS zealots are just plain stupid.
But here’s the other thing that I find so offensive about so many of the posts from proponents of IQS – the judgement. One woman (in a comment that has now been removed) said she’d like to ‘slap diabetics who eat sugar’.
Quitting sugar is a personal choice – a lifestyle choice, if you will. In exactly the same way that doing yoga, going for a run, not eating red meat or only wearing stripes is a personal choice. These things may work for you, which is terrific, but judging someone because they still want to eat sugar – or wear polka dots – is crazy.
The foolish conspiracies on the IQS website say the advice provided by the medical establishment and health organisations should be questioned and ignored.
But, as I posted in my comment on their FB page, whose integrity should we really be questioning here? Researchers and healthcare professionals with years of training in their specialised field? Organisations supporting people, and raising money to help researchers further developments in living well with these conditions? Or money-making endeavours based on pseudo-science with no evidence-base run by a celebrity?
DISCLAIMERS
*I am so not sponsored by Arnott’s, but seriously – these are amazing! And perfect for an intended week of eating only red food to coincide with a new-found addiction to True Blood!
Professor Fergus Cameron is a member of the Medical Advisory Committee of the Diabetes Camps Victoria Program at Diabetes Australia – Vic. I am employed by DA-Vic and the chair of this committee.
On the sixth day of #NDW14, I’m looking beyond our shores and remembering that we really are lucky here when it comes to accessing diabetes supplies.
Last night, I attended a special screening of Sweet 16, a movie about a young Canadian woman with type 1 diabetes. The documentary film tells the story of Katia Shannon, who shares her story of life with diabetes.
Featured in the film is Insulin for Life, a not-for-profit organisation founded (and based) here in Australia. There are affiliates all over the world. I’ve known about Insulin for Life (IFL) for a long time and have been aware of the incredibly important work undertaken by this organisation. The objectives of IFL include obtaining diabetes supplies (insulin, syringes, BGL meters and strips) and then donating and distributing them to diabetes associations in countries in need. They also look at developing and implementing sustainable improvements in accessing diabetes supplies in countries in need.
The film last night highlighted a kids’ camp program in Ecuador. The average monthly income for many families in this South American country is $250 and a month’s supply of insulin is $200. Do the maths and think about that for a minute. You can see how dire this situation is for many families. Without IFL, many people in Ecuador would not be able to access insulin to treat their type 1 diabetes. This is just one country supported by IFL.
Today, with National Diabetes Week drawing to a close, have a look at the Insulin for Life website and see some of the amazing and much-needed work they are doing. Supporting them is good karma.
It’s Friday after a very long week, but’s not over yet? So, to keep up our energy, here’s some Georgie Fame to get you (go-go) dancing. Yeh Yeh!
1.13am – Heart thumping at what feels like 1,000,000 beats per minute
1.15am – 1.8mmol/l
1.15am – 10 jelly beans
1.20am – 1.8mmol/l
1.22am – 200ml pineapple juice
1.28am – 1.7mmol/l
1.28am – 10 jelly beans
1.28am – 1 pump’s basal rates reduced to -100% for 30 minutes
1.35am – 1.8mmol/l
1.39am – 1 piece of toast with 2 tablespoons of Nutella
1.45am – 1.8mmol/l
1.45am – 30 minutes under 2.0mmol/l
1.50am – 2 mandarins
1.55am – 1.9mmol/l
2.05am – 1.9mmol/l
2.05am – 5 jelly snakes
2.14am – 1.9mmol/l
2.15am – 60 minutes under 2.0mmol/l
2.15am – 200ml pineapple juice
2.29am – 2.0mmol/l
2.30am – 1 high 5 for hitting 2.0mmol/l
2.42am – 2.0mmol/l
2.55am – 2.0mmol/l
2.55am – 1 fridge raid resulting in 1 small tub peaches and 1 small tub yoghurt
3.13am – 1.8mmol/l
3.13am – awake dealing with this low for 120 minutes
3.13am – 5 very loud curse words beginning with f
3.15am – 20 jelly beans
3.22am – 2.3mmol/l
3.34am – 2.9mmol/l
3.48am – 3.2mmol/l
3.48am – first time in 2 hours and 33 minutes I’ve been above 3mmol/l
3.59am – 3.8mmol/l
3.59am – 1 deep sigh of relief
4.08am – start counting sheep. 1….2….3….4….
4.35am – 1 person with diabetes, wide awake, unable to sleep
Sometimes, it actually is all about numbers….
Last night I was completing an online survey about wellbeing and came to the questions that asked about my health – specifically did I feel healthy?
The answer was yes, I do feel healthy. The only time I don’t is when I am dealing with a cold or virus of some description. Then I generally feel like crap and whinge a lot.
But I do have diabetes – a chronic health condition. Yet I’ve never thought that diabetes makes me unhealthy. Does the simple fact that my beta cells have been AWOL for over 16 years now mean that I am not ‘in the pink’?
To me, health has always been about more than those nonoperational beta cells? Surely that negative gets over-ridden, or at least balanced out, by the many positives in my life.
It had me thinking about health and happiness. I wondered how healthy we can be when we are feeling unhappy. I know that in times when happiness has seemed an abstract concept, I’ve not felt healthy. But this rarely has anything to do with diabetes. My diabetes numbers can look fine, but overall, I don’t feel great, perhaps because I am ‘not looking after myself’ and eating a well-balanced diet (or not eating at all). Perhaps because I just shrink away and don’t surround myself with the things that contribute to my happiness.
The next section of the survey focussed on happiness. Did I feel happy?
My answer to that question at that very moment was also yes. I was in our warm home, dinner was about to be served up to me and I could hear the kidlet in the other room playing with the cat – of course I was happy (the cat? Maybe not so happy as she was being killed with love and kindness)! I was then asked to list the things that contribute to my happiness. That was easy.
I have a family that brings me great pleasure. My husband and daughter as my immediate family, and my (rather huge) extended family of parents, sister, in-laws, cousins, aunts and uncles may be crazy and loud (and at times frustrating) but generally are fun to be around. There is a lot of laughter and isn’t that good for the soul and our health?
I have friends here and abroad who I love. They provide much support, joy and fun.
And I have a job that is rewarding and enjoyable and one for which I feel incredible passion. I feel very fortunate that my nine-to-five isn’t mundane or boring or devoid of any real interest.
I am very lucky to be able to regularly do things that I enjoy – I see a lot of movies and live music and sit in cafés and bake and cook and feed friends and travel and read.
These things contribute to my happiness. And contribute to my sense of wellbeing. Which contribute to my feelings of health.
I do believe that there is an inextricable link between happiness and healthiness. It’s tangled and can be messy. Perhaps happiness also contributes to emotional wellbeing and that leads to good health. I don’t know the answers here. All I know is that I answered ‘yes’ to feeling both happy and healthy. I should feel (and do feel) pretty fortunate for that.
Melbourne is experiencing some very nasty weather today. I’m writing this while sitting in my office eating my lunch and wondering if the roof is about to fly off our building. I’m also expecting the trampoline and television antenna at home to have moved neighbourhoods by the time I get home at the end of the day.
It’s often said that if you don’t like the weather in Melbourne to wait ten minutes and check outside again. It’s true – four seasons in one day is not really all that unusual. The end of a heatwave can see temperatures drop by 20 degrees (Centigrade) in a matter of minutes. Pelting rain can give way to blue skies and sunshine that will result in sunburn.
As a lifelong Melbournian, I’ve learnt to be prepared for all weather contingencies and carry an umbrella, even if my weather app predicts only a 10 per cent chance of rain. Always have an umbrella in the car. Wear layers than can be easily peeled off (or added) as the temperature jumps around. And understand that just because it is sunny this minute, don’t think it will be in half an hour’s time. Because it probably won’t be.
My diabetes contingency purse is the same. It covers a lot of possibilities and emergency situations. There are batteries for my pump, the charger for my meter, a spare cannula and cartridge for my pump, insulin, syringes (in case of pump fail, or if needed to syringe insulin into a cartridge), a five cent coin (new addition!), a spare needle and plunger to refill a cartridge if necessary, a copy of my basal rates (also saved on my iPhone).
And all of this fits into a small bright purse. From Dylan’s Candy Bar New York.
It’s an insurance policy of sorts because I know that as soon as I leave that bag at home, or fail to replace something I use, I’ll need it. I’ll have ignored the low cartridge warning on my pump and be out of insulin; I’ll catch my pump line on a door handle and rip the cannula clean from my skin; my meter will need recharging.
It’s just like those days when I’ve left my brolly drying out on the porch and forget to pack in back in the car. That’s when, in the ten minute drive from home to work, I watch the skies turn from bright, sparkling blue, to light grey to dark, to gloomy black and watch as the rain starts. And there I am in my car, cursing that I forgot the contingency plan. I should know better. Sometimes, I fear I’ll never learn.
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.
Last night was dinner with the ‘D girls’. These three women are some of my most treasured friends, and we have come together over the years because we have external pancreases. (Pancreata?)
They have been a part of my life for over ten years now. I met them all through my work (another reason to be grateful for this job!) but the reason that we’re friends reaches far beyond diabetes.
A night out with these lovely women generally involves much raucous laughter, a lot of inappropriate comments (we think the people at the next table left the restaurant because they were so disturbed by our conversation at one point) and plotting to fix all that is wrong with the world. We share photos of our gorgeous kids – all born around the same time – and talk about our families and friends and work.
Somewhere in there, we reach into our clothes and pull out insulin pumps, or reach into our bags for BGL meters. Talk of diabetes is scarce, but there may be an occasional comment or question. It certainly doesn’t dominate our conversation though.
As it turns out, some of my nearest and dearest friends do have diabetes. But that is not the reason for the friendship. Whilst it can be acknowledged as why we met in the first place, the reason for our enduring friendship is far more than beta cells that ran out on us. The reason I am friends with these three women is because they are smart, funny, beautiful and incredibly talented. I am honoured to call them friends. I love them to pieces and admire their strength, tenacity and protectiveness.
I see the way they deal with diabetes – the complete and utter ‘eff you’ attitude and acknowledgement that it sucks, but it won’t beat them – and know that I need to be surrounded by people like this.
The commonality that brought us together may be completely and utterly crap at times. But when we’re sitting at Marios catching up, laughing, supporting each other, talking a million miles a minute, we don’t care. Because really, it’s just four girls catching up.
It’s Friday; get your weekend started with some New Orleans funk. Here’s Trombone Shorty. (Swoon!)
Albert Einstein is a fraud. He may have worked out that E=mc2 thing and received a Noble Prize in Physics, but he got it all wrong when he defined insanity as doing the same thing over and over again and expecting different results.
Because anyone who has ever had to pretend to be a pancreas, (which, when working, is a magical, perfect organ), will know that the monotony of diabetes, which involves repeating the same things day in, day out, ALWAYS yields different results!
For people with diabetes, insanity is doing the same thing over and over again and expecting the same results. Just doesn’t happen.
This week, I had the same lunch on two consecutive days. Both days, my pre-meal BGL was in the mid 6s, I bolused the same amount of insulin and then sat at my desk for pretty much the next two hours writing and reading. How do you think that turned out?
DAY 1 – 5.6mmol/l (two hours after eating)
DAY 2 – 16.5mmol/l (two hours after eating)
Insanity would have been trying to work out why the hell that happened. Or being surprised at the difference. Sanity is saying ‘that’s diabetes’.
UPDATE
So, within 2 minutes of posting this on Facebook, a deluge of similar posts were listed. Here they are:
Glucolift (makers of the BESTEST glucose tabs in all the lands) have this brilliant infographic (about to be stuck up on my office pinboard)
Kerri at Six Until Me suggests that it’s perhaps diabetes that is the definition of insanity (she might be onto something)
And Sara from Moments of Wonderful wrote this as part of this year’s Diabetes Blog Week.
Great minds think alike?
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.
Diabetogenic 