Diabetogenic

Kindness in care

February 5, 2018 in Communication, Diabetes, Engagement, Healthcare team, Language, Real life | 3 comments

It’s easy to remember the difficult moments we’ve experienced at the hands of healthcare professionals who have been less than kind.

And, equally, we remember those moments where kindness was shown in spades.

I know I certainly remember moments of kindness in healthcare. And those moments transformed me. I so appreciated the kindness that came from HCPs at moments when a tsunami of grief or despair or pain or a diagnosis washed over me, knocked me to the ground and left me doubtful that I would ever be able to get back up again.

I remember kind words, the silences afforded to me giving me a moment or two (or dozens) to think, the time I was given to understand what was happening and formulate a plan to manage… I remember them all because they left me stronger, more determined, better supported and far more empowered to cope.

Kindness is a highly underrated quality in healthcare. I’m not sure how it should be included in a curriculum full of critically essential information, but it needs to be taught from the very beginning of any healthcare courses, and it’s importance highlighted and stated over and over and over again.

In the last year or so, I’ve read a few books written by (as the publicity often claims) ‘healthcare professionals turned patients’. (I’ve found this to be quite an odd term, because surely everyone at one point or another has been a patient.)

A recurring theme throughout the books is how difficult the HCPs have found it being on the other side of the HCP / patient divide. They often appear astounded at the red tape and bureaucracy they came up against, the hoops they need to jump through to receive the appropriate care, and the sheer unfriendliness of the system. And they write about the extraordinary moments of kindness that often feel far too infrequent.

Sometimes, they have written about how they didn’t realise that the way they themselves behaved could be interpreted as having a lack of consideration and kindness – explaining it was simply their manner and how they made sure they got through the day as efficiently as possible in a system often built on the foundation of complete and utter inefficiency. And yet now…now they understood.

While the books I read have been beautifully written, heart breaking at times, and often end terribly, the stories in them were not surprising. They tell truths about the system – and the lack of kindness – that people with diabetes face every day in every encounter.

When Kate Grainger launched #HelloMyNameIs, she was echoing the calls of countless people before her: please treat us like people. Please tell us what you are doing here. Please know we are scared. Please tell us who you are and what your role in my care will be.

She did it beautifully, simply, eloquently and changed the landscape of healthcare communication. I am so sad that she had to be so ill for this to happen. But her legacy is one for which I am so grateful.

Kindness in healthcare makes all the difference. Some may think it is completely unnecessary and that as long as we are receiving the right diagnosis, good care and excellent treatment, there is nothing more we need. But that is not true. Kindness adds a human element. We need warm hands, warm hearts and warm words alongside the cool tech, sterile environments and scary diagnoses.

Kindness takes no more time; it takes no more effort. But it’s effects can indeed be monumental.

Moving through…not on

February 2, 2018 in Diabetes, Real life | 3 comments

Recently, I spoke with someone who had been diagnosed with type 1 diabetes about twelve months ago. A mutual friend had connected us.

‘How long have you had diabetes?’ That was her first question.

‘Almost 20 years,’ I said.

‘I’m really struggling. Will I move on and get over it?’

I wish I had been able to say something to ease her anxiety. Instead I just nodded and told her she would be okay.

But I haven’t been able to stop thinking about that question.

Because, the truth is, I don’t think we do move on. I don’t think we do get over it. We move through it. We learn to get through it, but it’s a chronic health condition and it never, ever goes away.

I went through some tough times a few years ago and I remember a conversation with a friend who was a great source of comfort to me. ‘When does this awfulness stop? When does it go away?’ I asked, tearily, one day.

‘It doesn’t, but it will get easier. Think of it like this… You’re in your car and you’ve just driven past a horrific car accident. You can’t stop, you have to keep driving, but you are driving very, very slowly because there is a lot of traffic backed up. You’re shocked and can’t believe what you have just seen. It’s gruesome. You look in the rear view mirror and you can still see it – all the details, all the goriness, all the pain.

You can’t help but keep checking the mirror. Every time you do, you feel the horror of what you saw, but the accident is a little further away in the mirror’s reflection, so the detail of what you are seeing is a little less.

After a while, all you can see are some flashing lights and a crumpled mess, but no details – it’s starting to be a blur and the shock and pain you felt is starting to numb.

And then, eventually, after a long time, you look back and you see nothing. You’re on the open road, going about your driving, and all you see behind you is road and other cars. But you still think about what you saw. You still have flashes of it. You still remember it.

It doesn’t go away – you don’t get over it. But you got through it. And your life will be forever changed by it. But it will always be there.’

I remember being incredibly reassured by this analogy. And it was actually so true. The pain I felt did wane – I never forgot it and I’m not ‘over’ it. But it is far more distant in my rear view mirror now and eventually, it may completely disappear from view. But it is still part of my memory bank.

I’d never applied this way of thinking to diabetes – that analogy belonged to a time of incredible and quite acute emotional pain – but it actually is perfect for diabetes too.

I wish my response to my new friend’s question was simply: ‘I don’t think that I have moved on from diabetes; I don’t think I am over it. But it is easier today than it was twenty years ago. And every day I move through it, and I get through it. I hope that gives you some comfort.’

I look at those who have gone before me and those who are living a diabetes life alongside me and I see us all moving through it. Some days are harder, some days are easier. But we keep moving. We move through diabetes. As best we can.

Spare a Rose – kickoff

February 1, 2018 in Advocacy, Awareness, Diabetes, DOC | Leave a comment

It’s that time again. Supermarkets are covered in red heart-shaped foil balloons, fluffy heart-shaped pillows and velvet heart-shaped boxes of chocolates. Florists are about to hike up the price of roses by three or four hundred percent. And the sex shop in my neighbourhood has an odd display of edible underwear in the front window, surely begging the question: who the hell actually thinks that is a good idea as a gift for any occasion? Anyway, I digress..

It must be Valentine’s Day.

We don’t do Valentine’s Day in our place. It is a Hallmark occasion if ever there was one and quite frankly, the idea of being loving and affectionate and amorous one day a year is ridiculous and would leave me feeling very short-changed.

But despite my complete and utter aversion to organised romance, I have, for the last few years, thrown my weight behind Spare a Rose, Save a Child. And today, with two weeks until Valentine’s Day, it’s time for me to start talking about it again…A reminder of how the whole Spare a Rose thing works:

Instead of giving your Valentine twelve (overpriced) roses, give them 11, saving yourself about AUD$6. Donate that six bucks you’ve saved to Spare a Rose.

All funds raised by Spare a Rose go directly to the Life for a Child program which provides insulin and diabetes supplies for kids in need and your six dollar donation is enough to provide a month’s worth of insulin to a kid who might otherwise not have any.

It’s pretty easy and you don’t need to be good at maths to work out how much to donate to actually make a difference.

Of course you can give more – you can forgo the flower thing altogether, donating the cost of the whole dozen (meaning you’ve just provided a full year’s worth of insulin for a child). Aaron knows my favourite sort of vase on Valentine’s Day is an empty one, with the cost of the whole bunch going to Spare a Rose.

You know, here in Australia it the most it will cost to buy insulin is $39.50. If you have a healthcare card it’s $6.40. We really are so fortunate that the vast majority of Aussies don’t have to worry about insulin prices increasing at terrifying rates or insulin not actually getting into the country. I don’t for a moment think our healthcare system is perfect.

But it is a far cry from places where children and adults are dying because they cannot access insulin. That is the reality for a lot of people, and we can do something about it.

Six dollars. That’s all it takes. And it is as easy as clicking here. Please donate.

DISCLOSURE

Spare a Rose Save a Child is an initiative of a few well known advocates from the DOC in the US. In the last couple of years, they’ve invited me and advocates from the UK to be involve in the campaign. (Obviously, I receive no funding to work on this, and am doing it because I believe in it.)

Internet jumble #28

January 31, 2018 in Communication, Complications, Conferences, Diabetes, Engagement, Health, Healthcare team, Interweb Jumble, Peer support, Real life, Social media, Wellbeing | Leave a comment

New year, new jumble. And lots of saved links from the last few weeks to share.

#OzDOC 2.0

Did you know that after OzDOC had it’s ‘final’ tweetchat at the beginning of December last year, it’s had a reboot and is now continuing to go at a great rate. David Burren (AKA Bionic Wookiee) kicked off the chat but is looking for people to volunteer to the moderators’ roster. There’s a brand new Twitter account to follow (@OzDOC_host), but the #OzDOC hashtag continues to shine brightly.

Same #OzDOC time, same #OzDOC channel. (i.e. Tuesdays at 8.30pm AEDT)

And while we’re talking tweetchats…

…make sure you keep an eye out on the #GBDOC tweetchats, which also had a bit of a restart last year and are going absolutely brilliantly. Follow @GbdocTChost for topics and moderators.

Now is a great time for Aussies to participate in #GBDOC because with the time zone difference, the chat is on Thursday 8am AEDT…which is actually quite pleasant. (It all goes to pot and becomes more difficult when daylight saving kicks in/out in respective hemispheres in coming months, but for now, it’s certainly manageable!)

Jane’s profile

It’s no secret that I’m a huge fan of Professor Jane Speight and I make no apologies for mentioning her so frequently on this blog. She is truly a champion for and of people with diabetes and her pioneering work on diabetes and #LanguageMatters, and social stigma are changing the landscape for those of us living with diabetes.

Last week, a profile of Jane and her work was published in The Lancet. Congrats, Jane. I can’t imagine a more worthy recipient of this attention. Please keep on keeping on. I for one am very grateful to have you on our side!

Read the article here – it’s free, but you will need to register/log in to access it.

(Click photo for source)

Dear ‘patient’

I was really interested to read this BMJ Opinion piece about medical letters, with the writers suggesting that instead of addressing ‘report letters’ to referring (and other) doctors and HCPs, that they should be addressed directly to the person, CCing in the doctor who would ordinarily have been sent the letter.

I love that idea! My endo generally copies me in on anything she sends out to my other HCPs to keep me in the loop, but I think that actually writing directly to me is even better.

HCPs would need to completely reconsider the language they adopt, the terminology they use and the overall tone of the communication, and I believe that there is nothing that should be shared with another HCP about me that shouldn’t be shared directly with me.

Interesting idea. And interesting to see if it has legs…

Writing for Grumps

After writing for me a few weeks ago, I returned the favour and wrote a post for The Grumpy Pumper. (I think the deal he made was something like ‘I’ll show you mine if you show me yours’, so I had to come up with the goods.)

This is all part of Grumps’ attempts to get people with diabetes speaking about #TalkAboutComplications in an open and honest way to help reduce the shame that seem to go hand in hand with a complications diagnosis.

Get ready for Spare a Rose spam

This year’s campaign is about to kick off. And if you want to know why I support this campaign, here’s just one reason.

Hospital admissions and T1D study

Rebecca Munt from Flinders University is currently enrolled in a PhD at Flinders University and is looking for participants in her research.

The focus of her study is to explore the experiences of self-management for adults with type 1 diabetes in the hospital setting (when T1D is not the primary admission diagnosis). If you’re interested in participating in Rebecca’s study, have type 1 diabetes, are over 18 years of age and have been admitted to hospital within the last two to five years (not for diabetes), please call Rebecca on (08) 8201 5749 or email rebecca.munt@flinders.edu.au

(The project has Social Behavioural Research Ethics Committee approval from Flinders University.)

Future of medical conferences

I have been very vocal in recent years about the shortcomings of diabetes conferences, specifically the lack of involvement and engagement of people with diabetes as part of the planning, running and presenting of the conference. So this piece really resonated about why medical meetings need a revamp, and some ideas for what could be done differently.

(Click for original tweet)

Because #NothingAboutUsWithoutUs.

Does the story we know and love about Banting need a rewrite?

I was fascinated to watch the short documentary shared in this story which suggests that the frequently-told story of the discovery of insulin is missing out a critical part.

It was the best of times, it was the worst of times…

This blog post by Sue Robins detailing two vastly different medical appointments is compelling – and quite heartbreaking –reading.

More D Merch

Totally true!

Click image to get your own!

Finding the light

January 30, 2018 in Communication, Diabetes, Real life, Wellbeing | 6 comments

It’s not really a great day in diabetes with news all over my SoMe feeds about a study published in Diabetologia which links high glucose levels with dementia, and a report from the Baker Heart and Diabetes Institute showing Aussies with type 2 diabetes are twice as likely to suffer sudden cardiac death.

Perspective is really important on days like today. I’m not in any way wanting to minimise the significance of the these reports – obviously we should take them seriously. But equally, I think we also need to find some positives in the diabetes space and remember that it is not all dire and critical.

Diabetes is serious and anyone who thinks otherwise doesn’t know diabetes. This weekend, a true giant in Australian diabetes died. Hal Breidahl was a pioneer who co-founded the Australian Diabetes Society. In a piece he wrote back in 1980 (and the language reflects that it was written in 1980!!!) about what people with diabetes want to know he states:

All diabetes is severe – unless adequately controlled. Patients often want to know ‘how bad is my diabetes?’ or ‘how severe is the condition?’ or ‘how high is the blood sugar?’ The notion that ‘I’ve only got a touch of sugar’ or ‘I only have mild diabetes’ should not be allowed to remain…

We get it. Diabetes is serious. Nasty things happen. We know it.

But I want to add to this. There is – there has to be – more to diabetes than the negative stories that make the news. Because in amongst those stories there are these things to remember, and I seek them out each day:

Diabetes is serious, but it is also the condition I need to live with and find some semblance of balance as I work out how to fit it into my life.
I need more than just the negatives, or bad news highlights. Because not offering the things I can do to live as best I can does nothing for my mental health – or for my diabetes health.
Attention grabbing headlines that only tell part of the story do nothing to make me believe that I will be able to live well with diabetes. Also, ‘live well’ means different things to different people and it’s a moveable feast, but I know that the idea that we need to be complications-free to be living well is a flawed and dangerous idea.
There is a lot of positive research about diabetes and we need to know about that too. Like this which reports people with type 1 diabetes are living longer.
There is an undeniable truth that reading over and over and over again that diabetes is going to increase my risk of <insert whatever you bloody well feel like> is exhausting. I feel as though I have been kicked in the gut every time it happens even though I know that I am living the best diabetes life I possibly can.
While diabetes may increase the risk of all sorts of things, sometimes it just doesn’t, because sometimes it’s not diabetes. If others could remember that, it would be useful so that any other affliction isn’t automatically lumped in the ‘It’s because you have diabetes’ basket, and not investigated properly.
If you are talking about the nasty things that diabetes seems to increase the risk of, please acknowledge that the tools we have to live with this condition are not up to the task. Any failure is not mine as a person with diabetes. It is the failure of a body part that decided to not to what it is supposed to. It is a failure of the insulins currently available not being able to act fast enough. It is a failure of monitors not being accurate enough and delivery devices not delivering properly. Please remind people of that when you also mention that out of range glucose levels (AKA diabetes) means that we’re at a higher risk of not-so-great things.
The bad stuff? It may not happen.

On a day like today when I am reading a lot about the diabetes things I really don’t want to think about, it is especially important for me to find some of that balance and search out the good news. Because otherwise diabetes tips into a really dark place where good self-care becomes almost impossible. There is light in diabetes. And sometimes, we need some help finding it. Sometimes we need to search a little harder to see it. Today is one of those days.

Georgie at #IDF2017

January 25, 2018 in Awareness, Diabetes, Health, Mental health, Real life, Stigma | Leave a comment

There were some really important and impactful sessions in the Living with Diabetes stream at #IDF2017 in December last year, but perhaps one of the most significant was the final session. Chaired by Professor Jane Speight, the session was titled ‘Diabetes and mental health: distress, diabulimia and emotional wellbeing’.

Talk about finishing with something to get people thinking and talking!

Bill Polonsky kicked off the session with a talk about how emotional wellbeing is affected by diabetes, and offered some ideas for addressing these issues.

(Can I just say what a stroke of genius it was to have Jane Speight and Bill Polonsky on stage together?! To have two champions of diabetes behavioural psychology in one place was definitely a highpoint of the Congress, and anyone who chose to go to a different session missed out. Big time! … Credit where credit is due to us all, Manny, Mary, Hakeem and Kelly!)

The session ended with Erika Backhoff from Mexico who gave an outstanding presentation on diabetes distress and the importance of appropriate training and understanding of the difference between diabetes-related distress and depression.

But for me, the highlight of the session – and one of the highlights of the entire stream – was Georgie Peters speaking about diabetes-related eating disorders. (Georgie writes a great blog that you can read here.)

Georgie began by sharing her own story of insulin manipulation. I’m not going to write anything about this part of Georgie’s talk, because you can see and hear it all here. (You’ll need to have a Facebook account to view it.)

Often, when people speak about living with a health condition, they are called ‘brave’. I absolutely hate it when people refer to me as brave because I live with diabetes (and all that comes with it). I’m not brave, I’m just doing what I need to do to stay alive.

But Georgie WAS brave and I’ll explain why.

Often, when we hear from people living with diabetes, what we hear about is people conquering mountains (literally and figuratively). We hear tales of the super heroes running marathons and winning medals. These are the socially acceptable stories of living with a chronic health condition: the ‘I won’t be beaten’ anecdotes. They give hope, are meant to inspire and make those not living with diabetes feel better about things because suddenly, it seems that this health condition is manageable and everyone with it is a champion.

But the reality for most people with diabetes is the same as most people with diabetes – we don’t run marathons, we don’t climb mountains, we don’t win gold medals. We are just doing the best we can with the hand we’ve been dealt. And sometimes, we deal with difficult stuff.

Sharing stories of the tough times and the challenging things that often go hand in hand with diabetes is not always easy – for the person sharing the story or for those reading or listening to them

But perhaps that’s exactly why we do need to hear about these stories, and ensure stories like Georgie’s are heard and given a platform.

Just because something is difficult or uncomfortable to listen to doesn’t mean that it should be hidden. This is why people don’t seek the care and assistance they need. It’s why people think they are the only one’s struggling and why they don’t know where to turn.

I could see some people in the audience shifting uncomfortably in their seats as Georgie eloquently, determinedly – and completely unapologetically – shared her experience and, most usefully, offered suggestions for how to work with people with diabetes and eating disorders. I know that I left with a far better understanding of the topic. And an even more resolute desire to keep these types of issues in the public domain.

Disclosure

I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered my travel and accommodation costs and provided me with registration to attend the Congress.

Georgie owning the stage at #IDF2017

Resolve

January 23, 2018 in Awareness, Diabetes, Engagement, Health, Healthcare team | 5 comments

As explained previously, I don’t do new year’s resolutions for the simple reason that I never stick to them. I’m unable to do the whole SMART thing and make my goals actually attainable, and so after the shortest time (a day… an hour… minutes), have thrown in the towel.

However, I am not above making resolutions for others. Because that’s the sort of person I am. Caring and sharing. Or bossy. You decide.

Here are some New Year’s resolutions for HCPs working with people with diabetes to consider:

Use language that doesn’t stigmatise – both in front of PWD and away from us.
And while we’re talking words: use words we understand. We may know a lot about our health condition, but we don’t necessarily understand all the medical speak. If you are talking to us, check in to make sure we actually understand what you are saying to us.
Lose the judgement. We all judge; we do it subconsciously. Try not to.
Remember who is in charge. While as a HCP you may have a direction that you would like us to take, or our consultations to follow, that might not work for the person with diabetes. Our diabetes; Our rules. Learn the rules and stick to them. (Also, there are not really any rules, so don’t get shitty when we seem to have no idea what we’re doing.)
Remember this: no one wants to be unhealthy. Or rather, everyone wants to be the healthiest and best they can be. Use this as an underlying principle when meeting people with diabetes.
Sure, offer help with setting goals. We all like to work towards something. But setting the goal is actually the easy part. Help us work out the steps to get there. If someone comes to you and wants to lose weight or reduce their A1c, that’s awesome, but they are big asks. So, tiny steps, easily achievable mini-goals and rewards for getting there.
Acknowledge and celebrate victories. You know that person with diabetes sitting opposite you? For some, just getting there and being there is a huge achievement. Recognise that. Showing up with some data – in whatever format? That’s brilliant – so say so. Sure, it may only be three BGL readings from three different meters and all at different times, but that is a start.
Diabetes is rarely going to be the most important thing in someone’s life. Please don’t ever expect it to be.
Include us in every discussion about us – from letters to referring doctors or others in our healthcare team and when it comes to any results of bloody checks or scans. Make sure we have copies of these and understand what they all mean.
Please be realistic. If someone is currently not checking their glucose levels, don’t ask them to suddenly do six checks a day, analyse the data and send you pretty graphs. Small, attainable, reasonable goals. (Once, during a period of particularly brutal burnout when my meter was not seeing the light of day, my endo asked me to do two checks a week: Monday morning before breakfast and Wednesday morning before breakfast. That was it. Next time I went back to see them, I’d not missed a single one of those checks. And even managed to do a few others as well. I felt amazingly good for actually having managed to do what was suggested and eager to keep going from there.)
Ask us if we want to be pushed a little. Are we interested in new technologies to try, different meds to consider, a more aggressive treatment plan? Don’t assume you know the answer. Present us with the options and then help us decide if it’s something we want to try.
Equally, if we’re pushing you because we want something new or more intensive, help us get it, learn about it and support our decision to try it.
Do not dismiss peer networks and peer support. Offer it, direct us to it, encourage us to find it.
Be on our side. We need champions, not critics. We need people to cheer us on from the sidelines, go into bat for us when we need an advocate and take over the baton when we’ve done all we can (and shit yeah! – that’s three sports analogies in one dot point – I deserve a gold medal!)
Understand that diabetes does not start and end with our glucose levels. There is so much going on in our head and sometimes we need to be able to get that sorted before we can even begin to think about anything else. Get to know some diabetes-friendly psychologists, social workers and counsellors, and suggest we see them.
Please, please, please, when it is time for our appointment, do nothing but be there with us. Of course interruptions may happen, but do apologise and excuse yourself – and do everything possible to minimise them. Look at us, take notes on a piece of paper – not a computer, and listen to us.
Again…listen to us.
Explain to us why you feel we need to have something done. It could be as simple as asking us to step on the scales (which often is actually not simple, but fraught) or it could be asking us to have a scary-sounding and invasive procedure. Why are you suggesting this? Is this the only course of action?
Treat us like a person, not our faulty body part. And see all of us – not just our missing islet cells. Because really, if all you are seeing is those missing islet cells, you really are not seeing anything at all.

Complications and stigma: their inextricable link

January 22, 2018 in Complications, Diabetes, DOC, Peer support, Real life, Social media, Stigma | 1 comment

Towards the end of last year, I wrote about some things happening online trying to encourage people to openly and freely speak about being diagnosed and living with diabetes-related complications.

When conversations about diabetes complications are brought into the public domain, often two things happen.

Firstly, people start to talk. That whole cornerstone of peer support – reducing isolation and sharing stories – flings doors and windows wide open, and people, often gingerly at first, start to offer their own experiences. Inevitably, someone will say that they don’t speak about their complications because they fear the judgement that will follow. Or that they believe they are the only one their age facing complications because they have never met another person, or read a blog post from another person sharing a similar experience.

Secondly – and most damagingly – there is judgement. And it comes in spades, often sending some of those who had started to open up retreating back into the depths of diabetes taboos. This is not helpful for anyone.

So I wasn’t surprised when, during a useful discussion starting online about living with diabetes related complications – which resulted in some people willingly talking about their own experiences – the horribly judgemental comments started infiltrating the conversation.

I shared this post that I wrote almost five years ago about why we need to reconsider the way we speak about diabetes complications as I thought it was relevant to the current online conversation. In fact, everything I wrote in that post was still true because diabetes continues to be a terribly stigmatised condition and, within that, those of us living with complications seem to face additional stigma and judgement.

If for one second anyone doesn’t believe that statement, here are just some of the comments that I received (on LinkedIn and Twitter) after sharing the post:

‘If considering that many people who are type 2 diabetic quite simply exercise too little and eat too much fat…… which has immense financial consequences for the provision of healthcare…….. how else do you propose to get these people to lose weight and stop emburdening (sic) themselves on our NHS? If you take away the need to shame them you take away the most powerful way of making them take responsibility for their health.’

‘Sorry Renza but if we get complications of diabetes then we have failed. We are each responsible for own health and must try to maintain it at all cost.’

‘Diabetic complications do not happen with ‘perfect’ blood sugars. I agree that we must be supportive and sympathetic and the insulins available don’t help but it’s still the patient’s responsibility and not the doctors. Sorry if this doesn’t bode well with you.’

Is it any wonder that people are reticent to speak about developing complications if people are thinking like this?

I have written before that I believe diabetes has an image problem, because I can’t think of any other health condition that, if a treatment does not get the desired outcome, the person living with that condition is blamed. I have never heard someone being blamed if the cancer for which they are being treated does not end up in remission. I don’t know of anyone with rheumatoid arthritis who is blamed if their pain increases or their mobility decreases. I’ve not heard of someone with psoriasis being accused of not caring for themselves if their skin flares up.

But all bets are off when it comes to diabetes and fingers are pointed fairly and squarely in the face of the person living with diabetes if they develop complications.

Diabetes complications happen. It is, unfortunately, a reality for many people living with diabetes. I’m not trying to be negative or scare people, but we know that the longer we live with diabetes, the more likely we are to develop complications.

In this post, The Grumpy Pumper says: ‘Complications are a hazard of what we have. Not a failing of what we do.’ Maybe if we take that as the starting point we can take away the blame. And maybe if we take away the blame, we break down the stigma. And maybe if we break down the stigma, we can start having a real discussion about how we treat complications if they develop, and get to treating them.

And maybe if we stop thinking that developing diabetes and anything that happens after living with it is a shortcoming we can stop feeling so judged and shamed, because others will stop judging and shaming us.More to read on this topic:

Melissa Lee wrote this piece.

Riva Greenberg shared this one.

Sarah K from Sugarbetic wrote this.

And this from Mel Seed.

Fragments from the DOC

January 19, 2018 in Diabetes, DOC, Social media | 1 comment

It’s 42 degrees Celsius today – or about a million and a half degrees Fahrenheit. We can all agree that it is hot.

So, obviously, it’s a great day to move offices.

As I have unpacked and started to set up my new space I’ve been piling together bits and pieces collected from DOC get togethers. Which means that as I sit here in my office overlooking the city skyline, I actually have around me friends from all over the globe.

And my world once again feels that little bit smaller. And I, in my corner of Melbourne, feel part of something so much bigger.

I need – revisited

January 17, 2018 in Devices, Diabetes, Family, Health, Healthcare team, Real life, Reblog, technology, Wellbeing | 1 comment

I wrote this post on this day last year and today, when it came up in my TimeHop app reread it and realised it is a good one to consider at the beginning of the year as I’m trying to get myself in order. I’ve made some edits to some of the points due to changes I made last year in the way I manage my diabetes. (The original post can be found here.)

I suppose that I was reminded that being good at diabetes – something I’m afraid I miss the mark on completely quite often – does involve others who sometimes don’t necessarily understand what it is that I really need. And I can’t be annoyed if they don’t intrinsically know what I want and need if I can’t articulate it. This post was my attempt to do just that.

______________

Sometimes, I’m a lousy person with diabetes (PWD). I am thoughtless and unclear about what I need, have ridiculous expectations of others – and myself, and am lazy. But I’m not always like that. And I think I know what I need to do to be better.

Being a better PWD is about being true to myself. It is also about reflecting on exactly what I need and I hope to get it.

I need to remember that diabetes is not going away
I need to remember that the here and now is just as important as the future
I need to remember that I don’t have to like diabetes, but I have to do diabetes
I need to remember that the diabetes support teams around me really only have my best interest at heart, and to go easy on them when I am feeling crap
I need to empty my bag of used glucose strips more frequently to stop the strip glitter effect that follows me wherever I go – edit: while this is true, I do have to admit to having far fewer strips in my bag these days due to my rather lax calibration technique
I need to remember that it is not anyone else’s job to understand what living with my brand of diabetes is all about
I need to remember that the frustrating and tiresome nature of diabetes is part of the deal
I need to be better at changing my pump line regularly – edit: even more so now that I am Looping and think about diabetes less than before.
I need my diabetes tasks to be more meaningful – quit the diabetes ennui and make smarter decisions
And I need to own those decisions
I need to see my endocrinologist – edit: actually, this one I managed to nail last year and even have an appointment booked in for a couple of months’ time!
I need to decide what I want to do with my current diabetes technology. There is nothing new coming onto the market that I want, but what about a DIY project to try something new? #OpenAPS anyone…? – edit: oh yeah. I started Looping….
Or, I need to work out how to convince the people at TSlim to launch their pump here in Australia – edit: even more relevant now after yesterday’s announcement that Animas is dropping out of the pump market in Australia
I need to check and adjust my basal rates
I need to do more reading about LCHF and decide if I want to take a more committed approach or continue with the somewhat half-arsed, but manageable and satisfactory way I’m doing it now – edit: sticking totally to the half-arsed way and happy about it!
I need to remind myself that my tribe is always there and ask for help when I need it
I need to make these!

And being a better PWD is knowing what I need from my HCPs and working out how to be clear about it, rather than expecting them to just know. (I forget that Legilimency is not actually something taught at medical school. #HarryPotterDigression)

So, if I was to sit down with my HCPs (or if they were to read my blog), this is what I would say:

I need you to listen
I need you to tell me what you need from me as well. Even though this is my diabetes and I am setting the agenda, I do understand that you have some outcomes that you would like to see as well. Talk to me about how they may be relevant to what I am needing and how we can work together to achieve what we both need
I need you to be open to new ideas and suggestions. My care is driven by me because, quite simply, I know my diabetes best. I was the one who instigated pump therapy, CGM, changes to my diet and all the other things I do to help live with diabetes – edit: And now, I’m the one who instigated Loop and built my own hybrid closed-loop system that has completely revolutionised by diabetes management. In language that you understand, my A1c is the best it’s ever been. Without lows. Again: without lows! Please come on this journey with me…
I need you to understand that you are but one piece of the puzzle that makes up my diabetes. It is certainly an important piece and the puzzle cannot be completed without you, but there are other pieces that are also important
I need you to remember that diabetes is not who I am, even though it is the reason you and I have been brought together
And to that – I need you to understand that I really wish we hadn’t been brought together because I hate living with diabetes – edit: actually, I don’t hate diabetes anymore. Don’t love it. Wish it would piss off, but as I write this, I’m kinda okay with it
I need you to remember that I set the rules to this diabetes game. And also, that there are no rules to this diabetes game – edit: that may be the smartest thing I have ever written. I’d like it on a t-shirt
I need you to understand that I feel very fortunate to have you involved in my care. I chose you because you are outstanding at what you, sparked an interest and are able to provide me what I need
I need you to know that I really want to please you. I know that is not my job – and I know that you don’t expect it – but I genuinely don’t want to disappoint you and I am sorry when I do
I want you to know that I respect and value your expertise and professionalism
I need you to know that I hope you respect and value mine too.

And being a better PWD is being clear to my loved ones (who have the unfortunate and unpleasant experience of seeing me all the time – at my diabetes best and my diabetes worst) and helping them understand that:

I need you to love me
I need you to nod your heads when I say that diabetes sucks
I need you to know I don’t need solutions when things are crap. But a back rub, an episode of Gilmore Girls or a trip to Brunetti will definitely make me feel better, even if they don’t actually fix the crapness
Kid – I need you to stop borrowing my striped clothes. And make me a cup of tea every morning and keep an endless supply of your awesome chocolate brownies available in the kitchen
Aaron – I like sparkly things and books. And somewhere, there is evidence proving that both these things have a positive impact on my diabetes. In lieu of such evidence, trust and indulge me!
I need you to know I am sorry I have brought diabetes into our lives
I need you to know how grateful I am to have you, even when I am grumpy and pissed because I am low, or grumpy and pissed because I am high, or grumpy and pissed because I am me.
Edit: I need you to keep being the wonderful people you are. Please know that I know I am so lucky to have you supporting me.