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On Sunday, I pottered around the front garden, doing a bit of weeding and tidying up and decided to cut a couple of small branches from the beautiful Little Gem magnolia trees we have along the fence-line, doing their best to hide us from the bluestone lane that runs along the side of our house.
I took them inside and arranged them in the largest vase in the house, setting it in the middle of the table in the kitchen. They looked magnificent – the leaves are the most beautiful glossy dark green on one side and a matte brown on the other.
Standing in the kitchen later that day, I said to Aaron ‘Aren’t the magnolia leaves gorgeous?’ ‘Yep,’ he answered. And then added ‘Are they steel magnolias?’
The term steel magnolia is a term used in the US South and refers to a woman who is traditional and feminine (that’s the magnolia part) and strong (that’s the steel part). I didn’t know this until quite recently – it isn’t a term we use here in Australia and for me, it was just the name of a film.
I can remember first watching the film years and years ago when I was babysitting. I can’t remember who I was babysitting, but I know that the kid was in bed and I was looking through the families VHS collection (I said it was a long time ago!) and there on the shelf was Steel Magnolias. I popped the tape in and watched it, and was a completely dishevelled mess of tears by the end of it.
There was no comprehension of what it meant in terms of someone living with diabetes – I had no idea. And yet, a little seed was planted: women with diabetes shouldn’t have babies or they will die. From somewhere, the seed became a huge tree the day I was diagnosed with diabetes, because one of the first questions I asked the endo treating me on 15 April 1998 was ‘Does this mean I can’t have children?’
On Sunday night, as I was flicking through the TV channels, there in front of me was the scene in the hair salon from Steel Magnolias. It was early on in the movie, and the women were discussing Shelby’s wedding (‘My colours are blush and bashful’).
I snapped a photo and snapped off the TV quickly, because I knew watching Julia Roberts have a hypo in a hair salon, and then two hours later die after having just had her beautiful baby was not going to be a good way to end the weekend.
I joke about this movie, I quote this movie, (frequently a juice is accompanied with the comment ‘Drink your juice Shelby’), and I shake my head at how ridiculous it is and how untrue – or at least old-fashioned – it is in its portrayal of diabetes and pregnancy. Most women with diabetes I know have a Steel Magnolias story.
I may mock it. But there is no way that I can watch it. Which is what I said on Facebook when I posted the photo I had just snapped of the TV.
The comments after my photo (and in some private messages) were from friends around the world with diabetes. The impact and consequences of this movie for women with diabetes – many of them having seen it for the first time as children or teens – is far reaching and actually did shape their decisions about having babies.
Yesterday, as I was standing in the kitchen making dinner, I walked over to the leaves on the table and gently rubbed one between my fingers. I thought of how in a few months’ time the trees out the front would be covered in beautiful white flowers that last for days before their beautiful petals drop to the ground. ‘White flowers‘, I thought, and shook my head because I always connect them with babies – my babies – lost.
And then my kid ran into the kitchen to tell me about something that had happened that day. I listened to her and watched her unstack the dishwasher, barely pausing for breath as she told me her funny story. We giggled together and I reached out and gave her a quick hug. And as I do more and more often, I marvelled at her just being there. That movie terrifies me. But not as much as the thought of not having had my baby girl.
Oh, Melbourne. How lovely it is to see your gorgeous self and drink your exquisite coffee. How miserable it is to be in your ridiculous Winter and to not be walking the streets of New York still, but I’m moving on….
Yep – I’m back home and, today, back at work and the reality of life is setting back in. Words cannot express how thrilled we were to see our kid after three weeks of being neglectful parents (her words), but on our last day in NY, when I checked the weather forecast for Melbourne, I did think about the logistics of sending for her to join us in the sunny Big Apple, rather than return to her here.
Lots and lots and lots to report back – both from the ADA conference in New Orleans, as well as the two weeks on the road, exploring Memphis and Nashville and returning to the familiar streets of New York. Stay tuned!
But for now, I am getting my head around a few new things on the diabetes landscape – mainly the changes for accessing NDSS supplies is different. I did indeed make sure that I had plenty of pump consumables and strips prior to going to the US, so at this stage, I am okay for supplies. But I do need to get in touch with my local pharmacy and have a chat about their processes for accessing what I need when I need it. I am most curious to see how the new program will work.
Of course, we’re in a position of complete and utter uncertainty as to what is going to happen following our federal election on Saturday. With bipartisan support for CGM subsidies, it is good to know that whoever forms government has pledged to make at least one aspect of diabetes a little more affordable to some PWD. Watching the roll out and implementation will be most interesting.
So for today, I am sorting through the debris from the conference and getting back on track for a very busy couple of weeks. It’s nice to be back. And it’s nice to be writing again. Come back and check in again if you get a chance.
Conference debris
My head is full of lists:
- Packing list
- Travel checklist
- Work to do list
- Hug-the-kidlet-a-million-times-before-we-leave-her-for-three-weeks list
- Diabetes-supplies-for-three-weeks-away list
And a list of great things I’ve seen online lately…
PLAID
Do you read PLAID – a research journal with a focus on people living with and inspired by diabetes? If not, you should. Why? Because it’s awesome!
Here’s the link to the latest edition. I’m really proud to have contributed to it because it is (as already mentioned) awesome, and this edition is all about the patient perspective. I sit very comfortable in there!
Unspeakably Wonderful
A new movie about Banting and Best and the discovery of insulin is hoping to be made by UK production company AngryMan Pictures. Details for how you can contribute to their crowd funding campaign are here.
Diabetic Living online
The Australian edition of Diabetic Living magazine has relaunched its website with a gorgeous new look. Check it out!
Totally (dia)badass
Take 5 minutes…
…and read these great blog posts that have been recently published:
- Anyone thinking of starting on an insulin pump and wanting a front seat view into what it’s all about should jump on board Type 1 Writes. Frank is a couple of weeks into his pump start and is sharing lots about what he is learning. I’ve been pumping for over 15 years now so have completely forgotten about dealing the challenges and successes of starting pump therapy.
- Lots of posts coming in from people who were at #DXSydney, sharing their experiences of using Libre. This post listed all the people who attended with links to their blogs. Have a read and share your experiences too.
- The Grumpy Pumper is a man of few smiles and, it would appear, few blog posts. Here is his first blog for the year. Pop by and leave a comment suggesting he blog more. Then it won’t just be me nagging him!
- Awesome pics in this blog from Scott from Rolling in the D. He hacked his Dexcom and this is what it looks like on the inside!
- Why do we need online communities? Anna from Glu gives some reasons here. And she’s right on every count!
- Also from Anna, this profoundly moving and brave post about her recent pregnancy loss. These stories need to be told. Thank you, Anna, for sharing yours. I am so, so sorry for your loss.
- This one is not a blog post, but a podcast. Stacey Simms produces some awesome podcasts over at Diabetes Connections. Do check them out!
Finally, if you’re looking for some more diabetes blogs to read, healthcare social media guru, Marie Ennis-O’Connor, has curated this list for you. There are 50 blogs to choose from. Get comfortable. Get reading!
Myths be gone
Team Novo Nordisk are doing awesome things to dispel myths about diabetes and address the issue of stigma. This latest video is terrific. Watch. And share. Share. Share.
Off to NOLA
It’s that time of year again. The American Diabetes Association Annual Meeting kicks off in New Orleans at the end of this week. I’ll be there, frantically tweeting.
I hit the road – well, air – tomorrow, so I’ll be out of touch for a bit as I embark on the nightmare transit. But I’ll be mainlining iced-coffee and beignets to keep awake and get in with it all.
Follow along at #2016ADA for the latest happenings in the world of diabetes.
New Orleans = Dr John. So here you go!
Twitter is a great source of discussion and yesterday this tweet from a diabetes consultant in the UK certainly did start an interesting conversation that had me thinking.
I should point out a couple of things before going any further. The tweet, asking if lack of guidance in social media is a concern, was in response to a tweet from someone else who shared a post from a Facebook page about insulin omission for weight loss. This is a very serious issue – one that I have written about here, (and elsewhere), and worked on a lot in the last decade or so.
Also, the consultant was absolutely not suggesting that social media is a ‘bad’ thing, and he is actually an advocate and user of online platforms, so this is not about the individual. It is about the issue at large.
Obviously, I am a huge fan of social media. Apart from finding online – and more broadly, peer – support an important part of my own personal diabetes management, I have built a significant part of my career extolling the benefits of online connections and the value of sourcing information and support from others living with diabetes.
The changing landscape of diabetes information and support over the last ten or so years has been significant. With more and more available online, and more and more people being online, there has been a real shift from healthcare professionals being the keepers of information and deciding what people with diabetes SHOULD know to a more egalitarian framework from which to source what we need.
While some may believe this to be the end of civilisation as we know it, (dramatic, I know), I consider this change terrific, because instead of having very controlled and conservative information on offer, there is now a veritable smorgasbord of material – and knowledge – from which consumers can pick and choose. Personally – I love being able to do that. Hearing personal experiences and picking up tips and tricks about day-to-day life with diabetes contribute to me making decisions about how to manage my own condition.
One of the suggestions frequently made about how to safely use SoMe is for it to be better moderated. My argument is that the power and value of SoMe platforms is that it is not moderated. Being free to share my ideas and experiences without fear (or perhaps care?) of judgement is not only useful, but also cathartic. And getting feedback from my peers often provides a different lens through which I can view a situation. Much of what I have learnt would not be found in the pages of a textbook, or offered in the office of a HCP. And that’s fine – there are other very valuable and important considerations that are shared in that context.
The idea of moderating online support – or any peer support, actually – is about control. It can be packaged up into a nice parcel of ‘protecting’ the person seeking the information, but that is not only patronising, but also incredibly demeaning. There is enough of that going on in more traditional settings – peer support is where there is freedom from that control – and a freedom to explore different ideas.
For me, peer support has always been about finding my tribe and learning from them. It has been about finding a source of sustenance and care that makes me feel better about my situation. It’s never been about replacing or substituting what I get from my HCPs.
So what is the role of HCPs in our support space? My belief is that it is a place for them to learn. There are times that it may be appropriate – and even encouraged – for HCPs to step in and share. On Facebook, one of Australia’s leading CDEs frequently comments and adds to conversations in closed diabetes groups. Her professional advice is always spot on – never judgemental – and her personal perspective (she has diabetes herself) shows just how it is possible to blend the ‘What-I’m-told-I-should-do’ with the ‘And-this-is-what-works-in-real-life’.
But not everyone who wants to be involved in this space has diabetes, nor should we expect them to. But I think for me, I have a very clear understanding of online and peer support works – and what everyone’s role is. When this works well, it works because it is being led by PWD; they (we!) are the ones driving the discussion and the focus. It’s not dangerous. We don’t need guidance. Because it is our space and we own it.
What peer support means to me,
With my most sincerest apologies to Neil Gaiman, this is gentle reminder that I really needed today. Happy Wednesday, everyone.
Recently, I heard myself saying to a friend with diabetes that she really didn’t need to – and shouldn’t – apologise for diabetes, specifically, for needing to stop to check her BGL while we were mid-conversation.
‘Don’t apologise,’ I said to her. ‘It’s just part and parcel of diabetes.’
And then, I heard how often I do it.
‘Sorry – I just need to treat this low.’
‘Sorry, darling. Would you mind just grabbing me a juice box from over there?’
‘Sorry – I had a lousy night with crap high BGLs and hardly slept. Would you mind repeating what you said? I missed it. Sorry.’
‘Sorry – my pump is wailing at me. Let me just see what it wants.’
‘Sorry – my CGM is alarming. I need to calibrate…hang on a sec…’
‘Damn. I’m out of insulin. Sorry. I just need to refill my pump.’
‘Sorry for munching on these glucose tabs. I’m okay – just trying to ward of a low.’
‘Sorry. My brain is foggy! I think I might be low….’
Sorry. Sorry. Sorry. Sorry. Sorry. Sorry. Sorry. Sorry…
Why am I apologising for my messed up beta cells? I didn’t destroy them. (Actually – technically I guess that’s not true. My own body did kill them off. But it wasn’t deliberate on my part…This is all getting rather confusing, so let’s just agree that it’s not my fault that I have diabetes.)
Why do I say sorry for having to treat or manage or address the health condition I live with all day, every day, and do things that I only do to keep me well…and alive?
I’m not alone here. Many others do the same. I’ve sat in rooms with friends having nasty lows and heard them apologise over and over again as they treat and will their glucose levels to rise. We do it amongst ‘friends’ – others from our pancreatically challenged tribe who get it better than anyone else, and we do it with those who are not living with it.
When I apologise for my diabetes, I am making it sound like I have done something wrong – intentionally or accidentally. And that is never the case. I’ve never intentionally been low or high. And even if it could be considered an accident or something I could have prevented – perhaps over- or under-bolusing or forgetting to refill my reservoir before leaving home – it was never done with the aim of being disruptive to others. Or myself for that matter.
What I am also doing is apologising for diabetes inconveniencing others. And I am also saying it is something shameful. But I can’t do anything about having diabetes. And it is not shameful. I am certainly not ashamed of having diabetes.
I wonder if it is a case of good manners going too far. Manners are very important to me – I have instilled this in our kidlet who is frequently complimented for her beautiful manners. But manners are about courtesy and respect – and that respect is for yourself as much as others. I think I am actually being quite disrespectful to myself when I apologise for having to ‘do diabetes’.
My body, which really doesn’t like itself, is not a reason for me to say sorry. I do enough managing diabetes without having to feel the need to repent all the time. So I’m not saying sorry anymore. Well, I’m going to try, anyway!
The other night, I drove through the pouring rain to Geelong to speak at an information session for healthcare professionals about CGM technology. The event was run by AMSL, the distributors of Dexcom here in Australia (the disclosure song and dance can be found at the end of this post).
I sat on the panel with Dr Natalie Harrison, a terrific local endocrinologist (oh – how’s THIS for a bit of disclosure – we went to kindergarten together!!) and paediatrician and diabetes technology champion, Dr Peter Goss. I was there to bring the overall IQ of the panel down, share the ‘living with CGM’ story and be the point of difference between the glossy information presented by the CGM company.
On the left – the numbers of all readings in the glossy propaganda (it’s about 6.2 in our language). On the right – real life.
Both presentations by the doctors on the panel were enlightening. They clearly showed how CGM could be used in a number of different scenarios. The thing I particularly enjoyed was how both speakers are using this tech as tools of empowerment for the adult or child with diabetes – not for any other reason. Both repeatedly said that although in most of the cases they presented, there was a reduction in HbA1c, the biggest benefits to the PWD was improved quality of life. (I may have done a little fist pump each time they mentioned that!)
Examples included shift workers, tradies working on construction sights, exercise nuts, kids, adults, teens – demonstrating a terrific cross section of the diabetes community who may – and indeed have – benefitted from the technology. There was also a discussion about how CGM is useful in specific target groups and situations, with a considerable time of the discussion being about low carb diets and CGM. (And can I say just how refreshing it was to have this discussed with little judgement from the speakers. Too often LCHF or just LC is dismissed by healthcare professionals without any willingness to accept that there are many people who are using this as part of their diabetes management and achieving excellent results.)
Dr Goss also mentioned how useful CGM tech can be for families where ‘dead in bed’ is a real concern because it can show families just how stable glucose levels usually are overnight, and therefore may help reduce a lot of the anxiety parents feel. (There was also a discussion about the significant emotion around DIB and how it is frequently overplayed. This is really important because while one person dying from DIB is one person too many, it is thankfully a very, very rare occurrence (as shown in all local and international literature). The fear and the risks need to be in perspective and unfortunately, that is not the case at all times, and the anxiety it is causing is unnecessary.)
After the official, smart speakers finished, I stood up. At this stage, the AV equipment had called it a night, so I put aside the few slides I had developed, and shared a few things.
I spoke about why I love this technology and why I choose to use it pretty much all the time. But I also spoke about its limitations – specifically the emotional and psychological barriers that are of concern. I raised the point that reluctance to use CGM by PWD could be for myriad reasons and to never assume what that reason is (this was in direct response to the suggestion from one of the speakers that often PWD refusing to wear CGM have something to hide). I suggested that for some, it is a huge step to agree to wear something attached to one’s body all the time – something that provides a lot of confronting information, beeps, alarms and can be downright annoying. This is not a small consideration – it is big!
I also spoke about the necessity to customise just how PWD use the technology. I explained how I turn alerts on and off, depending on how engaged I am with my care. I could see that didn’t sit well with everyone so I tried to explain that being able to deal with – and respond to – a couple of alerts, is better than having the all on and doing nothing because it is too overwhelming. Or simply not wearing the technology at all.
And I also spoke about how what I do to make CGM work for me, even if it is against the direct advice of the company – and HCPs. Case in point, my sensor and transmitter are on my arm at the moment. I have found that recently, I get better readings and the sensors last longer if that’s where I site them. I also leave the sensors in for a lot longer than the suggested 7 days. (Peter Goss concurred with both those statements saying that most of the children and adolescents he sees prefer to wear sensors on the upper arm. And there was a bit of a ‘who leaves their sensor in the longest’ discussion, with Dr Goss sharing that the record in his clinic is 26 days. I did disclose that while I have a mental block about going beyond 21 days, I know people who have doubled that!)
This is why it is important to hear directly from people who use the technology. While both doctors shared case studies, the focus was really on how CGM helped smooth out glucose lines. And of course that’s important. But equally important is the way we manage the technology in our life, because if we can’t find a way to get it to work for us, we won’t wear it. After the presentations, a couple of HCPs thanked me for being there and said that I had raised a number of things that they just had not considered before – all things that are usually missed when a PWD is not part of the discussion.
And it served as a reminder again that even though it is terrific to have people with diabetes represented in some ways in presentations at these sorts of events (or conferences, meetings etc.), the only way to hear the real story is to hear it from someone living it.
Thanks to AMSL for inviting me to speak, but more so, for putting a person with diabetes up there on the panel. We belong there.
Disclosure
I was invited to speak at this event by AMSL Diabetes, Australian importers and distributors of Animas and Dexcom. I was provided with product to speak at this event…. The team from AMSL did not hear or see my presetantio prior to the evening and the only direction I was given was to share my experience of using Dexcom. Which I did – the good, the bad and the ugly.
(For the record, although not really relevant, but I’m disclosing the crap out of everything here, I also use an Animas pump. That was wholly paid for by my private insurance company whose premiums I pay each fortnight through clenched fists of frustration as their premiums continue to rise. I also pay for the ongoing consumables needed to drive said pump.)
In one of my #DBlogWeek posts last week, I wrote that for the sake of my own mental health, I have learnt to not compare myself with others.
I was thinking of this the other day when I was involved in a conversation with a woman newly diagnosed with diabetes. She told me that she was really upset at the response from a close family member who, when told about the diagnosis and how distressed she was, responded with ‘It could be worse. At least it’s not cancer.’
I’ve had that said to me. Several times. And it is one of the most offensive things I have heard. I don’t really know how to respond to it, because it’s true, I don’t have cancer. But I do have diabetes and that is pretty bloody horrible sometimes. (For the record, I equally dislike the idea of responding with ‘At least it’s not cancer. There is a chance of remission with cancer; type 1 is for life…’)
I get just as annoyed when it happens in our community. ‘At least it’s not type 1,’ is something I have heard said to people with type 2, diminishing the challenges they may face.
When I was anxious about my impending cataract surgery a few years ago, I was told ‘It’s nothing. At least you don’t have to have laser or have your eyeball injected.” Again, that’s true. But I was still terrified and had every right to be.
When discussing a nasty hypo ‘At least you didn’t lose consciousness and wake up to a roomful of paramedics.’ Sure, I remained conscious throughout the low I had last week. But I needed help to treat it and it happened in front of my kid. She was scared which really upsets me and makes me feel guilty.
When our experiences are belittled or minimised, it means we may stop sharing them. No one wants to be told they are being a drama queen and that it could always be worse. Of course it could be worse, but that doesn’t mean what you are dealing with doesn’t suck.
I have had diabetes for 18 years now. I have not had to deal with debilitating complications. I have not had to spend weeks in hospital because of my diabetes. But does that mean that my fears and concerns and anxieties are any less relevant than someone whose experiences are different?
And that’s why you will never hear me say to someone newly diagnosed ‘At least you have just been diagnosed. Just wait until you have had diabetes as long as me and <this or that> happens,’ because everyone’s experience is different and that newly diagnosed person may have their own concerns at that particular time. Or not. Which is also fine.
I had a healthcare professional once tell me that at least I didn’t have diabetes ‘too terribly’, because I worked, had a child and travelled. It was one of those (incredibly rare) moments where I was stunned into silence. I was torn between wanting to say ‘Well, surely that makes what I’ve achieved all the more incredible‘ and stabbing her with a fork. I said (and did) nothing.
There is no ‘at least...’ when it comes to diabetes. There is no discussion about how it ‘could be worse’. Because the truth is, it could be a whole lot better. I could NOT have diabetes.
I have now been wearing the Freestyle Libre flash monitor for ten days and have some initial thoughts to share.
I wasn’t sure what to think of the Libre before using it. I had heard stories of people absolutely loving it and other tales of people not really being all that impressed. I was certainly excited to try it, as I am with any new technology and was interested to see how my experience compared with friends who had already had a go.
I went in with a very open mind, albeit a mind that has been completely and utterly won over by Dexcom and CGM technology.
Overall, I love this device and can see why, where and how it would be brilliant for some people and now, after a week and a half, have a better idea of where it fits in my diabetes management.
The Good
The insertion was simple. I could go into a whole lot of detail about how it works and what it looks like, but a very clever young lady has made a very cool video of it and she is far cuter than me. You can see it at the end of today’s post. (The caveat to this is that Ms Pumplette in the video is under 18 years and, at this stage, the Libre only has TGA approval (i.e. in Australia) for adults.)
I will just add that it was completely painless for me. As in: Did. Not. Feel. It.
The device is discreet. I have mine attached just under my upper arm, so it is completely hidden, even when wearing a short-sleeved shirt. This placement also means less likelihood of ripping it off on a doorframe or similar. The profile of the Libre sensor is fabulous – tiny, flat and completely unobtrusive. (But if you would like to pimp it, of course there is a cottage industry making lovely patches to stick either over the top of the white disc, or to augment the tape around it.)
I have found the device to be incredibly accurate – when compared with both my BGL meter and Dex. We were warned that new sensors could take up to 24 hours to start to read accurately, however I found the new Libre sensor to sync with my devices as soon as the 60 minute warm up period was over.
Obviously, one of the biggest selling points of the Libre is its convenience and there is a lot to be said for the incredible ease of just scanning a device over my arm rather than doing a BGL check.
I had a couple of Dex-less days and found that the Libre was brilliant, especially considering that within 2 hours of my last Dex sensor dying, I had a horrid hypo that left me feeling vulnerable and scared and more than a little fragile. I had the Libre scanner in my back pocket (replacing my iPhone as the reader for my Dex) and was scanning every 30 minutes or so which was very reassuring.
The less good (I am reluctant to use the word bad here)
The cost is going to prove prohibitive, with sensors coming in at $95 each, which is above both Medtronic and Dex sensors. Being factory set, there is no possibility of extending the 14-day sensor-life. I’ve not used Medtronic sensors for a while now, but from what I read, most people get a max of 14 days out of theirs. I get about 21 days from a Dex sensor – at which point I rip it out because I start to get a little grossed-out. (But I do know people routinely leave theirs in for longer.)
The reader/scanner for the Libre is $95 and is rechargeable. This is certainly a point of difference when comparing with CGM transmitters, which have a battery life of either 3 or 6 months (depending on the product you use), and cost significantly more. (Add a CGM receiver to the cost and the price goes up a whole lot more.) This is where the affordability of the Libre runs rings around the CGM devices.
I just want to quietly flag supply issues which I hope will not be a problem here in Australia. The Libre is not quite available for purchase here in Australia, but is only weeks away. At DX2Sydney, I asked if there are any supply concerns similar to those that plagued the product’s release in the UK and EU and was assured that there really should not be here in Australia. I suspect that part of the reason the launch was not immediately after TGA approval was to make sure that there would be product available.
The verdict for me
So, is this a product I would continue to use? Well, yes. And no.
I really like and I trust the Libre. Accuracy for me is THE most important measure when it comes to any diabetes device (whether that be measuring my glucose levels or delivering insulin). From that perspective, I found this to be a winner.
But the lack of alarms is a problem for me. As someone with impaired hypo awareness, being able to catch those lows is important and I can’t do that without a system that warms me. The Libre doesn’t do that.
HOWEVER – this is not a CGM device and therefore, I understand I need to frame it in that way. This is a replacement for BG monitoring and BG monitors do not alarm and I have no expectation that it will. Despite being a sensor, the Libre is meant a substitute for finger pricks and meters. Currently, I check my BG twice a day to calibrate my Dex. If I was not wearing CGM, I would absolutely use Libre over a BGL meter any day.
Pumplette talks Libre
DISCLOSURE (again!!)
DX2Sydney was being coordinated and run by Abbott Diabetes Care. The costs for me to attend the two day event (travel, accommodation, meals and transfers) were covered by Abbott. All attendees received Freestyle Libre products (one scanner and two sensors) so we could trial the new device.
There was no expectation that I would write about the event or my thoughts of the device. Abbott may have paid for me to attend, but they did not pay for my words on this blog, social media activity or anywhere else. I like to share, so that’s why I decided to write about my experience.
It’s day 2 of Diabetes Blog Week, and the silver lining of being awake at 5am this morning was that I managed to catch up on most of the posts from day 1. This week comes from Karen Graffeo who, as she commented on my blog yesterday, I’ve not met. But we will be remedying that very shortly so I can hug her and say thanks for this. And make her buy me a coffee to help manage the sleep I’ve lost each year (and am yet to make up!) since taking part in #DBlogWeek.
Today’s prompt: We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?
Just this morning on Twitter, I was having a conversation with a few people and eventually I found myself commenting on the emotional side of diabetes. The discussion was specifically relating to someone who had recently started using an insulin pump and I made a comment about how the learning curve could be steep and to take it easy.
Someone jumped in and said that he found the learning curve to not be steep at all (which is great and also highlights the different ways different people respond to diabetes). He commented that he thought it was pretty straight forward and that most people should be able to follow some basic principles – such as timing of glucose checks and understanding what happens around food and insulin (a movable feast as far as I am concern – there is no understanding, just watching with confusion at why something worked yesterday but not today….).
This may be true. There probably are some principles that could be consistent for most people. However, this was not addressing everything I was referring to which may contribute to the gradient of that learning curve.
Matters such as insulin dosing, timing of glucose checks and counting carbs are, just like working out which buttons to push on the new device, technical. But I believe this is certainly not the only side to diabetes.
I pointed out that it was more than just the technical side to a pump start and commented as such, adding ‘…emotional concerns of ‘attachment’ can be difficult for some, explaining in my next tweet that the term attachment was referring to being connected to something 24/7. (This is something that almost everyone I have ever spoken to has mentioned as a real barrier to starting on a pump or other wearable device – the idea of a constant, attached to the body reminder of diabetes. It was even a discussion last Friday at #DX2Sydney.)
Too often, some forget that diabetes is not about only about operational matters. The equation of ‘you eat, you take insulin to cover the food and then you are all good to go’ does not hold true. In the case of technology it is not, ‘you learn to press buttons and then you are fine.’ Just as I am much more than my diabetes, my diabetes is so much more than food, medication and devices.
When people ask me what I find the most difficult about living with diabetes, I am able to answer without hesitation. For me it is a combination of the relentlessness of the condition alongside the way in permeates all aspects of my life. It is particularly disturbing and distressing for me when it impacts my family who shouldn’t have to deal with diabetes.
I don’t have the answers or know how to fix these troubles. But I do know that there are a few things that help.
- I have learnt to be kind to myself.
- I have learnt to not compare myself with anyone else.
- I have learnt that this too will pass – even the darkest diabetes moments have had light somewhere.
- I have learnt to rely on the people around me who love and support me.
- I have learnt that the moment that I get complacent and think I have this diabetes thing sorted, I absolutely don’t.
- I have learnt that looking to the DOC provides me with a million things I’ve not thought of, and one of those things may work for me today.
- I have learnt that sometimes I need to draw a line in the sand, call it a day, and admit that diabetes is winning right now. But that doesn’t mean it will tomorrow.
- I have learnt that when all else fails, the things that make me feel best are a hug from Aaron and the kidlet, a message to one of my far away diabetes friends, a perfectly made coffee or a glass of Prosecco, and something to take my mind off diabetes.
- I have learnt that even though I have really had some dark emotional days with diabetes, I get up and do it again tomorrow. Because that is the only option.
