Catching Up to The Real World.

This week, my diabetes social media feeds have been flooded with posts on one of my favourite topics.

Amputations.

It’s not something I like to think about. One minute I am flooded with guilt, wondering if I am doing enough to manage my blood sugar levels. The next minute, I try to put those scary thoughts into a box at the back of my mind and tell myself they’ll never come to fruition.

I still don’t believe that fear is a motivator for health. Nor did I feel that amputations were a suitable theme for 2016 National Diabetes Week. However, I really am trying to evolve and think about the underlying message rather than to simply react.

I watched some of the news coverage that arose from the campaign, highlighting the 4,400 diabetes related amputations that occur each year. Encouragingly, the campaign has been framed to highlight the 85% of these that are preventable with earlier detection and treatment. I was presented with case studies of individuals who had brighter futures thanks to limbs that had been saved. I was also encouraged to check my feet. (Sidenote: I probably am overdue for my annual checkup this year).

Yet watching these videos, there was still one question on the back of my mind that hadn’t been answered.

What should I be doing today to prevent these complications from ever happening? 

Going by some of the comments to these social media posts, it seems that I am not alone.

It would be naive to think that my diabetes management would be where it is today if I were solely following the advice of my doctor. If I were listening solely to the advice of my diabetes healthcare professionals, a great deal of my reality today would not exist.

I would not be on an insulin pump, because my endo deemed a hba1c around the 7% mark satisfactory. I would not be supported by a diabetes educator, because I was deemed competent enough to self manage on my own five or so years ago. I would not be pre bolusing insulin prior to eating, because I was told that insulin could be taken at mealtimes. I would only be checking my blood sugar level five times a day, because that diabetes educator once remarked that you test your blood sugar a lot! And because I was once made to feel guilty at the Pharmacy for wanting to purchase more. 

I probably wouldn’t be writing this blog or connecting with other peers online, because my endo once gave me a look and remarked I can only imagine [what you’re doing on the internet]. There’s a good chance that I wouldn’t have any peer support in person either, which has contributed greatly to my physical and mental wellbeing. I wouldn’t have any of the knowledge that I have today, and I would be left feeling hopeless each time my GP comments on my increased hba1c and the fact that you need to get your sugar diabetes down. Sugar diabetes, I kid you not.

Look, I am definitely not going to suggest that anyone reading this abandon their healthcare professional. Nor that Diabetes Australia (or anybody else) should start preaching to people on how to manage their diabetes.

However, I do feel that some of the guidelines we are given are both vague and outdated. We could be doing a far better job of embracing the many different options and choices we have in management strategies. We could be doing a far better job of pointing people in the right direction, and encouraging people to find management strategies that best suit them.

If diabetes organisations and healthcare professionals don’t wish to catch up to what people with diabetes are doing in the real world, then they put themselves at risk of being left behind.

Here is one of the campaign materials, and you can check out more on Diabetes Australia’s Facebook page here.

Relentlessness.

There are days where I find myself exhaling loudly out of exhaustion. My alarm wakes me for work at 6.30am, while I want nothing more than to close my eyes and go back to sleep. I find myself unable to muster any enthusiasm for the new day ahead of me, nor for the people around me. I find myself walking around with a long face, and an expression that will put a damper on everything and everyone around me. There are days where I feel like coffee, toast and swear words are the bane of my existence. Then, there’s the inevitable feeling of limping toward the finish line on a Friday afternoon.

Over the years, I’ve told myself that I was burned out. Or that I wasn’t eating the right kinds of foods. That I was overworked, and trying to juggle too many different things. I wondered if it was the exhausting nature of rollercoaster blood glucose levels. Or the mixed bag of emotions that came from dealing with an unpredictable condition that was downright isolating.

Time has gone by, however, and I think it’s safe to say that I’ve addressed each of these issues to the best of my ability. The variability in my glucose levels are far less significant than they once were. I am more connected, supported and engaged in my management. I have a far better understanding of a condition that even at the best of times makes no sense. I am far more conscious of taking time out for myself and not burning out.

But I’d be lying if I said that those feelings don’t linger, like flames from a fire that simply will not go out. There’s only one rational explanation that I keep coming back to.

Diabetes.

Diabetes is relentless. The physical and mental effort required to keep those flames at bay is huge. Throw in a full time job, freelance writing, friends, family and time out for myself, all while working towards financial independence, a career and other life goals, and it’s no surprise that at times I feel like I’m only further fanning those flames.

Diabetes is no easy feat.

When I look on in envy at the person with a spring in their step while I’m limping it toward the finish line of a Friday afternoon after a challenging week, I remind myself that most people around me don’t have to deal with the relentless diabetes demands that I do.

It Feels Like…

It feels like not setting your 1am alarm that could be the difference between waking with a blood sugar level of 5 or 10.

It feels like choosing to shell out money on ham and cheese croissants, tuna sushi, Kit Kat Chunky bars and Jesters chips instead of bringing your lunch from home.

It feels like failing to wash your grubby hands before the prick of a finger, knowing that the number will be a shit one regardless.

It feels like exhaling loudly, and sighing out of exhaustion from the mundane diabetes tasks that make life feel that much harder.

It feels like telling your meter to eff off when it screams ‘low batteries’ at you.

It feels like telling your meter to eff off a little louder when it still screams ‘low batteries’ at you.

It feels like failure after discovering your third infusion site this week that hasn’t lasted it’s full three day life.

It feels like telling your insulin pump to shut the hell up when it begins blaring that there are less than 10 units of insulin left in the cartridge at the dinner table.

It feels like trying to manually poke your finger with a lancet after you’ve left your lancing device at home.

It feels like not being bothered to weigh and carb count your dinner tonight, instead opting for a good old fashioned guesstimate dose of insulin.

It feels like checking your blood sugar, and not really caring that your levels are higher than what you’d normally accept.

It feels like anger when your new FreeStyle Libre sensor starts bleeding horribly after application, when you had put it on hoping for somewhat of a break.

It feels like frantically power walking home with a plummeting blood sugar, because you forgot to bring your glucose tablets with you on your walk.

It feels like crawling out of bed with a heavy head, still feeling exhausted after a solid 10 hours rest.

It feels like silent pleas for the coffee machine not to get choked up, because you simply can’t handle yet another failure this early in the morning.

It feels like…a bout of diabetes burnout.

(and a whole heap of bad luck).

Choice.

I was about to settle in front of the TV on Thursday night (which I’ve been doing a lot of lately hence the blog break), when Twitter exploded with the news of Animas discontinuing the sale of insulin pumps in the US and Canada. Customers with in-warranty pumps will be referred to Medtronic for consumables, before eventually having to choose a different brand of pump.

I knew that parent company Johnson and Johnson had been evaluating their insulin pump business for some time. I also knew that there weren’t really any exciting enhancements in the pipeline for the Animas Vibe, compared to some of the other insulin pump players in the market. Yet the news of Animas shutting up shop was still a real shock to the system.

So what does this mean for Australia? For the time being it’s business as normal, with the delivery of insulin pumps and consumables unaffected. AMSL Diabetes, distributor of the Animas Vibe insulin pump here in Australia, issued a brief statement via Facebook on Friday.

“Animas Corporation, a division of Johnson & Johnson, has announced overnight their plans to discontinue the manufacture and sale of the Animas Vibe insulin pump and exit out of the insulin pump business in the USA and Canada.

We feel that it is important that you understand that this does not affect your supply of consumables, technical support or after sales service. AMSL Diabetes is a distributor for Animas and we are continuing business as usual.”

The press release issued, however, indicates Johnson and Johnson’s intention to eventually exit the insulin pump business globally subject to consultation and timing.

When Animas does exit the market here in Australia, that leaves us with Cellnovo, Medtronic and Roche. Roche also ceased the sale of Accu Chek insulin pumps in the US earlier this year, triggering the following response from one of my contacts at Roche Diabetes Care Australia:

“I was shocked to see Animas’ announcement yesterday. Anything that reduces choice in insulin pump therapy for people is never positive.

Looking at peoples responses on social media I see that a lot of people think Medtronic and, to a lesser extent, Cellnovo are the only options left on the Australian market if Animas should ever exit here. There also seems to be a perception that, because It is no longer available in the US, Accu-Chek Combo been withdrawn globally. This perception is not accurate.

Accu-Chek Combo is manufactured in Europe and continues to be available for people with diabetes in many countries including Australia. Please be assured that Roche Diabetes Care is here to serve people needing insulin pump therapy both now and longer term both with our current tried and trusted Combo and with our exciting and innovative pipeline of products.”

While Animas have signalled their intent to (eventually) exit the insulin pump market globally, Roche have not signalled any intent of exit outside of the US. I hope, for the sake of choice, that they don’t.

I can’t say that I’ve ever felt super excited about my pump. I mean, it does it’s job. Quite nicely, I might add. However it wasn’t until I was wondering around the exhibition hall at ADS-ADEA last month that I began to appreciate why I use what I use. Looking at some of the other options on show that weren’t for me, really made me appreciate having a choice. 

I really, really don’t like seeing Medtronic eating up the market in the US, and I really do hope that the affected Animas and Roche customers will choose a replacement pump option that best suits their needs. One brand of pump should never be the only option for people with diabetes.

With Animas on the way out, Tandem’s t-slim Dexcom integrated touch screen pump would surely be a natural successor to the Vibe for Aussie distributor AMSL diabetes.

Let’s make it happen sometime before my current warranty expires in 2020…

(Choice!)