Hard Reset.
#MakeDiabetesVisible.
Author: Frank
What It Feels Like to Live With Diabetes
We’re almost in the middle of diabetes month, and we’re supposed to be raising awareness of diabetes, so today I’m pulling this very awareness-ey post out of the archives.
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It feels incredibly permanent. It’s only been with me for the past eight and a half years, and yet I struggle to remember a life without it.
It feels incredibly monotonous. Checking my blood sugar. Weighing my lunch on the kitchen scales. Looking up carb counts on my iPhone. Pulling out my pump to give an insulin dose. Checking my blood sugar again. Pulling out my pump to glance at the insulin on board feature. Deliberating over a correction dose. It’s pretty hard to muster the enthusiasm to do the same thing over and over each day.
It feels extremely isolating. The twinges of jealousy that surface as I watch others my age who can live like there’s no tomorrow. Wondering if anyone around me can truly comprehend the burden of my condition.
It feels incredibly frustrating. One day can be perfect, while the next can be a complete trainwreck. I can do exactly the same thing that I did yesterday, and get a completely different result today. I can make a decision that makes complete sense on paper, and then stare at the result in disbelief.
It feels utterly exhausting. The physical and mental effort that this condition demands is huge, that there are days where I am left struggling to give my 100% to everything else.
It feels incredibly worrisome. Pushing thoughts to the back of my mind about what my future will look like. Wondering if I am doing enough today to ensure that I will live a healthy and complication free life.
It feels painful. Stabbing the tips of my already blistered fingers. Sticking a gigantic needle into my stomach to insert a new infusion site. Feeling the sting of insulin going into an overused area of skin tissue.
It feels ever so emotional. The journey from high to low and everything inbetween can be an emotional rollercoaster. It’s so hard not to let the numbers get to me.
It feels immensely guilt ridden. Pangs of guilt accompany every single decision I make that has an undesired outcome on my blood sugar.
It feels extremely disruptive. It doesn’t care if I’m trying to work, if I’m trying to sleep, or if I’m trying to chill on the weekend.
It feels incredibly close. Finding my tribe, who I can turn to when I’m having a shit day. Finding folks in the Diabetes Online Community, who I can reach out to at 3 in the morning while I’m waiting out a low blood sugar. Being able to hear the two most powerful words in the english language. ‘Me too.’ Making my world feel that much smaller.
It feels experienced. Every passing day arms me with that little bit more knowledge, that leaves me better equipped to deal with this condition. Like finding another piece in an incredibly difficult jigsaw puzzle.
It feels confident. Confidence to speak up for what I want from my healthcare professionals. Being my own advocate. Sharing what I feel passionate about. Finding my comfort zone when my condition has thrust me far from it.
It feels grateful. Grateful that thanks to modern medicine, tools and technology, my life has a far brighter outlook than it did a century ago.
It feels lucky. Lucky that I live in a country where insulin, test strips, pump consumables and healthcare won’t send me broke. That I have a supportive family and a job which affords me these privileges.
It feels incredibly heartbreaking. Heartbreaking that in this day and age, people are still can’t access the basic tools and healthcare that they need to survive. Heartbreaking that these tools of survival are tied to income and extremely costly insurance premiums. Heartbreaking that without the subsidies I am afforded, these tools are extremely costly. Heartbreaking that people are still dying in some parts of the world because they cannot get their hands on the luxuries that I take for granted.
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Review: Contour Next One Blood Glucose Meter
Back in August, Ascensia Diabetes Care convened a group of diabetes bloggers in Adelaide for the launch of their new blood glucose meter, the Contour Next One. You can read more about what was discussed during the actual event in this post.
Blood glucose meter accuracy isn’t something I’ve really considered prior to the past two or three years where I’ve taken a more active role in managing my blood sugars. When I was first diagnosed, I just accepted that a blood glucose meter was a blood glucose meter. Since connecting to other people with diabetes, and the emergence of new choices, I’ve come to realise that I can actually choose the devices that best suit my needs.
I was most impressed by the 8-ish percent accuracy that the Contour Next One boasted, which even beats out Roche’s AccuChek Guide which is my meter of choice. I’ve been using it on and off over the past couple of weeks, and I have to say that overall I am impressed.
I really like the sleek design of the meter. There’s a strip port light for testing in the dark, which is a little tricky to find as it does not automatically illuminate when you insert a strip. You’ll need to press your menu button twice before inserting your test strip. Readings are colour coded as red for ‘low,’ green for ‘in range’ and yellow for ‘high.’ The port light will also flash with the corresponding colour to reflect your blood sugar if you wish. I found that annoying and turned it off.
Like the Guide, the Contour will wirelessly transmit blood glucose readings from your meter to the Contour Diabetes app on your phone. It’s a really visually pleasing experience, and my readings seem to sync to the app with more ease than the Guide does.
My favourite feature is being able to see all of my readings plotted on a 24 hour graph, which is the next best thing to having a FreeStyle Libre or CGM. The colour markers are handy in this context. It will also produce time period averages, which can also be further classified (before meal, after meal, exercise etc.) if you place a ‘marker’ on each of your readings.
So far, the Contour also wins out over AccuChek on battery life. Since August, I’ve probably gone through four or five boxes of test strips using the same meter and batteries that came with it. I can’t give you an exact statistic, but it does feel like I’m constantly seeing the low battery icon pop up on my Guide.
Another thing I learned at the summit is that apparently I shouldn’t be paying for meter batteries, much to the amusement of others in the room. Ascensia have explicitly stated that replacement batteries are included with the meter, and can be ordered online. Apparently the same applies to most other brands of blood glucose meters, too!
The test strips come in capped vials, which do seem quite bulky after using AccuChek’s impressive spillproof vials. The meter does give you more time to apply more blood to the strip if your sample is inadequate. I’ve only just pulled out my Guide today and have already been met with a few pesky strip fill errors, making me appreciate this feature even more.
The lancing device also feels very ordinary, albeit with multicoloured lancets.
I have to admit I haven’t purposefully done a lot of testing in regards to the accuracy, but the few times that I have it’s come up very close to the Guide. I’ve also tested on a few dusty fingers at work and the results have been very trustworthy. The readings match with how I am feeling, as well.
One area where the Contour Next One would really excel is by adding a bolus calculator to the app. I feel like I’m flogging a dead horse here in repeatedly saying that diabetes apps have no value for me without one!
Ascensia also expressed their vision of supporting interconnected diabetes management systems, and another area where their meter would excel is in capabilities to transmit blood glucose readings into insulin pumps.
All in all, it’s a really neat meter and I will most likely continue to use it. Ascensia are also offering free meters through their website here, if you wish to try it for yourself.
Disclosures: Ascensia provided me with a Contour Next One meter at the Diabetes Social Media Summit I attended in August. I also accepted hospitalities during the event, details which can be found in this post. I have not been asked or paid to write this blog, and all thoughts expressed here are my own.
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Lesson Learned: Don’t Overfill Your t:slim Cartridges
Yesterday morning after breakfast, after I could no longer ignore the vibrations coming from the needy insulin pump in my pocket, I swapped out the cartridge on my t:slim.
I slowly drew insulin from my penfill cartridge into the syringe, filling it all the way up to its 3ml capacity. After tapping and priming the air bubbles from my syringe, I stuck the needle into my black t:slim cartridge and began to slowly inject the insulin in.
As I tried to continue pushing that last bit of insulin from my syringe into the cartridge, I was met with a little resistance. The cartridge must have been nearing full.
I knew I should have stopped then and there. Except that I didn’t.
After pushing a little more in, I pulled the syringe out and slid the cartridge into place on my pump. I was feeling a little hesitant, but figured I’d be able to pick up on anything weird soon enough.
I had lunch a little later on, and found myself at 10.6 when I checked my blood sugar afterwards. Which felt plausible, given that I had also eaten ice cream with my lunch. I can never seem to bolus for ice cream quite right.
After some correction insulin, a walk and nothing more than a coffee that afternoon, I was still lingering around the 10 mark.
After loads of corrections that evening, I don’t know why I didn’t just replace my insulin cartridge before I went to bed.
I guess a part of me was seeing the 200+ units of insulin in the pump, and didn’t want to be wasteful by throwing it away if there was actually nothing wrong.
After a full correction at bedtime that had little effect by the time I woke up at 5.30am this morning, I hauled myself out of bed and made a dash to the fridge. I swapped out my cartridge for a fresh one, this time only filling to around the 2ml mark on my syringe.
Yes, Frank was told to put less insulin into his cartridges when he got set up on his t:slim a few weeks ago. But Frank also didn’t like to be wasteful and wanted to get his money’s worth from the cartridges that he paid for with his hard earned money. Frank also doesn’t like not being able to reuse these cartridges like could with his Animas pump.
Anyhow, lesson learned.
Don’t overfill your t:slim cartridges. It just feels like your insulin isn’t working.
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‘Dumbing Down’ Diabetes
So, how does it work?
The pump does two things. It continuously delivers a rate of insulin in the background to keep me stable. Then I also press a few buttons on the pump to deliver insulin every time I eat. The other end of this line just connects to a little piece of plastic that sits underneath my skin.
So, do they have to implant it?
No.
And you don’t need to use any needles?
No.
I definitely feel guilty of ‘dumbing down’ my diabetes when I’m trying to explain it to people who don’t have diabetes.
I’m more than happy with this approach. I don’t have to twist my tongue trying to explain the complexities of this freaking condition every time, and those on the receiving end will get my point more easily.
But I guess the one little flaw in this approach is that the people around me will never see just how many decisions go into managing my diabetes each and every day.
Nobody sees the fasting that I have done at all ends of the day in order to ‘test’ the rate of background insulin that the pump infuses into my body every three minutes. Nor all of the decision making that goes into adjusting those background rates of insulin to get them perfect. The same could be said if I were managing on needles.
Nobody sees me searching for the carb counts of different foods on my phone, weighing food items on kitchen scales and doing the maths to come up with a carb count for a meal so that I can tell my pump how much insulin to deliver.
Diabetes needs to be considered in almost every single activity that I undertake, and nobody sees just how heavily all of these decisions weigh on me. It’s hard to separate emotion from the numbers that show up on my blood glucose meter, given they’re a direct result of the decisions I’ve made. A ‘good’ number can totally validate the decision I’ve made, while a ‘bad’ number can make me feel guilty or a failure.
3,099 days with type 1 diabetes might feel remarkable, but the number of decisions I’ve had to make on my own in that time amounts to much, much more than any of these stats could ever show.
