Basal testing is a necessary evil of using an insulin pump.
After a week of rough blood sugar levels, I decided to start my second FreeStyle Libre sensor that I received at DX2 Sydney to help fine tune my insulin requirements while I’m at work.
Not only did I manage to get through a Monday morning without breakfast, without coffee, and without a banana, but I managed a fairly steady line all the way through.
Small victories.
Happy hump day!
A diagnosis with type 1 diabetes back in May 2010 changed my life.
I remember how awkward I felt around my new condition at the time. Carefully finding a spot on my stomach and willing up the courage to insert the needle and administer an insulin injection. Standing in the kitchen eating a white bread sandwich at bedtime, feeling uncomfortable as soon as someone walked in and saw me. The way I tried to carefully follow the very vague instructions I had been given upon my discharge from hospital – 20 units of Lantus at dinnertime, 5-10 units of Novorapid at meal times, and a white bread sandwich at bedtime to stop me from going low.
I remember how “different” I felt at the time. The reality that this condition would be around for the rest of my life was still sinking in. Nervously walking into diabetes clinic for the first time, and seeing other patients there reminded me that I was now a “diabetic” – something I felt very labelled by at the time.
It was there that I first met my diabetes educator, Gwen, a straight talking woman with plenty of diabetes knowledge and experience. My Mum was there with me at my appointments, and Gwen made her feel very much included as well. I’ll never forget her famous diagram of the mouth, the liver and the pancreas, as she demonstrated the role of a functioning pancreas when food entered the body. A diagram that she still uses to this very day.
In the months that followed, Gwen went on with helping me to fine tune my insulin doses, so that I wouldn’t need that white bread sandwich at bedtime. When she saw how complex and spontaneous my meals were, she taught me how to carb count. She always made herself available to me outside of appointments by phone and e-mail, despite how busy she was. When my first endocrinologist told me that I had very poor control, Gwen was the first to see the look of disappointment in my face. She was prepared to go and have a word with him, and she made sure that I didn’t see him again in future.
Gwen often reminded me that the first year was biggest hurdle to get through, in terms of education and clinic appointments. Her job was to make her role as my diabetes educator redundant. After the first year or so, I went on managing my diabetes without regular education sessions.
As I began to consider insulin pumping last year, I felt that it was time to touch base with Gwen again. Nerves after such a long space of time were immediately relieved, as Gwen proceeded as though our last appointment was only yesterday. She approached the matter with the seriousness it deserved. She never sought to influence or sway my decision either way, and respected the decision that I eventually made.
It’s hard to imagine starting out on an insulin pump with anyone other than Gwen. Nerves were eased going into it with someone I was so familiar and comfortable with. It was fantastic to be able to chat with Gwen over the phone every day during that first week. I was very comfortable uploading all of my data to Diasend for her to see.
Last week, I had my final education session with Gwen before she retires at the end of the month. Even though there has been considerable distance between our sessions over the years, I still find it hard to say goodbye to someone who’s been there since the very beginning.
Gwen has been a huge part of my diabetes journey. She is the professional who has the time for me. Who sits down with me, and has my undivided attention for a whole hour. Who knows me, and the very hands on approach I take towards managing my diabetes. My GP, although excellent, doesn’t often have the time for me and is quick to dismiss my concerns. I don’t always see the same endocrinologist on clinic days. Too often, they are quick to sign off on my six monthly checkup and move on to a higher priority patient.
There have been a lot of changes over the past six years.
Back in the beginning, I managed my diabetes with a meter, insulin pens and a paper logbook. Today marks four weeks since I first started using an insulin pump. I also have access to a logbook meter, Diasend software to analyse my data electronically, and a FreeStyle Libre.
Back in the beginning, I was a nervous newly diagnosed teenager who used to shy away from his diabetes. Today I am a confident, passionate and knowledgable person who is empowered to make his own diabetes decisions.
In some ways, I feel as though I am reaching the end of a chapter in my diabetes journey. And it feels nice to have been able to close that chapter with Gwen.
Goodbye, Gwen. Wishing you a very happy and fulfilling retirement that you deserve.
With the life of my FreeStyle Libre sensor coming to an end in a few days, I thought I’d better write some observations while they are fresh in my mind.
I first put my Libre sensor on during Diabetes Exchange in Sydney (disclosures are at the bottom of this post). We were advised that the best place to wear the sensor was on the underside of the upper arm. In similar fashion to an insulin pump infusion site, the sensor came packaged in what looked like an insertion device. It simply “clicked” into place on the arm.
I’m the kind of person who easily gets annoyed by things. I fiddle with my watch, my medic alert bracelet presses too hard on my skin, and I am always picking at scabs. So I was pleasantly surprised that I have hardly noticed the Libre sensor. So far, the sensor has held nicely on my arm. I had one bath where the sensor was submerged in water for some of the time. I’ve had showers and changed my clothes every day, where the sensor is inevitably subject to some bumps and friction. The sensor is starting to look a little grubby around the edges, though, as it heads towards the end of its life.
Being Winter, my sensor often sits under warm clothes and I notice it less. It is likely exposed to lesser impact and outdoor activity compared to the warmer months of the year. I’m also not sure how comfortable I’d feel wearing this $95 sensor to the beach under some rough waves.
Some of the other bloggers raised the issue of the Libre not having alarms to alert them of high and low blood glucose readings, which is a very valid point. I am not particularly concerned by this. Just as with finger pricks, I check often enough to be able to catch any impending highs or lows. I’m all for something simple, and that minimises the diabetes junk that I have to carry around with me. The Libre fits the bill nicely. As with anything, more features will mean an even higher price tag.
A great deal of my Libre use has been checking my glucose levels after meals. This has given me an insight into where my levels are heading after I eat, and in evaluating the need to readjust settings and ratios on my new insulin pump. We were told that data may be less accurate than a finger prick when glucose levels are rapidly changing, so please bear this in mind around my observations.
My Libre reader has typically run around 1-2 mmol higher than the reading on my meter. I have also noticed a more significant difference where my Libre presents a reading greater than 15mmol. I have found greater accuracy where my levels are in single digits, and where there is no active meal bolus in my system.
That being said, the Libre has been super convenient to have while I’m transitioning to the insulin pump. It’s been a huge relief on my fingers at a time where I would likely be using test strips like water. Every morning, I plug it into the computer and upload the data to Diasend. It gives me access to detailed graphs that have tracked the movement of my levels through the night, which is extremely helpful in making decisions around my overnight basal insulin rate.
I walked around without my meter and test strips while I was in Sydney quite comfortably, too. The reader was quite easy to carry around, and fitted nicely into a t-shirt or jeans pocket. It was a really convenient tool to evaluate my blood sugar levels after some big Sydney meals, and a reliable indicator of glucose trends. I would definitely consider buying a sensor next time I plan on travelling.
After a week and a half with my sensor, I am also feeling extremely challenged not to micromanage data. It’s extremely challenging to look at those annoying trend arrows after meals and not respond to them. It’s for the same reason that I’m not particularly interested in using a Continuous Glucose Monitor (not to mention the price!). I will definitely miss the convenience and the detail of my Libre data when my sensor shuts down on Thursday, but I am also very much looking forward to a break.
You can find out more about the upcoming Australian launch of the FreeStyle Libre at freestylelibre.com.au.
Disclosure: Abbott paid for my travel and accommodation expenses to and from Sydney. I received a FreeStyle Libre reader and 2 sensors free of charge. There was no expectation that I would blog about the Libre. All opinions expressed here remain my own.
Two weeks ago, I had the privilege of attending Abbott’s Diabetes Exchange event in Sydney (see below for disclosures). I went into this event excited about trialling the FreeStyle Libre, and meeting some of the other Australian bloggers in person. Having only communicated with PR ladies Hannah and Laura prior to the event, I was surprised to learn that there was an Australian based Abbott team. I was also pleasantly surprised that they were such a core part of our proceedings over the two days.
Peter, Bruce, Michael, Pamela and Jen were with us throughout the whole two days worth of proceedings. They each presented in front of us, but they were also very much with us in a social context, too. They dined with us on Thursday evening, they sat next to us during the formal proceedings, and they also put their cooking skills to the test with us on Friday afternoon at the Sydney Fish Market.
Going into this event, I honestly wouldn’t have thought I’d have anything in common with these guys. They were there to sell us a product, after all. However, I had some really great conversations with most of them. Although not all of them had diabetes themselves, I could see how genuinely passionate they were in the work they did. I could see how genuinely interested they were in us. Not just about the diabetes, either. I recall speaking with Jen, in particular, for at least an hour at dinner on Thursday.
One of the highlights of the event was hearing from Udo Hoss, who talked us through the “science” of the FreeStyle Libre.
We learned about how the Libre sensors were clinically proven to produce accurate and consistent results across their whole 14 day life. I learned about the term Mean Absolute Relative Distance (MARD) from regular blood glucose checking. From memory, the MARD must be below 15% in order to be a reliable indicator of glucose levels. The Libre system achieved a MARD of 11.4% across its 14 day sensor life, making it accurate enough to make insulin dosing decisions from. For this reason, Abbott are pitching the Libre as a replacement for finger pricks.
Given that the MARD is slightly higher during the first 24 hours, I cheekily put my hand up and suggested that we should receive an extra day’s worth of sensor life to compensate. There was a lot of laughter in the room, but sadly no leeway!
There were also three conditions where we were told to confirm a Libre scan with a finger prick.
We raised the question of how we would be able to push the sensor life beyond it’s 14 days. Unfortunately they automatically shut down, as Abbott cannot guarantee their accuracy or safety beyond the 14 day life.
We were also told that the data lagged by about 6 minutes.
It’s easy to sit behind a computer and complain about something being too expensive, or something else being difficult to access. Trust me, I’m guilty of it. Yes, Abbott are a business, and like any business they are trying to sell us a product. I acknowledge how privileged I am to be able to try this product free of charge. The $95 price tag for each sensor will place it out of reach for many, I’m sure.
That being said, sitting in with the team from Abbott really gave me a greater appreciation for the whole product. I had a much greater appreciation for the whole research and development process, and not just the item that I see on the shelf at the Chemist.
Thanks again to the team at Abbott for your great hospitality, and for having me at DX2 Sydney.
You can learn more about the Australian launch of the FreeStyle Libre at freestylelibre.com.au.
Disclosure: Abbott paid for my travel expenses to and from Sydney. I received a FreeStyle Libre reader and two sensors free of charge. There was no compensation, or expectation that I would blog about the event. All opinions expressed here are my own.
The last two weeks have been an absolute blur. This month has been diabetes overload. The new devices that are attached to me are a big reminder of that, although not necessarily in a bad way. My desk is an absolute mess of cable cords, information booklets, carb counting books and test strip containers. Every time I clean it up, I end up needing to pull the stuff out again.
I’ve been asked so many times about how I was feeling in the lead up to insulin pump day. Yet the reality didn’t actually set in until I was at diabetes clinic last Monday morning. Some of the other questions around it, however, have been rather amusing.
So when do you go in for your surgery?
Is it like a computer that’s strapped to your back?
It’ll be quite heavy. Will you still be right to work here?
Does the insulin go in through an IV line?
And my favourite, courtesy of one of my Aunts:
They’re going to have to cut you open! They’re going to have to cut you open!
It’s so bloody hard to explain what it actually is, so I’m really looking forward to being able to pull out my pump and show everyone.
Sidenote: My favourite diabetes hack from Friday’s Diabetes Blog Week prompt goes to Laddie at Test Guess and Go – objects photograph better on colours.
The biggest misconception here, is that people thought I was taking time off for a physical recovery after the insulin pump. The truth is, it’s been more of a mental one. I’ve slept over almost every alarm that I’ve set for myself during the night to test, simply because my brain is fried from diabetes. Even harder, is the fact that most people won’t see the huge learning curve of these initial weeks.
Every night this week, I’ve been putting my overnight basal insulin rate to the test. Seeing if it will hold my BGLs steady, drop me further, or make me spike. Every morning, I’ve plugged my devices into the computer and analysed the results. Having access to such detailed data through my FreeStyle Libre (I received a reader and two sensors free of charge – further disclosures are here) has been helpful in tracking the movement of my BGLs overnight, and making changes to my basal insulin rate. It’s also a challenge not to respond to those annoying trend arrows and micromanage data.
Having both my diabetes educator, and my family to talk it through with each day has been a huge support. I’ve sorely missed my educator’s guiding hand over the weekend, and I hope that I haven’t veered too far away from the road in my decision making. Being home to navigate my way through it this past week has also been a massive relief. But I’m also a little overwhelmed at the new factors that will be thrown into the mix when I head back to work tomorrow.
This past week has taken enormous patience. I’ve hardly even made a dent in my homework. Once my overnight basal rate holds me steady, I’ll move onto testing my morning basal insulin rate, where I’ll have to deal with morning cortisol glucose dumps. Then the afternoon, and then the evening. Then fine tune Insulin to Carbohydrate ratios, and correction ratios.
It’s hard to remind myself that this will take time to get right.
Amongst all of this, it was hard to believe that it was also my birthday yesterday.
It was such a relief to have that guidance from the pump in bolussing insulin for my birthday dinner, rather than my lazy guesstimates. It was so nice to simply pull out the pump from my pocket, and push a few buttons to bolus for the cake.
The pump is one of the greatest birthday gifts I could have wished for this year. It’s a brand new chapter for my diabetes, and I’m confident the change will be a positive one.
