A few weeks back I gave a presentation to a group of healthcare professionals on my journey with type 1 diabetes technology, and how it has helped and hindered me. You’ve probably seen bits and pieces of this talk scattered across various blog posts, but it was nice to put this all into one piece of writing. Strap yourself in – this is a long one!
I was one of the privileged few who got to join the diagnosed-a-few-weeks-before-turning-18-club. I was midway through my first semester of uni, working my first real job, and driving with my Provisional license. Until type 1 diabetes came along in May 2010.
For the first six years, I managed my diabetes on Multiple Daily Injections. This meant one shot of Lantus insulin for my basal every night, and Novorapid injections with my meals. Injections were frustrating. I never felt I could get my Lantus dose quite right. Although I had learned to carb count, I lost the motivation to do it, because I never really saw any results. I was guessing most of my insulin doses, and there were lots of exhausting lows and highs.
Injections were inconvenient, especially when I was out. I often found myself putting off corrections, and giving my insulin doses after a meal was over. I kept blaming myself for what I ate. I often felt riddled with feelings of guilt, and kept telling myself that I would snap out of my rut and get back on track with my management. But diabetes just felt very overwhelming, and impossible to manage.
Back then, blood glucose meters didn’t have all the bells and whistles they do today. Meters didn’t have USB ports. I had to keep that dreaded paper logbook of levels and insulin doses. It was an absolute pain to have to stop and record my levels, on top of all of the other diabetes management tasks. I often found myself filling in weeks of missing data prior to clinic day, and even fudging some. When my diabetes educator pointed to a spot in the logbook and asked me what happened here, Frank? I was left scratching my head trying to remember.
In 2015, I ventured online. I began writing my blog, Type 1 Writes. I began connecting with other people with diabetes through social media, and watched them share their experiences so candidly. I began reading more about diabetes, and developed a genuine interest in it. I no longer felt so conscious about having type 1 diabetes, but rather more motivated to better manage it.
Online, diabetes technology was often the hot talk of the town. A lot of people in the Diabetes Online Community used, and were passionate about technology. Here I was thinking pumps were only for young kids, or for people who were having a harder time with diabetes than I was.
My diabetes management wasn’t very crash hot at the time. The public system of care pushed me towards self management as soon as I was able, and I had lost touch with my diabetes educator for some time. Although my hba1c was sitting in a range that was considered “satisfactory” by my endocrinologist, I wasn’t happy. I knew that it was riddled with lows and highs. I didn’t feel great. I knew that I could do better. I couldn’t keep cruising along, and needed to speak up for what I wanted.
Towards the end of 2015, I began to consider an insulin pump. I went to an information evening hosted by Diabetes WA, and later got back in touch with my diabetes educator to discuss it. The decision to switch to an insulin pump was not something that I took lightly. I knew that a pump wouldn’t simply fix all of the problems I had with my diabetes. It would be a big responsibility. I was expecting a steep learning curve. And I knew that there was a greater risk of going into DKA.
I can still remember my diabetes educator asking me if I wanted to get the process started during that first session. Instead I decided to think about it, and made the decision at our next appointment in three month’s time.
Starting insulin pump therapy in May 2016 was like building the foundation that my diabetes management had been missing for so long.
There was the potential for so many more things to go wrong with a pump. Insulin cartridges needed to be filled and replaced every couple of days. Infusion sites needed to be changed, and rotated around on my stomach, every three days. Pump batteries need to be changed when the alarm sounded. I had to keep an eye on my pump line for air bubbles, that could restrict the insulin being delivered to me. I had to keep an eye on the infusion sites on my stomach for any signs of bruising or bleeding. Not to mention becoming comfortable with having a device attached to me while I sleep!
Site failures were a big hurdle for me in those initial months of pumping. I was using a 90 degree infusion set with an insertion device, and dealt with a lot of anxiety every time I had to change it. After every new site change, I became really paranoid over whether it was a failure or success. I would poke and prod my infusion site, trying to blindly detect a kinked cannula sitting underneath my skin. I would watch the colour of the skin around my infusion sites like a hawk, looking for any signs of bruising or bleeding. I would stand on edge while my pump was delivering an insulin bolus, waiting to feel any stinging.
I can still recall one tumultuous night where my blood sugar levels were soaring into the 20s, and no amount of insulin would bring them down. Hours later when my meter was showing ketones, I finally ripped out my infusion site to discover a kinked cannula.
There were moments like these initially, where I was an emotional wreck. I just wanted to rip my pump out and throw it against the wall. There were a few low points where I seriously wondered whether insulin pumping was working for me. Thankfully, at the suggestion of some of my blog readers, I switched to an angled infusion set with a manual insertion, and the anxiety dissipated.
A well tuned basal and bolus regimen is the foundation to successfully managing type 1 diabetes. That was probably my biggest challenge in those initial months on an insulin pump.
Setting my basal, or background rates of insulin, involved conducting what is called a basal test. This involves fasting over a six hour window, and evaluating how well the rate of background insulin keeps me steady. This was an enormous task, particularly in the mornings where I needed more insulin to offset the extra glucose released by the liver.
It required a great deal of patience. There were days where I couldn’t do a basal test, because my numbers were higher than ideal. There were days where a basal test was cut short by a low blood sugar. There were days where the tweaks just didn’t seem to fix the problem. And there were days where I simply couldn’t go without my morning coffee! It took me a good two or three months until my basal rates were finally 100%.
Any healthcare professional will also tell you that you need to be able to count carbohydrates if you want to use an insulin pump. I’ve really surprised myself in that regard, because I was expecting that I would eventually slack off and go back to guessing. Yet today, I can’t imagine not counting carbohydrates. I continue to experiment with techniques such as timing of insulin delivery, and covering higher protein or higher fat meals. Smartphone apps like Calorie King are also a lifesaver for carbohydrate counts, as well as protein and fat.
I was also fortunate enough to also have access to the FreeStyle Libre Flash Glucose Monitoring System when I started out on my pump. For the most part, the Libre was a replacement for fingersticks. The Libre provided me with a glucose reading, an 8 hour history, and arrows indicating the direction in which my glucose levels were trending, every time I swiped the reader over the sensor on my upper arm.
For my needs, the Libre was perfect. I check my blood sugar frequently throughout the day, so the Libre fitted the bill nicely in adding some convenience to that. I liked that the hardware was minimal, and that it didn’t use up a lot of real estate on my body. Bells and whistles such as alarms and data sharing aren’t as important to me, especially if it pushes up the price of the product.
I guess where I have struggled the most is setting boundaries around Continuous Glucose data. I have found it easy to become obsessed with the data after wearing my Libre for too long. There have been times where my behaviour hasn’t been too healthy. I’ve found myself compulsively checking my levels while I’m sitting on the couch in the evenings watching television. The trend arrows are frustrating to see at times, and it’s hard to remind myself that they are only temporary. Against better judgement, I do tend to over react to the data, which sends me low far more often that I should be.
Late last year, I reached a point where I looked at my graphs and realised that I wasn’t using the Libre as effectively as I did in the beginning. I thought to myself, am I checking my blood sugar because I need to, or just for the sake of it? Since then, I have decided that the Libre is not something that I can wear all the time. I prefer to use it for the purposes of fine tuning basal or boluses, when I need a break, or when I plan on cruising my way through all the Christmas food. I need time away from the tech, in order to be able to use it most effectively.
Which brings me to good old fashioned fingersticks.
Traditional blood glucose monitoring forces me to think about whether I need to check my blood sugar, or whether I’m simply doing it because I can. I read the number, act on it, and move on. My head isn’t consumed by numbers so much, and my mood isn’t dependent on trend arrows. In fact, there have been periods where the numbers have been better than those on the Libre, simply because I’m not micro managing numbers.
I love how far blood glucose meters have come since I was diagnosed.
Today, meters have USB ports. I can simply plug my meter into the computer before an appointment, and upload the data from all of my devices to computer software such as Diasend. I don’t need to scratch my head every time I’m asked “what happened here,” because Diasend compiles data from my insulin pump, meters and Libre into one easy to read report.
When I was first diagnosed, blood glucose meters weren’t as flashy or stylish as they are today. They were boring. Today, meters have backlights for testing in the dark, colour screens, bolus calculators, alarms, smaller test strips, smaller samples of blood, stylish cases and cooler lancing devices. There are Mum and Dad businesses selling stickers and accessories to brighten up our diabetes devices. Diabetes can feel so monotonous at times, that these small features really do help pep me up in my daily management tasks.
There’s an old saying that goes something along the lines of “an insulin pump is only as smart as the person pushing the buttons.” I couldn’t agree with this statement more.
Over the past year, technology has been a lot of hard work. In fact, it’s been harder work than Multiple Daily Injections. I can honestly say that I am still learning new things about insulin pumping today. I am still learning new things about my diabetes today. Technology was an investment that I needed to put the hard work into, in order to reap the benefits. I needed to learn how to use my devices properly. I needed to take responsibility for the maintenance of these devices. I inevitably had to go through moments of burnout and failure.
Technology is not a solution for diabetes. Not everyone will be able to make this kind of an investment.
After seven years of borderline average diabetes management, I felt like I owed it to myself to give it a go and see if I could do better.
I didn’t see the results overnight. In my first three months on a pump, my hba1c actually went up as I adjusted to using these devices. But I continued to put the hard work in, and I eventually saw the benefits.
Today, I feel more confident with my diabetes management than I ever have. My numbers don’t go as high as they once did. The lows don’t happen as often as they once did. I can sleep through the night with steady, in range blood sugar levels – something I once thought was impossible. I was able to get my hba1c to where I wanted it to be. For the first time in my life, I’m proud of that number, because I know that it’s not riddled with lows and highs. And I’ve been able to maintain that number ever since.
While the technology has certainly improved the quality of my life with type 1 diabetes, the hard work I put into these devices has helped me just as much.
excellent excellent post! I learned so much…
I find that most of us in the USA are very comfortable talking the tech of diabetes. Unfortunately we lack the ability or will to discuss the most important thing in a type 1’s life, insulin and specifically the price of it. I think if we in the USA could discuss that with med students, we woudl have a line out the door to express ourselves.
Good for you Frank! I’m so glad to hear that you have come to a good place using the pump. It is such a task managing the head space of diabetes. We all do the good numbers/bad numbers game. It’s hard to step back and not let the information stream manage our emotions. It sounds like you’ve found a good balance walking that tight rope. Kudos!