T1 Talk: Managing the Unmanageable (Part Two)
Welcome back to T1 Talk, a blog series between Frank and I about life as young Aussies with T1, on opposite sides of the country. This is Part 2 of a 2 part topic on managing the unmanageable: Type 1 Diabetes. You can find Part 1 over on Frank's blog here. We'll pick up where we left off:
Pens or Pump? Which one do you use, and why do you continue to stick with it?
Bec: For readers of my blog, pens is another term for injections of insulin. Yes, they really look like pens! Check out this post for a rundown of diabetes tools (fair warning, it's beyond outdated).
I was on injections for under a year. I loathed them, not because of pain but because of teen embarrassment. I moved to the pump very early on and haven’t looked back. It’s been over 6 years of pump therapy and I’d be flat out working out how to live off injections if required. Bit of a worry actually, I’m very reliant on the pump now.
Frank: That’s interesting, and probably highlights our age gap between diagnosis. I never loathed injections, but I never felt comfortable doing them around others either. I don’t actually worry too much about being reliant on the pump as I do with CGM, because I know that I will be able to afford the costs thanks to private health insurance and the NDSS subsidies.
I started insulin pump therapy a year ago. I prefer pumping because I am able to customise my basal insulin to the time of day. I can set a higher rate of basal from early morning to offset dawn phenomenon, and overall the coverage is much better than Lantus ever was. It’s more convenient to give insulin or correct high blood sugars when I’m out and about. The bolus calculator makes it easy to count carbs. It’s just helped me to better focus on my management.
Bec: I completely agree, it gives many more options for control and is just plain convenient. Plus, no one gives me filthy looks for pulling out a pump like they did when I brought out a needle.
What spurred the change? Was it your idea? A healthcare professional? Or your peers?
Bec: My paediatric endo was VERY big on pumps. Huge. I’m pretty sure he mentioned it the day I was diagnosed. I was completely against the idea at first. I had just learnt about this condition and hated that other people noticed it in public. I hated the visibility of t1 because 14 year olds like to blend into crowds. I was thinking about it all the time and could think of nothing worse than something attached to me as a constant reminder that I was “sick”. Plus I was weirdly scared about the tubing being caught on things all the time. Eventually I got over myself and decided that a pump would mean less injecting. Which in turn meant I wouldn’t have to go to the sick bay every day to inject. Visible device vs daily awkward shuffle to inject at lunch time? I never looked back. Obviously years later I have other less juvenile reasons for using a pump :)
Frank: I wonder if your pro-pump endo is a paediatric thing, or if it was just him. Either way, it makes me happy to hear that. I never really thought about the visibility of my pump. I guess that might be because I got mine later than you, and at a time where I was a little more comfortable with my condition.
I was pretty unmotivated with my management. I was guesstimating most of my insulin doses and had exhausting swings in my blood sugar levels as a result. I knew that something had to change if I ever hoped to better manage my blood sugar levels. My biggest struggle was with Lantus. I could never get the dose quite right, so I was definitely lured by the promise of being able to customise basal insulin to the time of day on the pump.
What spurred the change? I learned more about pumps after I first ventured online and began connecting with other people with diabetes. I saw that pumps were more of a normality among those online, and not only for people who were prescribed one by their doctor.
I went to an information evening hosted by Diabetes WA, and later got in touch with my diabetes educator to discuss it. She was really supportive and unbiased. Three months later after making my decision, I was hooked up to a pump! It’s a shame nobody suggested or prompted the change to me in six years, because it really has been a game changer. I really feel for others out there who might not be as engaged as I am, or motivated to speak up for what they want.
Bec: I think it was just his thing honestly. He thought they were the greatest things ever. I think both being comfortable with your condition and yourself come into play when considering a pump. That really is such a shame that you weren’t given that option earlier on. I think by sharing your story you’re giving other people that prompt to ask questions about their management and see what tools are out there.
Frank: Naww, thanks! I hope so.
Was it hard to make changes in your management?
Bec: Like the rest of my diabetes technology, I hated the pump at first. I thought I’d made the most expensive mistake of my short 15 year old life. I remember the first time I had it connected and had lunch. I forgot to bolus before eating and burst into tears because I’d already stuffed it up. Before making the change I had read the book “Pumping Insulin” and it just felt like information overload. It’s a great book and I will have to revisit it now I’m much older and ready for that information. It just felt like too much for a while. I somehow managed it while at school but like you, I’m not sure if I could have done it in uni.
Frank: I’ve been meaning to read Pumping Insulin! You’ll have to re-read it and let me know if it’s any good. I had my doubts about the pump, too. Site failures were a huge issue for me in the beginning. They were overwhelming me, and led to a nasty burnout. Thankfully, I switched infusion sets and eventually got over it.
The pump was a huge learning curve. It has definitely improved the quality of my life, but I won’t underestimate the enormous investment I’ve had to put towards being more active in my self management efforts. It’s probably taken me a year to get to where I wanted to be. I’m not sure I would have been able to do this if I was still at uni or had a more demanding job.
Bec: Learning something new always takes time. I think you’ve handled it really well.
What about glucose monitoring? Fingersticks, CGM, or Flash Monitor?
Bec: I use fingersticks and a CGM. The CGM is a new addition for me. If you asked me a year ago whether I would be using a CGM I would have given you a definite no. I didn’t like to think about it too much because I knew I could never afford it. I also worried if I tried it I wouldn’t be able to give it up, which would be awful as I couldn’t afford to keep it. However, my family all came together to pay for half of the yearly cost for my 21st and Christmas. So here I am, using a CGM. I’ve had a rough couple of months and that CGM has made glucose monitoring so much easier. I’m not sure how I would have coped without it at the time. I think I could go off it if needed, but considering my hypo unawareness and unpredictable fluctuations at the moment, it’s invaluable.
Frank: Aww, I think it’s really nice of your family to pitch in towards your CGM. I use a combination of fingersticks and a flash monitor. I was lucky enough to trial the FreeStyle Libre Flash Monitor at a pre-launch event in Sydney a year ago. It’s been a huge help during my pump start, while trying to work out basal rates and carb ratios. It’s also a life saver during physical activity where I can be more prone to going low. I don’t wear it all the time as it can be overwhelming. It’s also costly and I don’t want to become too dependent on it.
Bec: I’m intrigued by flash monitoring, but I think I’d compulsively check it. At least with the CGM it just alarms when there’s an issue. I have no need to check it any other time.
Frank: Yeah, it can be compulsive, which is why I don’t wear it all the time. But I honestly can’t imagine not looking at my CGM constantly if I had one, I think it’s just in my nature!
These devices are great, but do you ever feel like there’s just too much information?
Bec: I was definitely concerned about this when I got my CGM. I like information, and I worried that having access to my sugars all the time would do my head in. However, I was pleasantly surprised. I check less than I used to because I know my CGM will beep if there’s a problem. I don’t study my graphs. I don’t think about it half as much as I did in the past. So no, I’m not overloaded with that information. It’s a relief for me.
Frank: YES! I struggled with this a lot. It got to the point where I was compulsively scanning my FreeStyle Libre, and I wasn’t getting the most out of it. I was overreacting to data, and doing more harm than good. At the moment, I wear a sensor once per month, and then go with fingersticks for the remainder of the time. It really helps keep things fresh and exciting. I get the advantages of Continuous Glucose Data without letting it overwhelming me. At the moment, it is working for me.
Bec: I wonder how you’d go with a CGM. Like I mentioned before, I think I’d compulsively scan a flash meter too, but a CGM will alarm if there’s a problem. It takes away the need to check the sugar constantly. I’m glad you’ve found a way to liven it up a bit and it’s working for you!
There you have it, our second T1 Talk complete. How do you manage your T1? Have you changed your methods? Keep an eye out for our next topic on managing food, exercise and the emotional side of T1.