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.
“Are you alright?”
“What’s wrong?”
“You seem quiet today.”
I knew why my work mates were asking. Diabetes has been affecting me so much at work lately, to the extent that my feelings could be read off my face with ease.
“I’m fine. It’s nothing.”
It wasn’t nothing. But the last thing I felt like doing was talking about it.
Going to work with the insulin pump has really tested my patience. I’m on my feet and moving around for much of the day, which makes insulin a lot more sensitive than normal. My work day is a prolonged period of physical activity, and not simply an hour of exercise. I guess what makes the insulin sensitivity more of a big deal with the pump, is that my basal insulin is being delivered to me live and continuously as I’m working, unlike Lantus.
For a few days last week, the hypos were relentless. I recall having at least three on one day, in particular, last week. Three. Every time I crack open a fresh canister of skittles, I hear my diabetes educator’s voice ringing loud and clear in my head.
Minimise the lows. The first thing we need to do is to minimise the lows.
Hypo unawareness is my biggest fear. With every passing hypo, all I think about is was whether I can feel it or not. I think about how much longer I will be able to feel them. At the end of it, all I really want to do is succumb to the defeating exhaustion that follows.
I had talked over my work day with my diabetes educator in the beginning. On a scale of 1 to 5, I’d rated my level of physical activity at around a 3. We’d anticipated a reduction in basal insulin requirements while I was working. I just never anticipated that the taps would take so long to turn down. I’ve now reduced my basal rates to about one seventh of my normal rate, and it finally seems to be holding me steady through the mornings.
The other factor that I am also starting to consider is the insulin I take to cover my meals at work. I’ve been plummeting quite quickly after my lunchtime insulin dose, and I’m starting to think that I might need to reduce my bolus by a certain percentage.
I’m hardly a role model for physical activity. I’d never have guessed that it would be such a significant issue for me on the pump. Not in a million years did I expect to be here, writing about physical activity and diabetes!
But I’m close. I’m really close to nailing this.
I felt a lot more comfortable adjusting to the insulin pump at home, despite the enormous patience and mental strength it required. I didn’t have the added stress or pressure of being at work, or anywhere, at a given time. By the end of week one, my overnight basal rates were holding me steady through the night, and my diabetes educator was confident in my ability to justify the decisions I’d made around my basal rates. I saw out the week with a greater level of confidence in the device that was attached to me.
Going back to work, however, threw a curveball into the mix. It was a great relief to be able to pull out the pump and show everyone that it wasn’t a surgery, or a great big computer strapped to my back. But suddenly, my pump workload had doubled. I had two very different days, with very different activity and insulin requirements to consider.
My job is quite a physical one. I am on my feet for much of the day. Some days I am simply standing around the table where my team breaks down deliveries. Other days I am climbing ladders, lifting things intensively, or furiously unblocking the cardboard chute. The intensity of my activity often varies throughout my work day.
My biggest setback in those first few days was hyper programming my pump settings, without being patient enough to see them through the day before making changes.
I had initially set my basal rate to drop back a notch at 7.30am, half an hour into my work day. In response to a 17.0 on my FreeStyle Libre on Thursday morning, I gave a 2.5 unit correction that my pump suggested.
The ease of access to glucose data through my FreeStyle Libre tested my patience that morning. I was compulsively scanning. Scanning, scanning, scanning, way too frequently. Upward trend arrows, hitting glucose levels of 18, 20 and 22 within minutes. I was impatient, and set a temporary basal insulin rate of +10%.
Within half an hour, my levels were starting to fall. Feeling satisfied, I cancelled the temporary basal rate.
Half an hour later, I was still falling. I kicked my basal rate down again.
Half an hour later, and I found myself hypo. I set a temporary basal rate of -50%, and treated it.
My biggest mistake in those first few days at work was trying to micro manage data after meals, before the insulin had finished doing its work. My diabetes educator had told me that the first thing we needed to do was to minimise the lows. Yet I couldn’t get that stupid high off my mind.
I know damn well that insulin takes time to kick in, but I ignored my better judgement. I probably upped my basal rates unnecessarily, which was essentially extra rapid acting insulin in my system in the hours that followed.
I paid for my compulsion throughout those first few days with some very exhausting lows.
This week, I am trying not to hyper program my pump. I am setting basal rates the night before, and sticking with them through the day before making changes.
I am trying to remember that what goes up, must eventually come down again.
I had it under good authority that first site changes are a mess, and boy did I learn my lesson last Thursday morning when I did mine.
I left the old site on my stomach in place, until I was sure that the new one was a success. I opened the insertion device, unwound the cannula, unwound the paper from the adhesive, and pulled back on the inner white plastic. I squeezed on the edges of my insertion device until it “clicked” into place onto my stomach, directly above the old one.
I pressed down to ensure the adhesive had stuck, and then pulled the insertion device up. This is what was left on my stomach.
I could feel uncomfortable pinching underneath. My first site certainly didn’t feel like this. I looked at my site, and I knew straight away that I’d gone too far left, and too far up on my stomach. There was hardly enough body fat underneath the site to cushion it. I had to rip it out, and start all over again.
After connecting the other end of the tubing to the insulin cartridge inside my pump, I went to prime it. Insulin wasn’t coming out. I primed again. I still couldn’t see any insulin coming out.
By this point, I had been disconnected from my insulin for at least half an hour. My desk, my bed and my dresser were strewn with diabetes junk. Fucking diabetes. Fucking diabetes, I cursed out load as I searched around frantically for my workbooks. Not to mention I had the live Survivor finale on timeshift that morning, which I’d planned to be watching by this point. After finding the page that talked me through refilling and replacing an insulin cartridge, I primed again. There wasn’t a single drop of insulin coming out of the cannula.
With all avenues exhausted, I decided to give the AMSL diabetes helpline a call and see if they could help.
Guess what? You know how when you start a new insulin pen, you have to prime 10 or so units until the insulin comes out? That’s all I had to do with the pump. Hold down the prime button until insulin came out. I felt so stupid.
On the bright side, my second site change on Saturday was a piece of cake. I think I’ve got this…
