Have you ever woken up in the middle of the night with an idea, where all sorts of thoughts came together? It happens to me all the time with writing ideas, and last night it happened with my wake up alarm to check my BGL…something I have not had to do since starting with CGM. But yesterday I changed my DexcomG5 sensor and for the first time, had a dud. The sensor failed on me, and I had mistakenly thought I had one more, but alas it was the last one. I had already put in an order and called to get a replacement, but I have 48 hours without the CGM while waiting the arrival of the new sensors. It made me very sad. Now bear in mind just 6 weeks ago I was not using CGM. I was relying on 2 alarms each night to check my BGL and more than 20 finger pricks each day, to keep the ship as steady as possible. Yet in just a short time, I realised as I went sans Dexy, how much I had come to rely on those trends arrows. With this on my mind, and after starting to sit in on as much of the European Diabetes Conference as possible via twitter #EASD2017 last night and their fabulous virtual stream, which you can join here, I woke up with thoughts about trends, arrows and data in diabetes. A hot topic at the recent ADS/ADEA diabetes conference here in Australia, this is also a current topic at EASD. This is one of the biggest diabetes conferences in the world, with over 15,000 attendees. Some selected sessions are live streamed and webcast later.
There was much talk at both conferences about the importance of knowing why we are collecting data and what to do with it, and how diabetes health care professionals can be overwhelmed by too much data, as can people with diabetes. There has also been so far, quite a lot of discussion at EASD on individualising diabetes tech and being sure that it is accessible to people. The thing about data is that there is the big picture side of it – the looking at overall patterns and making decisions about whether your management needs tweaking, and then there is the day to day living with it side of things. This is what matters most to your quality of life. Each time you prick your finger or look at a CGM arrow, you are making a decision, such as do you a) take some insulin b) eat some food c) do nothing and get on with your day. This information can be literally guiding your every move. Is that a positive thing, a negative thing or a bit of both? It probably depends on the person, what you like to know about your body, how you react to that, and indeed what the actual numbers are. I have written recently about the importance of numbers here.
Overall I think that data is not just about numbers, and in fact your daily quality of life and wellbeing is the most important thing here. Yes we want to have diabetes that stays in target as much as possible to prevent short and long term complications, but the fact that data can assist you in having better quality of life is the thing I am most interested in. There can definitely be too much of a good thing when it comes to data however. The problem is that if someone is not taught what to do about numbers, even if it is just to keep an eye on things, there can be no point in them. I have also asked this question of specialists wanting me to have expensive and distressing tests recently for ongoing dizziness issues. I took the MRI (to make sure it was not a brain tumour, because….well brain tumour) but the balance tests sounded horrific. What difference will it make to how I live day to day, I asked? The specialist said probably none, other than sticking a tube in my dodgy ear which is likely to not help anyway. I have elected not to have the tests.
When it comes to home BGL checks, a person with type 2 diabetes for example, who is told to check their BGL but not what it means, or how to respond, may find numbers pointless, or even worse, devastating, if they are not what they would like to see. This can have all sorts of repercussions. On the flipside a person with type 2 diabetes who experiences better wellbeing through just knowing their numbers, even if they take no action, has the right to these numbers even if their health care professional sees it as a waste of time. A person with type 1 diabetes, who is often making management decisions based on the results all the time, may be hungry for those numbers. But again this is individual and may change over a life. When I was diagnosed at 12 years old I hated the numbers and wanted very little to do with them. To be fair, urine testing, followed by the clunky home glucose monitors, and the insulin regimes we had back then, did not really make for a happy numbers relationship. As I went into my teens and young adult years, numbers were not on my mind, and in fact I am not sure how often I even checked. I also did not take all of my insulin injections and generally went a bit AWOL when it came to my diabetes. As I grew into my 20’s and then became pregnant with my first child at 26, it became all about the numbers. Pregnancy is a time where it becomes ALL about the numbers for most women, and it can become exhausting. The need to ensure the health of your baby drives you to keep going. However without that need, it can be very hard for some people to want to play the numbers game.
When I experienced major depression and panic attacks later in my 30’s, I became fixated on numbers. Anxiety can bring with it similar feelings to a hypo – if you have experienced panic attacks you will know what I mean when I talk about the horrible dizzy feeling in your head, your heart beating out of your body, the nausea and gut pains….it can become so easy for the numbers to start to frighten you. Hypos become mixed up with panic attacks. Drops in BGL’s can lead to panic about hypos, and so the circle goes around and around. As I recovered from this period of my life, I was left with a more balanced relationship with numbers, but still, I became someone who loves data, as much of it as possible. With erratic BGL’s over the past decade or so due to gastroparesis and my ageing body, the numbers became more and more unpredictable and less easy to navigate.
The BGL checking regime I have been living is exhausting (also to my hubby who gets woken by the alarm each night) and also damaging to my fingers! While I get lots of numbers, they are like points on a scatter graph, and do not give me an idea of the rising and falling of my BGL’s. They are moments in time. It is something I was worrying about keeping up for the rest of my life. My new experience of CGM has given me a soft blanket under me. It feels like I have someone who has my back and the ability to pick rising and falling trends and react to them to avoid higher or lower dips and spikes, is priceless. The directions guide you like a compass, and enable you to take a more confident path. The steady arrow is the one most people come to crave – and this in itself can become problematic with the whole low carb push in some camps. No person has a flat BGL profile at all times. The push to achieve this in the type 1 diabetes community can be damaging and I am very keen to see over time, how people’s mental health is affected. Having been a lower carb person for quite a while and then recently shifting back to more carbs due to my messed up gastroparesis stomach, I have shifted my perspective to reducing the rise of the curve after meals, and the drop of the curve during exercise, ather than reducing the curves to zero.
So, while I am watching more of the discussions at EASD, I am pondering the question of whether too much data can be a bad thing or not? The answer is I think it depends. But I can say with all certainty that being wrapped up in a soft blanket and knowing where you are headed at any given moment is definitely better than standing alone in the wind on a rollercoaster day with diabetes.
What do you think about data?