Helen Edwards from Diabetes Can’t Stop Me has written a thoughtful piece today on her blog about why she has ‘broken up with CGM’.
I truly love this post, because it once again reinforces the ‘one size fits no one’ approach that I have always advocated when it comes to diabetes.
As I read Helen’s story, I realised I could have written this post. I was reminded of the long and very winding road that it took for me to get to a point where I could live comfortably with all the tech. Learning to love it took even longer. It certainly was not love at first sensor! For a long time, I felt overwhelmed by all the data, the alarms drove me to distraction and I struggled at times to live with an invisible condition when all my robot bits are on show.
I showed the below photo during my talk at ADATS last week. It’s from a few years ago (and accompanied this post) when I was really struggling to live alongside CGM. I had to work up to convince myself to put on a sensor and made all sorts of deals to try to limit the stress I was feeling. I turned off all the alarms except for the low alarm. I promised myself that I would rip the sensor out if I was starting to be paralysed with all the information being constantly thrown at me. And I reminded myself that the data was just numbers trying to retrain my brain to not feel judged by the electronic device.
This wasn’t the first time I made such a deal with myself. And it took this and many other attempts of starting to wear CGM before everything feel into place. There were times where I pulled sensors out after two days because I just couldn’t cope with it.
Learning to live alongside diabetes technology is not an easy decision. There is bargaining, sacrificing and trade-offs. The tech is brilliant, but it rarely, if ever, works as simply as the shiny brochures promise. It’s not perfect and the limitations of the technology should never be blamed on the person wearing it.
Also, it’s no good speaking to people like me, because I’m all evangelical about it and spend all my time telling people how much I love it – while conveniently forgetting how long it took to find that place.
The tech is not for everyone and no one should be made to feel bad if they choose a more analogue approach to diabetes management. This is another slide I showed at last week’s ADATS meeting (from this post):
Right device; right time; right person. The right device might actually be no device at all. And that is absolutely fine!
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October 26, 2017 at 10:51 am
GB
Device manufacturers still have a long way to come in user experience and seem to have a complete lack of respect for their users mental wellbeing.
For example, Dexcom do not allow their device to be silenced. Got an important meeting or a sleeping baby? Tough crap. You’re going to get alarms and because you can’t be trusted to just glance at your device.
So instead of being able to use the device on our terms, we’re stuck quiet literally having to turn it off. How does that benefit anyone?
Likewise, I don’t use one of the newer Medtronic pumps because its so goddamn needy, requiring constant care and interventions every few hours. I’m sure I’d benefit vasty from it, but I wont give up control on my terms.
This is actually the reason I stay on a Libre. Its a patient friendly device – I can disable all sounds and vibrations on the reader and doesn’t require any user interaction except to scan. Lets hope they don’t screw it up when they go bluetooth.
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October 26, 2017 at 11:40 am
Rick Phillips
I also read and admired Helen’s post. I disagree with the conclusion (silence the CGM), but I applaud her ability to do it. I will be keeping my CGM, because I love it.
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October 26, 2017 at 12:41 pm
Helen (@heltweet)
Thanks Renza. #nojudgement from me, Helen’s mum. x
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