Staying Out of The Loop

Lately I have been hearing a lot more about diabetes tech and in particular the work of companies who are developing closed loop insulin delivery systems, and the DIY version that has started to find its way to Australia. Essentially these systems enable automated basal insulin delivery, making multiple small adjustments constantly to keep your basal insulin rates steady and your blood glucose nice and straight. Presumably as you still have to manually bolus and could eat whatever you like and still get a post meal spike, the arrow will not always be straight during the day, and in my experience even protein raised my levels so low carb is not the holy grail. But the idea of a computer making the decisions about my insulin dose and then just doing it, scares the shit out of me. I remember being at a lecture over a decade ago where they were discussing a closed loop system and implantable devices. I was horrified and decided there and then that these kinds of systems were not for me. If you want to know more about the current DIY Loop version you can head here. 

This discussion about looping out in the online diabetes community is picking up steam as a small handful of high profile people in the community (who I adore and respect greatly) such as Renza from Diabetogenic (check her experiences out here) start sharing their looping journey. It is so wonderful to see people who are keen to try the latest tech and share what it is like for them, and to make this information freely available for those who want to give it a try. I am all for sharing as much information as possible and then for us to make informed, personal choices. There should be no hiding information behind closed doors, and certainly no barriers to people accessing what is available. However for me, I see that the drive for the closed loop, matches with the drive for a straight arrow on the CGM, or Flash Libre. It also matches with the drive for low carb eating and the idea that doing diabetes the “best” way, is to do it in a very very tight small range of blood glucose levels, no matter what the cost.

Here’s the thing for me – I have just had 3 months on the Dexcom CGM. At first I was falling in love with it. The way that it could in particular, keep me alerted overnight, seemed to be the best thing since insulin was discovered. For my mother, it was also a revelation after 38 years to be able to see if I was ok or not. However over time, the fast arrows up and down and the constant stream of information about my diabetes, started to make me feel like my face was pushed up against a diabetes glass window that could break at any time. I began to tell myself I would not look at the CGM app for half an hour, that when the arrow was dropping fast it did not mean I was going to end up in a coma…. I started to talk about my diabetes and my BGL’s ALL the time….I was constantly talking about it to my family. I could see the weariness in their faces and feel the weariness in my brain. Then I had the worst night ever with my diabetes, due to an overreaction to a fast dropping low, that led to a fast rising high and another fast dropping low and another high….this all ended in exhaustion and a lack of confidence, and suffice to say I have now broken up with CGM for a bit. The change in me was almost instant. I noticed it, my mum noticed it, and she also said her initial joy had turned to stress, as she had known with the arrows how I would be feeling. We breathed a collective sigh of relief. Am I missing it? Not that much. Probably overnight a little, but the time with the CGM enabled me to fine tune my basal rates so I am reasonably confident in those. I did have a rise overnight last night for no real reason, but I wake overnight a few times usually and picked it up and had a bolus. Had I not and woken to 15 mmol, would the world have ended? No. I would have been a bit annoyed but I would have had a bolus and eaten eggs for breakfast.

Sometimes I think we can forget what the end goal is. Mental health and wellbeing and quality of life are far more important to me than an HbA1c of 5%. All this focus on things that help us to have the perfect BGL’s can prevent us from remembering that there is more to life. I have been making the decisions about my diabetes for 38 years. It does not really bother me to do this. I spend a lot of time thinking about diabetes – mine and other people’s. It is part of my joy to work in diabetes, to share things with others and to have the privilege of doing diabetes research. But having constant access to what was happening in my own body was just a step too far. Perhaps I will go back, who knows, but at the moment I am far happier without it. I am far happier knowing how my body works and then going with that deep knowledge, developed over 38 years, trusting my decisions. I grew 3 amazing children without this diabetes tech – 2 of them without insulin pumps even. My goal in life is not to have a BGL of 5 mmol all the time. My goal in life is not to see a straight arrow all the time. My goal in life is not to try to have diabetes that is basically not like having diabetes. I do not think that living with diabetes tech will take away the work, or the thinking about diabetes, and in fact for me, the current versions of this tech did the absolute opposite. My goal in life is to be healthy, happy, balanced, relaxed, passionate, involved and doing something for the world, active and joyful. This does not require a BGL of 4 – 6 mmol at all times. It requires me to feel calm, in control of my life and my body, safe, secure and balanced. For me, too much information does not support these things and in fact it increased my anxiety levels.

So for now I am staying out of the loop. If you want to try looping, or can not wait for the next big thing in diabetes tech, that is absolutely wonderful. We should all do diabetes our own way, we should all support and raise each other up no matter how we choose to manage. If you want to go high carb or low carb, CGM or finger pricks, pump or pen, looping or not looping – that is brilliant, you are brilliant. Life with diabetes is not about diabetes. It is certainly not about how you manage diabetes. Life with diabetes is really about life. Life and all the things that make for wonderful one. Choose the best thing for you.

Helen xx

 

7 Comments

  1. Helen’s post | Diabetogenic on October 26, 2017 at 9:51 am

    […] 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’. […]

  2. Rick Phillips on October 26, 2017 at 11:33 am

    I adore my CGM and the cool pump (medtornic) that it brings me. At the same time I fully support your decision to opt out if you wish. Heck I opted out of meters and seeing doctors from 1977 to 1997. Now that is an opt out. I wish I had opted into health before 1997, but I didn’t and I am proud of myself for making it through.

    I wish you the very best and know this, we make these decisions based on where we are. So long as we make informed decisions it is all good.

    • Helen-Edwards on December 6, 2017 at 1:20 pm

      thanks for sharing Rick – Yes I opted out of that as a teen too!

  3. Annabelle Leve on October 26, 2017 at 2:47 pm

    Thanks for sharing once again Helen – so honest and always helping to spread the idea that there is no one way to live with diabetes, and right for now, might not be right for later. When I was reading earlier posts about the CGM etc (from third world status Laos where I was enjoying every second…) I actually cut off for awhile – because I couldn’t imagine having that constant awareness, and being reminded of it, ALL the time. As well as knowing I couldn’t afford it, I just felt that my diabetes takes up enough of my time and attention just being there, all the time, but I could still do amazing things without constantly testing/bolusing/paying extra attention to those numbers – which are just numbers… (as Renza too discusses).
    I want my life to be as you say “healthy, happy, balanced, relaxed, passionate, involved and doing something for the world, active and joyful. This does not require a BGL of 4 – 6 mmol at all times” – Diabetes does take some time and effort but I need to keep some time and effort for enjoying all those other things.

    • Helen-Edwards on December 6, 2017 at 1:20 pm

      thank you for sharing your experiencse Annabelle- all makes such sense to me and the numbers are just numbers is so important to remember,. So many more parts to our lives than diabetes

  4. Liz Ayers on October 29, 2017 at 8:39 pm

    I loved reading your thoughts here Helen. I am finally learning that bs above 7 (or 10 or 25) does not mean I am a failure as a human being.

    It has taken me a long while to get to this point. Now aged 43, T1 for 34…. and have only really accepted that in the past 12 months. I think since I found Renza’s blog actually, where her wise words over this time have helped me change my thinking.

    I am now using pump and cgm…. but have turned off the high and low alerts!! Makes me much more settled.
    Can definitely relate to the glazed looks from family (husband and two teenagers) you spoke of.

    Thank you Helen for giving another well thought out point of view.

    • Helen-Edwards on December 6, 2017 at 1:19 pm

      thank you Liz! That is so good to hear and it is really important that we can all make our own choices – wishing you all the best with your journey

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