The out-of-the-blue email from Diabetes UK asked if Amy and I would be interested in doing an article for the Relative Values section of their Balance magazine, a smallish feature towards the back of the magazine. Weeks later both Amy and I were telling our stories to Balance’s editor Louise, who had the unenviable task of turning two 30 minute conversations into a few paragraphs each. Whilst our stories were about life and diagnosis we also talked about Nightscout, WeAreNotWaiting and the DIY looping Amy’s been doing on and off since March 2018. I’m aware of the worries Diabetes UK might hav ..read more

In June I rode to Paris with a 10 mums and dads of kids with Type 1, plus 16 year old Jack (who has Type 1 himself). Finally the videos are done. It was ridiculously hot, riding in temperatures up to 43 Celsius, that made it quite hard work at times. We managed to minimise some of the heat by leaving our hotels really early but it still wasn’t enough, especially on the hottest day, day 3. It was a self-supported ride, where we carried our own luggage, tools and spares, and were responsible for fixing any mechanicals. Out of the four Paris rides I’ve done we experienced the most issues this yea ..read more

I wrote this on a Facebook post back in 2016 but with many people adapting and sharing it I thought I’d blog it, with adaptions. Diabetes sucks.* 3242 days Amy has spent with this relentless condition, mostly always with a smile on her face, sometimes not, some days it’s fairly simple, other days/weeks/months not so much. A ‘simple’ day means… – her glucose levels are mostly in range; ‘range’ being a good word as for many glucose graphs look the Himalayas.** – she has to take insulin to balance for the food she eats. – which means she has to accurately know the carbs (& protein/fat) in wha ..read more

It seems like a long time ago from the World Diabetes Day 2018 post. How things have moved on during the last year. And Happy Birthday to this blog, 7 years old today! Focusing on real life. It’s been a year about real life, families, friends and fun. A year when I turned 50 – I know what you’re thinking, I don’t look old enough, right? A year when my wife Jane and I celebrated our 25th wedding anniversary. A year where Amy studied hard and achieved her three grade-A A-levels and got top 2% of the country for her UCAT medicine aptitude test A year which finishes with our eldest daughter Emilia ..read more

No I’m not referring to the wonderful set of friends within our local Hampshire/Dorset Sugarbuddies support group, but to the performance of Jade Byrne’s show Pricks. The Play. “I’ve had over 70,000 pricks… of the medical kind. This is my chance to set the record straight about type 1 diabetics like me. Despite what people say, I’m not bankrupting the NHS. And I can eat a cake – a whole bloody cake – if I want to.” I’d seen it before, at TAD2019, along with my daughter Amy. We both enjoyed it and thought we’d go and see it again when it toured nearby. That was last night in Bournemouth, but ty ..read more

A while ago the lovely people from Solent diabetes unit did an event for the public to find out their A1C – they used A1CNow kit. I had been aware of it for some time but the fact clinicians were using it – they probably had little other choice given the event’s location – I decided to buy some myself, for occasional home checking. Here’s a video on how to use on, including my result which was a fair bit higher than last time ..read more

It’s 6:30am and I’m awake now for the day, but I wasn’t woken up by any CGM remote monitoring alarms, nor clock alarms because I need to check Amy’s glucose levels, no, I’m just awake because it’s time to get ready for work. Reflecting back to two years ago when I wrote The Nightscout and GCSE Game Plan it’s amazing what a change using a DIY closed-loop artificial pancreas system (DIYAPS) makes to all our lives. Amy’s currently using AndroidAPS, Dexcom G5 CGM and a DanaRS insulin pump. Let’s do a comparison Two years ago using only Nightscout remote monitoring I would set an alarm on each exam ..read more

Last night’s clinic appointment was the quickest one ever, not that time is a measure of a successful appointment, but it felt really nice. Normally Amy has great chats and lot of time with her normal Consultant but this time she had a Doctor she’s only seen once, some time ago. Other than clinic notes the new Consultant knew nothing about Amy’s history with the pumps, she’d never seen her/a DanaRS or knew that Amy has used DIY looping part time for a while now. (Amy’s not a fan of wearing CGM so has regular breaks from CGM/looping, her choice, it works well for her.) As usual all the measurem ..read more

Two days after presenting about DIY looping at the Diabetes UK Professional conference, I had another groundbreaking experience: presenting #WeAreNotWaiting at a JDRF Discovery Day.Rolling back to January 2016, Amy, Stuart, Kate and myself presented to the board of JDRF, a wonderful team all amazed at what the WeAreNotWaiting community had done. “Would it be possible for us to present this at JDRF Discovery Days?” “No” came back the somewhat unsurprising answer, after all none of this is clinically trialled or approved. Many of us kept chatting with JDRF behind the scenes, keeping them abreas ..read more

“We’re thinking of running a DIY looping Hot Topic at the professional conference” the Diabetes UK Director told me, “and we’ll ask (Dr) Emma (Wilmot) to run it”. (A Hot Topic is usually quite a short session of 15 minutes or less.) “Hi Emma, just a quick message to say xxxxx told me about your possible Hot Topic session at DUKPC. If you need any clean images for presentations I’ve got a fair few…” I tweeted privately. [a few weeks passed] Emma’s email arrived. “I am delighted to report that DUK are keen to include a dedicated session on OpenAPS at DUK…I was hoping you would be agreeable to pr ..read more