Keep Me In The Loop

Type 1 Diabetes tech can advance pretty quickly. Even access to it, in some areas, has greatly improved in recent times and for that we have much to be grateful for. Of course, there is far more to do than has already been done. There are many who struggle to access some very basic things and, in the UK at least, a yawning disparity in care is obvious between areas. If the playing field will ever be levelled is debatable. With my most optimistic hat on, it seems certain to be a drawn process, as with many aspects of NHS care.

Yet! We continue to advance diabetes care in the UK (probably beyond) thanks to a little thing called "Peer support" Actually, it's not little at all. In terms of numbers, the peer support groups both online and in person, have grown enormously over the last few years. Indeed, you'll see diabetes-care-engaged HCPs communicating with these groups, recognising their importance, referring patients, etc. 

For me, it's not little at all in terms of the impact on my health and life.

Back in 2017, I had recently reached a "milestone age" and after going through a great deal of diabetes related issues I thought it was time to get to grips with my T1D. The story is long and rather dull, in short it involved creating social media and forum accounts, sharing, learning and trying to be the best diabetic that I could be. I anticipated that I'd be largely on my own, that I'd pick up a few useful tips among the keto scams and cinnamon cures. I was wrong, I was definitely not on my own.

If you arrived here via Twitter, there is a great chance that you already know about #GBDoc. It is a tremendous community, run entirely by volunteers who just want to learn and stay well as much as everyone else. I mention the hashtag often and I do promote the community when the opportunity arises. I don't run it or have any influence in what happens. I'm a volunteer, learning, trying to stay well and hopefully assisting others in the same.

I try to give as much as possible to my peers within #GBDoc because since day one I have been inundated with kindness. Sure, as with any community, there will be disagreements and people will come and go. Yet, the core of #GBDoc has remained and from everything I've read and learned, I believe the community has evolved into a more inclusive, community driven, place rather than the individually run entity it once was.

In the last six and a half years, I have met hundreds of community members in person. I'm very likely to meet hundreds more. Each time, it was a delight. I love to learn about others, to talk, to laugh and to share experiences. From the hundreds, I have close bonds with many people who are now incredibly good friends. If you enjoy socialising then #GBDoc can certainly improve that aspect of your life!

Let's focus on the direct impact that peer support has had on my health. In 2017, I was finger pricking and injecting and that was the extent of my T1D management. Today, I write this blog post as somebody who is using Hybrid Closed Loop to manage my diabetes. Essentially, an insulin pump is communicating with a CGM to make frequent adjustments to my insulin dose without my input, aside from entering carb counts and other very minimal-effort engagements (see the photo used for this post). If you don't have T1D, your pancreas does a similar job, but this is not an artificial pancreas. I'll blog more about HCL in a week or two. 

HCL is the latest development from my accessing of the peer support in #GBDoc. Before that, there have been many other examples of help from the community members. Items include:

- A donated insulin pump

- Many donated insulin pump consumables

- CGM transmitters

- CGM and Flash sensors

- Ketones test strips

- Glucose drinks

- Sweets, chocolates, lots of coffees!

The last one might not be hugely impactful on my diabetes management, but it helps and they were much appreciated! I didn't ask for any of those items. Various individuals took it upon themselves to offer their time, energy and money to help me. The physical items are one thing, the enormous amount of education is something else. There really is no better place to learn about T1D than from those who live with it. Every little snippet of info, every little trick, hack, guidance and signposting is a little bit more ammunition to go to war with. Over the years, I've absorbed it all. It feels like I've studied for a medical degree in some respects.

Of course, I do what I can to give back. "Pay it forward" is the often used term for a good deed. I won't list my involvements in diabetes related initiatives in this post. This post is about the others who do wonderful, kind, things for people without really realising the positive impact it can have. You are saving lives, prolonging lives, improving lives. I don't write that sentence flippantly. I truly believe it. You may never be officially recognised, but I see you. Thank you.

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Dexcom One CGM - In Review

It's been a number of years since I last used a Dexcom CGM. In 2018 and 2019, I used the Dexcom G5 followed by the G6 and my experience was "patchy" for various reasons. So, it was with hesitancy that I accepted the Dexcom One "Starter Pack" during my latest diabetes review appointment. It was offered to me following the sharing of my experiences of Freestyle Libre 2.

Firstly, how wonderful to have a choice of blood glucose tech. I know most areas in England and Wales are offering a choice of Libre 2 or Dex One yet many are still finding it difficult to access one or the other - mostly Dex One - at the time of writing this blog post.

The Starter Pack contains everything you need for 10 days CGM use - 1 transmitter and 1 sensor. You'll need to install the Dexcom app on your phone and create an account if you don't have one already. Then, you're ready to go!

You'll need to "pair" your phone with your Dexcom One transmitter. Pairing is a simple process, just follow the steps on your phone screen. Once you are paired up, you can insert the sensor using the single use applicator. By the way, be sure your phone is compatible with the CGM. Dexcom will have a list of compatible handsets on their website. 

The sensor applicator looks and feels a little like a computer mouse. There is one orange button to insert the sensor under your skin and a small protective orange strip to cover it. You'll need to snap that off before you press the orange button. You'll also need to remove the two slips of paper that cover the sensor adhesive area. Once the paper is removed, hold the applicator against your skin and press the button. Sensor inserted! Just ease away the applicator and dispose of it as best as you can. It's a pretty chunky lump, making recycling difficult. Some have suggested breaking it up with a hammer to make recycling easier. I think Dexcom could do a lot more to be planet friendly, here.

Before you go waving a hammer around, pop the transmitter into your sensor. Next, follow the app instructions to begin the warm up process. If you've never used a Dexcom CGM before, then get ready for a wait. The Dexcom One takes 2 hours to warm up so, maybe don't do this right before bed.

The warm up process was problem-free and BG values began to appear. The first few readings were pretty close to my actual blood glucose. "Great!" I thought, until my BG dropped so low that numbers became letters on the Dexcom app. However, I wasn't hypo. Things didn't get any better for a good 6 hours, throughout that time I remained outside of the hypo zone. I decided to let the CGM "bed in" and, erm, go to bed.

I don't know if it was just really tired from sitting in a box on my living room floor for a few days, but the rest seemed to do the CGM good! Fasting BG in the morning was very close to the Dex One number, which was also very close to the Libre 2 number (I'm wearing both devices at the same time). 

Heading towards 7 days with Dex One, I've become comfortable with it and I have begun to trust it. Compared to Libre 2, it has been closer to my actual BG for more of the time.... just! The difference between the two is very minimal for me. L2 is reading a little lower (it usually does) than Dex One, but not by worrying amounts. 0.5 mmol perhaps as an average.

Accuracy aside, the Dexcom One app is a very stripped out affair compared to LibreLink. It will offer some eA1c info via Clarity and some Time In Range data, but there is no place to leave notes and no way to screenshot the app. Read this in your best Nick Jonas voice - No screenshots? Really?! Some of you are going to suggest using third party apps and you're right. You can screenshot and note leave using different apps. However, I'm not a fan of unofficial apps when it comes to my data, support, security, yada yada. Also, the tech newbies don't want to be overwhelmed by having to install multiple apps to do things they could do with one app on LibreLink. I'm not a newbie, I'm just big hearted and I care about the people who are.

The app is my only gripe, really. Yet, it works and how often am I going to leave passive-aggressive notes about the sensor accuracy? Do I really need to screenshot my BG to encourage keto diet zealots to question how long I'll be keeping my toes with those numbers? Maybe not. I've drifted off track. My gripes aren't a big deal. They're little annoyances. The important thing is the CGM works well. At least, after the first 6 hours.... 8 hours if you include the warm up. Yeah, that first day is pretty annoying. I can accommodate that, though.

What else? 

- It's ergonomic. No sharp edges to catch on clothes, bed sheets, other humans, etc.

- It's simple to set up. Minimal steps and great on-screen instructions.

- Satisfactory accuracy vs Libre 2.

- 10 day wear isn't wonderful. That's 3 sensors per month vs the near 2 for Libre.

- 90 day transmitter usage is... okay... remember GlucoMen Day have rechargeable transmitters that last for 5 years.

- Waste could be better. That big lump of applicator, 3 times per month. Eeek.

That's about it. Soon, I'll need to make a choice for NHS purposes. Dexcom One or Libre 2. Which one do you use? Have you been given a choice?  

 If you enjoyed this blog and you'd like to support me over the time that I give to others, my online content, or if you'd like some direct support from me then check out these links:

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Diabetes Decisions

The Thinker

Life is an endless list of decisions. It can be as mundane as what socks we're going to wear today or something as serious as a relationship or job choice. Whoever you are, decisions are an inevitable part of life.

Diabetes isn't a decision, largely. I know Type 2 Diabetes can be avoided or delayed in SOME people but for individuals like me, with Type 1 Diabetes, it's not a choice. What comes after a diagnosis of T1D is a new life of decision making. Your old life decisions will still exist, of course but now you've got to find some extra thought capacity for the decisions that diabetes brings.

"180!" is the joyous cry at a game of darts, when a player scores the maximum. It's also estimated to be the number of extra decisions a person with T1D makes in a single day. Let's do some easy maths:

- You're a light sleeper and you manage 6 hours of sleep per night

- For 18 hours you're awake.

- You're making, on average, 10 diabetes related decision per hour.

- A decision every 6 minutes.

- 1,260 decisions per week.

- 65,520 decisions per year.

I'm in year 36 of T1D. Go ahead and pop those numbers into your calculator. Little wonder that I've started to lose a tiny amount of head hair.

Even as I wrote those numbers, I had to double check that it's right. It seems that it is. Of course, your diabetes may vary. I know that if you're sleeping for longer and using closed loop for your insulin delivery and BG management then your decision making is likely to be much less of burden on you. You're still making decision but probably a lesser amount. If you're struggling with diabetes burnout then your decision making may be vastly reduced or even nil.

It's not just the numbers, though. It's the magnitude of the decisions made. Each day, I average 8 injections of a substance that could easily result in my death. A mis-calculation is very common. That means a corrective injection or eating/drinking something carby to stop my blood glucose from falling too low. The latter being of my immediate concern but the former can also result in life altering complications and/or a shortening of my life. Those decisions to a non-diabetic or a person recently diagnosed must seem enormous and incredibly stressful.

They are.

Of course, the majority of T1D management is simply a persistent monotony. I once described it as 99% boredom, 1% sheer terror. That's because the decisions I make are mostly around what I need to inject to cover the activities and carbohydrates in my day to day life, needle changes (and lancets!), sensor changes, ordering prescriptions, attending appointments, giving up bodily fluids into little containers and handing them strangers... you get the idea. It's not exciting, thankfully! I'm pretty pleased with the boring. The last thing I want is an exciting chronic illness which might kill me.

Boring doesn't mean easy. I do the boring to avoid the terrifying or, at least, minimise the terror. I'm still here so I guess things are going alright, right now. 

There is hope! and it's about time that I put more positivity into my blog. Technology reduces the decisions and the burden of T1D. I say that with the strongest conviction. I don't "loop" and I don't "pump" but simply using a CGM has helped to lighten my load dramatically in the last few years. It seems that pumping and looping (?) is a natural progression for me and I have no doubt that those progressions will lighten my load further. Of course, I hope for a cure but I'm realistic. I'm 44 years old and that probably won't happen in my lifetime but I do think that technology will continue to advance and make the T1D decisions for me. Perhaps 180 will only be associated with the darts, one day in the future.

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