Contented

 

It's been over 3 months since I slapped my fingers around a keyboard and published a blog post. A quarter of a year seems like a long time. 3 months from today, we'll be in 2025 - a quarter of a century already gone! It seems like yesterday when the world was worried about the "Y2K bug." We survived, of course. Later, we survived conflicts, a pandemic, and a lettuce as the UK Prime Minister.

You're probably not here for an overview of the last 25 years, but I am going to talk about the last 3 months and how it's impacted my T1D. Then, a look at what the future holds.

In June, I wrote the post Changes in relation to what was about to begin - a new role in a galaxy far, far away from Diabetes. It's been fantastic. Several friends have asked "why the change?" and they enquired about the work. I did mention some aspects in the Changes post however, the change just landed in my lap. I did pursue the opportunity when it was presented to me, of course. If I didn't I wouldn't have been offered the job. The job? I write content. Some of you are really great writers with positions in the media and journalism. I can't claim to be that talented, although I do feel comfortable with the subjects I work on and the briefs sent to me.

So, how has that affected my T1D? A lot is said about how physical activity impacts blood glucose. That usually makes sense to me. Although, we're all different and I don't believe a "black and white" direction for advice is right in that area. Little is said about how mental exertion can move the line on a CGM graph. I've always been aware of it to some extent from previous roles, education, and just concentrating really hard on something simple like a family quiz. Mental exertion is undoubtedly lowering my blood glucose.

Right now, this recently rediscovered reason for a hypo isn't impacting me at all. Hybrid Closed-Loop is the techie friend that has my diabetic back. In addition, I work from home. Taking a break isn't an issue, allowing me to grab snacks, sweets, coffee, etc before a low becomes serious. Without the tech, the alarms, the suspended insulin, day-to-day work would be much tougher. 

Of course many of you don't have HCL. Maybe you don't want it or you're patiently waiting your turn to have it signed off. It's probably true that many of you have to deal with hypos at work - in an actual workplace, rather than at home. I have huge admiration for you in either or both situations if you're battling frequent hypos while trying to do your bit for society.

Greater tech access is inevitable on these shores. The constant push and advocacy from strong voices will undoubtedly open the doors for all with T1 in the coming year or two. I think that's a massive step in the right direction for diabetes care. It'll reduce instances of complications and offer a much better long term outcome for Type 1 Diabetics.

Do we (as T1Ds) need more? 

Yes, I know, a cure! Wouldn't that be lovely? I really hope for the best in that regard, but hope is all it is. The heart wants it desperately, the brain says to not give much attention to pipe dreams. 

The answer? No.

As tech develops, perhaps even a true "artificial pancreas" hits the market, then the answer will change. Until then, if you have the best care, medicine and tech, then that's as good as it gets. 

I do realise that HCL isn't for everyone for a plethora of reasons. I hope that where you are now feels like as good as it gets, or tech and meds advance soon for you to put you in that place.

Pipe dreams can become reality in time. It might be a cure, or it might be tech so advanced that it's almost the same thing. I have no doubt that one of those things will happen eventually, probably the latter. Hang in there if you're struggling frequently. 

When we get there, diabetes posts, communities, and content will likely drop off the radar in areas that no longer have the need for them. Perhaps if you've been paying attention, you'll have already noticed that decline beginning. In some ways it's a sad thing. 

There are so many great people with big hearts involved in diabetes socials, sites, charities, etc. As the years go by, as tech becomes our crutch, those entities will be less in demand. There will be no need for that type of content.

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Back To The Future

Great Scott! Or similar words have been exclaimed by me since the summer of 2023. The reason for such excitement? Hybrid Closed Loop. You've probably read some of my gushing on the subject and I continue to talk positively about it today because... well, sleep never gets old.

Prior to HCL, like many using the tech, I was using a pump and various types of CGMs separately and that was perfectly acceptable. My numbers were as good as they'd ever been; Great Time In Range & HbA1c. I felt no urgency to switch to closed loop.

As is often the case, talking to peers results in changes and it was an unrelated conversation that resulted in one kind person sending me a spare Dexcom G6 transmitter... then another from another person... and Anubis transmitters from two others. People within the diabetes community are really very kind. All that tech meant I could try HCL for a good while - over 6 months. So, I did.

There are lots of posts about how well things went for me in that period. Towards the end of my HCL time, I had my diabetes review with my consultant. He agreed that HCL was working well for me and that funding would be discussed at an upcoming meeting. Fantastic!

Of course, the tech expired as tech has that annoying habit of doing. I thought nothing much of it. I assumed it would be a seamless transition back to simple pumping and CGM use. It was. Reinstalling the old app was a pain in the neck because I can never remember usernames and passwords but, after some swearing and sweating, I managed to get set up again with Dexcom One. Quite soon, I realised just how much work I was putting in to this type of management compared to the recently ended Hybrid Closed Loop days.

The numbers were not looking great. *sigh* I thought I'll get through the life of the current sensor, then I'll buy a G6 transmitter and hop back aboard the Looping train. I noted the difference in managing Type 1 Diabetes through HCL vs standard pumping, on X. Peer support came to the rescue (again). Another spare G6 transmitter landed on my doormat just two days later. The #PayItForward movement is a remarkable one. My donor would not accept any reimbursement for postage. Blessed, I promised to donate something to my favourite diabetes charity - Action4Diabetes as my own Pay It Forward. Of course, if I'm ever in a similar position to my donor friend, I will do the same thing for others. 

So, I'm back in the future! and over the last few days, the numbers are already proving how incredible the technology is once again. When just pumping and using a CGM separately, my average blood glucose was 8.5 mmol/L. I know that's not terrible, really. Yet, I could "feel" it. I was sluggish and just... blunted. Finding the right words is difficult. Needless to say, I was not myself.

And after a few days in the loop?...

Already, a significant difference over the previous 2 days. I think the numbers speak for themselves. You've probably read enough gushing from me, by now.

What happens next? I'm going to relay my experience and thoughts to my diabetes team. To move to HCL, then move off it, then move on to it again seems a little unusual and they may benefit from hearing about what has happened while looking at the data.

Also, and I've said it many times, I can never repay those who have been kind to me over my diabetes in the last 7 years - since opening up and talking about it online. I do try through various means. Some of those don't sit well with everybody and that's alright. Even the kindest will meet opposition and anger and jealousy. Do good things with good people. You'll usually finish up sleeping soundly, especially if you're using Closed Loop! 

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Hybrid Closed Loop - My Thoughts

The future has arrived! Yes, I know many of you reading this will have been managing your diabetes with Hybrid Closed Loop for a while now and that it's not exactly new news for you. 

At Dad Towers, I've been hesitant to take the "next step" from insulin pumps and CGMs to the "all in one" of HCL since I began using an insulin pump in 2021. I didn't feel the urgency to change what was already working well for me, I didn't feel inspired to learn about closed loop, HCL, AID, APS and host of acronyms which were, to be frank, a bit of a turn off. I write those words as somebody who is very pro-tech when it comes to diabetes management and as somebody who understands most of what HCL means. Still, in the last couple of years, I felt in no hurry to try it.

As is often the case, conversations with peers, particularly well-meaning peers within #GBDoc, resulted in the change. As is also often the case, I've done this without the "blessing" of my consultant or an agreement with any of my HCPs. We'll talk about access later on.  The kind-hearted folk within #GBDoc have taken care of me on so many levels in the last 6 years, so I suppose it's not really a surprise to have transmitters, sensors and even different CGMs sent to me to try out. It's not a surprise, yet my heart bursts with gratitude when others offer the time, energy and often money to support me. I'll do what I can to pay that forward, of course.

Right, let's get into it; HCL, is it any good? 

Firstly, take a look at the image above. That's a screenshot from Dexcom Clarity. A nice splattering of green days and impressive time in range. For the system I'm using (Control IQ via Dexcom and T:Slim) those numbers didn't take long to achieve. The first day or two on HCL was fascinating to watch. My pump was constantly adjusting my basal rate, administering little boluses, reducing basal, suspending insulin, etc. Basically, it was micro managing everything and doing so for 24 hours a day. I love a little micro managing action myself, but even I can't do that for 24 hours a day. Impressive stuff and the results were almost immediate, lines have been flatter, spikes less spiky, hypos less severe, and I imagine my next HbA1c will reflect this improvement in management...

...management? Yes, you're still the boss, you can still administer a dose, you still need to carb count and pre-bolus for your meals & snacks. You're not a complete passenger with HCL but, if you're anything like me, you'll need to learn to let the machine do it's thing and trust in the tech. 

I've put HCL to the test a few times, including early on when I purposefully carb counted 50% lower than the meal actually contained. I expected a spike and it did happen, yet HCL sprung into action and upped my basal rates quite dramatically. It caught my purposeful error and brought me back into range within an hour or so. Wow!

Recently, I spent a few days away on a short break. That included a day at the beach. Walking and warm weather is a recipe for a hypo for me, but I thought I'd put HCL to the test again. I left my hypo treats in the car and armed only with a debit card to purchase food and drinks from a little cafe, I set about wandering around the sands... some running around too, with a Cocker Spaniel enjoying the new environment to sniff and explore. I kept an eye on Control IQ, which displays my blood glucose alongside exactly what's going on insulin wise. From a starting BG of 7.6 mmol/L, things dipped to 5.8 mmol/L and at that stage my insulin was suspended by Control IQ. Trying to not worry, I headed to the cafe to buy a sugary drink and as I cracked open the can of brown fizz, my BG was back to 6.4 mmol/L. No input from me, closed loop did all the work.

Of course, I'm not suggesting ANY level of exercise won't require some input from you when you're using HCL but, for me at least, walking around a beach for a few hours wasn't the huge problem it once might've been. And I definitely don't recommend leaving your hypo treats behind - That's just silly. 

However, that's a tremendous thing about closed loop; it reduces the worry, the decision making. You can just crack on with whatever you need or want to do and if any problems arise they're likely to be minor ones that need minimal input from you. 

It's not a cure. It's definitely not an "artificial pancreas". What it is, is an advanced way to manage T1D. Now, the only issue for me, as it was with pumping, will be to convince my consultant that HCL is right for me. That means obtaining Dexcom G6 funding.... or does it?

Whaaaaaaat?

Well, the thing is, Dexcom One sensors will work perfectly well with G6 transmitters. The sensor codes have been "hacked" and a list of Dexcom One code: 2222 = Dexcom G6 code: 4444 (as an example) is freely kicking around on your Interwebs. So, essentially, I only need the transmitters while I'm prescribed Dex One sensors. Conversations are to be had! 

Finally, you've probably noticed that Partha & co. have been working hard on making HCL accessible in NHSE. There'll be criteria, and from the outset it looks less stringent than the insulin pump criteria of old (7.5% A1c vs 8.5%) so, that's a good thing. I imagine access will be more relaxed as the next few years roll by until we reach a point where all with T1D can access closed loop in England and Wales. Perhaps that's called the Libre Point? Remember in 2017/18 when access to Flash was the big issue? Here we are, 5 years later and still not cured, but access to that tech is no longer a problem.

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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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Being Heard In Diabetes

A curious title? Perhaps. Hang in there and allow me to explain. This is going to be a positive-in-tone blog post about our voices as diabetics and how today, in 2023, things are far different and far better than they were only a few years ago.

Living with a long term condition, such as diabetes, is a huge burden for many to shoulder. The nuances make the burden different from person to person and in some cases individuals report no burden at all. It's a long, varied, spectrum - the burden of diabetes. What many have spoken about and in some cases shared experiences of historical events is that as a patient they rarely felt listened to by their HCPs. It's something I can relate to and also something that I've noticed a change with.

When I was a lad, it was all trees and fields as far as the eye could see. And a hospital or two. At one of those hospitals, I attended my diabetes outpatients appointments every 3 or 4 months. They were terrible. From threats of visits to the "amputation ward" to a single focus on the numbers in my blood glucose diary (most of which were lies anyway) I never felt heard, never supported and was once described as "an angry young man". Little wonder, you might think, that I decided to put my head into the sand and as an older teenager and young adult I would avoid attending clinic. 

Let's jump back to today; less fields and trees but still a hospital or two - a different hospital or two in a different area. What's different? Well, the general attitude of my HCPs is outstanding. Despite what you may have read, I'm a 46 year old adult and my treatment in the last few years has been excellent, respectful and kind. Compared to my treatment in the 1980s and 1990s it is a different world. I feel delighted to have this much improved care but also a little sad for younger me who went through years of very poor care. 

It isn't just in the clinic environment where things have improved. As diabetics, even those recently diagnosed, we are seen as experts of the condition. It's probably right to suggest that some know an awful lot more than others but eventually nobody will know more about your diabetes than you do. It's very respectful to view the person living with the chronic illness as an expert and it sets a great tone for communication from then on. As experts, our views and experiences must matter. You may have noticed many conferences which focus on our lived experiences and our views on diabetes and long may they continue. As we share, as we listen, we help others and we help ourselves. 

You may have also heard of the draft guidance for Hybrid Closed Loop, recently. Our views matter there! NICE are welcoming comments until 5pm UK time on January 31st - soon after this blog is published, so head over there and let NICE know where the guidance for HCL should be focused. 

Social media has become an incredibly powerful way to be heard in recent years, too. Diabetics from around the world share experiences, knowledge and their struggles. Many have cited the #GBDoc community on Twitter as transforming their diabetes for the better. I include myself in that as you probably know if you've read much of my blog before. Because of being heard by my peers, by HCPs and by some diabetes businesses I am able to live a far less burdensome life than that of just a few years ago. I'm also able to dedicate some of my time to helping others to achieve their diabetes goals. 

Although I live with various conditions, Type 1 Diabetes has dominated my time and energy for almost four decades, but never to such a small degree as today. Things seem set to continue to improve in most areas of managing the condition, too. Technology is advancing and even the cumbersome NHS are embracing it. Peer support has been given the recognition it deserves. The diabetic voice is a loud one and heard in almost all circles. Of course, there is much more which needs to be done to provide fantastic care to everybody living with diabetes in every country and not just in certain areas of the United Kingdom. 

There is never a great time to be a diabetic but 2023 is certainly a better time to be living in the UK with a wonky pancreas than most years gone by. Let's keep talking and keep pushing for the very best care for everybody, regardless of type.

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