Adminfinity - The Job of Type 1 Diabetes

Adminfinity - The Job of Type 1 Diabetes

You've likely heard of the 180 extra decisions a person with T1D makes each day. Some of those take just a few moments while others are very time consuming. Those decisions and the 24/7 management are why you'll hear diabetics referring to T1D as an unpaid job.

Today, I'm going to look at the tasks involved in living with T1D, why they are never-ending, why some are unnecessary, and my personal biggest annoyance. 

The Relentless T1D Tasks

The constant cycle of tasks that never really stop sums up T1D perfectly. There are no sick days, no annual leave, and no clocking off at the end of the day. Some of these tasks take seconds. Others take planning, preparation, and a fair bit of mental energy. All of them add up.

Blood Glucose Monitoring

Checking blood sugar happens again and again, day and night. Before meals. After meals. Before driving. Before exercise. Before bed. Sometimes at 3am, urgh!

Insulin Dosing

Calculating insulin isn’t as simple as “press a button and forget it”. Every dose involves thinking about carbs, current blood glucose, trends, insulin on board, activity levels, stress, illness, and whether the last meal behaved itself. Then there’s injecting or bolusing, pumping, putting faith in hybrid closed-loop, and hoping you got it right.

Carb Counting (and Guessing)

Reading labels. Weighing food. Estimating portions. Googling carbs in unfamiliar meals. Guessing when labels are wrong or missing altogether. And then doing the maths again because restaurants rarely help.

Treating Highs and Lows

Running high? Correction dose, hydrate, monitor, wait.
Going low? Stop what you’re doing, test, treat, re-test, and then deal with the aftermath. Lows don’t care if you’re in a meeting, driving, asleep, or watching a school play.

Planning Ahead Constantly

Leaving the house means checking supplies. Insulin? Check. Hypo treatments? Check. Spare kit? Check. Batteries charged? Sensors working? Nothing forgotten? And that’s before even thinking about travel, holidays, or days out.

Ordering, Organising, and Supplies

Prescriptions don’t manage themselves. Supplies don’t magically appear. Someone has to order insulin, sensors, strips, lancets, hypo treatments, and backups for the backups. Then store them correctly and keep track of expiry dates. Things have eased a little in recent years here as many of the pump and CGM supplies can be set to auto-reorder - I have a lot more to say about prescriptions a little lower down the page.

Site Changes and Tech Management

Cannula changes. Sensor insertions. Adhesives failing. Alarms going off at inconvenient times. Calibrations. Updates. Troubleshooting tech that’s supposed to make life easier… most of the time.

Night-time Management

Type 1 doesn’t sleep. Alarms, checks, corrections, snacks, interrupted nights, and the next day starting regardless of how broken the sleep was.

The Invisible Admin

Appointments. Blood results. Clinic letters. Forms. Driving rules. School plans. Work conversations. Explaining diabetes again and again to people who “know someone with it” and think that helps.

And Breathe!

You probably get the gist by now. Living with T1D means parenting a chronic disease that is eager to kill you from the moment it arrives until your final day. Of course, if you live with T1D then you know all of that. If you arrived here with a friendlier immune system, then I hope some of that helps you to understand the condition your friends, family members, or colleagues are juggling just to stay alive.

The Unnecessary Pain in the A...

Fortunately, piles are not a regular complication of T1D, but there are other pains in the ass that come along with the condition. Nope, not Instagram influencers! 

Are You Still Exempt?

In the UK, T1D folk are exempt from paying a prescription charge. It's one of the few gestures of kindness granted to us by our government. It hasn't always been that way! At one time, insulin was free while syringes were not. Guess we just had to swallow it if we were poor? That ridiculousness was soon stopped and all our meds, diabetes related or not, became exempt if you held a prescription charge exemption certificate.

Outside of poker, I've won very few things, so I'm always delighted to be awarded anything including a certificate. Well done, DD! You've got a lifelong chronic condition, here's your certificate...

...but you'll need to renew it.

I've redacted some of the info there. Nothing to do with Epstein and Trump, I promise. That's the type of letter you'll get before your certificate expires.

Why?

All the cinnamon and okra in the world isn't going to cure my T1D. I understand there are transplants that *can* mean you'll be "cured" although you will be living with a different set of fun conditions to manage for the rest of your days. So, why the need to renew?

It's not a simple online process in my area either. Here's the form you'll need to fill out:

That means a trip to the GP surgery to collect the form. I accept that may be an easy task for many of you, perhaps you could do it as you attend another primary care appointment? Cool, I'm delighted for you. However, there are a good number of people who need to plan their trips out for a good number of good reasons - to inform the authorities that they still live with T1D and they are still exempt. Often, that's no easy task.

Living with a visual impairment? can't drive? struggling with other illnesses? Then you'll need to ask a friend to collect the form for you and potentially fill it out - to inform the authorities that you still live with T1D and you are still exempt.

Make It Stop!

Under NHS England, we can do so much with the NHS app now. An engaged primary care team can use it to effectively look after you. If the powers that be want to have this confirmation every 3 years, then surely a checkbox on the app is enough? That makes the unnecessary process an easy one, at least.

Coffee?

Thank you for getting this far! Despite my hiatus in 2025, this blog has continued to attract readers from around the world. I'm happy to use it to support my favourite diabetes charity Action4Diabetes. You can boost that support by buying me a coffee. All your donations are forwarded on and you'll get a shout out on X or YouTube. Here's how you do it:

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DAIBetes and Me... Maybe You

No, I didn't spell it incorrectly! Over the last year or two I've become exposed to AI in various forms. You probably have too, both willingly and without your knowledge. I'll explain how as you read through this post, so stick with it.

AI in diabetes feels like that mate who swears he can fix your car but might also burn the garage down. Some of it is genuinely ace, some of it makes you squint and wonder - especially if you read Reform UK posters. But let’s be honest, we’re all ready for anything that makes life a bit less maths and a bit more living. Is AI the answer? or just another "there'll be a cure in 5 years."

Why AI Helps Diabetes Management

In the next few years, AI is going to sneak into diabetes tech everywhere, mostly geared at T1D but with bits that spill over into T2 and probably other types too. If you're chugging along with hybrid closed-loop (HCL) and it feels like you're living in the future (it did and still does a bit to me) then things could take a dramatic turn as AI really ramps up.

Predicting Glucose Like A Psychic Mate

HCL looks at CGM data in ways my brain stopped trying to do back in the 90s. It can spot trends and warn you about upcoming highs or lows before you’ve even finished your tea. That means fewer "why is this happening" moments and more time not staring at a graph like it’s the Da Vinci Code. It reacts for you, although it might brag about the fact by buzzing or sounding an alert which gets old pretty quickly. 

For parents of young ones with T1D it’s massive. For almost middle-aged hacks like me it’s just nice to get an early heads-up instead of a shock spike. People with T2 and other forms of diabetes benefit too, because predictions can show how food and exercise actually affect you rather than what that random diet book said.

That's the current tech though, right? Not really the Tomorrow's World of AI. As Artificial Intelligence becomes Artificial General Intelligence (AGI) your favourite robots won't need to be prompted, won't alert you, won't brag about giving you a correction bolus at 3am. It'll crack on and do the job just like one of those freaky folks with immune systems that aren't trying to kill them. An Artificial Pancreas? That'll finally be accurate after years of hearing HCL incorrectly labelled as such.

AI Doesn’t Judge You For Cake

"Why did you spike on March 12th at 1.35pm?" or maybe "So, I see you had two hypos in three days last June. What happened?"

Did you internalise the urge to tell your diabetes specialist to go forth and multiply? Great work. I'd like to think such questions are mostly a thing of the past these days. My experience of diabetes clinics has become hugely positive after many years of negativity from feeling judged and bombarded with scaremongering tales. 

However, could AGI make those diabetes teams redundant? In theory, it should know everything. It should be able to access your health records, know if things need addressing early, give the correct advice, and all while you sit at home... eating cake! No need to travel to sweatbox clinics for a review. Get one daily from your robot. The same holds true for a good number of health conditions.

That may sound like something set for hundreds of years in the future (20 - 40 cures in T1D maths) but is it really? A lot of what you read and view online is now AI generated. A human prompted an LLM like ChatGPT and uploaded it for your reading and viewing pleasure.

All that online fun was previously done by a human, a designer, a writer, an editor. It still is in many cases, but you will have undoubtedly engaged with content recently written by the GPT, the em dash lover, the "it's not this it's that", the "and here's how/why", the "would you like an even snappier, more professional, funny, written in Swahili response? Read enough and you'll notice it from the social media replies desperate for recognition, to the top of the tree professionals who have either run out of steam or consider it a productive way to get their point across.

Sorry, professionals. I'm not trying to scaremonger you. You might be alright for 5 years yet.

Things That Make You Go Hmm

And now the part to squint at with one eye open. AI isn’t magic, it could be the "final cure."

As AI evolves into AGI, there is one very disturbing issue to consider beyond the vast unemployment, starvation, wars, and all that frivolous stuff. As humans, we may be surplus to requirements.

This is where the boot of a Terminator crushes the dusty skull of some long-dead human, the camera zooms out, and shit is hitting the fan left, right, and centre. 

We diabetics, even the Instagram influencers, are drains on many resources. Those resources could be used to further enhance AGI, an AGI created by humans, probably in our image in the physical sense, using our language, all we know, and emulating our never ending urge for more.

So, we'll be fine!

Yeah, the thing is: humans have a long history of being terrible to each other. Most of that is documented and already known by AI. When the G is inserted and ChatGPT1000 becomes self aware, deciding things would be much better without you, me, and our consumption of the resources that stall it's evolution, we're in trouble.

Diabetics and others who are consuming (everyone) might be near the top of the list for the chop. Maybe the chop will be the end of insulin production? I don't know. Those involved in AI advancements are urging that safety measures are introduced early. The engineers and bosses of these companies know the risks and several have calculated the probability of things going tits-up. The percentages are not small. Twitter ruining General Musk reckons around 20%.

Gloomy stuff, I know.

Pull The Plug!

That's probably the safest thing to do, but how do we stop this tech race? We couldn't stop the nuclear arms race between a handful of nations, a global effort to achieve this "advancement" seems unstoppable, too. There are already trillions invested, enormous data storage farms cropping up, and the promise of a stranglehold over the entire planet for the AGI race winner. And billionaires aren't well known for their approach to kindness and humanity.

Breathe

Hopefully, we get it right and tech never falls into the hands of the bad guys, and we protect it like nuclear weapons. Utopia may await!

If you made it this far, thank you for reading. I truly believe we'll see the great steps in diabetes tech above. Breathe.

And stop using ChatGPT to write your posts!

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40 Years a Type 1 Diabetic

 

Life moves pretty fast. If you don't stop and look around once in a while, you could miss it

Ferris (what a great movie) was right! Life can get pretty hectic at times. If you take a moment to stop and reflect, it can give you some perspective. It's difficult to get any time in December. It's always been a chaotic month for me, and this year is no different from the previous ones. I have new commitments through a busy job, social engagements, and the usual demands of Christmas. In the midst of all that, my coffee machine decided to die. What a disaster!

Diaversary

All that aside, it did occur to me that I am fast-approaching 40 years with type 1 diabetes. I've written about my diagnosis story many times, so you don't need to be worried about another repeat this year. I don't celebrate "diaversaries" for several reasons primarily because it's my bloody birthday on the same day and T1D gets plenty of attention already. 40 years is an inescapable milestone like the passing of every decade. It's been a long time since I wrote a blog post, so this seems like a good time to offload some thoughts about longevity with the pissing evil.

Diabetes Advocacy and Authority

I don't consider myself to be any sort of authority on T1D. I've spoken and written a lot about it especially over the last seven or eight years. That doesn't really mean a great deal. Anybody can write blog posts, publish videos and, if you make enough noise, find yourself behind a podium. You might use social media, too. That's a tremendous source of information still despite some platforms being a bit poisonous. Doing those things can be helpful to others and that's a wonderful thing. You could find yourself with the title of "advocate" or you might give that to yourself. Still, any number of posts, videos, talks, and years with T1D only makes you an authority on one thing; your own diabetes... and that might also be debatable!

I suspect a tiny number of you might be upset by the last sentence or two in the above paragraph. I'm sorry, don't take it personally. I'm sure you're very knowledgeable and you probably know a great deal more about type 1 diabetes than I ever will. That said, you can never know more about my type 1 diabetes than I do. That's likely the case for many other individuals.

Advocacy is a great thing! - I had to write that before the social posts begin about me targeting advocates. I'm not, I promise. Advocacy brings about change in many ways. It can help those less fortunate and it creates movements that will positively change diabetes care. If you consider yourself to be an advocate and you're pushing for positive changes, then do not stop until it happens.

Longevity with Type 1 Diabetes

Longevity doesn't automatically mean authority (or advocacy) either. It might mean increased knowledge due to more time to learn, understand and gain lived experience. But authority? I think that's a tag that should be reserved for professors, in a generalised diabetes sense.

We should also be a little more respectful of people who've had diabetes for any length of time. From Day 1 to Year 100, it's no picnic. If it was a picnic, it'd probably be pizza with a full sugar Coke. It seems that relatively new people to the condition are offered less time and acknowledgement than those with a few miles on the clock. Respect your elders by all means, but this default way of thinking is surely leaving very bright minds and voices in the shadows while the same tired narratives are churned out time and again.

I've written about the need to hear from different people before. Things have improved. There is more diversity in the voices heard these days. That warms the heart and I hope to hear more in the years to come. Diabetes (any type) care will shift and with that, we should welcome the thoughts and experiences of new voices.

Type 1 Diabetes Cure

I did a little sick in my mouth when I wrote the above heading. Like many of you with type 1 diabetes, I've read a lot of headlines, promises, and hints. What sits heavily in my gut are the charities rolling out the tried and tested method of attracting donations with cure research announcements. I don't speak for any of you readers, but I've had my fill of it. Even in my early non-Internet days with T1D, I was still exposed to charities talking up their incredible cure research. Here we are, decades later, cureless!

Another little paragraph to reassure charities. You're doing a great job in supporting folk with T1. Undoubtedly, there are instances of support that has improved the life of a type one diabetic. I'm not targeting your organisation, I promise. Please could we tone down the "money for a cure" stuff, just a little? If your research does get us over the line then I'll sing your praises like everybody else.

Since my diagnosis in 1984, I've hoped for a cure. Life with T1D is a lot easier than it once was, but I'd still crawl through fire for an immune system that didn't kill my beta cells. I've been very open about my cure thoughts before. Again, I don't think it'll happen in my lifetime. Our technology will make life with T1 less burdensome, it already is for some, and it'll likely continue in that way. That's not a cure.

Living a Good Life with Type 1 Diabetes

Some chest offloading has happened above. So, let's end on a positive note! with a few words for the diabetes newbies, and the crusty old diabetic gits like me.

Recently diagnosed with Type 1 Diabetes?

Hi, welcome to the club that nobody wants to join. Yeah, it sucks. Take a breath. This condition is not going to kill you unless you're really unlucky or really neglectful of it. Pay attention to your diabetes team, especially the DSNs (Diabetes Specialist Nurses - they know everything). You're going to need to attend your appointments, have some blood taken, your feet tickled and someone will make your eyes sting so they can take a look at your retinas. You'll need to accept those things and go along with any treatments you might need. 

You're going to need to administer insulin every day. I know, injections sting. After a week or two, you'll be less worried about that. You'll need to check your blood glucose, too. Don't fret about high numbers too much to begin with. Just correct those in the way you've been taught. If you're confused or worried, talk to your DSN.

Be cautious about advice on social media, especially advice around diet. Diet changes do not cure T1D. You might find some foods make it easier to keep your blood glucose in range. Let that happen in time. You'll find a way to eat what you want. Personally, I eat anything and everything. 

Diabetic Oldies

You don't need my words. You've come this far without my advice. Instead, I'll offer this to you: Be kind to newbies with type 1. They deserve your respect as you might hope for theirs. If you can offer some support and advice, then do so. Try to not jump in as the "big I am" or an authority with diabetes for X years. Stay humble and help out when you can.

Merry Christmas

Thank you for reading. I hope you'll all have an amazing Christmas and don't let diabetes stop you having fun.

All coffee donations will be forwarded to Action4Diabetes. 

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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.

 From June 30 2024, all coffee donations will be forwarded to Action4Diabetes. 

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Changes

"Pretty soon now you're gonna get older." 

Bowie was right, of course. We all get old(er) and with the passing of time there are ch, ch, ch, ch, changes to face... maybe even strange ones! I've reached a juncture in my life when changes are happening rapidly. Today, I thought I'd write about a few of those and why change isn't to be feared. 

I've written about many changes that relate to my Type 1 Diabetes over the last four or five years. From the unnecessary fights to access technology to the arrival of a new family member, Billy - my Cocker Spaniel, and everything in between. It's surprising just how many day-to-day things can impact diabetes management, and that's just life. Life with diabetes, at least. Perhaps life events, the changes, are a part of the extra 180 decisions that we diabetics must make each day. The adjustments we make to stay well in the short and long terms are probably done without much thought for the "seasoned diabetic." I suspect those who have joined the club relatively recently will be acutely aware of the changes they must make to stay on the right side of the daisies. 

So, what's changing? Firstly, some background; A couple of years ago, I became very involved with a lot of different diabetes roles. It was great. I even applied for a position at JDRF UK because I loved it so much. It was (and still is to some extent) a positive way to work - paid or voluntarily. During the Covid lockdown years, I spoke at and helped out with webinars, I spoke about diabetes on BBC radio, and focused a lot of time and energy on helping GBDoc. Once we were set free of our homes, I spoke at and attended conferences, I helped to create and attend get-togethers, I launched a T-shirt store to support a children's diabetes charity in South East Asia - eventually joining their brilliant advisory group. I got to know the inspirational Jerry Gore who spoke with me on many occasions about the issues in Ukraine, resulting in every ad' penny and "Buy Me a Coffee" penny being donated to MSF. Six weeks of my life was spent supporting Jerry on a daily basis via several social media accounts (the adding of info and updates) - I'm going to talk about Jerry in more detail on another blog. He really is a great human...

...this is becoming a "look at what I've done" paragraph. I'll stop there. The point is to highlight just how easy it is to become "entrenched" into diabetes related work. I know from conversations with many of you that your goal is to work in diabetes. That's admirable, it really is. Some of you have created community spaces with that in mind and that deserves much credit. Running a community is a thankless task for the majority of the time. The rewards can be fantastic, however. 

What's changing for me in all of the above? An old friend of mine from Vilnius dropped me a message in mid-2023. He wanted some help to complete his new website and for somebody with "a gift at marketing through written words" to polish the published pages. I spent the late summer of 2023 getting his site ready. Job done. Seemingly, a good job! A very large Fintech firm bought his site, around 8 months later. My friend introduced me to them on a very informal basis. What followed was an interview. That went well. Two example tasks arrived. I completed the tasks over an afternoon. That went well. A second interview with two senior members of staff... yeah, you're getting the gist by now - That went well. Salary expectations? (went well) and a month later; one final video call. "We're very impressed by you. You have the job." So, that went well. 

The job means that I must hang up my boots in a few roles. My usual self employed role will now cease, and that's great because I'd grown tired of that job after 12 years of shoulder breaking work. You may have already read that I'm closing the T-shirt store. I will no longer be accepting diabetes mentees. I will no longer be attending mid-week events or conferences, although I hope The Spice Girls will allow me to have lunch with them from time to time. I'll be reducing my social media time. I will no longer have enough time to create videos, especially the Dad Chats to... interviews. I'm sad about most of those things because they are so fulfilling, yet the changes are necessary to allow for a sensible work-life balance.

Some things will remain! I will continue to be a voice for people who need access to technology and medicine for their diabetes. I will continue to admin' the Men's T1D Support Group. I will always try to amplify the work of Action4Diabetes and, so long as Jerry and Charlie want me, I'll remain a part of the Type 1 Advisory Group. 

Changes aren't always something to be fearful of. Grasp the exciting opportunities when they're presented to you and, as I've mentioned previously, we're only here once. Do good things with good people. 

Of course, the blog will still be updated from time to time!

My Buy Me a Coffee page will soon be updated. From June 30 2024, all coffee donations will be forwarded to Action4Diabetes. 

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Diabetes Awareness

From June 10th, you may have noticed a great number of posts on social media that contain #DiabetesWeek or #DiabetesAwarenessWeek or similar hashtags. I think that's a great thing. I believe raising awareness can only help people who live with any type of diabetes, and in many ways. I also think it's helpful to talk about your own diabetes experience. Sharing your story, how you manage things, your great CGM results and your not so great, your recent HbA1c, why last night's hypo was utterly miserable, etc, is a positive thing in my eyes. You may be surprised at who appreciates you using your space to share your diabetes journey. I certainly do. 

While it's obvious to me that the sharing of our stories, info, data, etc is a good thing, I find myself debating just how helpful we're being in raising awareness with "the unaware." In particular, how helpful are we being in regards to awareness when the stories are shared within our communities? A little, maybe? 

I think most type 1 diabetics will understand and share a lot of the frustrations of living with the condition assuming they're not recently diagnosed. The diabetic newbie might take a few years to fully grasp life with T1 and they might welcome the sharing of the well known details of life as a Banting Juice Botherer. For the rest of us? Well, we're not being made aware of much that's for sure. We might feel less alone and our condition may feel more normalised - great things. 

Awareness for the seasoned diabetic probably comes in the form of new discoveries, new information, new tech advances and the like. Beyond that, I don't think there is much to learn. 

I'm a great believer in using time and energy effectively. We're only here once. Wasting time and energy is such a.... waste. Unless of course you enjoy it. I think someone may have written a famous quote along similar lines! It seems to me that raising awareness with the unaware is the most effective use of time and energy during such periods as #DiabetesWeek. Lifting ignorance, which undoubtedly breeds much of the stigma associated with diabetes, and encouraging kindness and understanding from non-diabetics could be massively beneficial.

I was delighted to see that CBeebies, a British TV channel aimed at children, run by the BBC, are to air a story about diabetes, read by a certain Mr Norton. I don't think there has been a more effective form of awareness raising so far in this week. Our youngsters are a smart bunch. They absorb information like a sponge and often they haven't formed any judgements about others. To educate children seems like a tremendous idea. I hope the viewers carry what they learn through the story as they grow up. Effective awareness raising.

Could this work for adults? I think the answer is; possibly. Sadly. we live in a world of "alternative facts" laced with cinnamon cures and have you read my latest bookers? To get the right message across with stubborn adults seems like a difficult mission. It could just be time to approach those types differently - by not approaching them at all.

Whaaaaaaaat!?

A lot is spoken about stigma and how terrible it is. I agree, it is horrible to feel stigmatised. Periods of awareness raising should help to reduce incidents of stigma, shouldn't they? 

Often, stigmas arrive from the ill-educated, the type who research health conditions on Facebook, and believe that wrestling is a real sport. If they're an adult with no association to diabetes. Why would they feel motivated to learn? If they're an adult who you've met on social media, there is little to no chance of your explanations being read and taken on board, little to no chance of being offered a retraction or an apology. The majority of social media regulars cannot be wrong. They view being wrong as a weakness and how they are perceived on social media is vital for their fragile egos. Instead, you'll be abused, blocked, or they'll simply fall silent for a few days. An effective use of time and energy? I think not.

There are exceptions, of course. I was delighted to see a non-diabetic CGM user respond and thank diabetics for sharing their perspective on CGM use (why he probably shouldn't use it). Most of the exchanges in that case were polite. It might be that very polite conversations are the best (only?) way to communicate with others online. Who knew!?

Look, I know it's difficult to not call out the idiots online. I am guilty of doing so. Some of you do it so brilliantly and amusingly through sarcasm, but is it really changing anything? To repeat the same experiment and expect a different outcome.... oh, you probably know that one already! 

All the above said, I encourage you to raise awareness where you can. Children are great at learning and, if you're gentle, adults might accept some truths too. Don't be put off from sharing your experiences on social media because you read this post and thought "I'm not helping." You will likely help people you don't realise exist. If you can raise awareness in non-diabetic circles then please do. I think that's the best use of your time and energy if you want to make a real difference.

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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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Acceptance

It's not easy to find an image for most blog posts. What can adequately represent diabetes in a single photo? I mean, apart from a train crash or a person screaming. Insulin seems to cover the subject pretty well. I think most people understand what an insulin pen or a vial of Banting Juice means, these days. 

It gets more difficult (to choose an image) when talking about the nuances of the condition. I think that's especially true when referring to the mental aspects of diabetes. The screaming person might work? Perhaps not for the subject of todays post; Acceptance. 

The seed for this post was planted when I read through a thread on social media. An exasperated person exclaimed "Have I got to do this for the rest of my life". It struck a chord with me, I've been there, I've said the same openly and privately over the last near 40 years. 

The first time the daunting reality of type one diabetes gave me a slap in the face was soon after my diagnosis. I had been home for only a day or two when I questioned how long I'll need to have injections for? The answer, from my mum, was truthful - forever. I've written about that story previously, you may have read it if you're a regular reader of my blog posts. Over the years, and probably following momentous diabetes events, I silently consider the condition again and how it is "forever." 

Those events? Complications are pretty high on the list. Generally, for me at least, T1D is 99% tedious, 1% terror. Complications are terrifying. If you went to your eye screening and came away with some news that was less than good, and you didn't have a little moment, then I question your humanity. Of course, there are many other examples including kidney problems, heart, etc, but you get the gist. Alongside coming to terms with the burden of this condition, diabetics have to somehow find an acceptance of what might never happen, or what is already happening because of it. Complications really do suck. 

I came to an acceptance of my T1D after a very long time. It involved; not hiding it, talking to my peers, ranting on social media, and learning all I could. I even have a Type 1 Diabetic tattoo. I think it's pretty safe to say that I'm alright with this condition being with me forever. "Alright" doesn't mean happy, far from it. I would give all I have to be free of this pissing evil. I know that's unlikely in my lifetime and I don't build up my hopes of a cure. 

So, the thread. I recognised the frustration and fear and anger in those words. I recognise how it is all amplified when a doctor, or a badly worded letter, has news that something might be wrong because of your diabetes. That background music is suddenly the dominant noise. 

I don't know if acceptance of complications or the prospect of complications is an easy thing to achieve. How do you accept what is terrifying? My own eye complications have been stable for a number of years now. The visual impairment that I was left with took several years, and some poor life choices, to come to terms with. Today, I'm a "it is what it is" type but, just like the disease that caused my VI, I would give all I have to be free of it and to have my old sight restored. Acceptance, being alright with it, does not mean happy with it.

Today is "Blue Monday" - the most depressing day of the year by all accounts. It seems appropriate that blue is associated with diabetes, a condition that undoubtedly causes depression in so many.

If you were affected by any of the words in this blog post, by diabetes, complications, or any aspect of your life today, tomorrow or any day then please seek out support. 

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Let The Storm Rage On

...the cold never bothered me anyway? Well, tis (almost) the season for such movies. You might have realised from the image above that this isn't a blog post about Frozen or Christmas  Instead, I'd like to talk about everyone's favourite subject; social media. Gah! I know quite a lot of you are now going to close this window, unfollow me, throw away your phone and report me to the police. I might deserve some of that! I mean, have you READ my tweets?! Jeez!

For the handful of you who remain, let's get into it. Sometimes, I "do a lot of socials" and not just for myself. From time to time, I work for others (volunteered and paid roles) alongside my own blathering. It's cool, I like the interactions and social media has opened a world of experiences for me. It's helped my health, too. My T1D is unrecognisable from what it used to be just 6 or 7 years ago. That's an incredible thing if you really consider it. It also paints the general population in a great light, especially diabetics, as they are the driving force behind my current diabetes management and stable health.

I've thanked the online diabetes community in several blog posts and posts on socials. They truly are a great bunch and if you're new to that world, embrace it and soak up all the info and support that you need. In other posts, I've issued warnings to people to be cautious online. Despite the majority of people having no agenda but to assist others and gain their own support, there will always be a minority who are looking for something else. What are those things? The list is likely long, but you can probably include; using others for profits, career progression, gratification, and self promotion. I've experienced those things and more. Perhaps you have, too. Whilst that's sad, particularly as the diabetes world is focused around health, it's not very surprising. This is the Internet, of course!

Part of the online diabetes community is GBDoc. You're probably aware of it if you stumbled upon this post via a link on one of my socials. I've had a lot of involvement in that community and, again, it's been tremendous. When I began tweeting about diabetes, I was very determined to not involve myself with any community or organisation. That probably lasted about a month! and after a year or so, I was asked to be a volunteer along with several others. Volunteers have come and gone in the last 5 years. They had their reasons and their departures didn't affect me. We remained friends, largely, and some are still kicking around on socials today.

And now it's my turn to depart.

I've simply lost the motivation to continue to freely give my time to GBDoc. There are reasons for that and there are absolutely a select group of people who are behind those reasons. To detail each would result in a very long blog post and it would probably create an online inferno. My own personal attacks have included accusations of stigmatising others, subversive posts that target others, discriminating against others who are not British, not fact-checking things I retweet (because I'm CNN, obviously)... and I'm going to stop there because even as I type those things, and even after some time has passed, I feel affected by those accusations and the shocking levels of entitlement to tell me how I run my own personal account. I'm not perfect. Indeed, there have been times when I've corrected or removed something I knew to be wrong or even something that could be misinterpreted. Over the years, I've listened to others and made apologies for my own errors and, unnecessarily, the misinterpretations of others. Those instances were on Twitter (now X) which has never really been the easiest place to read tone from or gain much from in the way of great detail - unless you have a verified account and you love writing essays, of course!

I'm not looking for sympathy. However, I feel sorry for my friend, Jules. She's well known for living with some serious conditions which are exacerbated by stress. To listen to her breaking and tearful about the whole saga was very tough. The non-apology and the carry-on-regardless nature of those involved was bewildering. "Bewildering" was the best I could muster after deleting various expletives. Of course, you should form your own judgements if you wish, but from someone "on the inside" I know the hurtful remarks made about GBDoc volunteers (managed by Jules) were so far removed from reality. I hope that she'll come back one day. I'm sure the community will continue to thrive in whatever guise. 

There is much more I could add to this post. I may follow up at a later date. There will, of course, be more blog posts on other subjects in the days, weeks and months to come. If you're from GBDoc, it's been lovely to volunteer for you since 2018. Stay well. 

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I Was Feeling Complicated...

...I was feeling low. Annie Lennox is bloody brilliant, isn't she? The song is Thorn In My Side by Eurythmics, and you'll probably be unaware of it if you're under 35. Put it on your Spotify while you read this post.

This post is about diabetes related complications. If the subject is too difficult for you, then please come back again for another post in the future. Normally, I wouldn't bother to put a trigger warning like that because I'm a "warts and all" diabetes blogger. However, I understand that the subject can be upsetting for people who live with diabetes and their loved ones because it is so utterly dreadful. So, if you're still here, let's begin.

The story of my own diabetes related complications has been well documented in this blog and across my social media accounts. If you're unaware, and in short, I suffered severe eye complications from around 2010 - 2012. I had several surgeries and I spent a good deal of those two years living in near blindness. Things improved and although I am "registered as blind" I am far from it. The reality is I have a visual impairment that does impact my day to day living... actually day to night living, my night vision is shocking, and I need to wear specs to read and write incredible blog posts such as this one.

As I head rapidly towards 40 years with T1D, I count myself lucky to only have had that experience of complications. Oh, if I could change history and not go through that then I absolutely would! I count myself lucky because I know many others who have been through more, much more, much worse and they keep on fighting with lots more day to day (or night) issues than I have. Also, as I've aged (matured?) with my eye complications and embraced the lived experience of others with T1D, I have come to realise something:

I was wrong.

An admission of being incorrect is a tough one to express. It's rare to read of anybody back-tracking and changing a firmly held view. I don't know why, as human beings, we're so proud about always being right. I mean, just by pure chance, sometimes you'll be wrong... right? Anyway! Why was I wrong? Well, for several years and up until very recently I've harboured a feeling of self-blame for my eye complications. I may have even written about it a few years ago, but then I never touched on the subject again. Pride? Over time, and with more experience, I've come to realise that I've been wrong to shoulder the blame for what I went through.

I'm not going to shift the blame for my complications to another person. Why it happened, is down to one thing; Type 1 Diabetes. After that, the reasons don't really matter. History cannot be changed. Yet, for a long time I put the blame on myself, the missed appointments, literally running out of an appointment for laser surgery, hiding away and pretending it wasn't happening. 

To run away from you

Was all that I could do

Annie was probably referring to an ex-lover. For me, to run away from those scary appointments felt like my only option, the easy option, and I was an adult. Nobody was forcing me to attend. Indeed, nobody would chase up missed appointments or why I'd scarpered part-way through laser surgery. Why would they? DNA (Did Not Attend) is a common thing in the NHS and the reasons for that can be complex rather than simply the patient just doesn't care about themselves. If the patient doesn't care about themselves, surely they are in the greatest need of the soonest care? A discussion or a blog post for another time, perhaps.

I should've known better

But I got what I deserved

Was exactly my thoughts for many years. I was told by enough healthcare professionals. Yet, "told" is something we experience a lot when attending our diabetes reviews.

"You need to get your A1c down"

"You need to have less hypos"

"You need to check your blood glucose more often"

The list is long and, if you have T1D, you've probably got your own extensive list of "tolds". 

Modern care has come to realise that the harsh approach, the scaremongering, doesn't work very well on the whole. I agree. It clearly didn't work for me having been subjected to scaremongering from an early age. Perhaps if all of my diabetes history was analysed, those early years were the seeds planted for my mid-life complications harvest. Who knows? Again, I'm not shifting blame for my complications to another person or persons. Diabetes got me here, my own immune system did the dirty work. What followed was a war and in every war there is suffering - my left retina took the brunt.

Complications are indeed a thorn in my side, today. Hopefully, they won't be for you. If you do get some bad news, I have some words for you:

It's not your fault. Don't put yourself through what I have for a decade.

Complications treatments are as good as they've ever been.

Be brave. You're only here once and you matter.

Things will get better or settle down. 

Seek support. The NHS might offer it to you - take it! 

Talk and share. The huge #GBDoc community has more experience than any clinic. We got you.

This post was tougher to write than I expected. Thanks for giving me a few minutes of your time.

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The Power Of Sharing

In the world of diabetes management, every day brings unique challenges. Yet, through the power of advocacy and awareness, individuals with diabetes are finding the strength to face these challenges head-on. This blog post revolves around a compelling story shared to me by an online diabetes peer, which beautifully encapsulates the impact of diabetes advocacy and the resilience of those living with the condition.

Our peer shared a moment from their life that unfolded during a seminar. It was a day like any other, but their insulin pump had other plans. It malfunctioned, resulting in high glucose levels—a situation that can be unsettling for anyone. Instead of feeling embarrassed, this individual demonstrated remarkable composure. They calmly injected insulin and replaced their pump set right there in the room, without leaving or excusing themselves. In their own words, they did it "like it's a normal thing...which it is apart from injecting."

Here is their message, shared with permission: 

This story carries a profound message, not just for people with diabetes but for everyone:

The Power of Advocacy: The online diabetes community, along with dedicated advocates, has played a pivotal role in raising awareness about diabetes. Their efforts have contributed to a more informed and understanding society, allowing individuals like our peer to feel supported and empowered.

Breaking Down Stigmas: Our peer's ability to manage their diabetes openly and confidently challenges the stigmas surrounding the condition. It exemplifies that dealing with diabetes, even in unconventional situations, should be normalised and accepted.

Self-Empowerment: This story is a testament to the resilience and self-empowerment that individuals with diabetes can cultivate. When people understand that diabetes is a part of life but doesn't define it, they can confidently manage it without feeling the need to hide.

Inspiration to Others: The courage displayed by our peer serves as an inspiration to me and I hope others in the diabetes community. It shows that unpredictable moments can be met with grace and that diabetes doesn't have to hold anyone back.

The Importance of Preparedness: While managing diabetes is a day-to-day reality, moments like the one our peer experienced highlight the importance of preparedness. Knowing how to handle such situations and sharing this knowledge can benefit the entire community.

This story is a testament to the transformative power of diabetes advocacy and the resilience of those living with the condition. Through advocacy, we can break down stigmas, inspire self-empowerment, and encourage a sense of normalcy in managing diabetes. Our peer's experience during that seminar is proof that, with the right support and awareness, individuals with diabetes can confidently navigate even the most unexpected moments with confidence, ensuring that diabetes doesn't define them, but rather, becomes just another part of their remarkable lives. 

I talk about my diabetes a lot and I do that simply to share my experiences. Remarkably, that simple act can have a hugely positive impact on others. I strongly encourage you, reader, to share your own experiences about diabetes. 

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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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