Too Much Or Not Enough

I'm a very vocal advocate of individuality in diabetes. I've certainly used the "YDMV" (Your Diabetes May Vary) acronym many times during discussion and when expressing a view. Type 1 Diabetes is often viewed as simply injecting or pumping insulin to manage consumed carbohydrates and I'm fine with that. I think if you don't have T1D, live with a diabetic or work in the world of diabetes then why would you know much more? It's not wrong, of course, but it doesn't really cover more than the very basics.

Inside of our world (assuming you live with T1D, live with a diabetic, work in diabetes, etc) you probably realise that it's so much more than carbs and Banting Juice. All the decisions that we make are well documented and there are likely lots more that differ from person to person. You might have your own unique decisions to make in regards to your diabetes because you're an individual, living your own life and managing your own diabetes. Diabetes mirrors life in various ways and certainly, for me, the differences between person to person is one of those ways.

I think I've stated the obvious and I'll get to my point and what the title of this blog means!

I've recently mentored a few of my peers in regards to their T1D, you may have read about some of that on the Twitter. The vast differences between those people and the hundreds of other peers who I've engaged with is apparent but one thing which crops up frequently is some of the advice given by HCPs - advice which I'm struggling to understand and it looks a little something like this:

"You're scanning your Libre too much"

 "You're not finger pricking enough"

"You don't need to check your CGM that often"

Those three pieces of advice might be right, of course. My own experience is based upon the "too much scanning" advice. It was likely well meaning! I had complained about injection burnout which may have been confused with general burnout. A high number of sensor scans may have raised a red flag and well meaning advice followed. It was the wrong advice because, for me, I wasn't scanning too much. Why? I live my life in my way as an individual. Scanning a sensor, when your phone is often in your hand due to work and other commitments, was not tasking me or burning me out. Perhaps if I was working 10 hours a day as a taxi driver or heart surgeon then the same number of scans would be difficult or even impossible and noteworthy as a cause of burnout. 

"You're scanning too much" doesn't take into account me as a person with my own life. It compares me to others and even the HCP's life experience and what they believe to be the right amount. I stated why I scan as often as I do and why it's not a problem and we moved on. I don't fear speaking up during a consultation but I do know that others have issues in that setting and they feel anxious about doing anything unless they're nodding in agreement with an HCP.

"You seem to be scanning your Libre a lot. Is that causing you any problems?" might be a better way to address that red flag. But who am I to talk about communication!? *wink*

The same could be said for the other two pieces of advice, above. To notice something a little unusual is right and great care and it should be questioned but never judged or followed with a sweeping statement. "Too much" might be just right, "not enough" might be just right. Great care considers individuality and works with that. Ask questions, talk to your patient, get more information.

The above three pieces of advice might seem innocuous and to some that might be right, to others it might pile pressure on to an already over-spilling plate of decisions and burden and stress. That's why I'm very vocal about HCPs treating us as individuals in every respect and why it makes great sense to treat each other in the same way.  

 As you might have seen, a conflict has broken out in Ukraine as Russia has invaded that country. The scenes on TV and on social media are horrifying. What can we do? Well, I don't think there is a wrong way to help if you donate to charities who are active in helping the people of Ukraine. I support many charities but one which has always had my heart is MSF. Medecins Sans Frontieres translates as Doctors Without Borders. When it comes to the health of others in disaster areas, war zones and the like then I think we all have a duty to do what we can to help and help those who directly help! such as MSF. With that in mind, all donations to me via Buy Me a Coffee and all the pennies generated through the ads dotted around my pages will be donated to MSF. I will make up the difference for the fees taken by PayPal and Buy Me a Coffee. That will run until further notice, no time frames and possibly until Ukraine is a free country again. Thank you for reading my blog. 

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The Diabetes Technology Revolution

Welcome, Comrades. It's another blog about Diabetes tech because you haven't been inundated with news of it through your socials. Of course you have and it's been fantastic news! If you've missed it, in short, T1Ds in England and Wales are set to be given NHS funding for CGMs and some T2Ds (on insulin) are set to be offered NHS funding for a Flash Glucose Monitor.

The gates aren't being kicked down just yet. The above seems likely to go through in the March of 2022 because the behemoth that is the NHS and NICE aren't exactly agile in directional changes. Cool, fine, okay. 

The news doesn't really impact upon me. I'm one of those lucky social media types who are offered CGMs in return for reviewing and talking about functionality. I'm delighted for my peers, especially those who don't get along with Libre because of accuracy issues, adhesives, etc. I do hope that the CGMs on offer are varied, however. Having used several in the last 4 - 5 years and having spoken to probably thousands of other users, it seems apparent that different systems work better for some than others. I don't know why that might be but I've certainly noticed some monitors aren't within my personal parameters of acceptable accuracy and comfort. Recently, how environmentally friendly these devices are have become more of an issue - I've been talking about that since the summer of 2020 so, that's nice to see and it will be fascinating to watch how the different companies react.

Type 2 Comrades on insulin, how happy are you? I really hope that this news is the start of a more level playing field for you guys and you're offered equal respect and reduced stigma because of this and future developments. 

Are we really now heading into a full on Diabetes tech revolution? I saw Libre as the first step on that ladder when I first began using it, despite it's questionable accuracy, a few years ago. And now we're here - on the verge of total CGM access, no need to be under 18 or pregnant or both. Looping trials are seemingly progressing well. Type 2s are now at the party. Perhaps there'll be a cure in 5 years!? Hahaha. Sorry.  I think we are and we're right in the middle of it. The drivers of change must be thanked for that because even if this is as far as it goes for the next 10 years it will be a huge advancement in care and undoubtedly improvement in the long term outcomes for Diabetics.

Vive la révolution!

Where next? You've read this far without me mentioning NICE pump therapy criteria. But! budgets, tax payers! but there are people who need it more than others! but this, that and the other. I'm done with buts. If I wanted buts I'd be a colorectal doctor. Where there is a problem, there is a solution. If the problem is money then the solution is to obtain more or reduce spending to balance the books. But where from!? - Read the above about "buts". I'm happy to work on that solution for a very reasonable salary. If the problem is the current NICE criteria, and it REALLY is, then revise it. Just today, I've been told of others who have purposefully let their blood glucose run high to obtain pump funding because of the NICE criteria. Let that sink in. I know that I've briefly spoken about this before but now others are openly approaching me to tell me of such occurrences. That's self harm. In the short term, you risk DKA and possibly death. In the long term, you increase your risk of Diabetes related complications. Self harm and risking awful health problems to obtain something which should reduce those horrible things happening in the first place. 

So, today I'm calling for the scrapping and revision of the NICE criteria for NHS pump funding. It is not fit for purpose. Not only is it unfair and far too stringent, it is resulting in real harm in the real world and that is shameful.

 Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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What a Site! - Diabetes Tech Worn by Everyday Diabetics

Have you noticed the Diabetes Tech ads on your TV, lately? It seems to be a marketing avenue that a few companies are exploring. I'm happy about that. It normalises the use of the technology in day to day life and reduces stigma around Diabetes. One particular ad' caught the eye of my mother, who asked "Don't you use one of those disc things for your blood sugar?" She'd seen a Libre ad' featuring a woman, swimming. The conversation led to my explanation of how the tech works and how we both wished it was available in the 1980s when I was diagnosed. 

It also led me to think about the marketing around Diabetes technology. The images, videos and individuals used. Nick Jonas might spring to mind? Perhaps a few other names, too. Of course, the famous and the achievers deserve access to Diabetes tech as much as the rest of us but perhaps it's time to celebrate the "Everyday Diabetic" a little more in such marketing. I consider myself be a Everyday Diabetic - Just a man who talks about his condition, warts and all, on various platforms. I'm lucky to have an agreement with GlucoMen, who appreciate my content and supply me with their Day CGM. I'd love to see more individuals given similar opportunities.

So, reader! Allow me to present to you some of my tech wearing friends from around the world. Beautiful souls, kind hearts and living their best lives while wearing Diabetes technology to help them manage their condition.

It seems that we're a diverse lot. Not just in the management of our condition but where we put our technology. Arms are popular! The Libre wearer in the photo at the top of this blog moves hers around:

"I was in need of a new spot, as the back of my arm needed a bit of rest (the sensors aren't too kind to my skin, especially then - I expect they have changed something with the adhesive). Besides this it tends to come loose quite easily, so it's a lot less of a hassle on the front."

That's Julie, she says "I wear my sensor on the side or to the front of my arm, because I can see it I’m more conscious of it so I don’t knock it off, when I wore it on the back of my arm I was always knocking it off especially at work and when strength training."

Jimmy likes to keep his sensor warm, "I wear my taped up sensor on the inside of my arm (it doesn't like the cold)"

Some sensors have a habit of coming loose and falling off! So putting a strap on could be a great idea, especially if you have a 3rd party add-on such as Bubble.

Hot weather (even in the UK) causes issues, too. That's why Richard tapes his in place.

The 3rd party add-ons are still a popular thing when it comes to turning Libre 1 into a CGM.

While arms are still popular this pump user prefers core sites too, noting "Here’s where my pump is currently sited. I also use my arms, back and backside."

And if you have two pieces of tech for your blood glucose? "My trial of Dexcom is about to expire so here’s one of the Dexcom and a new Libre soaking in before I activate it in 24 hours time. Both on my stomach."

How about a pump on one side and a CGM on the other? Tummy button piercing is an optional extra which might not be NHS funded. This tummy belongs to a Diabetes tech user who is proud to show off her gadgets, "If it helps others, I'll be happy. I'm not shy in showing it either, bring on the summer bikini shots"

How about a close up on a pump cannula in action? Textbook stuff!

That one probably isn't in many textbooks! But, do you know what? Sometimes rules are made to be broken and if it works for you?... "The readings were less than 0.5mmols different and frequently equal to blood glucose"

Chest is best?

Robert might agree, with this upper-chest Libre. "Pump on my arm, libre on my chest, I'm usually the other way around. I try to avoid my waist for pump as I over did it a bit!"

Anybody for legs?

"I started using my upper legs for my pump sites about two years ago! Mostly because my CGM had to be on my stomach (it is now also been approved for your arms so that's where mine is now)! I have a lot of stretch marks, so a bit part of my stomach is unusable. I have also noticed that since switching to my legs, I have not had one bent cannula, this was something that happened often when i still used my stomach for my pump infusion set."

Guys use their legs, too. Including this pump user.

A late entry comes from this patch pump user. What goes on around the front, goes on around the back.

So, there's a splattering of lovely people and their tech sites. What, me? Alright then. It seems only fair that I show you some of my tech sites from over the years.

GlucoMen Day CGM on my tummy.

Libre leg.

Dexcom arm

Thank you very to everybody who contributed to this blog. I think we could make a calendar from these photos. Imagine seeing my thigh on June 1st!? K, maybe not.  Also, for confirmation, all contributions to this blog agreed to me publishing their image and quoting their words.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

BUY DIABETIC DAD A COFFEE HERE

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