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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Gotta Wear Shades

I don't HAVE to wear shades but doesn't everybody look cooler while wearing sunglasses? That's me, in the photo, outside the Bellagio in Las Vegas, almost 8 years ago. This blog isn't really about sunglasses, I promise.

Firstly, huge thanks to everybody who supported my December charity blogs. They raised £90 for Diabetes charities - all the money has already been sent, take a look at my Twitter timeline for a detailed breakdown. Perhaps I'll do something like that each year because it's good to give.

I'm doin alright, gettin good grades, the future is so bright, I gotta wear shades. Do you remember that song? It still gets thrown around from time to time when things are looking promising. In the world of Type 1 Diabetes, in the UK at least, things do seem to be looking up. On a personal level, things are pretty good as well.

I'm doin alright

The numbers suggest as much. My eA1c is floating around 6.6% and my Time In Range is in the low 80% area. Numbers are just data so, that aside, I'm happy to confirm that I actually feel pretty good, too. Better levels of sleep because of fewer Diabetes related interruptions is certainly a life changer. That and no feelings of being overwhelmed by injections have certainly put a shine back into life. Those things are down to me using an insulin pump, of course and you know that because you've already read of my gushings for the last 4 months. If you want to switch to pumping then I encourage you to start the conversation with your Diabetes team. At this point, I am still refused NHS funding for pump therapy and I've taken my foot off the throat of decision makers in that regard - I'll explain why at the end of this blog, keep reading.

Gettin good grades

TIR, eA1c, Hours slept... there are probably others, too but the numbers are looking good and if T1D is judged on such things then the grades are looking pretty nice.

Future is so bright 

Possibly. A bright future involves access to all available technology to all who can benefit from it. My data shows the benefits to me but that's not enough to satisfy the current NICE criteria for pump funding. I've written about why the criteria isn't fit for purpose and is causing individuals to self harm to achieve an A1c which would make them eligible for pump therapy. That's not a route which I'm going to explore but I will keep talking about it because it's obviously very wrong and potentially very damaging to the health of people living with T1D. 

A bright future involves the scrapping of the current NICE criteria for pump funding. Good try, folks but delete that and start again. You can do better. Aaaaaaand it seems that might be happening. I await the news of NICE criteria changes, later this year. March, perhaps. Of course, if it still pushes individuals to self harm then my noise will increase and I will submit to the requests to talk about it through more public sources than my little corner of the Internet. The coming months will be very interesting indeed and I do hope the future is incredibly bright for everyone living with T1D and not just for some, for some things.

I gotta wear shades

Because, as established already, shades are cool. It's important to remain cool and calm in most situations. If you're fighting off a hypo or struggling to reduce a hyper then I've always found things seem to move more smoothly if I just take a breath and stay calm. Perhaps stress and anxiety can affect BG? Of course it does! as it can affect other areas of your life. So, rather than press harder for pump funding I am going to do nothing apart from wait. I'm going to put my faith in the decision makers to level the playing field, faith in HCPs to facilitate access to technology and look for reasons to make it happen rather than reasons to refuse and faith that the current use of a donated pump will hold out long enough for me to not be worried about the day it dies - because I'll be granted NHS pump funding and a warranty for the tech I'm using. The shades are on despite it being January, freezing cold and dark at 4pm. The shades are on because I'm cool and calm and patiently waiting for the right things to happen.

Happy New Year.

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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The Path To Pumping - Pt.3 The First Week

Whoa! What a first week it's been with my pump. Time has flown by and so much has happened, even progressed, since the last blog. Let's get into it.

Firstly, huge love and thanks to all my friends and peers within #GBDoc. I have been inundated with support and advice from seasoned pumpers, loopers, HCPs and curious MDIers. Sometimes, I feel there is a hoard of big hearted people who have my back and who can relate. It really does swell my heart and I doubt that I could ever repay such kindness and support.

The first week! So, no (or very minimal) insulin on board, on Wednesday morning I interrupted @Julesbhrh from celebrating her birthday month to supervise my first cannula insertion and to get started with pumping. Doing that over a video call is not easy! especially without a COB (coffee on board) and with a rapidly increasing blood glucose level. It took a while, as most things do in your 40s, but we got there with my CGM reading 17.4 mmol/l. Icky, right? Previously, a Novorapid pen correction would take several thirsty hours to bring me back from the brink. Not so with Fiasp in the pump. After 30 mins I was nudging the happy zone and I could even plan my lunch and pre-bolus. What a great start!

 The first 3 days proved to be a continuous stream of surprise and delight. Fiasp was working beautifully and is extraordinarily fast, I had begun to adjust to sleeping with a pump attached, my TIR rocketed, I wasn't overwhelmed at all, no injection fatigue, fasting BG numbers leading me to question if I'd been cured by the Cinnamon Fairy, overnight. Apart from a kinked cannula, which taught me that when no insulin is going in I will become hyper very quickly, it's all been smooth sailing.

Can I brag? Just a quick brag. Between Saturday evening and Tuesday afternoon, my TIR was 100%. What in the name of Banting's Balls! I've had two 24hr TIRs in 4 years. That's almost 3 days in a row. Yeah, it's gone well. I've since managed a full set change without supervision and I've grown confident and comfortable with the pump.

Of course, it can't end there. I'm not in this for a quickie and then back to pens. No way, Amigo. That means I'm going to need consumables and Fiasp on prescription. August, it seems, is a popular time of the year for annual leave within the NHS and I'd chosen a Bank Holiday to reach out to my HCPs. To their credit, I was replied to on the Tuesday morning by email and had a telephone call in the afternoon. Outstanding stuff. See! HCPs from UHL, I can be kind and give credit where it's due. No need for patronising DMs or to block me or unfollow me. There is nothing to fear. Meow! 

I digress, what did the HCPs say about me going it alone? "We've never had this before" made me happy because who wants to go to work and deal with the same thing each day? A really good discussion with my Consultant and DSN lasted for around 30 minutes. The great news is that Fiasp is happening right away. Beyond that, I have been referred to the Pump Team and a certain Professor who some of you will know from Twitter. No, Partha relax, it's not you. At that referral, I hope to continue the good, honest, dialogue with that team and work towards full pump funding.

While I'm waiting for that referral to arrive, I'm hunting for consumables and I've opened an account with Roche and Accu-Chek. I've been given permission to buy my own consumables, lucky me. It appears that the items I need will cost around £120 per month, that is excluding VAT. If I want to use an insertion device for my cannulas then that's another £25. Yikes. Hi Americans! I can relate... a bit. Some kind folk have sent some supplies to me for which I am hugely grateful. I'm looking at you @NanaNeylin and of course the world's hardest working person @Moodwife

And that's where things stand, today. I'm delighted to be pumping, amazed by the numbers, hopeful that the pump team will agree that funding makes sense and most of all I'm determined. This will happen. 

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

Size Matters

 

It's not what you're thinking, let's get that clear right away. Although! I am referring to little things in this blog, at least in regards to Diabetes. Those little things which we might be guilty of neglecting, ignoring or putting on the back-burner for another day. I've certainly done those things for various aspects of my Type 1 Diabetes.

Recently, it occurred to me that the little things can get neglected by others. Specifically, our healthcare professionals. I'm a firm believer that the majority of HCPs go into the profession with the very best of intentions and that they carry those intentions throughout their professional lives. Perhaps, with experience, shortcuts are used and without any problems arising from doing something to save time, to allow for a break, deal with a clinic which is overflowing and full of patients, etc. An HCP might repeat the practice because it's a small thing, nothing bad happened. Those of us who have been employed may have done similar things. Perhaps the job was stressful, you needed a break or you just really hated your boss! So, you cut some corners, reduced your load.

Yesterday, I tweeted the image below:

And I asked "Can anybody see the problem?"

The Tweet is here if you'd like to read through the replies.

It's probably obvious to you, if not - That's my prescription for 100 needles to be used on my Insulin pens. The NHS app indicates they cannot be reordered for 3 months. That's 100 needles for around 90 days. A needle should be new for each injection and I average around 8 injections per day.

It's probably an app issue. Probably! It's still a reasonably new way of ordering your repeat prescriptions. I know a way around this by calling my GP's prescription line and re-ordering needles through that method. It's never been challenged so, what's the problem?

Let's assume you're newly diagnosed. You're given a mountain of information to take home alongside the emotional pain of dealing with your new chronic condition. You're going to forget something or make mistakes. Maybe, after seeing your 100 needle allowance, you forgot that your DSN told you to use a new needle for each injection. You assume you can only use one needle per day and you're unscrewing it and moving it around between your basal and bolus pens, each time it's getting blunter, damaging your skin, perhaps not delivering the dose you require, damaging your BG and health in other ways.

Perhaps your maths isn't great and the numbers don't even hit home to you, until it's Saturday morning and you notice one needle left in the box.

It's just a little problem. Perhaps nothing terrible will happen but the chance is there and even things with huge odds have to happen sometimes, otherwise nobody would win the Lotto.

Needles and other Diabetes "paraphernalia" are the basics of life with the condition. Although I can work around my particular problem by ordering meds on the telephone, this isn't the first hurdle I've faced with access to the things I need to stay well, to stay alive. In 2017, I had my test strips reduced from 200 to 100 per month by my GP because my HbA1c was too high. Because, in her wisdom, giving me less test strips would seemingly improve my blood glucose. We spoke, at length, and after I questioned how long she'd been living with T1D and all it's difficulties & quoted NICE guidelines to her (thank you, Martin) my original prescription was re-instated but not without more gatekeeping. "If your A1c is over 7% in 3 months then I'm referring your care to the hospital". It was 6.8%. 

Little problems, little annoyances, a little more burden, Sir? Why, don't mind if I do! Just pop that on to my already burden-laden plate of Diabetes. 

"Oh, you think tech will help your Diabetes because it's proven to help hundreds of thousands of others? Well! We need you to jump through some hoops, go on some courses, give thanks at the DAFNE altar and if things are looking better in 90 days then maybe we'll let you continue to use that"

I've used some artistic licence, there but this one is accurate:

"You're too good at this to need a pump".

Flattery goes a long way! But deflecting through positivity is something I've known for many years. 

There are more but you get the gist. Gatekeeping some things might seem like a small matter, something of little concern, keeping things well within budget. The bigger picture for a growing condition within our population? I don't think I need to spell that out.

I know the NHS isn't perfect and that mistakes will happen. I also know it's 2021 and we're about to trial the use of artificial pancreas technology with 1000 individuals. Amazing stuff! Yet, some are denied enough BG test strips, some can't get an appointment to see a DSN or Diabetes Consultant, some have been promised a pump... in 2019! (they don't have it). Little things are still happening which do not lend themselves to good Diabetes care. Perhaps we need to start spending pennies on very basic care, uniformed care no matter where you live, before we get giddy with the pounds. 

 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