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.

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KISS

 

Happy St Valentine's Day!

Today probably means very little to some of you. If you're single and looking for love or heartbroken or lonely then today might be pretty painful for you. I'm sorry if you fall into those categories. Rest assured, life rarely stays the same if you seek out ways to change it. If you do fall into the painful categories then I have great news! This blog isn't about St Valentine's Day! Woop!

The title of the blog is wrong. It should really read "K.I.S.S"

Keep It Simple Stupid

And that's what I want to touch on, today. Keeping things simple. Sorry about the photo, by the way.

I've had two experiences with the NHS in the past week. Let's look at the good experience, the simple one, first:

- I noticed that Freestyle Libre 2 was now available to NHS patients. I've been a Libre 1 user since 2017, self funded for a while and NHS funded latterly. My initial thoughts on Libre were mixed. I vlogged about it! You can watch one of those videos here : Freestyle Libre Inaccuracy - A Diabetic's Rant More recently, I've been a happier bunny. Accuracy has improved, I've found inserting the sensor into a thigh to be far better in terms of sleep and general comfort, no fails and nothing has fallen off. Cool, so Libre 2 seems like a natural progression. Here is what I went through to get it on my prescription:

Friday, 1.30pm - I emailed my practice nurse and politely asked if my Libre prescription could be changed to the new version.

Friday, 4.00pm - The nurse replied to tell me that has now been done.

That's it.

I felt like rushing to my doorstep and applauding.

No red tape, no need to sign anything, provide BG data, travel to the clinic, complain on Twitter, nada, nothing. Super duper!

And the not-so-simple experience?

- My lovely pharmacist called. He was processing my repeat prescription and, after scanning the 'script "barcode" his computer said 'No!'

In England, people with Type 1 Diabetes are medically exempt from paying for prescriptions. We fill out a form, the doctor signs it off and we get our medical exemption letter, card, number, whatever it is. That is then given to our chosen pharmacy and we're good to go! free meds!

Only the exemption award trophy expires after 5 years. Somewhere in the dark recesses of my mind I remember renewing this before. And here we are again. 

In a pandemic.

Stay home, shave wives, protect the DFS sale... or something.

It's also winter. And despite climate change, it's really cold in England, right now. Snow and ice on the pavements. Did I mention that I have a visual impairment?

Those things aside; even if life was totally normal and it was a beautiful day for a 4 mile stroll, what an utter ache in the plums! A 4 mile stroll encompasses the journey to the GP surgery and home. Assuming I fill out the form at home and not in the surgery (stay home) then it's another 4 miles. Then it'll be time to show my exemption to my pharmacist.

It's totally pointless to renew a medical exemption for a life long condition. It causes additional stress and burden. In my case, it's pretty dangerous.

I know this is probably on the agenda of things to change. I'm happy to hear that, but I wonder just how complex is it? In the scheme of things, it's not a massive issue but it is an issue and one that every person with T1D will face every 5 years. It needs to stop. This renewal system needs to be dragged into 2021. There is no cure for what I have.

C'mon NHSE and prescription processors, let's sort this one out. It's really simple and once it's done you'll look much less stupid.

 (Thank you to Julie Tickle for sending the renewal form to me in the post, saving me from one perilous journey.)