Tuesday, December 21, 2021

Giving

 

We're well into the season of giving, just a few days until Christmas in fact. There are boxes and parcels strewn around my house. Most of those contain gifts, yet to be wrapped but others contain insulin pump consumables and after a tidy up and an inventory check I have become rather overwhelmed.

Before we get into the guts of today's blog, please allow me to draw your attention to the Buy Me a Coffee links at the bottom of this piece. Every coffee bought for me during December will be donated to Diabetes charities. I have plenty of caffeine to bother my hypertension, don't worry but if you appreciate this blog then do what you can. As always, please only donate what is affordable to you.

Why overwhelmed? Because during the inventory check it quickly became apparent just how much has been donated to me and Pumpy McPumpface. I've been pumping for 4 months so, you can probably imagine that I've got through a lot of consumables in that time. However, I have so much right now that I don't really need to worry about consumables again for a long time. I originally thought that I'd probably be alright until February or March. Wrong, take a look...


...and my Christmassy kitchen table is pretty big but it's not big enough to get everything into one photo. Don't forget the previous 4 months of consumables which I've already used up. We Diabetics get through a lot of stuff! 

Stacking that lot up took quite a while and when taking the photo I realised how incredibly lucky I am. What have I done to deserve such support and kindness, exactly? and then I remembered the recently sent Birthday and Christmas gifts, some from people I've never met. A lot of people have been very generous to me and when I ask my close friends why that is, the answer is always the same or at least very similar. I ask it from time to time because I don't consider what I do to be a chore. The reply usually comes back along the lines of undervaluing myself and I have perhaps been guilty of that at various times in my life. I think that there is great power in openness and talking when it comes to health and Diabetes, in particular. There is great power in honesty and being agenda-free. While I remain a presence in our community, I will continue to do the same things. How else can I repay my peers? I hope that being there continues to be enough and I hope that all of you remain in my life for a long time to come.

So, this is my last blog before Christmas and it might be a very difficult time for some of you. Diabetes aside, it's been a rotten year and I know many will be missing loved ones who are no longer with you. I cannot imagine your pain but I will be thinking about you. In our community, we lost Gwynnie, earlier this year and I still really miss her. I remember her sending me a Libre sensor, once because I would be without tech for a few days. She took my address and it arrived a day later. She also took part in everything! and was absolutely hilarious in the process. I still check her Fantasy Football team scores and in all honesty, she's scoring more points than many of you lot from the afterlife. I bloody miss her. She was a great example of how to advocate for others despite infrequent recognition and limited opportunities. In her memory, I will continue to raise the voices of others. Be more Gwynnie.

You can do that, too. Talk about your Diabetes, ask questions, speak up without fear. In turn you will be supporting your peers. Pick any social media and begin. You'll mostly find me on Twitter (@DiabeticDadUK) if you'd like to engage with me.

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! AND until Jan 1st 2022 I'll be donating all your kind coffees to various Diabetes charities. 






Friday, December 17, 2021

Thirty Seven


Is it the answer to life, the universe and everything? 37? probably not. I think that's a different number but 37 is a significant number for me, this weekend.

Saturday December 18th will mark my 37th anniversary of my Type 1 Diabetes diagnosis. A Diaversary, if you like. I realise that my Diabetes is older than the actual age of many of you, reading this. The date also marks my birthday. I'll be 45. I choose to celebrate the birthday rather than the anniversary. However, in this blog, I am here to offer you words of encouragement in regards to longevity and Diabetes.

When I were a lad it were nothing but fields as far as the eye could see! Also, T1D was not the greatest news. Long term outcomes were not wonderful and serious complications were almost a guarantee. Yet, I'm still here and do you know what? I've had an amazing time and I'm going to continue having an amazing time. Life is finite, one day it'll be my last and I'm fine with that but I'll be damned if Diabetes takes me out when we're not even at half time.

I take great joy in proving people wrong, you may have noticed. That, of course will upset some who are firm of mind and narrative. The things they suggested I couldn't do? wouldn't do?

- Drive
- Have romantic relationships
- Start a family
- Have a worthwhile career
- Be a functioning adult beyond my 30s

Those are some of the main ones and there are probably dozens if not hundreds more... including eating sweet things!

Half way to 90, I'm not going to stop doing things which make me happy and perhaps even a bit proud and why not? 

T1D is not the end of your life and ambitions. It may feel like that for a while and others may even suggest the same to you. They're wrong and your feelings are lying to you. This condition can and should be dragged through life with you as you choose to live it, hypoing, hypering, CGMs screaming, pumps vibrating, your favourite foods, your favourite past times, your friends, loves, jobs, everything! it belongs to you and not the other way around.

I'n sorry, I slipped into cheesy influencer mode for a moment. Now we're nudging into 2022 and the care and information available means that life with T1D has never been easier. That's easier and not easy. Our future, fellow Diabetics (at least in the United Kingdom) looks bright and less burdensome than in the years gone by. I'm looking forward to the next 45 years and beyond, greatly! 

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! AND until Jan 1st 2022 I'll be donating all your kind coffees to various Diabetes charities. 


Saturday, December 11, 2021

The Dawning Realisation - A Christmas Diagnosis


A slightly gloomy title and photo! I'm sorry. It's tricky to find a good image which represents something that will likely last for the rest of your life. Although it's not the most cheerful of subjects, I do think that those of us diagnosed with T1D do, sooner or later, come to the dawning realisation that this condition is going to last for the rest of our days. News of new "cures" and break thoroughs do frequently make headlines but right now a diagnosis of Type 1 Diabetes means the same thing as it did in 1984; it's yours forever.

On the day of my diagnosis, I didn't know that. I assumed it was like Measles or a Flu - the illnesses mentioned many times in the run up to this day. This day was more important to me than the blurted out education and the books and leaflets. This day was my 8th birthday and I was ready to go home.

The NHS didn't think I was quite ready to leave their hospitality, just yet. They were right, of course. I knew nothing of Type 1 Diabetes, some might say that I still don't, and what followed was a very slow and boring lived experience education featuring:

- How to inject an orange
- Why I'm not allowed to drink Ribena
- Or Lucozade
- What a hypo feels like by inducing a hypo for me
and my personal favourite
- A leaflet featuring an info-graphic which detailed how to refuse a chocolate from somebody "because I'm a Diabetic".

Oh, how the Language Matters mob would've loved the last one. 

This education included some important stuff such as insulin dosage, how to check my BG and urine and carb counts of various foods - which were published in a rather chunky book. The foods were listed in a traffic light system. Green for good, amber for caution, red for no! I've always been a big fan of red.

My birthday came and went and some of the nice nurses were memorably lovely to me. The "poor love, no cake yet" got old very quickly, though. I just wanted to go home because Birthday then Christmas and Star Wars presents! 

After 5 days I was granted release, hurray! The staff said their goodbyes and I couldn't wait to leave the building. No more hospital! I'm better, I'm over that Diabeeting thing.

Dinner time on Dec 23rd 1984.

"Paul! Paul?!"

I was upstairs. Birthday toys.

"Paul! You need your BM and injection"

Wait... what? But I'm out of the hospital, I'm fine. I hesitantly made my way down the stairs. Mum was waiting in the living room while dad was in the kitchen, drawing insulin from vials and making the cloudy looking injection for me, I went in. BM done and injection administered, "All done" Dad chirped. I left the kitchen and approached my mum, sitting in the living room.

"Mum, when can I stop having injections?"

"Never" she said softly, after a pause.

"Oh"

I left the room and went back upstairs.

"Dinner in 15 minutes"

I didn't answer, I couldn't answer. I didn't want her to hear me crying through my response. Instead, I sat on my bedroom floor and sobbed, surrounded by my birthday toys. How could this be forever? How can I have two injections every day for the rest of my life? What have I done wrong?

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! AND until Jan 1st 2022 I'll be donating all your kind coffees to various Diabetes charities. 


Thursday, December 9, 2021

Can I Go Home Yet? A Christmas Diagnosis

 


It's December already! The festive month for many, a birthday month for me. It also happens to be the month which brought the diagnosis of Type 1 Diabetes to my life and I'm going to share that story with you in this blog, today.

Once you've finished reading (that may have already happened) I'd like to draw your attention to the Buy Me A Coffee link at the bottom of the page. Many of you have kindly supported my blog by using that link and for that I'm very thankful. From today until Jan 1 2022, anybody who buys me a coffee via that link will be contributing to a donation to three, maybe four if enough coffees are bought, Diabetes charities. Funds will be split evenly across each charity and I will round up any odd pennies and pounds from my own pocket. I will also add a PayPal link at the bottom of the page to give you the option of different funding methods. If you prefer to use another method then please let me know. Oh and one last thing; Please only donate if it's affordable for you. 

Right! That's the Diabeticathon Relief message out of the way.  It's story time. Are you sitting comfortably?

"Mum?... Mummy, what's happening?!"

Everything was spinning and rushing around passed my head. That was because I had been scooped up from the floor by my mother and she was running to the house telephone, with me in her arms, to get help. I was barely conscious.

"I found him on the floor, what should I do?"

Mum didn't acknowledge me, her focus was on getting advice from my dad and help for me. I started to cry.

"Don't worry" she tried to reassure me, "Dad's on his way home, you might need to see the doctor"

A couple of days before the collapse, I was feeling unwell. The usual 4 Ts; Tired, Thirsty, Toilet, Thinner. I'd also developed a rash on my core which was put down to Measles or Chicken Pox. Generally, I was in good spirits. It was my birthday in a few days and Christmas a week after that. I didn't feel awful but I was drinking a lot of water and nothing was quenching the thirst. I was also told to stay home from school. What a bonus! an early break for the Christmas holiday. My friends would be so jealous! I'm so thirsty, though.

The following days were a blur. I spent most of my time asking for water, peeing or lying on the sofa. Relatives brought me a bottle of Lucozade - the good stuff with tonnes of glucose in it, unlike the modern day version which is less potent. Great! something new to drink. It didn't really improve my thirst, as you might imagine.

I knew something was wrong on the day of the collapse because I was feeling incredibly weak. Everybody was saying "Measles" and I believed the adults because they know best. 

It was mid-afternoon on the 17th of Dec 1984. A date which sticks in the memory like a scene from Back To The Future or The Terminator. Everything felt very strange and woozy. As an adult, I compare it to a very drunk sensation but not at all pleasant. Perhaps similar to waking up following surgery. Then the world went black. I'd fallen, face first, into the living room carpet. My mum heard the thump and rushed in to find me lying there. As a parent, I can only imagine her horror at entering the room to find her child in that position. The scooping up and phone call began and I regained consciousness.

"I'll take him to Dr Ishaq" proclaimed my dad, after a brief discussion when he arrived home.

Dr Ishaq was the local GP, his surgery was a 5 minute drive away. I think we made it in 3.

"Don't worry, it's probably just measles or maybe a bit of a flu" My dad tried to reassure. I didn't know what either was and, to be frank, I would've accepted anything at this point especially a pint of water.

I saw the doctor within seconds. He asked some questions of my parents and then took a look at the rash on my core.

"You'll have to take him to the Borough"

'The Borough' was the locally used name for Warrington Borough Hospital. Even at my tender age of 7, I knew of that following many overheard conversations.

"Jim from next door has broken his ankle, he's in The Borough"

"She was in and out of The Borough on the same day! 8lbs, he is, they're calling him Matthew"

So, I knew The Borough and now you do too - it's the hospital at the top of this blog and A&E was where I was heading in floods of tears. Hospitals are for operations, needles, blood! I was right about two of those.

"It's probably just a flu" one of my parents said on the drive over. Many hopes were being pinned on Measles and now Flu was on the table - both very serious illnesses but I suspect they were fearing much worse and their reassurance was as much for themselves as it was for me.

"Please slow down" I begged of my dad. It felt like he was driving at 100mph. He wasn't, I was just dizzy all the time now and the movement of the car, passing vehicles, trees, etc was making me feel worse. I was probably trying to buy myself some time, too because hospitals = operations, needles and blood.

Naturally, they wanted my bodily fluids and it began with the slightly scary urine sample. I wasn't frightened of passing urine but I was concerned about my room being full of nurses. Seriously, I remember there being 3 or 4 in there - all standing around to wait for me to have a wee into a container. In 1984 we must have had armies of nurses with spare time to watch young patients relieve themselves. I couldn't go and they quietly drifted away. Aaaah! finally. You're gonna need a bigger container and I need a drink of water.

Nothing really happened for a while. I was refused food and water and the evening drew on. Not really an emergency response, right?

"Don't worry... I think it's a flu. I don't think it'll take long" Dad was shifting around in his chair and mum had already gone home because she had my three other siblings to take care of.

Another nurse arrived, carrying a tray. Maybe this was my medicine and I can go home? If only. She was carrying a "BM" kit - now known as a Blood Glucose check.

"I just need to do a BM, Paul. It's a tiny finger prick"

"No! Dad!"

The panic was real.

"It's alright, you'll hardly feel a thing and it'll help them decide which medicine is best for you"

I poked out a finger (not that one) and turned the other way.

CLUNK!

"Oww!"

"All done, well done, you're so brave" the nurse tried to calm me. I cried and cried.

She left the room and what seemed like hours passed. My dad was growing agitated while I kept falling asleep and I was continually woken up. I was exhausted and hungry. Into the late evening, a gaggle of medical professionals appeared.

"We need to do a blood test, Paul. Is that alright?"

"No! You've already done that!"

"That was just a finger prick. We need a blood sample" the nurses gathered and my rage and panic grew.

"OK, but then can I go home?"

They nervously laughed. I was too tired to fight or even cry now. A blood sample was taken and they all disappeared again. It was very late, now perhaps midnight. A doctor appeared.

"We need to keep you in, Paul and I have to give you an injection, I'm very sorry"

The news just keeps getting better, eh?!  Too tired to fight and crying was definitely off the agenda - I was as dry as the desert.

"I'll call mum and ask her to bring your PJs. You're going to be alright" offered my dad, following the doctor out of the room after he'd administered my injection. I realise this was his opportunity to quiz him and the flock of nurses without me overhearing any bad news.

"Mum's on the way" he blurted as they pushing me down corridors towards the children's ward. "You can have something to eat and drink soon" he added.

Another finger prick happened after I arrived in my room. They kept me off the ward for some reason. Maybe to reduce my own stress? Soon after, I was granted some toast and a giant jug of water. I was feeling better. To this day, I don't know what was in that first injection apart from the obvious - insulin. Perhaps a mix of short and long acting. I thought I'd be in overnight because it was too late to let me go home and mum would take me back in the morning.

Morning came as did another finger prick. I was already becoming conditioned to them. No tears, I was just sad that I have to have another one after all the ones they did yesterday! Mum and dad were already there and they were ushered outside to "have a quick word about something".

The first time you hear your mum cry is a traumatic time. I didn't recognise it as being her. I thought someone was having a blood test or an injection and getting upset. Then I heard her muffled voice, talking and asking questions, crying some more. 

They entered the room with a different murder of nurses, including one who was dressed in normal clothing. I was about to find out that she was a DSN and was about to be told that I have Type 1 Diabetes, that it's nothing to worry about and I'll just need to look after what I eat. An education followed, books were handed over, leaflets offered. They left. I didn't think this was forever and the next injection would be my last. They went for a thigh and I kicked and screamed and made their life very difficult indeed.

"Someone is feeling better today!" I heard a nurse chuckle after witnessing the injection battle.

"Can I go home yet?"

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! AND until Jan 1st 2022 I'll be donating all your kind coffees to various Diabetes charities. 



Tuesday, November 30, 2021

Diabetes & The Vaccine Booster Hypo


Tis the season... for colds, flus and Covid. I imagine that many of you have experienced some kind of seasonal illness by now. Certainly, my own household has been through the usual coughs & colds and I imagine there will be more to come in the months that follow. We all know that colds are just going to happen. Flu, too will hit many and Covid shows no signs of going anywhere anytime soon.

Omicron, the latest Covid variant, seems particularly worrisome. I wasn't aware that things had developed beyond Delta. Time flies with Greek alphabet virus mutations, I guess. I don't know if the latest variant is more worrisome because the media have built it up to be so, if governments & scientists are using it to increase the uptake of boosters, if it's social media driven, if it's truly something to be very concerned about or if nobody knows, not yet at least.

I'm sure we'll know more in the coming weeks. Until then, booster jabs appear to be in high demand. Pre-Omi, it was very easy to book a booster jab appointment. I made one for the following day and only three others were in the queue in my local pharmacy. Yesterday, with news of Omicron plastered across all media, a booking was much harder to come by. An online booking system placed one of my household members at 450th in the queue. Last week, there was no online queue. Fear is a driver of many things... perhaps not T1D management. 

So, I've had the jab and 6 days have passed. I feel reassured by the data which indicates a strong protection against Covid illness for the vaccinated. Although, I'm disappointed by my lack of 5G despite upgrading my phone. I had the Pfizer flavour and it felt the same as my first two jabs; not very painful, no bleeding, just a little tight feeling in the outside of the shoulder. Previously, things had escalated at around 12 hours after the jabs. The shaking, sweating, feeling freezing cold, headaches and generally pretty grotty all arrived on the 12 hour mark. I expected the same and so I settled down for a night of paracetamol, drinks and the adding and removing of clothes. Nothing really happened to that extent. What did happen, was the strongest hypo that I've had for a good 4 or 5 years. 

You're a frequent reader of my waffling, so you already know that I don't get much in the way of hypo symptoms. My BG needs to begin with the number 2 before I'm even moderately aware that something isn't quite right. So, it was with great surprise to feel strange at a little over 4mmol/l - according to my CGM. Alright, I'll eat a few sweets to stop that little drop. 10 minutes later...

BUZZ BUZZ!

The screen was red and the number was 3.8. Now, I'm very grateful for the Diabetes technology that I use. It's saved me from very worrying moments and many lost hours of sleep. In this instance, I think it may have saved me from blue lights and a ride in an ambulance. Before the BUZZ BUZZ, I was feeling very sleepy and I was very close to actually falling asleep - in the back of my mind, I attributed that to the booster jab and I wasn't concerned. I'd just eaten some sweets and felt fine after all! Had I fallen asleep then I fear the outcome could've been very bad.

Let's try a finger prick

3.6 mmol/l

Few things, outside of caffeine, will stir me faster than a hypo. The shovelling of Squashies into my mouth began. I will eat three at once when low. I know that's pretty much 10g of carbs and it's easy to keep track of. I noticed, hand delving in to the packet, that I was shaking. What on earth is this!? A shaky hypo, like it's 1996? a very retro symptom.

BUZZ BUZZ DO DO, BE DO BE DO, DO DOOOO

What a cheerful sound; the sound of my CGM alerting me to a severe low. BG - 3.0 mmol/l.

At this stage, I'm swearing and eating. Sweareating? Eatcursing? Munchfuc*ery? Whatever, the Squashies were going in at pace, washed down with a tube of Glucogel.

I was soaked. Every inch of my body was sweating. I felt a combination of shock and delight. I have hypo symptoms! I can't wait to tell everybody! - Oh, yes, let's concentrate on staying alive first. My lips were numb and, as I stood to get more hypo treats from the kitchen, I noticed that my legs weren't really working. Wow! It's like every hypo symptom that I'd missed in the last 4 or 5 years had decided to visit, all at once.

Finger prick - 2.8 mmol/l

Alright, now I need help. I was alone, at home, with my son who was busy doing some gaming thing. I couldn't really walk and felt the safest option would be to call him. He brought a large glass of juice to me while I ate half a chocolate log, shaking and not able to communicate very well.

Another 15 minutes passed during which I found I was reminding myself that my pump was suspended, no insulin was going in, I had approx' 3000g of carbs on my side, it was going to be alright. 

It was, of course and eventually all that glucose lit the blue touch paper. I felt terrible and had the prospect of the booster jab side effects to come. They arrived, in the middle of the night, alongside a gut-rot which had me begging for the merciful release of death. 

6 days on, I've read some tweets by fellow T1Ds who have experienced a lot of lows since their booster jab. Maybe it's a thing? or it could just be a coincidence. To suddenly have such strong hypo symptoms, following much improved BGs (thanks to pumping) seems utterly strange. I hope they stay for a while and it wasn't just a fleeting visit. Horrible as they are, they are a great natural warning that something is wrong.

Do get your vaccine booster if you've yet to have yours. And maybe keep your hypo treats close by, just in case.

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!

Thursday, November 25, 2021

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!

Sunday, November 21, 2021

90 Days on an Insulin Pump



The 90s were definitely "my era". At the beginning of that decade, I was a schoolboy. Ten years later, I was engaged to be married. Everything in between was magnificent; the friendships (some of which still exist today), the nights out, the loves, the football, the TV, the Internet became a big thing and the music... Wow! the music. Of course, many reminisce about their teens and early adulthood and remember things through rose-tinted spectacles. Why not? Holding on to good memories can't be a bad thing. So, the 90s were important to me but you didn't come here to read my autobiography. 

90 days on an insulin pump has become incredibly important to me, too. I'm not sure I would swap the entire 1990s for this experience but it's up there with life changing events. 90 days is often the window used to monitor T1D management. Your HbA1c, TIR, hypo events and all the usual MOT bits and pieces get the once over by your HCPs for that period. I have some data because of using a CGM, some of that looks like this:

- Time in range: 82%

- Estimated HbA1c: 6.8%

- Hypo events: 7

 How does that compare to Multiple Daily Injections? I have some data!

- Time in range: 63%

- Estimated HbA1c: 7.5%

- Hypo events: 9

I am delighted by the improvement in the numbers, of course but they are a second, a distant second, to something more important. Something which, once we've accepted that Type 1 Diabetes is here to stay, becomes something we might strive for; a good quality of life.

QoL will differ from person to person because we all lead different lives. For me, it means reasonable levels of sleep, to not feel overwhelmed at the prospect of another injection, to wake up without Dawn Phenomenon ruining my morning, to be able to bolus for meals in comfort in public, to have more confidence in so many ways... to feel, dare I say, a step closer to being a person who does not have Diabetes. A baby step, perhaps given that I look like Robocop. Your move, NICE.

Ah, yes, NICE. Guidelines, criteria, a tax funded system. I know, I get it. Tax payer funded healthcare must have a criteria for various things which could impact upon the purse. So, unless you meet the current insulin pump criteria, you're going to find NHS funding hard to come by. Your health and wellbeing is secondary to the bottom line, sorry. That's the harsh reality of where we are with insulin pump access in England. All the noise and enthusiasm about Looping trials is super but you can forget Looping unless you're on an insulin pump and for that you need to meet the NICE criteria. A1c under 8.5% and on MDI? suddenly all the exciting Looping headlines don't look so... exciting.

"Keep asking"

"Keep making noise"

Oh, I will. Earlier this month, I reached out to my practice nurse and GP in regards to my switch to pumping and the barriers I am facing in getting full NHS support for it's long term use. We did have a nice exchange and I feel very supported by primary care but, of course, there is little they can do to change the decision of secondary care. Secondary care are understanding to a degree but their hands are tied by NICE criteria and a limited budget. Frustrating, eh!? This isn't a Path To Pumping blog, it's a little overview of the last 90 days, so I'm going to stop this particular subject in this paragraph. Needless to say, we are not done.

A few things have cropped up in other discussions, lately. Some questions which I can actually answer!

How does long acting insulin work in the pump?

It doesn't. The pump continually "drips" fast acting insulin. That becomes your basal. You don't notice it happening as you might not if you've ever had a drip in hospital. Your pump is programmed to give you the insulin you need, hour by hour. For a bolus, you ask it for more!

How are you rotating sites with your pump and CGM?

Legs! Although I have plenty of abdomen to work with. The CGM is a "set and forget" thing for 2 weeks, the pump cannula can then be moved around that. The pump works perfectly well on a thigh, by the way.

Are you going to Loop?

Once I have obtained NHS pump funding and Looping is embraced across the board, maybe! I know some are Looping and have more lows than me but similar numbers in other ways. I will, undoubtedly, try it. It seems inevitable and I expect numbers to be the same or better but the more important QoL will be ramped up another notch.

One of my patients mentioned your switch to Fiasp and Pumping in their appointment!

Good! Apparently, I'm an "Influencer" but I don't try to be. 

It seems that my switch to pumping has gained a lot of interest from my peers and various HCPs. As always, what works for one does not necessarily work for all. However, if you think that pump therapy might work for you then please do start the discussion. Noise will change things for the better for us all. The squeakiest hinge gets the most oil.

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!