Waking Up and Getting Up

If your brain is singing "has never been easy, oh oh..." then you're my kind of person. If you're wondering what on earth I'm referring to then search "Elastica songs" in your Google.

Sleep! Yes, that most precious of things. We might joke about the amount we get (or don't get) and even take to our socials to have a good old vent about a nighttime hypo or a stubborn hyper, stealing those much needed hours of rest. sleep loss seems very common amongst the diabetes community, especially for those living with Type 1 but is it addressed enough in clinic? it it taken seriously by our HCPs?

You might remember my Path To Pumping journey (I really dislike "journey" it feels very X-Factory) and the many avenues which I explored to get the NHS funding I needed for a pump. The appointment which resulted in me gaining funding contained a conversation where I spoke about sleep. I detailed the frequent dawn phenomenon, the higher incidents of nocturnal hypos while on MDI and how, since using a donated pump, I have noticed far more nights of uninterrupted sleep. The good doctor seemed to take that information on board and it felt great to have an HCP grasp the importance of regular sleep.

Diabetes aside, I have a wonky shoulder (not frozen) due to Osteoarthritis - that can often make sleeping difficult, especially as I'm a "side sleeper". I've learned to manage that particular complaint although it still gives me a sharp reminder from time to time. Multiple complaints can make sleeping almost impossible - I know that from talking to some of you guys and the issues you face in that dept. With that in mind and with the well documented issues caused by sleep loss, I think it's important to bring the issue to the table at your diabetes reviews and why not? If diabetes is causing you any level of distress such as frequent hypos, hypers, burnout, depression, etc then you'll probably ask your HCPs for some help. Sleep loss should be acknowledged and given some attention.

What causes your sleep loss might be a single thing but you might be so conditioned to living with it that you haven't bothered to bring up the subject. For example; perhaps you're on MDI and you're having 15 nocturnal hypos per month. So, half of your nights result in broken sleep. I know that to be a thing for some of my peers and I'm astounded at their ability to function let alone go to work the following morning. The solution could be a simple tweaking of a basal dose or a change of insulin... or maybe you'll benefit from being on a pump? which could reduce your basal dose for you at those frequent hypo times - that's what happened to me and my relatively low nine hypos per 90 days has been reduced to five or six.

The result of more sleep is profound. The main difference for me is my mood. I have always been a pretty relaxed chap but since using a pump, since getting more regular sleep, I can't remember the last time that I felt irritated by any life events and I've had a pretty testing year or two! as I'm sure most of you have. Is that related to more sleep or more stable blood glucose? I think, probably both. They're definitely strongly linked.

Perhaps your blood glucose is generally stable while you sleep? Excellent! but maybe your worries over your diabetes keep you awake? Not so excellent. Can that be addressed? Absolutely! I think most of us have tossed and turned at night because our brains are all "You made an idiot of yourself at work 24 years ago". With diabetes, you're probably worrying about more serious things. Complications? I think about those from time to time, too. There are ways to ease those worries and you might benefit from talking to a psychologist. If that seems like a big reaction then I fully encourage you to openly express your concerns to the online diabetes communities. You will undoubtedly find some empathy there and perhaps some solutions. It is amazing how often peer support brings about a positive outcome! 

Sleep is a vitally important part of life and we shouldn't live with exhaustion unnecessarily. Talk about your own sleep loss and pursue a solution, I promise you will feel a million times better about life when you're well rested.

 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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Time

Have you ever entered your diabetes diagnosis date into that online form, which gives you your estimated number of finger pricks, injections, etc? You get a nice little info-graphic to share with your peers to highlight just how many times you've pierced your own skin in the name of staying healthy. I seem to remember there are hours of sleep lost and estimated hypos, too. It's interesting, I guess, to see how quickly big numbers can build up and when you've racked up a good number of years with diabetes, those numbers become enormous.

Perhaps those numbers will be less of an issue, as more and more people seem to be moving towards technology to manage their T1D (and T2D in some cases). Changing a pump set around 104 times a year seems less impactful, and a CGM 26 times? Definitely less of a smack in the chops compared to 3500 finger pricks. The burden of diabetes is spoken about a lot and I still think that showing your burden in a simple info-graphic can help others to understand you and your condition better.

The burden of diabetes is a multi-faceted affair for me but the weight which hangs heaviest on my shoulders is time. That hasn't always been the case, though. Diabetes played a very minimal part in my life during my teens and early 20s. That is until it didn't and I woke up in a hospital bed or the back of an ambulance - it played a pretty big part, then. I've told the stories from those days on many other occasions, I won't bore you with them in this blog. Time, though! It's a precious thing. We're all born with a finite amount of it after all. It makes sense to make the absolute most of our time while we're still stinking up the place but diabetes just loves to steal those hours, days, maybe years from us. How can we minimise that lost time and maximise our life enjoyment?

I had to pause after that last sentence. I fear becoming some kind of life coach w*nker.

Let's look at the easy option; Ignore it. I don't mean completely ignore everything in regards to your T1D because you'll be struggling and gravely ill within a few days. However, doing the minimum by taking your injections, treating the inevitable hypos and hoping the hypers will go away by themselves. A terrible idea, I know, and exactly how I lived with the condition for far too long. I got off lightly, I could've easily died, you don't want to try this option. You may get away with it for a while until you don't.

A harder option; Carry on with your current management but adjust other aspects of life. You MIGHT find that works for you if other areas of your life are burdensome. So, work? relationships? toxic friends? bad habits? Cleaning up your life might be a good idea in general but it doesn't address the time burden of your diabetes and, it might be argued, freeing up more time from other aspects of life could allow diabetes to take up even more of your precious life - it's very needy like that! Pursue happy living as much as possible of course but this option feels like you'll be ignoring the diabetes time burden and will it eventually bite you on the bum? With a heavy period of burnout to follow?

A sensible option; Address it and find solutions. Start at the top! What's taking up the absolute most time in your life in regards to diabetes? Waiting rooms, probably! I jest. For me it was the finger pricking. I could see the benefits of frequent checks and I still check, today but far less often. The solution was technology. At that stage it was Flash and because I spend a lot of my waking life with a phone in my hand it was never an issue to scan a sensor - it still isn't! compared to foil wrappers, strips, lancets, prickers, meters and losing each of them at various points. Next, injections - I was injecting up to 8 times per day, pre-pump. It's time consuming stuff and, if you know me and my various limitations, eventually very burdensome. The gift of Pumpy McPumpface arrived and that burden was lifted alongside a stack of other QoL improvements.  I'm sure you'll have your own diabetes time burdens - feel free to tell me about them in the comments below or on social media.

The change from finger pricking and MDI to CGM and pump has had a profound impact on my life for the better. It also highlighted two things to me:

- Technology is a force for good and for living a better life with diabetes.

- Having more time means less burden (of course) which means less stress, which leads to great improvements in mood, sleep and general health. 

Tech won't solve all our time burdens. Hypos and hypers will happen, complications might happen, life events will always happen and they're famous for impacting negatively on diabetes! Sometimes there is little or nothing we can do but our best to get by. Others, however, can help to reduce our time burdens.

HCPs, primarily the decision makers, As your Clinical Lead has said many times! Don't block access. In the UK every T1D has the right to Flash or a CGM under the NHS. I'm astounded at stories of people being refused access to that technology even today. If your patient wants it then provide it. And pumps? You may have read about my fight for NHS pump funding (seriously time consuming!) Step away from the criteria, talk to the patient and find out why they need a pump. I promise that they didn't decide on a whim and that it takes a lot of courage to start that conversation. Even if their A1c is great, don't dismiss the idea because that's not great care. Great care considers personal circumstances alongside health conditions and A1c & TIR. Are you going to improve their long term outcome in life and not just their A1c? 

We all know that Looping will be the main treatment for T1D in the coming years and delaying access to the tech which facilitates Looping helps nobody but might hurt the patient. 

Friends and Family, You'll never fully understand T1D because, unless you have it, that's impossible. So, a great way to reduce our time burden is to not question our decision making, don't ask why we're hypo, try to avoid making us feel guilty if we woke you or asked you to help us. Talk to us when you have questions, of course but avoid 20 quick-fire Qs when we're trying to stop a severe low. Try to understand that a treated hypo doesn't mean we'll be our usual selves straight away. Our mood might change with our blood glucose level, it's probably not about you. Our medical appointments, although frequent and tedious, can be very stressful for us, try to avoid highlighting them as an issue and an inconvenience to you. Doing those things can help us to feel supported and less likely to explain, or even apologise for, each diabetes related incident. 

Peers, This one is super easy - Don't judge. That includes diets, exercise, lifestyles... everything! Don't offer negative remarks to another because they do things in their own way. It's never helpful! At the very least you'll look like a judgemental, mean spirited, bully. Live your own life, share your experiences, if somebody asks for advice or opinions well then is your chance to vent your splaining spleen. Shooting down an innocent peer can result in them questioning their management, make unnecessary changes and hiding away when they have a question and need support - all adding to their time burden of living with diabetes. Be the voice of encouragement and empathy.

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. 

BUY DIABETIC DAD (MSF) A COFFEE HERE

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The Path To Pumping - Pt.9 Trials & Tribulations

Do you remember my last blog post on The Path To Pumping? I titled that one "Destination" as it appeared that we were coming in to land. We are! We still are! Please remain seated until we have reached the terminal, etc.

You may have already read on my tweets, I've had the call! The call to confirm my NHS pump funding. It was expected to go through without any problems but it was still nice to hear the words. I'm already pumping, as you probably know, since August of 2021 but my excitement was still very real. I can only imagine how MDI users must feel when they've been waiting for confirmation. My excitement stemmed from having one less thing to worry about. What if I was refused? My next avenue was to talk to my old friends in the media and that might've been a messy experience for so many - who are trying hard to open up access to technology for more people. I'm so glad that wasn't necessary but, a week after the call, I've had time to reflect on what has been necessary to get to this position. You might already know! I've documented each step on The Path To Pumping since day one. Shall we take a quick look back at the tribulations? 

Let's start with the positive refusals. Positive refusals?! Perhaps you've experienced the "You're doing great, you don't need a pump" line? You may have even responded with a counter-argument as to why you need a pump. Did the NICE criteria wall then appear? Yeah, same. And that happened on a couple of occasions. I have a lot of sympathy for HCPs who are under pressure from all angles. I'll even open my own blog to them to allow their voices to be heard by a greater audience. I want the bridge between them and patients to be a strong one. However, I'm rarely accepting of situations which I know are wrong, could be changed or improved. My use of MDI was a far inferior therapy compared to pumping, I had the hard data to prove it and a long, long list of QoL reasons to back that up further. Positive refusals were not going to wash.

The New Year was a busy period of pump "chasing". I spent countless hours writing emails to MPs, charity advocates, commissioners and even spent some time talking to a rather senior chap in Westminster. Following my emails, phone calls, meetings and letters the response from every avenue that I explored was sympathetic and understanding of my necessity to be NHS funded for a pump. It was encouraging and, looking back, I suspect a great number of influential people will now know a lot more about Type 1 Diabetes than they once did.

Finally, a new hospital, a new consultant, a new attitude and a new outcome. The best Diabetes appointment of my life because I was listened to. HCPs might be reading this and thinking "We all bloody listen". I wish that was true. Despite my visual impairment, I am very tuned-in to body language, responses, and general tells of disinterest which can come down to a simple change in voice tone. I played poker with some incredibly bright and successful people. In time, beyond the game, it teaches you things about human beings. Some of those things, when you learn what to look for, are obvious. Humans give away information all the time without needing to talk and the stressed and tired HCP isn't great at disguising their truths. So, the greatest appointment ever? I was listened to, asked questions which were relevant, noticed I was being observed carefully and understood when I offered my experiences and views. It must feel incredible to know that you've improved the life of your patient, that you're both on the same page, that you facilitated the progress in their care and use of technology. That is surely the job of an HCP; to improve or maintain the health of a patient? Are you really doing that if you block access to technology?

And here we are, some 9 months after putting a foot on The Path. Approved. The tribulations are seemingly over and the trials are starting. The photo at the top of the page is some Omnipod gear which my lovely DSN sent to me. She was kind enough to offer to squeeze me into a pump start-up appointment. I declined because I know how busy they are right now. I'll take my turn and that'll probably be later in summer. I'm already pumping, after all! I think it's fairer to give that space to somebody who needs to start on a pump more urgently than I do and fairer on the HCPs who are struggling to manage with the demands of patients. 

I'll try out the Omnipod stuff, probably breaking it along the way. I have also been approached by other pump companies to try out their stuff. That's likely because I have some social media presence - I get it. And I'll try it! I've already played around with a few new things. The future looks very bright. 

During The Path To Pumping, I have been approached by many Type 1 Diabetics who were in similar positions or simply interested in how to start the conversation in clinic. I can't count them all, I didn't keep a tally, nor am I interested in open praise, but I do know that several are now approved for pump funding or still pushing for it. That makes my heart happy because I know the huge improvements to my QoL that pumping has brought. I hope that you guys experience a similar improvement. Still being refused? Well, you know your own health better than anybody. If you're sure that a pump is the way to go then do not accept "No" or any other bullsh*t refusal. There are ways. It can be done.

To close this blog post; The battle for access should not have happened. The "cliff notes" above only touch the surface of the work I have put into obtaining pump funding. Pump funding which was right for me, a person living with T1D, a person who probably should've been listened to more carefully, situations and health considered better, evidence read and believed, and above all an acceptance of what the future holds. Diabetes care is evolving and technology is playing a bigger part than ever before. If you're pushing tech as the next step in Diabetes care then refusing it at any point cannot be without good reason. Patients are not guidelines or criteria.

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. 

BUY DIABETIC DAD (MSF) A COFFEE HERE

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The Cure

 

I should publish this blog post on a Friday because, you know?! Friday I'm In Love and all that. Fortunately, this post isn't about 80's bringers of cheer, The Cure. No, we're talking T1D cures because, like all good Diabetes bloggers, I'm a topical content whore.

You've probably noticed some of the chatter following the £50 million donation by The Steve Morgan Foundation jointly to DUK and JDRF (UK). If you missed it then it looked something like this:

Steve & family spoke about the donation on BBC Breakfast alongside charity reps and social media got giddy. Rightly so and, do you know what?! it was lovely to see some positive words and hope from the online community. Not that we're a moody bunch but, in general, we do usually have more to complain about than celebrate.

So, it's £50 mill over 5 years. "5 years" ? Sounds familiar but this time there is a firm sense of hope. I truly hope this is the tipping point, the seed, which sprouts a cure in the years to come. It is a hugely generous gesture and as a Diabetic who is nearing middle-age, I will be delighted for those with less miles on the clock than I, as well as the lifting of burden for myself, should the news break.

£50 million, eh?! You could nearly buy a footballer for that! It does beg the question, has a lump of filthy lucre been the issue since Day 1 of research beginning? I know that charities are always asking for funds but has one big hit been holding everything back? That would seem like a terrible shame for those who have lived with T1 for many years, those who are no longer with us because of the condition and those, like me, who have been touched by complication's frosty grip. Perhaps that's something for a later date. Until then, boffins get boffining! Bring us good news and if it takes 5 years then I'll get Steve Morgan's face tattooed on my back.

Speaking of tattoos! I'm screwed. You've seen the one on my arm, right? I show it off at every opportunity because I think it looks cool and I'm proud of overcoming my hiding of the condition and letting it dictate my life to me. Now it belongs to me, that's what the tattoo shows. And it's kinda useful if I'm unconscious and the medics spot it. What do I do with that? I'd probably add "Former" above it and "See back for details" whereupon you'd find Steve's face. Yes! I think that's a plan.

Back to curing. A cure is a subject which I've avoided for a long time. The trash in newspapers and on the Internet has left a sour taste in my mouth when it comes to that discussion, yet it's a valid subject. You might argue that it should be the primary subject until it's found as it would eliminate everything else we deal with in relation to T1D, complications from living with it aside. As I sit and smash my fingers into the keyboard for this blog, I find myself drifting off for a moment to imagine not having Type 1 Diabetes... it's weird! How do you freaky non-diabetics do it? Eating without bolusing? I mean... WTAF! I don't know if I could do that, man ;-)

I guess that now we wait. I'm closing in on 4 decades of waiting. Some of you far more, some of you very recently began marking time for a cure. I encourage all of you, no matter where you are on your T1 journey, to never give up hope on a cure. Until then, push for what you need! CGMs, pumps, insulin, appointments in the flesh, etc. Keep those HCPs busy because if a cure comes they're going to miss us.

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. 

BUY DIABETIC DAD (MSF) A COFFEE HERE

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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!

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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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Peer Judgement

I've been a vocal advocate of peer support within Diabetes for a long time. It would be strange, in my position, to not be. The list of support, help and friendships offered to me has been incredible and I'll be forever grateful.

Alongside my peer support gushing, I have been deliberate in my attempts at trying to warn others about the potential pitfalls of engaging with peers within Diabetes circles. The ugly side of peer engagement rarely sticks its head above the parapet fortunately but it is there and as more official avenues of care begin to recognise the positives of peer support, I think it is very important to have a firm safeguarding and vetting procedure in place to at least minimise, if not eliminate, the possibility of damaging engagements between people living with Diabetes.

The Internet is a wild place. Anybody can create accounts and spout all kinds of hate, extreme views or health damaging advice.

"He's clearly not using the technology correctly..."

"Perhaps his grocery bill would be lower if..."

"The truth hurts" - A personal favourite of the peer judges.

Those three came from one person, a person who lives very locally to me and who (at the time) was claiming to be an active volunteer for Diabetes UK. He wasn't a volunteer, of course and it became apparent that he had aired his views about others' Diabetes management across social media resulting in various bans and outrage from other peers.

I think the great thing about Diabetes Twitter is the unquestioning welcoming and support of new people. I hope that remains because we were all newly diagnosed and frightened, once. I hope that remains despite the recent welcoming of an individual who claimed to be a student nurse, recently diagnosed with T1D. Tonnes of love and support from various quarters arrived in his life. At the same time his true colours became apparent. The colours of a racist, ableist, liar. The Twitter community noticed and large numbers were quick to express their displeasure before turning their back on that person.

This week, I passed the two month mark in my pumping journey. It's been great and I felt very encouraged by the real life changes as well as the improved numbers. I tweeted my numbers for a comparison to my life as a Diabetic on MDI. Much positivity followed until this reply:

"So clearly not worth having such an unsightly pump?! What gets to me is how damn ugly & unsexy all related to diabetes is!"

I did reply, later on but when I read that response I was angry. I was angry for others more than myself because I'm a man in my mid 40s and, after living a life with disability, I am almost numb to hurtful comments. I was angry for the newly diagnosed, the children, the impressionable, the low on confidence... I can't imagine how the teenager felt, after starting pump therapy recently, once they had read that response. How would you have felt? So, I didn't reply immediately. I retweeted the comment and invited others to share their views. It's a few days later, now and their tweet is still attracting replies. I think that underlines the strength of feeling and the general dismay.

What does pop up occasionally, if I've highlighted something which is horribly offensive, discrimination or possibly damaging to the health of others is the old "They're allowed an opinion" response. Sometimes dressed as freedom of speech and sometimes with a heavy hint of accusation with a #ThoughtPolice hashtag. Here's the deal; If a person responds to something you've done or said with words that express offense, that they feel discriminated against, that they're worried your words or actions could be damaging, then it's probably not for fun. It takes bravery for a person to call out these things. Then it's down to you to take a breath and consider if they have a point, was it a misunderstanding you can clear up or do you need to re-evaluate things? Perhaps even apologise!? I think everybody should be free to express themselves if that expression is not going to cause distress or damage to another person or persons. That would seem to be a reasonable, kind way to live and engage with others.

Words which struck a chord with me came from Dan Newman (@T1D_Dan) when the subject of harassment came up during an online conference. Dan said that if you read something which you don't like then simply block that account. He's right. You're not obliged to respond to anybody and your only duty on social media is to that of your own well being. You may be questioned, I certainly have been, about why you've blocked X, Y or Z. You don't owe any explanations to anybody. Do all your social media in a way which is comfortable for you and not others.

It seems that peer support could be a part of your Diabetes care through the NHS in the future. To the decision makers, the leaders, I encourage you to tread carefully by vetting each person you enlist, reading their social media and asking others for thoughts. If you offer somebody a job then you ask for references, don't you? and to everybody else online or otherwise; Stranger danger. 

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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The Path To Pumping - Pt.2 The Gift

'Are you pumping already? That was fast!' Well, yes and no. No, as I write this but hopefully Yes within 24 hours of publishing and once this blog goes viral. What? I go viral! Some of my tweets get like... 8 Likes!

Welcome to Part 2 of The Path To Pumping. I've titled this one "The Gift" because that's exactly what you see in the photo above. I'm a firm believer in "Pay it forward", especially in relation to Diabetes. That's not because I'm trying to buy my way into the good books or affections of others. It just feels good to help others who need it. It's a great form of peer support and paying it forward can come from gifting or loaning equipment, such as a pump or just sharing your knowledge and experiences. This blog is also dedicated to my friend for making a monumental effort in gifting me this pump, one of the kindest and hardest working people you could ever meet. I am truly blessed.

So, how does this impact upon me getting a pump through the official NHS channels? I'm still following that route and the ball is firmly in the court of DAFNE. If you've followed some of my tweets then you might know that getting an appointment there hasn't been a smooth process. Following my Diabetes review and agreement to attend DAFNE as a gateway to pumping, a letter arrived in the post which invited me to make a registration appointment to find out about the course. K, can do. I sent an email to no response. After 2 days, I sent a follow up email, stressing that the clock was ticking on arranging this appointment and being appreciative of a soonest reply. The NHS letter stressed that I must arrange an appointment within 2 weeks. Sadly, no response. Perhaps emails aren't routinely checked. I still have a week until my deadline at this stage. I let the weekend pass and then I tried a phone call on the Monday morning and voicemail picked it up. I left my details and politely asked for a call back, again expressing concern that this is a time sensitive appointment as noted in the letter. No return call happened and I tried again at 4.30pm, around 7 hours later. No ringing tone, this time just straight to voicemail. I hung up, not wanting to leave multiple voicemails about the same issue. Tuesday arrived. Tick-tock. Just before midday, I called again and finally spoke to a real person! Apparently, she was going to call me back. We arranged the registration appointment (telephone) for late September. 

So, that's that. But, not really. After making noises on Twitter, it became apparent that education/training isn't necessary for access to technology. I shouldn't need my GCSE in DAFNE to be offered pump funding. The temptation now is to refuse the course, dig my heels in and start quoting NICE guidelines. But! I'm a Joe Bloggs Diabetic, the everyday chap with T1D who has walked in, off the street because he's heard that pump therapy might make his Diabetes management better, provide a better long term outcome and reduce his day to day burden. I'll take the course because that's what the Joe Bloggs Diabetic would've been advised to do, what I've been advised to do. What you may be asked to do. Not everybody knows about guidelines or the right people to follow on Twitter.

Enough DAFNE, for now. 

The pump!

Right, I've loaded my small and over-worked brain with information, I have support from friends and anonymous HCPs. I'm ready to go! When my Lantus isn't on board., which'll be tomorrow morning. Today, I'll be checking and double checking and probably Zooming with pumping friends to be sure that I'm not going to make an enormous balls up. Assuming all goes well and things are settled, in a few weeks or maybe months I will investigate Looping through this pump but that's something for the future. The now is for getting used to pumping and not injecting anything. The very thought of not injecting insulin is completely alien to me. I do that approximately 60 times a week. I've never smoked but I wonder if this going "cold turkey" from injections might be similar. Old habits die hard and all that.

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 Cost of Hypos

Do you remember the "sugar tax" of a few years ago? Our favourite sugary drinks, the life-saving drinks which we used to treat hypos, suddenly became less sweet. Lucozade, Ribena, Vimto and the other teeth rotters became less attractive or pointless if you wanted to treat a low blood sugar. Lucozade clung on to a good chunk of its glucose but it was still much reduced, meaning more would need to be consumed (and bought) to treat a hypo than before the days of the sugar tax.

Today, news reports have highlighted that an independent review of the food that we eat should be subjected to further taxes, specifically sugary and salty food, and vegetables should be prescribed on the NHS.

The story is here if you'd like to read through it.

That story aside, it has made me wonder what the cost of hypos are. I don't mean the physical exhaustion, stress and anxiety. I'm talking cash, moolah, filthy lucre. Just how much does a hypo cost? In an ideal world, nothing. Gluco Gels are available on prescription and assuming you only need 30g of carbs (3 x 10g tubes of glucose) to treat your hypos per month (my allowance) then you're golden, hypos will cost you nothing as a Type 1 Diabetic. Meanwhile, back in the real world, here are my hypo stats for 2021 so far:

At the half way point of the year (183 days, 26 weeks) I'd had a grand total of  74 low blood glucose events.  That's just under 3 per week. Of course, that fluctuates depending on a seemingly infinite number of variables but let's assume an average of 3 per week, rather than the days before CGM alerts when my hypo numbers were almost double that amount.

Hypo treatments and their costs will vary. I don't eat and drink the same thing in the same amounts for each hypo. So, what's the most common treat for me? Squashies and Lucozade! Let's do some pricing up:

4 x 330ml bottles of Lucozade are £2.70 (68p per bottle)

1 x packet of Squashies is £1.00

I conservatively estimate that I will drink half a bottle of Lucozade and eat around a quarter of a packet of Squashies for a hypo. Again, that will vary depending on many things but as an average I think that's a reasonably conservative amount. An average hypo is costing me:

34p in Lucozade

25p in Squashies

59p is no big deal, right?

3 hypos per week, though. Alright, £1.77 per week. 

Oh, £92.04 per year.

I've had T1D for almost 37 years. £3,405.48

Perhaps I'll still be here in another 37 years. £6,810.96

Remember that my hypo frequency was once double what it currently is? Yikes!

Suddenly hypos are starting to look like expensive events, over the course of my life. I could probably buy a weeks' groceries for what I spend treating a hypo over a year. And now a proposed extra sugar tax of 15% - 25%?

I know that my hypo events are a tiny number compared to some. I wonder how much your hypos are costing you? and do you agree with the proposed new sugar and salt tax? Let me know.

 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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Death & Taxes

The two unavoidables, apparently. So, there's a cheerful start to this blog! June was a strange month for me. New things happened and not all of them were fun. 

Let's get straight to it and given that the header image is of a shoulder X-ray I'll focus on that. You might have read my brief tweets in regards to my shoulder X-ray results. You might have even heard me suggest that I have the dreaded Frozen Shoulder, which visits many people living with T1D. That became in doubt after a few months and eventually I was sent for a low dose of radiation.

After removing my top because "You're not allowed buttons on an X-ray" the enthusiastic HCP zapped me a few times in various positions and told me to check back with my GP in about a week. Can do! Did do! Yesterday, in fact. 

After some note checking, Dr MyMumHasType2 declared that I have some mild degenerative changes which translates to Osteoarthritis. A diagnosis is a strange moment. You probably remember that moment because you have Diabetes or you know somebody who does (or you're just here because you're attracted to middle-aged men with body parts which are increasingly breaking down, Hi! How you doin'?). Whatever. That moment might result in that little voice in your head exclaiming something which rhymes with Clucking Bell. If you verbalised your Clucking Bell then you have my huge respect, well done. I did not. I left and did some online searching. Of course I did! Isn't that our default route when delivered new health-related news?

I've digested, I've tweeted, some of you have the same condition for which I offer my fullest feeling of your pains, brothers and sisters. And today? I'm alright with it. My shoulder is in relatively good condition and that gives me hope for some physio and maybe some tremendous pain relief to keep the screams of agony away for a while. At least until I need to remove another Libre.

The unavoidable? 

As my friend told me, soon after the news, coating their thoughts in razor blades rather than sugar: "You're getting older" which was almost as sympathetic as friend no.2, of a similar age, who declared: "Yeah, we're both f***ed".

I have the best friends.

However, aging is unavoidable. You can't escape the passing of time as I've learned from watching Prof. Brian Cox, of a Sunday evening. And you can't avoid the ultimate health complaint. Sorry, not very cheerful again. I also think it's the fortunate minority who go from cradle to the grave without a single health problem. Some problems are clearly more serious than others and I think a little crumbly shoulder isn't high on the list of the possible problems which I could face. So! As always, I'm grateful for the amazing NHS, who have tried various things and treatments and will continue to support me and make that particular complaint as small of an issue for me as they can.

Taxes?

That's enough doom and gloom for one blog! 

 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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Incomparable - Oh, We Are Not The Same

 

Isn't it strange when we're told "We're in the same boat"? Not just in relation to Diabetes, but any given situation in life. It seems like such a lazy way to show empathy to me and it always has done. It's a phrase that is thrown around by people who I believe struggle to adequately relate to others and when a similarity happens it becomes their "go to".

Oooft! pretty harsh opening paragraph, sorry. I actually find the use of the phrase to be quite offensive and belittling of my own struggles in life. I relate to the issues Type 1 Diabetics face, of course. Many of which are indeed very similar or as near to being the same as they can be. Many are very, very different.

I think it's good to have an understanding of differences in regards to T1D, primarily because I think it's dangerous to assume we can all reach the same "goals". HbA1c, TIR, hypos per month, etc all have targets. The targets (which have been moved many times during my time with T1D) are considered the best way to live a healthy life with Diabetes. That might be right, who am I to argue? I do think the right approach to setting targets is to make them tailored to each person, taking into account personal circumstances, history, other health matters and frequently experienced problems for Diabetics such as burnout. I believe the engaged HCPs do practice that.

Should we scrap the 6.5% HbA1c and 70% TIR generalised targets and focus on individualised care? 

It's interesting to see an HCP cite an A1c as "A record" for them, on social media. Of course, such a Tweet got the attention it deserved. It did evoke memories of an appointment at Diabetes clinic, many years ago. On this rare visit, at some point in the mid 1990s, my then consultant referred to a different patient by their first name, as the person who he saw before me. Offering an "inspiration" to me, Dr X told me about the previous patient's HbA1c and how long he had been living with T1D & how I should easily achieve the same numbers if I worked harder.

Things have changed, I think. Haven't they? Perhaps not, if an HCP feels the urge to take to Twitter with such exciting news. Perhaps things are better but not entirely? Or maybe I'm being too kind? Certainly, my own experiences in clinic have been vastly improved on those of 25+ years ago.

You're probably reading this because you have Diabetes or you care for somebody with Diabetes. I could ply your eyeballs with inspiration for several paragraphs. You might even feel hopeful because of that. Instead, I'll try to keep it brief: You're never going to be a perfect diabetic. You'll have great days, days when you feel you absolutely own this condition, days when you check your blood glucose and your internal voice screams "Who's the daddy now!?". You'll also have days of despair and everything in-between. If you decide to engage others in Diabetes communities, such as GBDoc, you'll find differences in how others do things, how things work for some but not others, how we're not actually all in the same boat or sailing the same seas. We're not even facing the same storms. We're just trying to survive in our own ways, living our own lives and that's the only true identical thing which people living with Diabetes share.

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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