Meeting Diabetes Peers

 

Another peer support blog? Kind of! But without the warnings, the concerns or possible problems. I'm going to focus entirely on the positive. Yes, I'm feeling alright.

I think we've reached a stage of twitchiness. 18 months of pandemic and avoiding the general public has been hard work and I say that as a pretty "happy to be alone" sort of chap. The horribly named Freedom Day signalled that it was time to interact a little more without the aid of Zoom or other video call apps. I've tried it a few times, now. Wow! have I missed it. The old saying of "you don't miss it until it's gone" really has applied when it comes to meeting my peers from the world of Diabetes.

Last weekend, a bunch of Diabetes and GBDoc folk & families met up to celebrate the 50th birthday of GBDoc Queen Jules. It was an outdoor event and, despite a brief rain shower, it felt entirely comfortable and Covid safe. It was fantastic to see familiar faces alongside a few new ones and I regret having to leave early, missing other great individuals from the Twitterverse. It was nice to see such interest in the event, despite it being a semi-invite only thing - as much as you can have an invite only event in a park. The majority of people responded to the messaged invites sent by Beth (Diadarl1) and myself and I know that Jules was very appreciative of those who RSVP'd without her chasing up.

Never been to a meet up? Neither had I until 2018. My Twitter persona might indicate otherwise but please don't assume confidence from a written word. I'm a quiet man and still suffer from social anxiety but to a much lesser extent than 3 or 4 years ago. Those early days of meeting my peers greatly reduced that social anxiety. Subsequently, I've hosted a video podcast, video quizzes, gave interviews to the media including BBC radio, took part in JDRF Fusion and stood in front of a room full of business people to talk about my CGM. All of those things and possibly others in the future (wink, wink!) are reaped from the seed sown at that first Diabetes meet up. Are you still undecided about meeting your peers? 

It's not all Diabetes, you know? Seriously, it's not. Everybody might be wearing Eau De Banting and there might be a hypo or two knocking around but the conversation isn't all Diabetes based. Don't worry about being bored, I never have been, just talk to your favourites from social media. You might have a question or two so just ask! I will be...

...and that'll be at the next "meet up" which is going to be much smaller in size but equally as glamourous as a park. I'm heading North to meet Dawnie (Moodwife) who is heading South to talk about pumping and looping and possibly coffee. The subject, for me at least, is exciting enough because I'm attempting to move from MDI to pumping which will likely lead to looping and to learn from your peers is the greatest education. It's also massively exciting because it's Dawnie! C'mon! 

And on we go. Talk is of other get togethers in other areas of the UK for GBDoc. I hope such talk bears fruit and I can meet others from this amazing community. Did you see the TAD announcement for March 2022? Maybe see you there! and at many other things for years to come.

I told you this would be a positive 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!

BUY DIABETIC DAD A COFFEE HERE

Quack, Quack!

I'm afraid that you have Type 1 Diabetes. Have you tried a leech on your pancreas?

Before I get into it, today. I'd like to address the lovely comments and discussion that surrounded my last blog; The Path To Pumping Pt.1 Over 1,500 of you have read that and I'm astounded by that figure. I really will be following that up in the coming months.

Alrighty then! It's 2021 and Quackery is alive and well. It might even be thriving! Last week, my blog was spammed a total of 18 times from an individual in Ghana who promised cures for pretty much everything, ranging from Herpes to HIV. Diabetes got a mention, of course. Fast-forward to today and something involving salmon placentas and stem cells arrived in my inbox. Those aren't the only incidents, either. Throughout my time using the Internet, some 26 years, that kind of quackery has been an almost constant event. 

I think I'm well enough informed to never have fallen for such nonsense even in the early days. It's persistence and longevity does worry me, however. If there was never a buyer for such ridiculous advice then there wouldn't be a market. Since the dawn of the Internet, I wonder how many desperate people have become seriously ill or died from the advice of Quacks? It's terrifying to consider.

Not all advice is quackery, of course. Mansplaining, for example isn't usually a money making exercise. A keyboard and an urge to feel important and knowledgeable is enough motivation. Incidentally, men rarely mansplain to me. Make of that what you will. Advice, even in well meaning forms can be a dangerous thing. As Diabetics, we administer dangerous drugs to ourselves and just a small miscalculation can have dramatic, perhaps fatal, results. 

When it comes to the Internet, especially social media it's still the Wild West for medical advice. There are warnings on some platforms when keywords are picked up. Covid is a great example and Facebook appears to be taking some notice to SOME problems surrounding dangerous advice. Twitter is not and that's really disappointing. It's easy to report tweets and accounts for lots of terrible things but when it comes to dangerous, misinformation around health? Nothing. It's left to us as Twitter users to decide on what is correct and good information and what might put us in our graves. That needs to be addressed as a matter of urgency. Stronger content policing would serve social media platforms and the users well but if that will happen is debatable. Why? Well, content means views and views mean ad' impressions. Impressions mean income. Are the social media platforms really interested in taking care of us or taking care of their shareholders? 

I feel the eyes of the Freedom Of Speech brigade, muttering something about the "Thought Police" because they can't grasp how their bright ideas expressed through the Internet might damage others. They likely never will. Did anybody change their opinions and admit to being wrong on the Internet?

I think the Internet and social media are great places to get wonderful information and support. They're imperfect, of course and so is general society. I encourage treading carefully when it comes to your health and online advice. Would you listen to a stranger in the park in regards to your insulin dosage? I didn't think so. What's different to the stranger on Twitter?

I feel like this little blog has become a public safety information message which the majority probably don't need. If nobody was buying those pancreas leeches, though... 

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

The Path To Pumping - Pt.1

It must've been during one of the last Diabetes appointments for me at my old clinic, before I threw my toys from the pram and transferred all my care to my GP, because the memory of the event is very hazy. The numbers weren't looking great, I wasn't feeling great, volunteers were wandering around and making small talk - which added to my tension and it was waiting room temperatures in there. 

"We could try you on a pump"

Have something attached to my stomach? 24 hours a day!? The idea was dismissed by me immediately and probably not in the kindest of tones to that HCP. What an idiot. 

Here we are, probably 20 years later, and I would crawl through fire to trial an insulin pump. In fact, what I've agreed to do might feel like crawling through fire but I'm going into this with an open mind, a clean slate, no judgements... at least none that I'll verbalise until it's over.

I got pump-curious after meeting so many #GBDoc folk, hearing their stories and wondering if that might work for me. I've carefully listened to their joys and woes and after many tweets and many messages I decided to make some noise about it to my consultant. We'd spoken about it in 2019 but my A1c was great, I wasn't really struggling with anything which might make pumping a priority and I felt the appointment time would be better served by bringing up Libre access. So it proved, although Libre funding wasn't straightforward and took some intervention by Prof. Partha Kar to make it happen.

This time! There will be no name dropping, string pulling or threats (just kidding). I'm going through the process as an ordinary Diabetic. I am, after all, an ordinary Diabetic as I've mentioned many times. I'll create a blog for each step of the process in moving from MDI to pumping, you'll hear about everything and this is Part 1.

The conversation with my consultant went exactly how I want every appointment to go. I know that I'm doing alright, I'm getting by, and once that had been confirmed I brought up the subject. I know it's not a case of ask and you shall receive with the NHS. The money pot is not an endless one and criteria has to be met and I think that's fair enough. I'm not here to abuse the system. I genuinely think pumping could take my T1D management to the best place it could be and here is why:

- Dawn phenomenon

- Impaired hypo awareness

- Injection burnout

- MDI & CGM (or Flash) use has reached it's limits in improving my Diabetes management

and a quick look at the details for those four points? Sure, okay. 

There is only one Phenomenal Dawn and that's @MoodWife. Dawn Phenomenonononon is really annoying and has begun happening to me more frequently despite Basal changes and tweaks. It's affecting my Time In Range and increasing my average blood glucose level and, of course, my HbA1c.

My hypo awareness is cancelled. In the last 5 years, I've gone from feeling hypo at 6mmol (when my BGs were too high) to feeling hypo at 4mmol (Yay!) to feeling hypo-ish at 3mmol and only having the strong feels when the number is low 2mmol. Worrying stuff, right? I'm glad I'm CGM'd up to the eyeballs and that I have alerts for falling BG otherwise you may have seen dramatic images of me in hospital. My hypos tend to happen when I'm asleep and my alarms usually wake me. However! sometimes they don't until things are very urgent. Worrying stuff again, right? My overnight BGs are a mess and it would be wonderful to have a pump provide more stability.

I inject at least 7 (SEVEN!) times per day. That can rise to 10 if things are really bouncy! and I'm becoming increasingly tired of the burden of it all. The idea of changing a canula twice in six days, compared to possibly 60 injections in that time, sits very pretty in my mind. That would represent a huge decrease in my Diabetes burden and a better QoL.

My overall management of my condition is very good. "You have very good control", said my consultant. I know, I'm kind of a big thing. I have many leather-bound books and my apartment smells of rich mahogany. 60% of the time, it works every time... I'll stop with the Anchorman stuff now (watch the movie and think of me). I know that I'm doing alright but I know it could be better. It can't be better with my current therapy. That can only happen via technology or I will likely suffer from burnout by trying any harder.

So, those points were put across and! it seems I'm good to go... good to go to DAFNE. Remember earlier when I mentioned crawling through fire? That's right! It's DAFNE time. Deep breaths. I know that it's been a great thing for many of you and in the interests of peace and ticking a box and being an ordinary Diabetic, I'm going to go through with it. And that's where I am, right now. I'm waiting for the call from the DAFNE lady, who I really hope is called Daphne, to begin the training process. When that happens I will publish Part 2. I bet you couldn't be more on the edge of your seat.

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

BECOME A BLOG MEMBER

GET MENTORING SUPPORT FROM DIABETIC DAD

Prefer PayPal?

BUY DIABETIC DAD A COFFEE THROUGH PAYPAL

Representation

 Diabetes in the public eye has to be a great thing, right? A diverse representation of all types of people can only reduce division, hate and normalise disabilities, including Diabetes.

Coronation Street got the Type 1 ball rolling a few weeks ago and last week Pixar joined the Diabetes party with a character in their Turning Red movie, seemingly wearing Diabetes devices. Both great things for Diabetics, particularly the Coronation St character as it appears they'll be focusing on the condition more than the Pixar movie's passing nod towards it. I hope the Coronation St character will be allowed to develop in the coming years and the difficulties of living with T1D are brought to the public attention, at least the public who still watch that particular soap opera.

Beyond the recent TV and movie rep', I've been thinking about others who have proudly acknowledged that they have Diabetes. In the mid and late 1980s, as a young boy, my only "Celebrity Diabetic" was Gary Mabbutt. Gary played for Spurs and was capped by England and he is still well known in Diabetic circles today, particularly football fans. That was it, for me. I'm sure there were others but Diabetes was a much less visible condition beyond the Diabetes clinic at the hospital.

Technology has made Diabetes a visible, talked about thing. It's forced the hand of Diabetics to become that bit more public about their condition. A pump, CGM or even a small Libre disc are physical signs which are often hard to hide compared to the sneaky finger pricks and injections, done covertly or behind closed bathroom doors. Perhaps we have more to thank technology for than simply improving the management of our condition? It's out there! WE are out there!

Not everybody uses technology, of course (despite what you might see on social media). Perhaps some will still hide it because years of conditioning can take a long time to overcome. So, representation is important in other ways. Representation by the masses (our peers) is increasing and I believe that is the most important way to have Diabetes seen by the general public, a general public which still struggles to understand types and which holds ideas of Diabetes, that are ignorant and harmful, firmly in their minds.

How you represent is individual to you, your life and your comfort zone. I speak and write about it in various places and I choose to do so using what I consider to be an effective method. Your methods might be different, of course. What is important to you in regards to Diabetes is almost certain to be different to me and others, too. A brief look through Twitter will reveal a variety of subjects, pushed as hugely important and they may indeed be that to a minority which could include you, or other aspects of Diabetes might be higher on your agenda of importance. What is important for us all is to talk about Diabetes, type if you wish, specific things relating to it if you wish, openly.

Social media is an easy place to air views and share your experiences. It's an easy place to represent D. If that's your comfort zone then embrace it and go to town! It can have a surprising, positive, effect. I'm astounded at the positive comments which have been sent my way in the last couple of years since growing a social media presence. All I do is share my experiences and views while engaging with my peers. 

We don't always agree, either! and that's an important part of life, too. To accept that others have their views and opinions on their own condition and health and subjects relating to it. It's important to not turn those times into arguments, to not bully or name-call or reduce yourself. The people who do that are not helping to represent. Using aggressive, "industrial" language does not help to represent - Do you want your children to read frequent use of the F word? Your choice, of course! I'm far from a prude and I have certainly used foul language and a harsh "tone" before. Within Diabetes, I try to keep it family friendly. That's not because I'm focused on engaging with families. It's because it's much harder to alienate or offend anybody of any age when the language is PG and the tone is soft.

I encourage everybody living with Diabetes to share their views. Talking about it is great representation for your peers and yourself. It's normal to have a health condition or a disability. Don't hide.

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

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!

BUY DIABETIC DAD A COFFEE HERE

Size Matters

 

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

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

Yesterday, I tweeted the image below:

And I asked "Can anybody see the problem?"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

BUY DIABETIC DAD A COFFEE HERE

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!

BUY DIABETIC DAD A COFFEE HERE