The Power Of Sharing

In the world of diabetes management, every day brings unique challenges. Yet, through the power of advocacy and awareness, individuals with diabetes are finding the strength to face these challenges head-on. This blog post revolves around a compelling story shared to me by an online diabetes peer, which beautifully encapsulates the impact of diabetes advocacy and the resilience of those living with the condition.

Our peer shared a moment from their life that unfolded during a seminar. It was a day like any other, but their insulin pump had other plans. It malfunctioned, resulting in high glucose levels—a situation that can be unsettling for anyone. Instead of feeling embarrassed, this individual demonstrated remarkable composure. They calmly injected insulin and replaced their pump set right there in the room, without leaving or excusing themselves. In their own words, they did it "like it's a normal thing...which it is apart from injecting."

Here is their message, shared with permission: 

This story carries a profound message, not just for people with diabetes but for everyone:

The Power of Advocacy: The online diabetes community, along with dedicated advocates, has played a pivotal role in raising awareness about diabetes. Their efforts have contributed to a more informed and understanding society, allowing individuals like our peer to feel supported and empowered.

Breaking Down Stigmas: Our peer's ability to manage their diabetes openly and confidently challenges the stigmas surrounding the condition. It exemplifies that dealing with diabetes, even in unconventional situations, should be normalised and accepted.

Self-Empowerment: This story is a testament to the resilience and self-empowerment that individuals with diabetes can cultivate. When people understand that diabetes is a part of life but doesn't define it, they can confidently manage it without feeling the need to hide.

Inspiration to Others: The courage displayed by our peer serves as an inspiration to me and I hope others in the diabetes community. It shows that unpredictable moments can be met with grace and that diabetes doesn't have to hold anyone back.

The Importance of Preparedness: While managing diabetes is a day-to-day reality, moments like the one our peer experienced highlight the importance of preparedness. Knowing how to handle such situations and sharing this knowledge can benefit the entire community.

This story is a testament to the transformative power of diabetes advocacy and the resilience of those living with the condition. Through advocacy, we can break down stigmas, inspire self-empowerment, and encourage a sense of normalcy in managing diabetes. Our peer's experience during that seminar is proof that, with the right support and awareness, individuals with diabetes can confidently navigate even the most unexpected moments with confidence, ensuring that diabetes doesn't define them, but rather, becomes just another part of their remarkable lives. 

I talk about my diabetes a lot and I do that simply to share my experiences. Remarkably, that simple act can have a hugely positive impact on others. I strongly encourage you, reader, to share your own experiences about diabetes. 

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Combating Stigma in Diabetes Online Content

In today's digital world, the internet has become a significant source of information and support for individuals with chronic conditions such as diabetes. However, despite its many advantages, the online sphere is not immune to the perpetuation of stigma and misinformation surrounding the condition. You may have read a lot about stigma via your social media platforms of late. I apologise if my own content has been focused on that subject. However, I do believe it is a hugely important issue and one which can be addressed within the general population. I understand that to many of you stigma is not the most exciting subject to read about. Indeed, some of you may have never experienced stigmatising content. Stick with me, have a read, it will only take a few minutes.

So, we know that diabetes is a chronic condition that affects millions of people worldwide. It is characterised by the body's inability to properly regulate blood sugar levels. Unfortunately, diabetes is often associated with stereotypes, misconceptions, and blame. Stigma arises from these preconceived notions and societal attitudes, resulting in discrimination, shame, and psychological distress for those living with diabetes.

The internet has revolutionised the way we access and share information. It offers a wealth of resources and online communities, such as #GBDoc, that can be immensely beneficial for individuals with diabetes. However, the online sphere is also a breeding ground for stigma and misinformation. Many platforms lack proper oversight, allowing harmful content to spread unchecked. As a consequence, diabetics often face an uphill battle in navigating the online landscape, leading to increased anxiety, self-stigmatisation, and poor mental health.

Stigmatising content can have severe consequences for individuals with diabetes. It not only perpetuates harmful stereotypes but also hinders our ability to manage the condition effectively. Stigma may discourage individuals from seeking necessary medical care, adhering to treatment plans, or even disclosing their condition to others. Consequently, this can lead to poor glycemic control, increased complications, and a diminished quality of life.

To combat stigma effectively, it is crucial to empower individuals with diabetes through education and awareness. Creating and promoting online content that accurately represents the realities of living with diabetes can play a pivotal role in challenging misconceptions and dispelling stereotypes. At #GBDoc, we recently launched the #StopTheStigma campaign to do precisely that. By providing evidence-based information, sharing personal experiences, and embracing empathy towards others, we can reshape the narrative around diabetes and create a more inclusive online environment.

Online communities such as GBDoc can serve as a lifeline for individuals with diabetes, offering support, validation, and a sense of belonging. These communities should prioritise the creation of safe spaces that are free from stigma and judgement. As a volunteer, I work hard to ensure everybody feels safe to engage in and express themselves in the communities that I am a part of. If you notice or experience otherwise, just let me know.

Healthcare professionals CAN play a crucial role in combating stigma surrounding diabetes. By staying updated on the latest research, guidelines, and treatments, they can provide accurate information to their patients and the general public. Sadly, there are some HCPs with a different agenda. I strongly encourage diabetics of any type to avoid engaging with or acknowledging HCPs who are promoting diets or lifestyles via a subscription based service. There are a few of those guys kicking around, even in the UK!

Additionally, healthcare professionals can actively engage with online communities, offering expert advice, clarifying misconceptions, and addressing concerns. By bridging the gap between medical knowledge and the online sphere, healthcare professionals can become allies in the fight against diabetes stigma.

Despite it being 2023 and despite many words of advice and correction, stigma surrounding diabetes persists in online content today, creating barriers for individuals seeking support and information. However, by recognising the impact of stigma and actively working to combat it, we can create a more inclusive and supportive online environment for individuals with diabetes. Through education, empathy, and the promotion of accurate information, we can break down barriers, empower those affected by diabetes, and contribute to everyone's overall well-being.

I'd like to ask you all to share your experiences of stigma on your social media accounts. If you can, post that content where people could benefit from learning about stigma (where people without diabetes might read it) and use the hashtag #StopTheStigma. Raising awareness has the greatest impact among the unaware.

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The Importance of Diabetes Community

It has been around six years since I took a deep breath and pressed the record button on the video app of my phone. I blundered through an introduction video, deleted it, wrote a script, blundered through that and deleted it. Eventually, I decided on something that was a few minutes long and sent it to my YouTube channel. Of course, nothing happened. It did get a few views! Really... just a few, but that was enough to inspire me to make more and seek out others who live with Type 1 Diabetes. I'm so very glad that I did.

The last six years have been eye opening, jaw dropping, heart wrenching, gut churning, annoying and, most importantly, absolutely wonderful. The good, the bad and the ugly have all visited my social media accounts. The vast majority of the visits have been good and that's why I'm writing this new blog post. The good has had such a profound effect upon my diabetes, my outlook, my social life and my confidence. The good comes in the form of community.

I think it's only fair that I start with GBDoc. You probably knew that was coming! But, what a remarkable community of people and such longevity! GBDoc has been around for far longer than I have in diabetes social media, over a decade apparently. It has had many guises, many volunteers, a few leaders, thousands of members, several platforms, a website, controversy, love, hate and friendship. Sometimes, it feels like Eastenders with boluses - only the acting is better and the story lines are more interesting. Drama aside, the support and information from GBDoc has been incredible. I wonder where I might be in my T1D journey without this community? Where might you be? I suspect much worse off, maybe less knowledgeable, struggling for tech access, more isolated...

...GBDoc isn't the only diabetes community. Different countries have their own communities and that makes perfect sense as healthcare, access to meds and tech, societal differences, etc can differ hugely between nations. Some communities try to cover a global "scene" and that's cool too. From other people, other countries, other values, other uses of language, we can learn a great deal alongside (for me at least) helping to recognise privilege.

Communities are very fluid places. As time passes, people come and go perhaps because they have gained the help and information they need, perhaps they didn't get what they expected, maybe they died! Many reasons can cause the disappearance of an individual from an online community just as many reasons can bring about new faces. 

In my six years of community engagement I have gained so many friends - I really couldn't list them all without forgetting a few. Some have been friends for almost the entire six years and I hope they remain so for the rest of our days. Some have drifted away, a few decided to not be friends at all after a while. That seems like very normal human behaviour and I'm quite accepting of it. Community makes friendship easier to develop and blossom. If you're feeling isolated and lonely with your diabetes then the community could be the answer.

 Away from being bestie mates with lots of new people, your diabetes could benefit hugely from community engagement. Hybrid Closed Loop (not an artificial pancreas) looks likely to be a hot topic for the years ahead in the UK. Yet, most diabetics are not using that technology right now. That means a lot of learning and understanding is on the horizon for people who may want to try HCL (criteria dependant, naturally). The same was true of Libre, CGMs, Smart Pens and Insulin Pumps - less complex than HCL, perhaps, but the usage experiences of peers have proved invaluable to many.

So, you've got new friends and new tech. Now what? Maybe you struggle with the mental burden of having diabetes? Maybe you've heard of talking therapy? That's exactly what a community can offer. Put your grown up pants on and start talking, tweeting, posting, whatever! You'll be surprised at who understands your issues and reaches out to offer an ear. And it helps! To not feel alone in your struggles can ease your burden even if no immediate solution is found. What is the old saying about a problem shared is a problem halved?

Do you need more? Well, community doesn't always mean serious. I've had some hugely fun days out with my friends from GBDoc, we play quizzes, fantasy football and cruel but funny practical jokes on each other! Other skills are shared via a Stitch Club. Books are read at the same time, films and TV shows via watch-a-longs, hobbies and interests shared and enhanced because of new diabetic friends who just enjoy the same things. Maybe you enjoy gaming? gotcha! Art? gotcha! The list of interests is huge and you'll likely find someone who enjoys the things that you do with no relevance to diabetes apart from being in the wonky pancreas gang.

By the way, serious can also be lovely. Some friendships have developed into more and dating, even marriage, has happened. 

If life dealt you a bad hand with diabetes, you can still win the pot if you play your cards right. I'm turning into Bruce Forsyth. Good blog, good blog. 

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HbA1c and Time In Range

As I wrote the title to this blog, I immediately worried about how boring it might be. When you are diagnosed with diabetes, pretty much any type, then numbers and data (hence the image above) quickly become a part of your life. Firstly, I promise that this post will not be examining any numbers in great detail - that would be horrendously dull and you're probably not here to find out what my HbA1c and TIR currently are. If you are, then I'll tweet those numbers especially if they're good ones! 

Shall we start wth HbA1c? You might get yours in a plain number format or a percentage and it gives a reasonable indication of how well things have been going over the last 90 days. Or does it? An average, kind of, number based upon your blood glucose? Hmm. Perhaps if your BG is generally very stable and it's floating around in the happy zone for the majority of the time then your A1c might reflect that you're doing well. What happens if you're having several hypos per day, over treating them, and correcting several hypers per day? Lots of numbers such as 2, 3, 18 and 19 might be on your CGM/Flash/BG Meter and your time in the happy zone might be very infrequent yet your HbA1c might show that you're doing quite well with it's average BG offering. Clearly, you're not and that's why HbA1c alone can't be trusted to give an accurate picture of your diabetes management.

Time in Range seems like a better way of monitoring how well things are going. The picture is more detailed with this data. We can identify problem periods of time and change what we've been doing to reduce those instances. Time in Range data may just be one of the most simple yet brilliantly effective innovations in diabetes care in the last decade. I wonder how many of you have left a diabetes review with your HCP with the news of elevated HbA1c ringing in your ears? "It's too high, you need to get that under 8%... around 7%.... 6.5%?" and you nod and agree and off you trot, back to work or home, with absolutely no idea why your A1c is elevated. Perhaps it was that sandwich? or maybe your entire diet?! Oh no! "Keto, that'll solve it". Well, maybe. 

Time in Range should help to stop the overreacting to HbA1c results. If it's a bit high, all that data can be looked through and if you leave notes on your CGM/Flash device app then it's even easier to identify what might have caused the hyper on that day.  

Can TIR be problematic? 

I'll wager that you've seen a few 100% TIR screenshots on your socials. Maybe you've reached the unicorn zone, too? It's a nice feeling even if it's not really that much better than a 90% or 80% TIR. Of course, 100% doesn't always tell the full story. If your TIR was at 100% over 90 days but your BG was between 8 mmol/l and 10 mmol/l in that period then your A1c would reflect a more sketchier management compared to the incredible management indicated by the 100% alone.

100% over 90 days is likely impossible for most but a high TIR might also indicate inaccurate CGM/Flash readings. I don't know of a single device which hasn't had accuracy questioned or complained about on social media. That includes me, I've made noises about inaccuracies dating back to 2017 and the issue is still a big one, six years later. Artificially inflated TIR might be noticed by a higher than expected HbA1c - just as the fictional blood glucose diaries of old proved, the wrong numbers from BG checks can be picked up when your A1c comes back at 11%  

Also, numbers and targets and TIR can get a little overwhelming for some. Some feel an incredible sense of failure because their Time in Range is 69% and they've read that it needs to be 70% or better. That's such a shame because 69% TIR is probably pretty good! and 1% off your "goal" is such a small amount. 5% is a small amount, so is 10, yet not reaching that target number can deeply affect some.

Also! You're not a number. Your life is wonderfully unique to you and your diabetes will likely reflect just how much time and energy you have to manage it. In the late 1990s, during one of my infrequent diabetes reviews, a consultant decided that it would be motivating for me to know of the previous patient's HbA1c. The guy walked by me on his way out of the building. During my consultation, I found out what his first name is and his last HbA1c result. "X is doing brilliantly, his A1c is..." Can you imagine being offered that information at your next review? There would be uproar on socials and I'd be leading the roaring. In the 90s, I was less concerned but I responded sarcastically (Me! Sarcastic? No!). It left me feeling totally uncared about by that diabetes team. My hurt aside, the guy with the great A1c was also being viewed as a number! What a crap time to be a diabetic. Things are much better now. At least they should be for us all, as diabetes care has evolved hugely.

Back to the subject! It seems to me that HbA1c and TIR can be useful when viewed together. Alone they can be problematic and as much as HCPs and your peers might focus on those numbers, please remember that they are just numbers and not your wonderful unique diabetic self.

Sorry if this post was a bit "numbery" and boring. 

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Oversharing in Diabetes

I remember writing about sharing information, data, stories in diabetes before, probably a year or two ago, and my thoughts on the subject haven't really changed much as we head towards 2023 but a few things have happened which have sparked conversation in the last year.

On the Twitter, I tweeted this about Sharing T1D yesterday. I'm fine with others liking or not liking to share their diabetes information. Health, including diabetes, is a very personal subject and often subjected to stigmatising remarks, bullying and sometimes just generally unhelpful (and often unsolicited) advice. Little wonder that some prefer to not share anything in regards to their own diabetes with the prospect of such negativity. I really understand that, I hid my T1D for a long time because I didn't want to hear the advice or the patronising encouragement or have to explain what it was, what type, do I have to inject... yadda, yadda. It was just so much easier to hide it for the majority of the time and social media is such an easy place to hide. It's easy to have lurker accounts on pretty much every platform, easy to sit back and read rather than joining in the conversations. Hiding and not sharing is a very safe place to be.

There is a safety aspect to consider when sharing, too. Who knows who lurks behind the keyboards of others and what their intentions might be? Only last summer, I was made aware of a prolonged period of stalking and accusational tweets aimed towards me from an Australian advocate account which I'd blocked some 18 months beforehand. Disturbing stuff which took me away from Twitter for a few days to consider my options. Thankfully, that episode came to an end once I'd brought it to public attention but it was shocking and upsetting. It's very easy to upset somebody on social media without trying and those we upset well, they might not have enough sandwiches for a picnic. How do we share but stay safe? There is no simple answer apart from avoid offering personal details to people who you don't know. Sometimes, even that might not be enough if a determined person wants to track you down, find your employer, etc.

So, is it worth it? Yes! I think that offering your story, your experiences, your info can be really helpful to your peers. I imagine that you've read something in regards to diabetes which you've found useful in how you manage your own diabetes. Maybe those words came from somebody living with the same type of diabetes, a person who was willing to share their experiences and information. That's why you should consider sharing your experiences and information! It is the cheapest and easiest way to "pay it forward". Of course, don't make it easy for the sandwich deprived to locate you in person, avoid publicising your phone number and sort code and if an unpleasant encounter does occur then my best advice is to ignore it. You might choose to use the mute function on your chosen platform rather than the block button to minimise the oxygen given to the angry fires. To not give oxygen to the fire has been a long term piece of advice of mine but I'm still guilty of doing the opposite from time to time. I'm only human and the urge to vent can be overwhelming in the face of serious sandwich deprivation. I'll try harder in 2023.

What about the feelings of others when you share? Perhaps you've had a great HbA1c, your best ever, and you hit your socials to spread the news and celebrate your good day. I suspect you'll mostly be met with encouragement and good cheer from your friends and peers. However, you may also be met with words which dissuade you from sharing such info because others might be having a tough time with their A1c or general diabetes management. I have a lot of sympathy for anybody who is struggling with their diabetes, I try to make myself available to anybody who needs to talk through groups, mentoring or just a simple message exchange but the struggles of others should never stop you talking about your own diabetes if you've had a good day or a good result. This condition is relentless and despite the tech advances it will continue to be so for the foreseeable. Little victories need to be celebrated, I find them to be morale boosting, I feel more in control of my diabetes and, when others share their wins, I feel encouraged by them and pleased for my peers.

To not share results or information through fear of upsetting others is a backwards step in peer support. If we were to stop sharing our lived experiences, what worked, what didn't, what hurts, what itches, a great A1c, a dodgy TIR, etc then how do we learn about advances in tech and medicine and care and solutions? Our diabetes team? Yeah - I'm not sure that the closed looping crowd would agree. I wouldn't agree, either. Without reading the experiences of my peers, I wouldn't have discovered Flash, CGM and insulin pump therapy as soon as I did - three things that massively improved my diabetes burden and numbers.

If you do feel negatively about the shared information or experiences of others then I think it might be worthwhile to seek support from different areas, especially if such sharing is becoming overwhelming to you and making your own diabetes burden even worse. 

I am pro-sharing when it comes to diabetes. It is the foundation of peer support, in my opinion and there are very few dangers from tweeting your last A1c result. Oversharing is where the dangers lie, keep your private info protected and remember that fire and oxygen thing.

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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From The Cradle To The Grave

Have you been reading the shared experiences, maybe offering your own, for Hypo Awareness Week? I have offered up a few things and joined in with a few discussions. It's been heart warming to find solidarity with my peers and learn of the experiences of others. Awareness days, weeks, months or whatever are good things, in my opinion. A little understanding can go a long way for better care in a clinical environment but also at home, work and in a social arena. Keep on sharing and raising awareness of what matters to you.

So, this blog post isn't really about Hypo Awareness Week. The title and photo might have given that away already. It was inspired by the hypo conversations, though. Hypos, a seemingly unavoidable complication of having T1D, rarely spoken of as a "complication", it's frequency - more so for some than others, and the knowledge that your last hypo probably won't be your last ever hypo unless it puts you in the ground. Hypos are probably for life, once you've been diagnosed with T1D, unless technology advances further or £50 million donations find us a cure.

Lots of things are for life, of course; Taxes, corrupt politicians and ITV reality shows to name a few. You'll have your own "for life" baggage, I expect. I certainly do and despite my positive stance over awareness campaigns, I have found this particular one has left me rather melancholy over my own "lifers". 'From the cradle to the grave' refers to my own long term conditions. I almost called this blog "Not a moment" because since my first breath, I have lived with a long term condition. 

Some conditions affect our lives more deeply than others, that could be because of the condition itself or the way we lead our lives or how we're managing the terrible hand that the universe dealt us. My LTCs vary from things that I have no need for support or care over to things such as T1D, where I benefit hugely from good support and care.

My melancholy, my self-pity if you will, will come and go for the rest of my days. It is an infrequent visitor and not something to be concerned about. I feel the storm clouds gathering when I've had a rough period of health or a difficult period in my personal life. In this case, I've had a troublesome couple of weeks with hypos and reduced rest and that's why I've been all very "woe is me" for a day or two. In this time I've been revisiting my "lifers", when they happened, are they related and even considering what might happen in the years to come. Following my last hypo, frustrated, I silently went through my LTC health history:

- Day 1, congenital birth condition

- Year 2, speech condition

- Year 8, diabetes

Then, some breathing space for 25 years. The universe must've been on holiday. Let's crack on...

- Year 33, eye conditions

- Year 37, new eye conditions

- Year 44, shoulder condition

A lot of conditions, hey? and far too much detail to offer in one blog post. Some are related to each other but, because I focus on T1D and anything related to it, I rarely bother to mention anything that's not in the diabetes camp. Oh, sure, they impact on me in many different ways but they don't require any intensive management like T1D does. Oddly, despite the hypos putting me under this dark cloud, T1D is something I feel more "ready for the fight" over. It might be because things could escalate and become very bad with diabetes and the complications that it could bring or it might be the prospect of one day having very little to manage (maybe nothing) in later life when it comes to diabetes. It would be sweet to still be around to experience that.

Reading back through this post, it looks pretty bleak. Sorry, I'm usually a very positive and glass half full person. Life can be incredibly good sometimes! I don't need to think for too long to remember and to count my many blessings. Life is also very short and I firmly believe in enjoying myself as much as I can until I head off into the sunset, leaving behind a trail of horrified nurses. I encourage you to do the same (maybe not the nurses) when you can because, diabetes or not, it turns out you only get to do it once.

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Too Much Or Not Enough

I'm a very vocal advocate of individuality in diabetes. I've certainly used the "YDMV" (Your Diabetes May Vary) acronym many times during discussion and when expressing a view. Type 1 Diabetes is often viewed as simply injecting or pumping insulin to manage consumed carbohydrates and I'm fine with that. I think if you don't have T1D, live with a diabetic or work in the world of diabetes then why would you know much more? It's not wrong, of course, but it doesn't really cover more than the very basics.

Inside of our world (assuming you live with T1D, live with a diabetic, work in diabetes, etc) you probably realise that it's so much more than carbs and Banting Juice. All the decisions that we make are well documented and there are likely lots more that differ from person to person. You might have your own unique decisions to make in regards to your diabetes because you're an individual, living your own life and managing your own diabetes. Diabetes mirrors life in various ways and certainly, for me, the differences between person to person is one of those ways.

I think I've stated the obvious and I'll get to my point and what the title of this blog means!

I've recently mentored a few of my peers in regards to their T1D, you may have read about some of that on the Twitter. The vast differences between those people and the hundreds of other peers who I've engaged with is apparent but one thing which crops up frequently is some of the advice given by HCPs - advice which I'm struggling to understand and it looks a little something like this:

"You're scanning your Libre too much"

 "You're not finger pricking enough"

"You don't need to check your CGM that often"

Those three pieces of advice might be right, of course. My own experience is based upon the "too much scanning" advice. It was likely well meaning! I had complained about injection burnout which may have been confused with general burnout. A high number of sensor scans may have raised a red flag and well meaning advice followed. It was the wrong advice because, for me, I wasn't scanning too much. Why? I live my life in my way as an individual. Scanning a sensor, when your phone is often in your hand due to work and other commitments, was not tasking me or burning me out. Perhaps if I was working 10 hours a day as a taxi driver or heart surgeon then the same number of scans would be difficult or even impossible and noteworthy as a cause of burnout. 

"You're scanning too much" doesn't take into account me as a person with my own life. It compares me to others and even the HCP's life experience and what they believe to be the right amount. I stated why I scan as often as I do and why it's not a problem and we moved on. I don't fear speaking up during a consultation but I do know that others have issues in that setting and they feel anxious about doing anything unless they're nodding in agreement with an HCP.

"You seem to be scanning your Libre a lot. Is that causing you any problems?" might be a better way to address that red flag. But who am I to talk about communication!? *wink*

The same could be said for the other two pieces of advice, above. To notice something a little unusual is right and great care and it should be questioned but never judged or followed with a sweeping statement. "Too much" might be just right, "not enough" might be just right. Great care considers individuality and works with that. Ask questions, talk to your patient, get more information.

The above three pieces of advice might seem innocuous and to some that might be right, to others it might pile pressure on to an already over-spilling plate of decisions and burden and stress. That's why I'm very vocal about HCPs treating us as individuals in every respect and why it makes great sense to treat each other in the same way.  

 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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Carb Counting Assessment Appointment

As experts in the field of maths, seasoned Diabetics are expected to be pretty competent at carb counting. Carbohydrates are one of the dominant forces in the world of Type 1 Diabetes and you may have been given a crash course in carb counting at some point, following your own diagnosis. Some of you may have been on educational courses such as DAFNE and picked up your first in "Normal Eating" - whatever that is! All super, fine and dandy but what is a Carb Counting Assessment appointment?

As a part of my previous (and excellent) appointment, I agreed to attend a Carb Counting Assessment despite being a little confused at what to expect. I imagined a table, full of foods all of which would be challenging to carb count. Maybe a pot of rice? some pasta... random items from a Chinese restaurant?! all my favourites! This wet daydream was far from the truth and there were no foods on offer / to guess the carb content of. Instead, I spent a good 20 minutes talking about how I'm coping with dosing for foods and drinks, what my day to day meals might look like, snacky snacks, MDI vs pumping, Fiasp, exercise and tonnes of good stuff.

This was hugely unexpected. I thought I'd be tested, quizzed, marked on my competence. I even Googled the carb contents of various rices because I felt certain I'd be shown a portion and asked to estimate the carbs. No such challenges happened, I never felt assessed.

There was an immediate understanding that my HbA1c, time in range and longevity with T1D probably means that I'm getting along okay. Once we'd got through the main course of the appointment, I was given time to ask my own questions. Amazing! What has happened to Dietitian appointments in the last 30 years?

30 years?

Ah, yes. Possibly longer! but 30 years is in the ballpark. Rewind those 3 decades to a time when I was a teenager, angry at the world and especially angry at having this stupid condition. Diet? Pft! Yes, I know, eat more fruit and vegetables, good chat. My last appointment did contain that iconic piece of advice alongside many other fear provoking gems. I've spoken about scaremongering and how it's ineffective and a pretty mean tactic to use on children to get them to tow the line, actually! it's a mean tactic to use on a person of any age - don't do it. The dietitian appointments of old are one of the reasons that I hated attending clinic and a driving force in me not attending appointments for many years. 

I've been offered appointments in recent years and declined, a carry over from the horrible appointments of the past perhaps. However! The new (around 5 years old, now) fully engaged with his T1D, version of me submitted to attending this one as a way of showing goodwill to my new consultant, the consultant who is recommending me for pump funding, it seemed only reasonable to meet half way and allow for a check in that particular box. And what would I have to lose? A few hours of my time at the most. I'm glad that I attended and I will certainly be checking in with the clinic Dietitian again in the future.

Should you?

I think if you can iron out any wrinkles in your chosen diet and lifestyle for a smoother time with T1D then you should. Ultimately, a Dietitian is there to help us and not judge and chastise. If the opportunity arises then I encourage you to at least give that appointment some of your time and go into it with an open mind. If it's awful then avoid for a while and shout at me about it on Twitter.

So, there's that for today's blog post. 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 different 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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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

Covid-19 Vaccination - Dose 2 Side Effects

As the sticker in the photo says, I've had my Covid vaccination. You probably know that because you likely follow me on one of my social media channels and everybody must mention their vaccination and/or post a photo of their badge/sticker/arm - It's the law.

Before I start, if you haven't read my original blog post which followed my first vaccination then you can do that by clicking or tapping here

Side effects! That's why you're here. You want the gory details and possibly some reassurance before your own jab? Can do! We're talking AstraZeneca here, by the way.

I'm 72 hours post-jab and I'm beginning to feel more like my usual self. Certainly well enough to smash my fingers into a keyboard, unlike yesterday. To begin with, and for a while, nothing happened after the jab. I was expecting the violent reaction at around 12hrs, the same as Jab No.1 but that didn't happen. This time the side effects crept up on me.

The first changes of note began after 6 hours. I felt hot and clammy, similar to a hypo symptom. I'd already taken a pre-emptive dose of Paracetamol and that may have reduced the severity of any fever before it had the chance to begin. That feeling continued and escalated slowly for the rest of the evening until, when it was time for bed, my face and neck were feeling hot to touch and, strangely, my nose was hot! I was also beginning to sniff a lot. 

I did sleep reasonably well which was a surprise. I was delighted to not be woken at 2am by violent shivering and not feeling frozen to the core. There was more a sense of general uncomfortableness. A little like when you know a cold is just about to begin. I was also delighted to not feel like every bone in my body was hurting. The aches began after around 24 hours, especially in the back, shoulders and legs. The aches continued for a full day, despite a combination of Paracetamol and Ibuprofen. Normal side effects, according to the advice I've read and was given by the friendly jab-giving HCP. 

The worst period of side effects, for me was between 24 and 48 hours. Add all the above in with fatigue, a sore throat and running nose. Yuk! That said, it's just cold - mild flu-like symptoms but I think because I was confident in the knowledge that it'll be short lived, rather than a real cold or flu which might last for weeks, it wasn't overly distressing. In fact, it wasn't distressing at all to just rest. I'm great at sitting around and doing nothing. It's my favourite.

What about the Diabetes!?

I noticed that my usual carb:insulin ratio was no longer a thing. Previously, I was a 1u for every 10g guy. Easy! So, it was a surprise to need 18u for a 60g meal. Even that didn't succeed in bringing my blood glucose into range. Prior to the jab, my time in range was around 70% on average. I'd actually had several good weeks of over 80%. Here are the last 4 days:

Saturday: 48% (Jab day)

Sunday: 37%

Monday: 58% (after aggressively increasing my boluses)

Tuesday: 60% (Today)

Not wonderful and I'm still struggling to keep things in single figures. I'm sure that will settle down and I'm not very concerned. 

What I am is incredibly grateful.

Let's start with Covid-19. To date, I've dodged it and so have all my friends and family - The majority of whom are now partly vaccinated, fully vaccinated or at low risk. If the struggles of the side effects are anything to go by then I imagine the infection would be horrendous. The imagery and tales in the media and from others on social media confirm what an awful illness it is. 

People in other countries continue to die in huge numbers because of the virus. In England we had our first day of zero deaths for a long time, yesterday.

Although it's too soon to consider the world or even the UK to be safe, I feel like this pandemic has given me a different, better perspective on life. That happened to me in 2012, following almost two years of living with severe visual impairment. Two years of wondering if I'd seen my last of everything and everyone that I love. Then the world appeared again and wow! When that happens, you really appreciate the things that you were once complacent about. I'm in a similar place, today. The things and people I love are magnified. I no longer have time for the things I don't enjoy and I have no time for individuals who are... vexatious to the spirit! Desiderata still gives great advice.

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

 

Diabetes+

If you're a frequent user of social media platforms, and your use of such platforms is based around Diabetes, then you're probably well versed in the terminology and acronyms which surround our condition.

It can be a confusing place for the newbie. There are docs everywhere but they're not medically qualified. T1D, T2D, LADA, MDI, BG, TBR, TIR, HbA1c... Diaversery, Diabuddy, Diabestie... My own accounts are littered with a bewildering array of references to Banting Juice and feeling Hypo Twatted and all under the influence of caffeine.

I love it all. If you can't work out these little sayings and acronyms then it's perfectly fine to ask. Put a hashtag at the front of those words and you might get a bigger audience. Twitter, my favourite platform, has a character limit so it makes sense to use such acronyms when tweeting. So far, I've resisted the urge to use BJ when discussing Banting Juice (insulin). There are puerile minds on the Internet. Not mine, obvs!

That brings me along to Diabetes+ It's not a term that I've used before but it's one that springs to my mind when I notice others discussing a positive (+) aspect of life in relation to their Diabetes. How can there be a positive to Diabetes!? You exclaim, finger hovering over the 'Unfollow Diabetic Dad' button. Positives aren't to be found within having the condition, at least not that I've found, but within the new experiences and relationships that the condition allows.

You don't need to look far for a new positive from Diabetes. It could be that your management of the condition is improved because of simply reading the social media messages of others, absorbing information and keeping up to date with the latest happenings on Planet D. That alone is a superb thing. If that's your Diabetes+ then I'm really pleased for you. My personal Diabetes+ goes much, much further.

Reading and engaging with peers has been a huge positive for me, too. Beyond that I've discovered, to my surprise, that I quite like people and meeting them, getting to know them and in some cases becoming good friends with them. It's always good to have something in common, right? misery loves company or something. I'm kidding! I've never had a miserable experience when meeting a fellow diabetic or a person who works within Diabetes, business or healthcare. I've never experienced this before. At various points in my life, I've met with many people on a social level; Work colleagues, friends dating back to school days, football friends, poker player friends, the list is long and within each "category" there were a good number of people who left me feeling negative about my encounters with them. Personalities and opinions do clash, of course but it appears to happen to a much lesser extent within the peer support and friendship circles of Diabetes. I wonder if that's because we have an understanding of the struggle which we might not with the organic insulin growers of the world?

Prior to fully engaging with my Diabetes, I was somewhat of a recluse. I certainly had and still have, to a lesser degree now, social anxiety. That lesser degree has reduced massively and continues to do so following each "meet up" or conference. It's like being fed a little more confidence each time.

I know, I talk about Diabetes a lot. I do that YouTube thing, I'm all up in your grill about Diabetes whenever you try to get a minutes peace on Twitter, I've written things (you're reading one now) I've been on the radio and I've many irons in many fires. That doesn't mean that social anxiety, in the flesh, isn't a very real thing. 

Prior to the Covid-19 pandemic, my confidence levels were very high when it came to meeting others. Now we've been locked away for more than a year, I would be a liar to suggest that I feel just as I did at the beginning of 2020. There has been a step back but I'm determined to rediscover that Diabetes+ again by meeting more people who have Diabetes, when it becomes safe to do so. And we're nearly there! I'm not far away from my second dose of the Covid vaccine and a few weeks after that? I'll be as protected as I can be from that bastard of a disease.

Baby steps, though. The plan is to meet a couple of other friends in a park, distance, drink coffee (tea if you prefer, Carolyn) and chat. As the UK opens up, I hope more occasions like that will happen and my Diabetes+ continues to grow for many years to come.

I hope this blog has been a tale of positivity. Do you have a Diabetes+ ? Go ahead and tell me about it in the comments box below or just send me a tweet.

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

Stop Diabetes Stigma! But How?

"Stigma" is frequently heard in reference to Diabetes, especially in social media circles. Sometimes, an image is tweeted in all it's horrifyingly inaccurate and stigmatising glory. It doesn't take very long for the community, be it DOC, GBDoc or otherwise to pick up on such tweets before a torrent of strongly worded replies are sent. Often, the stigmatising tweets are recycled or edited slightly to suit the agenda of the tweeter. In my four years in Diabetes Twitter, I've seen that happen several times. The 'Ice cream cone for a leg' image has certainly been knocking around for a while and often resurfaces amid a fresh round of anger and vilification.

In four years a lot can happen. On the Internet and in the world of social media, MUCH can happen. Technology changes, attitudes change, we grow, we improve - don't we? I'm beginning to think that we haven't when it comes to stigma.

I remember the ice cream cone, and other such images and tweets, from the early days of my Twitter account. The outpouring of disgust and anger then was heartening as it was towards subsequent tweets of the same ilk. Now, in 2021 I'm beginning to think that we as a community of people living with diabetes, are wasting our time. Social Media is often described as "shouting into the void" and it feels very much like that when it comes to calling out stigma because, quite simply, nothing is changing in that regard.

Perhaps you're a keen advocate for people living with diabetes and you think that you're doing everything you can to stop the stigma surrounding the condition by expressing your anger, correcting the offending tweet and retweeting the message. Perhaps your friends notice your retweet and hop aboard the latest round of disgust and corrections and vents. And that feels great, you've had your say, somebody was wrong on the Internet and you told them! Back to posting black and white pictures of yourself or discussing last night's Line Of Duty. I've done that. I'll probably do it again.

You're probably understanding what I'm getting at here. The expressions of anger and correcting such stigmatising tweets are all fine and dandy but they are not changing anything. Other such "campaigning" continues but still the world is faced with the same issues; skin colour, sex, sexuality, disability, age, status, and on it goes. 

(Bizarrely we see those who are very vocal about discrimination, offer their disgust at stigma and the discrimination which they face, on one hand while talking disparagingly about skin colour, sex and age on the other. Something has been lost in the fight for equality, somewhere.)

If we, as individuals cannot stop the stigma surrounding diabetes then who can? Perhaps the charities and organisations that represent and support us!? A great idea. I thought I'd do a little searching around and I couldn't really find a great deal from the major diabetes charities in the UK in regards to the stigma faced by diabetics and the work they're doing to reduce it. I must be missing something.

I ran a poll on Twitter; Here it is 

I know, a small sample size but enough people took the time to vote and give their view here to make the results very concerning. Over a third of those voting think that charities are not doing a thing to help reduce the stigma we face. 2% think they're doing everything they can. 

Could it be that the charities are not aware of this issue? Perhaps. Perhaps they'll be tagged into a tweet for this blog and, indeed, more of the stigmatising tweets that we face in future. Then maybe we'll see some real work and real results when it comes to reducing diabetes stigma. 

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

Diabetes Decisions

The Thinker

Life is an endless list of decisions. It can be as mundane as what socks we're going to wear today or something as serious as a relationship or job choice. Whoever you are, decisions are an inevitable part of life.

Diabetes isn't a decision, largely. I know Type 2 Diabetes can be avoided or delayed in SOME people but for individuals like me, with Type 1 Diabetes, it's not a choice. What comes after a diagnosis of T1D is a new life of decision making. Your old life decisions will still exist, of course but now you've got to find some extra thought capacity for the decisions that diabetes brings.

"180!" is the joyous cry at a game of darts, when a player scores the maximum. It's also estimated to be the number of extra decisions a person with T1D makes in a single day. Let's do some easy maths:

- You're a light sleeper and you manage 6 hours of sleep per night

- For 18 hours you're awake.

- You're making, on average, 10 diabetes related decision per hour.

- A decision every 6 minutes.

- 1,260 decisions per week.

- 65,520 decisions per year.

I'm in year 36 of T1D. Go ahead and pop those numbers into your calculator. Little wonder that I've started to lose a tiny amount of head hair.

Even as I wrote those numbers, I had to double check that it's right. It seems that it is. Of course, your diabetes may vary. I know that if you're sleeping for longer and using closed loop for your insulin delivery and BG management then your decision making is likely to be much less of burden on you. You're still making decision but probably a lesser amount. If you're struggling with diabetes burnout then your decision making may be vastly reduced or even nil.

It's not just the numbers, though. It's the magnitude of the decisions made. Each day, I average 8 injections of a substance that could easily result in my death. A mis-calculation is very common. That means a corrective injection or eating/drinking something carby to stop my blood glucose from falling too low. The latter being of my immediate concern but the former can also result in life altering complications and/or a shortening of my life. Those decisions to a non-diabetic or a person recently diagnosed must seem enormous and incredibly stressful.

They are.

Of course, the majority of T1D management is simply a persistent monotony. I once described it as 99% boredom, 1% sheer terror. That's because the decisions I make are mostly around what I need to inject to cover the activities and carbohydrates in my day to day life, needle changes (and lancets!), sensor changes, ordering prescriptions, attending appointments, giving up bodily fluids into little containers and handing them strangers... you get the idea. It's not exciting, thankfully! I'm pretty pleased with the boring. The last thing I want is an exciting chronic illness which might kill me.

Boring doesn't mean easy. I do the boring to avoid the terrifying or, at least, minimise the terror. I'm still here so I guess things are going alright, right now. 

There is hope! and it's about time that I put more positivity into my blog. Technology reduces the decisions and the burden of T1D. I say that with the strongest conviction. I don't "loop" and I don't "pump" but simply using a CGM has helped to lighten my load dramatically in the last few years. It seems that pumping and looping (?) is a natural progression for me and I have no doubt that those progressions will lighten my load further. Of course, I hope for a cure but I'm realistic. I'm 44 years old and that probably won't happen in my lifetime but I do think that technology will continue to advance and make the T1D decisions for me. Perhaps 180 will only be associated with the darts, one day in the future.

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

 

Use The Force

 

Do you ever look at a meal, a plate of food, a snack and just know what the carb count is? Maybe you've gone a step further? Not only do you know the carb count but you know exactly what to bolus and when to bolus to get your blood glucose back into range, soon after you've eaten.

Do you sit there, feeling all smug like some kind of diabetic Yoda? Good! You probably should. Diabetes is work and getting things right is something to celebrate.

I think we "use the force" in many aspects of life, particularly health. I'm willing to bet that some of you have guessed what dose of pain relief you needed for a headache. One paracetamol... two... maybe two with a couple of Ibuprofen, a few hours later. Wow! it worked. The headache is gone. Headache Jedi, we are. (sorry)

I'm not sure Obi Wan & co. can take the credit for our health treatment successes. I think this is because we know our bodies and how they react. Sometimes we make conscious decisions about our health and sometimes things just seem to go into autopilot. Sadly, as we age and get more experience of ill health I think we retain a subconscious knowledge which we call upon when treating common ailments or, indeed a chronic condition such as diabetes which we've become conditioned to living with.

You might refer to the bolus doses and carb counts as guesses but, after a while with diabetes, I'm not sure that's entirely true. All those meals and injections (or pumps), the maths, getting it right or wrong and the information presented to us or felt by us physically - does it just vanish or is some of it stored inside our heads beyond memories of the events? Easy, Diabetic Dad, this is getting deep.

Take hypos. (Please take them!?). We're told what to consume when we're below a certain level of blood glucose. If you're dropping 0.1mmol every 5 minutes and you've just crept into the red zone then sure, you might stick to the rules and eat the recommended amount of carbs because you know you're not in any real danger. If you're dropping 0.5mmol every 1 minute, you're shaking, rapidly heading south and your back looks like a waterfall then you're unlikely to be sticking to the rules because you're not thinking clearly, you might be panicking and hypo hunger is a real thing sometimes! Yet, you probably realise that you're in greater danger at that stage. You probably realise that counting out 6 Jelly Babies isn't very important. You probably realise the only number that needs to be given any attention is the one on your BG meter or CGM. Let the feasting commence! That may have happened to you previously. It's certainly happened to me; a time where little thought or brain power is used, it's all action and a carb frenzy. Then you feel better. Later you're a little high but you're not in danger so your brain drops out of survival mode and you calculate your insulin correction dose. Of course, some of you might be lucky enough to have the technology which informs you of you insulin on board, the speed of the decline of your blood glucose and how many fast acting carbs you'll need to consume. But... perhaps you have that tech and you still go overboard because of survival autopilot.

I know I've used the words "You" and "Your" and "You're" several times, there. That is just a generalisation of what some people living with diabetes might have done, including me. I do dislike talking about the diabetes of others in a way which must reflect my lived experience. That would just be terribly wrong of me.

Moving on! and to conclude, I think we as people with diabetes, regardless of type, are under tremendous stress and we carry a huge burden by simply living with our condition. The number of additional decisions made per day, compared to a person without diabetes, is huge. Those decisions require brain power which can sometimes be utterly exhausting. I think it's entirely normal to sometimes trust in your instincts, subconsciously act and "use the force" to act or react in regards to your diabetes management.

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

Diabetic Superstar

 There are two words in the title of this blog. I'm fine with one, less fine with the other.

"Oh, no! He's going to talk about language matters!"

Maaaaaaybe. Let's see.

Of course, I'm fine with "Diabetic" and always have been. It's a part of my social media username and it's written in the tattoo on my arm. You might say that I'm relaxed about being referred to as a Diabetic. I know some are not and that's equally fine with me. 

My grumble comes over the word "Superstar". It's not only Superstar, it might be "Up and coming rising star" or perhaps "Shining star". Stars get a lot of copy when it comes to exaggerated expressions of praise, don't you think? And praise is good! Praise is right. Praise works. Individuals who do great things undoubtedly deserve praise.

Where the line is between expressing thanks & offering praise and creating a celebrity is what worries me. Celebrity offers many trappings which are hard to resist. I won't use my blog to name-drop but, in a previous life, I've known a few good people, friendly people to become wealthy and famous and subsequently become a very different person. That's a shame but I understand how the voice of an ego can change a person.

So, you're wondering how that might be related to diabetes and who I'm talking about! Firstly, I'm not interested in cryptic messages, subtweets or carry overs from the schoolyard. That's not my domain. I'm blunt and direct much to my cost, at times. I'm not referring to specific individuals here. I'm referring to what appears to be a growing trend of using such superlatives, particularly when aimed towards advocates in the diabetes community.

I've seen such terms directed towards HCPs on Twitter. They deflect it superbly! Often responding with "I'm just doing my job" or similar yet the majority know that's not true and many HCPs go above and beyond the calling of their salaries. They deserve praise but I suspect/hope they'll agree, they're not celebrities and feel uncomfortable to be slapped with the "star" label.

Advocates seem less worried and that worries me.

I think it's impossible for any advocate to truly represent the best wishes of such a huge number of people, such as those living with diabetes. Even a specific type of diabetes, such as Type 1 has almost half a million people trying to manage the condition in the UK alone. The whole subject of advocacy leaves me uneasy but when any one advocate is held on a pedestal, I feel even more uneasy about inflated egos, self appointed voices of authority, individuals who might speak for others, speaking for an entire community without engaging with any more than a tiny percentage of their peers. 

A shift in diabetes advocacy would be a great thing. I think many have heard me and others suggesting this and are acting upon it. A shift in how we praise advocates might also need to be reconsidered. While language matters in regards to being respectful, I think it also matters in the avoidance of creating a celebrity culture, a culture which cannot be good for communities of people living with diabetes. Within the #DOC and #GBDoc it only recently came to light that advocacy resulted in the abuse and sexual harassment of women, as "fame" and status was used to coerce and manipulate members of those communities.

What do you think? Are we in danger of creating celebrities from the world of diabetes advocacy and do we need to be more careful about how we praise those in that arena?

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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Covid-19 Vaccination - Side Effects, My Experience

My GP is fantastic. He is very engaged with his patients and uses Facebook to provide updates on Covid-19 vaccines. In the last few weeks, my area was ahead of the national average and it became apparent (via my GP's updates) that no further vaccine was expected before Feb 22nd. That has subsequently been updated to Feb 26th. So, my hopes of getting the jab were put aside for a while. I didn't mind, I knew my turn would come.

Fast-forward to last Friday (Feb 19th). News reached me that a clinic within my postcode was accepting patients who are eligible for the jab. As a Type 1 Diabetic, I am a part of Cohort 6 in England. That means I was eligible. I booked the appointment online for the following day! A mix of nerves and excitement hit me. I think more excitement than nerves. I'm used to having vaccines. I've had my flu jab, each year, for a while now. The nerves arose from being in a public place with people. Actual people. Attending an appointment for something which will ultimately allow me to do that very thing without fear.

You've probably read about the experiences of others who have had their vaccines. It seems that organisation is as good as it can be for the majority. No surprises, here. Same. I was told to wait for 5 minutes before my appointment time before joining the queue. It took a little longer than 5 minutes before it was my turn. A mix of people were in the line. My cohorts! and some clearly from cohorts relating to age. Shut it! They're not my cohorts! I'm in the young diabetic group.

The jab was no more painful than a bolus injection. I was handed some paperwork (the one in the pic) and a little card, detailing the type of vaccine I've had and the date. Then freedom! Well, not quite. Back to lockdown.

Then, nothing happened. I don't really know what I was expecting. I was expecting something! Tick-tock! Where is the headache? The feeling rough? Perhaps I've got away with it. 

No. 2am, Sunday morning. Something exploded. I was woken by violent shaking in my chest. That spread quickly throughout my body, followed by the coldest I have ever felt. It was horrible. After a few hours of questioning my decision to have the jab and wondering if this is a normal side effect and spooning a hot water bottle to within an inch of it's rubbery life, I fell asleep. The rest of the night was spent waking and sleeping, tossing and turning, freezing and sweating.

When I tried to get out of bed on Sunday morning, it was then that I noticed everything hurts. Every bone in my body was aching. I spent the day taking paracetamol and ibuprofen and sleeping. The side effects started to subside as the evening approached. Eventually, I went to bed at around midnight. Only at that stage did I feel confident that things were improving.

Now, here we are. Approaching 48 hours after the jab. I'm almost my usual self. A little weak, perhaps but nothing to write a blog about... Oh, right. 

I do not regret having the vaccine, AstraZeneca - if you're interested. Over 120,000 people have died within 28 days of having a positive Covid test, at present in the UK. I know that b*stard virus has touched people I know. I know it's taken their family members and friends. I know people have suffered tremendously on many levels. If my day or two of feeling rough is my experience of Covid-19 then I'll take that gladly. 

Others have had no side effects at all. We're all different. Please don't fear getting your jab. Do the right thing.