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

Your Words, Not Mine

It's been an interesting couple of days in the world of Type 1 Diabetes, from my perspective. Last weekend, I enjoyed the Connect One UK online conference more than I anticipated. Although I was select in the parts of the conference which I viewed, and that may explain why I was left feeling positive towards the event, I felt it was refreshing to hear individuals talking about their diabetes, or their association to it, using words and phrases which are not always heard at diabetes conferences. In particular, it was lovely to hear Type 1 Diabetics referring to themselves as "diabetic" or "a diabetic". It was lovely because it felt genuine, it felt like their words, it felt unworried, unsanitized! but in a great way!

Discussions followed, as they generally do following a conference, "Diabetic" was in use again in some quarters and I'm delighted. I'm delighted that individuals who manage the condition are talking, engaging and using their words to describe their diabetes and related experiences.

Language Matters has been a well used phrase and hashtag for several years, now. I agree with it. I fully agree that language matters, as attitude matters, as being respectful matters and as every aspect of being a decent human being matters. Sometimes, we'll likely all fail on those "matters" for whatever reason. We're only human and we all make mistakes with the words we use and the attitude we display towards others and that includes HCPs.

So, fast forward a couple of days and I've been discussing an interview with another person who lives with T1D. He's certainly well known to the general public but we're new to each other. Before we discussed the potential interview, he asked for some examples of my involvement with the world of diabetes. Fair enough. I don't keep a list of "things" that I've done which involve diabetes. I remember things! or, at least I thought I did. It turns out that I've stuck my oar into more than I realise. After a search around, I sent some links and more information. I'll wait to see if the interview happens, fingers crossed.

That little digression does relate to the subject in this blog. I found this piece which I wrote in 2018 for Diabetes Voice; The Impact of Language in Diabetes 

That's right, that's me looking sharp in a suit. After reading through my words of 3 years ago, I've come to the same conclusion; That there are far more important aspects of my healthcare than the words used to describe my diabetes, my management of it and its current status. To some degree, attitude pales in comparison to the importance of my health. I'm a friendly chap, generally, I like a chat and try to get along with everybody I meet but I'd rather a horrible, angry, heart surgeon saved my life than my best mate having a crack with a penknife... I'm rambling, sorry.

We're all different, I know, I get it. Perhaps my stance over Language Matters is soft because of the longevity of my T1D and the serious complications which I've battled along the way. Others react in a demonstrous fashion over words and that's fine. I respect that stance. It can only serve to reduce negative experiences to patients in the clinic. 

How much we, the general public, the PWDs, the diabetics! need to be reminded of Language Matters is something I'm beginning to question. To keep the subject relevant with HCPs is something I agree with. To push it via social media again and again? I wonder if it's more a case of Content Matters in some diabetes circles.

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

 

Diabetes Community Fragments

 

It hasn't been very long since my last blog and I'm glad about that. I seem to be slipping into the habit of writing one or two blogs per week. I write when something related to diabetes is on my mind. Often it's topical, such as the last blog about Diabetes Jokes, sometimes it's simply related to an experience that I'd like to get off my chest. I'm glad it hasn't been long since my last blog because that particular incident ended on a positive note and I feel like I can move away from that, at least for the time being! and talk about something else.

I intended to write about peer support in the Diabetes Community, over the Easter weekend. That was put on the back burner until today. Now, it's time to boil up that pot!

There has been a lot of chatter stemming from some of the larger Twitter accounts about peer support within DOC, GBDoc and many other area specific communities, of late. What usually happens when a few larger accounts "make some noise" is that many others suffer a severe case of FOMO. What on earth is FOMO? It's Fear Of Missing Out. From there, those accounts will usually jump aboard the bandwagon, whether it is positive or negative in nature. FOMO is a real thing for some diabetes related accounts, as is the need to stay relevant and have content. I'll get back to that on another occasion because I'm digressing and that is a subject for a blog all on its own.

Peer support! Yes. We love it, don't we? The drum that I've been banging around peer support is very much a beaten one. I've spoken about the positives and the huge impact it has had on my diabetes management, from overcoming social anxieties to accessing diabetes technology and everything in between, not least gaining lots of friends along the way. I am massively grateful for my peers, mostly within #GBDoc #IREDoc and #NIDoc and I will happily give those people my time and support whenever I am able.

It sounds fantastic. It mostly is. There are, however things I'd like to note and offer some caution over:

- Peer support isn't for everybody.

Just as tech isn't for everybody and we're all different in the way we manage our diabetes, it's important to realise that peer support won't be welcomed by everyone. To have it offered and easily accessible is wonderful but it should never be forced on a PWD. As peer support talk is appearing in healthcare circles, I am very interested to see how this is brought into conversation between HCP and patient.

- Fragmented communities.

It's a schoolyard out there. Ready for a few negatives? Envy, Bullying, Harassment, Stalkers, Drama, Sex, Lies and Videotape!  All of those things can happen in any splinter of society. The more people that are clustered together, the more chance of something nasty happening. From the nasty incidents, the communities become fragmented as individuals "take sides". The subtweets begin, the DMs are sent... sigh, it can get very teenagery even among mature adults. Eventually, people grow tired of the drama and aggression and they leave the community or lock their accounts or simply block those who are the sources of negativity. Personally, I'm a blocker. 

- Leader of the gang.

Does a community need a leader or leaders? I've debated the issue with friends many times. I'm swayed towards No. I've heard some people describe others as "Prominent members of GBDoc" in reference to holding their views in higher regard. That sits uncomfortably with me and has a strong odour of The Old Boy's Club about it. It hints at a pecking order which shouldn't exist on a free to use social media platform. Status and follower numbers do not influence me. I think it's important to hold each other in the same high regard unless words or actions indicate otherwise. So, should Peer Support "Leaders" become a thing then I think we could be in danger of following the path of Advocates and frequently heard public speakers. Which path? Read this blog: Hearing Voices I really hope we don't repeat the mistake of repeating the voices, should the NHS begin selecting peer support leaders.

I've expressed some caution there but please do not be put off diabetes communities. Where ever you find one, which might be helpful to you in managing your diabetes, join in and engage. For the most part, they are wonderful places with wonderful people.

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 Jokes

You already know where this blog is going, don't you? That's right! Easter arrived and the classic Diabetes "jokes" hit social media, as they do each and every year. Oh, how we didn't laugh again.

I understand why people try to be funny online. Sometimes, I make a funny on Twitter and it gets a lot of attention. The likes and comments feed into our need for... likes and comments? It makes us feel good to get positive attention by making others happy. Of course, what is funny to some is not funny to others. That's why we enjoy different jokes and the different comedians, I guess. 

I'm old enough to JUST remember the notorious famous comedians of the 1980s. Roy "Chubby" Brown, Jim Davidson, Bernard Manning, et al. Their routines were largely based around sexism, racism, ableism and generally being incredibly offensive. As we edged into the 90s, such characters became less popular and their acts were only seen at British seaside towns such as Blackpool. Eventually, they faded away from the public eye as comedy rapidly cleaned up its act after the turn of the millennium.

Phew! So, that's that. The nation grew up and we enjoy "smart" comedy now. We do, don't we?

Step forward Richard Osman. Much respected co-host of Pointless, host of House of Games and occasional sofa warmer on The One Show. Richard is widely regarded as a bright chap. He comes across as witty yet warm and friendly. Certainly not the sort of comedian to compare to Manning & Co. So, it was a surprise to read this tweet on Easter Sunday morning:

UPDATE: Richard deleted the above tweet and tweeted an apology here: https://twitter.com/richardosman/status/1379101305164201991?s=19

I am almost certain that Richard is not a malicious chap. The nature of the tweet isn't aggressive, in my eyes. It seems he is trying to raise a smile with a little poetic humour. 

It's not funny.

It's actually very damaging.

Richard has over one million Twitter followers and that kind of social media clout can certainly influence the thoughts of many people. That kind of ignorance can breed stigma, it can breed bullying and it can breed the discrimination many people living with diabetes face. It's ableism. Now that a well known TV personality has published this tweet and (at the time of publishing this blog) has not deleted it or offered an apology for the offence caused, it would seem only logical that young minds, ignorant minds and those who enjoy bullying and upsetting others will repeat it. Perhaps a child will say the same words to another, at school, after the Easter break? Well, Richard from the TV said it! It must be alright.

It's not alright.

Diabetes (note; I'm not referring to type here because ALL types) is recognised as a disability. It appears to be one of the last disabilities that is acceptable to use as a punchline.

It's not acceptable.

Some have replied to Richard's tweet to give him advice on this. Richard replied to a positive comment and (so far) hasn't addressed a single person who explained what the problem is. Silence.

"Lighten up!" exclaimed one .I was almost expecting a "It's only banter, mate!" reply. Obviously the "Joke Police" got a mention. Where would we be without someone referring to The Joke Police, The Thought Police, etc? Thank goodness for that particular reply! Calling out people who make discriminatory comments must have been the issue all along! 

I'll drop the sarcasm.

We all make mistakes. Only last year, I retracted a tweet which wrongly mentioned age and sex. That tweet had a lot of likes and retweets but I recognised that I was wrong to mention anything other than a particular person being a monumental idiot. That was the end of that and that's all Richard needs to do. A simple apology and tweet deletion. He'd regain the good faith of the fans he's lost and, who knows? maybe gain increased respect for acknowledging his offensive tweet and perhaps become even more loved than he was before last Sunday morning.

Joke about your own conditions and disabilities, by all means. Leave everybody else alone.

 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