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!

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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!

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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

Unsolicited

 

Splainers Gonna Splain

"Mansplaining" has been a well used term in social media circles for years, now. If you Google "mansplain" then the definition you get is as follows:

(of a man) explain (something) to someone, typically a woman, in a manner regarded as condescending or patronizing.

That seems accurate. You don't need to search too hard to find incidents of mansplaining on social media and in everyday life. I don't know why men do it, I don't know why I've done it! I'm certainly guilty of being that person, previously. I think the majority of splaining comes from a good place, a helpful place. However, it is condescending or patronising in many cases and since becoming more aware of that I have tried to refrain from doing it entirely.

Strangely, everybody can be the victim of a splainer - including me. In fact, I've become the target of splainers more often in recent times. That might be because of lockdown and individuals spending more time online rather than interacting face to face. That splaining itch just has to be scratched!

I've begun to pay more attention to who is splaining, especially on Twitter, and if it's just me that is the target of such knowledge sharing. Men are largely the guilty party but there are women who are also keen to offer unsolicited advice. It is generally the "qualified" who are at the front of the advice giving queue. I've used inverted commas around qualified because just how qualified these individuals are is certainly debatable. Some are HCPs and, worrying, offer detailed medical advice based upon a tweet by another. That's pretty dangerous stuff and the primary reason for writing this blog.

Some of the unsolicited advice that's come my way has involved suggestions to change my basal insulin, to change the dose of my basal insulin, to take a trial of a patch pump, to go on a DAFNE course, to visit XY & Z's website to learn how to exercise with T1D, to "Read a blog that I wrote" about whatever I happened to be tweeting about, to consider protein amounts in food... I think some of you may even remember my "destructive" cheesy chips thread? and on, and on, and on it goes.

It is infuriating.

I understand that the majority of unsolicited advice comes from the heart and is intended in the best possible way. However, I am a 44 year old man. I've had T1D for 36 years. I have a very good A1c and a very good time in range. If I need or want to learn more about any given subject, diabetes or otherwise, I have this new-fangled tool called The Internet, which is bursting with free advice from recognised authoritative sources. If I cannot find the information that I need then I will ask for help, sometimes that'll be via social media. THEN, splainers is your time to shine and not before. By all means ask if I need any help or advice and offer yourself - that is absolutely wonderful and kind and the right thing to do. 

I know this is another ranty blog and I'm a little bit sorry about this one, as opposed to the last one, because I know splaining isn't a malicious act. Please, splainers try to think about your replies to the social media posts of others. Please give help and advice when it's asked for and not otherwise. 

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

Freak Like Me

 

I'm sorry about the photo. I know scary clowns are a little too scary for some! Ignore him and look at these words instead:

Disability discrimination

It's at this moment that I expect the vast majority of you to leave. That doesn't surprise me. The subject of ableism appears to turn off a good number of people. It's uncomfortable for many, as seeing disability is, as my own disabilities are.

In an earlier blog, I mentioned a time in my childhood when I first encountered hate towards disability. It was 40 years ago and I suspect if it happened today, in this country, there would have been far more serious repercussions for the perpetrator. Thankfully, things have improved for people living with a disability. I haven't experienced anything beyond schoolyard jokes (apart from one incident in a pub) and comments since... well, school. One of the latter experiences of school ableism was a time when I was referred to as a "freak". I'm pretty laid back and can sometimes turn hatred into a joke. That ability saved me from bullies on several occasions, that and having a few very tough friends. Obviously (watch it!) that was quite a while ago but that doesn't mean it has gone away.

My experiences of ableism revolve around Internet communities. I suspect that to be the case for other forms of discrimination. We hear a lot about racism directed towards sportspeople via social media. It's a massive problem, along with other forms of discrimination and hate, but I'm aware that it isn't only dished out by bigots with keyboards. The same applies for ableism. Just because I haven't experienced it in real life recently doesn't mean it isn't there and isn't happening to others frequently.

This is a tweet from my friend, Meg

Pretty nasty, huh? I don't get it. Is it funny to shout out remarks and mock strangers in the street? I know the answer, of course but what is going though the minds of people who do this? Are they living a troubled life and openly mocking a woman with a disability makes things better for them? I have so many questions. Perhaps it IS funny to them and can be spun as "banter" as many incidents of hate are. 

"I was only joking, mate!"

Oh, right. My bad. I thought I was the circus freak, doing the funnies, not you. 

It's very easy to search social media and find other instances of a similar nature. Sometimes, you don't need to search. It might just appear on your timeline because it's one of your friends who has experienced it. Support your friends/followers, please. If they are brave enough to mention their disabilities and why something is hurtful then the first thing you do is believe them. Don't tell them they're being sensitive or reply with various hashtags, sarcastically referring to "Thought policing". Don't suggest they report the tweet if they find it offensive, either. We all know Twitter aren't acting on any ableism because we, the disabled, cannot possibly be offended or stigmatised!

This has become a slightly ranty little blog and for that I make no apologies. Please:

- Do not mock or shout hurtful comments towards disabled people. This may be considered a hate crime in the UK.

- Do not joke about disability in any form unless it's YOUR OWN disability.

- Do not suggest things to "improve" a service which completely alienates people with a disability. That sort of ableist trash is all over social media. If you have an idea then consider accessibility before anything else. If somebody calls you out on it then adjust your idea or remove it. 

Why wouldn't a person do those things as a basic starting point? Perhaps they don't like a disabled person, being superior to them by noting their discriminatory nature.

I'll put my soapbox away, until next time.

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