Hope

 Hurray! A new "End of the year" blog to read.

I know, everyone and their dogs are writing blogs to end 2020. A look back at one of the most bizarre, terrifying years in modern history. So many things have happened in the last year, it would be a mammoth task to list them all and an incredibly boring blog for you to read. I'll try to keep it short.

Personally, I've met (on-line of course) a lot of new people and I've been lucky enough to have been offered some new opportunities in the world of Diabetes. 

Early on in the pandemic, I spoke about Covid-19 and Diabetes on BBC Radio. It was a fun experience. I haven't listened to the interview but I'm told it sounded fine and I came across well. I've spoken to reporters before and I'm always happy to give the perspective of a person living with T1D. 

I think it's important to hear from people who aren't considered "famous". Their stories are often more relatable and just as impressive to me as any well known person. On the It's Medicinal podcast, we've recently started talking to people from the #GBDoc community who you might not know much about (I promise to publish part 2 soon, Gwynnie) and I hope we can talk to more in 2021 despite three busy lives, Harvey, Jules and I will try our best to create more.

The year saw #EnoughNowDoc appear on Twitter as it became apparent that some men have been sexually harassing women in the diabetes community. The disgusting behaviour of diabetes advocates abusing their privileges caused an uproar both openly on Twitter and within group chats elsewhere. My hope is that such individuals are never welcomed back into what should be a safe place for everybody. They will certainly never be given the time of day by me.

As the pandemic dragged on, conferences and webinars sprouted up. I attended several and was offered an involvement in a couple, sadly I had to decline or withdraw from those but I certainly enjoyed taking part in others as an attendee and will continue to do so in future - hopefully in person as well as on the Internet. The brilliant Diabetes 101 provided many free Tweetorials about various aspects of living with diabetes. Thanks, guys! And, of course the #GBDoc Tweetchat continued, every Weds evening at 9pm with a variety of subjects discussed by different hosts.

I've been a part of the Tweetchat team for almost 2 years and I've witnessed it flourish. I'm 36 years down the road with T1D but the "chats" often throw up new things to me. If you don't take part then you really are missing out.

#GBDoc has also seen the many little "clubs" form, recently. I started the #GBDocQuiz which is still running, monthly, today under the stewardship of the Tweetchat account. Fantasy Football has been a fun distraction, too with 30 teams taking part in the #GBDocFF league. Elsewhere there are GBDoc Stitches for you creative types and a book club.

In the last few months, I've been delighted to use the GlucoMen Day CGM. I firmly believe in transparency when it comes to health related tech, provided for free or as part of a "paid for" deal. With that in mind, for every contracted tweet in relation to GlucoMen, I used the #Ad hashtag and kept a pinned tweet on my timeline. I'm very grateful to Glucomen for the opportunity to use and talk about their CGM. My tweets about the tech have always been honest and my own words.

It has indeed been an interesting year for me in regards to diabetes. Did I mention my best ever HbA1c yet?...

So, we head towards 2021 with the dark cloud of the virus hanging over us. Missed friends and family, especially at Christmas is tough for many of us. But! There is hope! There has to be hope otherwise I'd be screwed for a title for this blog.

The creation of a vaccine is truly incredible news and proof that we, as human beings, can overcome what appears to be insurmountable. Those of us living with T1D for a while already know that. It seems the vaccine will put an end to this virus, it's disruption, misery and grief. It'll just take a little time. My hope is that time won't be as long as we thought. Never give up hope. Life rarely stays the same when we look for and find solutions to our problems.

Thank you for reading this little blog. Merry Christmas to you all and I'm sure we'll all have an amazing 2021 with a new-found perspective and joy for life.

You Get What You Give

New Radicals, I think. If I remember it then it must be a 90s song. I like song lyrics. I feel it's a glimpse into the mind of the writer at that particular time. I like to play around with them and try to make them funny or relatable before tweeting them and waiting for the song recognitions and complains of ear worms. I make no apologies for that. It amuses me and I'm often found singing my cover versions in the shower for a few days after.

You Get What You Give is kind of uplifting. 

'Don't let go'

'Don't give up'

'I feel the music in you'

Lovely stuff, but one line made me think of some aspects of social media and a few (kind) comments sent my way recently; 'You only get what you give'

I couldn't agree more when it comes to the #DOC and the community I'm more involved in the #GBDoc.

I try to be a giver (stop laughing) rather than a taker. And it's really rewarding! I know I'm involved in lots of things such as Tweetchat organising, fantasy football and I harassed a lot of you into playing the Zoom quiz during Lockdown part 1 but I don't see those things as giving. The opposite, in fact. I get so much from being a part of those things that they're really not an effort for me. Doing the things you love is never work.

My giving comes from engagements and my time. I try to answer and acknowledge every tweet reply and message to me. I've nearly 3500 followers on the tweet and close to 1000 on the insta-thing so sometimes a popular "post" turns into an avalanche of engagements. I'll answer, though and I'll take the time to read others' tweets and posts and engage on their subjects too. In return, I've made a lot of friends and opportunities have come my way. I'm amazed when an opportunity is offered to me because I'm just... me? A Joe Bloggs T1D. I don't run marathons or climb mountains. I'm not media famous. I certainly don't have a bikini body. I'm a middle aged man who talks about diabetes on the Internet. 

Perhaps there is something in that? Just trying to be kind and offering your time and experience to others when they ask for it. I don't really know. I'll carry on doing what I do.

I wonder if some have high expectations of online communities? Feeling entitled to various things despite offering very little in return apart from a daily tirade of spam and talking themselves up. Or hurtful passive-aggressive messages followed by bewilderment at being ignored. Certainly, when the community fails to respond appropriately there is a sense of anger and frustration from those individuals. Each to their own, of course but I for one don't feel the music in them.

Complicated

I think the majority of you will know about the complications associated with Type 1 Diabetes. Perhaps they were hammered into you at a young age? I remember a DSN once offering me a tour of the amputations ward and promising me that was my future if I didn't "buck up" my ideas. I was probably 12 years old and the invite didn't make me buck up my ideas in the slightest. Perhaps you've read leaflets or things on the Internet? Or even a had some kind words spoken to you by a HCP. The point is we mostly know about the eye things (I certainly do!) and the kidney stuff and the dickie hearts and the nerve damage. Yep, we know the big stuff already. They're scary but we carry on and we do our best because what choice is there?

What doesn't get mentioned as often, perhaps because they don't make sexy headlines, are the less serious but arguably more frequent complications.

I've had a sore and stiff shoulder for a couple of months. It's gradually become worse to the point that I've sought medical attention. It looks like it might be a frozen shoulder, at this stage. I'm taking Naproxen and I'm about to embark on 2 weeks of exercises before the physiotherapist decides on the next move. Before my "embracing" of my diabetes and jumping head first into social media I had no idea that frozen shoulders were associated with diabetes or even what a frozen shoulder was! Another great reason to join in with your peers on social media, I guess.

Shoulder aside, the latest possible complication on my diabetes journey has brought the other lesser-spoken-about complications to my mind. I'm delighted that mental health has been spoken about more often in relation to diabetes, as are eating disorders and perhaps a bigger focus will fall on those in the years to come but what about the other "niggly" complaints that we shy away from or just shoulder (pardon the pun) the burden of quietly?

Let's get straight into the biggest "little" one! Sexual dysfunction. @diabetic_me and I have spoken about this one, albeit briefly in a podcast. Following those few minutes of audio back in 2019, several men got in contact with me to tell me about their problems and to ask advice. I'm not a medical professional and don't give advice so I could only offer supportive replies and suggest a chat with their HCPs. The common reply was that they couldn't because they were embarrassed. I've heard of similar issues facing women too. I cannot find an explanation as to why it is embarrassing. I wonder if the smirks and jokes from our youth remain fresh in the memory as an adult? Perhaps the jokes and bullying online make it too much of a risk to talk about. I wonder, if I ever needed help for this complication, would I seek it? Honestly, probably not. I'd probably look for a private and no doubt expensive solution. And this is me! I'll talk to anybody about anything, right? Still, the stigma. I get it. It needs to end for both men and women. 

So, HCPs! If it's an embarrassing subject, bring it up! (stop making me pun) and treat it as a matter of fact health check. 

How about something more common? Fatigue. Everybody gets tired, don't they? But have you ever worked a long day with high blood glucose, peeing out every fluid in your body because you over treated a biblical hypo at 3am from the night before? You were so full and bloated after that hypo that you couldn't sleep and had stomach cramps. But you had to work. Another sick day doesn't look great. So, in you go. Bloodshot eyes and into autopilot.

Perhaps that fatigue brought on a migraine when you got home? You couldn't really eat much dinner, which you'd bolused for, and it sent you hypo again. So you're trying to stay alive now while feeling nauseous and that headache isn't getting any better.

Meanwhile you're ignoring your friends and family. They want to talk to you, see you, go out for a meal or a drink or do something fun. But your head is throbbing and mostly over your toilet bowl as you throw up that bottle of energy drink which you drank too quickly to fix the hypo.

Fatigue, I would argue, is certainly a complication of diabetes that you're almost guaranteed to get at times. Nobody appreciates the luxury of a full nights sleep like a T1D.

What else? How about those grouchy moods? When you're hypo and somebody dares to exist in your company. Or hyper! and that day in 2004 when somebody jumped the queue in the coffee shop! Grrrrr! Is mood a complication? I certainly feel less my "normal chirpy self" at the top and bottom end of the scale.

How can these things (and others) be resolved? I think talking openly is a great starting point. Shall we continue? Tell me what other problems diabetes causes you in the comments box below.

Inactivism

I've been thinking about writing this blog for a few weeks and considered a vlog but I felt my spoken words wouldn't adequately express my thoughts. So, here we are. It's another enthralling blog and I apologise that this one won't be very cheerful.

Ah! What's the point?

You've probably said that in regards to your diabetes, before. I certainly have when my BG won't drop or I'm Yo-Yoing around from hypo to hyper. It's exhausting and I think it's only natural to look for the "easy out". In some ways, not caring for a few hours or even a day or two feels like self-care. It might save me from burnout and help me to retain some sanity. Of course, it's not a long term solution to T1D and the burden of managing it. Eventually you HAVE to care at least a little bit.

I think that's pretty standard for most chronic conditions. If you never care or take any interest then it seems likely that further problems will occur or your life will be shortened. The various list of diabetes related complications are well documented. Indeed, I know one of them very well! I have no desire to get friendly with any of the others so I do what I can to minimise the risks.

I'm active in managing my T1D. I'm very active in the online T1D communities. I read a lot and try to understand the things that are new to me. I believe those things can only be positive when it comes to my health and my long term outcome.

Diabetes aside, I live with other conditions, as many of you do. Some (such my eye conditions) are relatively new and only a decade old. Others are lifelong. Because of those I've faced discrimination from lots of different sources since the day I was born.

Whaaaaaaaaat?

Yes, it's true.

At 4 years old I heard an adult suggest to other adults that I shouldn't be at school. I had forgotten about that incident until my mother reminded me about it. She was furious and I believe she tore into the adult in question. Nothing further was said. My first taste of disability activism? September 1981.

I've never felt particularly active in disability activism. I've had good friends who have stood up for me. In my late teens I once stood up for myself a little too firmly during an exchange of views, in a pub. I'm sure that chap's jaw is just fine now. (I was 18, it never happened again)

Since the Internet arrived, more so social media, I've been more vocal about discrimination. Perhaps even more so in the last couple of years since my Twitter audience has become quite large. 

Now, I'm tired. Just as T1D gets exhausting from time to time and I switch off, being anti discrimination is tiring.

I've probably picked too many fights. Fights that aren't mine because I'm outraged. I've yelled into the void about the unsavoury and privately been agreed with and supported by so many different people. The same people who willingly follow and continue to engage the unsavoury. What does that tell me? That my experiences aren't important enough. Those who are guilty of such behaviour deserve the time and energy of others who KNOW what's happened. And it's not only me. And it's not only ableism. It's tiring when even your friends seemingly don't trust your words and the different words from others.

Right, I've had a little vent. Breathe.... breathe...

Back to the self-care thing. I'm taking a big step away from social media activism of all kinds. I will continue to try to treat everybody as an equal, of course. I'll still be anti-discrimination. I won't be quick to fight the fights of others. Discrimination isn't going away any time soon while passive agreement of it remains.

Thanks for reading. I know that wasn't very diabetesy. I promise the next one will be.

Influenced?

Influenced not Influenza. Get your Flu jabs!

Now that's off my chest, on with the blog and let's get straight to the point - I've been... "labelled"? as a Diabetes Influencer but it's not as bad as it sounds. I won't be found posing on Instagram (more than usual) in photographs wearing my Mankini, trying to sell the benefits of a cinnamon-based diabetes cure. No, it's in regard to diabetes conversations on Twitter.

I like Twitter. I especially like the #GBDoc community and those who use it and the hashtag to give and gain support. It has undoubtedly improved my T1D management and opened many doors for me. My favourite door is the huge increase in new friends and, remarkably, they've all got T1D! So, I guess I talk about living with diabetes a lot, especially on the tweet. Never the less, I was rather surprised to be tagged into a tweet which led to this web page:

https://creation.co/knowledge/key-influencers-and-topics-in-the-online-uk-diabetes-conversation/

Yeah, there I am in that mostly illustrious list of people with diabetes, who talk about diabetes to other people living with diabetes, on Twitter.

How I make such lists? I don't know. Although! I once won the funniest diabetes tweet of the year. 2018, I think. I'm still proud of that one although I can't remember the tweet. Don't joke about diabetes, though. It's not funny.

I'm really not THAT funny and I certainly don't feel like I influence anybody. Others, it seems, think differently. That's fine. I'm happy to use my Twitter account to retweet good info and help raise the profiles of other, good causes. Twitter has scratched my back many times. It seems only fair to scratch it back, now and again.

I like to think I'm supportive of the diabetes community on Twitter. I answer my messages and cries for help, I acknowledge or reply to tweets to me, I take part in most of the tweetchats, quizzes and other "spin off" activities which are related to #GBDoc. I see myself as a supporter. I get it, mostly and when I don't get it I try to understand. Influencing seems a dangerous activity when the subject is health related. Diabetes varies so much from person to person. To offer general advice or solutions seems like dodgy ground. Remember, It's All About You

If influencing is your thing and your job or your sideline then cool. It's not for me. You drank your four cups of coffee today, didn't you!?

Don't Talk To Me About Heroes

I still remember my heroes from my youth. They're still my heroes today to a degree, although I now view them as just extremely talented people rather than the deities of my teens. I'm sure Eric Cantona and the Gallagher brothers will be devastated by that news.

Who is heroic, what an heroic act is and who inspires me have all changed with age. I'm aware that makes me sound like a wise pensioner. I'm neither wise nor quite that old.

Recently, I read a Facebook status from a friend of mine. We went to Primary and Secondary school together. Although she was a year older than me and we never spoke about diabetes at any length, there was a "quiet friendship" between us. The same for another friend of a similar age. We all knew we had T1D but it wasn't the T1D Club. We didn't get together to talk about insulin. I digress! My friend has had T1D for 40 years. She has a family, going through childbirth more than once without the help of CGMs or pumps, has seemingly lived a happy life and currently has no complications from diabetes.

Is she heroic? I don't think so. She is certainly inspiring to me and I'm absolutely delighted that her life has gone and is going so well. I made a post about this on Twitter and the vast majority who commented agreed, some sharing their own T1D "longevity" story. A small minority took the tweet as some sort of indicator that having complications must make them a failure. That is so far from the truth that it would be laughable if complications weren't so cruel and serious. I mean, I should know right? Having lived with eye complications for 10 years.

I find the stories of those living a happy, long life to be uplifting. There is often a sense of doom and gloom surrounding T1D. A sense that life will be cut short and complications are a guarantee. That you might never have children must be a terribly upsetting prospect for many and mostly untrue. Those things, along with "You'll be blind in 10 years" are also simply not true. This is not the 1970s. You can have T1D and live a long, fulfilling life.

Are there heroes within diabetes? I think so. I think those who work to get the best outcomes for people living with T1D could be described as heroic. "It's my job" is correct, largely but for those who go the extra mile, those who don't take a day off, those will be reply to a message or email on a Sunday evening because somebody needs help or advice - that's heroic to me because you're making a difference without any incentive to do so. You make a difference because you passionately care and it makes no difference to your bank balance.

Not all heroes wear capes.

It's All About You

Health is a very personal thing. It's also a very unique thing, as seen with the current Covid-19 crisis. The differences in symptoms and illness severity are vast. The same appears to be true for Type 1 Diabetes. (I imagine it's the same for most other health conditions too!)

I'm very open about my T1D. I've been chuntering on about it online for a few years now. I've spoken about my eye complications, which relate to it as well. I do that because the engagement I get from my peers is informative, it's supportive, it gives me a greater understanding of others and their diabetes. Over time, it's brought about many positives including meeting and becoming friends with some truly amazing people.

But (and there has to be a but or there wouldn't be much more to add) despite all the engagements, the almost daily conversations about T1D, the articles I read, the videos I watch, the conferences I attend and the many different social media platforms I use, I know VERY LITTLE about how others manage their diabetes, the nuances, the different points of view, the wants, the needs... Your diabetes does vary! I know little bits about lots of people. Not enough to advocate anything for them in relation to their diabetes apart from staying alive and well.

So, how can anybody talk for others in regards to their health? I've had long-standing relationships with various HCPs and I wouldn't want any of them to talk with accuracy and conviction about any aspect of my health apart from the basics, especially my diabetes! I don't know about you, Reader but my T1D is constantly changing. It's why it's such an exhausting condition and possibly why so many feel they have to micro-manage it. How can any one person talk with conviction about the diabetes of others? It's rarely the same even daily.

This is where my problem lies with "diabetes advocates". Not all diabetes advocates. To some extent we're all advocates because we all want the best outcomes and care, I think! If you don't then there are probably bigger issues to address. I'm specifically referring to anybody who speaks on behalf of a community or group of people, about very specific aspects of their diabetes without speaking TO them first. Or perhaps speaking to a few select people and assuming their opinion represents the general consensus.

Don't speak for me until you've spoken to me

Twitter appears to be great at getting things wrong when it comes to assuming opinion. Do you remember all those polls from elections and referendums gone by? Yet, here we are. Brexit happened, Labour were trounced and Trump is doing whatever Trump does. It would seem foolish to assume a community on social media represent a much larger community of PWDs who don't talk about their health online.

What's the solution? Personally, I try to talk about my health, my concerns, my needs and how everything is affecting me. I think that's largely true of most advocates. They share their stories and how they think things could be better from their point of view. And that's amazing! That's true advocacy because it's personal. It allows for an empathetic response to anybody reading or hearing it.

We want...

You want, some of your friends might want and probably a few others you've never spoken to. Unless you've spoken to everybody or even an adequate sample size of people, can there really be a "we"?

We're all in the same boat!

No, we all sail the same stormy seas in different directions, on different boats. Some are similar. Mine has a lot of barnacles.

We all need pumps...
We should all be on a LCHF diet...
Everybody should be looping...
We all want Diabetic Dad to stop hoarding coffee...

Those things are just unreasonable assumptions based upon comparatively limited experiences. Especially that coffee thing! Send more coffee!

There are, of course, exceptions. We want good health and medications. We want insulin, obviously.

Thanks for reading.