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.
Monday, June 8, 2020
Wednesday, May 6, 2020
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.
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.
Friday, May 1, 2020
Diabetes in Lockdown
There has been more talk of lockdown easing, recently. Reporters, struggling for questions, have been asking the government about lockdown easing for weeks. Perhaps they're just desperate for a haircut? I don't empathise. So, it might seem strange to write a blog about diabetes in lockdown when the light at the end of the tunnel appears to be getting larger. Keep reading!
I try to be a glass half full sort of chap. You may have gathered that much from my last blog post "Perspective". So while we've all struggled through since mid-March with various complaints and even contracting Covid-19 in some cases there are, I believe, many positives to take from lockdown.
How many of you are rolling your eyes and questioning my sanity?
"Positives from lockdown!? We're going crazy and everything is veiled thanks to my fringe!"
One big positive (debatable) is that you're reading this. So, you're alive! (not debatable) but there are others.
How many of you have started something new? or rediscovered an old love. I've started to play some online poker again. I haven't done so for over 2 years. I've even started to teach a few of you the basics in the hope you'll join in. Check out #GBDocPokerClub on Twitter if you're interested in taking part (it's not for real money) set up by Matt.
Take a look at ART1ST on Twitter too. I had no idea that so many people living with T1D had this much talent, beyond accurate carb counting.
Perhaps you played in the very first #GBDocQuiz last night? 20 people did and it was huge fun despite my shoddy efforts at being the Quizmaster. Serena will be hosting the quiz next time around. Install Zoom and join in. It's a totally inclusive thing. You're all welcome, 8.15pm on Thursdays.
There is a theme developing, as I write this blog; Twitter. The few things above are all babies of those who tweet. There are more:
Diabetes 101 - Incredible info and fun from HCPs, giving up their time for our community.
GBDoc Tweetchats - I'm one of the helpers here alongside Jules, Harvey, David and Gwynnie. Join in to talk about diabetes related subjects every Weds at 9pm.
Pricks Official - Jade has a YouTube guest every Weds at 8pm. Lots of fun and interesting chat.
Some of those things would likely not be happening unless we were in lockdown. As the light at the end of the tunnel nears, I truly hope such things will continue. Despite the worries, illness and increasingly long hair I believe the Diabetes Twitter community is as strong as ever, perhaps stronger than ever. There doesn't appear to be much in the way of bickering, subtweets are few and far between and I haven't noticed any full-blown meltdowns. Still time, I guess.
Your blood glucose may beg to differ (mine too!) but I think lockdown has proved beneficial for PWD, beyond minimising our chances of contracting Covid-19, by encouraging engagements with our peers. How the current situation has affected our mental health may yet to be seen, of course.
Tell me some of your positives from lockdown. Reply below or tweet me and let's keep those positives going when "normal" is back.
I try to be a glass half full sort of chap. You may have gathered that much from my last blog post "Perspective". So while we've all struggled through since mid-March with various complaints and even contracting Covid-19 in some cases there are, I believe, many positives to take from lockdown.
How many of you are rolling your eyes and questioning my sanity?
"Positives from lockdown!? We're going crazy and everything is veiled thanks to my fringe!"
One big positive (debatable) is that you're reading this. So, you're alive! (not debatable) but there are others.
How many of you have started something new? or rediscovered an old love. I've started to play some online poker again. I haven't done so for over 2 years. I've even started to teach a few of you the basics in the hope you'll join in. Check out #GBDocPokerClub on Twitter if you're interested in taking part (it's not for real money) set up by Matt.
Take a look at ART1ST on Twitter too. I had no idea that so many people living with T1D had this much talent, beyond accurate carb counting.
Perhaps you played in the very first #GBDocQuiz last night? 20 people did and it was huge fun despite my shoddy efforts at being the Quizmaster. Serena will be hosting the quiz next time around. Install Zoom and join in. It's a totally inclusive thing. You're all welcome, 8.15pm on Thursdays.
There is a theme developing, as I write this blog; Twitter. The few things above are all babies of those who tweet. There are more:
Diabetes 101 - Incredible info and fun from HCPs, giving up their time for our community.
GBDoc Tweetchats - I'm one of the helpers here alongside Jules, Harvey, David and Gwynnie. Join in to talk about diabetes related subjects every Weds at 9pm.
Pricks Official - Jade has a YouTube guest every Weds at 8pm. Lots of fun and interesting chat.
Some of those things would likely not be happening unless we were in lockdown. As the light at the end of the tunnel nears, I truly hope such things will continue. Despite the worries, illness and increasingly long hair I believe the Diabetes Twitter community is as strong as ever, perhaps stronger than ever. There doesn't appear to be much in the way of bickering, subtweets are few and far between and I haven't noticed any full-blown meltdowns. Still time, I guess.
Your blood glucose may beg to differ (mine too!) but I think lockdown has proved beneficial for PWD, beyond minimising our chances of contracting Covid-19, by encouraging engagements with our peers. How the current situation has affected our mental health may yet to be seen, of course.
Tell me some of your positives from lockdown. Reply below or tweet me and let's keep those positives going when "normal" is back.
Monday, April 27, 2020
Perspective
I've been considering writing this blog for several days. It's not that I've been hugely busy. Is anybody? The delay has been caused by my mixed feelings and differing perspectives being offered, albeit unwittingly by users on social media and friends & family.
I couldn't think of a better title for the blog. "Perspective" seems about right.
Most of you will know me well enough to know that I have a visual impairment. The cause was my Type 1 Diabetes (surprise). The details of which aren't really important for this blog. If you want to know more about it then YouTube me and you can watch me talk about it in detail. This blog isn't about the VI. It's about the perspective having a VI, the treatments and the recovery gave me.
A lot of you might agree, losing your sight or partially losing your sight is a terrifying prospect. I've read some of your tweets to that extent and I get it. Of course I get it. I had to live with that fear for many months and then subsequently lived with almost complete sight loss for many more months! The feeling of losing independence, being unable to see the faces of loved ones, being unable to see and experience everything good in the world. Being a father with two young children and the prospect of missing their growth and the joy of their experiences. It leaves you in a very dark place... if you'll pardon the pun!
I'm 8 years after my last significant eye surgery, today. The sun has disappeared and it is dull and cold here in middle England. And I love it. I've loved a part of every single day since I was discharged. In fact! since I began to regain some visual clarity.
The experience of eye complications changed my perspective on life. I'm grateful for so much more now.
So, here we are still in lockdown. We're all distancing, some are shielding. There is no end in sight and many are getting a little "cranky". Little things can become huge problems when stress levels are high and it's easy to lose perspective. There's that word again! I don't want to invalidate anyones woes. We're all different and one persons "Meh" is another persons "OMFG!" I do feel that sometimes it's important to take a minute to breathe, though. To not rush to the Internet over every problem which might be amplified in your head by the current pandemic crisis.
I can't tell you how to gain perspective and keep calm and dignified. I do say this, with complete conviction - It will get better. You will get more freedom again, schools will reopen, businesses will reopen, you will see your friends, you'll see your family. You'll be back to "normal" even if "normal" is a bit different than before. The sun will come out tomorrow!... Sorry, I'll stop. It will happen but it will take some time. Be patient. Breathe. You'll be rewarded.
Perhaps you'll be rewarded with a shiny new perspective too.
I couldn't think of a better title for the blog. "Perspective" seems about right.
Most of you will know me well enough to know that I have a visual impairment. The cause was my Type 1 Diabetes (surprise). The details of which aren't really important for this blog. If you want to know more about it then YouTube me and you can watch me talk about it in detail. This blog isn't about the VI. It's about the perspective having a VI, the treatments and the recovery gave me.
A lot of you might agree, losing your sight or partially losing your sight is a terrifying prospect. I've read some of your tweets to that extent and I get it. Of course I get it. I had to live with that fear for many months and then subsequently lived with almost complete sight loss for many more months! The feeling of losing independence, being unable to see the faces of loved ones, being unable to see and experience everything good in the world. Being a father with two young children and the prospect of missing their growth and the joy of their experiences. It leaves you in a very dark place... if you'll pardon the pun!
I'm 8 years after my last significant eye surgery, today. The sun has disappeared and it is dull and cold here in middle England. And I love it. I've loved a part of every single day since I was discharged. In fact! since I began to regain some visual clarity.
The experience of eye complications changed my perspective on life. I'm grateful for so much more now.
So, here we are still in lockdown. We're all distancing, some are shielding. There is no end in sight and many are getting a little "cranky". Little things can become huge problems when stress levels are high and it's easy to lose perspective. There's that word again! I don't want to invalidate anyones woes. We're all different and one persons "Meh" is another persons "OMFG!" I do feel that sometimes it's important to take a minute to breathe, though. To not rush to the Internet over every problem which might be amplified in your head by the current pandemic crisis.
I can't tell you how to gain perspective and keep calm and dignified. I do say this, with complete conviction - It will get better. You will get more freedom again, schools will reopen, businesses will reopen, you will see your friends, you'll see your family. You'll be back to "normal" even if "normal" is a bit different than before. The sun will come out tomorrow!... Sorry, I'll stop. It will happen but it will take some time. Be patient. Breathe. You'll be rewarded.
Perhaps you'll be rewarded with a shiny new perspective too.
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!
Monday, April 13, 2020
But you hate blogs!
I hate blogs.
Kind of. I don't HATE blogs. Let me explain...
... Once upon a time, in a different life, part of my job was to write a blog. It was terrible. I cringe at the thought of those posts, the comments and the weekly update. That happened for around 2 years and was probably the worst aspect of that job. I know, right!?
"Writing a blog was the worst thing you had to do for your job!? Poor you!"
How I suffered! I suppose my dislike stemmed from the tedium of it. The content feeding to Google to bring search traffic to the company I was working for. The necessity to "work in" certain keywords and subjects.
I've probably judged blogs harshly because of that job. The diabetes world has SO MANY BLOGS because we've all got views and lots to say. I've started to read more blogs surrounding diabetes and, to my surprise I have enjoyed a good number of them. Don't get me wrong. I'm not a blog lover now. There are still some horrendous blogs and some which are nothing but vehicles for self promotion. One or two are just prolonged sub-tweets but there are some great ones which talk about important subjects and raise thought provoking issues.
So, here I am. Writing a bloody blog. Let's get important and thought provoking.
*Rolls up sleeves*
I've got writer's block already.
Perhaps I should just continue to record vlogs and podcasts instead? I've started now! I'll crack on.
We're living in strange times. You don't need me to tell you that. Diabetes makes us a bit more vulnerable to Covid-19 than most. It's frightening. I think the majority of us must have had moments of fear in the last month or so. I know some of you have had Covid-19 and, thankfully, are recovering albeit slowly. It sounds and reads like a terrible illness.
So, what can we do? We're all being sensible and distancing. Many of you are no longer at your place of work. For the most part, we're all at home and there is only so much TV you can watch. The answer is different for everybody. Your diabetes may vary (YDMV) gets thrown around a lot and rightly so. Your lockdown may vary, too.
Surprisingly! some of you may exclaim, I've never been to prison. I feel this is a little taster of what life in The Big House might be like. Yes, we can leave the house if necessary. Yes, it's probably a bit easier to whip up a plate of cheesy chips at home. But there are restrictions on where we can go and who we see. It is being enforced by authorities. It's not prison but it is a bit... prisony?
I'm not complaining. In fact, I'm happy to be under lockdown for as long as it takes. I might be classed as one of the vulnerable because of Type 1 Diabetes but I have friends and family who are arguably more vulnerable. Some have been told to shield completely for 12 weeks. That's 3 months of going nowhere. Definitely a bit prisony.
We're told that this will end. I believe that. I'm certain of it. When it does end, I fear the next big issue will be a huge surge in mental illnesses. I've had a little taste of PTSD and anxiety, before. It's horrible. I feel sorry for those coping with MH problems and I'm very worried for the HCPs, seeing mass death on a daily basis. There must be a strong focus on their support, once this is over. A support as strong as our NHS is getting from the general public right now.
We also need to take care of our friends and families. Of course we do. You might be making more calls to them, sending more messages, annoying them with funny videos or tagging them to your social media wafflings. Don't stop. Let's bring positives from this awful situation and carry on with that as part of our new, post-pandemic world.
These are dark times for many. An historic time for all the wrong reasons. But, as sure as day follows night we will come out of the other side. I hope as better people. We owe it to the people lost and the HCPs who try to save us.
Kind of. I don't HATE blogs. Let me explain...
... Once upon a time, in a different life, part of my job was to write a blog. It was terrible. I cringe at the thought of those posts, the comments and the weekly update. That happened for around 2 years and was probably the worst aspect of that job. I know, right!?
"Writing a blog was the worst thing you had to do for your job!? Poor you!"
How I suffered! I suppose my dislike stemmed from the tedium of it. The content feeding to Google to bring search traffic to the company I was working for. The necessity to "work in" certain keywords and subjects.
I've probably judged blogs harshly because of that job. The diabetes world has SO MANY BLOGS because we've all got views and lots to say. I've started to read more blogs surrounding diabetes and, to my surprise I have enjoyed a good number of them. Don't get me wrong. I'm not a blog lover now. There are still some horrendous blogs and some which are nothing but vehicles for self promotion. One or two are just prolonged sub-tweets but there are some great ones which talk about important subjects and raise thought provoking issues.
So, here I am. Writing a bloody blog. Let's get important and thought provoking.
*Rolls up sleeves*
I've got writer's block already.
Perhaps I should just continue to record vlogs and podcasts instead? I've started now! I'll crack on.
We're living in strange times. You don't need me to tell you that. Diabetes makes us a bit more vulnerable to Covid-19 than most. It's frightening. I think the majority of us must have had moments of fear in the last month or so. I know some of you have had Covid-19 and, thankfully, are recovering albeit slowly. It sounds and reads like a terrible illness.
So, what can we do? We're all being sensible and distancing. Many of you are no longer at your place of work. For the most part, we're all at home and there is only so much TV you can watch. The answer is different for everybody. Your diabetes may vary (YDMV) gets thrown around a lot and rightly so. Your lockdown may vary, too.
Surprisingly! some of you may exclaim, I've never been to prison. I feel this is a little taster of what life in The Big House might be like. Yes, we can leave the house if necessary. Yes, it's probably a bit easier to whip up a plate of cheesy chips at home. But there are restrictions on where we can go and who we see. It is being enforced by authorities. It's not prison but it is a bit... prisony?
I'm not complaining. In fact, I'm happy to be under lockdown for as long as it takes. I might be classed as one of the vulnerable because of Type 1 Diabetes but I have friends and family who are arguably more vulnerable. Some have been told to shield completely for 12 weeks. That's 3 months of going nowhere. Definitely a bit prisony.
We're told that this will end. I believe that. I'm certain of it. When it does end, I fear the next big issue will be a huge surge in mental illnesses. I've had a little taste of PTSD and anxiety, before. It's horrible. I feel sorry for those coping with MH problems and I'm very worried for the HCPs, seeing mass death on a daily basis. There must be a strong focus on their support, once this is over. A support as strong as our NHS is getting from the general public right now.
We also need to take care of our friends and families. Of course we do. You might be making more calls to them, sending more messages, annoying them with funny videos or tagging them to your social media wafflings. Don't stop. Let's bring positives from this awful situation and carry on with that as part of our new, post-pandemic world.
These are dark times for many. An historic time for all the wrong reasons. But, as sure as day follows night we will come out of the other side. I hope as better people. We owe it to the people lost and the HCPs who try to save us.
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