Upgrade

I wrote a tweet, a few days ago, where I mentioned my new insulin pump set up appointment. It's been a long time in the coming. You may have read some of my Path to Pumping blog posts, which began in 2021 and ran into this year. I'm still on "The Path" but the finishing line is very much in sight. It's been a journey, only matched by reality TV contestants as they reach the final stages before returning to a life of obscurity, and I'm delighted to finally be moving on - on to a new NHS funded pump and consumables and a reassuring warranty. 

The tweet? Yes, I noted that the upgrading of Diabetes tech is a strange, almost emotional, affair. Not at all like upgrading a phone or a TV. I thought nothing more of it yet, the tweet got a surprising amount of Likes and some offered their thoughts which seemed to be in agreement. Fantastic, I do enjoy social media engagement. However, that particular tweet must've reached more eyeballs than I thought and, following a few messages and emails, I'll be talking to Diabetes UK's Balance magazine on Sunday to discuss the subject of T1D and tech & upgrades.

The subject has been bouncing around in my brain since agreeing to the interview. The words of others have found my "hard relate" button. I don't know of any other technology to have had such a profound affect on my life. A car certainly changes a person's life, affording us more freedom, and if you pass your driving test at 17 then freedom is a huge thing! But, if I didn't pass my test, didn't get a car, then I suspect my life would've gone in a similar direction - probably less nipping out for a takeaway! Indeed, I haven't driven for 12 years and I've got by thanks to various other drivers. Really, that's as close as other technology has got to matching diabetes tech for me and it's still a million miles away.

I think the subject underlines just how much I value my health, today compared to the the years gone by and also how incredibly important access to this technology is. I've seen the data for things such as HbA1c and Flash / CGM use, there are likely similar numbers kicking around for insulin pumps and, lately, looping. The cold, hard, numbers are important but they don't give the full picture. 

Technology has reduced my T1D burden beyond how I can express it in words. I feel that it's reduced it to such an extent that I don't have the T1D that I used to have. It does't feel like the full condition, now. Don't get me wrong, it's still absolutely crap on many occasions but not nearly as much work as when life was full of injections and finger pricks. I've noted many times; I'm blessed. My fund raising for Action 4 Diabetes and learning about their work in South East Asia has really underlined to me just how blessed I am.

The pump switch over is on Monday afternoon and I'm really going to miss this little black chunk of plastic and metal and battery. I've upgraded my CGMs, moved to different ones, taken CGM breaks, etc many times in the last 5 years but since starting on pump therapy I've remained on pump therapy. That'll be 15 months without an insulin injection. I've grown to love the pump. It's on my person all the time unless I'm taking a shower, we go on walks together, meals out, it's met my friends and I spoon it to sleep at night. Next week, it'll be safely back in its box with the battery removed. Another will take its place and do the same job in keeping me alive and well. Soon after, I'll say goodbye forever as the old pump is sent to another living with T1D. I promised to pay it forward and that's what will happen.

Not exactly a tear jerking moment, I know. It's a great moment for me and the next person to use the old pump. Paying it forward is a great thing, too. If you do find yourself in possession of spares then try to not let them waste away. There is nearly always somebody else who can use your old tech or consumables so pass them on... oh! and don't go profiting from it. I know some have sold pumps and fair enough if you bought it in the first instance but, if that tech came from the NHS then please give it back so they can use it to train staff members - assuming you know of nobody who you can pass it to for free. 

Upgrading diabetes tech is so different to upgrading our home technologies, our cars, the machines we use at work, etc. None of those will likely improve your health, I suspect very few of them wake up with you in the morning and it's unlikely that you'll get the opportunity or have the inclination to pay them forward.

 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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Nothing To See Here

Me wearing sunglasses and a black hoodie, standing in a field with a line of trees in the background on a bright and sunny day.

It looks like summer is coming to an end in the UK. At least, the super-hot days have been replaced with warm days and decisions to make about what clothes to wear when you venture outside. Hoodie's cover many bases and that's what I chose to wear, in the photo above, while on Day 2 of my Steptember Challenge, yesterday - more on that later in the blog post.

You may have already heard about my story of sight loss and subsequent visual impairment. It must be around 15 years ago when I was first told "You need lots of laser surgery" followed by panic, appointment avoidance and, 3 years later, a rushed appointment to Eye Casualty which ended with "I'm going to be seeing a lot of you".

He (my eye surgeon) was right. I was in the operating theatre several times from 2010 to 2012 and then again to fix ocular hypertension in 2014. For 18 months of my life I was almost entirely blind and unsure if I would ever regain any sight. 

I'm not here to repeat my eye complications story, today. The experience changed me and, to be frank, had I not regained any of my sight then I'm not sure where I would be or if, indeed, I would be here at all. I'm grateful for what I have rather than regretful of what I've lost. 

Diabetes is well known to be associated with sight loss, you probably know that. You might be scared of that happening to you, you might have experienced sight loss already or you might be avoiding the subject entirely - in which case, congrats on getting this far into this blog post. I'm acutely aware of what sight loss means and what it feels like to live with. 

Between 2010 and 2012, I was active on Twitter. 'Whaaaaat?! But your account was created in 2017!' - That's true. The account you know me from (@DiabeticDadUK) was born in 2017 but I've actually been on Twitter since the very early days in a professional and personal capacity. In 2010, I had no niche. I would tweet about anything and everything and it was fun until my retinas went pop.

I was aware of accessibility on my iPhone and after having it activated for me (I couldn't see the screen) it became my lifeline and an escape from my loneliness. Visual impairment robbed me of:

- The ability to drive.

- The ability to work.

- A social life.

- My favourite hobby (playing poker)

- My confidence and self-esteem

- I could continue this list forever but you get the idea.

The accessibility feature on my phone allowed me to stay connected. I could hear messages, the news, sports reports, who couldn't believe what on Facebook, if huns were OK and tweets! The tweets were my favourite thing because I could talk to lots of people and share stories and still laugh despite my condition. The most frustrating thing was when somebody would tweet a photo. I yearned to see what they were happy, angry, sad or excited about. I couldn't, nobody was describing their photos and I was left to concentrate on tweets which were text only. 

Here we are, in 2022, over 10 years later. I can see well enough to not need accessibility switched on. Again, I'm incredibly grateful. However, there are a lot of people in the diabetes communities which have a greater degree of visual impairment and they do need accessibility. These days, there is an ALT text option on tweets which contain an image or GIF. Amazing!

Last week, I launched the Accessibility Pledge on GBDoc through the @GBDocInfo account. As a community volunteer, I wanted this to come through the community and not through my own personal account. Other volunteers were happy with the pledge and we've all been trying to follow it since Sept 1st. It's been wonderful to see so many individuals adopt the pledge and adjust how they use twitter when it comes to using ALT text. You're a great bunch and I salute you all for doing that with such good spirit and kindness towards people living with visual impairments.

Other community accounts have adopted the same approach as GBDoc, too. I'm very happy to see those accounts setting a great example of accessibility to their followers. 

Sadly, despite encouragement and tagging other accounts we've yet to see a response of any note from the big charities and diabetes organisations which are not using ALT text. I have written to the CEO of Diabetes UK, Chris Askew, a person who has always been engaging and friendly with me - indeed, Chris was kind enough to host a GBDoc Tweetchat for us a few years ago - and he has promised to flag this up to the right people in his team. I think/hope we'll see changes to the DUK tweeted images very soon. 

Update: Diabetes UK now use ALT text regularly on their tweeted images. Thank you, Chris and team.

JDRF UK would be the next port of call for diabetes charities. As wonderfully active as the JDRF staff are on Twitter, very few seem eager to use ALT text. The JDRF UK account managed to use it once, in the last week. Quite why once and then not again is baffling and infuriating to people with visual impairments. On Saturday (yesterday), JDRF UK were very active in promoting a virtual event which I would've been delighted to amplify to my followers and across GBDoc accounts. But, sadly and inexplicably, no ALT text had been used so, I couldn't promote it. I can't amplify tweets which exclude people and tweets which contain no image descriptions are excluding a great number of individuals.

I think I've offered enough "heads up" tweets to JDRF UK and again here in this post. I won't be trying to send an email or a private message to the CEO or other staff members for fear of harassment! I'm also aware of wasting my time and energy in some places and I'd rather focus that on organisations who listen to community members and acknowledge their communications. I hope JDRF UK will follow the lead of others in this regard and do the right thing very soon.

Update: JDRF UK now use ALT text regularly on their tweeted images. Thank you.

I have a lot of connections and good relationships to lovely people who work in the world of diabetes. I will be approaching them all in due course, should they be omitting ALT text from their tweeted images. 

Guys, seriously, this is NOT work for you. Some of you are speedy-ass typists and excellent writers of copy. To describe your images in a sentence or two will not break you. I promise this is not some kind of a scam, I do not want your sort codes. Start doing this today, please! Even if you tweet one image every month, use ALT text on that image. It won't detract from your enjoyment of Twitter - you might even gain new followers and friendships because of it! It's a win/win situation. 

The Steptember Challenge? My poor, achy, feet. Find out more about this here

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

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Peer Judgement

I've been a vocal advocate of peer support within Diabetes for a long time. It would be strange, in my position, to not be. The list of support, help and friendships offered to me has been incredible and I'll be forever grateful.

Alongside my peer support gushing, I have been deliberate in my attempts at trying to warn others about the potential pitfalls of engaging with peers within Diabetes circles. The ugly side of peer engagement rarely sticks its head above the parapet fortunately but it is there and as more official avenues of care begin to recognise the positives of peer support, I think it is very important to have a firm safeguarding and vetting procedure in place to at least minimise, if not eliminate, the possibility of damaging engagements between people living with Diabetes.

The Internet is a wild place. Anybody can create accounts and spout all kinds of hate, extreme views or health damaging advice.

"He's clearly not using the technology correctly..."

"Perhaps his grocery bill would be lower if..."

"The truth hurts" - A personal favourite of the peer judges.

Those three came from one person, a person who lives very locally to me and who (at the time) was claiming to be an active volunteer for Diabetes UK. He wasn't a volunteer, of course and it became apparent that he had aired his views about others' Diabetes management across social media resulting in various bans and outrage from other peers.

I think the great thing about Diabetes Twitter is the unquestioning welcoming and support of new people. I hope that remains because we were all newly diagnosed and frightened, once. I hope that remains despite the recent welcoming of an individual who claimed to be a student nurse, recently diagnosed with T1D. Tonnes of love and support from various quarters arrived in his life. At the same time his true colours became apparent. The colours of a racist, ableist, liar. The Twitter community noticed and large numbers were quick to express their displeasure before turning their back on that person.

This week, I passed the two month mark in my pumping journey. It's been great and I felt very encouraged by the real life changes as well as the improved numbers. I tweeted my numbers for a comparison to my life as a Diabetic on MDI. Much positivity followed until this reply:

"So clearly not worth having such an unsightly pump?! What gets to me is how damn ugly & unsexy all related to diabetes is!"

I did reply, later on but when I read that response I was angry. I was angry for others more than myself because I'm a man in my mid 40s and, after living a life with disability, I am almost numb to hurtful comments. I was angry for the newly diagnosed, the children, the impressionable, the low on confidence... I can't imagine how the teenager felt, after starting pump therapy recently, once they had read that response. How would you have felt? So, I didn't reply immediately. I retweeted the comment and invited others to share their views. It's a few days later, now and their tweet is still attracting replies. I think that underlines the strength of feeling and the general dismay.

What does pop up occasionally, if I've highlighted something which is horribly offensive, discrimination or possibly damaging to the health of others is the old "They're allowed an opinion" response. Sometimes dressed as freedom of speech and sometimes with a heavy hint of accusation with a #ThoughtPolice hashtag. Here's the deal; If a person responds to something you've done or said with words that express offense, that they feel discriminated against, that they're worried your words or actions could be damaging, then it's probably not for fun. It takes bravery for a person to call out these things. Then it's down to you to take a breath and consider if they have a point, was it a misunderstanding you can clear up or do you need to re-evaluate things? Perhaps even apologise!? I think everybody should be free to express themselves if that expression is not going to cause distress or damage to another person or persons. That would seem to be a reasonable, kind way to live and engage with others.

Words which struck a chord with me came from Dan Newman (@T1D_Dan) when the subject of harassment came up during an online conference. Dan said that if you read something which you don't like then simply block that account. He's right. You're not obliged to respond to anybody and your only duty on social media is to that of your own well being. You may be questioned, I certainly have been, about why you've blocked X, Y or Z. You don't owe any explanations to anybody. Do all your social media in a way which is comfortable for you and not others.

It seems that peer support could be a part of your Diabetes care through the NHS in the future. To the decision makers, the leaders, I encourage you to tread carefully by vetting each person you enlist, reading their social media and asking others for thoughts. If you offer somebody a job then you ask for references, don't you? and to everybody else online or otherwise; Stranger danger. 

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

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