Showing posts with label JDRF UK. Show all posts
Showing posts with label JDRF UK. Show all posts

Sunday, June 30, 2024

Changes


"Pretty soon now you're gonna get older." 

Bowie was right, of course. We all get old(er) and with the passing of time there are ch, ch, ch, ch, changes to face... maybe even strange ones! I've reached a juncture in my life when changes are happening rapidly. Today, I thought I'd write about a few of those and why change isn't to be feared. 

I've written about many changes that relate to my Type 1 Diabetes over the last four or five years. From the unnecessary fights to access technology to the arrival of a new family member, Billy - my Cocker Spaniel, and everything in between. It's surprising just how many day-to-day things can impact diabetes management, and that's just life. Life with diabetes, at least. Perhaps life events, the changes, are a part of the extra 180 decisions that we diabetics must make each day. The adjustments we make to stay well in the short and long terms are probably done without much thought for the "seasoned diabetic." I suspect those who have joined the club relatively recently will be acutely aware of the changes they must make to stay on the right side of the daisies. 

So, what's changing? Firstly, some background; A couple of years ago, I became very involved with a lot of different diabetes roles. It was great. I even applied for a position at JDRF UK because I loved it so much. It was (and still is to some extent) a positive way to work - paid or voluntarily. During the Covid lockdown years, I spoke at and helped out with webinars, I spoke about diabetes on BBC radio, and focused a lot of time and energy on helping GBDoc. Once we were set free of our homes, I spoke at and attended conferences, I helped to create and attend get-togethers, I launched a T-shirt store to support a children's diabetes charity in South East Asia - eventually joining their brilliant advisory group. I got to know the inspirational Jerry Gore who spoke with me on many occasions about the issues in Ukraine, resulting in every ad' penny and "Buy Me a Coffee" penny being donated to MSF. Six weeks of my life was spent supporting Jerry on a daily basis via several social media accounts (the adding of info and updates) - I'm going to talk about Jerry in more detail on another blog. He really is a great human...

...this is becoming a "look at what I've done" paragraph. I'll stop there. The point is to highlight just how easy it is to become "entrenched" into diabetes related work. I know from conversations with many of you that your goal is to work in diabetes. That's admirable, it really is. Some of you have created community spaces with that in mind and that deserves much credit. Running a community is a thankless task for the majority of the time. The rewards can be fantastic, however. 

What's changing for me in all of the above? An old friend of mine from Vilnius dropped me a message in mid-2023. He wanted some help to complete his new website and for somebody with "a gift at marketing through written words" to polish the published pages. I spent the late summer of 2023 getting his site ready. Job done. Seemingly, a good job! A very large Fintech firm bought his site, around 8 months later. My friend introduced me to them on a very informal basis. What followed was an interview. That went well. Two example tasks arrived. I completed the tasks over an afternoon. That went well. A second interview with two senior members of staff... yeah, you're getting the gist by now - That went well. Salary expectations? (went well) and a month later; one final video call. "We're very impressed by you. You have the job." So, that went well. 

The job means that I must hang up my boots in a few roles. My usual self employed role will now cease, and that's great because I'd grown tired of that job after 12 years of shoulder breaking work. You may have already read that I'm closing the T-shirt store. I will no longer be accepting diabetes mentees. I will no longer be attending mid-week events or conferences, although I hope The Spice Girls will allow me to have lunch with them from time to time. I'll be reducing my social media time. I will no longer have enough time to create videos, especially the Dad Chats to... interviews. I'm sad about most of those things because they are so fulfilling, yet the changes are necessary to allow for a sensible work-life balance.

Some things will remain! I will continue to be a voice for people who need access to technology and medicine for their diabetes. I will continue to admin' the Men's T1D Support Group. I will always try to amplify the work of Action4Diabetes and, so long as Jerry and Charlie want me, I'll remain a part of the Type 1 Advisory Group. 

Changes aren't always something to be fearful of. Grasp the exciting opportunities when they're presented to you and, as I've mentioned previously, we're only here once. Do good things with good people. 

Of course, the blog will still be updated from time to time!

My Buy Me a Coffee page will soon be updated. From June 30 2024, all coffee donations will be forwarded to Action4Diabetes. 

 

Sunday, September 4, 2022

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!