I Was Feeling Complicated...

...I was feeling low. Annie Lennox is bloody brilliant, isn't she? The song is Thorn In My Side by Eurythmics, and you'll probably be unaware of it if you're under 35. Put it on your Spotify while you read this post.

This post is about diabetes related complications. If the subject is too difficult for you, then please come back again for another post in the future. Normally, I wouldn't bother to put a trigger warning like that because I'm a "warts and all" diabetes blogger. However, I understand that the subject can be upsetting for people who live with diabetes and their loved ones because it is so utterly dreadful. So, if you're still here, let's begin.

The story of my own diabetes related complications has been well documented in this blog and across my social media accounts. If you're unaware, and in short, I suffered severe eye complications from around 2010 - 2012. I had several surgeries and I spent a good deal of those two years living in near blindness. Things improved and although I am "registered as blind" I am far from it. The reality is I have a visual impairment that does impact my day to day living... actually day to night living, my night vision is shocking, and I need to wear specs to read and write incredible blog posts such as this one.

As I head rapidly towards 40 years with T1D, I count myself lucky to only have had that experience of complications. Oh, if I could change history and not go through that then I absolutely would! I count myself lucky because I know many others who have been through more, much more, much worse and they keep on fighting with lots more day to day (or night) issues than I have. Also, as I've aged (matured?) with my eye complications and embraced the lived experience of others with T1D, I have come to realise something:

I was wrong.

An admission of being incorrect is a tough one to express. It's rare to read of anybody back-tracking and changing a firmly held view. I don't know why, as human beings, we're so proud about always being right. I mean, just by pure chance, sometimes you'll be wrong... right? Anyway! Why was I wrong? Well, for several years and up until very recently I've harboured a feeling of self-blame for my eye complications. I may have even written about it a few years ago, but then I never touched on the subject again. Pride? Over time, and with more experience, I've come to realise that I've been wrong to shoulder the blame for what I went through.

I'm not going to shift the blame for my complications to another person. Why it happened, is down to one thing; Type 1 Diabetes. After that, the reasons don't really matter. History cannot be changed. Yet, for a long time I put the blame on myself, the missed appointments, literally running out of an appointment for laser surgery, hiding away and pretending it wasn't happening. 

To run away from you

Was all that I could do

Annie was probably referring to an ex-lover. For me, to run away from those scary appointments felt like my only option, the easy option, and I was an adult. Nobody was forcing me to attend. Indeed, nobody would chase up missed appointments or why I'd scarpered part-way through laser surgery. Why would they? DNA (Did Not Attend) is a common thing in the NHS and the reasons for that can be complex rather than simply the patient just doesn't care about themselves. If the patient doesn't care about themselves, surely they are in the greatest need of the soonest care? A discussion or a blog post for another time, perhaps.

I should've known better

But I got what I deserved

Was exactly my thoughts for many years. I was told by enough healthcare professionals. Yet, "told" is something we experience a lot when attending our diabetes reviews.

"You need to get your A1c down"

"You need to have less hypos"

"You need to check your blood glucose more often"

The list is long and, if you have T1D, you've probably got your own extensive list of "tolds". 

Modern care has come to realise that the harsh approach, the scaremongering, doesn't work very well on the whole. I agree. It clearly didn't work for me having been subjected to scaremongering from an early age. Perhaps if all of my diabetes history was analysed, those early years were the seeds planted for my mid-life complications harvest. Who knows? Again, I'm not shifting blame for my complications to another person or persons. Diabetes got me here, my own immune system did the dirty work. What followed was a war and in every war there is suffering - my left retina took the brunt.

Complications are indeed a thorn in my side, today. Hopefully, they won't be for you. If you do get some bad news, I have some words for you:

It's not your fault. Don't put yourself through what I have for a decade.

Complications treatments are as good as they've ever been.

Be brave. You're only here once and you matter.

Things will get better or settle down. 

Seek support. The NHS might offer it to you - take it! 

Talk and share. The huge #GBDoc community has more experience than any clinic. We got you.

This post was tougher to write than I expected. Thanks for giving me a few minutes of your time.

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The Darkest Hour

Mental Health Awareness week is coming to an end and, for the first time really, I've been quite active about raising awareness of mental health issues on social media. During the last week, I have read about the issues faced by others within the diabetes community. I have also had several conversations with fellow diabetics about their mental health and shared my own thoughts in turn.

During a couple of conversations, diabetes related complications became the subject. It seems very reasonable to be fearful or anxious about complications, whether you've experienced them personally already or you've simply heard about them - yet managed to stay complications free. These particular conversations were on a mentor to mentee basis (I help to mentor a handful of people living with T1D) and so it wasn't appropriate for me to use that time to fully open up about my experiences. Some of my mentees pay for my time and it's important to focus on their issues, rather than drift off into my experiences. However, as we touched on some aspects of mental health in relation to diabetes complications the memories came flooding back.

Before we tuck into the main course of this blog post, I'm going to put a trigger warning here. Below, I will be writing about diabetes related complications, depression, and suicide. So, if you're upset by those subjects or they trigger you in a negative way, then please close this window and drop by again later for another blog post. Thank you.

Type 1 Diabetes had never really impacted upon my mental health. I'd had the condition for around a quarter of a century, from childhood until my early 30s, and although it was a massive annoyance and it nearly killed me a couple of times it wasn't affecting my life much. I'd been married, had two children, I was working for a TV channel in London, drove a fancy car, and I was flying around Europe to play poker tournaments. Much more was going on at that time, too! Needless to say, I was enjoying life and I didn't have much time for diabetes. My autobiography will tell you about that time.

Diabetes got angry at my ignoring of it. It'll do that, it's very needy. As my vision began to change, as little black dots appeared, as things became more and more blurry, I knew that I couldn't keep my head in the sand forever. I'd already been diagnosed with retinopathy at that stage. If you've read my previous blog posts on the subject, you'll know the story from then on. 

What I haven't ever spoken about is the affect that this period had on my mental health. Sure, I've joked that it was "a pretty dark time" but that's about it. The truth is that it was a terrible time. Once the initial feelings of anger, self-pity and guilt had subsided, I felt an overwhelming sense of hopelessness and that didn't disappear very quickly at all. It took many operations and around 18 month - 2 years of my life until I found some hope again. 

The title of this blog is The Darkest Hour. When I think of this time, many hours were dark (stop with the puns!) yet there was one particular time when I had firm plans to end my life. I am sorry to my friends and loved ones if reading that upsets you. The time frame is a little hazy, but it was around a year into my life as a very, very, visually impaired person (almost entirely blind). I'd had several operations on one eye with very limited success and no "work" had taken place on the other one at that stage. I considered what the future held for me, what had been, what I'm currently missing. A spiral of depression began and I became comfortable in planning my demise. So much so that I told a trusted person of how long I'd be waiting before calling it a day. That time was approx' a month after my next operation. I figured I'd give some time for things to settle down after the op, talk to my surgeon about what could be done from then on, and if the situation was to stay the same then I'd go through with my plan. 

Losing my sight was devastating, but it was also the fact that it was happening to me in my 30s. I imagined what might happen in my 40s, 50s and beyond. I had no intention of slowly decaying and putting my family under the stress of witnessing that and caring for me. I won't be writing about my plans to die in any detail in this blog post or anywhere else. I'm absolutely not here to put plans into heads.

I'm still here, in my 40s, so you already know that things changed for me. I remember that day as clearly (pun?) as any in my life. After getting the thumbs up from my surgeon, I could look my children in their faces and see their eyes and their smile. Everything changed. Oh sure, I've made monumental balls ups of many things since that day in 2012, but I've become more appreciative of life, more understanding of the desperation felt by others when life becomes intolerable, more respectful of diabetes and more engaged about my own health.

So, here's a thing; I was wrong. Wrong to make plans to end things, but in hindsight I understand why I was in that position. What I needed was support to help me deal with the devastating news and the long period of time as a severely visually impaired person. What I got was a meeting with a blind persons charity, in the eye clinic waiting room, surrounded by many other patients. That was followed up with a home visit to ask what I needed in a practical sense for living at home. I was given a talking blood glucose meter. Cool, thanks. No psychological support was offered.

I feel very lucky. The brilliance of my surgeon saved my sight and, in the process, my life.

I've been wondering how to end this blog post without sounding patronising and without doing the "My DMs are open, message me if you want to talk" virtue signalling nonsense. How about this:

If you're in a bad place with your mental health, diabetes related or otherwise, hold on. Life is long and sometimes things can take what seems like ages to change. You may feel that change is impossible, even if change means you must adjust to new circumstances, but it will happen and you can adjust. Seek the right help to support you. You'll need professional organisations and possibly psychological help. Be honest with your family and trusted friends.

You might also benefit from just talking. There is no shame in feeling depressed, anxious or even suicidal and when it comes to diabetes, we got you. I got you.

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It's Complicated

 

A lot of subjects revolve around Type 1 Diabetes. Many of those are routinely spoken about at your clinic appointments, with your peers, on social media, etc. That's a great thing! Reading about some diabetes related subjects might help you with your own management or, if you decide to verbalise your own experiences, you could be helping others. It's a win-win situation as far as I am concerned. 

I know some will have issues in reading or hearing about the scary aspects of diabetes. I spent a good part of my life avoiding those subjects at all costs. Even when one of the most scary, diabetes related complications, came to visit me personally I decided the best course of action was to put my head in the sand. That was a poor choice, of course.

Living with type 1 diabetes can be challenging, and there are several potential complications that can arise as a result of the condition. I believe that it's important to talk about these complications openly and honestly, without blaming or shaming people with diabetes. Stigmatising language and attitudes can be harmful and can make it more difficult for people with diabetes to manage their condition.

Let's take a look at some of the most common complications associated with type 1 diabetes:

- Diabetic ketoacidosis (DKA): DKA occurs when the body starts breaking down fat for energy instead of glucose, leading to a buildup of acids called ketones in the blood. This can be a life-threatening condition if left untreated.

- Hypoglycemia: Hypoglycemia, or low blood sugar, can occur when a person with diabetes takes too much insulin or skips a meal. Symptoms can include shakiness, dizziness, confusion, and even seizures. We talk about hypos within the diabetes community quite often yet, still, some find the subject embarrassing.

- Neuropathy: Over time, high blood sugar levels can damage the nerves in the body, leading to numbness, tingling, and pain in the hands and feet.

- Retinopathy: High blood sugar levels can also damage the blood vessels in the retina, leading to vision problems and even blindness. I know this particular one very well. 

- Nephropathy: Diabetes can also damage the kidneys, leading to a condition called nephropathy. This can progress to kidney failure, which may require dialysis or a kidney transplant.

It's important to note that not everyone with type 1 diabetes will experience these complications, and managing blood sugar levels can help reduce the risk. However, even with the best management, complications can still occur. That's why it's essential to have open and honest conversations about these potential complications and provide support to those who are managing the condition.

Unfortunately, people with type 1 diabetes often face stigma and blame for their condition, which can make it even more challenging to manage. Some people may assume that diabetes is caused by poor lifestyle choices, such as eating too much sugar or not exercising enough. However, this is not the case with type 1 diabetes, which is an autoimmune condition that cannot be prevented or cured.

Stigmatising language and attitudes can make people with type 1 diabetes feel ashamed or embarrassed about their condition, which can prevent them from seeking the help they need. It's important to talk about type 1 diabetes in a way that is respectful and understanding, and to avoid placing blame or shame on people who are managing the condition. 

There is often much talk between diabetics about the language used about our condition. Even the use of the word "diabetic" causes some to feel uncomfortable, much as the clumsy "PWD" does. I've repeated this many times previously; We're all very different. The use of some words and phrases doesn't cause me any upset and I believe that to be commonplace among other diabetics. 

What does cause me upset is the stigma surrounding complications. And not just because I've lived through several different eye problems. Indeed, I haven't felt stigmatised in any way for my diabetes related complications, but I know that others have and I know that many others fear talking about their own complications due to the reactions of others. That needs to stop. 

Through my own engagement with the online diabetes communities, I've learned much about my T1D. I've improved my diabetes management and probably given myself a much better long term outcome. If we open the door to discussing complications, normalise the subject, provide support through communities and peers as well as directly in clinic, then I firmly believe we can lessen the severity of complications in many. Why? because fewer will think twice before asking a question online, fewer will be worried about approaching their doctor for advice, the early stages of complications can be picked up on and stopped or slowed down before they become severe.

So, if you've got complications concerns, a question, experiences to share, etc then hit your socials. There are many who will support you and benefit from your engagement. If you experience negativity, use your mute or block buttons. 

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Type 1 Diabetes and Sight Loss

 

I am often asked about my sight loss in relation to my T1D. How it came about, how I adjusted, acceptance and advice are often subjects of conversation and I'm very happy to discuss. Complications are a thing for some T1Ds and we shouldn't avoid the subject. Here's a little about my diabetic retinopathy without too many gory details. 

As a person living with type 1 diabetes and sight loss, my journey has been filled with challenges and triumphs. I was diagnosed with type 1 diabetes at the age of 8 and experienced some eye complications due to high blood sugar levels at age 31. Eventually, my eyesight started to deteriorate, and I was diagnosed with diabetic retinopathy.

The diagnosis was devastating for me. Losing my sight meant losing a part of myself, and I had to come to terms with the fact that my life would never be the same. I had to learn new ways of doing things, like cooking, cleaning, and getting around. It was difficult, but with the support of my family and healthcare team, I learned to adapt. I haven't lost all of my eyesight, but enough to be registered as blind. That feels like a very strange thing to type because I'm not blind. If you've met me, you've probably noticed that I can get around pretty well. Indeed, my sight is as good today as it's ever been since my retinopathy diagnosis. I prefer "visually impaired" when describing my sight loss as that's more accurate. Although, some hear visually impaired and automatically assume totally blind - for me that's far from correct. 

One of the biggest challenges I faced was managing my diabetes and my vision loss. I had to learn how to measure my insulin doses, check my blood sugar, and administer my insulin injections without relying on my sight. It was a lot of trial and error, but I eventually found a routine that worked for me.

Living with sight loss and type 1 diabetes has also taught me the importance of self-care. I've had to make my health a priority and take care of my body in ways that I may not have otherwise. I make sure to exercise regularly, eat a varied diet, and keep up with my doctor's appointments to prevent any further complications.

Despite the challenges, my journey has also been filled with triumphs. I've been able to pursue my passions, like diabetes advocacy, writing and public speaking, and inspire others living with sight loss and diabetes. I've learned to appreciate the little things in life, like the sound of birds chirping or the feeling of a warm cup of coffee in my hand.

Living with sight loss and type 1 diabetes is not easy, but it has taught me resilience and strength. It has taught me to never give up and to always find a way to overcome obstacles. I hope that my story can inspire others living with these conditions to keep fighting and to never lose hope. If you get a diabetes related eye complication then it's alright to be fearful, angry, upset and even depressed. Nobody wants that news, but know this; most eye complications can be easily treated and needn't be as severe as mine if you attend your appointments and follow the advice you're given. 

I have written other blogs on this subject with more detail regarding surgeries and treatments. Take a look through my posts and have a read if you're interested in that. 

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Charles Bonnet Syndrome

What is Charles Bonnet Syndrome? and why the photo of Abraham Lincoln? I'm glad that you asked! because that's what today's blog post is about.

I've been talking about eyes and complications on various platforms, lately, following the stopping of my long term eye medications. You might already know the deal with me; eye complications from T1D, surgeries, pressure, yadda yadda. You might have read or heard me talking about scotomas, too. However, I've rarely spoken about my experiences of Charles Bonnet Syndrome.

Who on earth is Charles Bonnet? A pretty interesting fellow, by all accounts. You could do some Googling to find out because I'm more interested in the syndrome than the person. Wikipedia says this about the man and the syndrome:

"In 1760 he described a condition now called Charles Bonnet Syndrome,^[7] in which vivid, complex visual hallucinations (fictive visual percepts) occur in psychologically normal people. (He documented it in his 87-year-old grandfather,^[8] who was nearly blind from cataracts in both eyes but perceived men, women, birds, carriages, buildings, tapestries and scaffolding patterns.) Most people affected are elderly with visual impairments, however the phenomenon does not occur only in the elderly or in those with visual impairments; it can also be caused by damage elsewhere in their optic pathway or brain."

Hallucinations?! Yikes! It sounds pretty scary and, to begin with at least, it was. Let's rewind a decade, I'd recently had my first eye surgery and things hadn't improved. My ever decreasing vision was still very poor and I'd resigned myself to a long period, maybe life, of very limited eyesight. It was a dark period for me both mentally and physically. One morning, I woke to find, to my utter bewilderment, Abraham Lincoln walking by the foot of my bed. He looked directly at me and then sort of melted away into the wall. Strange, I thought, I don't remember taking LSD last night. At the same time, I was paralysed by fear. I remember staying in bed for at least 20 minutes trying to piece together what had just happened. Was I really awake? 

The experience dominated my thoughts through the rest of the day. I had convinced myself that I was somehow half the way between waking and sleeping, that my lost eye sight had tricked my brain into being asleep and desperately trying to not worry about dementia or "going mad".

Some time went by, maybe a week or so, before it happened again. No visits from Lincoln, though. That's far too wacky! This time a far more realistic smile from Queen Victoria before she turned her head and vanished. That sparked a bunch of hallucinations which ranged from various Victorian age dressed people to my best friend sitting on my toilet, cheerfully exclaiming "Hello mate!" and disappearing - Although I couldn't hear him say it, it was simply "mouthed" at me.

By now, as you might imagine, I was getting a little worried for my sanity. Weirdly, I had stopped becoming frightened of the hallucinations and felt disappointed when they vanished. Perhaps seeing something clearly again was the reason for the "feel good" and my brain was releasing some kind of chemical.

Of course, I was unaware that I was experiencing Charles Bonnet Syndrome. It took a visit from a charity worker to explain that what I was going through was completely normal. He even asked the question "Old fashioned things?". I laughed out of relief and started to look forward to my next round of visits from a different century. Sadly, they never returned. It was as if my brain had worked it out and decided I no longer needed to be fed these images. Soon after that, more surgeries and the slow recovery of my sight began. 

Head to the NHS website to read more about this syndrome and the hallucinations in detail. However, they're not dangerous, they are common for anybody of any age following sight loss, they do stop.

As always, I encourage everybody who has diabetes to attend their eye screening appointments. Please go to any follow ups and have any treatments offered to you. 

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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Was It The Cinnamon?!

 I've recently fallen into a YouTube "rabbit hole". Having watched someone survive on £1 for an entire day, the same chap then went on to describe his favourite "cheap" meals. One of those meals was a fried banana sandwich - made from bread which he baked himself. It looked pretty good and, because I'm not surviving on £1 per day, I added some sugar and cinnamon to my own fried banana sandwich. It was really good! The cinnamon really brought it to life and I've made the same sandwich several times, since.

Cinnamon! Ah, yes the frequently touted and often mocked cure for diabetes! Of course, it won't cure your diabetes and that's why it's often mocked but it does taste pretty good on various things. Strange, though, that after recently eating a lot more cinnamon (I really like a fried banana sandwich) I've finally been able to stop taking medication which I've been on for around 10 years.

I've had to take eye drops since developing retinopathy and various other eye nasties in 2010. The drops have changed, based on my changing condition, a couple of times. The latest batch began in 2014 and they were prescribed to control pressure and irritation. Very successful they were, too! After my 2014 surgery, I have been stable in the peepers. I thought that was down to a combination of better T1D management and my 2 x 2 eye drops per day. I might be right in regards to the T1D management but it seems that things have changed in the eyes dept.

Earlier this year, my eye surgeon suggested that I should stop taking the drops to "see if anything changes". I did that for around a week in the summer only to find my appointment had been rescheduled. Frustrating! But, during that week, I never noticed any real discomfort in my eye. Encouraged, I tried again before the latest appointment in the world's hottest clinic. 

If you've ever had ocular hypertension then you'll probably know the pain. Just like blood glucose levels, eyes have pressure levels that are given values. A normal value is in the teens, give or take a point or two. In 2014, my eye pressure was 44. I was immediately put on a drip to drop the pressure. I've suffered many pains in my life but eye pressure pain is by far the worst thing that I've ever felt. It lasted for 24 hours before I was able to get the drip into my hand and find relief. 24 hours of agony feels like a very long time, i wouldn't wish that pain on anybody. So, to be asked to stop the eye drops which help to control pressure was certainly a worry.

It's been over two weeks since I stopped the drops, 10 days since leaving the sauna ward, and all is stable in that eye. I don't know if I'll ever need to go back to the drops or if that's the end but I'm delighted. To just wake each day and do the T1D thing without reaching for two bottles and a tissue as well, to go to bed without fumbling around, late at night, for the same... it's less work! and it's less burden. This felt like life in 2009! only with better T1D management and no midlife crisis. 

Was it the cinnamon, though?!  

No. Let's not be silly. I've likely needed to stop the drops for a while. I have stability in both eyes and despite my visual impairment I consider myself to be very lucky and happy with my lot. Blessings counted.

To end this little blog post, I'd like to encourage you to always attend your eye screening appointments and any follow up appointments and to go for any treatments that you might need. I don't want any of you to go through the pain and darkness (physically and mentally) that I went through. If you do attend your appointments then you can reduce the chances of anything nasty happening to your eyes. Some of you will already be living with visual impairments and going through your own personal battles. Please don't ever give up on medical science, new treatments and new technologies. Ask about them, ask FOR them! and share your story without fear. There is no shame in having diabetes related eye complications.

Try the fried banana sandwich, too! :

- 2 slices of white bread, remove crusts

- 1 small sliced banana

- Some sugar (brown works best) and some ground cinnamon

Heat a tablespoon of butter in a pan, place the bread in the pan, add the banana to one slice while the bread browns and sprinkle your cinnamon and sugar on the banana. Flip the banana-less slice of bread on the top and flatten with a spatula. Turn a few times to brown evenly and sprinkle a little more sugar on each side.

You'll need insulin.  

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. 

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Fear

 The difficulties of T1D have been chewed over and over for years. New difficulties appear, from time to time, as people become comfortable or brave enough to start talking about them openly. I think we've seen that, recently with eating disorders and the mental health impacts on individuals living with Type 1 Diabetes. 

That's good, right? If we talk and share experiences then others don't feel alone, HCPs take notice, treatments and referrals can happen, we can get better or maintain health. I've always been a sharer in regards to my diabetes and, if you know me well enough you know that I encourage others to talk as openly as they care to.

It's not easy to share. At some point you'll probably be on the receiving end of negativity. Eventually, somebody will likely tell you that you are "attention seeking" or "showing off". That may be true. Social media is a place for seeking attention for engagement and I'm certainly guilty of showing off... I'm a sharer, remember? but for the right reasons. You may also be on the receiving end of self doubt. Did you share too much? Eek! Perhaps it's time for a social media break or to even abandon your accounts entirely and become a lurker, a reader, no longer sharing because it's safer that way. That happens. It's a shame when it does but it's also understandable. The Internet can be a vicious place, a scary place. #DOC is not an exception.

Social media fear is certainly a thing. I know I've written many tweets and decided against sending them. Sometimes I light fires on Twitter but I really do prefer the peace. Honestly, I do!

Fear plays a huge role in living with diabetes. I've read countless tweets from people who are frightened of what's happening to them and what might happen to them. The eye clinic, the lasers, the blood tests, are my kidneys okay? why have I got pins and needles in my foot? That chest pain.... Perhaps some of those are familiar to you. And your reaction? Fear.

Fear of complications and fear of dying seems natural. After 36 years T1D and a good taste of eye complications, I still "feel the fear". I don't think about things each day but, from time to time I get that moment where everything stops and my brain is entirely focused on what I have. Then it's gone. That briefest moment containing all the fear, all the self pity, all the anger and sadness. It might only be a split second! It feels like I've swallowed an anvil. Then it's gone.

What's the solution? 

I suspect the answer is in acceptance and to expedite acceptance probably means therapy, if not for all then for many. 

Right now, I don't think therapy would serve much purpose for me. I do, however think the newly diagnosed should be seeing a therapist as routinely as a dietician, perhaps even more frequently. And for as long as it takes. 

I reached the stage of acceptance a long time ago. Fear still crippled me when eye complications appeared on the horizon. My head went into the sand and instead of facing up to some uncomfortable weeks and months and coming out relatively unscathed, I hid away and my reward was a lifetime of visual impairment after two years of surgeries and pain. 

Would the news of eye complications and an offer of therapy have helped me? Possibly. I may have faced the fear of lasers and injections instead of pretending it wasn't happening. 

Could it help others? Possibly.

Is it time for newly diagnosed diabetics and people diagnosed with complications from diabetes to be offered immediate, on site, therapy as a matter of urgency and total normality?

You tell me! The comments box is below.