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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Combating Stigma in Diabetes Online Content

In today's digital world, the internet has become a significant source of information and support for individuals with chronic conditions such as diabetes. However, despite its many advantages, the online sphere is not immune to the perpetuation of stigma and misinformation surrounding the condition. You may have read a lot about stigma via your social media platforms of late. I apologise if my own content has been focused on that subject. However, I do believe it is a hugely important issue and one which can be addressed within the general population. I understand that to many of you stigma is not the most exciting subject to read about. Indeed, some of you may have never experienced stigmatising content. Stick with me, have a read, it will only take a few minutes.

So, we know that diabetes is a chronic condition that affects millions of people worldwide. It is characterised by the body's inability to properly regulate blood sugar levels. Unfortunately, diabetes is often associated with stereotypes, misconceptions, and blame. Stigma arises from these preconceived notions and societal attitudes, resulting in discrimination, shame, and psychological distress for those living with diabetes.

The internet has revolutionised the way we access and share information. It offers a wealth of resources and online communities, such as #GBDoc, that can be immensely beneficial for individuals with diabetes. However, the online sphere is also a breeding ground for stigma and misinformation. Many platforms lack proper oversight, allowing harmful content to spread unchecked. As a consequence, diabetics often face an uphill battle in navigating the online landscape, leading to increased anxiety, self-stigmatisation, and poor mental health.

Stigmatising content can have severe consequences for individuals with diabetes. It not only perpetuates harmful stereotypes but also hinders our ability to manage the condition effectively. Stigma may discourage individuals from seeking necessary medical care, adhering to treatment plans, or even disclosing their condition to others. Consequently, this can lead to poor glycemic control, increased complications, and a diminished quality of life.

To combat stigma effectively, it is crucial to empower individuals with diabetes through education and awareness. Creating and promoting online content that accurately represents the realities of living with diabetes can play a pivotal role in challenging misconceptions and dispelling stereotypes. At #GBDoc, we recently launched the #StopTheStigma campaign to do precisely that. By providing evidence-based information, sharing personal experiences, and embracing empathy towards others, we can reshape the narrative around diabetes and create a more inclusive online environment.

Online communities such as GBDoc can serve as a lifeline for individuals with diabetes, offering support, validation, and a sense of belonging. These communities should prioritise the creation of safe spaces that are free from stigma and judgement. As a volunteer, I work hard to ensure everybody feels safe to engage in and express themselves in the communities that I am a part of. If you notice or experience otherwise, just let me know.

Healthcare professionals CAN play a crucial role in combating stigma surrounding diabetes. By staying updated on the latest research, guidelines, and treatments, they can provide accurate information to their patients and the general public. Sadly, there are some HCPs with a different agenda. I strongly encourage diabetics of any type to avoid engaging with or acknowledging HCPs who are promoting diets or lifestyles via a subscription based service. There are a few of those guys kicking around, even in the UK!

Additionally, healthcare professionals can actively engage with online communities, offering expert advice, clarifying misconceptions, and addressing concerns. By bridging the gap between medical knowledge and the online sphere, healthcare professionals can become allies in the fight against diabetes stigma.

Despite it being 2023 and despite many words of advice and correction, stigma surrounding diabetes persists in online content today, creating barriers for individuals seeking support and information. However, by recognising the impact of stigma and actively working to combat it, we can create a more inclusive and supportive online environment for individuals with diabetes. Through education, empathy, and the promotion of accurate information, we can break down barriers, empower those affected by diabetes, and contribute to everyone's overall well-being.

I'd like to ask you all to share your experiences of stigma on your social media accounts. If you can, post that content where people could benefit from learning about stigma (where people without diabetes might read it) and use the hashtag #StopTheStigma. Raising awareness has the greatest impact among the unaware.

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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.

If you enjoyed this blog and you'd like to support me over the time that I give to others, my online content, or if you'd like some direct support from me then check out these links:

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Diabetes Abuse

 

Living with diabetes can be a challenging experience, and connecting with others who understand what it’s like can be incredibly beneficial. However, as with any community, there can be issues that arise, including abusive behaviour. Unfortunately, even within the diabetes community, there are people who engage in abusive behaviour towards their fellow diabetics. This can take many forms, from bullying and shaming to outright harassment and intimidation.

It’s important to recognise that abusive behaviour is never acceptable, regardless of who is engaging in it or why. No matter how frustrated or angry someone may be, it is never okay to take that out on another person, especially someone who is dealing with the same struggles that you are. In fact, engaging in abusive behaviour towards other diabetics is particularly harmful because it can undermine the sense of community and support that is so important in managing diabetes.

Here are some of the reasons why it’s essential to not accept abusive behaviour within the diabetes community:

• It undermines the support system

One of the most significant benefits of the diabetes community is the sense of support and understanding that it provides. When you connect with other diabetics, you can share your experiences, exchange advice and tips, and find comfort in the fact that you are not alone. However, when abusive behaviour is present, it can erode that sense of support and understanding.

People who are subjected to abuse may feel isolated and alone, as if they have no one to turn to who will understand what they are going through. This can make it more challenging to manage diabetes, as the support that they would usually rely on is no longer available. It’s essential to create a safe and supportive environment within the diabetes community to ensure that everyone feels comfortable seeking and offering support.

• It can have negative mental health consequences

Abusive behaviour can have a significant impact on mental health. For people with diabetes, who already have to manage the stress and anxiety that comes with living with a chronic condition, this can be especially harmful. Abuse can lead to feelings of shame, guilt, and worthlessness, which can exacerbate existing mental health issues or even lead to the development of new ones.

It’s crucial to prioritise mental health within the diabetes community, and that means not accepting abusive behaviour. People with diabetes need a supportive environment where they can feel safe discussing their struggles and seeking help when they need it. If abusive behaviour is present, it can make people feel even more isolated and alone, which can be detrimental to their mental health.

• It perpetuates harmful stereotypes

Unfortunately, there are still many harmful stereotypes and misconceptions about diabetes. Some people believe that diabetes is a result of poor lifestyle choices, and that people with diabetes are lazy, unmotivated, or lacking in willpower. These stereotypes are not only untrue, but they are also harmful and can contribute to the stigma that people with diabetes face.

When people within the diabetes community engage in abusive behaviour, they are perpetuating these harmful stereotypes. By shaming or bullying other diabetics, they are essentially saying that they believe these stereotypes are true, and that people who struggle with diabetes are somehow to blame for their condition. This can be incredibly damaging, both to the individual who is being targeted and to the community as a whole.

• It creates an unsafe environment

Abusive behaviour can create an unsafe environment within the diabetes community. People who are subjected to abuse may feel uncomfortable attending diabetes-related events or engaging with others in the community. They may feel that they are at risk of being targeted again, and that they have no recourse if that happens.

Creating a safe environment within the diabetes community means ensuring that everyone feels comfortable and supported. No one should feel as though they are at risk of being targeted or harassed. When abusive behaviour is present, it can undermine that sense of safety within the community.

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From The Cradle To The Grave

Have you been reading the shared experiences, maybe offering your own, for Hypo Awareness Week? I have offered up a few things and joined in with a few discussions. It's been heart warming to find solidarity with my peers and learn of the experiences of others. Awareness days, weeks, months or whatever are good things, in my opinion. A little understanding can go a long way for better care in a clinical environment but also at home, work and in a social arena. Keep on sharing and raising awareness of what matters to you.

So, this blog post isn't really about Hypo Awareness Week. The title and photo might have given that away already. It was inspired by the hypo conversations, though. Hypos, a seemingly unavoidable complication of having T1D, rarely spoken of as a "complication", it's frequency - more so for some than others, and the knowledge that your last hypo probably won't be your last ever hypo unless it puts you in the ground. Hypos are probably for life, once you've been diagnosed with T1D, unless technology advances further or £50 million donations find us a cure.

Lots of things are for life, of course; Taxes, corrupt politicians and ITV reality shows to name a few. You'll have your own "for life" baggage, I expect. I certainly do and despite my positive stance over awareness campaigns, I have found this particular one has left me rather melancholy over my own "lifers". 'From the cradle to the grave' refers to my own long term conditions. I almost called this blog "Not a moment" because since my first breath, I have lived with a long term condition. 

Some conditions affect our lives more deeply than others, that could be because of the condition itself or the way we lead our lives or how we're managing the terrible hand that the universe dealt us. My LTCs vary from things that I have no need for support or care over to things such as T1D, where I benefit hugely from good support and care.

My melancholy, my self-pity if you will, will come and go for the rest of my days. It is an infrequent visitor and not something to be concerned about. I feel the storm clouds gathering when I've had a rough period of health or a difficult period in my personal life. In this case, I've had a troublesome couple of weeks with hypos and reduced rest and that's why I've been all very "woe is me" for a day or two. In this time I've been revisiting my "lifers", when they happened, are they related and even considering what might happen in the years to come. Following my last hypo, frustrated, I silently went through my LTC health history:

- Day 1, congenital birth condition

- Year 2, speech condition

- Year 8, diabetes

Then, some breathing space for 25 years. The universe must've been on holiday. Let's crack on...

- Year 33, eye conditions

- Year 37, new eye conditions

- Year 44, shoulder condition

A lot of conditions, hey? and far too much detail to offer in one blog post. Some are related to each other but, because I focus on T1D and anything related to it, I rarely bother to mention anything that's not in the diabetes camp. Oh, sure, they impact on me in many different ways but they don't require any intensive management like T1D does. Oddly, despite the hypos putting me under this dark cloud, T1D is something I feel more "ready for the fight" over. It might be because things could escalate and become very bad with diabetes and the complications that it could bring or it might be the prospect of one day having very little to manage (maybe nothing) in later life when it comes to diabetes. It would be sweet to still be around to experience that.

Reading back through this post, it looks pretty bleak. Sorry, I'm usually a very positive and glass half full person. Life can be incredibly good sometimes! I don't need to think for too long to remember and to count my many blessings. Life is also very short and I firmly believe in enjoying myself as much as I can until I head off into the sunset, leaving behind a trail of horrified nurses. I encourage you to do the same (maybe not the nurses) when you can because, diabetes or not, it turns out you only get to do it once.

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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