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.

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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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. 

If you enjoyed this blog and you'd like to support me over the time that I give to others then check out these links:

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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. 

If you enjoyed this blog and you'd like to support me over the time that I give to others then check out these links:

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