Showing posts with label sight loss. Show all posts
Showing posts with label sight loss. Show all posts

Sunday, May 21, 2023

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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Tuesday, March 21, 2023

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:

Friday, June 11, 2021

It's Good To Talk

 


I have a new-found admiration and I'll get to that in a moment. Firstly, some context;  I've hosted podcasts, created several vlogs, spoken on the radio, quite a few people appear to follow me on social media, too. In a different life, I played poker on TV and once upon-a-time I played in the World Series of Poker, the biggest card game in the world. You might say I've been around in various guises when it comes to being in the public eye in the last 15 years. I must be brimming with confidence, right? You might read my tweets and my online persona comes across to you as a confident, sometimes outspoken, funny, charming and rather good looking, humble, young man. Some of those things are true! The real truth is that I'm a quiet person. I suffer from social anxiety. I use the word "suffer" deliberately because, unlike Diabetes - which I have, there have been times when it has been on a different level of troublesome.

There are reasons for my social anxiety which go way back. That is for another blog, perhaps! It'll likely be too long to be interesting. I'm not going to offer advice or suggestions on how to "get over it" either. That's for you to work out, if you're relating, sorry. What I can offer is my own experience.

Life has a way of moulding us, directing us, forcing us into situations. Sometimes it takes trauma, grief in it's many forms, exquisite joy or an event to really open our eyes to important things and exciting opportunities. Perhaps the Covid-19 pandemic, the lockdowns and well documented horror have given you a new perspective. Perhaps you're doing new things already and appreciating the people and things around you more than before. Maybe you promised yourself to be that way but it hasn't worked out. That's alright. Lots of us promise to live a new, healthy life on Jan 1st each year. I'm not sure how many of us live up to those quietly spoken words which we weren't truly believing in anyway.

You might have read about my Diabetes complications, before. Sight loss and the dark (no pun intended) places that it lead me to, followed by recovery and a new-found "Wow!" for the world. Then, I told myself that I would do new things. I did. I built a business and probably over-enjoyed myself in many other ways (again, stories for another time). My 40th birthday had a similar but "purer" affect on my views. I decided to open up about my Type 1 Diabetes, expecting nothing more than some minimal engagement on my very early and terrible vlogs. 4 years later, it was one of the best decisions of my life. It's good to talk!

The new-found admiration? It's for those taking a leap of faith by speaking in public for the first time. I've spoken at business meetings and haven't really felt uneasy. Those meetings are often boring and a matter of fact, information sharing, exercise. Speaking publicly about something personal such as your health is pretty terrifying! but... fun! Terrifunning? Like a rollercoaster! but a rollercoaster which you control. That's because you're the one who truly knows everything about that subject. I did that a few days ago at a grand old hotel in Stratford-upon-Avon. A private engagement with some lovely people who were extraordinarily kind to applaud me and ask many really great questions. Although that subject was about the CGM which I use, rather than me, I still felt comfortable after a few seconds. After I left that rollercoaster, I wanted to get back on. The fear had gone and the excitement of the occasion came through. Also, I felt I'd lived up to my own promise of doing a new thing which I once would never have even considered. It's good to talk!

I realise that I'm lucky to be given opportunities within Diabetes. I am after all a "Joe Bloggs" (blogs?) Diabetic. I won't be running any marathons or climbing any mountains, you won't catch me trout-pouting in a bikini on Instagram, I'm unlikely to star in any Super Bowl ads or have my hilarious jokes recognised by TV bosses. I don't create drama for content, either. I'm no false advocate who has unsavoury motives. I'm just a person who talks about Diabetes with his peers. Perhaps you are too? I imagine we get along famously already. It's good to talk! 

Social anxiety feels real. That demon is frightening but I'm beginning to realise that he's not real. He is an imaginary monster under the bed, who goes away when you're brave and you look under there. That bravery takes a lot, it can take a long time or it can be triggered by an event. If the opportunity presents itself then I strongly encourage you to go for it and look under the bed and never look back. Do the scary things.

If you'd like me to do something scary then get in touch - daddiabetic@gmail.com Bungee jumpers and sky divers need not apply!

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!