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. 

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Friday, March 10, 2023

The Importance of Diabetes Community


It has been around six years since I took a deep breath and pressed the record button on the video app of my phone. I blundered through an introduction video, deleted it, wrote a script, blundered through that and deleted it. Eventually, I decided on something that was a few minutes long and sent it to my YouTube channel. Of course, nothing happened. It did get a few views! Really... just a few, but that was enough to inspire me to make more and seek out others who live with Type 1 Diabetes. I'm so very glad that I did.

The last six years have been eye opening, jaw dropping, heart wrenching, gut churning, annoying and, most importantly, absolutely wonderful. The good, the bad and the ugly have all visited my social media accounts. The vast majority of the visits have been good and that's why I'm writing this new blog post. The good has had such a profound effect upon my diabetes, my outlook, my social life and my confidence. The good comes in the form of community.

I think it's only fair that I start with GBDoc. You probably knew that was coming! But, what a remarkable community of people and such longevity! GBDoc has been around for far longer than I have in diabetes social media, over a decade apparently. It has had many guises, many volunteers, a few leaders, thousands of members, several platforms, a website, controversy, love, hate and friendship. Sometimes, it feels like Eastenders with boluses - only the acting is better and the story lines are more interesting. Drama aside, the support and information from GBDoc has been incredible. I wonder where I might be in my T1D journey without this community? Where might you be? I suspect much worse off, maybe less knowledgeable, struggling for tech access, more isolated...

...GBDoc isn't the only diabetes community. Different countries have their own communities and that makes perfect sense as healthcare, access to meds and tech, societal differences, etc can differ hugely between nations. Some communities try to cover a global "scene" and that's cool too. From other people, other countries, other values, other uses of language, we can learn a great deal alongside (for me at least) helping to recognise privilege.

Communities are very fluid places. As time passes, people come and go perhaps because they have gained the help and information they need, perhaps they didn't get what they expected, maybe they died! Many reasons can cause the disappearance of an individual from an online community just as many reasons can bring about new faces. 

In my six years of community engagement I have gained so many friends - I really couldn't list them all without forgetting a few. Some have been friends for almost the entire six years and I hope they remain so for the rest of our days. Some have drifted away, a few decided to not be friends at all after a while. That seems like very normal human behaviour and I'm quite accepting of it. Community makes friendship easier to develop and blossom. If you're feeling isolated and lonely with your diabetes then the community could be the answer.

 Away from being bestie mates with lots of new people, your diabetes could benefit hugely from community engagement. Hybrid Closed Loop (not an artificial pancreas) looks likely to be a hot topic for the years ahead in the UK. Yet, most diabetics are not using that technology right now. That means a lot of learning and understanding is on the horizon for people who may want to try HCL (criteria dependant, naturally). The same was true of Libre, CGMs, Smart Pens and Insulin Pumps - less complex than HCL, perhaps, but the usage experiences of peers have proved invaluable to many.

So, you've got new friends and new tech. Now what? Maybe you struggle with the mental burden of having diabetes? Maybe you've heard of talking therapy? That's exactly what a community can offer. Put your grown up pants on and start talking, tweeting, posting, whatever! You'll be surprised at who understands your issues and reaches out to offer an ear. And it helps! To not feel alone in your struggles can ease your burden even if no immediate solution is found. What is the old saying about a problem shared is a problem halved?

Do you need more? Well, community doesn't always mean serious. I've had some hugely fun days out with my friends from GBDoc, we play quizzes, fantasy football and cruel but funny practical jokes on each other! Other skills are shared via a Stitch Club. Books are read at the same time, films and TV shows via watch-a-longs, hobbies and interests shared and enhanced because of new diabetic friends who just enjoy the same things. Maybe you enjoy gaming? gotcha! Art? gotcha! The list of interests is huge and you'll likely find someone who enjoys the things that you do with no relevance to diabetes apart from being in the wonky pancreas gang.

By the way, serious can also be lovely. Some friendships have developed into more and dating, even marriage, has happened. 

If life dealt you a bad hand with diabetes, you can still win the pot if you play your cards right. I'm turning into Bruce Forsyth. Good blog, good blog. 

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