Tuesday, October 24, 2023

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.

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:






 

No comments:

Post a Comment