It's me, Laura Marie: retinopathy

Thursday, 9 June 2016

Seeing Beyond Diabetic Retinopathy

According to Time hop, five years ago today was a very important moment in my life, although at that time I couldn’t see past the fear and uncertainty I was facing. I had come to a dead end and I couldn’t see my future ahead of me...

Continue reading my column at The Diabetes Times.

Laura/Ninjabetic x

Diabetes – My Beautiful Disaster

There is no knowing when you hear those words spoken,

“Your body, we can’t repair, you will remain broken.”

What this would touch was a mystery to me,

They said it may disable or kill… we shall see.

The years, they slipped by and yet there was nothing,

The admissions, the warnings, they must have been bluffing.

I’m invincible you see, with a layer so strong,

You can tear it down, but I will build it up, though I know that it’s wrong.

“She won’t accept or apply or attend” they said,

“This girl, she’s too stubborn and full of neglect.”

But what clouded my thoughts were those words once spoken,

“Your body, we can’t repair, you will remain broken.”

More years, more admissions, more avoiding the concern,

Then one day it hit, it was time for my turn.

“You’ll be blind within the year” they said, as I lay on a table,

Their masked faces above me, poised with tools, I was unstable.

I drifted away, sleeping soundly as they worked,

Waking to the pain, and a weak voice that once lurked.

“You need to control this, you need to get better,”

“Don’t hold yourself back, it’s now or never.”

Alongside that voice was another much stronger,

“Don’t let them control you, you’ll be free no longer”.

Remember those words that were once spoken,

“Your body, we can’t repair, you will remain broken.”

Why try, why fight, why bring myself pain,
This life thrust upon me, I had nothing to gain.
They said it themselves, there was nothing to give
The fight it would take, would it help me to live.

The months, they passed by, I was reluctant at first,

It’s not fair, why me, why had I been cursed.

I resented my body, my thoughts and my actions,

But I needed to fight, face my fears, escape distractions.

The years they passed by, no blindness in sight,

Had I won a small battle, had I lead the fight.

The fear resides inside me, the tales spoke the truth,

I wish I’d acted sooner, before exhausting my youth.

I took a stormy journey, filled with disappointment and blows,

But on the other side of this disaster is a beauty that grows.

And so, to those words that were once spoken,

It’s my body, it’s my fight and your words… they can be broken.

Ninjabetic x

D-eye-abetes

A few months ago, at the end of a blog, I said that I had some good news. I was hoping to write about it (and celebrate it) much sooner but sadly almost 4 months passed before I had my news confirmed in writing.

In 2012 a consultant from my local eye department said these words to me; "You have stage four diabetic retinopathy. It's very likely that you'll lose your sight within the next 12 months."

I was beyond devastated. I was so scared that I couldn't reply or ask him any questions. I couldn't absorb the diagnosis I'd been given or make sense of it in my mind. The consultant didn't seem to understand the impact if his words, spoken in a small cubical with only a with a brightly coloured curtain separating us from other patients. He asked me to sign a consent form and then left me sitting alone to prepare for an hour long session of laser treatment on my eyes. That was the first time we met... I didn't even know his name.

In the months after this diagnosis I began to turn my diabetes around. Yes, this diagnosis was ultimately due to me neglecting my diabetes. I'd been warned of the complications that could occur if I didn't take care of myself, but I hadn't believed they would happen. I'd managed to slip through the NHS system roughly a year after my diagnosis and up until 2012 this had suited me just fine. I had no interest in attending diabetes appointments, they were incredibly generic and I felt that I was nothing more than a box that needed ticking twice a year.

But I was in trouble. Serious trouble that I couldn't turn around on my own. I refused to accept that I would lose my sight... I refused to accept that it was too late for me. The moment the consultant had spoken those words I truly began to appreciate what I had always taken for granted - my sight. I knew that I needed to fight incredibly hard to ensure I could beat this diagnosis, and that's what I did. My vision took a turn for the worst soon after the diagnosis, it was a period of time that took a lot of getting used to. I had to leave my job, temporarily, as I couldn't see my computer screen well enough. I couldn't drive, couldn't watch TV, and couldn’t leave the house without having someone with me. I lost a lot of my independence.

It's true what they say... You don't know what you have until it's gone. The amount of treatment I'd been having for my eyes was certainly taking its toll on my vision but I knew that ultimately it was the best chance I had to stop them from deteriorating. Bright lights and dark rooms took a very long time for my eyes to adjust to, but after I'd had a lot of laser treatment, injections and operations, things started to turn around.

Over the past few years I've been having constant checks and tests to make sure I was on track and that my retinopathy wasn't progressing. I was aware that the stage I was at couldn't be reversed, but I could slow or stop it. I tried to form a link between my diabetes team and my eye team - I needed the communication between them to be strong but it didn't seem to form. This meant that I was passing on messages between the two which, at the time, caused unnecessary stress. Tightening up my blood glucose control had caused more problems with my eyes (something I hadn't been warned about by either team) but in the long run having better control was the best option, not only for my retinopathy but also to prevent any further diabetes related complications.

So the good news... In March this year the DVLA asked me to have an eye test to see if my retinopathy, or the treatment involved, had caused damage that would stop me from driving. Up until that point my consultant had said that he had no worries over me driving, and the DVLA had been informed of this, but it's always nerve-wracking having the fate of my driving licence in someone else's hands. Not being able to drive would cause me all sorts of problems and I expect it would cost me a lot of money to get around. Something that I can't afford at the moment. The DVLA took 4 months to send their answer (though they state on their website and forms that this process will only take 6 weeks!) and I finally found out this week that I've passed all their tests!! The field vision test that checks my peripheral vision was absolutely fine (laser treatment can cause this to deteriorate) and I can read a licence plate from the required distance :)

Finding out this good news after being told 2 years ago that it was likely I'd lose my sight has been wonderful! Although getting on track with my diabetes hasn't been easy it's definitely paid off. If I could pass on any kind of message from this journey it would be that I really wish I hadn't ever reached the stage where I was in absolute panic thinking that I would go blind... I wish I'd done something much sooner to prevent it from happening. If anyone else is going through a similar experience then I'd say hang in there, talk to your diabetes team and ask them to liaise with your eye team, research treatments and ask about what's available to you (Avastin was purchased by my hospital Trust but isn't used by all) and slowly tighten up your diabetes control... Quick changes can sometimes cause problems, so it's best to be slow but steady - that's why it's important for your diabetes team and eye team to talk to one another.

Ninjabetic x