Monday, 13 January 2014

Keeping my eye eyeballs

When my eye care was transferred from the community clinic to the retinopathy specialist in the Summer of 2009, I didn't really understand what that meant.  Rather, I understood it - the fact that something about the condition of my retinas had deteriorated - but I didn't really understand the implications of that referral. I figured that at 23 years of having had T1 diabetes, this was fairly standard procedure and that changes would, perhaps inevitably, always happen. 

I have never resigned myself to any particular 'fate' with my diabetes.  And since becoming an adult and emerging from my teen years (see also: total disengagement from all forms of clinical care), I have strived to take care of myself. But when you have T1 diabetes you have to learn to face up to the fact that complications may happen.  Although good blood sugar control is widely accepted as the most effective way of reducing the risk of complications, it does just that; reduces risk.  It could, and might, still happen.

As part of that referral my appointments were ramped up from every 12 months to every three, and I no longer saw the friendly nurses at the clinic in a matter of 20 minutes as they photographed my eyeballs and sent me on my way.  Instead I moved to two-hour appointments with an hour-long wait with one of the senior Consultants at Queen Alexandra's Opthamology department, a quiet but personable man known to me only as Mr Booth.  

It wasn't until around a year after I first attended, and 6 months after starting my insulin pump journey, that I started to really ask about what 'all this' meant.  Mr Booth explained to me that a number of years of high blood glucose (BG) levels had left damage to my retina.  He told me to imagine that I had been scratching away at the same spot on the back of my hand, and that eventually that scratch would bleed.  He explained that BG levels over recommended levels (as opposed to the 'non-recommended' ones I had been having fun with) left this kind of damage on the retina.  He explained that my non-proliferative retinopathy (small bleeds) were not too great a risk at first, but that they were beginning to change and I was now considered at the transitional stage to proliferative retinopathy. In human terms, this means that in order to cope with the changes in my eyes, my body would start to grow new, smaller, weaker blood vessels, and that when these break from the incessant scratching I so loved they would leak larger, more damaging amounts of blood onto the retina.

Mr Booth gave me some trusted resources to go to to learn more, and always asked me to continue my hard work.  He was always kind and gave me the truth.  Sometimes that was a hard truth.  But I'm not a 'sugar-coat it' kind of girl (mainly because sugar was not about to help this situation.  Pun-tastic, yah?).  I like to hear it as it is.  It makes me take things more seriously.

So why is retinopathy so serious?  Well, this is why. When the capillaries begin to bleed the vision you are left with until blood disperses (which can take weeks) looks something like this:

As I'm sure you can imagine, life through these eyes is a damn-site tougher.  There would be no driving.  Everything from shopping to working, and cinema to time-telling - everything - would be a challenge.  And it wasn't a challenge I was ready for, or ready to accept, anyway.

I knuckled down, exercised, mastered my pump, bought myself CGM and worked really hard at my diet to find more blood-sugar friendly foods. And I secretly prayed to a God I don't believe in that things wouldn't get any worse.
Dilated pupils.  And approximately four-inch-long lower eyelashes?
January 2014 would mark four years since I first asked Mr Booth what was going on.  January 2014 marked the four-year anniversary of pumping.  And January 2014 also marked the time I was able to rejoin those nurses at the community clinic.  Today marked my annual eye-dilation and photo-shoot and the evidence was there; after four years of constant efforts to keep things on a tighter leash, my eyes have finally shown the progress the Opthamologist needed to see in order to sign me off from their intensive service.

My latest set of eyeball photo-shoots evidenced that not only had I been able to stave off the transition into established proliferative retinopathy, but I had also managed to reverse the damage and put myself fully back into non-proliferative retinopathy (also known as background retinopathy).  And the better news still is that background retinopathy can be reversed even further, returning to a normal, healthy eyeball.

This is, of course, my new aim.

Cateract.  Sparkly.
My cateracts are still in full swing (another complication of diabetes: it speeds everything else up), but they are operable and not something I worry myself about at the moment because I still have
what they call 20/20 vision.  

Complications can happen, and I will be ready for them if, or most likely when, they do.  But in the meantime, if you've been diagnosed with retinopathy and think 'well that's it', (because that's what we are often led to believe), that's not it.  There are ways to reduce your complications and give yourself the best chance to stay complication-free as long as you can. 

Wanna get intimate?  Then check out my balls.  

June 2009.  Haemorrhages showing on the left side of the eyeball (red dots)

January 2014.  Haemorrhages vastly reduced and showing signs of reversal.
And a much healthier looking eye all-together.  


  1. YAY I'm so happy for you!
    Retinopathy is the complication I fear the most from diabetes- I'm so so happy you reversed it.
    Good job!!

    1. Thanks Ellie. It sounds like you are already headed in the right direction for keeping your eyes healthy. You've got the passion!

      If you ever are diagnosed with it - please don't give up hope! I have put mine back a stage and am back to background retinopathy which I was diagnosed with more than 10 years ago and can stay like that for a lifetime without progressing.

      Sometimes these things just happen and can move quickly, but had I given up at that stage I have no doubt I would be a long way down the road.

      Keep up the good work!

  2. Hi Anna,

    So happy for you. My son is nearly 29 and has had T1 since he was seven. He was just told that he has background retinopathy. Your journey has given me hope. Congratulations.

    1. Hi Cindy,

      So sorry for the delay - he bog no longer notifies me of comments on the blog, as I discovered this evening!

      Background retinopathy is COMPLETELY manageable! And never needs to go past background with the right attention. And even if it did, it can be reversed right up until a certain point.

      Keep on having faith, your son has clearly already done lots of years with great success


      AP :)

  3. I am terrified. I am T2 (diagnosed in 06) Didnt care for few years. Always got my eye exams and all were clear until this time. I was told I have minor diabetic changes (as mild as you can get) yet he looked in there too long. I have been a wreck since this (in June). I cannot go blind I have a retirement plan but no plan B for making it from 42 to 65. I was about to give up. Controller blood sugars is something I find hard. I can get my A1C to 6.5 but we really need a way to control it WITHOUT diet and excercise. A wonder drug. I am trying. I barely want to eat now I am so scared