Monday, 12 March 2012

Retinal Rage and Making Mistakes

Last week wasn't the best.  Unfortunately new-found knowledge managed to put a downer on the majority of my days.  I'm now ready to blog about it and perhaps vent my frustrations about the current circumstance regarding my diabetes.  Apologies in advance, just in case.

I try to maintain a positive mind-set about my diabetes.  I acknowledge that there are far worse diseases to have and much more unfortunate situations to be in.  I also respect that diabetes, when well managed, doesn't have to compromise your general health or lifestyle.  That's why it just about broke my heart when I received a letter to inform me that I have developed background retinopathy.

Being told this at the age of 19 isn't what I wanted to hear, to say the least.  I felt upset of upset that I bawled my eyes out for about an hour.  Most of all I felt angry.  Angry that I'm 19 and I have background retinopathy, angry that I feel like I've tried so hard for 15 years to control my diabetes well, but more than anything else I was angry with myself for, what felt like, obviously not doing enough.

I find that there's a lot of guilt involved in diabetes.  I recently read a fantastic post from Meagan Esler at Diabetes Health that confirmed this to me.  I end up feeling guilty if my bg's are too high or too low or if my HbA1c isn't the percentage it should be and I feel guilty that my loved ones are affected by it almost as much as I am.  If I let it, the guilt surrounding my retinopathy could probably consume me.  I feel awful that I've allowed those ketones to even exist, let alone harm me.

So I spent a week beating myself up about this, but there has to come a time when you stop torturing yourself and give yourself a break.  I deal with the rollercoaster ride that is diabetes management every single day of my life.  Alright, so in the past 15 years there will have been days when I haven't carb counted correctly or I've accidentally given an insulin shot later than I should have done or I've eaten a chocolate bar or two.  Perhaps these mishaps are the causes of my background retinopathy - I'll never know for sure.

I refuse to live my life continually making myself feel bad.  Of course, I am making changes; I'm now trying harder than ever and making even more effort to ensure that my blood sugar levels are balanced.  I just think it's about time that we diabetics cut ourselves a bit of slack.  Why is it that so many of us end up, probably subconsciously, thinking that having diabetes deprives us of something that makes us all human?  No one is perfect.  Everyone makes mistakes and everybody is allowed to...yes diabetics, even you!


  1. You did the best anyone can do! A lot of people forget or ignore the genetic propensities of getting complications of one type or another. WE can only do so much, but the DNA has a big say in this as well, which is doubly frustrating.

    I do hope that this is early enough to get onto the best ophthalmic care right now. Although it may be of little comfort, Most cases of retinopathy results in maybe 5% actual vision loss. I have only the best wishes for you.

  2. Hun im a fellow type 1, on a pump 23 yrs with diabetes! I developed retinopathy at 26 while pregnant with my daughter. ITs OK!!!! Do not fret or fear or stress! I have perfect sight, ive gone on to have another healthy baby and i run daily so dont let this hold u back for even a second! You have every right to be angry but no right at all to feel guilty; stand stall sistah and think of ur positives, life isnt about the hand were delt but more with what we do with it!

  3. I'm sorry you're having a hard time. I'm coming up to my 15 year diabetes anniversary and was also told a few years ago that I had the beginnings of diabetic retinopathy and also suspected maculopathy. My hba1cs have always been perfect although I wasn't always strict with my diet, and my consultant said it was just bad luck as we think my diabetes went undiagnosed for quite a long time. Anyway. I really got strict with my diet and exercise regime and at my last appointment, had the all clear and was told my control had improved so much that my eyes had managed to heal....I guess I'm just trying to say don't beat yourself up...I love reading your blog and I really wish you loads of luck xx

  4. I recently started with retinopathy and was devastated as well. I had gone 29 years without any eye issues! I'm not going to tell you not to be upset because I know what it feels like. But don't beat yourself up and think you did something wrong. Unfortunately diabetes comes with chances of complications. The best thing you can do is stay on top of the situation & make regular visits to the dr. These days they can do so much more to save your vision. I wish you all the best.

  5. I went through exactly the same thing two years ago and reacted in exactly the same way, balled my eyes out and beat myself up. However, when I discussed it with the hospital they said that the 'START' of background retinopathy can sometimes be reversed if you have been through a period where your bg has not been as tight as usual, whether that is down to stress, illness, lifestyle etc. Anyway the following year I had my screening and I was back to 'Normal' please don't loose hope. Its so tough to be positive all the time. I had an op on my back in Nov to remove an abcess and because of the diabetes I wasn't healing quickly enough and had a hole in my back which meant daily trips to the nurse. They operation was repeated two weeks ago and I thought I would soon have my life I found out that the same thing has happened again and I will probably need a third op....people have no idea what its like to live with Diabetes, so don't beat your self up too much, you are allowed down days. Take care x