Type 1 Diabetic retinopathy

[WreckTangle]

I was diagnosed with diabetic retinopathy last year around April/May time. They told me I had sight threatening diabetic retinopathy.
Then I lost my sight a bit. had to go to an emergency eye clinic and then had laser surgery straight away.
i couldn’t go to my diabetic eye screening in 2019 because of my bowel condition, but I also heard they were inviting people in 2020 even with the pandemic happening. I never got invited but my nan did. So I partly blame the diabetic eye screening as I hadn’t been for 2 years and I thought they’d invite me back sooner.

What I’d like to know is if it’s going to get worse from here? im registered sight impaired now but am I going to eventually go blind?
when should I expect my sight to go completely? This is still all new to me and I would just like to know what to expect from people who have the same.
Also I already know it’s my fault, so I don’t need to hear that.

 

[EllieM]

Also I already know it’s my fault, so I don’t need to hear that.

Please please please try not to blame yourself for your diabetes related complications. Look forward (how to improve control?) not back.

In a lot of ways health conditions are a lottery. No one knows why people get T1, even though they've been researching it for longer than I've been alive. And diabetes puts all sorts of strain on the body, both physically and mentally, which some people cope with better than others.

Many many many of the long term T1s here have had periods of less than ideally controlled blood sugars. (eg in my case, in my teens, preglucometer, I didn't even urine test and when I got my first glucometer I was running an hba1c of over 100 and my clinic oh so tactfully suggested that I might like to get my average bg under 13.) I've luckily escaped any major complications so far, but that is my good luck, not a statement that I have somehow been a "better" diabetic than those who have got worse complications.

What I’d like to know is if it’s going to get worse from here? im registered sight impaired now but am I going to eventually go blind?

Probably a question better asked to your optical team. We have no idea how severe your eye condition was before or after they treated it but be aware that they are very very good at treating eye conditions if they are being monitored properly, which I imagine yours will be from now on. The one good thing about diabetic retinopathy is that it is so common that the specialists have had decades of experience in both treating it and developing new techniques for that treatment. So very few diabetics go blind now compared with the situation a decade or so ago. Many/(most ?) long term diabetics have had laser treatment on their eyes.

There are a lot of posts from people with various stages of diabetic retinopathy so hopefully you'll get some more replies soon, though it's a bit late for the forumites based in the UK now.

I'm sorry you are in this position. I know I would be scared and frightened. But please try not to self blame. Lots of virtual hugs.