The all-inclusive T1ED + retinopathy thread

[asortafairytale]

Hi all,

The purpose of this thread is to provide a place for members to discuss concerns regarding retinopathy as this is a common complication of diabetes and eating disorders. This is because high glucose can impact the nerves at the back of our eyes and causes changes in the tiny blood vessels there. Anyone is still very welcome to start their own separate threads on topics of this theme but this all-inclusive one serves as a place with a little less exposure as we know it can be daunting to start new posts in a mostly empty forum.

Best wishes,
asortafairytale.

 

[asortafairytale]

Eye screening Monday. Vision blurry lately so wasn't expecting good news, Letter came Wednesday and I have 'sight threatening retinopathy', needing urgent referral to hospital for more treatment and have an appointment Wednesday. I think I am scared? I don't even quite know. Told my mum and she just had a go at me and said I've only myself to blame .

 

[lexxfromdwed]

Treatment can work wonders hon. I know people who are doing great after having all sorts done under similar circumstances and are still driving. I think at this point i'd be reeling a bit from shock, even if you half expect that kind of news, it still throws you.

Hopefully your mum will adjust and be more supportive. She's probably shocked too. Hope you are feeling ok. Wednesday will roll around quick and you'll have a better idea of what to expect once you've been to the appointment.

Big hugs xx

Sent from my SM-J510FN using Diabetes.co.uk Forum mobile app

 

[DCUKMod]

@asortafairytale - No matter how much we "know" something, it still packs a punch when it's confirmed.

Sometimes those closest to us say the bluntest things, and sometimes those satatements reflect their shock or emotional turmoils, so maybe give your Mum time? She must be very worried for you.

As usual in these circumstance, I suggest you take a list of your questions, and a notepad for notes, because these sorts of appointments tend to affect our memories.

There may well be similar threads, from the past, in the wider forum that might help you.

Fingers crossed for you.

 

[himtoo]

hey lovely !!
it is not a fun letter to get -- I first got that letter in 1992 and had my first laser 10 years later(2002) -- and then 10 more years(2012) till my next laser treatment-- so please please please --- try not to worry too much
hugs [[[hugs]]]

 

[Jaylee]

Eye screening Monday. Vision blurry lately so wasn't expecting good news, Letter came Wednesday and I have 'sight threatening retinopathy', needing urgent referral to hospital for more treatment and have an appointment Wednesday. I think I am scared? I don't even quite know. Told my mum and she just had a go at me and said I've only myself to blame .

Hi,

I'm rooting for you too.. Macula oedema was my "call up" two years back?
My mum has Altziemers. I told her, she empathised, then forgot.. It's like she's hearing it for the first time on a loop.. I've given up mentioning it...

There is a lot of advancement in these eye treatments, see your consultant understand your options & ditch the worry.
You can arm yourself with knowing what your dealing with & overcome!
I'm going to tagg in @noblehead , he's some experience..
If you can take a good friend with you to the apointment? Do..
My wife attended with me! I needed a driver.
You are not to blame.

Wishing you all the best. Please let us know how you get on.

J>

 

[Sarebear86]

My advice is don't take to heart the information on the internet! I got the same letter and took to google to read about it, after half an hour I was in floods of tears thinking I was going blind and had no hope! Two years later, two lots of laser in both eyes and two rounds of 5 injections in each eye my vision is finally settling down. Take a friend and some sunglasses and don't worry too much, just remember that there's still time to sort this problem out, I'm sure you'll be okay x

 

[saruhbeau]

Eye screening Monday. Vision blurry lately so wasn't expecting good news, Letter came Wednesday and I have 'sight threatening retinopathy', needing urgent referral to hospital for more treatment and have an appointment Wednesday. I think I am scared? I don't even quite know. Told my mum and she just had a go at me and said I've only myself to blame .

Sorry to hear this. I had the same news, it is a shock isn't it. What did the consultant say? Although it is a shock and sucks, it can be treated so it shouldn't get worse and they will monitor you closely.x


I am almost 20 weeks pregnant so had an extra eye screen a couple of weeks ago. I already knew I had severe retinopathy in my left eye, pre-proliferative in my right and maculopathy in both and am already under the eye clinic. Not surprising the results came back showing sight threatening retinopathy and also maculopathy.

Diabetes consultant was really rude and told me I was careless to fall pregnant when my eyes aren't stable. Like I am not worried enough about my eyes. My vision is so blurry some days I don't choose not to drive.

I have urgent eye clinic appointment on Thursday. The dilating drops make me vomit every time so I'm dreading it to be honest.

 

[Shannon27]

Eye screening Monday. Vision blurry lately so wasn't expecting good news, Letter came Wednesday and I have 'sight threatening retinopathy', needing urgent referral to hospital for more treatment and have an appointment Wednesday. I think I am scared? I don't even quite know. Told my mum and she just had a go at me and said I've only myself to blame .

I know it was a while ago but I hope your eye appointment and treatment went ok I sympathise with you, it's awful when you go to someone worried, looking for some support but they turn around and basically tell you it's your own fault - it's like "excuse me, why don't you try living with this day in day out and see how your eyes are after a few years!" Especially when it's a parent.

If any diabetes related problems came up while I was a teenager I got told it was my own fault for not looking after myself better, and that I'd most likely die young.

I have some background retinopathy (have for the last 5-6 years) but it's not really affected my eyesight until recently. Now and then I have slightly blurry vision (nothing major, more like I can't read a book). Hoping it doesn't get worse as I drive a lot for work. I have glasses (non prescription) but I don't use them very often.

 

[jacqfromdwed]

keep everyone informed because both type 1 and type 2 get retinopathy

yes but this is in the Type 1 and Eating Disorders section, we are not experts in type 2 here we are specialist mods for people who have type 1 and eating disorders

 

[therower]

yes but this is in the Type 1 and Eating Disorders section, we are not experts in type 2 here we are specialist mods for people who have type 1 and eating disorders

WELL SAID.

 

[DCUKMod]

Guys, please let's not deflect this thread from it' purpose of of supporting T1s, with eating disorders who have retinopathy.

 

[Soapybubs87]

I am 30 years old have suffered on and off with bulimia since 12 (it was a control thing) got diagnosed at 15 with diabetes, about 2 years ago i got an eye infection i work in a hospital so nipped to urgant care withing 20 mins i was seen by the retina unit and having lazer which at 1st made my site so bad so i disnt go to my next appointment i then went practically blind i couldnt see my own face xlose up!! Since then i have had numerous eye lazers and 6 injections in to my eye, ive been tild that my sugars need to be perfect so not to prevent any more bleeding but i just feel it is impossible sometimes all i have to do is smell a cookie or somwone open a bag of crisps near me and my BS seems to rocket! Really fed up now and scared about going blind. Really dont think id cope

 

[Soapybubs87]

I am 30 years old have suffered on and off with bulimia since 12 (it was a control thing) got diagnosed at 15 with diabetes, about 2 years ago i got an eye infection i work in a hospital so nipped to urgant care withing 20 mins i was seen by the retina unit and having lazer which at 1st made my site so bad so i disnt go to my next appointment i then went practically blind i couldnt see my own face xlose up!! Since then i have had numerous eye lazers and 6 injections in to my eye, ive been tild that my sugars need to be perfect so not to prevent any more bleeding but i just feel it is impossible sometimes all i have to do is smell a cookie or somwone open a bag of crisps near me and my BS seems to rocket! Really fed up now and scared about going blind. Really dont think id cope

I might add the consultant has been fab and i can see well enough to still work and read thank god for nhs as the injections are a thousand pounds per injection

 

[DCUKMod]

I might add the consultant has been fab and i can see well enough to still work and read thank god for nhs as the injections are a thousand pounds per injection

Hi there Soapybubs87 - You do seem to have been through the wars.

Hopefully a few more T1s will around this evening to chat with you.