So scared I'm going blind

[Helen40]

Very worst case scenario, I was just listenig to a podcast interview with a totally blind chap who managed successfully to raise 2 small sons all alone after his young wife died. But you are certainly not there yet!

I am in awe of such amazing people, that's amazing!

 

[Grant_Vicat]

Hi, thankyou for replying, medical support isn't great although my consultant when I get to see him is nice he's just so busy, when I saw him after this hemorrhage he said he hasn't had anyone in 10 years go blind as in darkness, although I will most likely lose my licence, comforting but but there's all these questions as to what degree of sight might I hope for or what does 'blibd' mean to him, what is legally blind?

I hope you end up as surprised as I have been 37 years after I thought much in the same way as you now. Victrectomy wasn't an option then. What more options might you have in the near future?! Very good luck.

 

[Alexandra100]

what is legally blind?

I can't answer this question properly, but a friend of mine who was legally blind managed an independant life including living alone, cooking for himself and others, travelling (without a guide dog), even a solo walking holiday on a long distance trail in France. He did claim to be no good at housework, but then neither am I.

 

[Jaylee]

Please please someone talk to me, I'm 45, type 1 for 28 years, I have severe odr in both eyes and macular oedema. I have eyelea every 6 weeks for the past year. Had a bad bleed in one eye on the 28th September and it still hasn't cleared? If I look just through that eye there are missing bits that stop mule seeing someone's eyes, nose etc. I can't read subtitles anymore and my daughters read it out for me. I was told I may lose my licence in later years but I feel like everything is happening NOW and this is it for me sight wise, when I'm on my own I just sob at how ill cope, will I lose my independence, my Job, my oartner?? Is there any hope for Improvement? My daughters need me and what use will I be if I can't see? Sorry to moan and feel sorry for myself but my resilience is all but gone

Hi,

I've had Macula oedema. Still being monitored it doesn't come back. For a while I was a worried guy at one point using "accessibility" on devices..
How is your BG management? Easier said than done, but reasonable in targets can help... Just don't go tightening controll like a "bull at a gate." That's what kinda caused mine. Should have gone a little slower. Thought I'd gotten away with eye issues, having the "all clear for years" then I got a slap in the face with something I'd never heard of before..

If you wear prescription lenses? Make sure you are stable with your treatment before going for an eye test.?

I still hold a valid UK driving licence, you may need to go for a vision "field test" come next renewal. There was no charge for this with DVLA or the recommended optitian on the local choice list.

Hope this helps..

 

[Helen40]

I hope you end up as surprised as I have been 37 years after I thought much in the same way as you now. Victrectomy wasn't an option then. What more options might you have in the near future?! Very good luck.

Thankyou, as of now its been lassr and for past year eyelea injections, he mentioned the surgery last time, hopefully I'll hear more about next steps on the 16th, fingers crossed, hope you're doing well

 

[Helen40]

Hi,

I've had Macula oedema. Still being monitored it doesn't come back. For a while I was a worried guy at one point using "accessibility" on devices..
How is your BG management? Easier said than done, but reasonable in targets can help... Just don't go tightening controll like a "bull at a gate." That's what kinda caused mine. Should have gone a little slower. Thought I'd gotten away with eye issues, having the "all clear for years" then I got a slap in the face with something I'd never heard of before..

If you wear prescription lenses? Make sure you are stable with your treatment before going for an eye test.?

I still hold a valid UK driving licence, you may need to go for a vision "field test" come next renewal. There was no charge for this with DVLA or the recommended optitian on the local choice list.

Hope this helps..

Hi there, may I ask what treatment you had and how long did it take to improve? It's good it can improve as I wasn't sure tbh, yep I think I'm due a field test at my next follow up on the 16th!

 

[Helen40]

Hi there, may I ask what treatment you had and how long did it take to improve? It's good it can improve as I wasn't sure tbh, yep I think I'm due a field test at my next follow up on the 16th!

Ps management is good, I carb count which helps loads, my consultant was fab and said I'd done well to manage 26 years without complication and 3 healthy children, I've always had weak eyes.... Its the one thing I was always scared of with type 1 too lol

 

[Helen40]

I can't answer this question properly, but a friend of mine who was legally blind managed an independant life including living alone, cooking for himself and others, travelling (without a guide dog), even a solo walking holiday on a long distance trail in France. He did claim to be no good at housework, but then neither am I.

Hey thanks for that, it's really inspiring to hear real life stories of people getting on with it, I keep seeing ads on the TV about people waking up and it was black and they'd lost jobs and friends, very bleak.

 

[Jaylee]

Hi there, may I ask what treatment you had and how long did it take to improve? It's good it can improve as I wasn't sure tbh, yep I think I'm due a field test at my next follow up on the 16th!

Oooh, let me think. Started about 4/5 years back. Optitians discoverd something was up. They asked for my GP's address, he referred me to the hospital..
The issue initially was in the right eye. So, I had a course of 6 shots (1 a month.) of Lucentis? Then during monitoring. I needed another 4. But this time eylea.. At this point because I wasn't having treatment in both eyes I didn't need to declare to DVLC.
Then the kicker, I needed it in the left eye too.. I had a course 4 shots in the left eye & possibly 2 in the right?? I was starting to loose count. Lol, I would show up for an appointment at the ophthalmology department & it was just a scan for retinopathy? (All clear on that.) I renewed my licence February this year, so had to do the "vision field test."

I don't think I've needed any treatment since last year?? (I've seriously lost track of it.)
I just go for the scans every 4 to 6 months. & grab the appointments with both hands....
They were pretty much every 4 weeks I either had to be walked to the ward next door for a jab or not.
I was meant to go for a check up last April? But they cancelled on me due to the C19 mularkey..

Yep, it's improved immensely for me. Even with corrective vision, no more "pinch & zoom," no more using the camera on my phone to blow up the "small print."

I realy should chase them up...

 

[Helen40]

That sounds really positive?! Pleeease let that happen to me, I've had two bleeds in 1 and a half years, but I think a few smaller bleeds in the left eye since September, thank goodness for being able to change font size on phones I need to stop constantly checking my left eye, the central vision is just dark blurs there

 

[Jaylee]

That sounds really positive?! Pleeease let that happen to me, I've had two bleeds in 1 and a half years, but I think a few smaller bleeds in the left eye since September, thank goodness for being able to change font size on phones I need to stop constantly checking my left eye, the central vision is just dark blurs there

The back of the eye get distorted like "a hall of mirrors." A "C" for me could be an "O" or possibly a "Q?"
A "P" could be an "F?" "Rs" like "Ks." Not good..

If it's any more consolation to you I was about your age when diagnosed..

I wish you all the best. But it goes without saying keen managment on your diabetes can help.

 

[Rustang21]

@Helen40 I just wanted to reply to say I know exactly how you feel. My situation is slightly different to you in that I had a bad bleed in my right eye right before lockdown that didn’t clear. For months I had nothing but black in that eye but learned to live with it.
After restrictions eased I finally got a vitrectomy on it and it is by far and away the best decision I ever made.
I’m not out the woods yet as my retina is badly wrinkled in it due to the delay but I can see now and even read letters off the chart, something impossible in the summer. ive also been unlucky as my other eye has now had a bad bleed but if I need a vitrectomy in that one I would 100% agree to it.
There are risks but if it’s a good, experienced surgeon then the chances of an improvement are very good. I wish you all the best whatever happens.

 

[Helen40]

@Helen40 I just wanted to reply to say I know exactly how you feel. My situation is slightly different to you in that I had a bad bleed in my right eye right before lockdown that didn’t clear. For months I had nothing but black in that eye but learned to live with it.
After restrictions eased I finally got a vitrectomy on it and it is by far and away the best decision I ever made.
I’m not out the woods yet as my retina is badly wrinkled in it due to the delay but I can see now and even read letters off the chart, something impossible in the summer. ive also been unlucky as my other eye has now had a bad bleed but if I need a vitrectomy in that one I would 100% agree to it.
There are risks but if it’s a good, experienced surgeon then the chances of an improvement are very good. I wish you all the best whatever happens.

That is just amazing news! I am genuinely so happy you can see again, are ypu able to drive? I have a field vision test soon eek, I'll definitely go for the surgery if I can, should know more next Wednesday. I'm so sorry for this happening to you too but this forum and people like you give me so much needed hope. Thankyou and please keep me updated on your progress, wishing you all the very best x

 

[Helen40]

Had a, really bad day yesterday, everything just overwhelmed me and I felt there was no hope and no point. I'm about to start the process with the dvla to see if I can still drive and that's terrifying me, how would me and my daughters manage then? What about my job? Someday it just feels like I'm sat waiting for the inevitable and I can't handle it. My oartner Constantly reassures me it changes nothing for him, but how can it nothing for him but how can it not? Appt on Wednesday with consultant, I've tried so hard to stay resilient but it's hard today

 

[Angey]

Please please someone talk to me, I'm 45, type 1 for 28 years, I have severe odr in both eyes and macular oedema. I have eyelea every 6 weeks for the past year. Had a bad bleed in one eye on the 28th September and it still hasn't cleared? If I look just through that eye there are missing bits that stop mule seeing someone's eyes, nose etc. I can't read subtitles anymore and my daughters read it out for me. I was told I may lose my licence in later years but I feel like everything is happening NOW and this is it for me sight wise, when I'm on my own I just sob at how ill cope, will I lose my independence, my Job, my oartner?? Is there any hope for Improvement? My daughters need me and what use will I be if I can't see? Sorry to moan and feel sorry for myself but my resilience is all but gone

Dear Helen. How frightening .... and good for you for posting. Like you I’m a long term type one (50years). I’ve had eye issues since my first pregnancy back in 1981. I do want to tell you that even terrible things can heal in your eye. I’ve had a lot of them and at 63 can still see drive etc and don’t wear glasses. Firstly, Can I ask if you’ve been seen by an optician, ophthalmologist etc? I guess so from what you said. Important to be in the system. I’ve had 2 vitrectomies (one just this summer in France) and again my eye has healed. I did the battle in my head about going blind again this summer and I know how frightening it is. Years ago I thought I was going blind and my work were fantastic... getting me a Dragon speech activated software etc. Yes there were some thing I couldn’t do and life was harder for a while but actually I could cope and did. You will get through this but it will be hard and I’m sure your family will help and 20 years on from my experience the technology is there to help if needed.

I shall be thinking of you. Good luck and keep in touch.
Angey

 

[Helen40]

Thankyou from the bottom of my heart, to hear from others who have first hand experience is incredibly lifting. I've been drowning in despair and worry, I can't express enough how this forum has helped me and stopped me driving my family mad lol, I get more eyelea Wednesday (been a year now but last bleed on Sept 28 was a nasty one) hopefully find out more about surgery. I'm so pleased you are well and have made it through! Thankyou so very much for your kind words xx