Scared of losing my vision

[Natalieroberts2015]

Hi I’m Natalie I’ve been diabetic for 19 years and the last few months I’ve been having bleeds behind my eye I’ve had 2 lots of laser and yesterday I developed another bleed.
I’ve been booked in for more laser for next Thursday but feel like laser ain’t really working
Has anyone else been in this boat?? I just feel alone right now and terrified I’m gonna go blind

 

[himtoo]

hiya lovely xxxxxxxxx
glad you have found us xx

I have been T1D for over 45 years -- I have had 2 lots of laser -- ( and some injections for maculopathy) and I can still see and still drive and still read----

my advice is just to try your hardest to keep calm ( hard I know )
the care for us D's with eye issues has never been better
I am tagging @Dark Horse -- our resident expert on eyes here on the forum xx

please do keep posting with us -- I am happy you have found us Natalie
take care -- and keep posting

himtoo
xxx

 

[Sjr83x]

Hi. I’m sarah. Type one for 21 years and went through this during summer. I’ve had countless bleeds. Countless laser. Still more required. But I’m good. I’ve got my sight in both eyes. It gets worse before it gets better that’s so true. And I had a lot of stories from people less lucky so I really thought I was going to go blind. But I’m not. It’s taken 6 months for me to get to a place where I trusted that I was going to be ok. Trust in your doctors. Pester them. See them as much as you need. See a councillor you can get in touch via the diabetes Center. Thinking of you through this. Only people who’ve lived it can understand. I understand

 

[Natalieroberts2015]

Thank you for your reply I’ve tried my hardest to keep sugars and everything under control but it’s not that easy especially when your suffering with depression and anxiety I’m scared the fact I have a 17months old and don’t want to go blind and miss out on her growing up x

 

[himtoo]

Hi. I’m sarah. Type one for 21 years and went through this during summer. I’ve had countless bleeds. Countless laser. Still more required. But I’m good. I’ve got my sight in both eyes. It gets worse before it gets better that’s so true. And I had a lot of stories from people less lucky so I really thought I was going to go blind. But I’m not. It’s taken 6 months for me to get to a place where I trusted that I was going to be ok. Trust in your doctors. Pester them. See them as much as you need. See a councillor you can get in touch via the diabetes Center. Thinking of you through this. Only people who’ve lived it can understand. I understand

hi @Sjr83x
what a lovely supportive post - please pick me in your team next time you are choosing sides !!!!!!!

 

[Natalieroberts2015]

Hi. I’m sarah. Type one for 21 years and went through this during summer. I’ve had countless bleeds. Countless laser. Still more required. But I’m good. I’ve got my sight in both eyes. It gets worse before it gets better that’s so true. And I had a lot of stories from people less lucky so I really thought I was going to go blind. But I’m not. It’s taken 6 months for me to get to a place where I trusted that I was going to be ok. Trust in your doctors. Pester them. See them as much as you need. See a councillor you can get in touch via the diabetes Center. Thinking of you through this. Only people who’ve lived it can understand. I understand

Thank you means a lot that others know what I’m going through. I didn’t really want to write on here but I’m going stir crazy not telling people how I’m feeling. This reply has made me a little better to know there are positive out comes for this x

 

[himtoo]

Thank you for your reply I’ve tried my hardest to keep sugars and everything under control but it’s not that easy especially when your suffering with depression and anxiety I’m scared the fact I have a 17months old and don’t want to go blind and miss out on her growing up x

i know hun -- I really do know
just keep posting and there is a great community of support here
we won't let you do this on your own !!!!!!

 

[Natalieroberts2015]

i know hun -- I really do know
just keep posting and there is a great community of support here
we won't let you do this on your own !!!!!!

Thank you very much I’ll keep you all posted hopefully next week my vision will start improving x

 

[Sjr83x]

Thank you for your reply I’ve tried my hardest to keep sugars and everything under control but it’s not that easy especially when your suffering with depression and anxiety I’m scared the fact I have a 17months old and don’t want to go blind and miss out on her growing up x

Speak to your diabetic team. I saw the clinical psychologist a lot. I was worried about seeing a psychologist but she helped me sooo much with my anxiety. It’s really bloody tough this disease. But you are not alone. You will not miss out on your baby’s growing up. It takes time. A lot of time. But there’s a whole community here ready to talk you through it. I’m always here I’ve lived it and still am living it. It will get better. Keep trying

 

[Sjr83x]

hi @Sjr83x
what a lovely supportive post - please pick me in your team next time you are choosing sides !!!!!!!

Haha I choose everyone’s side over this disease! Thank you

 

[Natalieroberts2015]

@Sjr83x thank you your my inspiration to fight this all the way I’ll speak to my team tomorrow and get things sorted xx

 

[himtoo]

Haha I choose everyone’s side over this disease! Thank you

LOL -- I said that badly -- I meant choose me in your TEAM -- the team of WINNERS !!!!!!!!!!

 

[Sjr83x]

@Sjr83x thank you your my inspiration to fight this all the way I’ll speak to my team tomorrow and get things sorted xx

One final thing I would say if you’ll bear with me. With hindsight I read up on it too much. Read too many other people’s stories who were maybe less successful. And it made me a million times worse. You can’t compare. We’re all so different, from time of diagnoses to treatment to HbA1cs. Don’t dwell on the horror stories as I saw them. I wrote a blog during my journey. And when I look back on the posts I wrote in the beginning you can see how heavily influenced I was. Listen to your doctor they’re the only ones who can see your eyes.

 

[gwai84]

Completely agree with everything that's been said - there are lots of horror stories out there and doing too much digging and reading will make you feel more anxious and even worse than you already do. Most people do well with laser & other treatments, but those aren't the stories you read and certainly not the ones you remember!

Trust your team - don't be afraid to push them for more information, but they really are the experts. Treatment of eye disease nowadays is highly effective - obviously there are no guarantees, but hang in there. After laser eye disease can takes months to settle down, and it may get worse before it gets better, but there will be plenty that can be done.

I had something not dissimilar at the beginning of this year - developed aggressive eye disease seemingly out of nowhere and needed a lot of laser (type 1 for 25 years). I was terrified I was going blind, I'd just gotten engaged and was convinced I'd have to give up my job and my fiance would leave me. After a few laser treatments things have stabilised and now beginning to regress, vision is still fine, and life has gone on as normal.

I completely understand how you feel, it's absolutely hideous! But please be reassured by the positive stories out there. You're not alone and we're all rooting for you.

Keep us updated!

 

[Natalieroberts2015]

Completely agree with everything that's been said - there are lots of horror stories out there and doing too much digging and reading will make you feel more anxious and even worse than you already do. Most people do well with laser & other treatments, but those aren't the stories you read and certainly not the ones you remember!

Trust your team - don't be afraid to push them for more information, but they really are the experts. Treatment of eye disease nowadays is highly effective - obviously there are no guarantees, but hang in there. After laser eye disease can takes months to settle down, and it may get worse before it gets better, but there will be plenty that can be done.

I had something not dissimilar at the beginning of this year - developed aggressive eye disease seemingly out of nowhere and needed a lot of laser (type 1 for 25 years). I was terrified I was going blind, I'd just gotten engaged and was convinced I'd have to give up my job and my fiance would leave me. After a few laser treatments things have stabilised and now beginning to regress, vision is still fine, and life has gone on as normal.

I completely understand how you feel, it's absolutely hideous! But please be reassured by the positive stories out there. You're not alone and we're all rooting for you.

Keep us updated!

Thank you for your reply means a lot that others like yourself have suffered with it and having really positive outcomes it makes me feel a little less anxious bout it now.
Hearings that there is so many of you going through it makes me not feel so alone and I think the same would my fiance leave me if I did go blind but to be fair he’s my rock and even my little girl knows that something is wrong.
Thank you ever so much will keep you all informed and let you know what the out come is

 

[Dark Horse]

It's not unusual to have several bouts of laser for proliferative diabetic retinopathy. One reason is that the laser can affect night vision and peripheral vision and therefore affect the ability to drive. Ophthalmologists therefore give the minimum amount that they think will be effective in stopping the disease then wait and check to see if the disease has stopped progressing. If there are signs that the disease is continuing, more laser is given. Someone may have several laser treatments before they reach the maximum.

Unfortunately, during this period there may be additional bleeds which can be a nuisance and affect sight until they clear. It doesn't mean that the laser is not working - it just takes some time for the fragile new vessels to regress. If the bleeds don't clear of their own accord within a few months, there is surgery available called a vitrectomy. If it ever comes to that, there are people on this forum who are happy to talk about their experiences of it and how it helped them. If you drive, you'll need to inform the DVLA that you've had laser treatment and you may need to take a field test to prove that your peripheral vision is still good enough for driving.

Granted, it's a worrying time but you are in the right place - you've been diagnosed and you are receiving treatment by experts. Only worry enough to make sure you attend all your appointments and to work on getting good diabetic control, as that is the key to preventing further problems.

 

[Natalieroberts2015]

Earlier on the blood had gone all stringy now within the last five minutes I had another blob of blood appear is this normal with the bleeding behind the eye anyone else had this?? Sorry I’m panicking like mad

 

[himtoo]

hiya natalie -- that is a normal raction to laser treatment
-- I feel horrible for you getting this -- but try not to worry too much

xx

 

[Natalieroberts2015]

I feel a pain right now but writing to everyone on here seems to be helping me a lot to deal with this horrible situation that we are going through. But thank you for the reply @himtoo x

 

[himtoo]

there can be some pain as well with what you are experiencing -- if it continues -- then do talk to your eye department tomorrow ( just for your peace of mind -- not because of anything bad )

LOL -- reading your post again -- perhaps you mean you think you are a pain to us here on the forum -- WELL you're NOT !!!!!!!!!!!!!!!!!!!

hugs [[[hugs]]]

xx