So scared I'm going blind

Helen40 · Dec 2, 2020

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

Qazugc · Dec 2, 2020

Aww, i feel so bad. Im here to talk if you need it, but i wont be in here often and i just joined

Helen40 · Dec 2, 2020

Qazugc said:
Aww, i feel so bad. Im here to talk if you need it, but i wont be in here often and i just joined

Thank you for replying!

Alexandra100 · Dec 2, 2020

Helen40 said:
Sorry to moan and feel sorry for myself but my resilience is all but gone

I'm so sorry to read about your predicament. Anyone would feel sorry for themselves experiencing all that, and with all the uncertainties and worries about the future. How much professional medical support are you getting?

Helen40 · Dec 2, 2020

Alexandra100 said:
I'm so sorry to read about your predicament. Anyone would feel sorry for themselves experiencing all that, and with all the uncertainties and worries about the future. How much professional medical support are you getting?

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?

SMS1 · Dec 2, 2020

I'm sorry to hear what you're going through. it's must be terrible to feel that way and have this happening to you.Is there anyone you can talk to in person? A support group or a helpline? Your partner? perhaps there is someone here who will answer with that information.

Helen40 · Dec 2, 2020

SMS1 said:
I'm sorry to hear what you're going through. it's must be terrible to feel that way and have this happening to you.Is there anyone you can talk to in person? A support group or a helpline? Your partner? perhaps there is someone here who will answer with that information.

Hello, thankyou for taking time to msg my partner is awesome, I did say he should leave me but he just takes it in his stride, he says I'm the one facing the changes so why should it affect how he feels about me I tried the rnib but the lady I spoke to was quite pessimistic as regards retinopathy as said she could only really talk about changes and gadgets I could look at applying for, I get that really, they can't know every medical condition can they lol, what I really need is someone who is going through this or has in the past? It's a very isolating experience

Alexandra100 · Dec 2, 2020

Helen40 said:
medical support isn't great although my consultant when I get to see him is nice he's just so busy,

In your place I think I would get my GP to refer me to see a consultant privately, as a one-off. Then you could take the time to ask all your questions.

Dark Horse · Dec 2, 2020

Sorry to hear you're feeling down. It's not surprising under the circumstances - anyone would find it hard to be phlegmatic month after month. On the plus side, you've been referred to the right place where there is a team of expert people dedicated to doing their best for your eyesight. Regarding the haemorrhage, they can take months to clear and even if it doesn't clear up due to repeated bleeds there is a treatment available - vitrectomy. The whole process may seem interminable now but there are people of this forum who have had similar circumstances and come out the other side -if you use the search function you should be able to read their posts.

I appreciate it's difficult, but rather than using up all your energy on worrying about 'what if', it would be better to harness the energy to attend all your ophthalmology appointments and to keep your diabetic control as good as you can because this will help your eyesight in the long term.

Helen40 · Dec 2, 2020

Alexandra100 said:
In your place I think I would get my GP to refer me to see a consultant privately, as a one-off. Then you could take the time to ask all your questions.

I guess I could, the consultant I have is from a private consultation I paid for at the very beginning and he agreed to see me on the NHS, he's a really nice guy and pretty highly rated in diabetes eye care, they just don't have the time to listen to every single worry from each patient do they. He saud it could take 6 months for my eue to clear and there's something called a vitreoctimy that can help, if anyone here has had that it would be great to hear a real life experience pkease

Helen40 · Dec 2, 2020

Dark Horse said:
Sorry to hear you're feeling down. It's not surprising under the circumstances - anyone would find it hard to be phlegmatic month after month. On the plus side, you've been referred to the right place where there is a team of expert people dedicated to doing their best for your eyesight. Regarding the haemorrhage, they can take months to clear and even if it doesn't clear up due to repeated bleeds there is a treatment available - vitrectomy. The whole process may seem interminable now but there are people of this forum who have had similar circumstances and come out the other side -if you use the search function you should be able to read their posts.

I appreciate it's difficult, but rather than using up all your energy on worrying about 'what if', it would be better to harness the energy to attend all your ophthalmology appointments and to keep your diabetic control as good as you can because this will help your eyesight in the long term.

Oh thank you, I did read an excellent thread by a lady called jeb I think? It gave me so much hope, I screenshot Ted one of her posts and when I feel really low I re read it, it just gives me strength to get through darker days

Helen40 · Dec 2, 2020

Helen40 said:
Oh thank you, I did read an excellent thread by a lady called jeb I think? It gave me so much hope, I screenshot Ted one of her posts and when I feel really low I re read it, it just gives me strength to get through darker days

Sorry my autocorrect is going into overdrive lol

NicoleC1971 · Dec 2, 2020

Helen40 said:
Hello, thankyou for taking time to msg my partner is awesome, I did say he should leave me but he just takes it in his stride, he says I'm the one facing the changes so why should it affect how he feels about me I tried the rnib but the lady I spoke to was quite pessimistic as regards retinopathy as said she could only really talk about changes and gadgets I could look at applying for, I get that really, they can't know every medical condition can they lol, what I really need is someone who is going through this or has in the past? It's a very isolating experience

Hi there. I know it is really scary as this happened to me about 17 years ago though I didn't go blind this is what my family and colleagues feared on my behalf and I was sent info about Guide Dogs by a well meaning friend.
The obvious thing to say first is are you on regular checks with the local eye clinic/screening service? Changes with eyes are usually slow so if you are getting those checks in spite of Covid etc. perhaps you could speak to your GP or a nurse at that clinic who may have a little more time and skill in reassurance.
I did suffer major sight loss after a retinal bleed but this was after a lot of treatment and due to a recent pregnancy with subsequent blood sugar roller coasters/hormones etc. I was told that I was pretty unluck.
I appreciate that my condition isn't totally similar to yours but at my most anxious, my GP did research on my part to reassure my family and i about the surgery I was facing (vitrectomy) which is not to say you are headed that way of course!
You may also be better trying Diabetes UK Careline than RNIB for a sympathetic and informed ear. this is what they are there for.
The other thing to say is that my surgery did result in my coming off the road (nit saved my sight) and at the time it felt like a major loss of independence as I was working and had a small child but I've adapted and partial sight loss is fine (bike, free bus pass and chauffering from my husband who hated the way I drove anyway!).

Alexandra100 · Dec 2, 2020

Helen40 said:
the consultant I have is from a private consultation I paid for at the very beginning and he agreed to see me on the NHS, he's a really nice guy and pretty highly rated in diabetes eye care,

That's really good to know.

NicoleC1971 · Dec 2, 2020

Helen40 said:
I guess I could, the consultant I have is from a private consultation I paid for at the very beginning and he agreed to see me on the NHS, he's a really nice guy and pretty highly rated in diabetes eye care, they just don't have the time to listen to every single worry from each patient do they. He saud it could take 6 months for my eue to clear and there's something called a vitreoctimy that can help, if anyone here has had that it would be great to hear a real life experience pkease

As per my post message me if you want to know more!

(edited by mod)

Helen40 · Dec 2, 2020

NicoleC1971 said:
Hi there. I know it is really scary as this happened to me about 17 years ago though I didn't go blind this is what my family and colleagues feared on my behalf and I was sent info about Guide Dogs by a well meaning friend.
The obvious thing to say first is are you on regular checks with the local eye clinic/screening service? Changes with eyes are usually slow so if you are getting those checks in spite of Covid etc. perhaps you could speak to your GP or a nurse at that clinic who may have a little more time and skill in reassurance.
I did suffer major sight loss after a retinal bleed but this was after a lot of treatment and due to a recent pregnancy with subsequent blood sugar roller coasters/hormones etc. I was told that I was pretty unluck.
I appreciate that my condition isn't totally similar to yours but at my most anxious, my GP did research on my part to reassure my family and i about the surgery I was facing (vitrectomy) which is not to say you are headed that way of course!
You may also be better trying Diabetes UK Careline than RNIB for a sympathetic and informed ear. this is what they are there for.
The other thing to say is that my surgery did result in my coming off the road (nit saved my sight) and at the time it felt like a major loss of independence as I was working and had a small child but I've adapted and partial sight loss is fine (bike, free bus pass and chauffering from my husband who hated the way I drove anyway!).

That is an awesomely positive response, thanks for sharing your experience I guess some days I just think, what good am I to my family if I can't see, when I'm more rational I don't think that way and I'm surrounded by a great family, if I can still see well enough to see them and the world around me I'd be grateful, so so grateful, and a free bus pass eh - every cloud and all that

Helen40 · Dec 2, 2020

Ps, I'm getting regular checks, I've been lucky throughout lockdown that my care has continued! My consultant at Sheffield said he will need to think about vitreoctamy, my next appt is on the 16th

NicoleC1971 · Dec 2, 2020

Helen40 said:
Ps, I'm getting regular checks, I've been lucky throughout lockdown that my care has continued! My consultant at Sheffield said he will need to think about vitreoctamy, my next appt is on the 16th

Good luck and I'd ask some questions when you go in e.g. success rate for the surgeon doing the op? Recovery process/duration etc as this wasn't the easiest process but things may have improved and after all you may not need it.
Mine was entirely successful and 17 years on all is well with no expectation of any further treatments required other than cataracts at some stage.
As you say your family will joyfully support you through this thing because they need you and love you!

Alexandra100 · Dec 2, 2020

Helen40 said:
some days I just think, what good am I to my family if I can't see,

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!

Helen40 · Dec 2, 2020

NicoleC1971 said:
Good luck and I'd ask some questions when you go in e.g. success rate for the surgeon doing the op? Recovery process/duration etc as this wasn't the easiest process but things may have improved and after all you may not need it.
Mine was entirely successful and 17 years on all is well with no expectation of any further treatments required other than cataracts at some stage.
As you say your family will joyfully support you through this thing because they need you and love you!

You've given me something positive to focus on, hearing of how well you are is really great, I happy for you and I will definitely ask those questions, thankyou do much x

So scared I'm going blind

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