1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2021 »
    Dismiss Notice
  3. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
  4. Guest, stay home, stay safe, save the NHS. Stay up to date with information about keeping yourself and people around you safe here and GOV.UK: Coronavirus (COVID-19). Think you have symptoms? NHS 111 service is available here.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

So scared I'm going blind

Discussion in 'Ask A Question' started by Helen40, Dec 2, 2020.

  1. Helen40

    Helen40 · Active Member

    Messages:
    31
    Likes Received:
    9
    Trophy Points:
    8
    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
     
    • Hug Hug x 8
  2. Qazugc

    Qazugc · Newbie

    Messages:
    3
    Likes Received:
    0
    Trophy Points:
    1
    Aww, i feel so bad. Im here to talk if you need it, but i wont be in here often and i just joined
     
    • Friendly Friendly x 4
  3. Helen40

    Helen40 · Active Member

    Messages:
    31
    Likes Received:
    9
    Trophy Points:
    8
    Thank you for replying!
     
    • Like Like x 1
    • Friendly Friendly x 1
  4. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

    Messages:
    3,439
    Likes Received:
    1,411
    Trophy Points:
    198
    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?
     
    • Like Like x 2
  5. Helen40

    Helen40 · Active Member

    Messages:
    31
    Likes Received:
    9
    Trophy Points:
    8
    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?
     
  6. SMS1

    SMS1 Type 2 · Well-Known Member

    Messages:
    73
    Likes Received:
    15
    Trophy Points:
    28
    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.
     
    • Like Like x 1
    • Friendly Friendly x 1
  7. Helen40

    Helen40 · Active Member

    Messages:
    31
    Likes Received:
    9
    Trophy Points:
    8
    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
     
    • Hug Hug x 1
  8. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

    Messages:
    3,439
    Likes Received:
    1,411
    Trophy Points:
    198
    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.
     
    • Like Like x 1
  9. Dark Horse

    Dark Horse · Well-Known Member

    Messages:
    1,672
    Likes Received:
    923
    Trophy Points:
    133
    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.
     
    • Like Like x 2
  10. Helen40

    Helen40 · Active Member

    Messages:
    31
    Likes Received:
    9
    Trophy Points:
    8
    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
     
  11. Helen40

    Helen40 · Active Member

    Messages:
    31
    Likes Received:
    9
    Trophy Points:
    8
    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
     
  12. Helen40

    Helen40 · Active Member

    Messages:
    31
    Likes Received:
    9
    Trophy Points:
    8
    Sorry my autocorrect is going into overdrive lol
     
  13. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

    Messages:
    2,871
    Likes Received:
    1,752
    Trophy Points:
    198
    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!).
     
    • Friendly Friendly x 2
  14. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

    Messages:
    3,439
    Likes Received:
    1,411
    Trophy Points:
    198
    That's really good to know.
     
    • Like Like x 1
  15. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

    Messages:
    2,871
    Likes Received:
    1,752
    Trophy Points:
    198
    As per my post message me if you want to know more!

    (edited by mod)
     
    • Friendly Friendly x 2
    #15 NicoleC1971, Dec 2, 2020 at 4:24 PM
    Last edited by a moderator: Dec 2, 2020
  16. Helen40

    Helen40 · Active Member

    Messages:
    31
    Likes Received:
    9
    Trophy Points:
    8
    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
     
    • Like Like x 1
    • Friendly Friendly x 1
  17. Helen40

    Helen40 · Active Member

    Messages:
    31
    Likes Received:
    9
    Trophy Points:
    8
    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
     
    • Hug Hug x 1
  18. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

    Messages:
    2,871
    Likes Received:
    1,752
    Trophy Points:
    198
    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!
     
    • Friendly Friendly x 1
    • Hug Hug x 1
  19. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

    Messages:
    3,439
    Likes Received:
    1,411
    Trophy Points:
    198
    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!
     
    • Like Like x 1
  20. Helen40

    Helen40 · Active Member

    Messages:
    31
    Likes Received:
    9
    Trophy Points:
    8
    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
     
    • Winner Winner x 1
    • Friendly Friendly x 1
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook