This horrible eye disease is so scary! - Macular Society

Macular Society
3,446 members1,772 posts

This horrible eye disease is so scary!


Hi fellow sufferers, I'm daily checking my eyes and feel convinced the wet macular degeneration is getting worse, the wavy lines are awful. I've now had 4 injections and don't feel any improvement has happened. I'm terrified that my left eye which has the dry macular will turn into wet, I'm becoming obsessive about it! Am I the only one that does that? ❤️

10 Replies

Hi squinty, no you're not the only one x I think it's normal to get a bit obsessed at first. You just need to relax a bit, stay vigilant, but don't let it become the biggest thing in your day. I so totally get the fear of what might happen but you're doing all you can so don't let the worry of an unknown tomorrow spoil the potential of a good today. After all, no one anywhere knows exactly what their future holds.

It is disappointing when the first round of inj doesn't do the job but there are people on here who have stabilised after a few more. Give it a bit more time.

Also, I find my vision varies throughout the week getting worse then better depending on time of day etc - I use the amsler once a week now not daily. I do notice it getting worse in week 5 but I think I'm just one of those who be needing inj every month forever lol.

At the risk of being morbid but trying to be practical I am gathering memories of enjoying looking at lovely things so that if it comes to it they will sustain me (always daydreamed so my minds eye is pretty good lol).

Take care, enjoy Xmas, 2017 will bring new opportunities x

Please dont be anxious. The first month I was diagnosed with wet AMD , I was having panic attacks, depression, it was awful. Gradually I am learning to accept it, but that damn grid, if I look at it everyday, makes me stress out.!!! EYESRIGHT is correct in saying our vision in these eyes change a lot. Some days my vision is ok other times it gets really wavy, or I cannot see color. Other days when I focus on something my central vision is more gray. My doctor says it doesn't change like that and I should put more wetting drops in my eye?! We just have to accept this, I guess. I HATE that grid so have put it away. I know when my eye is going " haywire" and it is time for a shot and I have accepted the fact that six months ago when I was diagnosed with this, my eye was never going to have normal vision again, it's a drag but the more you think about it the worse your anxiety is going to get. Hang in there like the rest of us,'there are going to be good days and unfortunately bad days. I am so glad I found this website, because unless you have this disease, talking to other people about this is useless and I was living in silence with it until I found this place.

in reply to Uddyeller

You are spot on, good advice

Hello everyone,

I am also in the same situation having had three lucentis injections in my right eye with no obvious improvement & terrified about getting it in my left eye. It is really difficult managing at work with this problem so if my left eye gets it I don't know how I will manage.

I really miss not being able to enjoy reading, are any of the kindles any good?

It's really good to be able to talk with you all in very similar conditions,

Let's try to enjoy our Christmas & keep on one day at a time

in reply to p-knud

Hi, I had a Sony ereader before my eye prob(best battery life) and its still good now as can change font size although overall screen size then becomes a bit small so lots of page turns lol

Hi several years ago I was feeling like you then my son found Macular Society for me. They have really helped & being on this site has also been a real bonus. Everyone helps each other.

I've had a spell in hospital recently due to damage done to my kidneys by a drug given for reflux, Omprazole, that made me very sick till it was stopped. I have noticed a very bad effect of the steroids I have to take to try to help my kidneys as they are scarred now.

My 'good' eye treated by Lucentis years ago is misty & the eye being treated by Eyelea is now very bad. At a recent eye test the optician said this will clear up as I stop the steroids. I am just glad that I have an excellent Consultant at my eye clinic to watch this for me.

Without the help of all on here, the Macular Society & the Clinic I would have become more depressed.

So please do not give up, there is a light at the end of the tunnel & it is not a train, so much research going on must come up with a cure soon!

Keep hoping & hugs for you, keep in touch!


Dear squinty,

I am sorry to read your post. No, you are no the only one who does that.

The impact of the diagnosis of any eye condition is generally compared to experiencing bereavement. Individuals frequently go through very similar feelings and responses and in no set order. We do have a free telephone counselling service which can be particularly useful when an individual is initially coming to terms with the diagnosis. Please contact us for further details if this is of interest.

It may also be helpful for you to give us a call for a general chat.

Our helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Kind regards,

Macular Society Helpline

Hello squinty,

I only check my eyes once a week with the grid, only if I notice a change in my eyes. it helps me NOT to think about going blind in both eyes. I don't need anymore daily stress in my life.

I've had some abdominal pain for 2 years and I can't find a Dr. to tell me what's going on and so my focus what constantly on my stomach and the PAIN GOT WORSE, so I've done some relaxation sessions (that I got free from the app store on my phone) AND my pain went away and I fell asleep! So, maybe relaxation will help you FORGET about your eyes when you're feeling down. Life IS good, find everything GOOD in you're life and focus on those. Keep in touch my friend

Dear, dear squinty. x I am so sorry you are taking it so hard. I do understand. And although the wonderful people on this site are all sharing this horrible affliction at various degrees and are extremely supportive and helpful - they have helped me a great deal - we are still individuals who have to learn to accept and cope with it in our own way and in our own time - in the best way we can. In my early days of diagnosis I even had suicidal notions. I thought that if the day comes that I loose my central vision altogether then there is no point in being alive. I don't think that way anymore. Just like eyesright said already, I too am gathering memories of pretty things and wonderful sights on my walks and will hopefully do so in 2017 when I have volunteered to lead groups on 15 of our walks even though I have vision problems when the sun is too bright despite sunglasses and sun hat or the day is too dull.

I still check the amsler grid daily when I look at posts, but mainly out of curiosity rather than concern, and once a week I check my eye chart for visual acuity. My VA varies anywhere between 20/50 and 20/80, a vast difference I cannot explain. And like you, I feel that the injections have not made things better - if anything, I feel my vision is slightly worse. I am sure we have to give it more time and trust in our clinics. They will be doing what is best for us.

Try to relax, squinty - easier said than done, I know - and try to make the most of the festive season. Sending you a big, big hug. xx ayayay80

Hi Squinty all good advice given here i find , think we all have a bad day sometimes , thank god for this treatment, wet AMD in left eye for 2 yrs, and found in right eye 3 mths ago, i am now very aware of anything upsetting "good eye".....dont be afraid to ask questions at clinic......((((")))) x

You may also like...