Trying to keep positive, how is it possible? - Macular Society

Macular Society
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Trying to keep positive, how is it possible?

01776
01776
18 Replies

Hello everyone,

As you can see, I gave myself a number, which with hindsight rather makes me look as if I came from a concentration camp! Wish that I had chosen a username instead.

I was diagnosed with dry AMD, around last October, 2017. I was shocked to the core because I was not aware of any visual changes. I went through many mental scenarios, the very worst ones, plus many nightmares which shook me awake from my sleep. I decided to pay privately to get my condition staged, and now am due for another check up. So, I am naturally anxious as to whether there have been any changes. I do take courage from all of you regulars on this site, especially when I feel down about the possible outcomes from having to live with this insidious condition.

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01776
01776
in reply to Hidden

Hi Kevinaki,

Thanks for your reply, I have joined the Macular Society and have plenty of informative literature from them. They are very helpful indeed. However, it is sometimes more the emotional side that needs to be addressed and I have been grateful for their counselling services. I do hope that you were not around in 1776!

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eyesright

Hi, it can get very depressing. I just remind myself of what I have rather than what I don't or what I might lose.

Lost many friends and family but I'm still breathing. Got a brain damaged relative but I can still function independently. Luckily can still read - that will the biggest test for me. Hope we all get some new treatments before things get worse - but we are still better off than years ago ( no treatment or support for my hubby then).

I'm thankful every day for the macular society. A British charity giving support to sufferers around the world, whether they declared independence or not lol x

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01776
01776
in reply to eyesright

Hi Eyesright,

Thanks for your reply, I know from reading your posts just what you have been, and are still going through. I do admire how you manage to keep other peoples' spirits up despite your own battles. I do have a daughter with an incurable auto immune disease which, at one time, left her wheelchair bound. I also suffer from a heart condition which does not help matters. However, we have no choice but to carry on, but having the support of the Macular Society, plus, support from the members of this forum, makes it more bearable. xx

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pinkperfection

Hello eyesight Thank you for being so positive. Like you I really want to be able to keep reading. This along with not being able to drive would be my worse nightmare. At present my left Eye is fine and I dread any thing happening to that one. Had a second injection of Eyelea last week as Lucentis did not appear to help in fact it made things seem worse. Just hoping Eyelea will stabilise me. Like others have report I had black discs told they were bubbles very scary but went after couple of hours.

Hope all goes well for you. x

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RP1944

Hi pink perfection,

I love your username!! Yes the worst outcome for me would not being able to read or drive as well. Hopefully new treatments will arrive eventually so we don't just have to rely on injections. Eyelea seems to work for most people, hope it does for you as well.

Best wishes.

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IvyRose2

The eyelea is helping me so far just had the tenth injection, there is less fluid. I also take the macushield, wear protective sunglasses, keep fit and healthy as I can. I wish you all the best for your treatment and I'm hoping they will come up with eye drops instead of injections soon.

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pinkperfection

Thanks for your reply good to hear that eyelea is working for you. Hope it will show some improvement for me soon or at least stabilise things. As you say eye drops would be wonderful and surely cheaper for THE than injections.

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Richard_44

Hi 01766

Like you, I decided when I was diagnosed with Dry AMD just over 4 years ago that I wanted to know how things were developing, so, I have my eyes scanned each year. I have recently had my annual check and again this year there is little ,if any , change! I am still able to drive legally!

As a 74 year old, I consider myself to be very fortunate, however I don't feel that it is all down to luck - I think that lifestyle is very important.

I eat healthily (plenty of fresh fruit and vegetables with blueberries every day), I take an AREDS supplement every day, I go out for a few hours each week on my bike with two of my friends, and I try to think as positively as I can. Things could be a lot worse!

I wish you well!

Richard 44

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01776
01776
in reply to Richard_44

Thank you Richard for your reply. I just hope that my next eye check, in two weeks time, does not show any advances with this disease. I always feel quite worried when I have to visit the eye specialist. Hopefully, all will be well.

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2468G

Hi 01776.

I also opted for numbers and an initial. Very unimaginative of me I suppose.

Like eyesright and others on here , I try to concentrate on the good things in life and make sure I have lots to look forward too.

I have elderly parents and care for other family members too which can be hard and time consuming. I need to be able to continue doing this so hope my other eye remains good.

I exercise and eat healthily with the odd treat and glass of red wine. As well As the support on here I have great hubby, family and friends. All things to be happy about. Of course when you receive news that the scan shows a new leak or no improvement it knocks you back a bit but hopefully each injection brings improvement again.

Best of luck to you. 2468G

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01776
01776
in reply to 2468G

Hello there, thank you for replying to my post. I am trying not to despair, and am trying to cultivate a more positive attitude. However, I do not have any family support and am a carer for my husband who suffers from bi-polar disorder. I have a whole lot of family problems, and unfortunately, the family always expect me to help them out.

I, too, have an occasional glass of red wine, also eat plenty of green vegetables, try to exercise, but I feel like we are all just acting out a theatrical role by obeying these unproven preventives. I have another eye check in two weeks time and am just hoping that nothing has changed since last October. I do hope that your injections continue to improve your eyesight as no one should have to endure the misery of macular degeneration.

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2468G

Hi 01776

I feel for you. When you have many problems and no proper support it is tough emotionally. If you are expected to help your family out surely they should be there for you too. It shouldn't be one sided.

Have you joined the Macular Society? They can provide you with good advice and support.

My best wishes to you. 2468G

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Hidden
Hidden

I have dry md and distortion in one eye and have had to stop driving which has really had an impact on me and I do not feel positive anymore about my condition, even though I have a healthy lifestyle I think it is down to luck. As RP1944 said "Yes the worst outcome for me would not being able to read or drive as well". When I go to the hospital to have my eyes monitored I am the only person in the waiting area of my age, all the other people of about my age are with their elderly parents.

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2468G
2468G
in reply to Hidden

Hi candidate

Losing the ability to drive is a terrible blow. I dread that happening. It's a cruel disease. How old are you? I'm 53 and like you always the youngest at the clinic. 2468G

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Hidden
Hidden
in reply to 2468G

How old were you when you were first diagnosed 2468G? I am sorry if you have mentioned it earlier, but I must have missed it. I was 54. I didn't know what md was when I was diagnosed. I was told that distortion was one of the signs of wet md and told I could be treated then told I couldn't. Until I started having having problems with distortion I think I must have thought I was invincible. It is a cruel disease that I can't forget I've got.

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2468G
2468G
in reply to Hidden

Hi candiedate

I was diagnosed with CNV earlier this year aged 53 due to myopia. It has the same symptoms and affects the macular. I noticed distortion and it was caused by fluid leaking. I have been fortunate in that injections of Eylea have dried up the fluid. Unfortunately after stopping the injections I had another leak so have had to resume with them. Not sure how long I will need them for now. Another scan in a week or so.

Macular disease is cruel as you can't forget about it. Once the damage is done you are constantly aware of it. I feel for you and you are not alone. 2468G

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Hidden
Hidden
in reply to 2468G

Hi 2468G

If you want to you can pm me. We can chat to each other.

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