“I’m not just running for myself, but for the Macular Society and others with macular disease”

When Lucy was diagnosed with macular oedema four years ago she feared she wouldn’t be able to enjoy life in the way she could before.

The Cardiff-based musician had woken up one morning with a floater in the middle of her vision, aged 34.

But finding support in the Macular Society and knowing research is being funded to find a cure she is running the London Marathon to support others facing the uncertainty she felt.

Lucy said: “It was like looking through a snow globe and it was really quite shocking. I was anxious, I was upset that overnight my sight had just changed.”

An OCT scan at her opticians highlighted fluid building up in the back of her eye and she was referred to hospital where she received her diagnosis.

"This is my life, this is my vision now"

Lucy said: “I was told it was fairly small, that I would be monitored but I was still so anxious and really quite distraught to be suddenly going through that. I found myself not wanting to go outside, I hated the light and everything was blurry. It was all very anxiety inducing.

“I'm someone who has always loved going outdoors but suddenly, I just couldn’t bear it. I wore dark glasses all the time, even indoors and I changed my décor so it was darker to make living in my home more bearable.

“It was a really awful time but the worst part of it was being told or just reading online that there is nothing anyone can do. That was just horrendous.

“I thought ‘this is my life, this is my vision now and I can't enjoy life in the way that I could before all these vision changes started to occur.’ That was so hard.”

Lucy explained how the first year and a half was the hardest, as she struggled to adapt, not only physically but mentally too.

She said: “I’ve improved a lot but those first 18 months I really struggled. The floaters flying around were such a daily distraction, and blocked my vision. I’ve had to learn to live with this change and that’s been the hardest thing.”

Adapting to changes in life

For Lucy, now 38, it was realising that while she couldn’t change the condition she has, she needed to change how she was responding to living with it.

She said: “I've adapted in various ways. I tend to use dark mode now on any digital devices, I filter out the blue light on my laptop and my phone. People are always very surprised at just how yellow my screens look but that works well for me.”

She added: “I’ve adapted physically, but I think the biggest shift for me has been mentally. Again, changing my reaction to having this diagnosis has been the biggest thing.”

Lucy found counselling a positive experience, something which her brother Matthew had experienced through the Macular Society after he was diagnosed with wet age-related macular degeneration (AMD).

She said: “I knew about the charity because of Matthew, and going through the changes myself I was so anxious, confused, desperate, frustrated and lonely. And there was this sense of where is the cure? Where is the research?

“It was such a breath of fresh air when I looked at the Macular Society website and I realised that there is actually a charity out there which recognises the need for macular-related research, and is funding all sorts of projects to find a cure for people who are suffering from such worse eye conditions than I am.”

London Marathon 2026 - fundraising for a cure

Motivated by the support it offers people, Lucy has set herself a target of £4,000 for the Macular Society. In 2025 she arranged a cake sale at work, organised Christmas carolling, hosted a concert in February and on Sunday, April 26 she will be running the London Marathon for the very first time.

She was encouraged to start running by a friend, who inspired her to complete the Cardiff Half Marathon in 2023.

Lucy explained: “Before I had my eye problems I was not a runner at all. I didn't even own a pair of running shoes, although I loved walking, particularly hill walking. As I said, after my diagnosis I really didn't want to go outside because of the black mass in my central vision.

“I had the best time running the Cardiff Half in 2023, it was an amazing race in my home city. I had very much caught the running bug and it was such a mental relief. I continued to sign up for other races, Parkrun and all these things have allowed me to change my mindset and have made me feel physically fitter too.

“Then I thought, could I run the London Marathon, and why not fundraise for the Macular Society at the same time? That gave me such a feeling of excitement, even before I had filled out an application. Now I’ve been selected and the rest is history. I can’t wait for it.

“Running has been therapy for me, it’s certainly had a therapeutic benefit on my mind and body. I still have the same floaters, the same blurry vision as I always have, but it’s my response which has changed. Rather than focussing negatively, I channel that energy into my training instead.”

"I'm doing this for other people too"

Lucy is now hoping all her preparation will stand her in good stead for the main event.

She said: “It will mean so much to cross the finish line. I’m not just going to be running for myself, but for the Macular Society and that means so many people affected by macular conditions.

“It’s a huge community who are going to benefit from money which is being raised. I think back to 2022 and the depths of despair I was in. If I knew then that there was someone out there fundraising to make a difference, I would have been so grateful and encouraged by that as well.

“It's going to be a huge personal challenge but at the same time I'm doing this for other people too, who are desperately wanting a cure for their eye condition.”