Swimming in freezing water saves adrenaline junkie from constant pain and inspires her to write a novel

An adrenaline junkie who hails swimming in freezing cold water as her salvation from constant pain after 20 operations because of hypermobile joints that dislocate in her sleep, has written a novel inspired by her experience.

Often in agony growing up, advertising professional Charlotte Leonard, 41, started to think her problems were psychosomatic until she reached 30 and was finally diagnosed with Ehlers-Danlos syndrome hypermobility type – an often inherited condition causing unusually flexible joints.

Prescribed a cocktail of medication over subsequent years, she reacted badly to many drugs and was finally offered liquid ketamine – commonly used as an animal anaesthetic – but had a eureka moment and discovered cold water swimming as a mood boosting pain reliever.

Charlotte, who lives in Muswell Hill, north London, with her entrepreneur husband Nils Leonard, 44, and their sons Jack, 16, Finn, 14, and Noah, 11, said: “Swimming replaced drugs for me and it has worked so much better without any side effects.”

Spending large swathes of her childhood suffering from aching joints which were chalked off as growing pains, her symptoms continued to baffle doctors.

A lover of extreme challenges from skydiving to bungee jumping despite her condition, she said: “At school, I kept getting joint pain and was just told I was growing.”

She added: “I thought it must be what everyone goes through and what everyone feels.

“I was born with this condition, so I didn’t know any different.”

But, even as a child, she remembers the pleasure of swimming in the sea in Cornwall where she grew-up and how it helped her to forget about her pain.

She said: “Wild swimming is a funny term to me, because I’ve always swum in the sea and in rivers.”

Refusing to let her persistent injuries – which saw her break fingers, fracture her elbow ice skating and break her foot amongst other things – hold her back, she continued to enjoy sports like skiing even though she has also broken her arm enjoying the winter sport.

Charlotte once ended up with a plaster cast on her entire leg after simply stubbing her toe, because her fifth metatarsal smashed.

She said: “I’ve had 20 general anaesthetics in the last 15 years when I’ve had operations to fix things I’ve broken like my elbow, where I had three surgeries.

“I’ve broken quite a few bones just sledging down the road near my house.

“I stubbed my little toe on a door and ended up with a plaster cast up to my knee.”

After a succession of specialists were unable to give her a specific diagnosis, fearing her aches and pains were psychosomatic, Charlotte even consulted a psychiatrist when she was in her 30s, who assured her that her pain had a physical cause.

She said: “I’d seen a huge number of doctors over the years who couldn’t tell me what was wrong, but I knew something was.

“I started to think it was all in my head, because I couldn’t explain it. I went to see a psychiatrist because I just wanted some clarity.”

She added: “But I remember them telling me it was medical, that it wasn’t psychosomatic.”

By the time she had her third son, Noah, in 2011, Charlotte’s pain became unbearable and she went to see a specialist at Charing Cross Hospital in London.

She said: “After I had three babies my body wasn’t in a good way, so I couldn’t ignore it.”

She added: “I was in more and more pain to the point where I needed to find a solution.

“My joints would ache and dislocate really easily. If I simply rolled over in bed my shoulder dislocated.”

After investigating her family history, a doctor at the Pain Clinic at Charing Cross Hospital discovered she had Ehlers-Danlos syndrome.

Charlotte said: “It was so difficult to deal with that because I finally had an answer but it wasn’t the one I wanted, as it’s incurable.

“The treatment is basically just physio and pain management.

“I remember being told that I could never do anything like skiing or skating again.”

Despairing at the thought of a lifetime taking heavy painkillers, many of which triggered reactions, she felt thoroughly depressed.

She said: “I’m allergic to a lot of drugs. I spent the first year after the diagnosis trying absolutely everything and I would end up with a rash, or I’d fall asleep somewhere I shouldn’t.

“The medication was creating even more problems.”

Further dismayed as she read stories of other people with the condition, she feared her future looked bleak.

She said: “I really like adrenaline, sports. If I can throw myself out of a plane or bungee jump I will. But with my condition that’s become harder and harder.

“Doing something that feels a little bit risky, just feels good.”

She added: “But I kept reading stories about the condition and it sounded like a miserable life. I joined a Facebook group and so many people progressed into being in a wheelchair.”

Her final turning point came when she was offered liquid ketamine in early 2014 to kill the pain.

She said: “I was in so much pain and I couldn’t take any morphine because of horrific side effects as I got rashes all over my body. I was told I could go to hospital for regular epidurals, or have liquid ketamine.”

She added: “That’s not something I wanted to do. I needed to find other ways to cope.”

Determined to live her life on her own terms, remembering how she would “lose herself” and her worries as a child, when she swam in the seas and rivers in Cornwall, she wondered if this could be her salvation.

So, in 2014, from September onwards, once there was a nip in the air, she started swimming in Kenwood Ladies’ Pond on Hampstead Heath in north London.

Thus her obsession with cold water swimming was born.

She said: “I always swam during the summer, but it wasn’t until after my diagnosis, once my youngest son started nursery, that I found more time to go to the ladies’ pond.

“I was struggling to deal with all the medical appointments, so I started swimming with a friend of mine.”

She added: “We used to go together over the summer, but we usually stopped by September, as it was cold. Instead, though, we decided to keep going.

“We went three times a week and we never stopped.”

Reinvigorated by her surroundings and the challenge of swimming in the chilly water, she found her adrenaline pumping again.

Suddenly her world opened up, as she delighted in taking her family to the River Thames outside London, the Irish Sea and to an array of rivers, lakes and even quarries in Cornwall, where she would swim to her heart’s content.

As well as recreating the buzz she had experienced from extreme challenges, through cold water or wild swimming she found a community of women who joined her in what has now become a popular activity.

She said: “Having medical conditions can be so isolating, so I found swimming a wonderful way to come together with likeminded people.”

She added: “It was so nice to be in an all female community.

“It got to a point that if we saw snow outside we’d be even more excited about getting into the water.”

And Charlotte is far from alone in her love of swimming in cold water.

The Outdoor Swimming Society in the UK now boasts more than 100,000 members, while 7.5 million people in the UK enjoyed open water swimming in 2020, according to Sport England.

While Vindication Swim – a biopic about Mercedes Gleitze, the first woman to swim across the Channel in 1927 and one of Charlotte’s heroes – set for release later this year, has also turned the spotlight on female cold water swimmers.

Charlotte said: “I am so inspired by women like Mercedes Gleitze, and all the women who swim in our pond in Hampstead and across the world.”

She added: “I always felt amazing when I swam, but swimming outside in the winter is just magical.

“Staying active is so important to me, as it’s part of my identity, without which I feel completely lost.

“Swimming has made me feel like the old me again.”

As well as lifting her spirits, swimming has replaced her pain medication.

She said: “It makes me feel so much better that I don’t have to take painkillers, which is so positive.”

And using the way in which swimming has helped her to combat her grief over the life she has lost as a springboard, she has been inspired by her experience to write a novel, Afterwards, which is being published on April 14 by Simon and Schuster.

It tells the story of a widow who finds her husband dead and travels to Cornwall to unravel the truth about what happened, where she meets cold water swimmers who support her through her grief.

Charlotte said: “I understand the support the cold water swimming community provides.

“My own personal support network comes in the form of family, a very close group of friends and the cold-water swimmers at Kenwood Ladies’ Pond.”

She added: “The act of cold-water swimming itself has also provided me with a huge amount of solace over the years and has helped me navigate many of life’s challenges, including grief.

“This enabled me to draw heavily on my personal experiences of swimming when writing the book.”

ENDS