Due to a rare condition, teacher Vanessa Hilton has to spend 99 per cent of her life lying flat – but now an appeal to help her have greater independence in gaining traction. PETER BARRON reports

THERE are times we all like to lie down on the settee when we’re not feeling well – but for Vanessa Hilton, it’s become a way of life.

For the past 12 years, she’s had to spend 99 per cent of her life either on her back or side, knowing that being upright for more than a couple of minutes is too dangerous.

“You never know what’s round the corner, do you?” says 41-year-old Vanessa as she lays flat in the front room of her Darlington home, giving her friendly pet house rabbit, Truffle, a gentle stroke under the chin.

“My life was turned upside down in an instant,” she adds, looking back to the January day, 12 years ago, when she was working in her dream job, as a science teacher at Branksome Comprehensive School and suddenly felt unwell.

“I was planning lessons for the next day when my eyes started hurting, and I thought it was just a bad headache that would go away,” she recalls. “I went home, got into bed, then couldn’t get up the next  day because I was in such excruciating pain.”

After a week in Darlington Memorial Hospital, followed by scans at The James Cook University Hospital, in Middlesbrough, she was diagnosed with intracranial hypotension.

An extremely rare condition, it meant her spinal fluid was leaking, and being upright for any length of time added to the pain, as well as making her over-sensitive to light and sound.

Twelve years on, Vanessa describes herself as ‘a guinea pig’, with doctors – first at Addenbrooke’s Hospital, in Cambridge, and now Royal Stoke University Hospital – trying to find an answer.

The treatment has included having stents fitted around her brain to lower the blood pressure that’s pushing the spinal fluid.

“So far, nothing’s worked, but I’m doing my best to be positive, even though it gets me down at times,” she admits.

Despite the daily challenges she faces, and the need to take medication every day, Vanessa is determined to make the most of her life, with husband Paul – a mental health nurse – by her side. They married in 2007 and she describes him as “an absolute star”.

During the pandemic, she put her time to good to use, helping Darlington Support to co-ordinate a team of volunteers who were shopping for shielding people. Pre-Covid, she helped Elim Church to organise annual fun days at North Park.

Always an active person, Vanessa has developed a love of swimming – something she can do while remaining horizontal.

She’s a regular in the Dolphin Centre pool and, during lockdown, she discovered Darlington Wild Swimmers, with the river at Gainford becoming a favourite place to escape.

Paul drives her there while she lies on the rolled-down passenger seat, then they use an electric wheelchair to get her to the water’s edge as quickly as possible before she’s able to start swimming.

“I’d done some swimming in the Lake District before I joined Darlington Wild Swimmers and I just love it,” she says. “It gets my muscles moving, it’s good for my heart and lungs, keeps me in reasonable shape, and helps my mental health too.”

Vanessa had an operation six weeks ago and hasn’t been able to leave the house since, but the recovery period is nearly over, so she’s looking forward to her first wild swim since the surgery.

“I’ve really missed it because I just love that feeling of being outdoors. I can’t wait to get back to it – not long now,” she explains.

She also gets close to nature by growing fruit and veg on her nearby allotment, lying down on a path so she can help with the weeding, sowing seeds, and harvesting the produce. On top of that, she acts as volunteer secretary for the Hummersknott Gardeners’ Association.

As unlikely as it might seem, she’s even been known to have a lie down in the back garden chicken coop, so she can have a close-up chat with her pet hens: Henrietta, Wyan, Dotty, Saphy, Cloud 1, and Cloud 2.

Holidays haven’t been easy but, every few years, Vanessa and Paul have been able to get away to a Christian campsite in Le Vendee, in France.

More than 700 miles is a long way to travel when you’re flat on your back but, with Paul doing the driving, and a cabin booked for the ferry crossing, it’s manageable.

Once there, Vanessa is able to relax by sunbathing, playing boardgames, swimming, and even lying down in the front of a kayak while Paul paddles at the back.

Back at home, she has help from Emmie, a personal assistant provided by Darlington Borough Council’s adult social services, but she craves greater independence.

And that’s why a fundraising appeal has been launched to buy her a recumbent tricycle, which would enable her to get out and about from her home in Hummersknott Avenue, while staying as horizontal as possible.

“The hardest thing is having to rely on other people all the time. I can’t contribute as much as I’d like to, and there’s always that feeling that I’m being a burden to others,” she explains.

“With the tricycle, I could not only get some exercise, but visit my friends, pop to the Post Office, and even get to the Dolphin Centre to go swimming. It would be liberating – life-changing.”

The couple have sourced the perfect bike, costing £7,608 and 46 pence (Vanessa knows the price down to every penny). Darlington Lions Club has made a donation of £500, the Arctic One Foundation has added £400, and Vanessa’s GoFundMe page has reached £2,465.

She’s even raised funds by completing a swimathon, covering the 21-mile length of a Channel swim, with sessions in the pool, lakes, rivers and the sea.

The appeal is going swimmingly, but there’s a long way to go, and Vanessa is eager to get on with living her life to the full.

“I’d love to climb a mountain – but I suppose that’s a dream for another day,” she smiles, as she looks up from the settee.

  • If you’ve been moved by this article and want to support Vanessa, go to www.gofundme.com and search for Get Vanessa Cycling Again