'When MS showed up on the scan I cried the whole way home'
Despite living with the debilitating disease Multiple Sclerosis, Larne woman Juliane Keane tells Audrey Watson why she'll still be there on the start line for Runher next month.
Larne woman Juliane Keane describes herself as two people. One is a busy primary school teacher who runs half marathons, and who last year was part of a team which won gold at the All-Ireland Coastal Rowing Championships.
The other Juliane is bedbound, exhausted, in extreme pain, and unable to feel her limbs due to Multiple Sclerosis (MS).
It hardly seems possible to reconcile the two, but Juliane (42) suffers from the relapsing and remitting form of the condition.
Long periods can pass without any major symptoms and then sometimes without warning – but often after an infection most people could easily shake off – she finds herself bedbound.
It was during a relapse earlier this year that Juliane set herself the goal of taking part in this year's Belfast Telegraph Coastal Runher charity event, which will take place on Friday, May 23.
"I had been unwell since Christmas after picking up a virus which I believe led to a flare-up in my MS symptoms," she says.
"I was very weak and found it difficult to walk as my ankles and legs felt numb. It was like walking on sponge and you can't feel the floor.
"There was one day in particular when I was finding it difficult to stay positive about the future. I didn't want to get out of bed as I didn't want to be reminded of the disease every time I took a step.
"That morning I decided to enter Runher as a way to help me concentrate on what I would be able to do once I recovered. And also to raise money for the Oxygen Therapy Centre in Larne, which has helped me immensely.
"During the past two weeks, I have felt much better and am starting to train in earnest for the race. I won't be aiming for a fast time, just a finish.
"There are different types of Multiple Sclerosis (MS). The relapsing, remitting kind means I go into remission between relapses," she explains.
"However remission is not really the best word as I still suffer from numbness, MS fatigue and pain during this time.
"During a relapse, I can feel as if my back is on fire and my spine is raw. Pain pulsates up and down my limbs and every movement is so slow and so very sore.
"Parts of my face can 'freeze' and my legs become so numb it's impossible to get out of bed. The weakness is so bad, I can't describe it.
"It's like there are two very different me's.
"It can be very hard to be positive during a relapse. It's very debilitating. You don't know how long it will last and you just have to wait it out.
"And if you have a new symptom, you worry that you've advanced to the progressive stage of the disease and start to see wheelchairs and your life going downhill.
"When I'm well, it's so much easier to look to the future. I can be the same as everybody else."
Juliane was told she had MS 10 years ago, and took up running for the first time, four years after her diagnosis.
"I needed something physical to focus on," she says. "I live by the coast so also really enjoy rowing – when I'm well.
"Exercise really helps me mentally as well as physically. It allows me to set goals such as the Runher, which gives me something to aim for.
"Last year, I also had a relapse and while recovering gave myself two targets – one was to run the Larne Half Marathon and the other was to win gold at the All-Ireland Coastal Rowing Championships.
"Thankfully, I recovered and finished the half marathon. I was then over the moon to go on to win two gold and a silver at the All-Irelands. It was the best feeling ever.
"I can't stress enough how important I have found exercise to be in helping me cope. My neurologist is always telling me to keep running and rowing as much as I can when I'm well.
"Sometimes when feeling the MS fatigue or when negative thoughts creep in, I look at the medals to remind me of what I will be able to achieve again if I stay positive."
Although she was diagnosed a decade ago, Juliane had some symptoms before that, but never imagined there could be anything seriously wrong.
"I was a very healthy and active child and did a lot of Irish dancing," she says.
"I first started having symptoms when I was 29. One day, I had blurred vision in one eye and thought there was something on my contact lens.
"It got worse and I went to A&E, but they couldn't find anything wrong and referred me to the RVH, where they discovered my optic nerve was swollen.
"I was told that it could be due to stress and usually normal sight returns, and after a few months it did.
"I went back for a check-up and a student nurse casually said, 'I bet you're really worried that you have MS?'
"It had never occurred to me before that. They referred me for a brain scan, but that took three years.
"It was quite frightening, but I think when you are young, you don't worry as much, and I assumed that they were only doing the scan to rule things out.
"In the meantime, I started to have numbness in my face and pins and needles and looking back, I remember that I also felt extremely tired a lot of the time.
"A few weeks after the scan, I went to get the results, still not thinking that there was anything wrong.
"The neurologist told me that the scan showed white flecks on the brain – the scars of Multiple Sclerosis.
"I was stunned because I actually felt very well and I cried all the way home. It was so much to take in."
Juliane's dad passed away six years ago and her mum, Mena, brother Cameron and friends and colleagues have all been wonderfully supportive, as has her electrician husband Martan, also a keen runner, whom she met five years ago.
"We've been married for three years and he has been extremely positive and gives me a boost and reassurance when I'm feeling a bit low," says Juliane.
"When I wasn't well enough to take part in practice sessions for the rowing championship, Martan stood in for me," she laughs.
"I'm doing Runher to raise money for the Oxygen Therapy Centre at Magheramorne, Larne. It's a non-profit-making association, which raises finances through subscriptions, donations and fundraising.
"I know everyone is different but I really believe oxygen therapy has helped my body recover more quickly from a relapse and it has certainly boosted my energy levels.
"I also use their electro-magnetic bed which has helped ease the pain in my legs. The volunteers who work there are really helpful and it's somewhere I can go to talk to other people not just with MS, but with a wide range of neurological conditions.
"I have also found that the website www.over comingmultiple sclerosis.org – very helpful and positive.
"Although the relapses are quite worrying and take around four months to recover from, I consider myself very lucky compared to some other MS sufferers who are at a more progressive stage.
"When I'm well and out running along the coast, I always stop at a wee place behind Millvale, in Ballygally, I call Heaven – because it's so beautiful.
"I look up to Sallagh Braes and over the sea to Scotland and just say a big thank you for being so healthy I can run again, and in such a beautiful place."
How to join in the race...
Women from all over Northern Ireland are getting ready to line up for this year's Belfast Telegraph coastal Runher, now in its third year.
And there is still time to take part in the event, which will see an estimated 2,000-plus women complete the scenic 10k course on Friday, May 23, at 7pm.
If you prefer a more leisurely pace, Join Dame Mary Peters for the Runher 'Walk with Mary' 10k, which will be held on the same evening, in addition to the 10k run. The race sets off from Seapark to Holywood along the north Down coast to Crawfordsburn Country Park.
There will be a post-event BBQ in the country park and a free sports massage from Apex Phyiso.
As usual, the Runher village will have a feast of entertainment to keep children entertained while mums tackle the 10k course.
Entries close at midnight on Sunday, May 18.
To enter and for full information, visit www.runher.co.uk.
Entry forms are also available from Pure Running Belfast, Tel: 028 9032 5151.
Entry is £18 (£20 race week) and includes race entry, Runher technical T-shirt, Runher goody bag and optional bus back to race start (post-event).
There will be extra buses after the race from Crawfordsburn Country Park to Race Start at Seapark, Holywood.