A Torquay woman with multiple sclerosis (MS) is embracing her impending 60th birthday by taking on physical challenges to fundraise for a charity which helped her cope with her life-changing diagnosis.
Tracey O’Keefe, 59, a nurse, has set herself the ‘Big 60 Swim Challenge’ which includes swimming in 60 different venues in the UK, many of them outdoors and ice-cold during the winter months, despite her disability.
It was April 2022 when Tracey first noticed something wasn’t right. “I was on holiday when the left side of my face went numb,” she explains. After a trip to A&E, a suspected mini stroke was ruled out, and she was referred for a scan. This revealed a possible brain aneurysm – but that wouldn’t explain what had she’dexperienced. A further scan, and piecing together other symptoms with a neurology consultant, led to Tracey being told they were fairly sure she had MS, but more tests were needed. “That was 08 September – I remember it as it was the day the Queen died – and I walked out of the hospital feeling absolutely shocked and numb. Not only did I have an aneurysm, but I might have MS.”
But it wasn’t until January 2023, 21 months after her initial A&E trip, that she was finally diagnosed with multiple sclerosis.
It was a disease that Tracey knew all too well. “My experience of MS was of people who were very ill,” she explains. “I’ve been a nurse since 1985, including three and a half years as a neuro intensive care nurse, and 18 months as a neurology ward sister. Working in hospitals, you tend to see the worst of the worst. You don’t see people while they are well, whatever their condition. Add to that the much more limited treatment options back then, and I was filled with so many worries. My mind raced to imagine wheelchairs, incontinence, and me eventually ending up bedridden with pressure ulcers – I had negative nurse panic!”
Tracey reached out to MS-UK, a national charity that helps people with MS live healthier and happier lives. “This charity has helped me so much,” she says. “I joined an 8-week mindfulness courseand it was a revelation! Being able to share with others who understand, being able to process thoughts in a different way, and being able to be part of an on-going support network has been game changing. I have met people who say MS changed their life for the better – I am not quite in that mindset yet – but just being around people like this has helped me reframe this twist in my life in a positive way.”
Tracey counts herself lucky that currently her mobility is not affected unless she has a bout of fatigue. “When fatigue hits, my legs feel like wobbly lead!” she says. “The rest of my symptoms are sensory. My face numbness comes and goes and changes to pain – I’ve only recently been to the dentist with what I thought was toothache, but it was nothing to do with my teeth!
“If I’m tired or under pressure, I get episodes of chest pain which can feel scary, but I now tell myself that it is just my MS and it will pass. I also get weird feelings in my eyes, but thankfully my vision is not affected. I often get a very itchy arm – I can be free of it for weeks and then it is back with a vengeance. I can scratch it until it bleeds, and it can literally consume all my thoughts.
“However, I am an optimist, and a ‘get on with it’ type person with resilience and an inner dialogue of positive self-talk around most things. This helps me switch from negativity to thinking about how I can deal with what has happened and realising that there is nothing I can do to turn the clock back, and the only way forward is to learn more and adapt.”
Now six months into her challenge, as well as swimming in 60 different locations, Tracey is aiming to complete 600 swims, achieve six awards or medals in six different countries, and swim 6,000 yards a week averaged over the year. “One way I have decided to approach this MS ‘thing’ that is now part of me, is to stay strong, active, and mentally positive. It’s not always easy, but my lifeline has been swimming. Living by the sea, I am so lucky to be able to have the vast and beautiful ocean to plunge into, reminding me that life and the world are amazing.
“I am just about on target, but winter is looming. I hope to do as much as I can in the open water – sea, lakes, rivers – but I also know that I will need to resort to pool swimming to keep up the distance in the cold weather, despite swimming all year round outside. Although boring, this will keep me fit anyway!”
So how does she manage to take the plunge in the freezing sea first thing in the morning when many of us are struggling to get up from under a warm duvet? “I just don’t think!” she says. “It is embedded in my routine and regardless of how tired I am, I get up, throw on my swimsuit, grab my bag, ready packed the night before, and leave.
“Mornings are definitely easier than trying to swim later in the day when I have had time to feel the cold and my body is more physically tired. However, I know that the swimming with invigorate me and ‘reset’ me – the cold, the exercise, the chat with friends. It isn’t always easy to get in, particularly standing looking at the sea on a cold, dark, wet morning, but we moan a bit, complaining at the edge, and then we spur each other on, confident and sure that a short while later, we will be saying “well, that was lovely, wasn’t it?!” and “not too cold at all!” Very occasionally, I will listen to my body, but it has to be extreme and overwhelming exhaustion – mild fatigue won’t stop me as I know the swimming will help. It may just shorten the time in the water. So far, I have never regretted a swim!”
Visit Tracey’s fundraising page to help her reach her goal – https://www.justgiving.com/page/big60swim
Visit MS-UK’s website at https://ms-uk.org
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