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Lurgan woman with MS uses written word to support herself and others

'It's personal, it's selfish, it's about your own mental health and wellbeing and for you to learn how to cope with this thing called life'

An inspirational Lurgan woman living with Multiple Sclerosis (MS) is freeing her mind and taking control of her situation by harnessing the power of movement and the written word.

Julie Ann Purdy (50), was diagnosed with MS just five years ago in 2019. However, she says her symptoms started as early as 2017.

Speaking to Armagh I, Julie Ann describes a “cumbersome and convoluted” journey to diagnosis, yet since diagnosis she has entered into a journey of discovery that has not only enabled her to find herself – but also a coping strategy that has become a passion.

It all began when a colleague – exasperated by Julie Ann’s constant vision complaints – persuaded her to book a trip to the optician.

What she initially brushed off as the tired eyes of an overworked and overstressed 21st Century mother and full-time employee was soon revealed to be much more serious.

Said Julie Ann: “I just thought my eyes were tired. I had a full time job – very busy, very stressful – on the computer. I was a busy woman in my personal life and I just thought my eyes were tired.

“A work colleague brought it to my attention that I’d been moaning too much for too long and needed to go to the optician and it was there that an optician made a referral to Eye Casualty in the Royal Hospital.

“From there I was referred to Ophthalmology in the Royal Hospital, then tests were carried out and MRIs and I was changed from Ophthalmology to Neuro-Ophthalmology.

“It was not my eyesight per se, it was a blockage in my nerve which is a neurological issue and from there it was a referral to pure Neurology and that all took two years. It is now what I know to be optic neuritis and so the clarity in my eyesight is diminished.”

These referrals were only the start. In 2019 Julie Ann then contracted a common cold that ‘floored’ her.

“My legs felt like pencils that would break under the weight of me. You could hear the weakness in my voice and that was associated with chronic fatigue.

“There was then enough things on my list to say, ‘Yes, we can now give a diagnosis of MS’. Yet nine months before I had been told by a consultant that I categorically did not have MS,” said Julie Ann.

Today, Julie Ann lives with all the classic symptoms of MS including bi-lateral leg weakness, bi-lateral pain, clumsiness and coordination problems, chronic fatigue and optic neuritis.

These symptoms have led to a total overhaul in the way she lives her life. Her twice daily gym visits are no more, her frequent runs ditto. All on doctor’s orders, which was, for Julie Ann, a tough pill to swallow. But she says she’s learnt to be grateful.

Julie Ann credits a simple pen and paper with helping her to find and embrace her inner strength.

Explained Julie: “Journaling was brought to my attention when MS Society NI would regularly run events. During COVID anyone on the mailing list with MS got offered a six week journaling course in the evening via a zoom call. I was isolated and only went out for doctor’s appointments.

“I found it to be the most beneficial thing ever in my life in terms of looking after my own mental health. It allowed me to look at the demons that had taken up residence since I had taken ill.

“It helped me come back to being grateful for what I had and reducing the noise between my head and heart. The head can get exceptionally busy and you need an outlet and that outlet to me was a pen and paper. Whether or not I could write sentences, only words or I scribbled on a page to get that frustration out. It gives you that opportunity for mental clarity.

“MS is out of my control so why do I beat myself up about it? What’s in my control is that I count my blessings every day. Yes I have pain in my legs but I wake up nonetheless and that’s the blessing. I have a roof over my head, an exceptionally supportive husband, I have a great support network. I have to count my blessings.”

Julie Ann celebrating her milestone 50th birthday

Julie Ann has now started her own group called Triple M – which stands for Minding My Mind – where she encourages others to take up what she regards as the “cheapest therapeutic tool”.

“It’s a game-changer. I get so passionate whenever I reflect on Julie Ann three, four years ago when a knife being dropped would have been an explosion inside,” she added.

“I am now able to ask myself what I’m responsible for and what I’m not. I let whatever isn’t serving me go. Journaling enables you to practice how you want to react to things. I am learning now at 50 about myself, about my triggers and learning how to change that.”

An advocate for living life a day at a time, Julie Ann is now able to recognise when her body needs to rest. She no longer beats herself up for taking that time or for things that happen beyond her control.

What is within her control is her mindset, attitude and personal development. And while she enjoys focussing on building her mental strength, she also finds time to safely build her physical strength.

Added Julie Ann: “I spoke to the MS nurses and they asked if I was sleeping more than normal and I initially said ‘No, I’m not’, but then I realised I had run 5k on Saturday and then fell asleep for two hours. They made me realise that wasn’t normal. They told me I basically had to quit exercising.”

Her GP vehemently agreed. She had to listen to her body. She needed time to recover. The more she did the longer that recovery would take.

Once she plateaued the GP and consultants advised she could restart exercise to build her strength and stamina up in case she were to flare up again. So, daily movement has once again become part of Julie Ann’s routine – with careful attention paid to strengthening her legs.

“I work out and rest and go to bed every day because every day is good and every day is bad. I have to make myself as strong as possible so that if the worst does happen and my legs do decide to give up that I can come back in a better place,” she said.

Inspired by the ‘beautiful soul’ of Belinda Bennett – who led the journaling courses set out by MS Society NI – Julie Ann has undertaken additional training with the Centre of Excellence to enable her to get the most out of her journaling.

With the extra information under her belt she now also offers online sessions in journaling to anyone who is open to it.

“It’s not a charity, it’s not a side-hustle,” said Julie Ann. “I did the course for me. But it’s an open invitation.

“People are stressed. Take away illnesses and just think of the normal day, people doing a nine-to-five, everyone has a level of stress. Everybody has the opportunity to benefit from learning how to journal.

“It’s a sad world when we can’t support each other. It’s available to anyone who wants to take it.

“It’s a no judgement ground. Your book is your work, no one else in the world has to see it. It’s personal, it’s selfish, it’s about your own mental health and wellbeing and for you to learn how to cope with this thing called life.”

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