Dublin woman bravely fights disease with help of friends and family

by Rose Barrett
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By Rose Barrett

At 28, Dublin woman Trudie Gorman should be looking forward to the lifting of restrictions and to get back climbing hills and cycling post Covid.

But for the youth worker from Blanchardstown, life is another type of cycle – a daily battle of chronic fatigue and muscle pain. 

Three years ago, Trudie did yoga every day, cycled 30k to work and made long hiking treks over the weekend.  But in September 2018, her life changed dramatically. 

“I suddenly experienced chronic fatigue, and air hunger, along with a dreadful burning pain in my eyes.

“Air hunger is quite distressing,” said Trudie. “It’s like being underwater and feeling pressure build in the chest due to lack of oxygen. It’s absolutely terrifying, I began to wonder if something terminal was happening.”

“I was bed-bound and sleeping 22 hours a day. During the two hours I was awake, I could barely sit up. I lost the power of my legs for over a week or so and was completely bed bound.

“Initially, I was diagnosed with pernicious anaemia and felt better on B12 replacement therapy and began to regain strength.”

But in February 2020, Trudie became bed bound again. 

“I spent six weeks in bed, unable to walk and able to sit up for only short periods of time. I began to be able to move again but I haven’t been on a proper walk or to exercise in over a year.”

“Some days I wake up and can’t move at all. On these days my partner Andrew carries me to the bathroom, cooks me meals and takes care of me.

“This is so far from the strong, independent woman I once was.  Somewhere in all of this, I lost hope and pulled myself through some incredibly dark moments.

“But I don’t want Lyme’s disease to define who I am.”

Lyme Disease

Earlier this month, following specialised testing, a diagnosis of Lyme disease and Lyme co-infections was confirmed.

Lyme’s is an infectious disease transmitted primarily through tick bites, which Trudie probably got while hiking up the Wicklow or Dublin mountains.

“The doctor thinks I was first infected over three years ago and the disease has infected my nervous system, my gut and my brain, causing all of my debilitating symptoms,” added Trudie.

Lyme disease varies dramatically between infected persons and can fluctuate from day to day. Many symptoms mirror many medical problems such as multiple sclerosis, arthritis, chronic fatigue syndrome or lupus, making it hard to identify. Hence it is often referred to as “The Great Imitator”. 

Along with her youth work in Rialto, Trudie say her love of writing has helped to keep her sane. “I’ve been writing and performing poetry for the past five years and I’m currently doing a non-fiction piece for ‘The 32’, a collection of working-class writing.”

There is hope

Thankfully, Trudie can have treatments that will help her claim back her health and her life.

“However, due to a lack of support and funding within the HSE for chronic Lyme disease, the only way to get treatment is privately,” Trudie said. “Ireland doesn’t list Lyme’s as a chronic disease whereas several European do.

“I have spent so much money this year on doctor consultation fees, medications and testing. However, I will also need financial support if I need time off work, along with bio-magnetic feedback therapy, deep-tissue massage to support my immune system response and possibly specialist treatment abroad.

“I got my first vaccine (Astra Zeneca) and hope to get the second one in early June. I’ve managed to work through the pandemic from home, illness allowing and my employers were very supportive.

“I know my recovery will be gradual, and it could take a year or more, with some relapses and flare ups (‘herxing’) expected on the way.”

Hence, Trudie has started a GoFundMe page towards financing her recovery.

“Since I established the page, there’s been an outpouring of love and support. They are grateful to read my writings and see ‘pain poetry’ published. 

“I have an amazing group of female friends around who support me, along with Andrew, and my family.

“Additional funding left over will be donated to Tick Talk Ireland, the Lyme disease awareness organisation which provides Lyme’s sufferers with information, support and advocacy.” To support Trudie medical journey to full recovery, see: https://www.gofundme.com/f/help-trudie-pay-for-medical-expenses

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