“I’ve been surviving from day to day”: Carrie-Anne’s life after stroke
Before her stroke, Carrie-Anne was always on the move. A chef, keen runner and busy mum, she worked up to 70 hours a week, ran 10 kilometres in the mornings and helped keep her household running.
Then, without warning, her life changed.
Carrie-Anne experienced a catastrophic subarachnoid haemorrhage followed by multiple strokes. Until then, she had thought of stroke as something that happened primarily to older people.
“Nothing could have prepared me for it happening, especially at my age,” she says. “My understanding of stroke before was that it was an older person’s condition. It’s so life-changing.”
The day everything changed
Carrie-Anne was at home with her 14-year-old son, Jack, when she began feeling unwell. She developed a severe headache and a stiff neck, then called out to him for help.
“He just stayed so calm,” she recalls. “He called his dad and we rushed to the hospital. The neurologist said if Jack hadn’t acted the way he did, I wouldn’t be here now.”
She spent three weeks in intensive care and four weeks in hospital overall. Her memories of that time are limited, but she remembers arriving at hospital and seeing medical staff gather around her.
“I wanted to see my kids,” she says. “They said, ‘You don’t have time. You have to go now.’ They were rushing me straight to Charlie’s, and that’s all I remember.”
Surviving the initial medical emergency was only the beginning.
Learning to live in a changed body
The effects of the strokes continue to shape almost every part of Carrie-Anne’s life. She experiences weakness and heaviness in her left arm and leg, falls, vision loss and neurological fatigue that means she needs 2-3 hours of sleep during the day. She can struggle to find words or process large amounts of information. For someone who had always been active and independent, adjusting to these limitations has been devastating.
“The hardest part has been adapting to this new form of what I can and can’t do,” she says. “I’ve always been a doer.”
Carrie-Anne is not yet cleared to drive and cannot go out alone. She continues to use walking aids because of her falls, while her impaired vision creates an additional barrier. Everyday outings that many people take for granted may require careful planning and support.
“It’s very lonely,” she says. “Even if it’s just sitting out in the sun having a coffee, something so simple is not simple for me.”
Losing the work she loved
Being a chef was not simply Carrie-Anne’s occupation. It was a central part of how she saw herself and how she showed love to others.
“I was a chef that everyone loved to work with, and I miss it,” she says. “It was always my identity.”
For Carrie-Anne, food is closely tied to family, care and memory. After her strokes, attempts to return to cooking resulted in burns and injuries. Eventually, she had to stop.
“I’ve tried and ended up with massive burns multiple times, including spilling boiling water over myself,” she says. “It got to the point where I had to stop.”
She still contributes where she can, sometimes peeling vegetables for dinner, but she cannot safely use a knife or prepare a full meal. Her husband and son have taken on much of the cooking, although her chef’s instincts remain.
“I can smell it before them,” she says. “I’ll be like, ‘That’s going to be overcooked.’”
One of her most meaningful goals is to cook a complete meal for her family again.
“It doesn’t have to be fancy,” she says. “You can still have a good meal and it be basic. That’s one of my goals. I really look forward to that day.”
Falling through the gaps
After leaving hospital, Carrie-Anne expected follow-up care. It did not come.
“All I was told was, ‘You’ll have a follow-up.’ The follow-up never came,” she says.
Her GP advocated for her and tried to find assistance, but Carrie-Anne and her family were largely left to navigate an unfamiliar and complicated system themselves.
Eighteen months after her stroke, she was still leaning when she walked, falling and living without many of the answers or supports she needed.
“We had no answers, no follow-up, no help,” she says.
The complexity of the healthcare and disability systems was compounded by the effects of her brain injury.
“The medical system is very complex, and you add brain injury into that and there’s another barrier,” she says. “I struggle for words, I struggle to comprehend, and trying to sit there and break those barriers down is so hard for me.”
Finding the Neurological Council of WA
A turning point came when Carrie-Anne’s GP found information about the Neurological Council of WA and helped her make a referral. She was connected with NeuroCare Community Neurological Nurse, Rachel.
“I had never heard of the Neurological Council before, but it is so needed,” Carrie-Anne says. “Rachel has given me hope. Hope that there are better things, hope that I don’t have to stay in the same spot and hope that there is help out there.”
Rachel began by explaining Carrie-Anne’s condition in language she could understand and absorb.
“She explained a lot of my condition to me, and she did it in a way that I could understand and process,” she says. “She advocates for me as a person and for my medical needs. We do it at a pace I can cope with that gets me to the next step.”
Rachel visits Carrie-Anne at home and can accompany her to medical appointments. She has supported her through GP and neurology appointments, phone consultations and meetings connected with the NDIS.
“Comprehending so much at an appointment can be very overwhelming,” Carrie-Anne says. “Rachel takes it all in and then explains it to me so I can grasp it and understand it. Until you need this service, you don’t know how much you need it. It’s life-changing.”
Carrie-Anne’s stroke has also had a significant impact on her family, with her husband and two children having had to adjust their routines, responsibilities and expectations. Rachel has played an important role in helping the family understand Carrie-Anne’s condition and also referring her son, who helps with her medication, meal prep and care, to Young Carers WA.
“He’s a teen boy in high school. Mental health, you need to take care of it, but we didn’t know where to start,” she says. “Within the first meeting, Rachel did his referral and he got the support.”
From surviving towards living
According to Carrie-Anne, Rachel achieved more in their first two months together than she had been able to access during the previous 18 months. Rachel helped connect her with occupational therapy and physiotherapy, begin the NDIS process and pursue practical supports to improve her mobility and independence.
“It will stop me from just surviving and get me back to living and thriving,” she says. “Right now, I feel like I’ve just been surviving from day to day, not living. I look forward to getting back to that thriving path.”
Rachel’s support also extends to the small but deeply meaningful parts of life. When Carrie-Anne wanted to attend a sporting event with her family but worried about fatigue and holding them back, Rachel helped break the outing into manageable steps. She provided accessibility information, discussed using a mobility scooter and suggested noise-cancelling earplugs.
“I don’t want to keep sitting on the sidelines,” Carrie-Anne says. “Neurologically it’s been very hard, but Rachel said, ‘We can make this easier for you. We can do this.’”
Through all the setbacks, Carrie-Anne remains determined. Her husband and two children are a powerful source of motivation and she looks forward to sharing their future milestones.
“I have a lot to live for,” she says. “I have two beautiful children and the most amazing husband.”
Her message to other people at the beginning of a stroke recovery journey is honest, but hopeful.
“It’s a hard journey. It’s one of the hardest fights I’ve ever had,” she says. “There is hope, there is support and there is a reason to keep going. You find your own reason and you fight.”
For Carrie-Anne, Rachel’s support has changed not only the services she can access, but what she believes may still be possible.
“I will advocate for the Neurological Council and its nurses for as long as I’m breathing. Rachel has changed my life. I don’t know where we would be if it wasn’t for her.”
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