Sheila's story

In 2008, my medulla stroke happened out of the blue when I was only 43. It changed my life. Yet I was told by ED clinicians when I presented on a Friday evening, that I couldn't possibly be having a stroke as I was too young and didn't have any of the usual risk factors. Yet my dad, aged 54, had died in the same ED 20 years prior, from a pulmonary embolism, out of nowhere.

My blood pressure was unusually high, my heart was racing, I had a pain in my neck and across my jaw, I was holding onto the side of the bed trying not to fall off because the world was spinning and I felt like I had G-forces pushing me to the right, and I couldn't stop vomiting.

I had returned two weeks prior, from a trip to Vietnam (long haul flights), and was 10 days post knee arthroscopy. Loads of red flags right there! The clinicians and nursing staff were rude, flippant, and dismissive. No-one checked my grip, my eye movements, nor completed any neuro assessments. They suspected food poisoning and considered sending me home.

However, I was eventually admitted the next afternoon and parked in the medical ward of a hospital that wasn't in my home region. And there I stayed for two weeks. The first three days were terrifying. No-one knew what was wrong as nothing I was experiencing was visible except the vomiting. And there were no assessments done in the weekend. I lay in the dark, with my eyes closed, trying not to be sick, and wondering if I would survive or die. I could still talk and hear but avoided moving. The only care I was receiving was four hourly observations.

Diagnosis, via MRI, occurred four days slater. I was told I may, in time, regain some normality. That was the extent of the clinician's engagement the day after the MRI, when I was informed, I'd had a stroke. My world had stopped, and, at that time, I had little hope of an independent future.

The emotional impact on my husband and kids, aged 9, 14, and 16, was significant. Their world was turned upside down. My husband had to take over all the parenting of our three children and cooking etc, while also having a demanding job, in a different region from where I was lying. My widowed Mum had to cope with the reality that she might also lose her daughter. And she was my main caregiver while in hospital, feeding me, giving me a wash, listening and providing emotional support, and even managing to wash my hair while I was bedridden.

Slowly but surely, over the next nine days, I was able to detect minute progress for example, by lunchtime each day, I could get the ceiling to stop moving. Then I could make the poster on the end wall stay still. So, I learned that my brain could work things out. If I didn't look to the right, I could generally avoid vomiting. Then I discovered I felt no worse when my bed was propped up and I was in a sitting position.

After those first nine days I sat up by myself. Then I stood up. Then I walked with a walker and my ever-present vomit bowl. Rehab provided by the hospital was two 10 min on-bed physio sessions and then, when I could mobilise, a couple of visits to support me with getting to walk. I had no physio in the weekends. And the clinical request to transfer to my own region's hospital, that had a stroke rehab unit, was declined by that hospital. So, two Fridays after I arrived in the ED, and facing another weekend of no physio support, I proved I could shower myself and walk around the ward, so I was allowed to go home. A referral was made to my own hospital's rehab team for vestibular physio. But that referral got lost or buried by the receiving hospital and I remained invisible to them for a further six weeks despite phone calls to try and get that physio underway.

Meanwhile I learned quickly, that after a brain injury, mental effort was physically exhausting, and the first few weeks were bleak. But I made little bits of progress every day and celebrated those as significant milestones that told me I would keep getting better. Progress was slow and some activities caused a backward step for a moment. Some days I couldn't do anything but sit still and rest. But, over time, I healed. It took three months to drive, and a year to return to teaching, but once the new year started, I managed to work at my son's school as a teacher aide, which helped build up my stamina.

Some things I'll never do again, like play hockey, basketball or tennis (I was a keen sportswoman until my stroke), or jump on a trampoline. My eye-hand coordination and fine motor skills are toast, and I lose balance very quickly. But my ongoing stroke deficits are invisible to others unless they are walking beside me, as I tend to have trouble walking in a straight line and bang into them! And I'm very prone to tripping over. But otherwise, no-one can see the ongoing hypersensitivity (or neuralgia) on one side of my face and head, the nystagmus in my right eye, the gaps in thinking, the time it takes me to complete mahi due to my terrible coordination and wonky eyes, or the dizziness I feel in new situations my healed brain doesn't know.

So, 17 years on, I'm not only surviving, but I'm also awesome! I’m grateful to be alive, grateful for the support I received from whānau and friends and Stroke Aotearoa, and grateful that an MRI detected the clot and my own belief that I had had a stroke was confirmed.

Through community involvement and my health consumer advisory mahi, I am determined to continue advocating for better care for those who present to hospital EDs with stroke symptoms yet continue to have their symptoms minimised or ignored by clinicians, and who often don't receive in a timely manner, the clinical assessments and treatments needed to prevent further damage or death.