Portrait: Peyton
I was 28 when I had suffered from a stroke in my thalamus. The thalamus is a paired grey matter structure of the diencephalon located near the center of the brain, and is the body's information relay station. All information from the body's senses (except smell) must be processed through the thalamus before being sent to the brain's cerebral cortex for interpretation. The thalamus also plays a role in sleep, wakefulness, consciousness, learning and memory.
How it all started
It started like any other day. I took my little one to the farm with a friend, made dinner, and put her to bed. At around 9 pm, I was sitting on the sofa when I felt one half of my face drop and I could not move my arm properly. My friend was in the toilet at the time. When she came out she looked at me with concern. I tried to say something was wrong, but the words were not coming out. She immediately called an ambulance, as my words were not making sense and I was suddenly extremely tired.
We were told that an ambulance would reach us in an hour. The hour passed, and we were told it could be another hour. This happened for 4 hours until we were told to make our own way to the hospital, as the ambulances were a 12-hour wait. My friend called my partner, who drove me to the hospital. I could not articulate myself; my words and my ability to stay awake were failing me.
Getting a diagnosis
When we reached the hospital,we were told my partner could not come in,as it was the height of COVID-19. I went in alone, unable to speak or explain what was going on. I forgot my birthday, my address, and the fact that I even had a child. I could not remember my phone password and locked myself out, unable to call anyone. I was checked over briefly by a doctor who told me to ‘sleep it off’ insinuating I had had a drink. I did not know it was a stroke, but I was so delirious I left and ‘slept’ as advised. I was eventually sent back home.
The next day I was in and out of sleep. I could not say more than 3/4 words at a time, taking long pauses and wondering why I could think of what I wanted to say but could not articulate it. My little one had to be picked up, as I could not care for her or stay awake. My friend took me back to the hospital. I was in A&E for 16+ hours, a CAT scan was performed to which I was told ‘We just need to do an MRI’ – I sat longer, alone, and unable to communicate. The MRI was performed and confirmed I had had a stroke. I was then told to wait for a room to be admitted. This took a further 5 hours. So, around 3 am the next day, I was finally getting the care that I needed from that first call.
I was in the hospital for a week. I have had many tests/echoes/transesophageal cardiograms, and two admissions to the hospital for related problems. It has been confirmed I have a PFO (patent foramen ovale), and I am currently awaiting surgery to close it.
My life since the stroke
Life since the stroke has been difficult. I am only now in a position to talk about it without being filled with dread. I had a course of therapy to overcome my mental health post stroke, and the horrific feeling that I was going to die or that I would have another stroke.
Every day is different now, the good days are great... the bad ones are terrible. I can trip over my words a lot when tired. I have learnt to laugh at this, because sometimes what comes out of my mouth is just noise and makes no sense, it even baffles me sometimes! The tiredness that comes with a stroke is unbelievable and won’t be understood unless you have one. I often feel misunderstood for being so tired, or not being able to articulate my words, and often won’t admit when I am having a bad day. Sleep also has been affected. At times, I can be extremely tired, but unable to drift off.
I don’t want the stroke to define me, it challenges me daily, but I won’t let it be my whole story.
Wins along the way
I started work late last year, and recently took a promotion and I am now working full-time. It’s a constant push to better myself, my memory, and make a stand against what tried to take my life from me. I have had such great support from my partner, friends, and family! I cannot thank them all enough for being my strength, being patient with me, and understanding that some days the smallest of things can be very difficult. I have moved house, and genuinely look forward now. Rehabilitation is life long, but I’m aiming for each new day to be better than the last.
Strokes are not age-dependent. Healthcare needs to understand this. I had a stroke and waited 2 days to get care, I was lucky. Some have not been.