I’m 44 years old, I’m a mother of two and a teacher. I’m originally from the UK and moved to Australia in 2014. I have volunteered as a welfare officer with Walk With Us, a charity focused on helping homeless and disadvantaged people in our community and particularly works with younger people.
I was initially hesitant about the vaccine; something felt off to me about this particular one. I felt it was rushed out too quickly. I have regularly gotten the flu vaccine each year and have never had a problem with any past vaccination or medications. My only previous health issues have been eczema and bad hay fever.
I received my first Pfizer vaccine on 28th June, 2021. Working closely with kids and vulnerable people, I thought that if I passed something onto them that really harmed them, I couldn’t live with myself. I also knew a mandate was looming and I have a family to support and a mortgage to pay.
The people at Walk With Us are like family too and my job is very close to my heart. Having the vaccine was presented to us like taking it was an act of care. I thought it was the ‘right thing’ to do for the people around me, despite my hesitant gut feeling. My mum and dad are in the UK and at that stage the federal government was saying we had to hit 80% full vaccination before we opened up. I felt it was the only way I was going to be able to see my parents or get them over here.
The first Pfizer vaccine was okay. I got the usual achy arm, but I met with friends the next day and continued on as normal.
I received the second Pfizer vaccine on 19th July, 2021 and had to take the next day off work due to extremely painful headaches, a terrible fever and intense brain fog and fatigue. I had the chills and my husband left the heater on at home for me. I had four blankets and layers of clothes and was still cold. I decided to fight through and try to go to work two days after having the vaccine. I never miss work and it’s important that I’m there for my students.
Two weeks later the headaches still had not subsided. I was feeling very fatigued, but I took painkillers and being with my students took my mind off things. Lockdown had just begun in Queensland and things were changing at work.
On the 5th August, 2021 after work, I went shopping with a friend. She was driving me home when suddenly I felt my body getting really heavy and I couldn’t hold my head up. I started drifting in and out of consciousness. When we got home, I managed to open the car door, fell out of the car, started throwing up and collapsed on the driveway. I could hear my husband run out, and my friend saying ‘Kasia, can you hear me?’ I couldn’t move a muscle, and my husband had to carry me inside.
He drove me to Robina Hospital and got a nurse to put me in a wheelchair. I couldn’t sit up. They took me into the crash room and my husband had to fight to get in due to the COVID regulations. The nurse kept asking, ‘What have you taken, what have you taken?’, and they put me into an emergency bed.
A doctor came in and incessantly asked ‘What have you taken, what have you taken?’. My husband tried to explain I hadn’t taken anything, but that I recently had the COVID vaccine. I was mumbling and couldn’t speak properly. The doctor pointed to my eczema and eczema scars on my arm and said, ‘These look like needle marks’. He kept asking what I had taken.
Eventually, due to my clinical notes which listed my eczema, the doctor understood the scars where not from drugs and wrote down that I was having a reaction to the vaccine without listing which one. He said I should get a CT scan and a lumbar puncture, believing I could have meningitis.
I got the CT scan and the results came back okay, but never got the lumbar puncture. The doctors did a changeover and the new doctor kicked my husband out even after the first doctor had said he could stay. I stayed overnight on a drip, and the next morning a new doctor told me to take a few days off, go home and have Panadol and Nurofen. He advised that if I wasn’t better in a week, I should come back.
A week later, I was not better after resting at home. I presented back to the hospital still extremely fatigued, often in and out of consciousness with intense, constant head pain and pressure. They said I was tachycardic and I was put in the cardiac ward and left there for hours. No bloods or tests were done. A nurse came in saying things like, ‘Look, there’s people here far worse off than you and we need your bed, we can put you in short stay’. They clearly didn’t believe the symptoms I was describing. I felt gaslit and like I was an inconvenience or something stuck to the bottom of their shoe. I discharged myself. The nurse wouldn’t give me a discharge paper.
The Sunday after that, I got really sick again and kept vomiting. I had to drag myself to the bathroom constantly. I never vomit or throw up. My husband took me to the Gold Coast University Hospital this time. After waiting in emergency for four hours the doctor checked my heart but didn’t see the point of blood tests. I was told I should go home and rest. I was prescribed Panadeine Forte. I pleaded for more tests, checks or help but was again dismissed and told to go home.
I reacted badly to the Panadeine Forte and got sicker. My husband would sometimes have to pick me up off the ground after finding me collapsed on the floor trying to get to the bathroom.
I was dropped off at the hospital again on the following Friday. The nurse collected me and as we were walking in, said, ‘This is your fourth time here now. We’re going to take it seriously’. They took my bloods and moved me to short stay, giving me medicine in a fluid and saying it was a migraine. My head was in so much pain and my brain fog was intense. The medicine made me feel like I was tripping (in a bad way), and they told me, ‘We’re going to try this, and if it doesn’t work, you’re staying’.
It didn’t work, and I was moved to a different ward. I kept asking to see a neurologist, but every doctor that came in quickly read my notes and would tell me it was ‘just a migraine’ or ‘just a headache’. They continued to prescribe me migraine medication.
There was one doctor, a neurologist, who did actually sit and listen to me. He prescribed half an Endone and I finally slept pain-free for a few uninterrupted hours. He said I would need an MRI and a lumbar puncture, and didn’t say it was a migraine. However, the next day, I got a new doctor. I was informed the waitlist for an MRI was 1200 people long, I didn’t get a lumbar puncture and was told once again that it was definitely a migraine. I was prescribed new medicine, sent home, and told they would fit me in when they can.
The medication did not ease my symptoms, and I was still unable to work. I requested to see the neurologist that had actually listened to me. He explained that it could take years to recover, that there was no ‘cure’ and I simply needed to make sure not to do too much. He said that I just needed to rest.
My condition was never named or diagnosed, but ‘post-vaccine encephalitis’ was mentioned, and so were the terms ‘brain trauma and swelling’. He wrote me a medical certificate for a month initially, booked me in for a lumbar puncture and I had to opt for an MRI privately with a GP referral. My lumbar puncture came up negative and nothing showed up on the MRI.
Flash forward to today. Seven months later, I am bedridden for most of the day. I am traumatised about going to the hospital after being dismissed so much. It felt like no one wanted to help. I am very lonely. A few of my friends don’t even believe what has happened to me. My B12 levels were at 101, when they were meant to be 300, something which has been shown to be linked to COVID and vaccine reactions.
I have to have B12 injections and steroids once a month. These flare up my symptoms and bring out my eczema. I cannot work, I cannot go out, I struggle to hold conversations sometimes, and I don’t really get to socialise. I just lie down at home and can’t even watch TV or listen to things very much because it hurts my head. I still struggle to get to the bathroom sometimes.
I continue to have knife-like pains in my head, spinning, pressure, and intense fatigue. I have developed tinnitus (with a high-pitched noise in the left ear, and a low-pitched noise in the right ear), poor fine motor skills and balance, and nausea.
Behind all this, my amazing husband has to do everything for me and for our family. I am running out of sick pay. We are worried about our mortgage and losing our house as I cannot work.
I have two children. One has moved out, but I know my family really struggle seeing me like this. My students miss me at school and the kids miss me at Walk With Us. I have gone from someone who lived such an active and full life, to being in constant pain and having to lie in bed.
My mental health is through the floor. I can feel myself developing an eating disorder as the only thing I know I have control over is what I eat, I can’t plan anything else. I can’t control when I do things, but I started fasting as I was putting on weight due to not exercising. I am very obsessive about my diet.
I struggle with suicidal thoughts. There is no silence or relief and, as my friend who is struggling with a similar condition said, “There are no good days, there are only bad days or worse days.” I feel left behind and forgotten by our government and the medical industry, especially because I just wanted to ‘do the right thing’. I am very scared for what lies ahead.
I just hope that if more of us share these stories, something can be done to help us, as no treatment or medication I am receiving has helped. I hope that people become more aware of what has happened. I would love more people to talk to, and I hope that maybe I can help others going through similar things to feel less alone. I don’t want sympathy, I have just stayed silent for so long out of shame and I had to share my story.
I am so sorry. You are blessed to have a good husband that takes care of you. I cannot imagine what you must be going through, this is so sad.