I lived a busy, stimulating life prior to the COVID vaccine. I grew vegetables, bred bettongs which are small native Australian marsupials, and raised chickens and turkeys on our small hobby farm. I had also home schooled our two daughters until they went to secondary school. I developed chronic fatigue after a bout of pneumonia in 2013, but I managed the mild symptoms easily.
I had just started a wonderful part-time administration job with the South Australian Science Teachers Association (SASTA). The staff knew me well, because my daughters had successfully entered SASTA’s Oliphant Science Awards every year, and I supported their entries enthusiastically. I adored my colleagues. We were a great team and they supported me in turn.
I got the vaccine because COVID worried me more than the vaccine. In 2020, friends and family relayed their awful COVID encounters while overseas, and long COVID also concerned me. I listened to ABC broadcaster Dr Norman Swan and read many research reports and articles that, at the time, appeared firmly rooted in science. Although these new vaccines alarmed me, I researched COVID effects on chronic fatigue sufferers and thought the vaccine looked less harmful.
I got my first Pfizer vaccination in my left arm at the Adelaide Showgrounds on 29 June 2021. I felt fine for the rest of the day. The next day however, an hour-long bout of diarrhoea and vomiting came out of nowhere. I put the strange incident down to eating something disagreeable and went about my life. I got my second Pfizer vaccination at the Adelaide Showgrounds on Tuesday 20 July 2021. Once again, I noticed nothing for the rest of the day. The following day though, I slept for 21 hours out of the next 36 hours, and then felt fine.
I started my new job from home because South Australia went into a short lockdown. I returned to work, but over the next two-and-a-half weeks, my health nose-dived. I struggled to comprehend words, and by the time I had figured out what people had said, they had moved on. My confusion was off the scale.
A bout of overwhelming confusion and fatigue hit me on Friday 13 August. I left work and drove home through the city. I stopped at a set of traffic lights and nodded off until startled by the sound of tooting. Dazed, I drove to my husband’s workplace nearby, and he drove me home. I went straight to bed and slept for 19 hours. I spent several days in bed. I thought I had pushed myself over the edge in my new job and did not link the vaccine to my symptoms.
Meanwhile, the Oliphant Science Awards approached. With over 2,000 entries to be registered, sorted, judged, and displayed for our big Open Day on 22 August, and then all packed down and logged for collection again afterwards, it’s the biggest and longest five days of the year for us. However, I felt dreadful and knew it would be impossible to perform my allocated tasks. On Sunday 15 August, I made a soul-crushing decision and e-mailed my boss. I told her I was too ill to continue working, but that I would do whatever I could to help out with the awards during the upcoming week. My boss replied and said that she understood. She said that I needed to look after myself, but she was appreciative of me coming in to help.
I dragged myself to work on Thursday 19 August. All I wanted to do was sleep. I went to my desk, sat down, and put my head in my hands. Someone approached me with an enquiry, but I literally could not move or respond. I’m a conscientious worker and would never, ever ignore anyone like that. But my brain shut off and I felt like one of those wind-up dolls that slumps when the mechanism runs down. It was my first paralysis episode. I could move again after about 10 minutes. My colleagues called a cab and told me to not return until Sunday’s Open Day. I lasted the duration of Open Day but felt too ill to help pack up. My colleagues sent me home in a cab.
I returned the next day with my husband to help with project collection and to assist a staff member who had injured her ankle recently. My husband did all the supporting, because my confusion and bewilderment had intensified, and I fell asleep in a beanbag. I had no idea what to do, and the staff sent me and my husband home at midday. I never returned. I was devastated. The Oliphant Awards mean the world to me and were the highlight of my home-schooling years.
A medical scientist friend told me a week later that she thought I might have had a reaction to the vaccine. I was sceptical at first, but she told me she was hearing all kinds of vaccine-injury stories. She was very pro-vaccine herself, and thus unlikely to think negatively of the vaccine without good reason. I wondered if she might be right.
In the following weeks, I slept about 15 fragmented hours a day. My head buzzed and pounded, and my brain felt as if it were vibrating. Visual disturbances flickered behind my eyes, non-stop tinnitus screamed in three separate tones, and I felt disoriented and disengaged from reality. The brain fog and confusion worsened. I scrambled to find the right words, only to forget what I was saying midsentence. I could barely stay awake during the day, yet insomnia raged at night. I lied in bed, sleeping fitfully, existing in a dreamlike world, half-awake and half-asleep.
I could no longer work. I could no longer drive. I could no longer cook. My hands vibrated internally, and holding a knife to cut anything was impossible. I could no longer look after our little farm or my family.
I saw my GP in late August. She knows me well, and my appearance shocked her. I told her I had never felt so terrible in my life. She ordered blood tests, one of which came back with raised D-dimer levels, which is a clotting indicator, so she referred me for a chest CT with contrast dye. She also ordered an MRI to check for anything else unusual. Both tests showed nothing abnormal, but my neurological symptoms continued. She said she would arrange for me to see a rheumatologist and a neurologist, and to have an EEG. I was to return to get the referrals.
My sleep attacks increased. I would be talking to people when suddenly my head would slump heavily and uncontrollably, and I’d nod off. I referred to these as my ‘nods’ because I could maintain a certain level of awareness and could hear everything.
The terrifying paralysis episodes escalated and lasted up to 20 minutes. I slumped, unable to open my eyes, move, or make a sound. I told myself to wiggle my toes, move a finger, open my eyes, take a deep breath, but unless someone physically moved my head, the paralysis continued. It was a kind of locked-in syndrome.
Hallucination, visual, auditory, and tactile, tormented me. I heard my mother talking to me as I lied in bed one night, and I would often hear what sounded like a radio, but I found nothing when I investigated. I also had strange internal visual disturbances with complex images changing and flickering in rapid succession. I wanted to escape these visions, but I could not escape my own head. The internal visual disturbances exacerbated the tinnitus, brain fog, and confusion. The tactile hallucinations terrified me the most. I felt my husband tapping my head in bed one night. I rolled over and saw he was sound asleep. Another time, I felt someone playing with my hair. The worst hallucination of all, though, was when I felt someone place a hand on my shoulder from behind when I was alone in bed.
In early September, my husband and I were out to dinner with friends. I almost nodded off into my Pad Thai and knew I would not last the evening, so I left the restaurant and went to sleep in the car. A couple of weeks later, the friend we’d been out with that night told me she thought I might have narcolepsy. I looked it up and the symptoms matched.
By this time, I had no doubt the vaccine was responsible for all these weird events, so I self-reported my adverse reaction to SA Health online. Within an hour of me hitting “enter”, they rang me for further information.
When I told my GP that I had reported my adverse event to SA Health, she wrote a referral for me to the Adverse Events Following Immunisation (AEFI) immunologists at the Royal Adelaide Hospital. During that appointment, I also asked for a referral to a sleep specialist. My GP doubted the narcolepsy theory, because I could still hear what was going on around me during my many nods. She said we needed to finalise referrals to a neurologist and a rheumatologist, but she agreed to refer me to the sleep specialist first, as she had witnessed me nodding off several times.
I saw a thoracic and respiratory sleep specialist on 22 October. During the appointment, I had a sleep attack. He organised genetic testing for narcolepsy and a hospital sleep study referral. He also prescribed modafinil for me immediately.
On Friday 19 November I rang SA Health to update my adverse event report to tell them about the narcolepsy. They said to wait until I’d had my sleep studies and I’d seen the AEFI immunologists. They told me to apply for compensation. But I can’t, of course, because the government scheme does not allow for neurological damage from the vaccine.
I went for a 24-hour sleep study on 23 December. I had one overnight study called a PSG test, and a daytime study called an MSLT sleep study. That night, I didn’t get the required six hours of sleep to go on to do the MSLT and was sent home early. I was shattered. I wanted answers. Both the sleep technician and sleep scientist did tell me, however, that the brain waves they detected were like none they’d ever seen before, and that perhaps I should see a neurologist. Unfortunately, I never saw the strange brain patterns they mentioned.
I was devastated about the failed sleep test. I posted my disappointment on a Facebook narcolepsy support group on Christmas Eve. I had mentioned, in code, that the vaccine had caused my symptoms and I wanted to know if this had happened to others, too, or was I truly a unicorn? It was a kick in the teeth when they removed my post and banned me from the support group for telling my truth.
In January 2022, my nods lessened, and I paid attention to other symptoms I had noticed but ignored in my brain haze and fatigue. As I scanned the tree line from my decking, the trees looked like cardboard cut-outs. I no longer had a smooth view; rather, my eyes took jarring “snapshots”.
I saw my optometrist on 14 January. She diagnosed me with a delayed 3D depth perception which has since resolved, and horizontal nystagmus, a condition that causes the eye muscles to jerk and twitch and which explained the snapshot effect. Horizontal nystagmus relates to issues with the visual cortex, 3D depth perception with the cerebellum, and orexin-related sleep disorders with the hypothalamus.
I had my first Telehealth appointment with an AEFI immunologist on 19 January. She ordered a whole raft of new blood tests to check neuronal antibodies. She also gave me a three-month exemption from further COVID vaccines, and even advised against having a flu shot that year.
I went for another sleep test on 21 January. This time, although I slept enough for the PSG, hospital fire alarms disrupted the MSLT. Nevertheless, the sleep scientist said they had enough information to rule out narcolepsy, but they had no clue what was going on with me. He thought it might be a traumatic brain injury. My genetic blood test confirmed I did not have the genetic markers for narcolepsy. At the follow-up appointment with the sleep specialist, he said that I needed to see a neurologist for more tests, and he relayed this to my GP.
I saw the neurologist on 14 February. He tested my reflexes with a mallet and concluded that I had functional neurological disorder. He said I had psychogenic non-epileptic seizures and that I needed to see a psychotherapist for past medical trauma issues. I was stunned as I had put so much faith into him giving me answers. “That diagnosis,” I said, “is a cop-out.” He begrudgingly agreed and requested that I have an EEG to rule out epilepsy.
I had what was meant to be a seven-day EEG on 30 March, but I pulled the plug after six days. The stress of having 25 head electrodes, three heart electrodes and a chunky battery pack attached to my body nearly drove me mad. Nevertheless, the EEG recorded no evidence of epilepsy, but it did record ventricular tachycardia at night, together with multiple episodes of significant atrial fibrillation, another symptom I’d had since August but ignored, as it was less than the neurological symptoms.
On 20 April I saw a general physician, a doctor who specialises in unusual medical enigmas, to help make sense of everything. As we still had no proper understanding of what had happened to me, she ordered more blood tests. We also discussed pacing myself to conserve energy, using a wheelchair where possible instead of walking, and waiting on the cardiologist’s test results before trying medications.
I tested positive for COVID on 28 April. I notified my GP and the AEFI immunologist, who gave me a prescription for molnupiravir. I vomited up the first couple of doses, so I gave up on that, as my symptoms were mild. I felt okay until day 12 when the fatigue got so bad that I felt as if I were climbing Mt Everest in a lead suit while dragging a truck tyre behind me. I didn’t know it at the time, but the AEFI immunologist had immediately written a referral for me to attend the long COVID clinic.
Around the end of May, my GP, whom I’d been seeing every two to three weeks throughout all of this, ordered different blood tests, because she’d noticed I had consistently elevated red blood cell counts. This new test showed increased kappa free light chains, which can indicate bone marrow and blood cancers. Over 2 and 3 of June I had an echocardiogram which came back all clear, and a stress test that the cardiologist said was fine, even though my heart went nuts. He ordered a three-day Holter monitor and passed me on to a different cardiologist for those results.
I had another appointment with my AEFI immunologist on 8 June. She ordered a repeat of the kappa free light chains blood test and a urine test. She also ordered further tests for EPO and JAK2, which can indicate polycythemia vera, a type of myeloproliferative neoplasm – another type of bone marrow cancer. They extended my vaccine exemption.
I saw an ENT on 20 June to discuss my tinnitus, which was now a single loud scream rather than three separate tones of screaming banshee. He said he was seeing a lot of people with tinnitus post-vaccine. He said there was nothing he could do about it and that it dissipated for most people after about seven months. I’m at 17 months and counting.
I finally got my blood cancer test results on 6 July, and they showed no cancer markers. Some markers were elevated, however, and they wanted to repeat the tests in a few months. My AEFI immunologist had moved to Hobart, so my new immunologist advised I get a second opinion from another neurologist. My GP wrote a new referral.
I had a Holter monitor on from 15 to 18 July. The second cardiologist said it showed multiple episodes of atrial tachycardia every day, and an ectopic heartbeat. He said the atrial tachycardia wouldn’t kill me, but they could medicate me for it if it bothered me enough. I chose to avoid further medications and live with the heart flip flops, which are part of dysautonomia and which my GP had recently also diagnosed.
My final cardiac test to rule out coronary artery disease was on 28 July. I had a CT angiogram with contrast. Unfortunately, they pierced a nerve in my arm as they inserted the cannula. I was cleared of coronary artery disease, but the nerve damage to my right forearm will be long term, possibly permanent. I needed a couple of appointments with a specialist physiotherapist to help the initial healing.
In May 2021, when I was healthy, I’d booked tickets for my daughter and me to see a Louis Tomlinson concert in Perth. I tried to cancel the tickets when I got ill, but the ticketing company refused to refund our tickets. I booked the flight and accommodation around April – May 2022. This was around the time I got COVID because I felt better and long COVID fatigue was yet to hit. I only booked an overnight stay because I did not feel up to spending a few days exploring Perth as we had originally planned. Two weeks before the concert, I was still so ill that I called the airline to change my ticket into my husband’s name. They refused, saying they would allow me to take a wheelchair but not to change my ticket. I was very unwell but hoped I could manage one night in Perth. Cancelling the trip would have devastated our daughter, and I couldn’t do that.
The flight over on 29 July was fine, and the concert was amazing. Despite my fatigue and the difficulties we faced after the concert, including someone taking our wheelchair-friendly taxi and leaving us stranded in the rain, we were positively beaming the next morning as we boarded our flight home. My daughter was delighted to see me so happy.
An hour into the flight, I could not breathe. I took my mask off and opened the air vent above me, but my breathing worsened. Gasping, I flagged the steward and he set me up with an oxygen cannister. I was in a shocking state and the steward called for help over the intercom. A doctor, his ER-nurse wife, and a respiratory physiotherapist all raced to assist.
I passed out briefly and when I came to, I saw my hands were swollen and blue. I had pins and needles from head to toe and my whole body was internally vibrating. I could not move or stand. They wanted to divert the plane to Kalgoorlie, but I begged them to keep going as I just wanted to get home. At one point, the respiratory therapist, a complete stranger, had to take me in a wheelchair to the toilet. She was a very kind and gentle woman, but I cried with overwhelming shame and embarrassment. I struggled to breathe for the next hour and a half and was terrified to be on a plane in this state. My poor daughter is still traumatised from seeing me like that, and it has completely diminished her enjoyment of the concert.
I disembarked on a stretcher and an ambulance took me to hospital. My tests all returned normal and staff discharged me after seven hours with no meds or treatment. They said it was a panic attack. I told them I panicked after I couldn’t breathe, not the other way around. My symptoms flared ferociously after the plane incident. I needed my wheelchair to go anywhere pretty much. I broke into a sweat when I tried to stand, and my muscles felt like limp spaghetti, trembling internally.
I called the long COVID clinic in August 2022. They said they’d re-triaged all referrals and that there was nothing more they could do for me. The AEFI immunologists have also said there is nothing more they can do for me. There’s no point giving me more vaccine exemptions, as the mandates have been dropped, but they’ll supply one if needed and they advised me not to get any further COVID or flu vaccines.
I saw a new neurologist on 26 October, and she confirmed the FND diagnosis. She believes this is now with me for life, and I will repeatedly experience the horrible flight episode from time to time if I exhaust myself. It is not a diagnosis of exclusion; it actually has its own diagnostic criteria. The internal vibration, internal muscle trembling, brain fog, crushing fatigue, dysautonomia, absence seizures, and inability to speak at times are all FND. I may see some improvement, but the underlying brain damage seems permanent.
I’d been having menstrual issues for a long time as well. I’m unsure if this is age-related or vaccine-injury related, but I had a pelvic ultrasound on 10 November that showed fibroids and adenomyosis that were absent three years ago. I’m to add a gynaecologist to my long list of specialists and will need to go for a uterine biopsy soon. I will ask if they can detect any amyloid tissue or spike protein. I’m not sure what they’ll say about that request.
On 17 November I saw a gastroenterologist for my worsening reflux, and had an endoscopy on 22 November. There is evidence of inflammation and a hiatus hernia, but he is loath to operate, so I remain on strong anti-reflux medication.
My neurologist did a nerve conduction study on 7 December which ruled out large and small fibre neuropathy. Next, I will need to see a neuropsychologist for extensive cognitive testing. I worry that all of this may be a precursor to other neurological diseases. Time will tell.
My general physician has me trialling low-dose naltrexone (LDN), as it reduces neuronal inflammation, blocks pain, and helps with fatigue and brain fog. It is very slow acting, but I’m seeing glimpses of better days. It is still a rollercoaster that I want to get off, but I’m tied to this ongoing and unpredictable illness. I see a psychotherapist who helps me work through the events of the past 18 months.
I also worry about my husband. In February 2022, five weeks after his mandated Moderna booster vaccine, he was hospitalised for five days after an uncontrolled episode of atrial fibrillation. Despite all this, he works two jobs to keep us financially afloat.
My medical bills are mounting, and I can’t get disability, because no one will say my symptoms are permanent in a way that is to the government’s satisfaction. My neurologist recently told me she would write a report to help me with an application to the NDIS for support, but I feel so unwell that it is too much at the moment.
Many people are speaking out now. I want their stories out there. I want the government and the medical establishment to acknowledge that these vaccines cause far more damage than just myocarditis. I have lost my life and livelihood to these vaccines. I have missed my children’s sport matches and award nights. My friends have disappeared. I am not the person I once was. Before the vaccine, I was writing a novel and making art. Now, I’m a shadow. I stutter and stumble over words. My daughter says I sound wise and thoughtful with all the pauses in my sentences. Bless her. But I know I sound dopey.
I am enraged at all the gaslighting, censorship, and silencing of the truth so many of us are experiencing. The government knew this vaccine was barely tested when it coerced people into it, so why were research clinics not established to monitor side effects and report them to doctors? What has happened to the vaccine injured is shocking, vile and cruel.
I’m not a litigious person, but I am furious, and I want compensation. This has cost us tens of thousands of dollars in lost wages, specialist appointments, testing, and medications. That doesn’t even include all the pain, suffering, and trauma my family and I have experienced. Someone must be held to account for all the harm these vaccines have caused.
I do not want millions of dollars from this. I just want fairness.