Living with
Long Covid
I am neither a doctor nor do I play one on TV, this is just my personal journey with Long Covid. This is an ongoing project and very incomplete. Feel free to contact me with any corrections or updated information.
This is not “a truth” or “my truth”, but this is THE truth about what happened to me and my family after contracting COVID-19 in October 2020. All politics aside.
Living with
Long Covid
I am neither a doctor nor do I play one on TV, this is just my personal journey with Long Covid. This is an ongoing project and very incomplete. Feel free to contact me with any corrections or updated information.
This is not “a truth” or “my truth”, but this is THE truth about what happened to me and my family after contracting COVID-19 in October 2020. All politics aside.
Hic Insipit Pestis
I think we find out who we really are in the face of a plague. Not only as individuals, but in our relationships, as a community, as a culture and as humanity itself. It seems we aren’t much more evolved than they were in the 1500s, though I doubt we could begin to compare this insipid little beast with it’s medieval counterpart that wiped half the population of Europe off the globe. Back then, superspreading was a crime that was at times punishable by death, and today our nation’s leader hosted his very own televised plague sharing event that would butterfly effect into my own infection a short time later. In all, 11 members of the family & several additional people got it from one superspreading event that I didn’t attend.
Sure it had been discussed and we’d been warned for over half a year before it actually happened, and I knew it inevitably would happen since I was surrounded by a community that refused to acknowledge its existence let alone continue to take anymore precautionary measures to stop the spread… but this thing was angry, mean and violent. My mother in law was the first to fall ill, then my son and husband, then me. We dropped like dominoes and there was something very different about it, I noticed immediately and I was going downhill fast.
This felt… almost targeted. Sure John barely had a runny nose, but it put Jane in hospital, weakened her body which made her susceptible to an unrelated infection which was aggravated by the inflammation eventually leading to her death. But “it’s just the flu”, right? It weakened me fast and hard. The worst day was marked by spiking fever, stabbing pains, violent emesis. I was relatively sure I was dying naked in my bathtub covered in all sorts of unpleasantness that day. I thank God I didn’t go out like that.
It was probably about a month after my initial infection while I was being hit with mystery rashes & every little ‘bug’ that went around that I really felt like it was still living inside me. I continued to feel it’s angry presence and it was about that time that I remembered my kids’ pediatrician telling me about one of his patients who continued to test positive for months and couldn’t return to school despite no longer being in the acute stages or contagious.
Some people weren’t getting better.
I didn’t know how to get rid of it, but that angry little parasite made it personal. So I couldn’t let it win. After two and a half solid years of feeling like a zombie, I became determined to do whatever it takes to get as better as I could.
What is Long Covid?
Long COVID is a tangled interwoven mess of lingering, worsening or new symptoms that happen both during the initial viral infection, and as the virus lingers past the acute stages of infection.
Cellular, Mitochondrial & Peroxisome Dysfunction (page coming soon)
Emotional Dysregulation (“COVID Rage”)
Notable symptoms of the over 200 recorded symptoms include chronic inflammation, chronic joint & muscle pain, chronic fatigue, brain fog, your lungs feel heavy, your heart works overtime, and your already exhausted immune system fights a barrage of old, dormant infections reactivated by the virus. Living with it means navigating a tangle of symptoms, but understanding what’s happening can give you the power to start untangling the mess and finding your way back to living again.
“COVID Rage” Awareness
Emotional Dysregulation
Because this is a very real, serious, nearly unknown & rapidly spreading problem that can make people feel like they are losing their minds. I am going to be very forthcoming about my experience and it may seem unbelievable, but it is a very real phenomenon with physiological causes as listed below. The implications of Covid Rage across the United States, let alone the world are horrific.
Early on in the pandemic, I remember a news article about an ER Doctor named Lorna Breen who worked in the thick of COVID’s initial outbreak in Manhattan & committed suicide a short time after a COVID-19 infection. In an interview after her death, her family said she had never been the same since her infection. Something resonated in that for me. To me, she has always been the first victim of Long Covid.
I noticed as soon as I had an exposure that something was misfiring with my emotions, I thought perhaps it was the stress, both my son and husband just tested positive for the virus they’d been trying to contain since the start of the year and was I really prepared for quarantine? (No) But I got incredibly frustrated at that store clerk earlier… It was an asinine exchange, but was it worth that much energy to still be thinking about? (she asks again, failing to get a reply 4 years later)
The Rest of My Story
The following night I could feel my patience waning as my frustrations started winning out. I have always had issues with anxiety and depression but this was a beast unlike anything I'd encountered before. It was angry and it was making ME angry. Compounded by the frustration and uncontrollable outbursts were urges of self harm.
At one point during my initial infection I had an overwhelming urge to stab my carotid artery with the nearest sharp object which was shocking, confusing and disturbing. I truly don't know how I was able to realize it was not me and had something to do with the infection. Though intensities faded, there were more than a few times I had to battle thoughts of self harm in the following years. I am very well today after seeking help from my doctor who has been very supportive in my journey to Living with Long Covid... It also helps to be able to identify it as Covid rage for managing.
The Physiostorm
Emotional dysregulation in Long COVID is tied to the impact of the virus on both the brain and the autonomic nervous system.
Neuroinflammation COVID-19 can trigger widespread inflammation, including in the brain, due to an overactive immune response. The presence of inflammatory cytokines (like IL-6 and TNF-alpha) disrupts normal brain function, particularly in areas like the amygdala (responsible for emotional processing) and the prefrontal cortex (which regulates emotional responses). This disruption can lead to heightened emotional reactivity, difficulty calming down, and poor impulse control.
HPA Axis Dysregulation The hypothalamic-pituitary-adrenal (HPA) axis, which controls the body’s stress response, can become overactive or impaired. Persistent activation of the HPA axis increases levels of cortisol, the stress hormone, which can intensify feelings of anxiety, anger, or despair. Over time, the body may struggle to regulate stress hormones, leading to unpredictable emotional outbursts.
Autonomic Nervous System Dysfunction The virus can also disrupt the balance between the sympathetic (fight-or-flight) and parasympathetic (rest-and-digest) branches of the autonomic nervous system. In people with Long COVID, the sympathetic nervous system may be overly active, leaving the body in a state of heightened arousal. This makes it harder to regulate emotions, as the body is essentially "stuck" in a stress response mode.
Neurotransmitter Imbalances COVID-19 can affect the production and regulation of key neurotransmitters like serotonin, dopamine, and GABA. These chemicals play a critical role in mood stability and emotional regulation. When they are out of balance, you might experience amplified emotions, irritability, or difficulty feeling joy or calm.
Microglial Activation Microglia are the immune cells of the brain, and when activated by a virus like COVID-19, they can remain in an "alert" state for an extended period. This prolonged activation can disrupt normal neuronal communication and lead to emotional hypersensitivity, akin to how the body reacts to chronic pain.
Reduced Connectivity in Brain Networks Functional MRI studies in Long COVID patients have shown reduced connectivity in the default mode network (associated with self-regulation and introspection) and the salience network (important for emotional and cognitive balance). This can impair your ability to evaluate and control emotional responses, making minor triggers feel overwhelming.
Fatigue and Energy Depletion When the body is running on limited energy reserves due to post-viral fatigue, even small stressors can overwhelm the brain’s ability to cope. This depletion of "emotional energy" can lead to heightened irritability, reduced patience, and emotional outbursts that feel disproportionate.
My Plea
The reality is that people are committing horrible acts against themselves and others and are disproportionately angry, violent & mean. They’re also feeling hopeless and helpless. Lives are on the line. Multiply those inflamed disproportionate feelings and actions across the entire world and it’s easy to see why we have such a big problem. I am a peaceful pacifist and even I got mean…
Now Imagine what it could do to a bad or violent person & put that on a global scale. We need to make this known.
Covid rage feels as if some other person takes over for you and you have no control of what they do, but their words come out of your mouth, horrible things that you don't even think, yet there they are... and you just said them, but you know it wasn't you.
Emotional dysregulation in Long COVID is a physiological storm involving inflammation, stress hormone imbalances, nervous system overactivation, and disruptions in the brain's communication pathways. Recognizing that these reactions are not a reflection of your personality, but rather a biological response to the virus, can be a powerful first step in managing them.
If you or someone you know has been off after a COVID-19 infection. It's probably not them, please help them. If you are struggling after a COVID-19 infection, there is hope. Taking deliberate steps via the free coping mechanisms on this page and within this website will help you begin to manage.
You aren't crazy. Neither am I.
It’s not the flu.
Long Covid Sucks
If you have Long Covid. You are not alone.
If you know someone with Long Covid, please listen to them.
There is hope! I’ve been able to regain so much of my life and have laid out all my tips for living with Long Covid in this website.
Shakespeare.org
A Tidbit of Useless Plague History
The Stratford Upon Avon registrar from the year of William Shakespeare’s birth made a notation on July 11, 1564 indicating the first plague victim in Stratford Upon Avon with the inscription “hic incipit pestis” or “here begins plague” as the burial rates skyrocket eventually peaking the month of Mr. Shakespeare’s birth with a whopping 84 deaths that month. His life was marked by the effects of the plague so much so, that it was even the plague that prevented Juliet’s letter from reaching Romeo in time to prevent tragedy.
Which also makes Mercutio’s curse of “A plague on both your houses” that much more dark.