My first confirmed Covid infection was in fall 2022 at a time when the few Covid protections we had left only applied to healthcare settings. I knew I was at higher risk of developing Long Covid as I am a working age woman. This terrified me as my son had already had Long Covid which took him nearly a year to recover from, with little to no help from medical professionals. When my son developed Long Covid just over a year earlier there was already a plethora of Long Covid studies showing the harms of a Covid infection but these studies hadn’t made their way to many doctors yet, leaving us to struggle alone.
During my infection I spent the first 9 days in bed with the worst migraine of my life. Nothing would break the pain: not my prescription migraine meds, not my prescription painkillers, not a migraine ice cap, not a hot shower, nothing. In the early months after my infection I had a nearly daily persistent migraine; it was honestly so unbearable that sometimes I wondered if it would be better to die. It started at the base of my head and felt like it was in my skull and deep in my brain. If only I could release the pressure in my head maybe it would numb the pain in my brain and just maybe I would get some relief. I told a few people it felt like Covid was destroying my brain. They all looked at me like I was crazy but there’s studies that show brain damage from Covid.
Along with the migraines came dizziness, insomnia and what everyone calls “brain fog.” But let's call it what it is: cognitive dysfunction. For me it was concentration problems, memory problems, word finding problems and processing speed issues. In the early days I would lose utensils in the bottom of the pan when I was cooking or forget I was cooking and leave the room only to have my husband come find me to ask what I was doing because I had left the food cooking on the stove. It would take me forever to do simple tasks at work because I couldn’t focus. By the end of a workday I couldn’t even do basic tasks. I had to leave work early often to go home and rest because my brain was so jumbled I could no longer think. When having conversations with co-workers I couldn’t think of the words I wanted to say, leaving me feeling dumb and embarrassed. I would have many conversations with my children where I would ask a question, they would answer, I couldn’t understand their response or forgot the question and/or answer, then I would ask the same thing again only to be reminded by my elementary school children that I just asked them that.
I was exhausted after a day at work and would lay in bed until I had to tuck my kids in at night. I had little to no energy to cook, clean or help my kids with homework. My husband had to do it all. I only work part time so on my days off when my kids were at school I would spend the whole day sleeping from exhaustion. To this day I have never woken up feeling refreshed from a good night's sleep. I would feel dizzy and lightheaded when standing, sitting or laying was definitely better. I developed heat intolerance and night sweats too. Driving at high speeds was overwhelming as a result I didn’t drive on the highway for 10 months.
It wasn’t until a few months after my infection that my parents understood how sick I was. My husband had to take me to the ER in the middle of the night and they had to come over as the kids couldn’t be left alone. I had unbearable pain in my head and stomach and had been throwing up and having diarrhea all day. When I lost control of my arms and they began to tremor along with my hands cramping up, we decided I needed to go to the ER. Stroke runs in my family and is a risk after a Covid infection. My parents phoned my sister and told her my house was a disaster. Her response was “she’s been trying to tell you for months how sick she is.”
When we got to the ER the wait time was only 2 hours. That was short lived. It became chaotic in there after a car crash with multiple trauma patients. While waiting to be seen by a doctor the arm tremors, hand cramping, and this time leg weakness started again. My husband got the attention of the triage nurse and helped me get to the nurses’ station as I couldn’t walk on my own. A doctor was called over and I was laughed at when I asked them if I could be having a stroke as it runs in my family and I had recently had Covid. The nurse said “I thought you were here for vomiting”. The doctor looked over to the nurse and said “it’s anxiety.” My husband and I were shocked. We didn’t know how to respond. Why would the doctor say that? He had seen me for all of a few seconds. He then kept prodding me to count backwards by 7 but I couldn’t, my brain wasn’t working properly he implied I wasn’t trying. I felt that no one I had seen up to that point in the ER was even listening to what I was telling them.
Even though more than a year has passed since my son's Covid infection, many doctors and the general public still have little to no knowledge of Long Covid. Valid patient concerns are being dismissed at the ER, general practitioner appointments and specialist appointments when all routine tests come back normal.
Now there’s a few leading theories on what’s causing Long Covid but no treatments yet. Among the theories are:
- vascular damage and/or microclots preventing enough oxygen from getting to people’s brain and other organs,
- mitochondrial dysfunction and/or low cortisol causing the crushing fatigue and post exertional malaise
- brain inflammation, or brain damage causing the various neurological symptoms
It took about 6 months for some of the symptoms to become less frequent. I’ve had many doctors’ appointments, physical therapy sessions and took a self-management program for Long Covid called BREATHE. That was the first time I really felt listened to. It’s also where I learned about ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), PEM (Post Exertional Malaise), Dysautonomia, and POTS (Postural Orthostatic Tachycardia Syndrome). That pacing or managing my energy, diet, and medications can help control some of my symptoms of Long Covid even if there is no cure yet. That I might have dysautonomia, that I need to advocate for referrals and tests to get a proper medical diagnosis because our healthcare system is overwhelmed and under informed about Long Covid. I'm still waiting for my MRI, neurology referral, and to be accepted into a Long Covid clinic. The wait time for these all vary between 8 to 12 months.
I’m a year post infection. I have possibly found a new migraine medication that's helping, along with physical therapy and massage to get my migraines back down to a manageable level of 2 to 4 a month. The preventative migraine medication my doctor put me on can also help dysautonomia which could explain the improvement in some of my other symptoms as well. We will see if this sticks but insomnia is still a factor most nights and the cognitive dysfunction comes and goes.
Long Covid has been lonely. Family and friends do not understand. They only see me on my good days, not when I am lying in bed on day 4 of a migraine that won’t break. People don’t understand why I am still taking precautions. They don’t know Covid is still prevalent, what Long Covid is, or that a reinfection can make my symptoms worse. I am either met with a blank stare or someone rapidly changing the subject because the thought of Covid makes them go back in time to the early days when we knew nothing and everyone was frightened. But denial won’t work. Long Covid is real, and it's time for the medical community to listen to us.
Next time a friend, a family member or a patient with Long Covid shares their struggles, imagine that it could be you, and ask yourself, what if it was me who was disbelieved?