It was exactly 3 month ago that I became symptomatic with Covid-19 and would later that week be a confirmed case after being tested at a drive-thru testing center here in Calgary Alberta, Canada. I remember that day I fell ill, because I joked to myself that perhaps at the fabulous age of 42, I had maybe over done it after attending 2 social gatherings. It wasn’t abnormal for me to require at least a week to recover typically after a good ol’ night of over consuming the godly yet deadly grapes of the earth.
I was working from home already that week and after three days in a row of 8 hour long naps, confusion, body aches and headaches that worsened in severity I realized it was most definitely the “Rona.” Thankfully I had already been self-isolating, but had to make the call to work to deliver the bad news. Not only did I have to tell my already strained unit they were going to be down a worker, I also had to contact everyone that had attended the outdoor tea party I had thrown at my house that same weekend. It was embarrassing to say the least but thankfully we would later find out that no one had become ill as a result of my illness. Aside from being relatively ill and stuck in my bedroom for 10 days, the two weeks of isolation after that I would say to date was the easiest part that I have endured thus far.
You see, no one is able to prepare you for the complicated variables after the initial diagnosis. Not only can it be challenging to return back to work, whereby do you have to repeat the Provincial Health System directions at least 3-4 times then await approval from the varying levels and then be told to repeat yourself another 3-4 times. Lets not even start on receiving the daily calls from the contact tracers who do not seem to have the information that you spoke with someone earlier that day. But for some reason they also want to take you through 15 minutes of questions only to be told something different than the person you spoke to 3 hours before told you to do. At the end of the day, I’m typically very good at doing what I’m told but I’d have to say I was left feeling less confident in what they had to offer me in terms of advice.
I remember when I returned back to work several weeks later, feeling happy to get back into a routine and be productive again. I’ve fallen victim a few times during this pandemic with the assumption that being back at work is going to produce familiar feelings that give that long awaited dose of normalcy or familiarity. However, my assumptions have fallen short as there is nothing normal about doing child protection in a COVID world, let alone doing it while recovering from COVID.
So it should not be surprising when I tell you in my last naive attempt to resume my regular scheduled programming that I fell hard and fast. It led me to the decision that I had to make for myself. It’s been 3 months since I tested positive for COVID and I have been sick 3 times with the exact same symptoms as before. Extreme fatigue, severe headaches, shortness of breath/tightness in my chest, and intermittent dry cough. The physical ailments are one thing, the mental health is a whole other challenge. I had to wave my white flag and take a lengthy leave from my job in order to heal, however remain at somewhat of a loss as to how to do this.
You see I’m well versed in how to treat and manage my mental health when I’m struggling in that aspect. I know how to implement a regiment of exercise, therapy, vitamins and nutrition as well as a healthy work life balance. I’m also well versed how to recover from a flu, illness, or physical ailment that I’m presented with. So perhaps from the outside its seems quite simple to overcome an illness that is being presented as “the common flu” when in actuality its just not the case for everyone. Just ask the people that have died from it.
So you can see where my confusion lies as for whatever reason I don’t have a clear action plan yet as to how I’m going to use this time to heal. All I’m armed with is the conviction that my cognitive functioning and body is telling me that we are in some uncharted territory and I’m at sea without a compass. In my attempt to seek out answers from my family doctor and the Provincial COVID Health link I have not been provided much information around whats happening to me. Since my initial diagnosis, I have presented at hospital twice, and received ECG’s, blood work, and chest X-Rays but no MRI or brain scan. My research has left me with little direction as the resources available speak to either health specific or alternatively mental health specific. But what happens if they are interconnected and are neurological in nature, which means an umbrella approach to assessment and treatment?
Seeing as I’m not one to sit around and be patient with essentially anything in my life, this predicament is no different. Therefore it seems that I have some work to do when it comes to advocating for my health and taking it into my own hands in order to press the health care system in catching up with the times. So I have quickly began to go down the rabbit hole researching information on the medical case studies involving the neurological effects of Covid-19.
I came across an article in Medical News Today which discusses how viral infections can impact the brain even if the if the virus has not directly infected brain tissue. For example, inflammation of the brain, or encephalitis, most often results from a viral infection. These infections usually cause mild, flu-like symptoms, but when they affect the brain, the issues can be severe.
Politics and personal perspectives aside, I think history can be a valid starting point in order to establish some sort of reference that’s not based in a conspiracy or political agenda.
What we do know is that in the 1918 flu pandemic, there was an epidemic of encephalitis lethargica, or “sleeping sickness.” Between 1917 and 1927, millions of people likely developed this issue worldwide. Many of the survivors experienced lasting behavioral changes and extreme lethargy. Some lived in catatonic states.
Previously, some researchers have observed a link between infections with SARS-CoV and MERS-CoV — the coronaviruses that cause SARS and MERS, respectively — and signs of damage within the central nervous system.
Are you scared yet?
While there is no evidence of anyone living in a catotonic state due to Covid I can attest to feeling the extreme lethargy and some odd behavioral changes. If I wasn’t so in tune already with my pre-existing mental health condition, I could have quite easily mistaken it for just that with the addition of my physician attributing it to depression, anxiety or a mood disorder.
A study was completed with regards to Brain Inflammation in the U.K. at the National Hospital for Neurology and Neurosurgery that described the experiences of 43 people with suspected or confirmed COVID-19 between the group had a wide age range of 16–85 years.
The study team analyzed both the clinical features and the results of brain scans and laboratory tests, and it is the first to have done so in this context.
The report details 10 cases of temporary brain dysfunction, or encephalopathies, with delirium. These patients were mostly over 50 and presented with confusion and disorientation, with one patient experiencing psychosis.
“A further 12 patients experienced inflammation of the brain. The majority of these people experienced a rare disorder called acute demyelinating encephalomyelitis (ADEM), which is triggered by viral infections and leads to damage of the myelin sheaths around nerves.“
The study went on to say that “ADEM is more common in children and that they typically see around one adult with the condition per month. During the period that the study was concerned with, this rate increased to one case per week. This is concerning, as ADEM can progress to multiple sclerosis.”
The team also found reports of nerve damage. Specifically, there were seven reports of Guillain-Barré syndrome, a rare neurological disorder in which a person’s immune system attacks healthy nerve networks. This syndrome is often associated with a prior infection and also involves damage to myelin.
The finding is consistent with a previous report, from Italy, of five cases of Guillain-Barré syndrome in COVID-19 patients.
“We identified a higher-than-expected number of people with neurological conditions such as brain inflammation, which did not always correlate with the severity of respiratory symptoms. We should be vigilant and look out for these complications in people who have had COVID-19.”
– Co-senior author Dr. Michael Zandi
The team also reported eight cases of stroke, which confirms previous findings. These cases are thought to result from the “sticky blood” found in COVID-19 patients.
The remaining patients had other neurological complaints, including dysfunction of the cranial nerve and a brain abscess.
Interestingly, some patients in the study did not experience any severe respiratory symptoms, making their neurological symptoms the first and major presentation of COVID-19.
The authors say that doctors should look out for possible neurological symptoms in people with suspected COVID-19.
“Doctors need to be aware of possible neurological effects, as early diagnosis can improve patient outcomes. People recovering from the virus should seek professional health advice if they experience neurological symptoms,” says co-lead author Ross Paterson, Ph.D.
In eight of the patients, the fluid that surrounds the brain and spinal cord was tested for the virus, and no evidence of it was found. This suggests that neurological symptoms of COVID-19 are not a result of a direct attack on the nervous system.
Understanding exactly how an infection with the new coronavirus causes these symptoms will require more research. However, it seems likely that the neurological consequences of COVID-19 result from an immune response gone awry, rather than the virus itself.
One of the lingering effects that I have personally continued to experience along with the severe headaches and lethargy is the loss of taste and smell.
While the media and health officials report that COVID-19 is primarily a respiratory disease that attacks the lungs, but it has also manifested seemingly unrelated symptoms, such as a loss of taste and smell or memory loss, that can persist for months beyond the initial diagnosis. These oddities suggest a neurological source.
It has been reported that at least two patients also developed strange behaviors shortly after being discharged from the hospital.
“One woman, as described in the paper, repeatedly donned and took off her coat, and began hallucinating lions and monkeys inside her home. Another woman became drowsy and ultimately needed emergency surgery to relieve the pressure on her brain.”
Thankfully I have not come across any lions, tigers or bears, Oh MY! But have experienced confusion and episodes of overwhelming panic whereby I’ unable to process the source or trigger. This can be daunting and imbarssing especially in a professional role like mine as a social worker who is typicaly the one moderating panic and confusion in others.
The authors of the study are now pushing for larger, possibly global efforts to track neurological symptoms. Zandi tells The Guardian that health professionals should begin incorporating cognitive function into their patient assessments, while his coauthor Ross Paterson, a neurodegenerative specialist at University College London, says early diagnosis is key. “Given that the disease has only been around for a matter of months, we might not yet know what long-term damage COVID-19 can cause,” Paterson tells Reuters. “Doctors need to be aware of possible neurological effects, as early diagnosis can improve patient outcomes.”
Ultimately the general consesus out there is that the full long-term effects of these symptoms may not be realized for years, says Zandi. Many patients are currently too sick to place inside brain scanners, The Guardian reports, meaning the full extent of neurological symptoms remains unknown. In addition, some changes may be more subtle and happen over time.
In a seperate Reuters article, Adrian Owen, a neuroscientist at Western University who was not involved in the study, expressed concern over their potential to severely affect the quality of life for recovering patients.
“My worry is that we have millions of people with COVID-19 now. And if in a year’s time we have 10 million recovered people, and those people have cognitive deficits . . . then that’s going to affect their ability to work and their ability to go about activities of daily living,” Owen says.
My hope would be that going forward that both the Canadian Federal and Provincial government will begin applying the research and studies into our present health care approach to Covid -19 as a part of their medical practice and assessment. I believe as the numbers continue to climb more people will be looking for answers. In the meantime, us “long haulers” may just have to pave the way with the wisdom we carry as Covid-19 survivors. From one Long Hauler to another, Keep your Head Up!