Understanding Long-COVID

Long-COVID is still poorly understood four years into the pandemic, with few resources available to inform on treatment plans and expectations for recovery. 

As a result, millions of people are suffering in silence, possibly feeling afraid about how long this new paradigm will affect them for, amongst other things.

I should know, because I was suffering from long-COVID for over two years.

You might be wondering why I’m writing about long-COVID in a Burnout Blog. Long-COVID, at least how it showed up for me, was like the worst burnout you could ever imagine. A lot of the healing from long-COVID is also relevant to burnout recovery. But perhaps more pertinently, many people are struggling with burnout since the pandemic for a variety of reasons: emotional, physical, mental…including potentially even having milder long-COVID symptoms themselves, without even realising it.

My intention is to share my personal experience of long-COVID so that others experiencing similar symptoms may feel validated and informed. I’ll also share information and modalities that have helped me to heal, which I figured out from months of relentless research…and many dollars’ worth of trial and error. 

If I can save anyone else that time, money, and angst, then that will be a mission accomplished.

My Experience with Long-COVID (Everyone’s is Unique)

I never actually experienced any flu-like symptoms from COVID. It wasn’t until day seven of being sick that I was completely floored by fatigue and brain fog to the degree that I couldn’t even stand up for long enough to make myself a cup of tea. My partner at the time had to care for me. They and my friends had to take turns walking Winston (my dog). I was completely incapacitated. Of course, I couldn’t work either.

This went on for over a month. It wasn’t until week six that I was able to start looking at screens again for ten minutes or so at a time. Before that, every time I tried to watch a show, or even listen to music, it would exhaust my brain so much that I’d have to rest for hours. One measly song called for four hours of rest! I literally couldn’t do anything but lie there and, at best, listen to a recording of Tibetan singing bowls.

During the sixth week, I used the limited capacity I had to look at screens to research remedies for long-COVID.

It was disheartening, to say the least.

There was almost no information out there. I felt so deflated. The doctor just told me to rest and that they didn’t know what I should do. It felt hopeless.

Until I found a website that was run by a lab of scientific researchers who had discovered that treating long-COVID the same way you would treat a Traumatic Brain Injury could significantly accelerate the healing process.

This included:

-       Eating foods that are anti-inflammatory and high in anti-oxidants

o   like oily fish, blueberries, and leafy greens

-       Training your brain with a variety of stimulating exercises

o   like the brain training app Lumosity

-       Gentle, regular exercise

o   like going for a walk round the park, daily

-       Limiting time looking at screens (or eliminating altogether)

o   which I had already been forced to do by my symptoms anyway!

-       Taking supplements to promote toxin clean-up and reduce  inflammation in the brain, and promote cellular repair

o   like L-Glutathione and Lion’s Mane

I also learned from a different website that one explanation for long-COVID is the over-pruning of synapses in the brain. 

A synapse is the connection between two nerve cells. It’s where information is passed from one nerve cell to the next along a neural pathway (in a very simplified nutshell!) Synapse pruning is a regular and necessary process in the brain. For example, synapses are pruned when the neural pathway is no longer used. It's like weeding a garden or having a spring clean/clear out. But the usual level of synapse pruning is minimal. Whereas, studies were showing that patients with long-COVID were undergoing mass synapse pruning all at once.

No wonder we were experiencing brain fog!

A key symptom of brain fog is not being able to make connections the way you usually can. So for example, someone might say a witty joke, which I would typically find hilarious. But when I had brain fog, I just didn’t get the joke at all. Or maybe it would come to me hours, or even days, later. 

So understanding that my neural pathways were being over-pruned and that that connection was actually being physically impaired on a cellular level, was quite validating.

Albeit, also, terrifying.

This leads me to what I feel is the most important section of this article...

The Peripheral Impacts of Long-COVID

The symptoms and experiences that are completely overlooked and even shunned by medicine…

Long-COVID literally robs you of the lifestyle you had before.

In my opinion, it should be considered a disability, just like Chronic Fatigue Syndrome. As, at least for me, that’s how it showed up. For two years.

There are physical, cognitive, emotional, and mental impacts from having long-COVID. Of course, all of that then means that it impacts your day-to-day, your relationships, your hobbies, your work…everything.

Physical 

I wasn’t able to exercise at all for about four months. It took about six weeks before I was able to walk to my local park – a five minute walk – sit on a log until I regained some energy, then walk the five minutes home again. I built from there by adding small distances week after week.

After four months, I started doing five minutes of stretching a day. I built from there. To ten minutes, and so on. I then started to do five minutes of pilates mat workouts for beginners, or workouts designed for people in pain or with injuries, and built from five to ten to fifteen minutes over a matter of months. And the trajectory of this was certainly not linear. 

If I ever pushed myself too hard (which really did not take much!) I was right back in bed, often for several days, floored with fatigue again. This happened once just from walking to the bank and back (a ten minute walk either way) because I had to stand in a queue for 15 minutes while I was there. Game over.

It took over a year before I could consider a hike, dancing, or kick-boxing. I had to re-build my entire fitness from scratch.

In addition to this, my digestion was impaired. My brain wasn’t giving my body the signals it needed to know it was time to digest. Which I’ll explain in a sec.

Cognitive 

I wasn’t able to work at all for four months after getting COVID. Even then I returned to work at 20 hours per week and I recall not being able to achieve very much at all. Four hours a day was way too much. I could maybe focus for an hour of that in total.

I couldn’t connect the dots, which makes research (my job at the time) near-impossible. I found myself reading and reading a bunch of literature, taking notes, but I wouldn’t recall anything I’d read later that day. It’s like my brain couldn’t store anything either short- or long-term.

I eventually had to quit that job and find one that was less mentally challenging.

When I started my new job, I went in full-time. This was about 13 months after originally getting COVID. I went into burnout within two months of this (actually, probably sooner, but I’m talking catatonic, apathetic, total wipe-out burnout, two months in). I negotiated with my employer to work part-time and went down to 25 hours a week. This was possible because the job was less mentally challenging than my research position had been.

I had to completely readjust my career because my brain wasn’t able to do the things it had been able to do before I got long-COVID. It’s honestly never been the same since, but that’s also in part due to unmasking my ADHD, which I’ll touch on in another article sometime soon (stay tuned if you’re interested!)

Despite the fatigue and brain fog, I was physically incapable of sleeping. I got on the wait list for neurofeedback therapy, and when I finally started it about six months into my illness, my neurofeedback therapist explained to me that every time my parasympathetic nervous system (i.e. rest and digest) would switch on, my sympathetic nervous system (i.e. fight or flight) would also switch on.

!!!

...that’s not good.

It’s supposed to be one or the other! Never both at the same time.

That’s extremely detrimental for so many reasons I won’t get into here. Except to loop back to the point about digestion:

My body was never in rest and digest mode because of this overriding behaviour of my sympathetic nervous system, so I couldn't digest my food properly.

Also, every time I started to fall asleep, I would suddenly become agitated and fearful and be back in flight mode.

Neurofeedback therapy helped me by training my brain so that my sympathetic nervous system would not switch on at the same time as my parasympathetic. It does this by rewarding your brain for switching into parasympathetic mode, then not rewarding it if the sympathetic also switches on. Your brain eventually learns what the right thing is to do.

Emotional and Mental 

I actually identified earlier this year that the experience of having long-COVID traumatised me. I got a sinus infection this February and was unable to do anything again – very similar to long-COVID – for three weeks. I was so triggered by this, it brought up all the fears again of “will I ever get better?” That might sound melodramatic to some, but when you’ve been in a position before where you’re so sick that you can’t function and you’re being told there’s no solution…your mind goes there. (Well, mine did anyway!) I was terrified I was going to have cognitive disability for life. The triggering from the sinus infection this year highlighted the depths of emotional trauma the entire experience of long-COVID had on me.

Not to mention the apathy, procrastination, depression, anxiety, insomnia, dysregulation, and even mania that I experienced in the throes of it.

Relationships and Daily Life

Depending on others when you’re not surrounded by safe, nurturing people is tough. I’m an immigrant, my family are in the UK (I’m in Vancouver, BC). I have my chosen family here and where possible, they stepped in to support me during this time. I was never in the habit of asking for help, but long-COVID forced me to lean on others more than ever before.

This meant the unveiling of some pretty upsetting truths about some of my “closest” relationships. One of the people I’d believed to be my closest friend, and my partner, both bailed on me. My partner couldn’t take it anymore and just left one day. Needless to say, this person was not my “partner” at all.

So the friend I mention stepped up and took over the lion’s share of support with Winston’s walks. Then I noticed it affecting our relationship negatively. I’m very sensitive and highly attuned. When people are dishonest with me (and in this case, I think he was even lying to himself, it wasn’t malicious) – I can tell. I might not be able to identify the issue directly, but I feel it and I can’t ignore that feeling. When I eventually tried to discuss this tension with him, he completely ghosted me.

I was hard-wired by my emotionally-unsupportive parents (and culture) to believe that I had no right to ask for help or lean on anyone. This friend might have reinforced that trauma, and that untrue, limiting belief. Fortunately I could see it for what it was and it only served to strengthen the love and trust I had in the friends that did stick around, and in my own intuition.

Getting so sick that you depend on those around you for support is certainly an effective way of identifying who your real friends are.

My Path to Healing

I tried a number of healing modalities that all helped me to varying degrees. I won’t talk badly of the ones that weren’t so helpful, I’m sure the practitioners meant well and truly believed they could help me. But every patient is different. My favourites, which I still use from time to time, are acupuncture and various other types of energy healing.

The absolute winner for me though…

I started seeing an occupational therapist to help me shape my routine and lifestyle to accommodate my brain’s newly-emerged needs.

This was largely focused around figuring out that I have ADHD during this time as well, which I’ll get into more in another article (stay tuned if you’re interested!)

It was through my occupational therapist that I discovered circadian syncing.

Circadian syncing is the primary technique that has created lasting improvement in my energy levels.

Most other modalities I tried helped to a degree, but I’d have to keep going back for further treatment to top things up. That's not always financially feasible.

Syncing my lifestyle with my natural circadian rhythms – with the solar cycle – has had so many knock-on health benefits. Including:

- The best sleep quality of my entire life

- Hormonal balance

- Gut balance

- Reduced and often completely absent stress

- Emotional regulation

- Nervous system regulation

- Increased and sustained energy levels

…the list goes on, truly.

So, there are alternative healing pathways out there that can get you on track to recovery. Or that can help you recover completely. I know when I fall out of synchrony with my circadian rhythms (from recent experience after going to a festival and having three very late nights in a row…) that my system can fall back into disarray.

Having strong boundaries around my self-care routine, and maintaining them, is the ticket to feeling healthy, happy, and regulated.

If you’d like to learn more about circadian syncing and some of the hacks I’ve learned along my journey for boosting energy and reducing stress, you can follow me on Instagram where I dig deeper into those techniques, general burnout facts, and my personal journey with it all.

Circadian syncing is at the core of my BLISS Method, which my coaching packages are centred around.

If you’re suffering from long-COVID, know that you’re not alone. And that it isn't hopeless.

If you’d like to discuss more on that, don’t hesitate to reach out via social media or email. I’d love to hear your story or provide any support or insight I can.