Let my long haul COVID symptoms be a reason for others to get vaccinated

This piece originally published on Nov. 12, 2021.

This First Person piece was written by Alanna Carlson Sinclair,a lawyer with the Saskatchewan Human Rights Commission in Saskatoon who contracted COVID-19 in 2021.Carlson Sinclair also has a passion formilling local grains and baking.

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"We don't know what the long-term consequences are."

"There's not enough research yet."

These thoughts swirled through my head when my husband and I got COVID-19 in March 2021. Now, as groups use these same words to resist getting vaccinated, my disappointment is outmatched only by the irony.

Getting an illness and being sick for months is considerably worse than getting a vaccine, which has been shown to lower the chances of getting ill in the first place.Believe me, I know.

When we got sick, we were hopeful that we would recover soon. We were active and healthy 29-year olds. However, this was in the springwhen we were not yet eligible to receive the vaccines.

My husband's symptoms improved steadily, but mine stuck around. For seven months, I have felt many times like I must be two weeks away from feeling better, only to relapse and lie in bed for a week.

The most significant lasting symptoms were debilitating fatigue, a racing heart, brain fog, headaches, vertigo and memory loss. It became challenging to walk, talk, read, groom myself, do housework and attend appointments.

LISTEN| CBC Radio's Saskatoon Morning host Leisha Grebinski speaks with Alanna Carlson Sinclair:

At times, the headaches made my brain feel so swollen that it felt like my skull would crack. The dizziness brought the risk of falling. My brain was thick with fog. I lost much of my vocabulary and memories from the past year. I used the wrong words and spoke slowly.

I could not work as a lawyer and had to take a long-term medical leave. I also had to give up my hobbies of milling grains, baking and volunteering with local community boards.

When I interacted with my family and friends, I used all my energy to mask how serious it was because I wanted to protect others from worrying about me. I did not want others to be scared for me, yet I was full of fear.

I worried about how long this illness would last. I worried about letting down my family and co-workers who rely on me for my archival memory. I asked myself who I am without my memories, knowledge and intellect. How long would they take to come back? Would I ever get better?

I was desperate to find practitioners that could help me. I visited four family physicians, a neurologist, a naturopathic doctor, a chiropractor, physiotherapists more than 20 practitioners in total. I kept records of my symptoms and attended five to eight appointments per week. It was exhausting.

Physicians performed tests and diagnosed me with several related conditions. They referred me to cardiology and internal medicinewhere I currentlysit on waitlists. The recommended medications and supplements had me taking more than 20 pills per day. There was little direction for recovery, other than rest.

It is estimated that as many as one in three COVID patients will develop long-term symptoms. I joined a Facebook group of more than 14,000 Canadians with COVID long hauler symptoms helping each other navigate recovery by sharing advice, research studies and recovery guidelines. I participated in numerous COVID research studies from all over the world.

Other provinces have specialized post-COVID clinics to treat patients.Saskatchewan has not yet set up a clinic to solely address the long-term symptoms of COVID-19. I understand that the Saskatchewan Health Authority, the University of Saskatchewan's College of Medicine and the Ministry of Health are working on providing recommendations on how the symptoms could be managed in the province.

It took months to find local practitioners that could help me. Only three had done any education about long hauler symptoms.

My physiotherapist determined that the COVID infection gave me symptoms similar to a severe concussion, despite not having a head injury. After doing significant daily rehabilitation exercises for weeks, I began to tolerate more reading and walking.

My occupational therapist trained me to pace my energy with a points system and helped me identify which practitioners to continue seeing.

My doctor told me to keep resting and stop thinking about returning to work. I desperately did not want to become one of the many long haulers still sick up to 18 months after being infected.

I reasoned that since my physical symptoms were also symptoms of chronic pain, chronic fatigue and severe anxiety, then pain and anxiety treatments should help me improve. I researched pain and brain science to help me understand how to treat these chronic symptoms. I listened to interviews and read works by doctors, patients, social workers and researchers.

I started doing daily brain training exercises, somatic tracking, pain coaching, regulation techniques and expressive writing. It took time and patience to determine which techniques work best to help my overworked autonomic nervous system.

I also completed cognitive behavioural therapy courses and learned to challenge my unhelpful thoughts, write thought modelsand deliberately create more helpful thoughts about my safety and recovery.

While doing this difficult yet necessary internal work to regulate my nervous system, my physical symptoms steadily improved. The headaches and brain fog decreased. My memories, vocabularyand energy began to return. Even the sparkle in my eyes came back, demonstrating that my nervous system was regulating back to homeostasis. My health team noticed the results and encouraged me to continue the work I was doing.

Though I experienced improvements through mind-body techniques, that does not mean it was "all in my head." The symptoms I experienced were real and physical; all pain is real, no matter the source. It's not really "mind over matter" either, as the body and mind are intrinsically connected.

It was hard work to learn the skills to regulate my nervous system after a life-threatening virus infected my body. I believe if I had not been able to seek out my own multidisciplinary care team and do the internal work, I would still be severely ill.

I am hopeful that my body will continue to heal, gain strength and be able to return to my work and activities. I want my story to help others see the post-COVID effects and increase the efficacy of treatment for patients like me.

I am grateful for the dedication of health professionals in the face of more waves of the coronavirus. I wish I had the privilege of receiving the vaccine before encountering COVID-19. I would have felt significantly safer and likely avoided these long-term consequences.

I encourage everyone who can get the vaccinations to do so immediately to avoid the possible short- and long-term consequences of this preventable illness that turned my life upside down.

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