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'Chemo was easier' local COVID long-haulers open up about their struggles

Brain fog, extreme fatigue, shortness of breath, muscle aches and headaches, these are just some of the lingering symptoms experienced by COVID-19 long haulers.
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Coronavirus file photo

Brain fog, extreme fatigue, shortness of breath, muscle aches and headaches, these are just some of the lingering symptoms experienced by COVID-19 long haulers.

There’s a support group in town called the Post COVID Syndrome Support Group offered by the Prince George Hospice Society in their Solace Center that only has four members attending - three in person and the fourth through Zoom.

Everyone knows there are more people out there left with life-changing after effects of the coronavirus but it is believed by organizers of the group that the stigma surrounding the virus has kept people isolated at home instead of reaching out for support.

Two members of the group who wish to remain anonymous spoke with The Citizen about what it’s like to be afflicted with the disease and all that comes with it. Neither wished to disclose how they got the virus.

Carol (not her real name) is 55 and feels like she has lost herself.

Marie (not her real name) is a 39-year-old physically active mom of two young children, who said time spent with her children has declined in quality and it’s heartbreaking.

Both women had thriving careers serving in the Prince George community.

After having the dreaded coronavirus - Carol in December and Marie in January - they are still struggling with health issues with seemingly no end in sight.

The worst part for both Carol and Marie is the brain fog and extreme fatigue that has plagued them for months.

Carol tried to return to work but despite using coping strategies to help with her short comings - brain fog, memory loss and utter exhaustion - she couldn’t continue, while Marie knew she would not be a safe and effective worker in her present condition and hasn’t been back to work since she got COVID-19 for fear she would inadvertently put others at risk.

“I did not have a fever, I did not have a cough and I did not lose my sense of smell and taste during that time,” Marie described the onset of her COVID-19 symptoms. “So the three main things that they screen for every where you go? I didn’t have any of those.”

Marie’s husband got the virus first and didn’t exhibit most of the typical symptoms but he just felt off and they decided to get tested to be safe. Three of the four members of their family tested positive. They self-isolated quickly.

“And we didn’t spread it to anybody - I’m so happy to be able to say that,” Marie said.

One of the most difficult parts of the process is to advocate for themselves about the lingering effects of this deadly new virus.

“One of the hardest parts is to be struggling with this, know it’s real, and be absolutely exhausted and have this much energy (as she pinched her index finger and thumb tightly together) to do anything and then have to fight and advocate and prove what’s going on - when  you’re vertical and you look normal,” Marie started and Carol finished the thought with a nod of her head.

Marie said the altered taste and smell were very disturbing. She used to eat a banana almost every day and now they taste of rot. She randomly still smells phantom cigarette smoke, feces, exhaust and something that smells like an electrical fire while the real smoke from the wildfires wasn’t something she could begin to identify.

What’s the hardest part?

“Feeling like I’m not there for my kids and feeling like I’ve missed out on six months,” Marie said tearfully. “I don’t have the energy or stamina to do the things I love to do with them - like skiing - I had to stop abruptly - both cross country skiing and downhill skiing - all that in the winter stopped abruptly - and they’re spending a lot more time on screens than we usually do and that’s not how our family functions - but I worked part time for a reason - I love being a mom - I love spending quality time with my kids and they’re getting older now and pretty soon they’re not going to want to hang out with me and I’ve missed a big chunk of time. So I try to do something with them - even if it’s just baking and I’m still in my pajamas. That’s been the hardest part for me.”

None of her family presented with serious symptoms in the acute stage of the virus and the family is very grateful for that but the lingering effects are heartbreaking.

“I still don’t know what the future holds for any of us,” Marie said. “My daughter recovered quickly, my husband has recovered, but do they have lingering effects? And the same for me - like when I get the numbness in my face and these headaches - is there something messed up with my brain? I don’t know - when you read articles about links to dementia I wonder what this means. I am somebody who has lead such a healthy life and make healthy choices because I want to be around for a long time for my kids and now that might be taken away from me. My future is unknown.”

When Marie heard about the support group she was reluctant to attend, thinking it was just one more thing on her plate to deal with, she said.

“Now it’s the best part of my week,” Marie said. “People here totally get it. You don’t have to explain anything - they just get it. And we laugh. And I talk more here than I do at any other time in the week. We just get each other.”

Carol got COVID-19 just before Christmas.

“When my taste and my smell went I knew I had to get an appointment to get tested,” Carol said.

The test was positive for COVID-19.

As a breast cancer survivor, Carol seemed to be most vulnerable in her lymph nodes under her arms and another symptom of COVID-19 resulted in her lymph nodes being severely swollen.

Her other symptoms included fatigue and nausea, fever and body aches.

“Everything on the COVID check list I got except for the vomiting,” Carol said. “Chemo was easier - there’s a statement for you - chemo was easier.”

There was a metal taste on her tongue and in the acute stages of the virus Carol would wake up with a thick coating in her mouth she would have to peel off.

“With COVID there is no end in sight,” Carol said. “Just when you think you’re all that you’re not.”

Carol’s energy has depleted so much she can’t even clean her house.

She finds that when she exerts herself she crashes 48 to 72 hours later.

“So you try to find a cycle in your energy onload - as they call it,” Carol said. “But it’s exhausting.”

To make matters worse, when Carol got her first vaccine against the virus it made everything worse and she experienced complete memory loss of certain situations.

Other side effects included her lymph nodes again.

“This time the swelling was so bad it looked like I grew a third boob,” Carol said.

The long-haul symptoms seem to exacerbate any vulnerabilities in the mind and body. If a person is prone to headaches, now they are worse. If concentrating was a problem, now it’s worse. If there was a problem with a knee, now it’s worse.

Carol’s smell is returning slowly. She’s able to smell the worst things but never completely.

“Right now I’m at about 60 per cent of what I used to be.”

And she has noticed some recent improvement. She said about a month ago she would’ve said she was at 50 per cent so recovery is slow moving.

There are only four post-COVID syndrome clinics for the potentially 40,000 or more British Columbians who could be suffering from the after effects of the virus. All the clinics are located in the lower mainland. No word if there will be one put in place in the Northern Health Authority in the future.

Both Marie and Carol are part of St. Paul’s Hospital clinic.

The best part of that Carol said is that you don’t have to prove that you’re sick. Patients are taken at their word that the symptoms they say they have are real.

Carol said when she had her virtual appointment with the St. Paul’s Hospital doctor the word ‘hope’ was a big factor.

“The doctor told me that if I did what I was asked to do - self care and to pace myself - that I would get better,” Carol said. “To me hope is a big word - hope coming out of cancer - hope coming out of this - the word hope is huge for me and the doctor said I would eventually find myself again - and that’s the hope.”

For more information about the Post COVID Syndrome Support Group offered at Prince George Hospice where your privacy is ensured call 250-563-2551 or email info@hospiceprincegeorge.ca.

For more information about the post-COVID syndrome symptoms and clinics visit http://www.phsa.ca/our-services/programs-services/post-covid-19-recovery-clinics.

This is a piece that Marie has written about her experience with Post Covid Syndrome:

Long Haul Journey

Every day is difficult, some days are more difficult than others

You look like you are feeling better

This illness is invisible

I feel exhausted all the time, but I can’t sleep

It is not unusual to feel a bit tired after having COVID

Sometimes I cry out of sheer exhaustion

My body feels heavy like lead

That’s because your Ferritin is low

I have never felt this poorly when my iron was low before

My world smells of cigarettes, exhaust and burning rubber, yet I can’t smell what is real

Stop focusing on your symptoms

It is difficult when my amygdala is constantly in overdrive thinking there is a fire

I can’t taste the foods I know and love

It is to be expected

That doesn’t make it any easier

My headaches feel like a jack hammer in my head

Drink more water and take some Tylenol

These headaches are debilitating, and they don’t respond to analgesics

I have brain fog and I am easily overwhelmed by too much stimulation

Have you considered antidepressants?

My executive functioning is affected; I am not depressed

I am not myself…I am tearful, angry, irritable and impatient

Seek counselling

I am frustrated with my situation and grieving the loss of my former self

My symptoms are not normal

There is nothing I can do for you

I just need you to listen

I can barely function at home; how can I be expected to work?

What if you tried returning to normal life?

If only it were that simple

I stay at home most of the time

You should come over and hang out

Being around people and socializing is one of the most difficult and draining activities for me

My right arm is weak and painful, and I have limited range of motion

You must have injured it

How could I injure my arm by doing nothing?

Half of my face feels numb

Your symptoms are somatic

I have never experienced this before having COVID

I can’t exercise at all despite being physically fit

Exercise more

That is the worst thing I could do to my body

My pulse is sometimes irregular and goes up drastically with minimal exertion

An ECG is not necessary

It is not normal to get tachycardia from standing up or putting on socks

My chest feels heavy

You are experiencing anxiety

When I am anxious, I can run

My chest is burning

Your X-Ray will be normal

It wasn’t and neither was the next one

My chest feels like someone is sitting on it

Your O2 Sats are fine

I still can’t take a deep breath

I can’t breathe

Our next available appointment is in three weeks

Pace yourself

I can’t breathe

We need you to fill out all these forms

Pace yourself

I can’t breathe

We need more information before we can make a decision

Pace yourself

I CAN’T BREATHE

Long COVID, Post-COVID Syndrome, Post-Acute Sequelae of SARS-CoV-2 infection, whatever you choose to call it, is real. Today marks six months since I started experiencing symptoms of Covid-19. Above are just some of the symptoms that I have experienced or continue to experience during my journey. I have merely been existing for these past six months and I have been mostly unable to fulfill my roles as Mom, or Wife. I have been unable to return to work as an RN.  I feel as though I lost part of myself in January. I hope to reunite with her one day. This writing is not just a reflection of my story, but a reflection of what many Long Haulers have experienced since the start of the pandemic. It is estimated that as many as forty thousand British Columbians are considered Long Haulers. I created this post, to share my experience, but also to bring attention to a lesser-known aspect of COVID-19.

I have given myself permission to feel what I need to feel, the space to just be here, exactly who and how I am, and to find my way forward, gently. If you have friends, family or co-workers who are experiencing these symptoms, they may not need your help, but they do need to you to be aware and be willing to hold space for them.