Remember the hundreds of times I told you “You don’t want this. Not for you, your kids, your grandkids, your colleagues, your community?” I & many others warned you that the decline was turbo-charged, that we lived in our bodies & we KNEW we were dying. How we literally begged you to embrace mitigations to be safe but also to DO something to force your governments, public health, school boards, & all of those in power to shut down forward transmission, prevent the potential for variants to develop, spread, & evade vaccines that were woefully infective due to being behind the curve? Do you remember? Did you listen? Did you DO something? I hope the answer is yes because, if not, you have been complicit in damning the children to #CAIDS. AIDS caused by a SARS-CoV-2 infection or, more likely, repeated infections. It is not too late for you to pivot (if you are someone who hasn’t been doing everything in your power to stop this virus from disabling & killing) & do your part to stop more children from becoming #LongCovidKids. I have faith in you. Do one thing, something, tomorrow.
Friday, March 13, 2020.
They breathed out. My husband breathed in. My husband breathed out. I breathed in.
I am in my sixties, with an underlying condition that could kill me if I contract covid-19. The only thing more stressful for me than explaining to my mother, in her eighties, why she shouldn’t go to choir practice or the bridge club, is seeing young people do this.
I woke up ill on Monday, March 16, 2020.
My temperature was soaring to 103 degrees and dropping to as low as 95.4 degrees. A family member told me that was not possible and I needed a better thermometer. I had chills, my limbs shook uncontrollably, I experienced deep body aches, nausea, diarrhea, loss of appetite, and my left big toe turned purple. When standing up from a lying or sitting position, my heart raced, and I felt so dizzy I had to steady myself. I lost 13 pounds, going from 96 to 83 pounds in four weeks. I lost my hearing in my left ear completely (although that came back after my first Pfizer booster in 2021.) My face collapsed.
By mid-May, most of this had resolved, but not all. At the end of May, I reported all of this to my general practitioner.
At the time of my infection, testing was only available in my Province if you had three symptoms: fever, cough, and shortness of breath. I didn’t qualify. My infection was never PCR confirmed and, therefore, never counted. In my private life that mattered because my family did not believe I had been infected and, it follows, have never believed I have Long Covid.
I had never experienced anything remotely like this infection. It was absolutely terrifying. My husband, meanwhile, was asymptomatic.
A novel virus, indeed.
I had a presumed case six weeks ago. After recovery, I have experienced a severe hyper-reaction to chemicals in wipes, cleaners, etc. Dizziness, light-headedness, nausea. It’s scary. I haven’t seen other reports of this. Maybe useful information?
Sometime between the acute phase and the Summer of 2020, I realized I was not improving. Some of the symptoms from the acute phase had not resolved, and new issues arose. My appetite had not returned (still hasn’t) and it was nearly impossible to regain the lost weight. I was writing in my notes about the horrendous exhaustion, so intense that I could only manage a shower every few days, if that, and could not perform even simple household chores. Small, red dots were appearing on my torso, mainly, but also on the limbs. I wondered if they were some kind of clot. A dry, painful rash developed on one side of my face, and it has never resolved. The blood pooling in my feet became more pronounced over time. Vertical ridges developed on my nails, which became thin and tore off easily. I almost always have at least one wrapped in a bandage.
Most alarming were the severe gastrointestinal and cognitive issues.
Now is a good time to note that I am not one of the Long Covid patients who went from healthy to disabled, from living a full life to being home or bedbound. I have had health issues almost my entire life, and the gastrointestinal issues were serious enough that at the end of 2015, I medically retired myself, nine years early. However, between 2016 and March 2020, although my life was limited, I could visit family occasionally, attend medical appointments, work with my personal trainer twice a week, and do household chores such as making the bed, dusting, cleaning the bathroom, and emptying the dishwasher. All impossible after the SARS-CoV-2 infection. Other than the trips to the pharmacy a few blocks away for vaccinations, once they finally became available, I have not left my home or seen another human being, aside from my husband, in person since Christmas Day, 2019, for two reasons. First, my g/I issues demand that I have access to a bathroom every 15 minutes or so. Second, it was made very clear to me that the mitigations required to keep me safe from re-infection would never be put in place. I had become inconvenient.
When the cognitive issues developed, I was petrified. I suddenly had trouble with word finding. My short-term memory became frustrating and upsetting. I could not concentrate. I have not been able to read a book post-infection and struggle with news articles and research studies, going back to the beginning repeatedly as I lose my way. In the early days, I did not know what was happening but described it to my husband as a heavy blanket coming down on me, and I struggled under the weight of it.
Throughout the Fall of that year, I worried about what was happening to me. I was scared, isolated, wondering if similar issues had arisen for others. I had no idea.
I was about to find out.
In November 2020, I started seeing people using the phrase “long haul. ” They were still sick like me, people who had not recovered. In my little corner of the Internet, I did not know that there were already patient support groups or that there were Long COVID Clinics in some places. I started to read that those patients had named our disease “Long COVID.”
Replying to @JuddApatow and @donwinslow
Also GI. I got sick in March, lost thirteen pounds I couldn’t afford to lose, and can’t leave the house because the GI symptoms are so severe they run my life. (Also went deaf in one ear). We don’t yet know anywhere near enough about the long–haul problems.
It was a relief. That probably sounds terrible but it meant I was not alone. That changed everything.
I began finding and following other patients. Reading and trying to comprehend research studies. And I started warning others as loudly as I could: “You Don’t Want This,” sharing in great detail my symptoms and struggles. I shared the few articles that I saw in the media. I dealt with the vilest of trolls and bullies daily, but somehow I kept going,
In late May 2021, I reported my situation to my doctor during my telehealth appointment. He knew about Long Covid. He diagnosed me with Long Covid. He wanted to refer me to a newly created Long Covid Clinic. I declined because my G/I issues would not allow me to attend.
Replying to @BarbLarochelle
What infuriates me the most, as a long-hauler and a human being (!) is the minimizing of the risk to children. There is virtually no, if any, data on long–haul issues for kids. They must be protected. I cannot abide this callous disregard for their well-being.
For the rest of 2021 through the summer of 2023, I watched as others gathered (unsafely) for birthday parties, to celebrate holidays and family traditions, and to visit relatives in other cities, Provinces, and even countries. When this all began to happen, in 2020 actually, I was confused. As time passed, I became worried, hurt, and then angry. The events leading up to the celebration of a very important milestone in 2022 shocked me to my core. It was now absolutely clear that what I came to call FamilyTraditions™ were more important than keeping me safe. I discovered that a narrative had been made up about me and retailed far and wide. That narrative was a lie. I could never imagine such abject betrayal but, over time, I got used to it.
In late May 2022, I updated my doctor. He was empathetic and kind. However, the following year, something had changed. He opened the appointment with, “I understand you are still sheltering…” and it went downhill from there.
And then, Twitter went down one summer day in 2023, I think it was a Saturday. The only thing I could see was something called a “Space” being hosted by @sasswashere and @SleepyJim0. I went in and listened. For the first time, I heard the voices of other Long Covid patients, the voices of the Covid conscious. I had no idea Spaces existed until that day. After a few hours, I requested a mic and told my story, sobbing through most of it.
I made friends that day who are in my life to this day—precious friends. One day, someone suggested we needed a resource hub for COVID-19 (SARS-CoV-2) and Long COVID information. So, my husband and I built it: https://covidtoolbox.com. We update it regularly. It was thrilling because we were doing something useful.
The first half of 2024 was the most stressful period aside from the acute phase. Social media can be brutal. The details aren’t necessary. That said, I was invited to join a group of patients I trusted (and still do) to a private Discord channel, perhaps one of the most important events on this road.
For several days leading up to LCDC, the demonstration organized by patients to raise awareness about Long Covid in Washington, D.C. on March 15 (International Long Covid Awareness Day), my husband was unwell and had strange symptoms. At first, we thought he might have been reinfected. He had not. On March 15, as I watched the livestream of LCDC, he packed a bag, called a taxi, and went to the Emergency Room. Several hours later, I received a text from him telling me that he had a heart attack. A few days past the day he had been infected four years earlier. He had no risk factors. A stent was placed, but the most severe and stubborn problem was the massive inflammation around his heart.
I notified my mother, one of only three family members I am in contact with, and then my Discord friends. They were there for me, day and night, throughout the nine days he was hospitalized. I was utterly alone and barely able to care for myself. They helped me, supported me, and worried with me. I will never be able to express my deep gratitude to those very sick patients with Long Covid for their support. Never. I received text messages from the family members who had lied about me, which I ignored. And I received two text messages with no follow-up from my only cousin who lives here. I heard absolutely nothing from anyone in my extended family. I learned months later that at least some had not been told. Safe to assume that none of them were or, if they knew, they didn’t care.
Over the coming months, my husband went through and completed rehabilitation and is now doing very well.
Our little band of Discord friends gathered to check on each other daily, share concerns, tell stories, laugh, cry, and rage together. We have been on road trips to beaches and parks, a walk through a beautiful city, and shopping outings huddled together in our little channel.
For various reasons, there were fewer and fewer Spaces for Long Covid patients, and on Easter weekend, the LongCovidLand Sunday Brunch Space, hosted by @caffeinatedT launched, and I had the honour of being one of several co-hosts.
Following one of those brunches, a patient sent me their blog about their experience with Long Covid. With their permission, we started a page on the Covid Toolbox called CHRONICles, and began gathering and sharing the stories of others. It soon became evident that a permanent repository to share and preserve the stories of patients was needed, so my husband and I created this site: LongCovidland.com.
I have been sick every single day since March 13, 2020. Exhausted all day, battling G/I and cognitive hell and facing down fresh, scary symptoms that keep emerging. It has been isolating, bewildering, enraging. Being left by the wayside is a cruelty I wish on no one. And there are millions of us. We have been betrayed by our governments, public health, the medical community and, in far too many cases, our friends and families.
I want to get better and have at least a little less restrictive life, clearer thinking, and no more pain. I want to see other human beings. I want to go outside! I want that badly, but I sometimes think it is out of reach, at least for me.
One thing that MUST not happen is that our stories must not be lost, buried, or ignored. They must be shared and preserved for the record and for history.
I will end with two things.
My pinned tweet.
You can’t rewrite my story. You can’t revise my life to suit your purposes. You can’t indefinitely retail tall tales about my reality with impunity because the truth will come out. It always does. You can’t rewrite my story. You don’t hold the pen. I do.
And yet another warning.
Replying to @1goodtern
You don’t want this. Not for you. Not for your children/grandchildren. Not for your friends, your co-workers, your community. You. Do. Not. Want. This. Trust me.
Submitted September 2024