As said to Nicole Audrey Spector
When I first contracted Covid in January 2021 I did my best to take care of myself but it was hard. At exactly the same time, my partner of 17, Richard, had lost his father to Covid complications a few months earlier – and now he too had contracted the virus. And he was much worse off than me.
Shortly after Richard fell ill, he was in the hospital and on a ventilator, his whole body attacked.
And then, a month later, he was gone.
Just like that, the love of my life was lost in the Covid death toll – one of the more than 1 million Americans killed by the virus. To say my heart was broken doesn’t describe the pain of losing him. I am still struggling with Post Traumatic Stress Disorder (PTSD). My brain has a wicked tendency to replay Richard’s last days on earth.
In the midst of all this grief and trauma, I’ve barely had time to realize that I still didn’t feel normal after “recovering” from Covid. The fever went away but I still had terrible fatigue, malaise, insomnia, brain fog, severe body aches and intestinal problems.
Eventually I went to the doctor to find out what was going on.
“Sadness,” said the doctor. “You’ve been through so much.”
This doctor would not be the last medical professional to attribute my symptoms to grief. Friends and family who knew about my symptoms did the same. I can’t really blame them. I had just lost my soul mate to this horrible virus and had to deal with all the ghastly estate matters that follow an unexpected death.
Of course I didn’t feel good. It might be weird if it was me.
So life went on in the looming shadow of death. I did my best to persevere while feeling generally uncomfortable. In January 2022 I tested positive for Covid again but by then I had been vaccinated so my symptoms were less severe than the first time.
But again, I never really got better. Despite testing negative, I generally felt under the weather and was in pain all the time. My sister suspected I had long had Covid in what are now referred to as ‘post-Covid conditions’.
Last May I made an appointment with a doctor. As soon as I shared my symptoms with the nurse who worked with her, I felt heard and validated.
“It sounds like you’ve definitely had Covid for a long time,” the nurse said. “The doctor will be very happy to speak to you.”
I could have cried. I was so relieved to finally hear that there was a reason for my suffering.
The doctor was equally affirming and compassionate. The more she heard about what I was experiencing, the more confident she was that I would be a perfect candidate for a nationwide study of long-Covid patients. I registered as a participant for the following June.
I’m grateful to be part of the study, but it offers no treatment, much less a cure. And it’s not helping my symptoms.
Every day I wake up in excruciating pain – literally from head to toe. Sometimes it takes me more than two hours to find the strength to get out of bed.
I make myself a cup of coffee to wake myself up. The smell of brewed coffee used to be one of my favorite smells in the world, but now it smells weird. Sour. That makes my stomach turn. My taste and smell have yet to return to pre-Covid normal.
The worst is the brain fog, followed by the joint pain and fatigue. I have occasional bowel problems and my vision is getting worse which can be another side effect of Long Covid. All of these issues contribute to my inability to complete basic tasks as quickly and confidently as I used to. My productivity has plummeted.
It’s hard to decide whether morning or evening is worst. While the mornings are more physically painful, the mental anguish is more painful at night. My thoughts race uncontrollably behind a fog of fear. Memories of my life with Richard and our time together – and how abruptly it all ended – keep running through my mind. I can’t blink them away.
In those painful moments, I often think of something one of the doctors taking care of Richard said to me while he was on a ventilator in a medically induced coma. She said: “If Richard survives, he’s going to be a long-distance driver and I really don’t think he wants to live like that.”
It was a pretentious and unprofessional thing to say to me. But it made quite a difference. When we had to make the difficult decision to take Richard off life support, there really was no choice. His body had been destroyed. But the doctor’s words echoed in my head: “I really don’t think he wants to live like this…”
And now I’m here. Living with long covid. And you know what? It sucks! But you know what else? In these past two years I have received more love and encouragement than I could ever have imagined. People came out of the woodwork to support me in my grief and lift me up from my despair.
So while yes, long Covid is extremely uncomfortable, to say the least, it is not the end of life either, nor is it the end of hope. At 60, I am as hopeful as ever—hopeful that I will continue to be able to strengthen relationships with family and friends, and that I will eventually feel healthy. I even hope to find love again.
By being part of the Long Covid study, I am doing my part to contribute to scientific research and ideally provide information that may lead to a deeper understanding of Long Covid and possibly even a cure one day.
So many people did not survive this virus, my love among them. I’m grateful to be alive and I can proudly say, “I’m in it for the long haul.”
This resource was created with the support of Pfizer.
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