The Long Covid Collective

My covid story! Hi my name is Ginny I am from Orlando, Fl

45 years old

My close circle of friends always amusement park bound with a cocktail in hand as my friends and I walked around and made memories. I was always known for my tag line, “Lets meet for cocktails after work.”

Health issues pre-covid high blood pressure, IBS, depression and severe anxiety. Still on the road to my dream job 5 years in until March 2020 hit us all.

Thankfully I was not furloughed during this time but I began my new way of life working from home and seeing my parents once a week per usual for dinner and laundry. They live close to me so I am very lucky to see them once a week. However, this also began my extreme hermit lifestyle. Grocery delivery, neighbor taking my trash out and when I would go home to see my parents once a week my routine began. Down 17 stairs, in the car, drive to them pull in garage and stay inside to repeat the same to return home.

Talk began of a vaccine and each night I would check the drug stores websites in a 60-mile radius to try and get the first appointment I could grab. It took some time but I thankfully had received my 2 shots of the vaccine.

This is now what my life looked like not seeing my friends, staying in, food delivery, and work from home. Honestly, I was kind of ok with it for a while.

Finally, an in office day, which was amazing, and did I wear a mask?............NO

Everyone was vaccinated so I thrilled to see everyone. Hugs all around and my favorite part of the day closing time “Lets meet for cocktails” and that is just what we did. The smile on my face and that feeling of entering the world again felt amazing. Laughing and joking, sitting outside to be safe of course, (still no masks worn by me) and all hugs goodbye.

Twenty-four hours later I feel under the weather, but of course I tell myself this is a good old fashioned cold. I had not been around other people or in other places since March of 2020. My body needed to get reacquainted with the world. Soup and hot lemon water a good night sleep and I could handle this. Welcome back to the world, I told myself.

The next morning “the flu” hit hard. I was going to be taken down by this cold, off to my parents for my two days off so I can rest there and get better. As soon as I arrived my parents knew this was different and off to the drug store we go for a Covid test. (In my heart I knew I messed up)

July 27th, 2022 with one word my world changed “Positive”

From that date until about October my memory is almost missing. I had to rely on my parents with this part to piece the story together. My doctor was called right away, and I was placed on Paxlovid, the only antibiotic at the time to assist in treating covid, and a steroid as it was becoming increasingly hard to swallow or breathe. Should I have been hospitalized?................... Let’s just say it was a little too close to for comfort. Being home, I was able to have much better care 24 hours a day from my parents as whatever I needed it was right for me. The many, many trips my father took to the drug storefor any and everything I needed for each symptom that would arise to alleviate any or some of the discomfort I was is. That I can truly say is why I was able to say I survived the initial covid part, at least what we knew of it at that time. Along with the difficulty swallowing the main symptoms I was having were extreme fatigue, insomnia, hot flashes, cold chills, brain fog, no appetite, constipation, diarrhea, joint pain, ringing in the ears, falling due to muscle weakness, emotional anger, sadness, and depression. Once I began to feel slightly better the heavy anxiety set in. The anxiety was not only from having the virus it was the missing work, medical paperwork, trying to make my doctor at the time try to understand how sick I was via televisits almost weekly.

Showering became my biggest challenge; will I shower today? Can I stand that long? Can I walk to the bathroom to shower? I sometimes showered twice a day pre-covid that is why this memory has stuck with me. Even today it is a good day when a single shower has been had.

I quickly found out my current doctor did now know much about Covid, and this began the journey of trying to get in to see one of the two Covid clinics near me. The appointments were for mid-2023. At that time it seemed a world away. Since October 2022 I have made multiple attempts to return to work each time having a relapse. This began what I now understand to be Long Term Covid, or Long Haul Covid.

By the grace of God, I was able to get an appointment with a Covid clinic in Lakeland, FL (my mother had been calling every day checking for a cancellation which I was unaware). My parents and I were thrilled. I also was able to see a new Nurse practitioner that ordered a slew of blood tests. One in fact came back and I found out I have Hashimoto’s disease, an autoimmune disorder that can cause hypothyroidism and I began a new medicine. This was the first person to acknowledge that I was suffering from Long term covid. For the first time in months, I did not feel crazy.

At this time, May 2023 each day I reach into a grab bag of all symptoms never knowing which one will attack me today. I still get very fatigued by doing very little, this includes any stress on my body. For example, I just had dental work done and it is taking double the time to heal, and my body feels like it has taken a beating. The brain fog comes and goes which can be extremely frustrating. The anxiety and depression are still hanging on but thankfully I have pathways to assist with that portion of it.

My depression is mainly from going down what I call the rabbit hole of long covid. Watching too many videos, looking at toomany websites, having people tell me I look and sound fine, and not knowing how far I can push myself each day. I wake up already thinking about what will happen to me tomorrow depending on what I might do today.

My strategies at the moment are to stick with the communities I have found on social media. Connections I have with complete strangers that now feel like my very own “long covid blanket”.

At this time, I do not feel I have a so called Covid doctor by my side so my quest continues with that.

I would not wish this long term covid on my worst enemy. I knew there would be no magic pill for this but in saying that, I wish the multiple doctors that I have seen would not have been so dismissive, and/or, flat out rude, but would have shown a bit more compassion, I would find it easier to refer to them as Long Covid Physicians.