itsnotjusttheflu

a collection of first-hand accounts from people dealing with COVID-19. these are stories from patients, healthcare workers, families coping with loss and others

By Lauren

I am, or was, a Detroit public school teacher. First grade. We had to finish off the week in early March. You couldn't find hand sanitizer. I went to over ten stores. I eventually found some rubbing alcohol and aloe vera for the kids to use. My coworker got sick and was put on a vent. My security guard was super sick and not allowed to go home. We assumed it was going to be 2 weeks.

The first week home was like a terrible cold. Then I was out. I slept almost 20 hours a day, in a pool of sweat. The TV remote would be next to me, but I couldn't garner enough energy to grab it. I spent all of April and May watching a screensaver on the Roku and hobbling to the bathroom.

I could not get tested in time because I wasn't “critical”. I had worked closely without masks with my positive co-worker the day before she went on a vent, 110 pulse, 94 oxygen. No test.

I got a holter then an event monitor from a cardiologist that was reading 190 for heart rate. I often cannot breathe and 4 months in, I'm still sleeping most of the day.

I lost my job and have no insurance and no future. It's not the flu.

By M. M.

My symptoms began late December. Between Christmas and New Year’s my palpitations and shortness of breath were so bad I made an appointment to see my Doctor for Dec. 31st. Dr. Did blood tests and EKG and found nothing wrong, suggested I see a cardiologist, which I made an appointment to see for February 2nd. I began coughing and feeling congestion in my chest by early January. I went to the Urgent Care twice that month with complaints of bad Shortness of Breath and chest congestion. I was tested for the flu and it came back negative. Dr. brushed me off and claimed it was just a winter bronchitis, gave me prednisone and nebulized Albuterol. The second time I went I was also brushed off.. I requested a chest x-ray and was told it was not needed and that it was just my asthma coming back (I had asthma as a child and I’m now 45), I told them I knew well what asthma felt like and this was NOT my asthma coming back, they ignored this.

I spent all of January sleeping in the sofa as I felt more relief in that position. I bought a nebulizer and used it, along with OTC decongestants all month. At this point I realized the problem was my lungs and not my heart and skipped my cardiologist appointment. I began to breathe better by mid-February and I let my guard down (Stopped the herbs and OTC decongestants I’ve been taking. This brief pause only lasted a couple of weeks, by early March my SOB came back, along with weird flushed of fever that seem to creep up my body and burn my face... I thought maybe I was getting menopause. Fatigue became stronger and I had a hard time taking the long walks that I always took. By mid-March they shut down my workplace and I was grateful that I could stay at home and finish healing. My shortness of breath became worse and worse until on April 2nd I ended up at the ER. They claimed my oxygen level was fine, even thought it went down to 92 during a walk test they had me do. They claimed I wasn’t sick enough to stay and sent me home with two antibiotics. I had Extreme SOB for two straight days after ER visit and by the third I began to feel better.. I was happy that the antibiotics were working and thought this might finally be the end of it; The Covid test they did at the hospital came back negative, I was told it didn’t matter because they were getting “numerous” false negatives and they have ruled out everything else.

Two weeks after my ER visit, I came down with my highest fever yet, 102+ for two days and lost sense of taste and smell, this lasted about two weeks. I had been quarantined since my ER visit and was instructed to remain at home until I have no fever for three consecutive days... by late April I had my first three days fever free and began to go out for some needed sunshine and very brief walks to the park. By mid-May I felt GREAT and just KNEW I was out of it, it was then that I made the mistake of finishing a half-bottle of wine I had leftover since I was last feeling well in late February/early March. The next day my SOB and fatigue came back, I’ve had low grade fevers on and off and SOB through today, I don’t see and end in sight.

I visited the ER again on 8/7/2020, I had gone to a LabCorp to have a blood test done and my oxygen levels dropped to below 90... I took a cab to the ER and they found “minimal lung scarring” and “hyper inflated” lungs, they sent me home and I made appointment with a new Pulmonologist and the Cardiologist I never went to see in February.

I have two oximeters and my Oxygen is always low. I’ve been on the Stephen BUHNER protocol since mid-May and added a new Lung support supplement two days ago. This seems to have given me a Herx reaction and I was not able to sleep , my oxygen levels briefly dropped to the 50’s last night.

I also want to add that the disbelief of all doctors I’ve seen is something I would never have imagined. One pulmonologist I saw told me my oxygen could’ve never dropped to 88 or else I’d be passed out.. told me my lungs were great and told me he could no longer help me. My primary doctor tried but is totally at a loss, doesn’t know what to do with me anymore. I’m afraid about my oxygen levels dropping at night and will ask the new pulmonologist I’m seeing oxygen for the apartment so I can have peace of mind. I reached out to the Mount Sinai post-Covid clinic for help but they refused to take me because I never tested positive. I’m tired and scared.

By Darren

My symptoms started out of nowhere on a Sunday afternoon. I was working from home and sitting at my desk when I started to not feel good. I couldn’t explain what didn’t feel good or how I didn’t feel good but something was off, maybe I ate something I shouldn’t have?

Fast forward an hour or so and the chills set in. No fever yet, but checking constantly while googling what might be happening. Chills continue to get worse but still no fever for an hour or two. Then the fever hit and continued to climb and the chills turned into shivers and the body aches set in. Within a few hours I went from completely fine to a 102.7 fever, the worst chills/shivers I’ve experienced, body aches and a headache.

Went to the urgent care, got tested, had x-rays taken of my lungs and heart, everything checked out and was sent home to isolate. I received my results that following Thursday that I was positive.

That following week was hell. I would go through severe body temperature changes. Shivering in the fetal position to sweating in seconds. A headache that wouldn’t go away. Body aches, unable to sleep, unable to eat, and a temperature that was never under 100 degrees. A couple days in my gums started to become inflamed and no one really knew why, it hurt to do just about anything that involved moving my mouth.

The night time was the worst and I could almost set an alarm to when the symptoms would become unbearable. My fever would spike, the chills and shivers would come, the body aches would worsen and I wouldn’t be able to sleep.

That next Saturday, my fever broke and I was finally to get some rest. I never had a runny nose or cough and I kept thinking to myself that as long as I could breath that I would be ok. Sunday morning my symptoms went from chills and body aches to feeling like I had a really bad stomach flu. Nausea that would come in waves, constant running to the bathroom after trying to eat, my gums were still inflamed, so eating was difficult enough. This lasted until Wednesday, the nausea would come and go but food was never really appealing anyway. At this point I was just exhausted and ready for this to be over. The nausea and food aversion continues for a couple weeks as did the nausea and the inflamed gums.

Overall it took about a month for me to start feeling back to normal. It’s now been 6 weeks since my symptoms first started and I’m still abnormally fatigued but that’s slowly getting better. I ended up losing 15 pounds and almost 2 weeks with my family. I’m thankful everyday that my 1 year old son never exhibited any symptoms because I wouldn’t be able to live with myself if I had exposed him to this.

This isn’t the flu or any normal virus. This was a month of my life that was unlike anything I’ve experienced and hope to never experience again

By Sue R

I mentioned to my husband, back in the first week of March, that I'd had a weird minor sore throat for a few days – he said, that's weird, my throat's been bothering me too.

We played out in the snow for hours, and that night I stayed late working outside – I got way too cold, and barely slept. When I woke up, I realized, oh my God, I am struggling to breathe. My chest hurt with every breath.

I was like, no, it can't be. No way. Our community had no reported cases, and we're real isolated (rural Alaska).

Still, I was like, okay, this is happening, we've got to do the right thing. So I called my husband home from work that morning. He didn't go back for over eight weeks.

It was so strange – like zero to sixty in ten. I had a sore throat, and then suddenly I had full-blown viral pneumonia, just overnight.

The next few days, my breathing got worse, and more painful – deep, sharp pain, deep in my lungs with every breath. I was tired and spent a lot of that time in bed. My husband was sick but said he wasn't as bad as me (could've been a lie to get me to rest).

We initially were afraid to report it, because we were afraid that if we tested positive, they'd take our kids. But our kids were obviously sick too (my baby's chest was crackly under my hands), so we started making calls to the state health authority. Got laughed at, told there was no way. Great. I kept calling – I felt like it was our duty to alert the community, but no one wanted to listen, or no one who did listen had the ability to do anything about it. We hadn't had a fever, hadn't traveled – so we couldn't get a test.

The breathing got more painful, more difficult. Thankfully I'd panicked and bought a little pulse oxygen finger thing a month before, so we were able to track how bad our breathing really was, for the whole family – luckily, although our numbers dropped, we felt comfortable staying out of the ER.

I sat up and finished a project on my computer, in case I didn't make it. I found out I was pregnant, not planned. That was scary. I felt great sometimes, and then gasping for breath hours later. And regardless, pain with every breath.

When I felt better, I'd cook, and get so frustrated that all my cooking was tasteless. So bizarre – I could still register salty and sweet, and I could feel the outside of my lips burning as I poured on more and more chili powder... but nothing else. My nose was perfectly clear, too. I even wrote an Amazon review for some new hot sauce, saying, “wow, so mild and strange and sweet!” Ha. That while part was truly bizarre, like nothing in my experience.

Eventually, after a week or two, it turned into bronchitis, and then just into a cough, and then eight weeks later I was better, and then I miscarried our baby. Who can say why?

The whole time I was sick, I'd noticed I'd developed this strange, flip-flopping, bubbling sensation in the center of my chest – it would happen for a few seconds at a time, and I'd feel really odd all over. I assumed it was a pregnancy symptom, but it's been three months since the miscarriage and the intermittent bubbling in my heart is still there. I'm guessing it's Afib or something – something isn't quite right with my heart.

I keep thinking I'm having an allergic reaction – I have a number of food allergies – I keep struggling to breathe after I eat. It took me a while to put it together that I can't breathe because my full stomach is compressing my now-compromised lungs. Sometimes I have trouble catching my breath at ordinary times but mostly I notice it after I eat. That's new, too.

One last thing I want to share for these numbskulls who think this is nothing – my youngest child, now a toddler, wheezes and gasps when he plays and laughs and rough-houses with his brother. I keep grabbing him, telling him to rest, until he can catch his breath – is this what his lungs will be like forever? It's been five months... He wasn't even that sick. The kids never stopped playing.

People are so used to infections being “harmless” because we've developed vaccines or cures for all the really harmful ones. Mumps makes you lose your hearing, but nobody cares anymore about that. Strep throat used to give people heart disease before we had antibiotics. That's what killed Beth in “Little Women!” People forget. People are so frustrating. In my little town, people get on Facebook and rail against the city's protective measures, saying it's going to cripple our town... I wish they could listen to my son play.

Thanks for letting me share. I hope this project helps!

By B Rian

Got a mild cold. Slight fever(like being in the sun on the beach) and no sense of smell/taste for 3 weeks. Anxiety through the roof about how the gov was ruining the economy was/is the worst part.

By Ellen

My family consists of my husband-59, my two daughters 19 & 16 and myself 55. We have stayed in our neighborhood since lockdown, not traveling more than 15 miles. On 7/10, the 4 of us went to a virtual reality cafe for my husband’s birthday (he’s a big geek) The place had four rooms set up, the dividers were thick black nylon curtains, the front of the room was just a thick clear curtain. This helped the workers of you needed assistance. We put on tight, thick goggles. The reason I am telling you this is because this was the ONLY place we went, out of town. Also, it was located in a very large mall.

That was Friday, on Sunday my 16 yr old and I went up to Long Island to visit a good friend and hit the beach a few times. The night before we left, I had a small productive cough and my voice was raspy. No discomfort whatsoever. We made the trip in good time. We even had time to drive over to the beach. Before I went to sleep that night, my cough really picked up and I had laryngitis. Next morning (Monday) it hit full force! I never felt worse in my life. I had the worst sore throat, a productive painful cough, dizzy and incredibly weak. By Tuesday my friend took me to Urgent Care. I received 2 COVID-19 tests and a pneumonia test, all positive. I stayed at my friends home an extra week. I am bipolar and depression and packed only meds for the short stay we planned and my friend didn’t know I had those meds in my bag to take. On top of being so ill with COVID and pneumonia I was in full withdrawal from about 5 strong psych meds.

Somehow (foolishly) I made the trip back to PA way too soon. It took 6 hours and I don’t know how I made it home alive. When I came home I was extremely weak, still having paranoia.

The worst part and the one thing I wanted stress the treatment I’ve received from family, friends. I developed a severe toothache, I explained the situation with my dentist and was told I needed a retest before they will see me. I wanted to ask them if they would do the same to a HIV positive patient? Luckily, I am being re-tested on Monday. I’ve had a few friends follow up to check up on my family and I. Family stayed as far away as possible. This illness was a very sad eye opener.

By doesn't matter

Got Covid, started out with chills and a very light throat tickle/soreness. The soreness appeared about 3 days before I got tested and only appeared when i woke up and went away after an hour. But then I got a fever and it prompted me to get tested. Little to no cough throughout my entire journey. Eventually like 3 days after finding out I was positive I got so much throat pain and I thought It was infected so I got a Z Pack and it got like 50% better every day. BY DAY 5 no soreness and the temps went down after my high of 102.5 which was like 2 days after finding out I was positive. Rn I have no throat soreness and a slight fever. I feel I will be 100% in about 3-5 days.

By Michelle

Because of Covid 19 my disabled fiance and I are about to become homeless. We've never felt so low in our lives.

We live with my father who is also a disabled veteran. My fiance and I moved in with him because my fiance needs a slew of surgeries and my father needed some care too. My fiance had back surgery last year and is recovering from shoulder surgery that he had two months ago. He was scheduled to have knee surgery July 29th which was canceled because of catching Covid. After his knee surgery he was supposed to have his other shoulder surgery and a spinal surgery. He was hit by a semi truck years ago, and had been fighting with the VA for many years to have these surgeries, but apparently his injuries were not “bad enough” to warrant procedures until his body deteriorated enough. It's been a constant battle with the VA. So much so we had to hire an attorney to work on getting his disability increased and getting Social Security Disability. That fight is still ongoing. And if you know anything about VA disability, or even getting the care you need, it's very slow moving. He needs a lot of care in recovery, and lots of physical therapy. Which is why we made the decision to live with my father so he could recover and we could afford to live on just my income selling on Ebay. It gave me the flexibility to take care of them both. It's been exhausting, but worth the fight to get my fiance healed. He's been living with immense pain for way too long.

My father agreed that this would be the best thing for us since he couldn't have the surgeries any other way because we couldn't afford to keep our rental home on just my salary. So all's good. He gets two surgeries and is on track to have his third when I test positive for Covid. Because my father is immune compromised with severe COPD, emphysema, and other health problems, we had to quarantine at an efficiency for 14 days to keep him safe. My fiance was scheduled to have knee surgery on the 29th (the day I was to get off quarantine) but he tested positive for Covid (two days before surgery). We kinda knew it was going to happen, but I had read stories of people living together and sleeping in the same room where the other person didn't catch it, so I was trying to stay positive that maybe we would get lucky. We didn't. And so, we had to find another place to quarantine for another two weeks. Which means another two weeks without pay. To make matters worse, the water pump on our Jeep broke. Great. /s

We have three more days in quarantine. We are so ready to go back home. Then boom. My dad calls today and said we needed to talk. He said he's scared for his life, and scared he is going to catch Covid. I already put him at risk once. And he was lucky not to catch it. But next time he might. He's worried we are going to bring the virus home to him again, and I can absolutely understand that. He was super lucky not to catch it this time.

Even with all the precautions I took, I still caught it. I always wore a mask, and used so much hand sanitizer my skin should have peeled off. I haven't even seen my friends in over two and a half months. I stayed at least six feet away from people, and still caught the damn virus. Even still, I feel immensely guilty.

Almost everything we had was spent on staying in a hotel for a month, and fixing our vehicle. We have under $100 left to our name with two bills coming up, and now we have to move out with nowhere to go. My dad apologized over and over. I told him I'm not mad at him, I understand it's his life he is worried about, but I have no idea what we are going to do, or where we're going to go.

I live in SW Florida. If anyone knows of any resources that I can reach out to please let me know. We will be calling the VA first thing in the morning to see if they offer any help, but I won't hold my breath. I'll also be calling the Red Cross and 211. Those are the only resources I'm familiar with. In the event that we have to stay in a shelter, I'm going to beg my dad to take care of our dogs until we can find a place to live. I've been crying with just the thought of having to give up our dogs. They are like our children.

I'm so tired of this pandemic. I'm so tired of struggling.

By D

It started with just a sore throat and a very mild “sick feeling” I honestly didn't feel too bad but then 2 days into it I completely lost my sense of taste and smell which was extremely odd considering that all my other symptoms remained very mild. I tested positive for covid and isolated for 2 weeks at my home. I never felt too bad and by the time 2 weeks had elapsed I started tasting and smelling again. Going to the gym feels the same as usual but my breathing has definitely taken a hit. I don't feel like I can catch my breath during more intense exercise but I feel like that's also going away and getting better.

By Sarah May

Back in late January I developed a “respiratory infection”. My memory of the time is now a bit fuzzy. I'm not sure if it's because of the illness, because everything has been so disorienting since,or because strangely, I fell madly in love right after. Last January and February many people in the area I lived had been coming down with a “bad cold”, “flu”, etc. I live in a suburban/rural area and Covid was still a new idea thought to be somewhere else. I remember getting sick and thinking I would take a couple days off and feel good enough to go back to work in a couple days like I had when I got sick the previous year. But I felt so much worse this time.

I went to urgent care where they diagnosed me with “respiratory infection”, offered me antibiotics and sent me on my way. A week approached and I convinced myself I should go back to work. I guzzled Dayquil and it barely made a difference for more than an hour. I even wore a mask long before they were implemented because the coughing would not stop. I worked in a store and I had told my supervisors how ill I was but they didn't seem to believe me. They kindly condescended to me that I would feel better soon but I did not for a while. It would seem to subside then come back on strong again. I coughed and coughed until my stomach and lungs ached. I doubled over in pain, the cough still rising from my chest. That ache in my lung was one of the last things to leave.

Vertigo and fatigue set in that made it hard to shower or move from room to room. I'm in my 30s, live alone and come from a family without much sensitivity to others. I learned to “deal” and “push through” some of the most harrowing experiences of my life by myself. I also live in New England where there seems to be a fetishization of suffering silently. As I lay alone in my apartment, I distinctly remember trying to joke with friends, family, or the man who would become my boyfriend...“Might be dying guys.love you...I think my lung might have collapsed...Should I go to the hospital?.. When do I call an ambulance? Haha...ha.” Vaguely texting into the void, I worried quietly about not seeing any of them again. Getting better was gradual. A light cough and fatigue hung around for a while. Again, my memories from six months ago are a bit scrambled at this point.

I now think mine was one of the early cases. I am getting an antibody test. It was a month later when I was laid off from work and quarantine began.

In a side-note, my co-worker, an elderly woman, became ill not long after me. She was almost incapacitated . She is a beautiful person who had been kind and generous to me. She also had some type of spirituality that made her avoid doctors,medicines that weren't natural and believe that becoming ill was a part of some grander spiritual plan. She kept assuring everyone that she was alright and on-the-mend, but as of this writing she is still recovering. Six months later. I carry a lot of guilt that I might have been the one she caught it from. That I might have spread it further in those early days before we know what we do now. And wonder about how things might be different if we had the proper information in due time.

I can say most things I was doing before have gone or changed drastically. The relationship I mentioned has progressed through the bizarre filter of quarantine. I wonder if maybe I had been more open to it due to the fear and solitude I experienced during my illness. I have more money from unemployment but my depression and anxiety have become overwhelming. Routine and staying busy were my coping mechanisms. Any plans I had have been postponed or deviated...possibly for the better. But who can say at this point?