Updated: Oct 11
A COVID-LONG-HAULER ... 78 DAYS AND COUNTING..
Anne Schneider, 44, Labor and Delivery Nurse (Phoenix, Arizona)
My timeline of events: (I believe that I contracted Covid-19 from a patient)
6/9 first day of symptoms - Had diarrhea approximately 4-5 times, otherwise felt fine not entirely unusual for me as when Covid-19 hit, we stopped the Keto diet due to the stores really only having comfort food left; the change in diet would cause stomach issues. (I never thought it was related to Covid, until days later)
6/11 Random fever discovered when I went to donate blood 100.0 then 100.4, felt fine, I passed two forehead screeners before an oral temperature read high.
6/12 Tested for Covid-19, due to the fever ; tested negative and still felt fine!
6/15 Started to feel allergy symptoms late afternoon: Headache, congestion, sneezing.
6/16 Little by little feeling worse, my anxiety was high.
6/17 Tested again, woke up feeling sick. Tight chest, bad headache, nasal congestion (took Sudafed without relief). Achy and joint pain. Decreased appetite. Noticed my respiratory rate increased, when trying to sleep on my side.
6/18 Woke up with my chest burning, headache a little better, congestion remained. Got results, POSITIVE COVID TEST. More diarrhea, loss of appetite, nausea. Mottled skin on my legs when I get up to use the bathroom, resolves when I get back to bed. I notified my primary care physician, but initially I was just treating symptoms at home.
6/19 OMG, the body aches have kicked in. It hurts to walk and hurts to wipe when I go to the bathroom. Headache is still here, congestion, nausea, no appetite. No fever. Slept OK.
6/20 Very congested. Slept awful last night. Sleeping on my tummy proved very difficult. But for a brief moment it allowed my head to drain, so I could breathe through my nose! So that was nice. It has currently gone back to completely clogged on the right again. My back is killing me. Still painful to walk. Activities: walking to the bathroom/brushing teeth/ washing face, all are exhausting and make me short of breath.
6/21 Day 13 Another difficult night sleeping. My temps have all been around 99.5 and today was 98.9. Less joint pain so far than yesterday but I haven’t been up long. My bum ankle was particularly painful, enough to wake me several times and had me thinking I was post op another ankle surgery. But I’m hopeful. My throat is very red and choking on drainage is a new thing. Maybe my head will finally drain. My stomach is a little crampy and I don’t feel like eating yet. Congestion remains. Shorter of breath this morning, doing my morning routine of potty/teeth/face. 2 out of 3 isn’t bad!
6/22 I was up from 2:30 to 5:00 with awful abdominal pain. I had a moment of hunger around 11:00 pm and probably ate more than I should, so I paid for it. Head is pounding, pulse ox is good and temp is 99.4. Lower back pain and flank pain remain. Some weird upper L quadrant pain, but not awful. Congestion persists.
6/23 Yesterday showed promise, but today has squashed that. I’m nauseated, more diarrhea, headache, short of breath, congested, body aches. Temp 99.1, heart-rate all over the place depending on activity level. Oxygen levels were 88 when I first woke up but got up to 96. Left lower lung sounds hard to hear. Right sounds good. Shocked they are clear. Cough more persistent today. Hot flashes, but no fever. Called my primary care doctor who prescribed me a z -pack and a 10 day course of 60 mg of prednisone, to help with the symptoms.
6/24 Just woke up for the second time. I was up from 7:30 to 9:30 and was so tired I went back to bed. Had a horrible headache, congestion, fatigue, aches. O2 was 96, when I woke so that was good, temp 99.5. I had a scary moment last night when I felt really off. Hot flashes, anxiety, very short of breath, and I felt like my legs were two different colors. It was the first time I felt like I may need to go to the ER. My left lower lung bases were very hard for me to hear air movement, so I’m hoping the antibiotics and steroids were started in time to prevent a bad pneumonia. I was shocked to hear how clear my lungs were otherwise!
6/25 Day 17 Just waking up....I’m slowly turning into a vampire. I slept better and it was easier to fall asleep last night. I woke up early and took my medicine and went back to sleep. Woke up with another nasty headache and a burning sensation in my nose and throat. Respiratory rate felt fast when I woke up and my O2 was 90-92, temp 98.8, heart-rate 50; my athletic norm (sarcasm). More diarrhea. Headache is terrible, progressively got worse throughout the day.
6/26 Horrible night sleeping. Probably fell asleep around 4:00 a.m.. Headache improved but never gone. Burning in my nose and face along the left side. Congestion remains, Headache, slight cough. Body aches aren’t as bad. 02 was low when I woke up but came up quickly with some deep breathing. Heart-rate 48, Oxygen levels, 86% but up to 97% quickly temp 98.3!
6/27 Day 19 It’s like every day it’s some new thing. I’m currently struggling with a bad headache and a burning sensation through the left side of my face. I think my lungs are improving because I hit a new high score on my IS! But my O2 level still drops, still coughing, still diarrhea, still hardly any appetite. Body aches are better but still present. Temp still runs around 99.5, fatigue, congestion, headache, stomachache, diarrhea, generalized pain, sneezing, cough, short of breath. O2 level was 95 when I woke up and finally checked, but I tried my hardest to go back to sleep, so I was up for a bit.
Had a mental breakdown last night over not being able to sleep and being locked away. I went out to the driveway, sat down and cried. The fresh air felt amazing and my husband of 13 years, Rob, stood what felt like 1 million miles away, but we chatted outside with masks on, and I felt better. I still wasn’t able to sleep but I got those emotions out.
6/28 Day 20 Worst night's sleep. Up until 4:00 am wide awake. Woke up congested, tired, increase in coughing today, chest feels tight and burns some. Lower back pain. Headache improved and I ate some today. Lower numbers on incentive spirometer (IS). Stomach is OK. O2 levels are 95-98 temp 99.1, goal is drinking and incentive spirometer, today. Getting some mucus out of my nose. Some tingles in hands and feet. Will try and walk around some. Don’t like it. Diarrhea is back. Lots of post nasal drip.
6/29 Day 21 Just waking up, slept better but not great. (I have started to not fall asleep until 6 a.m. and sometimes sleep until 2 p.m.) I kept waking up hearing things. Like my daughter crying, but she wasn't crying. I think I was delirious. People knocking on my door and smelling smoke. Tried to eat something but appetite was gone. Very congested and my head hurts. Had sharp abdominal pain last night too. Thankfully that resolved. O2 was 98, temp 99.0. More coughing today. Skin is peeling on my arm.
6/30 Having a lot more coughing and chest tightness today. Last night I felt like my heartbeat was really irregular and with the tight chest, it was hard to sleep. I am able to keep O2 above 90, except when I sleep. So much coughing today.
7/1 It was another difficult night sleeping. Slept prone and felt like fluid was pouring out of my lungs and I was choking. That sensation is gone thankfully! Lots of congestion, headache and pain so far. Heard more helicopters last night....hope they were real. My bones hurt today; past just muscle pain, to feeling like my skeleton hurts. Temp is only 99.0 and O2 is 94-95 late evening; I keep smelling smoke. Rob assures me it’s not there. Coughing isn’t gone but better with the albuterol. O2 is 94-95, but comes up with albuterol and deep breathing.
7/2 Day 24 -Woke up very sweaty but no fever, so that’s good. However, I didn’t go to bed until 9:00 a.m.; I cough the instant I lay down. I used my inhaler before attempting sleep again at 9:00 a.m., and still coughed, but was able to sleep. Thank goodness. Woke with a bad headache and some joint pain. Before going to sleep I actually felt pretty good. I may be turning a corner finally. I still definitely need the albuterol every 4 hours, if not more frequently, but it does help.
7/3 Took Benadryl last night after trying for over an hour to sleep. Then I panicked and made Rob check on me while I slept. But all was good. O2 was fine when he checked me, low when I woke up, but came right up. Normal temperature but congestion remains and I’m tired, back hurts but otherwise so far OK. Spontaneous bloody nose. Didn’t last long before it clotted off. Makes me wonder what my clotting numbers are. My temp was 99.6, which I know isn’t technically a fever, but it feels like it to me. My body hurts. Frequent BM ribbon like stool, dark green color. Lymph nodes are tender along jaw line and while putting deodorant on. Extremely tired today. Abdominal pain and back pain all day.
7/4 I’m very stuffy, body hurts, lots of drainage, plugged ears, headache 99.2, O2 97%. Ate some banana bread and my stomach is a little upset from it now. I went outside for a little bit because Rob and the kids were swimming. My heart rate goes to 120 just walking back to my room. More diarrhea.
7/5 Day 27 Rough night sleeping, due to pain, despite talking Benadryl and an Oxycodone recommended by PCP. Oxycodone took edge off of pain, but it still woke me up multiple times. Lungs feeling better. Only used inhaler once yesterday that I remember. Head remains congested, back pain this morning. Temp was normal when I woke up. More diarrhea. Started probiotics. Nausea. Temp 99+ ,despite 1 gram of Tylenol. Pain persists. Dizzy and weak.
7/6 Horrible night sleep again. Yesterday was rough. Still having stomach pain, headaches, nausea, fever and pain. Temp 100.2, joint pain, congestion, tight chest but not awful; albuterol helps. I feel like I’m radiating heat. Weak and tired. Eyes burning- some drainage.
7/7 Went to the ER today to be evaluated. A COVID doctor friend thought it was best since this has been going on so long. They did all kinds of stuff CT, EKG, X-ray and labs. Was glad to hear I had no pulmonary embolism or other infection, so that made me feel better. But, no real information either. Eyes burning and draining.
7/8 Body aches, stomach pain, temp 99.8 ,O2 96, trouble sleeping, felt weird vibration sensation while trying to sleep. Some weird tingles too and trouble finding words and spelling things when texting.
7/9 Day 31 Cough is back, headache, congestion, drainage, temp 99.1 ,O2 ,96. I’ve noticed over the last few days pain in groin, armpits, along my jawline; I don’t feel swollen lymph nodes, but the pain is there. Temp 99.9 mid-day.
7/10 Day 32 Woke up very congested. Stomach and back pain. Felt off and checked O2, it was 90 and then dropped to 89, and then it slowly came up again. Was 95-96% most times I spot checked it throughout the day. I can hear air moving in my left lower lung again. Overall pain was awful today. Took Oxycodone for some relief. Couldn’t get to sleep until 5:00 a.m. Heard more helicopters that were not there. Twitching in my lower left lip and chin.
7/11 Day 33 Woke up to the smell of bacon and it was actually real! No appetite yet. Very congested, temperature, 98.6!!! O2, 97%, headache, chest pain, dizzy, SOB. Took a shower, as I skipped it yesterday. Heart-rate pre-shower 58, post shower 143. O2, 92%. It’s physically exhausting to move. I feel good after the shower, but noticed a few tiny red spots on me (chest, arm, leg) a couple tiny blisters on my chest. More twitching in my lip/chin.
7/12 Day 34 slightly congested improving while awake, normal temp and O2, 97%, some mild back and neck pain. Feel kinda off today. Getting weird tingles. Some little dips in O2 and a little short of breath. Walked around my room to get circulation going. Temperature is 99.3 and now 99.5
7/13 Day 35 I guess this day didn’t happen. Total blur. I know I went to bed at 9:30 p.m. That was early for me
7/14 Day 36 I’m having a mentally rough day. I’m physically and mentally exhausted. I’m tired of hurting and being alone. My temp is going up, so I’m back to day zero and it’s so hard. I need three days of normal temps and I can’t even get one. It’s so hard to hear everyone recover and get back to life. Everyone I know has gotten better. I was sick first and everyone has gotten their lives back. I fought so hard getting back to the floor following my ankle surgery, and now I’m made to fight again. It’s so hard. Everything hurts- back, neck, arms and especially left hand today. O2 is 94-97, I feel SOB, even with normal O2 levels. My arms feel so weak as do my legs; sometimes it feels like they can’t carry me. Woke up congested with a headache. Crying has shockingly cleared my nose and head is mild. Waves of nausea hit and nothing sounds good to eat. I’m down to 168 from 174 pounds, but my body looks pale and weak. I cry at the drop of a hat. Temp normal when I woke and hit 99.1 now 99.5 at 4:45 pm.
7/15 Day 37 Still feel like garbage, I currently have a pounding headache and didn’t get to sleep until after the sun was rising. Took pain medicine twice and melatonin, and was still so uncomfortable I couldn’t sleep. Temp normal but is slowly rising. O2 95-97, temp 99.3 at 2:45 pm. Head congestion and ear pain. Sore throat when I woke up. Head still pounding. Chest pain and heaviness. Heartbeat feels irregular and O2 drops to 89, but gets better with deep breathing. It feels awful to have these episodes.
7/16 Day 38 My sense of smell is coming back. I smelled Rob cooking this morning but wasn’t able to place the smell. But was happy to know it was there! Headache has resolved to very minimal, so today is already a better day. Heart-rate up to 135, taking the sheets off the bed, but a clean set is needed! SOB still present with some tightness, but the pain from last night seems to have resolved. Two normal temps so far today. Joint pain present and congestion with some waves of nausea. 99.2 at 4:45 p.m. I just took a shower, heart-rate is back up to 135; exhausted and short of breath. 6:40 p.m., temp is 99.5, I feel very hot, joints hurt. 11:00 p.m., laying in my bed, not completely flat, I became SOB and felt weird, oxygen was 84 and super slow to come up. But it did. I’m so over this! Used albuterol, and incentive spirometer; sitting up now, so it's staying at 96, coughing. More pain in joints starting around 6:00 p.m.
7/17 Day 39 Re-test for COVID: temp 98, O2, 97%, nausea, headache, SOB. Seems if I’m at all reclined my O2 drops. Was just 91%. Have had dropping O2 throughout the day. 88 at the lowest. Using albuterol ,every 2 hours and added Symbicort this evening. Temp 99.2 at highest. Coughing more today and feel certain something is happening with lungs again. Nasal congestion and chest tightness and some pain throughout the day and evening.
7/18 DAY 40!!! got some decent sleep, once I was able to fall asleep. Woke up congested and with a mild headache. Body aches and weakness. I check myself for signs of a stroke daily. The weakness and weird tingles worry me. My temp and O2 was normal when I woke, but on a recheck it was 88%, but came up with little effort. I’m back at the incentive spirometer, hourly and using my inhalers. Joint and back pain is unrelenting.
I have more journal entries, beyond Day 40, but I did eventually move to an excel spreadsheet because the journal became somewhat depressing to me. The spreadsheet contains more days of similar, and excruciating symptoms; I will leave the next 30 plus days to your imagination, but I can tell you that being infected with COVID-19 can be devastating, and change your life, in a matter of a couple of days to weeks. I suggest taking this virus very seriously.
True Stories of Covid-19 Q&A:
Did you lose your sense of taste and smell? Yes
How long were you sick? I’m still recovering. Awaiting a sleep study to evaluate my need for oxygen at night and an ECHO because of my chest pain and pressure along with tachycardia.
Did you quarantine or do anything special to keep other occupants of the house or other family members from getting it? Yes, we were very strict with quarantining because my husband is high risk. I didn’t reintegrate with my family until probably 8/1
If you are still sick, tell us how long you have been ill and if you have been unable to work or if it has affected your life in a dramatic way. My onset of symptoms was 6/9 and I’m still managing SEVERAL symptoms of the aftermath of this disease at the writing of this story. August 25th, is DAY 78!!. I have been unable to return to work and the worry if I’ll even have a job to return to, is very real. I’ve been out over 12 weeks.
While I’m able to make my own food, my ability to do much more than that is very small. I can’t play with my three kids, clean my house or work. Mentally it’s a roller coaster of emotions. Some days I’m happy and upbeat. Others I’m depressed or angry. I’m very easily irritated and frustrated. I don’t tolerate noise well and it makes me grumpier! I can’t focus and my memory, short and long is altered. For example, I went to get information about roadside assistance out of the glove box of our car. I ended up cleaning the glove-box. By the time I got to the car I had forgotten my task I originally went to do! I have trouble finding and spelling words. It’s very hard when your mind doesn’t work and you are acutely aware of it.
What was your worst symptom? Not being able to breathe is an awful feeling. But knowing at any moment I could throw a clot and have a stroke was terrifying. Having my hair fall out is also a horrible side effect of the Coronavirus. It depends on what your definition of "worst" is; this virus comes with a number of nasty, wretched and odd symptoms.
Advice for those who have not yet gotten COVID-19? Stay home, mask up and wash your hands. It’s as simple as that.
Happier, healthier days, before I contracted the Coronavirus
My steroid "moon-face", after a couple bouts of steroids, to help me feel a bit more alive.
A fabulous side-effect of the COVID-19, hair loss... coming out in clumps!
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