I just crossed the 4 month mark of being sick w’ #COVID19. I am young, & I was healthy. Dying is not the only thing to worry about. I still have a near-daily fever, loss of cognitive function, essential tremors, GI issues, severe headaches, heartrate of 150+, viral arthritis,
heart palpitations, muscle aches, a feeling like my body has forgotten to breathe. Over the past 124 days I’ve lost all feeling in my arms & hands, had extreme back/kidney/rib pain, phantom smells (like someone BBQing bad meat), tinnitus, difficulty understanding text/reading, difficulty following conversations, sensitivity to noise & light, nonstop bruising. Thinking can cause headaches now. I’m not alone in the cognitive issues; it’s as common a symptom as cough.
No one knows when #longcovid patients aren’t contagious; many are alone for months.
People w’ #longcovid weren’t able to get testing until late. There are people on my same timeline who are only now learning they had strokes & encephalitis & heart attacks. MRIs/CT scans were only accessible in the ER. Drs were solely looking at the lungs for way too long.
The symptoms are bizarre. There are people with brand new #allergies to the point of anaphylaxis; others whose allergies have disappeared. Post-menopausal women who are having spotting and periods again. Medications spontaneously stop working, need to be adjusted higher/lower.
It causes flareups of other viruses, past surgeries, other conditions. Old injuries are raw & feel new again. My left leg & foot, injured in a moped accident in 2017, feels crushed like it happened yesterday.
Intolerance to exercise, alcohol, caffeine, & stress are common.
Insomnia is common. The dreams are vivid & bizarre, often lucid dreams, often violent & nightmarish, many reports of dreaming about people who have passed away.
The symptoms wax & wane; you think you’re getting better, only to be hit again. New symptoms appear constantly.
The CDC is starting to acknowledge us & the #LongCovid numbers are high: 35% of people are not back to normal after the suggested ‘recovery’ period.
Given the US’s current cases of 4.2 million, that’s 1,470,000 long haulers in the US alone.
In patients aged 18-34 with no pre-existing conditions, that number is 20%. I was in that unlucky camp & you could be too. This life is a weird parallel one where almost everything in your old world feels alien & unreal; I don’t want it to happen to a single other person. I had been isolating for 11 days on the day of my first symptoms and I probably got it on a trip to the grocery store. There is almost nothing that is worth losing 4+ months of your life in this way. No BBQ, no tech event, no haircut.
This isn’t the flu where you can curl up with netflix and tea for a few weeks; this is an active, awful illness with neurological effects for most.
For now we’re holding out hope for #recognition, #research & #rehab. And we’re doing our own research: patientresearchcovid19.com
I want to add that people with myalgic encephalomyelitis (#pwme) have gone through this same thing without any of the attention #LongCovid is getting; we need to remember them & bring them along with whatever recognition & funding we receive. And IMPORTANTLY, like #ME…
…we are going to be in trouble if we start getting lumped into a singular diagnosis or the dismissive “chronic fatigue syndrome”; everyone’s #LongCovid struggles are different, not everyone has fatigue/exercise intolerance, advocacy for heterogeneous treatments is vital!