‘I’m not scared of getting the virus. I probably won’t die,’ they say. I survived, and now I’m battling post-viral syndrome.’: Woman diagnosed with Myalgic Encephalomyelitis after COVID-19 recovery

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“Imagine feeling like you have a HANGOVER or the flu for the REST. OF. YOUR. LIFE.

If you get Covid-19 and recover, you might permanently have a residual ‘post-viral syndrome,’ or Myalgic Encephalomyelitis. It’s estimated that between 10% and 29% of survivors will. So, just because you’re young and healthy and will not be the approximately 1% to die, it doesn’t mean you’re going to get well.

Imagine this:

You wake up with a headache. Your joints ache and it hurts to move. You feel like the Tin Man from The Wizard of Oz when he needs his oil. Your brain feels foggy. You try to remember what you’re supposed to do today, but your brains are mush. You feel flushed and clammy and a little nauseous. When you walk to the kitchen for your coffee, the world tips and swims just a little, as if it’s just not stable around you, and you have to reach out for the wall to steady yourself.

Once you are up and moving and drink your cuppa, maybe you start to feel a little better, or maybe a migraine sets in. Lights and sounds and smells – everything is just too much! Just getting dressed or taking a shower might be too strenuous and send you back to bed.

Sounds awful, huh? The unfortunate part is that it’s NOT a hangover. There was no fun last night, no choice in the matter, and it won’t go away after a good sleep. It’s what it is like to live with a post-viral syndrome, as many survivors of Covid-19 are finding out.

It’s exertion intolerance too, so imagine never being able to work out again. How fit you are now is likely the best you will ever get, and your condition will likely decrease significantly. Going up the stairs will leave you breathless, heart racing.

Alcohol will send you into a crash, making you sicker than you can imagine, and so will staying up late. Dancing will cause your heart to beat irregularly and your temperature to spike uncomfortably. Your schedule will suddenly age you by decades.

I’ve heard from young people that they’re not afraid of the coronavirus because if they get it, they won’t die since they’re young and healthy. That is likely true. Maybe the possibility of spreading the virus to others doesn’t worry you, maybe this all seems unreal, but THIS is what you haven’t heard of about Covid-19. If you get sick, you might become non-contagious, but you may never get well.

I contracted this condition in December, likely from a different virus, before I had ever heard of the condition. There are several viruses that can result in a post-virus syndrome like eventually Myalgic Encephalomyelitis, one of which is Covid-19. ME is a separate condition that is a result of the virus, and often it is lifelong.

I was 36, healthy, had no idea I was about to lose so much. The description above is a normal day for me. On a good day, I can walk a 1.3 mile loop around my neighborhood, as long as I lay down as soon as I get home; that will be the extent of my activity of the day. Even though I just finished my master’s degree (in Public Health, ironically) right before getting sick, I’m not sure if I will ever be able to work again, which devastates me.

Courtesy of Kristi Strelow

I have 4 sons who have to be quiet every afternoon for mommy to nap, or else I cannot be around them. They know I can’t go on hikes with them anymore and that sometimes I have to abruptly end family outings because I feel too ill. My husband has to pick up the slack where I have had to let go because of this illness. It’s not fair to any of them!

Courtesy of Kristi Strelow
Courtesy of Kristi Strelow

Before I got sick, my regularly active and outdoorsy family spent a great deal of time boating, camping, and hiking. Now, I stay home from most excursions because I know I will only slow my family down.

Courtesy of Kristi Strelow

I used to pride myself on being a hardworking, independent go-getter. It’s been a shock to have to let things go, settle for less. I feel like I’ve lost so much of myself.

If you suddenly got sick, what would you miss out on?

If we can hold off the coronavirus from permeating our communities longer, we will get closer to a vaccine, and we might avoid cases like mine. There is still so much unknown about this virus. Acting casually, such as sharing drinks or vapes (as is happening at the bars), is just not smart. Trust me, you don’t want this.”

Courtesy of Kristi Strelow

This story was submitted to Love What Matters by Kristi Strelow. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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