Science and the Culture
Subscribe

My Journey (So Far) with Long COVID

Dr. Raven the Science Maven

Jan 28
34

In my last health update bulletin, I briefly mentioned Long COVID — in a nutshell, the form of COVID that has symptoms which last far beyond the positive testing phase. In this installment, simply because it’s transformed my life as I know it, Long COVID is going to be my focus.

Symptoms That Linger

When a virus works its way through your body, it can make multiple stops that can really mess you up! Perhaps most frustrating is that the symptoms can disappear for a few hours only to reappear in full force without warning. If you follow me on social media, you may have seen me discuss some of the following:

Loss of Appetite. When I first moved to California, I was delighted that I’d lost a few pounds because I became more active and was eating healthier foods. Since I caught COVID, I’ve lost an additional 20 pounds, and I feel anything but good about it. Subsisting on nutrient shakes, fruit smoothies, Pedialyte and water, the drop is not intentional, but a consequence of not being able to keep solid food down.

Viral Fatigue. One of the most terrifying aspects of this journey has been my absolute loss of energy. I’m someone who is used to constantly doing things, and to not have the ability physically to accomplish more than the bare minimum has been incredibly challenging. Up until very recently, I’ve had to decide between eating, showering or brushing my teeth/washing my face because I simply don’t have the strength to do it all in one day.

Tinnitus. For those who may not be familiar with it, tinnitus is a condition where you hear noises and interference in your ears. Since I got COVID, I’ve had a terrible case of this that is sometimes as loud as my Grandma’s TV used to be! I’m hoping that this symptom will also dissolve in time, but so far it seems like it’s here to stay.

Swollen Lymph Nodes. An indication that my body is still fighting the good fight, long after my tests came back negative, my lymph nodes were ballooning up to epic size proportions. Not a great look, but I appreciate my body having my back.

Rapid Heartbeat. I get dehydrated very quickly (hence the volume of water and Pedialyte I consume these days) and if I’m not careful about re-hydrating, my heartbeat accelerates to frightening speeds.

Insomnia/Night Sweats. I’ve tried everything from meditation and breathing exercises to Benadryl. Part of healing is getting good rest and without sleep, that’s nearly impossible!

Depression. The lack of energy, brain fog and uncertainty about when this will all finally come to an end have made me lose hope several times along the way. As a result, I’ve become extremely depressed (which is very counter to my personality) and cry multiple times per day. I don’t think there are enough people talking about the toll that COVID takes on mental health, so I wanted to be sure to mention that it’s been one of my greatest challenges in this whole journey. I have sought help and am taking anti-anxiety meds to manage it.

It must be noted that my symptoms, as miserable as they are, prove to be very minor in comparison to others with Long Covid. Reports show that many also suffer from life-threatening blood clots, heart irregularities, shortness of breath, vision loss, hearing loss, smell/taste loss, skin conditions, digestive issues and so much more.

According to Penn State College of Medicine researchers, over half of those diagnosed with COVID will experience long-haul symptoms lasting up to six months. ​​Typical timelines for recovery of long COVID can range anywhere from three weeks to six months, or in the most extreme cases, more than a year.

In addition, data from a study conducted by King’s indicates that women (in addition to those older or with a higher number of symptoms at the start) may be more susceptible to Long Covid than men. This article at The Lily explores that ratio further.

Adults aren’t the only ones who are able to get Long COVID—it can affect children too. In their cases, they may fall behind in school, lack the energy to participate in sports and other physical activities they previously enjoyed and suffer from anxiety and depression like their adult counterparts. Furthermore, the youngest children who may not be able to verbally express their symptoms may have challenges with recovery because their parents and doctors don’t know how to specifically treat them.

The main takeaway here is that there is no known cure for Long COVID. The only major treatment that is agreed upon to alleviate symptoms is rest, which is something that may not be feasible for everyone to attain depending on their role in life (parent/caretaker/breadwinner, etc.). Fiona Lowenstein, a healthy, active 26-year-old who contracted the virus in 2020, wrote about how she rested her way to recovery from Long COVID. As a result, she started the Body Politic COVID-19 Support Group for patients and caregivers. That community has grown to over 11,000.

Other communities that have stepped up to support Long COVID patients are those who suffer from ailments such as Chronic Fatigue Syndrome/Myalgic Encephalitis. Because these individuals have learned how to navigate life with limited energy and/or chronic pain, they are able to empathize on a deeper level and offer practical ways to endure ongoing symptoms.

This sense of community is wonderful, but from a systematic standpoint, our governments around the world need to step up and provide resources for Long COVID patients. Many suffer financial hardships because of lost work; others need childcare because they don’t have the energy to watch their kids in the midst of everything else they’re facing. Honestly, very few people have the luxury of focusing on rest the way our world workforce is constructed. By recognizing and acknowledging that COVID isn’t just “like the flu” for many people who survive it, and responding to the needs of those with long-haul symptoms, we will collectively heal quicker as a society.

It’s the Little Things

Through social posts, I’ve kept a log of some of my wins. I encourage those suffering as well to do the same as it’s a good way to reflect back and see that recovery does improve over time.

December 27: Stopped hacking up mucus

December 27: Fever lessened

December 30: I had enough strength to start crocheting

December 31: Regained some of my appetite

January 4: Sound and light sensitivity lessened; tinnitus reduced; had a wash over my whole body that felt good

January 7: Used my shower seat and ate solid food

January 10: Sang my favorite song standing up and had full breath control. Walked for five minutes straight for exercise. Also cleaned my bathroom sink!

January 13: Less fatigue and cough is gone

January 14: Drove myself to my Dr.’s appointment

Gratitude

I am so grateful and appreciative of my husband, my therapist and all of my healthcare professionals who do their best to treat my condition in the face of a lot of unknowns (especially Michael Nash), my dog and the online community that I’ve turned to so many times for support. From sharing coping mechanisms to recommendations for mobility aids and yarn for my crocheting projects, my experience on social media has been overwhelmingly positive.

As sad as I may get due to the grief of not being able to live my life to the fullest just yet, I do my best to keep gratitude at the forefront. I’m thankful I was vaccinated and boosted, for I fear the outcome could have been far worse. I’m thankful I have the resources to purchase items to help me through it. I’m thankful that I have small wins to celebrate as I regain my strength and adjust to a Stop/Rest/Pace lifestyle until I’m healed.

Truthfully, if anyone needed to slow down, it was me, so I’m thankful for this pause that’s helping me appreciate life even more.

Are you suffering from Long COVID or caring for someone who has it? Share your best ways to get through it in the comments section.

Photo credit:

Long-haul COVID: LJNovaScotia/Pixabay

Subscribe to Science and the Culture
By subscribing, you agree to share your email address with Dr. Raven the Science Maven to receive their original content, including promotions. Unsubscribe at any time. Meta will also use your information subject to the Bulletin Terms and Policies
34

More from Science and the Culture
See all

Let’s Raise the Next Generation of STEM Leaders Together

When you think of STEM, your mind may conjure up a science lab with bubbling Bunsen burners or a blackboard covered in complex mathematical equations, but really, STEM is everywhere! It’s in fashion, finance, art, real estate, food … honestly, there are roles in every industry that require and utilize STEM skills.
Apr 30

Why is female biology such a mystery?

When I was teaching a high school science course, I was conducting a lesson about the female reproductive system and asked my students to draw it. None of them drew it correctly! Even at the college level-- freshmen through seniors in my non-majors biology courses had no idea how to draw the female reproductive system.
Apr 24

Shining a Light on Post-Viral Illnesses

The global pandemic left a significant number of coronavirus survivors with Long COVID, which I wrote about recently. The condition is now beginning to get the attention it deserves, thanks to many vocal patients sharing their symptoms publicly on social media, in addition to sharing them with their doctors.
Apr 14
Comments
Log in with Facebook to comment

34 Comments

  • James Hamblin
    Writes THE BODY
    Thank you for sharing this, doc. So important for people to talk openly and let others experiencing similar symptoms know they're not alone.
    • 15w
  • Kat Conrad
    Tested positive January 15, 2021 and was left with many LC symptoms, the worst being fatigue, insomnia and headaches. The best thing you can do for yourself is to rest when your body needs it and find a physician that really listens to you so you can t…
    See more
    • 15w
    1 Reply
  • Carolyn Suddaby
    Many long haulers are developing Dysautonomia/POTS. Many of the symptoms you are describing are what POTS patients live with. They are chronic, and life changing. There are no effective treatments. POTS is usually triggered by a virus and it’s damages …
    See more
    • 15w
    1 Reply
  • Mandie Lyons
    You may want to look up POTS. It can be triggered by a bad viral infection and it can cause that excessive heart rate among a lot of your other symptoms. It may help you to up your salt intake along with your fluids.
    • 15w
    2 Replies
  • Paige Porter
    I’m crying right now!!!! As a fully vaccinated nurse who got COVID back in August, missed 4.5 months of work, and is still dealing with Long-Covid (I am experiencing all of the mentioned symptoms along with a few others), it is so nice to know I am not…
    See more
    • 15w
    8 Replies
  • Pam Mathews
    I had Covid & in hospital March 27- April 7, 2021. I have off balance issues, headaches; I do not drive because of this! I can’t finish a sentence at times, my memory is horrible. Tired . I am seeing neurologist and pulmonary doctor and also my f…
    See more
    • 15w
    • Edited
    1 Reply
  • Natalie Stern
    Thank you for being so honest! The night sweats are so horrid. And I also got restless legs syndrome. Today is a particularly bad day.
    • 15w
  • Mark Dallaire
    Ask your doctor about the new Covid therapeutic drug Zyesami. You can obtain the drug through the right to try law. Go to the NRX webpage and click on the right to try have your doctor fill out the paperwork and your done. This drug is a miracle that i…
    See more
    • 15w
  • Shannon Sykes
    Have you ever been diagnosed with Epstein Bar ? I’ve been having long haul symptoms since March of 2021😑. Turns out I have a reactivation if Epstein Bar that’s causing this. I guess over 95% of the population carries Epstein Bar and may not even k…
    See more
    • 15w
  • Howard Bachus
    Tested positive 3-19-2020 and I suffer with most of the symptoms haven’t had a good night sleep because of the tinnitus it has gotten so loud haven’t been able to run jump are anything physically exerting because of the shortness of breath I still hav…
    See more
    • 15w
View 6 more comments
Share quoteSelect how you’d like to share below
Share on Facebook
Share to Twitter
Send in Whatsapp
Share on Linkedin
Privacy  ·  Terms  ·  Cookies  ·  © Meta 2022
Discover fresh voices. Tune into new conversations. Browse all publications