‘It’s the next worse thing to dying.’ Most doctors don’t believe us or don’t know how to help. Covid didn’t kill me. It took my life.’: Covid ‘Long Hauler’ urges ‘please be part of the solution’

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“Covid didn’t kill me. It took my life.

I am what is called a Covid-19 Long Hauler. What qualifies someone is debilitating Covid symptoms lingering longer than a month. December 15 will mark 6 months for me. I wasn’t sick enough to go to the hospital, but I’ve been too sick to live my life. I suffer multiple debilitating symptoms that have cost me a job I loved and left my 2-year-old son with a shell of a mom.

At the beginning of lockdown in March, I was more concerned for everyone in my household than myself. At the time, my husband was immunocompromised due to medication for an autoimmune disease he himself is battling. Our son and my elderly mom also live with us. I considered myself the healthiest and strongest family member.

Courtesy of Jessica Lovett

My husband and I were both infected in mid-June. My first symptom was digestive issues, followed by elevated temp, hot and cold flashes, crippling fatigue, astounding brain fog accompanied by confusion and hallucinations, tachycardia, joint and muscle pain, shortness of breath on exertion, panic attacks, blurred vision, new food allergies, vertigo, and more.

My current daily reality is this: imagine the moment after being whacked in the face with a tennis racket. I can’t see straight, my ears are ringing, I have a hard time finding words and answering questions, I forget what I’m doing while I’m doing it. I feel like I have brain damage or had a stroke. This is just the brain fog and confusion.

My body always aches as if I were in a bad car accident two days ago. My skin feels sunburnt. I’m not familiar with this body. It’s full of surprises. I have to take heart medication now because of severe chest pain and heart palpitations. Walking up the stairs feels like a marathon. Muscle fatigue envelops my body, my heart rate shoots up, and I can’t breathe. I suddenly can only eat foods low in histamine – imagine waking up one day and being allergic to food without warning. The way I think, communicate, and reason is different. My sense of self is lost.

Courtesy of Jessica Lovett

My husband was back to normal in 12 days. I have been waiting 6 months to be back to normal. My husband was quoted on the news saying, ‘What happened to my wife is the next worse thing from dying honestly. It has taken her life in so many ways.’

Courtesy of Jessica Lovett

There is yet no discovered rhyme or reason to who this virus chooses and why. Additionally, Covid tests are barely reliable. We both tested negative for the virus and positive for antibodies.

A negative test, unfortunately, works against Long Haulers when we’re trying to get medical help, so, on top of being maimed by a deadly virus, there’s no guidance. Most doctors either don’t believe us or don’t know how to help other than say, ‘Give it time.’ I guess we ‘wait and see’ if our micro-vascular system has been shredded? How do we find out if tests aren’t showing anything?

Just because my doctors can’t find anything doesn’t mean I’m fine. I’ve spent thousands of dollars for all of my tests to show up normal, despite my life-altering symptoms. Normal tests mean no treatment. In regards to my symptoms, one doctor has said to me, ‘I will not be able to treat you… it’s beyond my expertise.’ Another doctor has said, ‘You’re fine! The tests are showing everything is normal. You just need to stop being so anxious.’ I’m fit as a fiddle on paper, but can’t walk up the stairs or take a shower without getting lightheaded.

Courtesy of Jessica Lovett

When your life changes overnight and doctors can’t help you or find anything wrong, it’s traumatic. You grieve the old you. At what point do we let go of who we were and start accepting who we are now? I have yet to meet a Long Hauler who says this isn’t that bad. If you can call yourself a Long Hauler, you’ve been through hell.

The future is unknown with long Covid. It hasn’t been around long enough to collect data on the long-term effects. Is this permanent or temporary? Will my son ever know the ‘real’ me? I’ve had to accept this experience has changed me, regardless if I ever get back to ‘normal.’

Courtesy of Jessica Lovett

Prior to Covid, when I envisioned motherhood, I never saw myself sick. I didn’t see myself on the sidelines. I was a very healthy, happy, busy mom with no underlying conditions. I saw myself getting down on the ground and rolling around in the dirt with my son. I envisioned endless arts and crafts, long walks in nature, lots of one-on-one time, park dates, family adventures, hikes, camping, and tons of hands-on experiences. I pictured myself right in the middle of everything – coordinating, planning, arranging. Covid stole this identity from me. All of those visions switched off as though someone pulled the plug. How am I supposed to be the mom I pictured when I can’t even get out of bed? Am I going to fail my son? Will I be a living ghost? This has been my greatest fear.

Courtesy of Jessica Lovett

I’ve been challenged to look further within myself. What is left when everything is stripped away? At first, I felt hopeless. I felt like a pile of rotting flesh and bones. Then, I thought about my son, and the person I hope he becomes. I wish for him to have compassion, gratitude, to be kind to himself, animals, the earth, and others, to have a big heart, a loving demeanor, and to be gentle, yet strong and brave. I would want him to practice some kind of spirituality and believe in a power greater than himself, whether it be a relationship with my God or not.

Courtesy of Jessica Lovett

This gave me insight into what I could still be honing in myself. I have learned, regardless of the outcome, I can still be a good mom. Nothing stops a mom – not even a disability. Disabilities do not get in the way of providing for or loving our children. I learned I have no reason to doubt myself as a mom just because I’m unwell. The world has created a stigma that makes disabled and/or chronically ill people feel like they can’t be good mothers. This stigma needs to be broken.

Courtesy of Jessica Lovett

Although this virus has weakened me physically, this journey has healed my soul. My fortitude and determination have been strengthened. The road through worry and fear leads to faith and courage. I have a deeper appreciation for the little things and know what not to take for granted. I couldn’t have achieved this perspective without trust in God. I’m confident this experience has made me a better mom. Instead of being depressed because I lost my life, I’m full of gratitude because I didn’t die. These lessons will be as good as, if not better than, rolling around in the dirt.

Ironically, I found my best self through this journey by losing myself. The best me looks like a calm, gentle, and kind person. The best me acts with courage, empathy, resilience, gratitude, and resounding strength. The best me is emotionally mature. I’ve learned it isn’t only about strength for lifting heavy weights, it’s about strength for lifting up others, showing compassion, and practicing self-love. What makes me the best me aren’t the things that can be seen, but rather, those that can be felt.

Courtesy of Jessica Lovett

I don’t share my story for pity. When I first started documenting my story on Instagram, my intention was to keep my friends and family up to date on my recovery. Much to my surprise, other Long Haulers and Covid survivors started finding my account. I began receiving messages from people thanking me for being public about my experience. I realized the comfort I was bringing to people just by being honest and sharing the details of my long Covid journey. Now, I share with the intention to help people feel less alone and less scared. I hope my story spreads awareness and shows proof of how serious Covid is with real examples of how it has affected my life. I want to demonstrate the physical and mental challenges even a mild case can present. It will change your life.

Courtesy of Jessica Lovett

Here are some real messages I have received from other Long Haulers:

‘I’m crying my eyeballs out reading this. So grateful to not be alone in this crazy journey of life changed overnight.’

‘Thank you for your page and sharing your journey. It has helped me tremendously. When my symptoms started and I wasn’t getting help from doctors, I had to turn to Google articles. I started looking up people on social media from the articles and didn’t realize how many long haulers there are.’

‘I feel lost and this post made me cry. I thought I had lost my mind when everyone in my family thinks it’s in my head.’

‘I’m so glad I found your page, it makes me feel like I’m not alone and maybe I’m not crazy!!! Sending you lots of hugs. Thank you for being open and posting about your journey.’

‘Thank you so much for your account of Long Haul Covid. It’s people like you who make people like me feel sane!’

In addition to my public Instagram account of my long Covid journey, I started a Facebook support group for Long Haulers in and around the city of Austin, Texas, called ATX Covid Long Haulers. My intention for starting this group is to share resources, tips, and to help one another navigate the medical system. Why not go directly to a doctor who is informed about Long Covid and knows what a Long-Hauler is than spend energy we don’t have explaining it to a doctor who hasn’t heard about it? My hope is acknowledging doctors who have done their homework about current events will get other doctors to do the same.

There is still so much to be learned about Covid. The only current solutions to this pandemic are – wear a mask, stay home, wash your hands, and practice physical distancing. Please be a helper and do your part, even if it’s small. Please be part of the solution. Love others. Show compassion. Care. You never know whose life you might be sparing.”

Courtesy of Jessica Lovett

This story was submitted to Love What Matters by Jessica Lovett from Texas. You can follow her journey on Instagram. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories about Covid here:

‘My daughter called me from a party. ‘Mom, I’m violently throwing up. I swear I’m not drinking.’ She went from asymptomatic to waking up at 3:00 p.m. every day.’: Mom details daughter’s journey with COVID-19

‘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

‘TELL ME WHAT THIS MEANS!’ I sent a screenshot to my nurse friend on the frontlines. ‘You have COVID, Maggie. It means you’re positive.’: Woman candidly recounts journey with COVID-19

‘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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