My 1 year Long COVID-versary

1 year with Long COVID. Reflecting on the resilience of the human body and the test of endurance on my mental health.

Image taken from one of my trips to Banff National Park on a hike high up in the mountains. Dreaming of trips like this again.

I’ll never forget the first appointment I scheduled with my primary care doctor since my COVID infection in June 2024. It was almost exactly a month to the day from the first day of my symptoms and I will never forget sitting in her exam room hysterically bawling my eyes out. Crying because I was confused, scared and more ill than I’ve ever been in my entire life. I barely made it up to her office, so out of breath I felt as if my lungs were failing. So tired it felt like every cell in my body was dying. I don’t recount these symptoms for those of you reading this that have experienced Long COVID or a similar chronic illness, it is for those of you who may be reading this that are fortunate enough to have no idea what I’m talking about. Even then, there is no way for you to even begin to imagine the feeling of your body failing you. It is so terrifying. I’ll often reflect on that day and visualize my current self sitting in the chair next to that past version of myself. Holding her hand, embracing her in a hug, and giving her the assurance that we will be okay. But wow, she has no idea what she is about to endure.

In that moment, since I was only 30 days post infection. There was no way to tell if this was the mystery post viral infection syndrome the world was talking about, Long COVID. Criteria is that you must be experiencing these COVID like symptoms for more than 3 months post your initial infection. At this point, it was a mystery and a waiting game. But mentally, I couldn’t even comprehend being sick for another 2 entire months like this. That just felt so impossible, I truly couldn’t even comprehend what that meant or even let myself go there in imagining what that would mean if that were to be the outcome of what I was experiencing. Anyone with LC knows how these appointments go and just about all the subsequent ones that are to follow. The doctor has no idea what is wrong and sends you a referral to another specialist and the cycle continues. I wanted to scream when my doctor suggested I start anxiety medication as the only solution because I was so hysterical. But I couldn’t, even crying took too much energy. I felt trapped.

A few years prior, I had lost my younger brother suddenly and tragically so I know what hysterical is. This was not that, or maybe it was but it was definitely different. I had slowly crawled out of that dark hole so why did this time feel so impossible? What I was feeling was real and I was scared. I just wanted some answers. Less than a month prior, I was the fittest I had ever been, hiking multiple times a week and incorporating some other form of cardio a few more times a week. I had built up muscle I never had before from hiking, I was mentally sharp, traveling constantly, leading my specialty at my company, socially active as most early 30 something year olds without kids are, the list goes on. I was a high achiever who thought fast, moved fast and lived fast and was now trapped in a sick body that couldn’t even make it to the bathroom to shower or brush her teeth.

So I scoffed at the idea of taking anxiety medication. What I wanted was a root cause solution, not a bandaid to hold me over. What I have learned is that sometimes we do need help from medications to act as a bridge to get us over to the other side of our recovery. These don’t have to be permanent solutions, but temporary aids. I am learning. So from there, my journey to answers began and if you are also early in your journey with LC, I don’t say this to scare you, but I am still on my journey to finding answers and methods that work for me. I am still recovering, but what I have learned is that recovery is possible for me and for you too. There are so many creators and writers sharing their journey of recovery progress or even full recovery stories. Find those people, learn from them and ride their stories of hope. I highly suggest following Amy — The Tonic for all Long Covid content. Her weekly posts offer a wealth of knowledge of finding and happenings in the world of Long COVID and have helped reduce my mental load of feeling like I had to do all of the research myself finding the latest news related to LC.

Since that day in July in my doctors office, I have seen 9 specialty doctors, had 60+ doctors appointments, 5 hospitalizations, thousands of hours in bed with the curtains drawn, eye mask on, just sitting in darkness and silence, so many blood draws that my best vein now has scar tissue (tragic if you are a hard stick like I am), thousands of dollars spent on medical bills, transportation, medications and therapies (if I had to guess it would easily be over $10,000 but I’m too scared to add up the real total), 1 full month off of work on short term disability, a false diagnosis of valley fever, and the list goes on. All this and still no definitive answer or solution on how to heal my body to gain full recovery. But I have learned a lot and I will share that later in this post because I do think it is so important to celebrate the wins, albeit small wins. Again, not to dishearten anyone on this journey, but I think trying to quantify this disease shows the gravity of the situation those of us with this chronic illness are in. My identity has been stripped, erased, gone. Everything I loved about myself, my personality, my creativeness, my career, my friendships and relationships, the way I loved those in my life, all truly disappeared. And for the majority of this last year, I was too sick to even grieve this. It’s only when I have “good” moments physically that I am able to even begin to deal with the mental toll this chronic illness has taken.

Giving myself just a moment…or 2, to grieve

I also think about what I have yet to lose out on. My career is budding and I so badly want to take the next step in my role. I have a great opportunity at hand to take a major move forward, yet I know that my chronic illness is limiting me from taking on any more responsibility at the moment. Will this opportunity still be available for me when I’m better? Or will I simply fall behind? This pains the over achiever in me but I recognize I am so lucky to be even able to return to work as so many others with this chronic illness are still not able to work. But I am learning and growing. Learning to validate my feelings in the moment so that I can let these feelings pass and be kinder to myself knowing that healing is my top priority right now. I shouldn’t feel bad about putting my health first. My husband and I also want to start a family and that too is put on hold. I have learned that letting my mind spiral down the path of “what ifs” that send me into a fear mongered state, only worsen the situation I am in. But I also want to give voice to the valid feelings I have in the fear of not knowing when I will be healthy enough again to pursue my dreams. Will it be another 5 years? Will it be too late to even have kids by that time? I am fully aware that my biological clock is tick, tick, ticking. As much as I validate these feelings, I have learned to focus on the now and not focus on a set goal post of what I have considered as “recovered”. So as these feelings of “lost time” settle in, I acknowledge them, let them pass over me, but then I let them go and get back to celebrating the progress I can make today. The best metaphor I read from a doctor is that we also have to “metabolize” our emotions. If we do not address them, they get stored in our body, build up, and can boil over if not addressed, making our chronic illness even worse. So we are metabolizing and moving on.

Even just recounting all of that, I had to take a step away from my computer. My body had tensed up; I was clenching my jaw, my heart rate elevated, I was sweating, my shoulders tight and hunched and I could feel the tears welling up behind my eyes. This isn’t just real and raw, it is trauma. So I encourage everyone reading this to put your phone down or close your laptop for just 3 minutes and take some deep belly breaths, listen to a meditation, or just sit in silence and focus on your breath as you work from your head down to your toes, unclenching each body part as you go.

These last 365 days, 12 entire months, have been harder than anything I have ever endured in my entire life. It has tested me physically, mentally, emotionally, spiritually, and if there was a word for a 4th or 5th dimension, I would list that here too. The physical pain has been almost constant this entire time and that alone is something I don’t think our bodies are meant to handle. If you want to read more about what specific symptoms I have been dealing with and a more in depth reflection of my journey, you can check out this post I wrote here. But spoiler alert, it has been over 30 excruciatingly, relentless symptoms.

What I am most resentful about this chronic illness is how it has shifted my outlook on life. This chronic illness has made me cautious, scared, angry, sad and probably about a million other words with negative connotations. It has taken away so much from me but I am still in here. Still fighting. And because of that, I do want to reflect on what I am grateful for. One of the things I have learned about in this journey is the importance of neuroplasticity in our healing. We are never too sick or too old to re-train our brains to think differently and address situation in a more healthy way. So even though LC has wore me down, I am trying to find the light in each day through the following things.

Resilience, learnings and hope

First, I feel so lucky to have a partner by my side through all of this. Someone who not only loves me unconditionally, but someone who has also put their life on complete hold to be here with me through every meltdown, drive me to every doctors appointment since I have lost the strength to drive, help me up every flight of stairs, bring me ice packs throughout the night, offer me moments of light and laughter when things get tough and overall just hold life down for us while I am completely incapable of contributing anything to this relationship (or so it feels that way). I grieve his losses too. When you get married, you vow to be there for each other in sickness and health. Of course you hope that you never have to experience the “in sickness” piece and if you do, you probably only think of the brief bouts of the flu or common cold. Nothing like a long term chronic illness. My husband has been more that a rock or crutch, he has been my lifeline. I hope everyone has someone like this in their life. Even if it is not a romantic partner, just someone who gets you, trusts you and supports you through the brightest and darkest of days equally.

I am also grateful that I have a much stronger understanding and connection to my body now. I have learned to listen to the small signals my body gives me, alerting me that something isn’t right. It is true that our body whispers before it yells and listening to these slight indicators and acting on them before they turn into catastrophic consequences is a skill I am so keenly aware of and grateful I now notice. I do wonder how many whispers I have ignored over the course of my entire life. The opportunity to feed and maintain our bodies is truly a gift and one that I will never take for granted ever again. Our bodies are meant to heal, and I am working on doing everything I can do to support those functions of my body. Eating healthy, whole foods, maintaining good sleep hygiene, reducing stress, practicing mindfullness, and moving my body for what feels right are all things I have learned to fine tune and habits I plan to adopt for the rest of my life.

Through this journey, I have explored many holistic remedies that I think are applicable to anyone and any body, not just ones going through a sever chronic illness. If you are curious about some of those remedies like the benefits of lymphatic drainage massages, red light therapy, breath work and more, you can check out this post I wrote here.

I was also lucky enough to be accepted to and attend an out of state Post Covid Care Clinic Program that was a full week of onsite doctors appointments and therapy sessions that was the real beginning of the foundation I now have that includes a set of tools that I think will be instrumental in my healing. I outlined that entire experience in this post where I even detail the full physical therapy plan I was given that has helped me go from bed bound to moving again.

When I thought about writing about my Long COVID-versary, even just 2 months ago as I was making great progress, I truly thought this post would either be a recovery post or one that was filled with all positive updates. And although I have learned some great therapies and strategies that have helped me a lot and helped me experience a few months of really great progress, I am currently writing this coming off of a very tough month physically and more specifically, coming out a a pretty terrible 10 day flare up. This flare up has been the longest I have had yet on my journey with LC outside of my month long flare up where I had to go on short term disability, and one that reintroduced some symptoms that I haven’t had in a very long time. This has been incredibly frustrating but I do think I now have the tools to cope with flare ups like this. Just understanding the mechanisms of how and why our bodies react has been tremendously helpful for me. I now know how to respond, rest and recover and I truly have more hope in my recovery now more than ever.

So what’s next?

This week I am wrapping up my 6 month Post COVID Care Clinic journey with the Mayo Clinic. My biggest takeaways was the access to a team of doctors who are actually very close to and are curious about LC. Just being able to talk to doctors who understand this disease was monumental for me. I also believe the physical therapy plan I was given and have been able to implement over the last few months is what has got me to a point of safely moving my body again. I love that it is adaptive and I was able to use if from a place of being completely bed bound and plan to use it through the duration of my entire recovery.

I was accepted into the RECOVER — Energize clinical trial which focuses on pacing strategies to help with PEM (post exertional malaise). I saw a virtual panel of doctors recently talking about LC and one doctor said that PEM should actually be PEA (post exertional agony) because “malaise” doesn’t even begin to describe what our body endures during a flare up. Pacing has been crucial in my recovery journey. Between pacing and tracking my symptoms, I have been able to recognize patterns and even predict what has been causing my flare ups. This has helped me be able to then avoid certain triggers and identify what my “baseline” is. Nicole eloquently writes about finding your baseline among other helpful strategies for recovery in this post here on her blog My Long Recovery .

I plan to work on continuing my pacing journey and learning how to move safely. I do feel like moving my body is a very important part of recovery. With this latest flare up, I was able to look back at my symptom tracker and see exactly what caused this flare up and I will use this information to better pace in the future. The week before this flare up, I had increased my PT plan to incorporate resistance bands for more effort and increased my walking time from 12 to 15 minutes. These may seem like small changes, but for a body recovering, they can have huge impacts. I’m not saying this to deter you from trying to move to that next level, it is actually quite the opposite. We often must learn our threshold through this trial and error pattern, as unfortunate as that may be.

As for medication, I was pretty adamant on not starting any pharmaceuticals unless absolutely necessary. This was a personal decision for many reasons, one being that I am highly sensitive to medications. For example, I had a very adverse reaction to the methylprednisolone for when I was misdiagnosed with Valley Fever so that scared me from trying any other medications for quite a while. With that being said, I have since started low does naltrexone(LDN) and nicotine patches. In short, LDN is thought to help with fatigue, pain and brain fog through helping your body naturally produce more opioids. Here is a great post about the mechanics of LDN. Similarly, “Researchers like Dr. Marco Leitzke hypothesize that nicotine may help by competing with viral interference at these receptors, thereby allowing the nervous and immune systems to regain a more balanced function. Preliminary findings indicate that low-dose nicotine patches may alleviate symptoms related to autonomic instability, such as fatigue and cognitive issues, in patients with long COVID.” So far, I have not had any adverse reactions to either but have also not seen any improvements so I plan to just continue using both and will give an update when necessary.

Overall, I am tired from dealing with a chronic illness that has wreaked havoc on my body for almost a year now. I am also sad at times for the severe FOMO like no other as I watch the world pass by without me. I am sad that I can no longer enjoy music or many other activities as my sensitivity to light and sound severely limit what I can do right now. But I am also hopeful about recovery. Just the other day, I noticed myself enjoying the warm breeze as I sat outside listening to the birds. I haven’t felt enjoyment in anything in almost a year so this to me is proof that I am healing. I read from another writer(will tag if I can find her post), that professional athletes dedicate and put just as much emphasis on their recovery strategies than they put on their high intensity sport. Professional athletes know that recovery is key to their performance, and we should also be adopting that mentality and strategy in recovering from chronic illness, rather than looking at recovery as an outlier. With that, I wish I had a better update for myself and for you, I wish I was back to jet-setting around the world, attending concerts, road tripping and restaurant hopping but for now, I’m still healing. Slowly incorporating things I used to love like short walks and listening to music in short moments on good days and just giving my body the time and place to rest and recover.

Here’s to a healthier & happier tomorrow,

Lauren, The Wellness Aesthetic