My Long COVID Journey
I am sharing with you the story of my Long COVID journey. From the initial onset of symptoms to my path to recovery, It’s been one of my most difficult life experiences that has resulted in tremendous personal growth.
The Beginning of my Long COVID Journey
Initial Onset of Symptoms
When I first started experiencing neurological symptoms, I thought I might never be able to rock climb, run, hike, ski, etc. again. My symptoms started in May 2020, a couple months after I recovered from COVID-19. I initially had back pain and mild numbness in my left leg. My doctor told me it was likely a pinched nerve, so I just shrugged it off. However, one night I woke up with my entire left leg and arm numb. Additionally, I had completely lost my vision and felt nauseous. I began to wonder if I was having a stroke and started freaking out. Minutes later, I regained some of my vision and called my friend and asked him to take me to the ER. I received some blood tests and a brain MRI to check for indication of a stroke, multiple sclerosis (MS), or a tumor. Luckily, my brain MRI was normal. The doctors were still suspicious of MS and referred me to a neurologist. The neurologist ordered an MRI of my cervical spine as well, which ultimately showed no lesions. She was quick to rule out the disease, though I was still unsure.
Symptom Progression
Shortly after my initial episode, my symptoms evolved. The numbness would come and go and the blurry vision would vary in intensity. Then I started experiencing new symptoms: an action tremor, twitching in my hands and legs, muscle weakness/difficulty engaging in movement, extreme fatigue, cognitive function impairment, headaches/earaches, tinnitus, circulation issues, and a rash on my hands and around my eyes. My sweet mother, who is my rock, flew out to Boulder to take care of me. At this point, I could not drive, I struggled walk and perform ordinary tasks, and I was exhausted pretty much all day every day. Despite my fear that I had a neurodegenerative disease, the only diagnosis my neurologist was able to give me was Essential Tremor and mild neuropathy. I asked if I might be experiencing Long COVID. She said that it was definitely a possibility, but there was currently very little understanding about the condition and she couldn’t offer me any medical help.
Adjusting my Health, Lifestyle, and Attitude
During the first couple months of experiencing symptoms, I vacillated between losing faith in my body’s recovery and doing everything I could to get better. I read about other athletes improving their neurological conditions and getting back to an active lifestyle through a combination of positive attitude and healthy diet/lifestyle. I decided that I’d have the best chance of healing if I did the following: (1) reduce stress, (2) be grateful for the good in my life and focus on a healthy version of myself instead of a sick one, and (3) eat a healthy diet.
Reducing Stress
Reducing stress, for me, meant taking pressure off of myself regarding performance at my job. I also needed to let go of my anxiety about the present and future state of my health. Considering I’ve had a consistent pattern of stress/anxiety throughout my life, this was the ultimate challenge. Regarding my job, I had to ask to start working a more flexible/part-time schedule. I am so grateful for how understanding and supportive my employer and co-workers were. I know other sufferers of Long COVID have not been so lucky. Yet, I still was very embarrassed that my brain was not working the way it used to. I was extremely negative and hard on myself for not performing at the level I expected of myself.
Finding Gratitude
Maintaining a state of gratitude and focusing on a healthy version of myself also was not an easy task. I struggled to get past the idea that my body seemed to be shutting down, and I was frustrated that my body was malfunctioning and my abilities were limited. However, I started practicing the meditations of Joe Dispenza, which became pivotal in my journey to heal and find peace within myself.
Adjusting Diet
Adjustment of my diet was a bit easier to manage since I have always practiced healthy eating. This time, I decided to explore whether or not certain foods were causing inflammation in my body and I went on a strict ‘autoimmune diet’. I cut out dairy, gluten, most sugar, and focused on healthy whole-foods. This diet changed over time to best suit my overall dietary needs, as I discuss later in this post.
The Road to Recovery
Regaining Function
In the months that followed, I stuck to my adjusted lifestyle and attitude. My symptoms started improving greatly. I was in disbelief! I was regaining mobility and strength, and I even began entertaining the thought of easing back into climbing and running again. I remember the first time I went for a trail run since I had fallen ill. My legs were unsteady due to both inactivity and the tremors/muscle weakness. I was so excited that I could actually run again that I stopped thinking about my wobbly legs and just enjoyed the movement of my body and feeling at peace in nature.
Easing Back into Climbing
A few weeks later, I decided I’d try rock climbing again. I was scared that my body would not be capable, so I decided to keep it safe and top-rope instead of lead climb. Climbing with the tremor and muscle weakness felt very strange and insecure, but I was ecstatic that my body could actually engage in the movement on the wall again. Over time, I kept slowly building my strength and confidence back up with my activities. I started to become in tune with my body, understand my limits and rest when I needed to, which was still all of the damn time! When I felt fatigued and symptoms started flaring up, I’d take full rest days. This approach seemed to best support my recovery and return to activity.
Finally, I decided I was ready to safely lead a rock climbing route again. I told my friend I was scared that my tremor would limit my ability to pull the moves and clip the bolts. I also feared that mid-way up the route I’d lose motor function. My friend reassured me that I would be fine and encouraged me to maintain my confidence and focus. As I climbed, I started singing and humming in a silly way. My friend joined me. Everyone else at the crag probably thought we were nuts, but it helped me relax and focus on the moves!
With time, I was able to build my strength, endurance, and confidence back up so I could safely lead. I was finally able to get back to exploring the alpine. Oddly enough, the tremor often times nearly vanished while climbing, especially when I was very focused.
My Personal Evolution
For many months, my condition was still highly variable. I would have days where I felt physically strong and had good cognitive function, then I’d have days where I had to rest all day. The overall trend seemed to be upward though.
Another Decline
Then I started to decline again. I realized I had begun reverting back to my old habits. I started putting more pressure on myself with performance at my job, as well as my outdoor activities. I was also losing weight due to my strict diet (and I am already a super tiny gal). I decided it was time to make some more adjustments and find the right balance for me.
Diet Readjustment
I readjusted my diet. Instead of completely cutting out dairy, gluten, and sugar, I realized a more balanced diet was the best option for me. To this day, my diet is very healthy. I eat very modest amounts of gluten and dairy, but I haven’t completely cut these foods out. I eat meals with a lot of fruits and vegetables of different varieties, balanced with plant-based protein sources and whole grains (I was born and raised a vegetarian, so no meat for me). I limit sweets, but I now allow myself moderate indulgence because I believe a little guilty pleasure is good for the soul :).
Leaving my Job
In order to reduce one of my greatest stressors, I decided I needed to take a break from my job. I was still having a very difficult time performing the brain-intensive tasks of an Aerospace Engineer. I had become a bit slower at processing information and I struggled to focus for longer than 20 minutes without getting a headache/blurry vision and jumbled in my thoughts. Over time, I did start experiencing improved cognitive function and would have days in which my brain function was good. But the inconsistency made it hard to work a demanding full-time job with important deadlines.
I started off on a leave of absence. But, while I had full support from my employers and coworkers, I felt like I was still not in a place physically or mentally to deliver the work that the job deserved and it was stressing me out A LOT. I resigned from my position, which was one of the hardest decisions I have ever had to make. For years I gave my blood, sweat, and tears to my career path and I was very much invested in the job and the wonderful people I worked with. Not to mention, having no idea what was in store for my future in terms of career and financial support made me feel very uncomfortable. However, I ultimately had to choose my health. I knew this was the right decision for me to make growth in both my physical and mental health.
My Current State of Health
It has now been two years since I started experiencing Long COVID (or whatever nervous system dysfunction I am dealing with). On the upside, I feel like I have come a LONG way in my health progression. However, my health has not completely returned to normal and my path is full of ups and downs. I am grateful that my health has improved to the point where I can once again enjoy the outdoor activities I am passionate about.
How I’ve Gotten Strong Again
Oddly enough, this past year I somehow managed to climb very strong and still reached a high level of fitness in alpine climbing and skiing. I give credit to my healthy lifestyle and allowing for adequate rest. I also attribute the success to approaching my activities with gratitude and focusing on the experience more than performance. I still have to adjust my lifestyle. I do not push my body every day the way I used to. I have limited bandwidth of physical and mental energy and need to nurture myself and take devoted rest/recovery days. I still have a tremor that varies in intensity, as well as flare-ups in other symptoms. I also took a step backward when I got COVID for the second time in January of 2022, which triggered the wrath of this dysfunction all over again (despite being vaccinated). Still, my health continues to improve and I have faith that I will keep getting better.
The Silver Lining in My Long COVID Journey
Finding my True Value
Finding my new normal on this Long COVID journey has included a lot of trial and error. I do my best to love myself with all of my imperfections. But honestly, I still often get emotional and feel weak and worthless. I still get embarrassed when I sometimes forget words during conversation or when my tremor is noticeable. I get frustrated that I still struggle to focus and stare at a computer screen for extended periods of time. I had become used to defining much of my value by my physical abilities and intelligence, and it’s hard to break that pattern and find worth in myself for who I am. However, I am working on it daily.
Discovering Meaning in my Life
I do recognize how far I have come in this healing journey, not only with my physical health, but emotionally and spiritually. I am learning to accept myself, count my blessings, and find the silver linings in the direction my life has taken. In a way, I have actually been able to live a more meaningful life through this experience. I have allowed myself to become more present, vulnerable, and empathetic. In the past, I was constantly trying to stay above water and get through to the next day, with work and activities being all-consuming. Nowadays, I have allowed for more time to show up for my loved ones. I have time to be silly, curious, and appreciate life’s little moments. Furthermore, I am now exploring a path of helping and connecting with other folks, which I know will be rewarding. And…not to spoil the ending, but everything is gonna be OK.
I hope this story resonates with many of you, even if you are not experiencing Long COVID or another physical illness. Life is full of twists and turns and each of our situations and physical/mental/emotional journeys are unique! I’d love to hear more about your experience/journey with physical and mental health challenges if you wish to share. Feel free to leave a comment or message me! Be well, and know you are not alone.
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