How I learned to avoid the Long Covid push crash cycle

How I went from bi-weekly “flares” for over a year to stabilizing my body’s nervous system

TW: In the beginning of this post, I detail what my flare ups felt like for me and how they impacted me both physically and mentally. If you are in a flare up right now, or if reading stories like this right now are too triggering for you, I encourage you to skip ahead to the section titled “Where things started to click in making progress in my recovery…” where I begin talking about the tools and resources I used to help me avoid crashes. I learned that being in the right head space was important before I read about other people’s experiences with flare ups. Before I learned how to somewhat cope myself, I found other’s peoples stories of flare ups to be too triggering for me, something I also go into in this post.

Living with Long Covid means dealing the dozens of daily, and sometimes debilitating, symptoms. On top of that, for over a year, I was living in a push/crash cycle. Over exert myself too much physically, mentally or emotionally, I’d crash. Flare ups felt unavoidable and I felt hopelessly trapped in this cycle. The scariest part was that I never knew what “too much” was for me and when a flare up was coming. A “crash” or “flare up” for me felt like the flu. I’d start getting the tingling feeling of the body aches, fever and sweats, headache and exhaustion before the full blown symptoms left me bed ridden anywhere from my shortest flare up being 2 days and my longest flare up being 10 days (This is excluding the month long flare up I had where I had to take short term disability leave. This flare I consider an exemption to my norm and a completely different story all together.).

The average symptoms I’d deal with during a flare were:

• Body temperature dis-regulation. I’d feel extremely hot but not run an actual fever
• Extreme body sweating all day, especially at night
• Splitting headache that started as a sharp pain behind my eye and extended up over my scalp
• Fiery neck pain at the base of my skull
• Swollen lymph nodes in my throat and under my tongue
• Sore throat
• Tender lymph nodes under my arms and in my groin
• Nausea
• Body aches
• Extreme, bone deep fatigue. So tired at points I couldn’t even lift my arm up to reach my water bottle
• Body and muscle weakness
• Heavy limbs
• Extreme, un-quenching thirst (I have since been diagnosed with POTS and have learned the importance of electrolytes and hydration and believe I may have been slightly dehydrated this whole time causing this extreme thirst. Since being diligent about getting at least 80–100oz a day with electrolytes, this thirst has subsided)
• Difficulty breathing, heaviness in my lungs
• Brain fog
• Hair loss

This cycle of events happened every 1–2 weeks like clockwork for over a year.

In another post I wrote about my experience attending the Mayo Clinic’s Post Covid Care Clinic where I was given some really great resources on how to slowly build back up my capacity. And for a while, I was seeing some great improvements. For 2 months I was making slow, but noticeable progress towards building more physical capacity into my daily life. I was up to the full rep count in the physical therapy plan I outlined and even able to complete a 15 minute walk a day. But I still wasn’t pacing correctly and I overdid it in late March which caused me to crash hard. I lost all my progress and was set back even further than before. I was devastated.

I’ve had to stop writing this part of the story a few times because after much talk therapy, I’ve learned that Long Covid has left me with PTSD, so reliving some of my lowest points is very triggering for me despite the immense progress I’ve made at calming my nervous system in the last 3 months. But I feel like it is so important to call out the toll medical events like this take on our mental health. Looking back, it is quite scary how mentally low I got, feeling like there was no hope that I would ever live a normal life ever again. Often wondering if my fate was sealed and being disabled and bedridden at 33 years old was something I just had to accept.

For many of these flare ups, I was so sick that I was purely in survival mode just trying to make it through the next hour, leaving me with no capacity to process how traumatic this all truly was. It wasn’t until I came out of the flare that I was able to deal with what was happening to my body. For a long time, my body was too weak to talk for extended periods of time and at my worst, I had to take breaks every few words because I was so out of breath. This left me feeling trapped in my body, alone with my thoughts. Even if I found the energy to find a therapist, there was no way I could make it through a session so for many, many months, I physically couldn’t access resources to help me cope.

If this is you right now, I really encourage you to just be kind to yourself and find any ways of distraction as possible. Do some somatic tracking if you are too sensitive to sound still, or listen to a guided meditation or somatic tracking session to help you start safely processing some of these stored emotions.

Because of this, I used the limited time I had in between my flare ups to gather as many resources I could that set me up for success during a flare. Many times it seemed impossible, but we push through. Once I was in a place where I built enough lung capacity to make it through a therapy session, I found great benefit in talking to someone who helped to work through the grief and trauma of this chronic illness, the life I lost, and the new life I was moving in to.

Where things started to click in making progress in my recovery…

1. Getting in the right head space

This one was hard but I unfollowed any person online that wasn’t bringing hope and positivity into my life. This was hard because I felt like each person I unfollowed meant I potentially could be missing out on some great insight into the LC community. But after noticing that some creators left me feeling full of dread, I knew that my mental health outweighed any insight their post could have brought me. This isn’t to invalidate anyone’s stories or how they are personally dealing with a chronic illness, it’s just how I found myself reacting to these stories that I knew wasn’t healthy for me. I encourage you to go unfollow at least one account now that leaves you feeling drained or feeling negative about your chronic illness and follow someone who promotes joy or brings you hope :)

2. Stop obsessing over “finding a cure”

Another hard one, but I realized that I was spending any available energy I had on reading reddit posts, medical journals and scouring the internet for any stories of success, hope and miracle cures. I wanted…needed… to hear that recovery was possible and was determined to not give up until I tried every supplement, therapy or strategy until I got better. This just led me to obsess over “getting better” without focusing at all on what really needs to be done, calming my nervous system so my body was set up for success to heal. Unfortunately, Long Covid affects your entire body and each system needs support in it’s own way. There isn’t going to be one magic pill that cures us.

3. Pacing

One of the first things my therapist helped me identify was that I was simply doing too much. My mind was still the healthy early 30’s year old who completed multi hour long hikes around the world yet my body was now dealing with a severe diminished capacity. This is where I became very strict about pacing. I knew I had to seriously cut back on the physical demand I was expecting of myself. With just trying to accomplish my daily tasks around my house like walking to my office, then to the bathroom, then to the kitchen, etc., I was racking up a couple thousand steps a day. I didn’t want to, or could even cut out some of these things, but I could cut out the walking.

First, I started wearing a smart watch that would track my steps. I personally use a FitBit for the clinical trial I’m in. The FitBit app tracks your steps, heart rate, heart rate variability, gives you a “daily readiness score”, and so much more. All of which helped me better track in real time when I was doing too much, when to take the foot off the gas pedal, or plan for days where I needed more rest.

Through the clinical trial, I was advised to never let my heart rate go over 15 beats per minute over my resting heart rate. Since my RHR was so low, that was almost impossible, so my goal is to currently keep my HR under 100. If I see it going up, I sit down and rest. This has been extremely helpful in staying within my capacity limits.

This next step was huge for me. I went all in and purchased this electric wheelchair to get around my house and immediately I was able to keep my steps at or below 1,000 steps a day. No joke, within a few weeks, I noticed my brain fog lifted dramatically, my fatigue lessened considerable and no longer needed daily naps. To me, this was HUGE.

One last thing that really helped in my pacing was just putting chairs throughout the house where I could sit down to complete tasks. I have a stool in the kitchen so I can sit when I fill up my water bottle. I have a chair in the bathroom so I can sit when I brush my teeth and wash my hands. And finally, I got a shower chair so I can sit while taking a shower. Again, this let me feel like I had some independence, but no longer had to exert so much energy.

There is so much to pacing so I encourage you to read more into pacing strategies. Additionally, everyone is different so there will be some trial and error in finding which HR to stay below and how many steps you want to set as your daily baseline. Overall what I learned about pacing is to be kind to yourself and start lower than what you ever imagined. The worst thing you can do is feel like you’re doing too little and slowly work your way up.

4. Low dose Naltrexone

This is the first medication that has actually worked for me in giving me some relief of symptoms. Unfortunately, it is recommended that you start at a very low dose and slowly titrate up meaning it could take 3–6 months before you even see any benefits. Again, LDN is a very personalized approach but I can tell you my epxerience with it. LDN for LC is an off label use but I was able to get access to LDN through my primary care provider. You must get this prescription filled at a compounding pharmacy as Naltrexone is typically used for people dealing with substance use disorders at much higher doses. I started LDN in a liquid form of .5mg/day, increasing by .1mg a week until I reached 1.5mg. At that point, I switched to capsule form and went up to 3mg/day where I currently am. Some people work their way up to 4.5mg a day.

I would say it took about 3 months for me to start noticing a difference but for me the biggest changes were in my energy and brain fog. My brain fog reduced by at least 70% and my energy levels are much higher now. Before I needed daily naps for at least 3 hours to get through the most basic of days. Today, I rarely nap.

5. Cognitive behavioral therapy, brain retraining and nervous system work

I have learned that the Covid virus and the following Long Covid put immense stress on your nervous system. This constant and long term stress weakens your autonomic nervous system from continually being thrown into the sympathetic, or “fight or flight” state rather than having time to return to the parasympathetic state, or the “rest and digest” state. The autonomic nervous system (ANS) regulates involuntary bodily functions like heartbeat, breathing, digestion, and blood pressure without conscious effort. I believe this long term stress is what caused me to develop POTS later into my LC journey.

Talk therapy was definitely helpful in dealing with the emotional trauma and realizing how to be more kind to my body, but CBT gave me the tools to really tap into the calming of my nervous system. The Mayo Clinic referred me to an online therapy platform called Lin Health. This platform specializes in recovery from chronic pain. The medical community has learned that dealing with any chronic symptom can actually be addressed in the same way so they are seeing benefits of people with chronic illness’ like LC go through programs such as this one.

Since working with my new CBT therapist, we are using mind and body techniques to really tap into the healing of the nervous system. So far, we’ve been using breath work, somatic tracking and other tools that rewire my brain to find safety in my symptoms rather than fear, which propels my chronic symptoms. This is known as the fear, pain, fear loop cycle and learning how reacting to my symptoms actually causes more fear, which causes more pain was so enlightening to me. Here’s a simple diagram explaining this cycle.

curablehealth

A post shared by @curablehealth

I’ve only been in this program for about 3 weeks but feel like this was the missing link in my recovery plan and am very excited to see where this goes. It is what I expected talk therapy to provide me and more.

Check out this quick video on one of the breathing techniques I use throughout the day. I repeat this double inhale then exhale 3 times, and repeat this cycle 3 times a day to immediately reduce stress. “Double inhales followed by an extended exhale are the fastest way to bring the mind and the body into a more relaxed state”.

lewishowes

A post shared by @lewishowes

Another great Long Covid creator who shares everything he’s learned from his experiences with CBT for Long Covid is Harry Boby . He started a free online resource community where he has so many great recovery tools. Some of my favorites are his quick, less than 5 minute guided somatic tracking audios, the “crash toolkit” and the community discussion forum where others share their stories and insights. This is definitely one of my feel good, safe spaces on the internet in the Long Covid community and you can join for free here https://on-the-mend.circle.so/c/start-here/

To close out, my last flare up was in early July so I am almost at 3 months since one of my typical flare ups. This doesn’t mean that every day since has been easy. I still have some days where I get extremely tired and worn out faster than normal. I’ve even had a few days where I had some very scary POTS symptoms but overall, I’m learning to listen to my body. I’ve also fully accepted that I am dealing with a disability from this chronic illness. This has let me sink into the reality of where I’m at and work with my body, rather than resisting like I have for so long.

I hope in 3 months, I’ll be able to report back with even more great news of success and healing. And as always, I’d love to hear if you have anything that is helping you calm your nervous system and find healing or any other things that have helped you avoid flare ups too.

Here’s to a healthier & happier tomorrow,

Lauren, The Wellness Aesthetic