185 – To Burnout & Back – My Secret Struggle with Long COVID

October 23, 2025

Episode #185: To Burnout & Back – My Secret Struggle with Long COVID 

In this episode of the Volunteer Nation Podcast, Tobi Johnson steps away from her usual format to share her journey through Long COVID, from the first onset of symptoms to the long road of recovery. 

Tobi opens up about the physical and emotional challenges she faced, the lessons learned along the way, and the radical self-care practices that helped her heal. She also reflects on what this experience taught her about compassion, resilience, and the hidden toll of chronic conditions. 

Whether you’re navigating Long COVID, struggling with burnout or chronic fatigue, or supporting someone who is, this episode offers hope, understanding, and practical wisdom for the healing journey. 

Burnout – Episode Highlights 

• [01:57] – The Onset of Long COVID 
• [04:11] – Coping with Symptoms and Seeking Help 
• [06:06] – Navigating Life with Long COVID 
• [08:54] – The Emotional and Physical Toll 
• [11:23] – Struggles and Realizations 
• [12:20] – A Catastrophic Flood and More COVID 
• [15:04] – Living with Chronic Fatigue 
• [21:16] – Seeking Recovery and Radical Self-Care 
• [30:44] – Struggling with Weekend Fatigue 
• [31:29] – Redefining Rest and Recovery 
• [32:35] – Challenges of Setting Boundaries 
• [33:35] – Dealing with Brain Fog 
• [35:16] – Steps to Recovery: Mental Health Counseling 
• [36:05] – Functional Medicine Approach 
• [38:17] – Primary Care and Specialist Support 
• [42:49] – Physical Therapy and Activity Pacing 
• [44:37] – Nutrition and Lifestyle Changes 

Burnout – Quotes from the Episode

“I don’t want people to experience what I have experienced, but I know sometimes we don’t get a choice. So maybe that’s why the universe sent me long COVID, to help other people with their chronic conditions.”  

“If you’re struggling with burnout or struggling with fatigue or some chronic condition, there is absolutely hope, and I want you to know that.” 

Helpful Links

• Volunteer Management Progress Report 
• VolunteerPro Impact Lab  

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Episode #185 Transcript: To Burnout & Back – My Secret Struggle with Long COVID

Tobi: Hey there, friends, Welcome to another episode of the Volunteer Nation podcast. I’m your host, Tobi Johnson, and today I’m going to do something completely different. This isn’t like my normal episodes where they’re cha block full of tips and tricks and trends and. Ideas and opinions and wonderful guests and insights and all that good stuff. 

Today I want to talk about, something very personal and I’m usually not a very out there person, believe it or not. I can be very outgoing when I’m working. It may feel like I am a very public person. I’m actually not. I keep my private life pretty private. I share a little bit about things we’re doing, but you know, I don’t post about my private life much on, on social media, and I don’t talk about all the things that I struggle with. 

And it may seem from the outside that things are easy breezy and just come naturally and all that. And I wanted to share a different side today. And I wanted to share something that I’ve been struggling with for about, I would say, at least the last two to three years. I’m not quite sure when it all started. 

It’s kind of hard to figure it out, but I want to talk about my journey. To burnout and back, and my secret struggle with long COVID. Very few people know that I’ve had a long COVID and I’ve been struggling with it for a while. I’m on my way to recover in my mind, but I wanted to share this. It feels strange. 

It’s a little bit uncomfortable, but there’s a reason why I want to share this, and I’ve been sitting on this story for a long time, for months, and saying, when am I going to share this story? Am I going to share this story? I should share this story. Partly because when I was really in it, it was very hard to talk about because I was struggling a lot. 

But also, I’m now on the upswing. I’m recovering and. I’m ready to talk about it. I’m seeing major steps ahead in my recovery. I’m feeling positive about it. I no longer worry that I’m going to be wiped out for the rest of my life, and so I know that burnout. Regardless of the reason burnout is happening, whether it’s from work, from chronic fatigue, from a condition or disease that someone’s struggling with, that it’s a reality for a lot of people, and particularly a lot of people in the nonprofit sector and the people caring sector. 

So, if you are one of those people, this episode is for you. If you know one of those people, this episode is also for you. So you can better understand how to support your colleagues, your friends, your loved ones, to get an inside view because not everybody talks about what it’s like. And I kind of wanted to do that today. 

I wanted to help others who are struggling with burnout. Chronic fatigue, chronic conditions. I want to let them know that there’s a light at the end of the TU tunnel by sharing the sort of journey I want to share. I wanted to share this story. Because I want people to know when they think there’s something seriously wrong with them, that they’re not crazy because I went through that myself. 

I’ll talk about that. I want to share because the supervisors and loved ones offer want, often want to share support, and they really don’t understand what’s happening. And so, I want you to kind of take you behind the scenes and talk about this very long journey because it takes a long time to recover and to all of us who want to. 

Good quality of life. I want you maybe, maybe the story is takeaway from the story is you have a right to put yourself first. That’s a key learning that I had to learn through this process. This episode is not medical advice. It’s simply my story. I hope it can help you. I’m going to share it. My whole treatment, what I decided to do to help myself get better, but that may not be the thing that works for you. 

So, you definitely need a team around you. And I’ll talk about the team that helped me get to where I am today. And. It is a little bit emotional. I didn’t think I would get emotional, but I’m feeling a little bit emotional. So, we’ll see how I can do because it’s been a long time and it’s been, been something that, um, I’ve carried for a long time. 

So, so that’s what I’m here to do today. I hope it can help you, whatever. You know, experience you’re having, whether you’re a person struggling, a person who wants to support somebody who’s struggling, or a person who doesn’t wanna get to where I got, not that I had complete control over getting COVID and having long COVID, but. 

If you’re working too hard and there’s things you’re doing that aren’t healthy for you, maybe this is a good nudge for you as well. So I, I don’t want people to experience what I have experienced, but I know sometimes we don’t get a choice. So maybe that’s why the universe sent me long COVID. Was to help other people with their chronic conditions. 

So let’s talk about how this all started. So I’m gonna tell this story and it’s, it starts back in February, 2020 and my husband and I were in Seattle. I’m from the Pacific Northwest and my husband had a conference there. He was getting a fellowship, getting awarded a fellowship. So we were at a big conference. 

Lots of people. I remember us going downtown on our last night and being, having dinner and meeting friends in a bar, uh, and having some dinner, having some drinks, super crowded. Didn’t really know, hadn’t heard a little bit about a COVID here and there, but when we flew back, it hit that COVID ha was active in the Seattle area and. 

On the way home, I started to get a chest infection of some kind, and I’ve had bronchitis and chest issues in the past. I have other conditions that I’ve had problems with my lungs, so I contacted my doctor. And she said, okay, I want you to drive around the back of the building. I don’t want you to get outta your car. 

They had to come out of the building in hazmat suits with these white hazmat. They look like mpa Lupas, okay. They had these masks on. She did a. A, uh, flu test. The flu test came back positive. They did an albuterol treatment. I was sitting in the front seat of my car and they were doing an albuterol treatment outside because they didn’t, there was, they were not set up and she thought I had COVID D but the health department to apartment in our local area would not allow her to test me for COVID because I had already tested positive for the flu. 

And at the time I asked her, what’s the. Possibility that I have both. And she said, I don’t think so. I think you just have the flu. Uh, we gave some, my husband, some Tamiflu. I went home, everything was fine. After a few weeks, I recovered. And so that was that. I didn’t think I had COVID. I was fine. And then in November, 2022, this was almost two years later, I actually did get COVID and I pretty much knew it pretty early on. 

And my husband and I are, you know, we’ve been vaccinated. We had lots of COVID tests, so I did my COVID tests, went to the urgent care clinic, got. My test again, and they sent me home with a prescription for Paxlovid, and I took that prescription and had a paxlovid rebound, which meant that I had COVID twice back to back. 

So I got better. And then a day later I started getting sick again. And I remember watching, we had a, my husband bought a. A, um, pulse oxometer, and I was watching my pulse, oxygen, oxygen in my, in my blood going down. And it was a bit concerning, concerning, but, you know, and I also started having tinnitus or tinnitus. 

I remember laying on the couch up in the bonus room. I was in the bonus room. In our house for I think 16 days in, um, quarantine. When my husband would go to work, I would go downstairs and do a little work. I would go to use the restroom. I was in the sleeping in the guest bedroom. I used the guest bathroom and it felt like I was in cell block 32 because my husband would open the door and like slide a tree, tree of food in for dinner and then shut the door because we didn’t want him to get COVID and he didn’t, which was great. 

So, but the paxlovid, I couldn’t believe it. I started to get better. I’m like, wow, this stuff works like amazing. And then I started to get better and then I rebounded. And when I was ready, when I, I kept testing myself because I needed to go to a speaking gig. And the last day I tested negative. And back then you really weren’t supposed to travel. 

Tested positive in any way. So after that, I went to a speaking gig and I was doing fine. I met with a colleague. I did my talks. I even videotaped some shorts for my client. And the morning after my talk, I could barely get out of bed at the hotel, and I was worried I wouldn’t be able to go home. I was so tired. 

And when I got to the airport, my heart rate was speeding up, slowing down, speeding up, slowing down, and I was really worried I wouldn’t be able to get on the airplane. But I, I’m a survivor, so bootstrapped that sucker, got home and just kept resting. And my husband just said to me Too much Too soon maybe, huh? 

And I thought, yeah, probably too much too soon. So went on with my life, started to feel tired. Um, during the pandemic, we were pretty active. I had a garden going. My husband and I would sit outside, we’d go on power walks. We were really pretty active in the pandemic, but by 2023, I had started to feel tired. 

And I didn’t know why. I thought, am I, is this more menopause? I thought I was done with that. Is this ’cause I’m aging? Is this burnout from work? I had already set boundaries on my work. I wasn’t working weekends, I wasn’t working late hours. I was like, why? Why am I feeling so tired? And so I also started waking up and I would wake up and so I started in about 2023 or. 

Yeah, I would say 2023. I can’t even remember when things started. I stopped sleeping a full night’s sleep, so I would wake up after five to six hours of night of sleep and I could not go back to sleep. And so I started living with chronic insomnia and anybody who’s lived with chronic insomnia, you know what I mean, it’s life. 

Life is hell, because you just never rested. And so that went on for a while. I started try to tried all kinds of medicine over the counter, all kinds of things to try to sleep. None of it would help. And I just sort of lived with it and thought, well, maybe this is how my life is now. Um, I, in January of 2024. 

My husband and I were in our house in the Pacific Northwest, came home to a catastrophic flood. There had been a, so this is another COVID story, but it starts with a flood. So we had a, we had a catastrophic flood. We walked into the house. There had been unseasonably. Cold, a cold snap, and it had burst almost all the, the pipes in our house. 

So we immediately had to get to work, renovating the entire house, which meant we didn’t have a place to live. So we started at a hotel, we did Airbnb, we stayed at my parents’ house. We were also at the same time. As a family, moving my parents to a assisted living facility. Uh, so we had the house up for sale, our family home, and so that was emotional. 

We stayed in multiple places over the four months. We had our kitty cat in and out of shelter. The animal care. Not the animal shelter, but boarding. So she was boarding off and on, which was horrible. We would go and visit her and cry. So it was really tough. One of the Airbnbs, we stayed up, stayed at, had a ant infestation when we were there. 

I’m telling you, this was like so much. So we were about four months living outta plastic bins, moving from place to place and then renovating. And because our house had, it was a complete flood, so all the floors had to get ripped up. All the cabinets, everything had to go and it was, we had a great team working and they really helped us get back into our home quickly. 

But while we were. A couple weeks into that whole process, we were at a hotel and we got COVID in the hotel. And I think that was my husband’s first bout of COVID. He started to get a cold and I said, you think you might have COVID? And he did a test and yes, he had COVID and we were in the hotel and I’m like, we can’t leave our hotel room. 

What are we gonna do here? And I didn’t have COVID right away. And he said maybe we should get two hotel rooms. And I said, oh, I can’t even, I can’t even move again. I’m so stressed out. So I said, I’ll just wear a mask around you. Hopefully I won’t get it. Well, anybody who’s been in a room with somebody with COVID knows you’re gonna get it. 

So I got COVID. So we were managing meeting with, um. The Allstate adjuster, our with our adjuster, our insurance adjuster meeting with like the contractors, meeting with people and we had COVID, so we were wearing masks. We were walking social distancing, meeting with people out outside. We’re like, look, we have COVID right now. 

We’re not even really, so anyway. So I think so long story short, how it all started, I think I had three bouts of COVID and even before the catastrophic flood, I was already feeling really d really my body was just in it, total exhaustion. But while I was through the, the flood and we were living outta boxes. 

I continued to run my business. I continued to have, I remember hosting and my volunteer pro members probably remember it too. I was in the lobby of the hotel, like doing seminars and stuff, so, so I. All that to say, at some point I started questioning whether or not my life was just gonna be this way. I would get five or six hours a night of sleep. 

I would feel, uh, I had ear ringing. I would, it felt like I had been at a concert the night before and, and that my ears were ringing from that concert. My ears are ringing right now, but they’re not as bad, but. I started to have other symptoms, like my muscles started to hurt. I started to be irritable and depressed. 

Well, wouldn’t you be if you never got sleep? I would get more tired if I exerted myself, even the normal tasks that I wanted to do, like just go outside and garden. Or go for a walk. I could not bring myself to do. I was struggling with work, and as I was, I had deadlines. I was missing deadlines. My brain was fogged. 

I couldn’t think properly, I couldn’t think clearly. Sometimes I couldn’t breathe properly. I, I remember going to a training and I arrived in the training room and they. The folks I had come down from my hotel room and they said, are you okay? And I said, what? What are you talking about? You’re breathing really weird. 

And I thought, oh really? Huh? That was the first time I heard somebody recognize that my breathing was different. Forgetfulness. I started making mistakes that I never make in my business. It’s like, what? What are these mistakes? I’m making nighttime panic attacks. I couldn’t open jars with my hands. They were not strong. 

I have a list of all my, when I first got referred to, when I first got re referred to the Long COVID clinic, um. I remember the intake session. They do an intake on the phone to see if you’re, you know, if this is the right fit and if you are a potential long COVID sufferer. And I remember her saying, I said, you know, I have this pressure in my chest. 

It kind of comes and goes. It feels like a pressure. It feels like just a heavy. Thing on my chest. It’s not on the right side, so I know it’s not my heart. My, my doctor had checked everything around my heart. There was nothing that could be wrong with my, she’s like, look, we’ve done everything. There’s nothing wrong with your heart. 

You don’t have myocarditis you, you don’t have, you don’t have a heart problem. I don’t know why that. Pressure is there and nobody could explain it, and it would come and go. Sometimes it would come with nausea, and when I talked to the intake person at the Long COVID clinic. She said, oh yeah, I just talked to somebody yesterday who ex, who described that exact feeling. 

You’re not crazy. And I remember sobbing on that phone call and I said, you don’t know how good it feels to have someone tell me that I’m not crazy, because nobody could tell me why. And then people kept saying things like, oh, it’s probably from anxiety, or it’s probably from the, I’m like, no, it’s not that I know what anxiety feels like. 

It’s not that. So. If you’ve ever suffered from a chronic condition or burnout or chronic fatigue or long COVID, or if you are feeling like some of these are sounding familiar and you need to get checked out, get checked out. But the for, for folks that are supporting people with these chronic conditions, all I have to say is. 

It is scary for the person who’s experiencing it because they don’t know when it’s gonna end or if it ever will end, so they worry about their quality of life. I started to worry about my ability to be able to, you know, we had just. You know, bought this five acre property, we were gonna get ready for retirement and do gardening and all this great stuff. 

And I thought, I don’t even think I’ll be able to garden anymore. So it’s, it’s it, there’s grief happening, there’s fear, there’s frustration because you go from doctor to doctor trying to get help, and nobody seems to be able to have answers. And so if you’re supporting somebody who’s going through this, have a lot of compassion for them. 

There’s other things you go through as well. I remember feeling guilt, shame for not meeting deadlines, guilt for not for taking a nap in the middle of the day. Some days I have to go lay down and sleep for three hours. I am not a napper, y’all. I didn’t even nap as a. A child, my mom would put me in my room and I would pretend to nap. 

And as soon as the TV show was over, I could hear it be over. It was some soap opera or something. I would get up outta my bed and pretend that I had been sleeping. Oh, like I’d pretend and act like I had just woken up. I’m not a napper, never a nap, even as a child. So this was quite, and being exhausted. I remember traveling for work. 

And having to really jazz myself up to be a professional because I’m a professional speaker, I’m a professional facilitator. This is what I do, and I need to be all on when I’m on stage. And I remember coming home and just being devastated and wiped out after that. So I knew which things would trigger me even. 

I remember having a three hour zoom chat with a friend of mine who I really love and respect and been long time friends with, and she also has gone through some long-term fatigue. And after a three hour zoom, I was completely wiped out and I’m like, how can a great conversation with a good friend make me tired? 

I don’t get it. So any type of emotional, emotional experiences, positive or negative would wipe me out. So, so. That’s the story up to this time and after the break, I wanna share with you what I did to recover, because I think that’s probably more important and probably more interesting. But I just wanna share, I wanted to share some of the, some symptoms and the feelings because you might be going through these things. 

And I, some estimates are that one out of 10 people suffer from long COVID and they don’t have a lot of research. There’s research going on. The, the most of the best information comes outta the UK and the National Health Service. But it’s a lot of unknowns. There’s a lot of unknowns still, as with many chronic or fatigue related conditions, autoimmune diseases, I mean, I have autoimmune disease as well, but, uh, so lot. 

I’m kind of familiar with the unknown in some of the other conditions I struggle with, but this one is a big one. So I’m gonna take a quick pause from my, uh, discussion about burnout and my journey to burnout and back. And I wanna talk, I’ve been talking about my secret struggle with long COVID. I haven’t talked about it really publicly. 

I wanted to a little bit, just a little bit. Well, obviously I’m doing it because I, I got over my, uh, discomfort with talking about my private life. But after the break, I wanna talk about what I did to recover, because there is hope. If you’re struggling with burnout or you’re struggling with fatigue or some chronic condition, there is absolutely hope, and I want you to know that, and I want to share what I did to get better. 

So don’t go anywhere. I will be right back after the break. Hey, are you looking to upgrade and modernize your volunteer program? Or maybe you’re building one from scratch and you’re just not sure where to start. If so, we’ve got the perfect resource for you. The Volunteer Pro Impact Lab, having built several direct service programs from the ground up. 

I know that it doesn’t happen by accident. It’s a clear process that takes careful attention with a focus on impact. In the end, you need a system in place that’s clear, standardized, efficient, and that gets results. In addition, and maybe this is the most important, you need a volunteer program design that directly contributes to your organization’s most critical goals. 

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Regardless of how large or small your organization is or what your cause impact area or focus is, our program development and implementation support model will help you build a strong foundation so volunteerism can thrive at your good cause. If you are interested in learning more, go to ball pro.net/join and we’ll share how to get started and what’s involved. 

Again, that’s ball pro.net. Forward slash join. 

Hey friends, I am back from my conversation to burnout and back my secret struggle with long COVID, and I’m hoping that if any of you listening are struggling with any kind of chronic fatigue, for whatever reason, that this second part is gonna help you feel. Some hope. Again, I’m not a medical professional, so I’m not necessarily recommending specific treatments, but I do wanna kind of give you an understanding of the totality of all of the things that I needed to do to get better. 

’cause it wasn’t one thing. Uh. It took me a long time to acknowledge that I was even sick. I kept trying to put it off as working too hard, stress, aging, all that. So it took me a fair amount of time to actually step up and say, wait a minute. I’ve gotta do something about this. I remember going on the internet and just. 

Looking up, um, how to recover from burnout quickly. I thought I could get, I’m gonna get better in like a two weeks. I’m gonna do like an intense self-care routine. Well, actually that’s not gonna work. So if you’re struggling, it’s, you gotta have patience. So. But here’s what I did to get better. Well, first of all, my husband had been listening and hearing me complain about all these different, um, specific things I had going on. 

And the thing that I really, I guess, finally made me realize that I was. Ill, there was something wrong was the fact that I couldn’t do even the things that I wanted to do. Like I wanted to do it, but I could not get my body to do it. And I was starting to spend every weekend on the couch watching Premier League Football, which if you know me, you know I love me, some Premier League football. 

I’m a huge soccer fanatic. Chelsea’s my team, Tottenham’s my. Uh, husband’s team. We are arch rivals, but that doesn’t matter. We love each other and we love to watch football, and I’ve played soccer since I was about 12 years old. So huge fan of soccer. So it wasn’t that bad to lay around all weekend and watch football. 

But I also felt really guilty. I felt this deep sense of guilt that I wasn’t doing the things that I should be doing around the house, that I wasn’t even during the week. I’d have to take naps in the middle of the day sometimes because I simply could not make my brain work. I was making mistakes at work. 

I felt horrible about my level of productivity. I’m a little bit type A. I like things to go the way they go. I’m highly productive, so I’m not used to not being productive. I was missing deadlines. I felt just awful. So there was a deep, difficult guilt and shame to deal with. I also couldn’t be there for my family the way I wanted when we were moving my mom and stepdad out into the new property. 

I was there for what I could be there for, but I just couldn’t manage much more than. Keeping myself surviving, basically. So it was hard. And I finally started to get help. The first thing I realized was that I needed to engage in what I called radical self-care. I’m sure somebody else has called it that already, but in my mind I would just say you need to engage in radical self-care. 

And I needed to realize what that meant to me in all domains. Now, for me, radical, I’ve done some self-care like, oh, let’s go to the spa, get a body scrub, or let’s go on a girl’s weekend and meditate. Or let’s take a mindfulness-based stress reduction. And I know I sound like I’m minimizing those things, but back in the day I thought that was what, self-care, that’s all it was. 

Although I had been meditating to manage stress. I didn’t realize what radical self-care meant, and so I started to explore that radical self-care for me required mindset shifts. So there were some key mindset shifts. One was that my priority is me. That is really hard for someone who, and many of you in the nonprofit space are caregivers. 

Many of you who lead volunteers and lead organizations, you are people who take care of other people. And for me to say my priority is a hundred percent me was really difficult, but I knew if I didn’t do that, I would never get better, and so I had to be selfish. In a, and people will say self-care isn’t selfish, but those of us who are givers and helpers, it’s very hard for us to say, my priority is a hundred percent me. 

Now I don’t have children, so some of you, you can’t ever say, my priority is a hundred percent me, but I had that privilege to be able to do that. The other mindset shift I had to make was pushing through is not an option for me anymore. And I had been, as a young athlete, as a business owner, as a person who’d gone through plenty of trouble in my childhood, that pushing through was a way of life for me. 

And I had to realize that pushing through wasn’t an option, and that there were Bo signs my body was giving me that I couldn’t push through anymore. So pushing through was not an option anymore. Took a while for me. All these mindset shifts didn’t happen overnight, by the way. Third thing is. I used to be so feel so guilty when I would lay on the couch all day just watching tv. 

It just, it’s not my jam. It’s not how I spend my life usually. I love to watch TV, movies and watch shows and series. I get involved in series. I mean, I, I, I love good films, all that, but laying around for the entire weekend, I felt like I was running from Monday to Friday, just skipping across. Just hopping from stone to stone to stone as fast as I could from Monday to Friday so that I could reach the respite. 

That was the weekend, and as soon as I got the week to the weekend, I could relax and just crash, and I would crash every weekend, weekend after weekend after weekend, I would crash and so. I started to say to myself, look, when you are resting, you are doing something. When you are resting, you are doing something, you are recovering, and it is an, it is an act. 

So I could start to change and flip my script on what rest was all about. I also start doing a fair amount of reading and podcast listening around chronic fatigue and why rest is so important. The other thing I had to realize was when I say pushing through isn’t an option anymore, that there are even exercise. 

Sometimes exercise, people will tell you, I had to stop. I ignore what people were saying to me. Look, if you just got out and exercised some more, you would feel better. I got that a lot from people. Or just go outside, you’ll feel better. And for people with long COVD, that is the wrong answer. And some people and people with chronic fatigue, that is often the wrong answer. 

To just go out and push yourself harder, you will feel worse and you’ll experience more crashes. So. And then I had to work with the guilt that comes up from boundary setting. Like saying no to people. No, I can’t do that. I’m sorry. I can’t do that. I can’t be there for that. It was really hard and it still is. 

It still is. ’cause I still crash from time to time. Um. And the thing about boundary setting and feeling guilt is accepting that it may not ever be possible to get rid of that guilt. I was, I’ve been reading some really good books on boundary setting. I’ll, I’ll post them in the show notes, but it may not ever be. 

Totally possible to eliminate guilt when you’re setting boundaries and saying, no, sometimes you just have to work with it. And so I had to start saying, yes, you feel guilty, but that’s okay because you know what your priority is a hundred percent you right now. It just is. You will not get better unless you do this. 

And so I had to really like coach. So those are some mindset shifts. A few other things I did, but first and foremost was the shift in mindset. I had to really coach myself because, and it’s hard when you’re tired and you have brain fog and you’re dizzy and you know you’re making mistakes. And I remember when we were doing the remodel on our house. 

Two mistakes I made that just blew my mind. One was I wrote a check to one of our contractors in the wrong amount. I was only gonna pay him partial, and I ended up paying him for the full amount in my check, and I realized later it’s like, wait, what? Ugh, I wasn’t, I was only supposed to make a progress payment, and then I remember another check where I wrote it to the wrong contractor. 

The name on the check was the wrong contractor. Now I do the, the bills in our family, there is no way I would make that mistake. So I was like, what is your brain? I used to call it trauma brain, and I thought it was because of, just because of the, the flood and the trauma. I called it trauma brain. I said, do you have tr I, I told my husband, I have trauma brain. 

My brain no longer works. I can’t make my brain work. So it was really one of my special skills is focused, intense ability to focus. It was gone. It was gone. So, alright, let’s get back to what I did to get better. So I hope that you, you’re not getting bored with my story. Please. I hope you’re not getting bored with my story. 

Well, if you are, you’re already tuned out, so, but let’s talk about what else I did to get better. For those of you still listening who want, who are struggling or wanna support somebody who’s struggling from. Chronic fatigue. Let me tell you the few things I did. Again, I’m not a doctor. This is a holistic approach and it may or may not be for you. 

So let me talk about what I did. First of all, mental health counseling. I got a counselor, started working with a therapist. Um, shout out to Diana Brown Taylor Behavior Medicine Institute. Or to Behavior Health Institute, I needed to learn how to set better boundaries because I knew I had to do a behavior sh shift in order to change. 

So at some point I realized that along COVID, and it was like, okay, to get over this, it’s gonna take years probably. So you’re gonna have to change behavior. In order to recover faster. So you’re gonna have to change your mind and you’re gonna have to learn how to set boundaries better. And so I started seeing Diana for that particular thing. 

It’s like how to treat myself better, how to put myself first. I did not know how to do it. And so if that’s you, mental health counseling may help. Okay. Second thing I did. Functional medicine. So functional medicine is different than allopathic or regular medicine in that you are working to support and make stronger your body’s natural systems. 

And there’s usually some deficits in your systems that aren’t working properly. And with long COVID, there were, you know, you have. Basically virus that’s still in your body. Well, everybody has, when you have a virus, you still have virus viral load in your body. But with long COVID that you, you have, they think that it, the virus resides in your tissues and. 

That’s why you get these in inflammatory and other types of responses. So, so I did tests of my blood and everything and figured out where I was deficient. So I had extremely low vitamin D. I mean, I was down to the, almost to the very, very bottom of vitamin D. So I started taking 15,000 IUs of vitamin that would just weigh a lot of vitamin, do not do any of this without a medical professional. 

And after a while I had a really high vitamin D and I had to. Uh, you have to be monitoring this stuff. You cannot do this on your own because I, my, my endocrinologist is like, look, you need to stop with the vitamin D. I said, well, let me lower my D dose. So, uh, tests and supplements to restore my gut health. 

’cause my gut, you know, your gut is part of your immune system. It. Absolutely essential. So now I, I drink kombucha. I eat, I make sure to eat prebiotic and probiotic food, so fruits and vegetables, and also anything that’s fermented. I try to eat some fermented food. Uh, I took supplements to reduce inflammation, which I continue to do. 

To support my endocrine system, as I said, to build back my vitamin D levels. Just everything that was needed to start to build back. And functional medicine is not a overnight success. It doesn’t happen that quickly. So shout out to Dr. Layla Aduna at Functional Medicine md. She helped a lot with me identifying where there were deficits in my, in my, um. 

Just in my supplementation and just in my body. And then on the regular medicine side, my primary care physician, at some point she said, you know what? I feel like we’ve checked your heart. We’ve checked this, we’ve checked that I have an exceptional doctor. I, she’s been my doctor for 16 years. I told her she cannot retire before I do. 

So shout out to Dr. Amy Bentley at Summit Medical Services, who just kept me. Finding a path. She always believed me. She never questioned when I would talk about my strange symptoms, and at some point she said, you know what? What if I. Um, what if I refer you to the Long COVID clinic at Vanderbilt in Central Tennessee? 

I’m in East Tennessee. Vanderbilt is in, in Central Tennessee, and I said, okay, let’s give it a go. So I contacted them and shout out to Dr. Sarah Martin at Vanderbilt University’s adult post-acute COVID clinic because she’s been a godsend. If Dr. Bentley would not have thought of referring me. If I had not seen Dr. 

Martin, I don’t believe I would be where I am today. I think I would still be really wiped out. I would not know. I don’t know. I just would not have known what to do. I just wouldn’t have. So I, I feel so, so lucky and privileged and blessed and whatever to grateful to have those two amazing doctors help me figure this out. 

So, and again, when I was referred to the Long COVID clinic, my intake session, I was like, Ugh, they’re not gonna believe me. There’s too much. And she, at the time, she said, write down all of these. That’s the reason I could list right now, all of my, um. Symptoms before the break. I told you about some of them. 

She said, write them down because you won’t remember them later. And I said, oh, come on, they’re, it’s so intense. She said, no, no, write ’em down. You won’t remember ’em later. And I don’t remember. I didn’t, to this day, I don’t remember some of the symptoms. I don’t remember what it felt like to have these symptoms. 

So I’m down to only a few now, which is great. So one of the things in terms of, I both did functional medicine, which is more supplementation. And lifestyle and nutrition. I also did allopathic, so I did prescription medication and Dr. Martin recommended I tra Take Deluxe Tine, which is another name for Celexa, which is given to people with fibromyalgia, and it’s an SSNI. 

You’ve probably heard of SSRIs. It’s similar. Works with your serotonin and your brain. My mom has fibromyalgia and I believe that I may have a, a case of it. My brother has it as well. Uh, but I don’t, I’m not debilitated by it. So, um, I’m now to the point where I’m two weeks, I’m weaning off the deluxe tine. 

I’m two weeks away from not taking it at all. It was very difficult to go on. I’ve been taking it for about a year and it was. Really horrible to, I kept text, I kept messaging them. My treatment team, I, I can’t do this. It’s too hard. I’m tired all the time. I can’t get out of bed. They said, no, no, just keep going. 

You’ll be okay. And I was, I ended up taking a very, very tiny, the lowest dose you can of deluxe tine. It still makes me groggy. It made me, I’m a usually a bounce outta bed person. I’m a morning person. I could no longer bounce outta bed. I ca couldn’t do it anyway when I, when I was feeling at my worst. But it helped me sleep through the night and that was the big thing. 

And it helped me, took away my, my pain in my joints. And so I was much able, it took away the anxiety, it took away a lot of those things. So. In, in a way, I was weighing it out. Do I wanna feel a little bit groggy and feel better in other ways? Or judges wanna feel horrible and still feel tired? And so I had to, you know, you have to people, anybody who, if you’re one of those people who takes mental health, prescription drugs, or you know somebody, there’s often trade offs that you have to decide for yourself whether or not you wanna accept the side effects for the benefits. 

It’s often not as e easy choice, right? But I’m happy to say I’m now tapering off. We’ll see if I can still sleep through the night. I have been able to. So cross your fingers there. Excuse me. The next thing I wanna share. Is I did physical therapy specifically around activity pacing. So shout out to Dawn and Dina at Kramer Physical Therapy. 

They are two women that are awesome. They really helped. I used to call Dawn Delta Dawn, and I’d sing her Delta Dawn when I’d go in, but she helped me get back from deconditioning because if you’re two to three years laying on the couch every weekend and you’re not active like you used to be, your body. 

Ma, your muscle mass starts to deteriorate and you can’t if, if you’re long COVID, if you press hard on exercising above your limits, you will crash later. And so we had to monitor. Try and test and see how much I could do before and try not to get, have me crash. And then Dawn said to me when she gave me these exercises, after working with her for several weeks, she said, I want you to do these for the rest of your life three days a week. 

This is your new you. This is how you take care of your body. And so I learned a lot from Dawn and she was so helpful to me. So shout out to Dawn. Um, so p PT and activity, pacing it is important for you to exercise, but it needs to be monitored and you need to work with a professional. So. I also continue to do app-based on this great app called Hinge Health Exercises for some vulnerable body parts of mine. 

Like my shoulder, I have arthritis in my shoulder, and then I also have some knee pain. Lately I’m exercising and strengthening, so that doesn’t take me down. Okay. Let me just share a few more things then I’m gonna just rec, give you some recommendations and log off. So it feels very uncomfortable talking about myself for this long, just saying, okay, couple more things that I did. 

I focused on nutrition and eating more regularly versus working through lunch, working through dinner, not eating, having blood sugar spikes when I did eat, and now I’m working on weight loss and now I’m, I’m able to work on weight loss. I was not able to do that before and now I am absolutely working on weight loss, so that’s great, but you gotta do things in order, right? 

The other things I did was meditate, which I already knew how to do, and I’d already learned, took a mindfulness based stress reduction class, but I had stopped meditating because I was so tired I couldn’t even sit up to meditate. It just felt like too much. And so when I finally started feeling better, I started meditating again. 

And now I’m meditating fairly regularly and it. Is a great way to connect body and mind and to really tune in, attune and accept. So you’re attuning to things, but you’re also accepting things as they are. It’s very good for you. If you meditate 10, 10 minutes a day, you’re gonna see an overall reduction in your anxiety levels. 

It’s amazing. The other thing I did was be outside more in our property. I spent a lot of time outside in a garden, even if I wasn’t gardening. I’d just be outside. Just we, we used to go down to the water, just walk around by the water in the in bay, in the bay, in palbo, just be outside the sun Nature. It’s a healer, and I started to realize how much I needed it, how much being in my garden really does make me feel better. 

So. Whether I’m getting something done or not, that’s another story. But lately I have been able to garden before I, the only thing I could do when I started to feel a little bit better was gardening some of my pots on my deck and I planted a little bit of herbs and a little bit of lettuce and some carrots, and that’s all I could do last few weeks. 

And over the summer, planted a huge garden built boxes I’ve spent. Eight hours a day in the garden. That was unheard of when I was super sick with long COVID. So nature is a healer. Um, and then finally, honest conversations with my hubby about my limitations. Shout out to Chris. Love you much, and friends who also experienced burnout. 

Shout out to Heidi, you. My friend who had experienced chronic fatigue told me, girl, it’s gonna be at least a year before you feel better. I’m like, seriously? She said, yeah, that’s how long it takes. So, um, you have to be honest, and it took a long time. If you’re struggling from chronic fatigue. You may not have the emotional bandwidth to have these conversations with folks about your real issues, your real challenges. 

So I had to really start to have those honest conversations about, look, I’m not being lazy. I am not being resistant. I’m not trying to shirk my duties around the house, but you know, my husband does his things, I do my things. We share our household duties, and I wasn’t getting mine done sometimes. And I said, it’s not that. 

It’s just I cannot. I can’t, even if I wanted to, I couldn’t. And he was very understanding. Thank God. All right, so to, to wrap up, let me give you some recommendations. You kind of heard my radical self-care. Hope it helps if it even helps one person who’s listening honestly. I hope it helps more than that, but if it just helps one person feel better and change the trajectory of where they’re at, I think this is all worth it. 

So if you’re still listening, maybe you’re that person. So going forward, um, I’m continuing my self care, but now it’s a lifestyle. It’s not an event. So self-care is a lifestyle, not an event in my mind. I’m now reflecting and being really grateful for my health, even if it’s not perfect. And when I feel joy, I try to inhibit and kind of marinate in that joy like. 

Oh wow. I’m feeling happy. Oh, this feels really good. And I just try to marinate in it. It’s good for you. It’s actually, um, remaps your brain to feel that joy more. And then I really respect my body when it speaks. When my chest starts to feel heavy, I know I’ve overdone it, and then I’m like, slow down. You can’t do it. 

But I can do so much more than I used to. My recommendations for you. Give yourself grace. You may be if you’re the person, these are my recommendations for you. If you’re experiencing burnout, you’re worried about burnout, you’re burnout adjacent, you have chronic I illness, any of that, I hope these recommendations. 

Um, resonate with you. So I’m gonna give you some recommendations and then I’m gonna give some recommendations for friends, family, and colleagues. So my recommendations for you, if you’re suffering, give yourself grace. You may be hazy, but you are not crazy and you are not lazy. So. Write that down and make it a mantra. 

You may not. You may be hazy, but you are not crazy and you are not lazy. Okay? Educate yourself. There are fantastic podcasts from long COVID doctors in the UK and others around chronic fatigue. You will hear many stories that sound just like mine, keep advocating and trying different types of medical approaches. 

I am a long-term. Throughout my life, I’ve used functional medicine, alternative medicine in combination with regular medicine. Sometimes the practitioner that I’m working with on either side doesn’t know what they’re talking about or is not resonating with me, that it’s making sense. And in that case, sometimes I’ll find a new practitioner and I need to advocate. 

Sometimes I need to advocate. Luckily. I have found practitioners, especially my primary care physician, who listen and completely understand that my body is strange and it does strange things. So you have to trust yourself. You know better than anyone else what’s happening inside your body. You’re not crazy because it feels that way and not always are their answers, especially with long COVI. 

And chronic fatigue. There are not always answers, but what you’re feeling is still real. Whether or not the medical profession has figured it out through research yet, you know it’s there. Choose reputable practitioners who can partner with you. Do not ever believe in a quick fix for any of this. There is no magic wand. 

There is no single pill. As you saw, I had a whole radical, uh, self-care routine and I’m still living that. Keep up with your COVID vaccines. That’s something, um, I asked. Dr. Martin at the Long COVID Clinic when I was, last time I met with her, or actually two times ago when I met with her, we do telemedicine. 

And I said, I have a question for you. Vaccine times coming up, does it hurt or help me to get a COVID vaccine when I have long COVID? She said, and I quote, well, not, I’m not quoting her exactly, but she said, look. There is plenty of research now that shows that vaccines, when you get COVID vaccines, they actually clear help kill off some of the residual virus in your body that’s still in your body. 

’cause I still have COVID vaccine in my BO or COVID viruses in my body. She said, and you may even feel better. After you get your vaccine. So, uh, we keep up and my husband keeps track and immediately when the COVID vaccine, we get a, a flu in one arm, COVID in the other. And I’ve kept up with all of my other vaccines. 

So those are my recommendations for you. If you’re suffering, if you think you’re suffering from long COVID, try to get in touch with the long COVID clinic. There are not very many. They are starting to kind of go away. Because people thought long COVID was really only impacting people who had been to the hospital. 

I never went to the hospital with, with my COVID. I didn’t have, I wasn’t emergent. Um, but I had it anyway and I still have it, so. Okay. Recommendations for families, friends, family, friends, and colleagues of people with chronic illnesses. Chronic fatigue, long COVID believe people when they share their symptoms, there’s no reason for anybody to make this stuff up. 

It’s not fun. It’s scary when things happen. And nobody has an answer for you. You don’t know how long it’s gonna last. You don’t know what it’s gonna develop into. So just believe people, you don’t have to solve it for them. Just ask them, would you like me to listen? Or would you like me to provide some solutions? 

Usually it’s just, would you like me to listen and just say, I’m so sorry. Just give people hugs. Second thing. The smallest things, even the good things can cause crashes. So it may be a really fun party, but that person’s gonna crash the next day. So try not to ask too much of people that are suffering in social situations, give them a break. 

Even if it’s a fun party, they’re gonna crash. Even if they’re not drinking alcohol, they’re gonna crash most likely. Um. Mind over matter does not work for these types of conditions. So pushing through, getting more exercise, getting up and moving, even going outside, yeah, it would be great, but sometimes any of that pushing through, if people need to rest, could cause more crashes. 

So don’t, it may feel like that’s the right thing to say, but it’s not. Let them work with their medical practitioners to figure out what the right amount of exercise and get them on a pacing program. Don’t push people and say, well, if you just got more exercise, you’d feel better. It’s not the case and it’s something I had to teach myself. 

Um, final thing, give people space and compassion. What they’re going through is very scary and very hard. It’s pretty much having long COVID was the hardest thing, has been the hardest thing I’ve ever gone through in my life. And I’ve gone through some tough times, partly because there’s so much that’s not still not known, and partly because it takes so long. 

And when I started looking back at my notes on my, my, uh. Symptoms and what I went through and my history and the dates, I couldn’t believe it. Like the first time I had COVID was 2020, it’s like six years ago, almost, uh, or five years ago. That I feel really grateful now. Um. I know I have to take care of myself. 

I know it may be a condition I deal with for the rest of my life, and you know what? I know how to do it now, and I could not have done, done it without all the, all the people on my team that I mentioned. I’m privileged enough to have health insurance. I understand that I’m privileged enough to have a husband, privilege enough to have a business that allows me some flexibility. 

Uh, if I did not have my own business, I would’ve lost my job. For sure. So, um, there’s so many things to be grateful for. So if you’re struggling, know there’s hope. There really is hope and it takes some work and it takes mindset shift first. But I hope you can find your team of people that can help you. 

And I wish you the best in everything that you’re trying to overcome. Because it isn’t easy, but it’s important that you’re here for people at some point when you can be so, and your people in your life want you to be well, whether or not they know how to support you in that wellness, just remember that everybody has good intentions. 

All right, everybody. So that’s my very personal take. Oh, I hope you weren’t bored by it. I really do, but, and I hope it helps somebody, at least one person. And that’s it. And next week we’ll go back to our regular programming. So if you like this, of course, rate it, review it, uh, share it with a friend. If you know anybody who’s struggling with chronic fatigue, whether they’re working in the nonprofit sector or not, it’s always good to hear other people’s stories. 

And, uh, join me next week, same time, same place on the Volunteer Nation. Take care, everybody.