Long Covid Podcast

20 - Amy's Recovery & "Positively Covid"

February 03, 2022 Jackie Baxter Season 1 Episode 20
Long Covid Podcast
20 - Amy's Recovery & "Positively Covid"
Long Covid Podcast
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Show Notes Transcript

Episode 20 of the Long Covid Podcast is a chat with Amy Engkjer who has recovered from Long Covid and set up "Positively Covid" which draws on her own experiences in order to try to help people through.

We chat about her experiences with Covid & Long Covid, what she found helped her to recover (and what didn't), and about what inspired Positively Covid - which is a huge resource of helpful strategies as well as the all important Recovery Stories - how important it is to hear that people do recover and keep that hope that we will all get there eventually.

Amy is inspiring to listen to, and I hope there is something useful in there for you too.

Positively Covid Website
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(music - Brock Hewitt, Rule of Life)

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**Disclaimer - you should not rely on any medical information contained in this Podcast and related materials in making medical, health-related or other decisions. Ple...

Jackie Baxter  0:00  
Hello, and welcome to the long COVID podcast. My guest today is Amy Engkjer from Positively COVID. So I'm very excited to welcome her to the podcast.

Amy Engkjer  0:11  
Hello, Jackie, thank you so much for having me.

Jackie Baxter  0:15  
It's wonderful to have you here. So to start with, could you introduce yourself a little bit? Who are you? And what did you do before COVID?

Amy Engkjer  0:25  
Before COVID BC, I guess that would be Hmm. Before COVID and I still am a stained glass artist. I've had a stained glass business for 23 years. I was extremely active. I hiked, I fished - my husband and I fish probably two, three times a week. I have a couple dogs. I live in the Rocky Mountains in Montana. And I was very active. My husband's a personal trainer. So I worked out three times a week. And yeah, just a happy life here in Montana.

Jackie Baxter  0:58  
Sounds amazing. Again, you know, unfortunately, quite familiar story where, you know, somebody who was healthy and fit has come down with COVID. And then long COVID and, and things have all kind of changed and it's, it's horrible. Could we talk through your experiences with COVID? When did you first get sick? 

Amy Engkjer  1:20  
Igot sick, the beginning of November in 2020. And it hit me pretty hard, right off the bat. The day I got sick, I thought, Ooh, this is otherworldly. I felt very, very strange. And then it just got worse and worse. The first week was fever, cough, I never had shortness of breath. So the doctors said oh just stay home and rest. But it just didn't go away. And it hit me mainly neurologically, so I had the loss of taste and smell, which is neurological. But I also the palms of my hands were numb, like if I'd wash my hands. It felt as though I was wearing gloves. So that was a bizarre sensation. Getting in the shower was painful. The water hitting my skin was painful. I couldn't even be in the same room if my husband was running the water. My everything was too loud. So my sensitivity was just It was outrageous. So my nervous system just got jacked. 

And then in addition to the to the fatigue, the fatigue was just awful. I also had pain in my scalp, which was really bizarre. It was like the top of my scalp. I used to say it was sort of like the area that a Jewish man would wear a yarmulke - like my yarmulke it would be burning like it was just on fire, my scalp. I couldn't brush my hair. I couldn't put my head on a pillow for weeks. They thought I had shingles at first but it was just a neurological response from the COVID. 

My neurologist had said I had dysautonomia, so which was just my nervous system was just completely out of whack. The slightest sound would just sound like a gunshot. And it was terrible. It was anguish, I have never experienced physical or mental anguish like that. 24/7 For weeks, and then months on end. You know, I had some reprieve here and there. But it was relentless. And the insomnia was also awful. You know, being awake in the middle of the night alone. At least three hours every night, I would be wide awake, and terrified what was happening to me and not knowing especially getting the virus so early on in the pandemic, no one having any answers and doctors, you know, scratching their heads and just telling me to rest. So that was the beginning.

Jackie Baxter  3:55  
Yeah. And I think you said that aloneness and the scared feeling that you've got. I mean, I think a lot of people will be able to identify with that. Even if you do have a supportive partner, like, like you have and I've had as well. You're laying there on your own and you're just you're not alone. But you are and it's it's a horrible feeling, isn't it?

Amy Engkjer  4:15  
Oh, it's so horrible. Being that alone that you can't explain. It's so hard to explain the sensations that you're having. And, you know, you say to somebody, okay, combine like being the worst hangover that you've ever imagined. And you have the flu, and you're, you know, add them all up and you've lost a loved one. I mean, you're just, it was like poison coursing through my veins all the time and not being able to explain it to people. Often people would see me and say, Well, you look fine. So it was this invisible sort of sickness. It seemed as though I couldn't get across to people how sick I really was and the doctors that I were dealing with, they were wonderful But none of them having had COVID they just couldn't get it. You know, there's just no way. And that was a really frustrating feeling.

Jackie Baxter  5:08  
Yeah, definitely - someone who hasn't experienced it, it just it sounds mad. Did you find that your symptoms - you mentioned that you've had a bit of a reprieve here and there? Did you find that you had new symptoms that would pop up and the old ones would disappear? And then come back again? And that sort of fluctuating symptoms thing?

Amy Engkjer  5:27  
Yes, definitely. I definitely had that it was early on, the numbness in my hands went away. The shakiness that I had my hands were so shaky, that didn't go away for months. But some of the pains would come and go, the pain on my scalp, that would, that would diminish some, but then I would have tachycardia. So my heart rate would go up, then that would sort of wouldn't be the predominant symptom. 

It was interesting that sort of it wasn't until probably a couple months into the illness that I started dealing with psychosis. I mean, I was having these bouts of depression, that it wasn't a constant feeling of depression, it would come on, I would call them hell surges, because literally, it felt like my body was shutting down, and there was a dark cloud over me. And I couldn't imagine living through it. And they would last sometimes for two, three hours, and then it would sort of lift. And I would be like, oh, boy, okay, I got through that. But then they would come out of the blue. So yeah, it was it was so unpredictable. And that was another piece that was just hard to know what was going to come next. 

Jackie Baxter  6:42  
Yeah, the unpredictability definitely has been, it's hard. You know, you don't know when you're going to have a good day. Or if you have a good day, you don't know how long it's gonna last. And planning things is hard enough when you're ill. But when it's unpredictable, Ill it's really difficult, isn't it? So when did you kind of come across the term long COVID? When did you realize that's what it was?

Amy Engkjer  7:03  
Oh it was early on. I mean, actually, it was probably even before I had gotten COVID, I was aware of it, which I have a bit of an issue with the term, because I think I identified with it before I even had it. So I was scared of it. I was scared that I was going to be somebody that got long COVID. And I did. And so yeah, it was early on that I that I came across the term and and then knew it firsthand.

Jackie Baxter  7:32  
Yeah, I guess it was almost like it sort of developed itself for you. Yeah, it's strange, because I was ill before long COVID existed. So it sort of developed with me and the people that sort of got ill at the same time as I did. So it's really interesting hearing about people that knew about it before they got it.

Amy Engkjer  7:50  
Yeah, and I was determined. I mean, I, when I got COVID, I happened to be reading a book by Norman Doig called the "brain that changes itself" about neuroplasticity. So immediately, I felt equipped to handle this, I thought, okay, regardless of what happens, what this virus does, I will recover. So I had that piece in my mind that I was able to carry with me into the illness, and then ultimately, I think helped me recover. Having that piece to work with.

Jackie Baxter  8:19  
Yeah, definitely. So how are you feeling now? Do you feel like you have recovered?

Amy Engkjer  8:25  
I do. I do. I'm done. 

Jackie Baxter  8:27  
Awesome. 

Amy Engkjer  8:28  
Done with COVID. It feels amazing. Yes, but it definitely didn't happen overnight. I mean, it was a good year for me I, I'd say after the first six months or so I started to feel so much better. But it just lingered. It was just lingering. I kind of lingered at this 95% for quite some time. And then, when the fires in the US happened, the town that I live in is a valley and the valley filled with smoke. And it just put me out and I just put me right back months and months and I was extremely sick again, back in bed, fatigued, couldn't do more than a 20 minute walk a day. And then that changed. And then I slowly once the smoke lifted and I was able to resume my routine. And the practice that I had been doing over this last year, then things changed pretty quickly. 

You know, just a couple months ago, I realized that my nervous system was in sort of this looping pattern by listening to so many different experts out there it it became very aware that my thinking about my illness was contributing to my nervous system reacting. And I was almost like in the pain cycle, you know, like somebody loses a limb and they have phantom pain. The limb is gone, but they're still feeling the pain and I would do things and I think I was anticipating the pain. I would try to go out in my garden and I'd pull a weed and ... Oh, that was enough to just feel like I had jarred my system. And the next thing I knew I was having to crawl back into bed. And once I realized that, hey, if I sort of interrupt the cycle that maybe I can get ahead of it. And I had been working on getting ahead of it with positive thinking and other wonderful methods over the year, and I think it finally just took hold. And I remember the day that I was like, Oh, my gosh, I'm done. I'm done with COVID. And they clicked. And I think that it took a lot of different... I had to plant a lot of different seeds over the last year for them to finally come to fruition to say, Ah, okay, here it is, I get it. And it was like flipping on a switch for me.

Jackie Baxter  10:47  
Yeah, it's interesting that you say that the sort of the different things. And a lot of people I think, are wanting the cure. Obviously, it will be different for different people, because everybody's symptoms are different. And some people have organ damage and things like that, which is obviously a different thing. But what I'm starting to realize is that there's not one cure, it's kind of lots of different things that you can do to help. And actually, if you work on your breathing, you do this, and you do that, actually, it all contributes. And that seems to be what you've kind of found where eventually you did enough of those little things that you piled them all up. And suddenly you were standing on the top going "I'm fixed!"

Amy Engkjer  11:25  
Yeah, I love the way you put that. That's exactly how it felt - it felt like all the work that I was doing, and continually being aware of what was happening in my body and what my thinking pattern was, I mean, we're all just a bunch of habits, right? We're a bundle of habits. So if we can continue to create new habits, then over time, we can create a new way of being and I think you're right, that's it was just a lot of different things that I had to practice that that got me to where I am today, and I'm so grateful.

Jackie Baxter  11:57  
Yeah. Are you able to talk through a few of those things, if there's anything that particularly helped just to give a few people, any ideas, because I think like you said, you know, everything is going to be different for different people.

Amy Engkjer  12:09  
So meditation has always been a big part of my life. And initially, I couldn't meditate, it was just beyond my capacity to even sit and meditate, there was just so much going on. I mean, my body couldn't sit, I was just agitated, so agitated. But I was still able to be mindful of what was happening around me. 

And I realized early on that I needed a routine. And in that routine, I needed to make sure that I incorporated first and foremost, a positive mindset. Second, I needed to rest my body and not just sleep, I needed to avoid mental stimulation, you know, being on my phone all the time. And then I needed to nourish my body in healthy ways. And I needed to move - moving was just crucial. I had to walk every day, even if it was five minutes, down part of my block and back, I just had to walk. I think that bilateral movement is so important. And that neuronal growth occurs, when you're walking, I really truly believe that days that I didn't walk, I didn't feel as good. So on days, which were many that I couldn't do much of anything at all, even if I did tiny little thing like, Okay, let me just run through a gratitude list or just set my mindset. And then okay, eat something healthy. And okay, make sure I'm resting well. And then move my body a little bit. And as you know, and many out there, know, I mean, just getting up to go to the bathroom and take a shower would be the event of a day. So I found that if I did those four things and had that little bit of a routine that really made a big difference for me.

Jackie Baxter  13:56  
Yeah. And I guess because you were a quite active person before this, the need to be outside. I've certainly felt that I'm used to being up mountains. I'm used to be out in the middle of nowhere and being stuck indoors is it's kind of soul destroying, isn't it?

Amy Engkjer  14:09  
Oh, it really is. And yeah, that was another thing. Just getting outside among nature. It was so important to not be stuck in. I mean, so much of my life was just gone. I've told this to a few people. And I think it's worth repeating. It was the hardest thing I've ever gone through. I've lost my brother to a sudden tragic death. I lost my mother to a sudden death and combine those two, this was 10 times harder than that, which people might think real How could it be? I was facing my own mortality. And it wasn't that I always thought that I wasn't going to live through it. But I thought that I had lost the life that I knew. There were times that I didn't think I was ever going to be the same. Fortunately, I held so fast and hard to believing that I would recover. I think that is The most important thing for people to do is just know that you are going to recover, you are going to beat this, you will get through this, you will recover. And I held on to that so tightly and bolstered that in so many ways that that it won. It won.

Jackie Baxter  15:18  
Yeah, that hope is so important, isn't it? And over the long time that it goes on, it can be really hard to keep hold of that, I think,

Amy Engkjer  15:28  
Oh, well, yes. And then when you're hearing long COVID, and all these different stories of people, oh, it's been, you know, a year, it's been two years it's been. And it's just terrifying. And, you know, that's all we see in the news. For the most part, you know. Fortunately, there are folks like you sharing positive recovery stories and so grateful for that, because those are the seeds that need to be planted in people's minds to encourage that hope.

Jackie Baxter  15:57  
Yeah, the doom and gloom can be a bit almost counterproductive. Can it, I think, 

Amy Engkjer  16:02  
Oh, yes, it really can. I mean, it's it's so important to just really be aware of how that makes you feel. And I had to stop getting on some of the social media support groups. At first, they were really good. It was nice to see that there were other people going through what I was going through. So I felt that camaraderie, but then I started to notice that, oh, if I'd run across a post of somebody that was a year or two in and oh, my gosh, it would ruin my day. And I had to kind of steer away from it. I had to say, No, I'm just not. I'm not going to look at that right now. I have to stay focused on my recovery. And staying positive.

Jackie Baxter  16:45  
Yeah, it can be quite triggering sometimes seeing some other people's posts.

Amy Engkjer  16:48  
Oh, yeah. It's heartbreaking.

Jackie Baxter  16:51  
Yeah, so many people are struggling, and in so many different ways as well. It's, it is hard. Yeah.

Amy Engkjer  16:58  
Yeah. You know, I think that just slowing down. I think that was a really big one, you know, there was this urge to get back to my life and pick up the pace. And I think that that was counterproductive and needing to remind myself that, hey, I'm slowing down. And I refuse to operate at the pace that society imposes. And that's okay. And that was the only way that I was going to recover is if I respected that within myself.

Jackie Baxter  17:26  
Yeah, exactly. taking that step back. Well hopefully there's some helpful stuff for other people, if not certainly inspiring, because, you know, like you say, we will get there

Amy Engkjer  17:37  
you will, yes. Oh, you will, you will. It's there. It's there. And, you know, as you had mentioned before, every person's recovery is going to be so unique to them. It's so individualized, because there's these range of symptoms, and a variety of perspectives and approaches for healing. But my recovery was really solidified when I realized that I was in that looping pattern. And I kind of started testing the waters when I thought that was the case. 

Initially, absolutely, I needed to let myself rest, there had been some damage done from this virus, the virus had imposed this insult on my body. But after a while, I really do believe that I was in sort of a looping pattern that I needed to break that cycle. And when I realized that there was sort of this, the mind body connection that I was contributing to that for myself, it was really wonderful to realize that I could play that role for myself and not contribute to some of these sort of maladaptive tendencies that keep us in that place.

Jackie Baxter  18:46  
Yeah, definitely. So let's move on and talk about Positively COVID. So can you talk about what it is, and maybe what inspired you to set it up?

Amy Engkjer  18:57  
So early on when I had COVID, I think I mentioned that I have taught meditation for some years. And I couldn't meditate. It was beyond my capacity to even sit. And I thought, boy, you know, here, I had this deep well of calm that I could draw on, and I couldn't access it at all. And I'm seeing all this negative information online, rightfully so - it was terrifying, what was happening to the world. 

But I thought, What are other people out there doing that don't have any of these tools, especially with the mental illness stigma that is part of our world? Are they going to be able to come forward and say, not only am I sick, but I'm, I mean, I felt like I was going crazy at times. I mean, I had lost part of my memory - the word loss was insane. So I vowed at that time, man, if I get through this, or when I get through this, I will do whatever I can to help other people get through it, even if it's just one person to say, Hey, I know what you're going through. And here, let me show you what I'm doing. 

And so I decided to start a just one little web page to just throw some meditations up there that I had started writing - meditations that were born out of necessity. I mean, I would sit there and talk myself through these moments of, of anguish. And so that's how it initially started was just to be this one page with maybe a couple meditations on it. And then the longer I had COVID, and the more resources I had to draw from, the more I started to write down, and then a few people had gotten in touch with me for advice. And I realized I needed to compile this information in a way for people to understand it. And that's how positively COVID was born. 

And that was really fun, got in touch with a couple of wonderful friends that helped me pull it together. Because I was at that time, just still having a hard time getting through a day, and thinking through things. So I had some great help from friends that helped me put it together. And, and then here it is, and here's Positively COVID. And I'm hoping that it can bring people some comfort and give people some coping mechanisms, and more hope that they will recover. I truly believe that, that people will recover and that they're  not alone. And that's another really big piece to know.

Jackie Baxter  21:27  
Yeah, for sure that that comforting feeling of knowing that there are others there. Definitely, yeah. So you talked about the meditations that you've put up, and you've been collecting recovery stories as well, haven't you from people? What I was gonna say, Why is that so important? You've just said why that's so important. But what was the sort of idea behind that?

Amy Engkjer  21:47  
Because I couldn't find them. I mean, that's all I craved. I would look online for just anything to give me hope. And I would find one little piece and I would just say, okay, and I'd get off, get off my phone or the computer at that point, and just hold that. And that's a little trick I have that I want to share, I haven't put on the website. But like, when I get on Instagram, I'll look on Instagram. And if I hit a post that makes me smile, or laugh, boom, done, then I end it there. And I'll try to only get on once a day. 

So I couldn't find those recovery stories. And those were what we needed, we needed positivity, we needed hope we needed encouragement. Because if you know that it's possible, then you will, it will happen. If you don't think it's possible. And you're only being told over and over, oh my gosh, this is so terrible. And it's just going to get worse. That's what that's what's gonna happen. And I remember so clearly a doctor telling me during the sort of 10 day period when I made this big shift from being very, very sick. And she said, you know, there is more right with you than there is wrong. And hearing that, and starting to hear - I mean, that same week, I was just these recovery stories were coming in front of me. And I know that that's what made a big shift for me. So I want to put as many recovery stories on the site as I can. So people can see all these different ways that people have achieved this. 

Jackie Baxter  23:18  
Yeah. Because like you said, you know, there's not one way is there, everybody's going to find their own way. And what works for one person isn't necessarily going to work for another. So you've got to find your own kind of roadmap through it. And I think like you're saying that the recovery stories are quite hard to find. Because once people have recovered they leave the support groups, they don't want to stay there because it's so depressing.

Amy Engkjer  23:41  
Exactly. You know, I was so glad when somebody pointed that out to me early on. And I was like, no one's recovering. And they're like, no, no, no, the people that have recovered are just on with their lives. And I'm like, oh, okay, I get it. And I vowed that I would not leave the groups - I would stay and not leave anyone behind.

Jackie Baxter  24:03  
Oh totally I mean, it's probably a natural reaction, isn't it? When you're when you're done, you're like, Oh, I'm done with all of this - bye!

Amy Engkjer  24:10  
Oh, right. Oh, for sure. And I don't blame people like I've done I've - see you later COVID. Good luck to y'all and just move on. And you want your life back, you know, you want your life back. But I think that that's another important piece of the entire big picture is it's hard to suffer and it's hard to see people suffering. But, you know, compassion arises when kindness meets suffering. And if we do not expose ourselves to the suffering that other people are still in, then you know, how are we going to feel compassion and make the world a better place?

Jackie Baxter  24:47  
That's a really nice way of putting it. Have you got like a few words of advice for people that are still suffering. 

Amy Engkjer  24:54  
I think my biggest advice would be to - first find comfort in believing that you will recover. Second, slow down as much as you can. It doesn't mean you have to sit and meditate, but just be mindful of what your thoughts are doing and how they're playing into your recovery. Flood yourself with as much joy as you possibly can. My dad used to always say, elbow out the bullshit in your life, like really crowd it out. I just, I think that that is what helped me the most was, over time, the positivity and the positive thinking. And I don't mean to say that just being positive is going to make everything all better, but it is going to help, it surely is going to help. I mean, we know that positivity, hope and optimism are fundamental to healing, and they're not going to hurt. We know these perspectives have helped people heal from all kinds of illnesses and assaults on the body. And why wouldn't they help people recover from COVID. So find what brings you joy, do as much of it as you can, be as kind to yourself as possible. If there isn't anyone around you that can wrap their arms around you then wrap your arms around yourself and give yourself hugs every day. And just take it easy and and be good to yourself. 

Jackie Baxter  26:20  
Absolutely. I think there's some really good advice there. Certainly, the bringing yourself something that makes you smile thing. It's very easy when everything is awful, to not do anything that makes you happy, because you can't imagine that anything could make you happy.

Amy Engkjer  26:37  
But it is so hard. And I remember just there being times just that it would be hard to crack a smile. So I know that it's not easy. It's the hardest thing I think most of us that are going through it have ever gone through. It's terrifying and I just am so sorry for those that are still suffering and just be good to yourself and be good to your nervous system, your nervous system is freaking out and trying to protect you. Right? It's just trying to do what it's supposed to be doing by, you know, pulling your hand away from a hot fire, but just remind it, hey, I'm okay. And we're gonna get through this and it'll get the message. It'll get the message. And before you know it, it'll be like, Oh, okay, this is how it goes. This is, you know, show yourself the way, kindly, every minute. Show yourself the way to a happy, healthy body and feed your brain good stuff. And you'll be okay. 

Jackie Baxter  27:38  
Yes. And our own time. 

Amy Engkjer  27:41  
Yep. And everybody in their own time, you know, when you are ready, it will happen. You know, when your body is ready, and your mind is ready. And you've exposed yourself to enough good things. It will happen. It will. Yeah. All in good time. And it will pass, it will pass.

Jackie Baxter  28:00  
Yes. It would be lovely if COVID was a distant memory wouldn't. I think for everybody?

Amy Engkjer  28:05  
Yes. Well, and that's another thing. You know, that's another phrase I love is you know, just to kind of show your body how it feels, you know, the phrase, won't it be wonderful. Won't it be wonderful when I can run and play and dance and sing, and won't it be wonderful when COVID is a distant memory? And it will feel that way, I promise.

Jackie Baxter  28:27  
Awesome. Well, thank you so much. That's absolutely fantastic. It's been a pleasure talking to you. And I hope everyone else enjoyed it as much as I did.

Amy Engkjer  28:37  
Oh, Jackie, thank you. Thank you so much. And thank you for getting so much of the word out there, what everyone's going through and I really appreciate it.

Transcribed by https://otter.ai