32 - Esther's Recovery Story

Episode 32 of the Long Covid Podcast is a chat with Esther about her Long Covid journey and eventual recovery. I think it's important to hear that people have recovered as it gives those of us who are still suffering a bit of hope.

We talk about what helped her (and what didn't!) and although everyone's journey will be different, hopefully some of what we talk about will be helpful to you.

Of course, neither myself or Esther are medical experts so make sure you listen to your body & consult your own health practitioners as Esther's strategies may not be appropriate for everyone.

Links:
Long Covid Cured website: longcovidcured.com
Nicole Sachs podcast HERE
Dr Schubiner "Unlearn you pain" HERE

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(music - Brock Hewitt, Rule of Life)

Transcript

Welcome to the long COVID podcast with me, Jackie Baxter. I'm really excited to bring you today's episode. Please check out the podcast website, longCOVIDpodcast.com, where there's a collection of resources, as well as a link to the Facebook support group. If you're able to, please consider supporting the show using the link in the show notes. If social media is your thing, you can follow me on Facebook @LongCOVIDpodcast, or on Twitter and Instagram, both @LongCOVIDpod. I'm really keen to hear from you. If there's anyone you'd like to hear on the podcast, or if you've got any other feedback, please do get in touch through any of the social media channels, or email LongCOVIDpodcast@gmail.com. I really hope you enjoyed this episode. So here we go.

Jackie Baxter  0:00  
Hello, and welcome to this episode of the long COVID Podcast. I am really excited today to have Esther with me. And I'll let her introduce herself in a second. But we're going to talk about all sorts of things around recovering from long COVID. And what she has been doing to try to help. So welcome to the podcast.

Esther  0:22  
Thank you very, very much. It's an honor to be here.

Jackie Baxter  0:26  
I'm so happy to have you here. So would you mind introducing yourself a little bit? So who are you? And what do you do?

Esther  0:33  
Yes, of course. I'm Esther, I'm from Rotterdam in the Netherlands. I'm almost 50 years old. I got two kids, and a husband, and which is a very, very lovely husband. And we're all very happy together. So it's nice,

Jackie Baxter  0:51  
fantastic. Would you mind talking a little bit about your sort of initial illness with COVID? When did you get ill?

Esther  0:58  
Yes. Well, I got ill, in this whole COVID period, actually, right at the beginning of all of this in March 2020. And I got ill on the day that the first person in the Netherlands was discovered having COVID. And actually, he was discovered in some village that I was supposed to have visited that day. But I decided not to go because I was feeling so bad. So it started out with me just being so tired, I couldn't, you know, do anything and just this lasted for one week. And that was all - I didn't have any other symptoms, it was just feeling tired. And it just went away after a week. 

And then I had a period, I think of a couple of weeks, in which I was totally okay. And then it came back. And then I had some more symptoms, I had, I'm not even sure the symptoms in which order they appeared. But I had headaches, I had shortness of breath, I had tingling fingers, I don't even remember all the symptoms, just it just kept on adding up, you know, and then I just, I was sick for two weeks, laying in bed, you know, not being able to do anything. And I recovered again, and then got back to work and did this for, I don't know, a month, two months, and then I got sick again. And this just went on and on and on like that for the rest of the year. 

So then it was December, and I was getting sick again. And this was in the Christmas holidays. And I was just thinking, Okay, I'm really taking it easy right now, you know, I'm not working, I got a lot of time to do, you know, just rest and whatever. And I didn't recover. And I thought okay, now something is wrong here, something is going on. And I don't know what this is. But in the meantime, I had been tested. This was only in June, that they were testing in the Netherlands. So the first period in March and April, there was no testing available only when you were really, really, really sick being admitted to the hospital. 

And I actually went to this hospital at some point because I couldn't even walk for five meters without being totally out of breath. And I was just *heavy breathing* like this the whole time. And I thought this is not alright, you know, I got to get to the hospital. And they didn't admit me. They said nothing's wrong, nothing's wrong with your lungs. Nothing's wrong in your blood, your blood pressure's fine, you know, you're doing, I don't know what you're doing. But it's nothing. So just go back home. And I did go back home. And they didn't test me. 

So this was all very insecure as well. Of course, that didn't help. And I was just, you know, on my own, I was just left on my own to deal with this. And I got the sickness and then back again, and all of that. So that went on, like I said, till December. And from that period on, I just stayed on being ill. And I didn't recover anymore. The in between, so and that lasted till the second of June. I know the exact date. I'm going to celebrate it as my second birthday this year of 2021. So that's how I got sick. 

Jackie Baxter  4:20  
Yeah, that's a long time, isn't it? You know, I I've spoken to quite a few people. And I've seen people's stories and support groups and this idea of the relapsing and the ups and downs and the complete unpredictability of the symptoms and the illness and how you're going to feel. And when it goes on for that long it's scary, because you don't know what's causing it and you know, we're in the middle of a pandemic, which is worrying anyway. So it's a really horrible feeling, isn't it? Did you start to hear about the term long COVID at some point? 

Esther  5:00  
Yes, I did. I'm not sure when exactly though. But this period in December, this was a kind of a pivotal moment. Because that's when I decided, okay, I need to get some help, even if my home physician or what you call that in English - General Practitioner, I think, yeah, GP, she was not helpful at all, she was just, you know, she didn't do anything, actually. And so I got the phone number of this - this was a sort of a new institution that they made up in that and islands, and it's called C-support. And this was actually for people who do have these long term COVID complaints. So I'm not sure they called it long COVID by then already, but that's how they treated it as

Jackie Baxter  5:47  
Yeah, so they had acknowledged that people weren't recovering at least. 

Esther  5:51  
Yeah. And actually, what they told me was, yes, there is something going on, no, you're not crazy. So that was really, you know, helping me a lot, I thought at the moment, and then, at the same time, they said, but you cannot do this alone. This is really, you know, you cannot deal with this, you know, you need some professional help. It gave me the message anyway, that this was really something dangerous or something, it was so new and nobody knew how to treat it. And they didn't actually know how to treat it either. But they did say, Okay, you need to get some professional help. So that's when I started this whole course of going to the Occupational Therapist, or actually, she came to visit me because I did not have enough energy to go there. And also the physical therapist. So that started from January, in 2021. 

Jackie Baxter  6:45  
So what sort of things were they helping you with?

Esther  6:49  
Well, the occupational therapist, she mostly tried to slow me down, I should say, you know, I was just trying to do too much. And she said, You know, I was trying to work still at at that time. And she said, You need to stop working, you need to recover first, get rid of all these symptoms, and then, you know, slowly start getting back to work. So that's what I did. I stopped working, I was home the full time. And she had me fill out all these schedules, about you know, all the activities I did in a day and how much energy they cost me, or sometimes things would give me energy new. So but this actually, in hindsight, was not so helpful. But I thought that the moment it was very, I was actually just happy that someone was looking into this, and I wasn't alone anymore. So I thought, Okay, this is a professional, they know what they're doing. Okay, well, you know, I can trust in that. 

But the thing was, I didn't actually make any progress. And then she had to lower the schedule, you know, a few times where I started out, in a normal day, you know, before COVID, I might have done like 150 points a day. And now I started out with, I think, maybe 20 points a day. And then she had to lower that to 11 points a day, and then she had to lower again to six points a day, you know, and just getting the kids ready for school in the morning would be six points. And that will be, you know, all my energy for the day. So it just, I couldn't do anything at some point. And I will just, you know, sit all day, and I would just, I wanted to go outside, but every time I just called for a little walk, you know, for a 10 minute walk, I would be in bed for three days, just being so ill I couldn't do anything again. So I just I did not recover at all. I just, I think I actually got worse in that period.

Jackie Baxter  8:49  
Yeah, that's interesting. I think something that worried me was, you know, I realized that I needed to do less, because I was trying to do too much - this idea of resting is not something that I'm very good at. But I think I was also worried that if I did too little, it would be really hard to get that back and finding that balance of resting enough, but not becoming completely unable to do anything. It was really hard to find that balance for me.

Esther  9:21  
Yes. And what I later found out actually, that it the whole crucial thing was not about doing too much. The crucial thing was being afraid of doing too much. Or being afraid that I had done too much. And that was enough to just set off all symptoms.

Jackie Baxter  9:38  
Yeah, definitely. So you started doing all of this occupational therapy and stuff in January. How long did you go on with that for?

Esther  9:50  
I went on with that for I think, well the occupational therapy I think for half a year. And the physical therapist she actually stopped treating me at some point, because she said, you know, your symptoms are just so, so bad, I cannot build on anything here. If I put you on a bike for two minutes, you know, you'll be sick for three days. So there's nothing we can do at this moment. And this was of course also very scary. You know, I was just sent home thinking, Okay, well, she could not help me who else was gonna, you know, do something that's going to help me? So that really scared 

Jackie Baxter  10:26  
Yeah, it's like, almost like they gave up? 

Esther  10:28  
Yes, that's what it felt like. And actually, at the time, I was kind of relieved, because it did feel like, you know, something was being asked me all the time that I couldn't do. So I was, I was happy, I wouldn't didn't have to do that anymore. But at the same time, I was just really, really worried about how am I going to get better then, how am I going to get some progress into this?

Jackie Baxter  10:49  
Yeah. And I think, like you say, sometimes the relief is a good thing. You think, right well, I hated doing that. So now I don't have to do it anymore. But of course, the other side of that is, well, that was supposed to make me better. And if that's not gonna make me better, then what is?

Esther  11:07  
True 

Jackie Baxter  11:07  
And then you start to lose that hope. Certainly, I felt that. And that was a really horrible thing. When you feel like you don't know what to do when you haven't got any hope, then you start feeling all sorts of other things.

Esther  11:19  
Yeah. Well, actually, this this point, I think maybe is an important point to make. Because one of the things I learned - that's something that Nicole Sachs, she mentioned that she says, you know, if you have the gift of desperation, that's the moment when you start looking for other ways to get better. And actually, I think I needed to get this low to get to this point where I thought, Okay, well, regular medicine is obviously not gonna help me anymore. What am I going to do now? So yeah, this was kind of a process somehow that I needed to go through, I think, to get to where I am right now.

Jackie Baxter  11:57  
Yeah, that's a good point. Actually, you've got to get to the lowest point in order to climb out of it. 

Esther  12:03  
Yeah. Sort of, yeah. 

Jackie Baxter  12:05  
It's a bit of a trite way of putting it, but

Esther  12:08  
no, but I think yeah, you're right.

Jackie Baxter  12:11  
So you said you started to look elsewhere? And what did you find? And did it start helping?

Esther  12:18  
Oh, yes. Well, I had been reading some stuff in this period before June already. And it was about how the brain works. And how pain works in the brain. Actually, it's not the pain is not, it's not so much in your body, but it's an interpretation of the brain, about what is important about this sensation that I'm feeling or not. And I was learning some things about how this brain works. You know, it didn't really sink in, and I couldn't really, you know, get it into my system in a way to help me but um, in hindsight, I think this was also into this process that I needed to go through. 

I tried some nutritional things that helped me for a couple of days, and then the effect will be gone again. And I did try some massages and things that would help me relax. And actually, the massages were way too much for my body to handle, you know, this was be, you know, I was just so sensitive at some point, I couldn't handle anything I couldn't be touched, or, you know, the light would be too much for me, I would just sit in garden, in the shade with my sunglasses on, under a blanket because I was cold. And I was, you know, not going anywhere. 

So, and also this, this low point that I reached, was also the point that I decided, you know, where I live, there's a really, really nice park, sort of forest. Behind our house, actually, it's just, you know, I walk outside the door and I'm in the forest. So I would love to go for walks all the time. But I couldn't any more. And I thought, Okay, I need to get out somehow. So I thought, Okay, let's see if I can get a wheelchair somewhere, you know, so I can ask my neighbour friends to you know, roll me through the park. And I was this was just an unbelievable step for me because I was just before this, I was really fit and you know, working out and doing all kinds of stuff. So this was just unimaginable for me. But anyway, I thought, Okay, I have to do this. So that was actually, maybe that was the lowest point. I'm not sure. looking into that. Yes,

Jackie Baxter  14:28  
yeah. Getting outside. It does make such a difference, doesn't it? Like you I was really fit before this. I was climbing mountains and running and all sorts. And if I went outside, it made me remember all the things that I couldn't do. And then I started hating it. I didn't want to go and sit outside. I wanted to go and run but I couldn't do that. And I ended up in this kind of cycle of - I don't want to do that. I can't do any of it. So I don't want to do even a little bit sort of thing which was, again, it's part of that thing where you have to go through that in order to come out the other side, because now I enjoy being outside, even though I can't do the things that I want to do. But it gives you such a lift, doesn't it to be outside? 

Esther  15:17  
Yes

Jackie Baxter  15:17  
So, can we talk a bit about your recovery? How did you do it? Because I think that's the question we all want to know, isn't it?

Esther  15:27  
Well, the thing is, I didn't actually do all that much. The first thing, this all of this mind-body work, actually, that's what it's about. That's something you start doing, once a doctor has confirmed that there's actually no tissue damage, or no structural damage, you know, in your brain or your heart or your lungs, or whatever part of your body, you know, that could have been affected by this COVID. So that's something you know, you need to check that out first. And once you you've done that, you know, and had this kind of talk, maybe with your physician that where they say, okay, so we cannot find anything wrong with you. That's maybe when you can start working on this, on this material. 

I think that what like I said, I do remember the exact date that it happened, it just, that's what I feel like it happened. That was the second of June on 2021. And what I did was I listened to a podcast by Nicole Sachs with another fellow long COVID sufferer who had recovered, doing the work that Nicole Sachs is promoting. And what she was talking about was what they call that is TMS, I'm not sure if that is the right scientific term. But what it's what they said was, you know, there's not anything spectacularly wrong with your body, your body is doing what it's supposed to do, actually, when your brain tells you to do all these things. 

She said, You know, it's not in your head, you're not imagining anything, it's just the symptoms you have, they are real, and you're not making them up. But the thing is, there's nothing wrong with the body actually. And what you need to focus on is not so much all these small, physical or big physical symptoms that you have, but the emotions that you're holding back, or repressing or whatever. And once you let those come out and be seen and be heard, you know, even if it's only for yourself, that's enough, actually. And that's, that's telling your brain it can relax. And then you can actually your brain will tell your body everything is okay. That's sort of my explanation. 

But actually, I listened to this podcast, and it was an hour, and I thought, Oh, my God an hour, that's a really long time to listen to something. But okay, I'm not doing anything. So let's just try this. And while I was listening to the story of this other fellow patient of ours, I was just thinking, Okay, this actually makes sense. This actually does make a lot of sense. And then on the same day, I felt my symptoms just drop, you know, 80 percents. And I was just, like, amazed. And the whole thing was just acknowledging that there have been fear. And there have been anger at being just so angry. So Ill all the time and not being able to get any better. And just being worried about it all the time, and just acknowledging that I was that worried and angry and scared, and all of that, that just helped me tremendous, tremendously. And I didn't do anything actually on that day, but sit and listen to this, this new knowledge that had encountered so yeah, that's what happened. 

And then from then on, I started looking into what is this TMS and actually, what they call it now is Mind Body Syndrome. And I was looking into that and they said, you know, just stop focusing on all these physical symptoms and just try doing stuff anyway. And telling yourself and telling your brain that you can actually do this, you know, you can, okay, you can feel these feelings, you can be still scared, whatever. But you can take a little walk, you're not going to get hurt from a little walk, you know, and I think it was that day, or the next day that I went to pick up the kids from school, riding the electric bike, and I was very, very, Okay, this is going to be okay. But this was just five minutes on the e-bike, you know, very, very slowly and then all I did was pick up the kids and bring them back home. 

And this was all right, and nothing, nothing big happened. Well, actually, my body did try to or my brain - my brain actually tried to fool me again. Because now I did not have this big fatigue anymore, and I did not have this shortness of breath anymore, and I didn't have the headaches anymore. But now it gave me a terrible, terrible pain in my neck and my shoulders and it was just clenched up totally like I couldn't move. Anyway, I went. I went on doing some activities. And I was in the meantime telling myself, okay, I know, okay, brain, I know what you're doing now you're trying to protect me. Because you're thinking that you know, these emotions or this fear that I have of moving again and you know, maybe getting sick again, all this stuff that's going on in my mind, or do you have to protect me against that by giving me this terrible pain, so I will just stay in my chair and do nothing. 

And I thought, okay, I know what's going on. Now, I'm not gonna listen to this, I'm just gonna do what I'm gonna do, you know, not too much, but went and do some stuff. And this actually went okay. And the pain in my shoulders went away after two days. And that was it, basically. And then the rest of the symptoms, the rest of the 20%, it just faded out more gradually, in the period of, I think, a couple of months after that. But the reduction on that first day, you know, what I call 80% was just such a huge, you know, sort of revelation to me, that it was just - that was enough, actually, I considered myself cured on that day, because that was just such a big difference. 

Jackie Baxter  21:15  
yeah, this idea that your symptoms are real, you are definitely feeling them. I mean, I think people get a bit upset. I mean, completely, understandably, if they think people are telling them that their symptoms are in their heads. But I think that's not what you're trying to say here, is it?

Esther  21:34  
Yeah, yeah. And it's just one of the people that I've been reading a lot from and also doing this program that he has, that I found was really valuable, is Dr. Schubener. Well, I can tell you later on about where to find that. He also has this really good explanation of how this works, actually. And this is your your brain and your nervous system creates neural pathways, he calls it, that are our reaction to stress or to stress and emotions can create the neural pathways that can cause chronic and often severe physical reactions. And he also says, that childhood hurts can lead to an oversensitive nervous system - that can actually, you know, fire up again, whenever there's a new stressor coming up, that you're trying to repress, I guess, you know, trying not to deal with in the face of it. But that creates, actually, these physical symptoms, because I cannot explain it the way he does, if you want to know how this actually works. This is just brain science. 

And he also gives these these, you know, simple explanations as well, you know, when you're feeling shy, or you're feeling self conscious about something, you start to blush, you know, this is an emotion, giving a physical reaction. And that's actually, you know, when we think about it this way, or when you're sad, you know, there's there's water coming into your  eyes, that's a physical reaction. And when we think of it this way, we think, oh, yeah, yeah, of course, that's how it works. You know, we know, we know, this works like this. But when it comes to chronic pain, or chronic fatigue, or chronic symptoms, or whatever, we find it hard to believe that it actually works the same way. 

And these are actually emotions, and also the Journal Speak that I did for a couple of months, that's the method that Nicole Sachs is using, that is just a way you know, of letting out all these emotions and not letting anybody read it or whatever, just, you know, for yourself, just type type type type, I'm angry, I'm stil ill, I'm just, you know, throwing it all out. And that just gives just such a relief to the brain, you know, the brain can then finally think, okay, I can actually feel these emotions, without anything going wrong, you know, we're not dying, we're not, we're not actually in any physical danger or whatever, I could just, you know, let go, I can just relent, and then, you know, defeat these physical symptoms. 

And I actually, I know this now, because sometimes it's still gets, it still gets to me, you know, sometimes. And then these, there are moments that I forget, I have to pay attention to these emotions. And like, for instance, one day, I don't know when September or whatever, I got this terrible headache. And I was thinking, Where does where does this headache come from? Again, you know, because I had had this as part of the Long COVID for so many months, and then it was just gone. And now it was here again, and I thought what's going on? And when I was thinking about this, actually, what was going on was we had sent the kids to school on their bikes alone for the first time. And where we usually go with them and you know, be there at all the crossings and say, Okay, please be here. Stop now. There's a car coming and all that and they would have to do that themselves. Of course. And that just, you know, really scared me as a mother. 

And at the same time, I did not allow myself to feel that because I thought, okay, you know, this is the thing they they're gonna have to do at some point and all the other kids are doing it and all the other mothers probably, or whatever they don't, they don't have a problem with it. So I cannot have a problem with this, you know, I have to be okay with this. And this just, you know, this gave me such a headache, because it just No, I could not reconcile the two. And once I noticed this, and once I thought about what was going on, you know, it just subsides, the headache will be just gone in five minutes. 

And that's actually how it works. And I found out how this works. Now even, I even do it in my sleep. I do it in my dreams, you know, when I go to bed, you know, having some of these symptoms, and I think, okay, I'll deal with that the next morning, you know, now I'm gonna go to sleep. I'm not going to okay, this is probably emotions again, but I don't want to go there, you know, not now, I just want to sleep. So but then in my sleep in my dream, I'm actually processing this still. And I'm thinking in my sleep, you know, where can I go? Where are all these emotions, what's going on, and then I just resolved them in my dream. And then in the dream, I just start to relax, and be okay again, and I wake up being Okay, the next morning. 

So this is just, you know, I've practiced all these, these exercises that Schubener has and Nicole Sachs has, and there's lots and lots of more, you know, resources that you can use. But I've practiced this a lot. And this is actually kind of ingrained into my system now. So now I know what to do whenever something comes up again. And actually, what I've learned is this was not just the long COVID. When I look back on my life, it's been like that for 30 years, I think, you know, I had migraines, I had pain in my knees, I have pain in my back, I had this recurring fatigue. Also, I had that for years and years, you know, I'd be in bed for a week, every two months. And this has been going on for 10 years. So this is just, you know, it's the same thing going on. So I'm just really, really happy that I learned how this works, you know, and how this and I think this can, you know, really, really help others as well. Just knowing about this. 

Jackie Baxter  27:22  
Yeah, definitely. And you've kind of developed those coping strategies, and you know how to deal with it now. So when it does pop up because of something that happens in your life now, you know how to deal with it now? Which is awesome. 

Esther  27:38  
Yeah, it is. Yeah, 

Jackie Baxter  27:40  
those things that you've just mentioned, Nicole and the doctor Schubener, I'll make sure that I put links to them in the show notes. So if anybody listening to this wants to check them out, they can look at those links, because that sounds like that's made a huge difference for you. 

But I mean, I've noticed myself. And I've definitely noticed people talk about it in support groups and things, that since COVID, they've been having really weird dreams. And I've noticed this as well. And it was a really big thing when I spoke to my counselor maybe a few weeks ago, and and she asked me if I was dreaming. And I said, Oh, well, yes. Thinking that I was going to explain all of these really strange dreams to her, and that she was going to think I was crazy. And what she said was, well, it's your body trying to process stuff. And when I realized that, that made quite a big difference because she explained some of my dreams. And she said, Well, it's this feeling or it's that feeling and you know,  it's your body telling you how you feel. And it was and realizing that, that definitely helped. And I am definitely not there yet. But I just I feel like each little thing, it's a piece of the puzzle. And we are putting together a puzzle of all of these things. And hopefully, eventually, I'm going to have a light bulb moment like you did where I go - Yay!

Esther  29:05  
Yeah, well, yeah, well, that's just different, you know, for people sometimes it's like, a moment and sometimes it's just, you know, a more gradual process. And both are fine, you know?

Jackie Baxter  29:14  
Yeah, it is really interesting, though. I mean, it's certainly a very British thing to repress emotions. You know, you're not you don't show emotions, you know, you're not allowed to do that because that's not how we do things. And I don't know if that's part of it?

Esther  29:32  
Yes, I think actually in the Netherlands it's the same.. Well, or maybe for me, it was the same anyway. You know, just not not make too much noise not be too, I don't know extroverted or whatever, just you know, be quiet be be good girl, you know, all of that. I mean, I sometimes just feel like you know, not being the good girl, and I'm just gonna feel like *arghh* yeah, well, you can be frustrated about you know, little things or just, you know, or bigger things like the Covid pandemic, you know, that's a big thing.

Jackie Baxter  30:02  
Exactly. Yeah, there's so much going on in the world that triggers emotions. And, and I think that's fine. But we need to know how to deal with it. Like you say, that's where we're not very good at it. 

Esther  30:17  
Yeah. 

Jackie Baxter  30:17  
But that's really, really useful. And I'm so happy that you're recovered. That's awesome.

Esther  30:22  
Thank you. And I'm really happy you're on the way too - I'm sure you'll be fine.

Jackie Baxter  30:27  
Yeah, I think for a long time, I just didn't know what to do. And I feel like at last that I do, and it's taking more time than I want it to, which is leading to more frustration. And I know, that's not necessarily helpful. But I finally do feel like I'm getting there. So I think those stories of people who have recovered are really important. So maybe that leads us on to the next part, because you've set up a blog with recovery stories, is that right?

Esther  31:03  
Yes, I did. Well, well, I'm not actually the one who set it up. I don't know how I came across this, but I've found it on the internet. And I thought this, the title of the website is longCOVIDcured.com. And I thought this was just a brilliant, you know, title, all of that. And I just Okay, so I looked into that. And I found this was actually, it was a blog already. But it had only I think, at that time, only one person's story on it. And then a whole bunch of information that and resources that you can use to get better. And I thought this is great, you know, this just has everything you know, that you need. So and it has resources for people with different personalities, you know, in what works for you can be different for me, and, you know, there's different methods that you can use. 

But actually, this website at that point was not very accessible. You know, it had just one page, and then it had all the information just on one page, and it was not clickable at all. And I thought, okay, if this is such a brilliant title of the website, we need to get this better presented. So I offered my help to try to do that. But the thing is, I'm not a web designer myself. So I was just, I didn't know what I was getting into at all. And I thought, okay, maybe I can do better. So that's what I tried. And then I started looking around a little bit of for people who had recovered as well, you know, using these similar methods to get more stories onto this website. 

And like you say, I think it's very important that people can read, you know, people with different perspectives, just telling their own stories, not telling the medical story necessarily behind it, but just you know, the process they went through and what they learned and how they did it. So people can can learn from it and can see, you know, there is hope, and there is ways to recover. And there's people who've done this. So that's, that's what I've been trying to do. And the thing is, I am, like I said, a working mom, so I don't have so much time to actually do this. And so the website still needs a lot of work. It's not the professional website that I would like it to be, but it's getting better. 

And so it has these stories of people, and it has a lot of resources that you can use, you know, it has just all these links to other websites and professionals who've been working in this field for you know, I don't know how long and who are great experts on this issue. And they can, you know, really explain the science behind it, which I cannot, you know, I'm a lay person, I'm just telling my story. But there's people who can really explain how this works in your brain. And that just is really helpful. I think just knowing how this works and knowing you're not crazy, you're not making this up, this is just how the brain and the body work.

Jackie Baxter  33:55  
Oh, that's brilliant. Because I think yeah, I mean, certainly I was saying earlier, I like answers. I like to know what's happening, and I want to know why it's happening. Because that kind of helps me to process things - once I understand it, then I can start to kind of work through things. And I don't know if other people are the same, I'm sure some people are, but like you say it's really useful to kind of understand what's going on because once you're aware of something, then you're able to work on it or to do what you need to do once once you get it, I think

Esther  34:28  
Exactly and also, you know, I just has a lot of practical exercises that you can just do, you know, and they've been scientifically reviewed, you know, so this is just it's not something they just made up, you know, this is actually - it has a scientific basis to it. So, and it just really helped me you know, also doing all these writing exercises and also, you know, processing what's behind it for me anyway, so that's been really good.

Jackie Baxter  34:55  
Yeah, amazing. So I will make sure that the link to the website, as well as all the other things that you've mentioned, are in the show notes. So yeah, go and check them out, because they've obviously made a huge difference to you. So hopefully, they'll help other people as well. So yeah, that's amazing.

Esther  35:13  
And what I also would like to add, because what was part of why I got sick, and why I did not want to process all of this, you know, initially is because I can be a little strict with myself or a little severe, you know, this is what you have to do. This is what you, you know, you have to be like everybody else, and everybody, everybody else apparently can do all this. So why can I not do this. So just, I can be a little strict for myself. And so in case any of the people listening to this are also like that, you know, there's also a big part of recovery is also you know, being compassionate with yourself and being kind to yourself and not blaming yourself for what happened, or being strict or severe, you know, saying, you know, you should have known all this, or you shouldn't have done it this way. And, you know, just let it happen and be not what, like I said, kind to yourself. And there's also some exercises, for instance, by Kristin Neff, that's also on the website, you know, where you can do these meditations and just, you know, learn to be compassionate with yourself. And that's also a big help, I think.

Jackie Baxter  36:20  
I feel like this whole pandemic is, we've forgotten about being kind to each other and kind to ourselves, because we're all so wrapped up in how awful things are. So I think that's  really important as well.

Esther  36:34  
Like I said, I'm not a web designer. So I've tried to do my best on this website. But if anybody's out there listening, being a web designer who could maybe help on this project, I'd be very grateful, because this is just, you know, a volunteer project of of me personally at the moment, and I, well, I could maybe use some backup with that. So if there's anybody who would like to help, you know, they can just leave a comment on the website, there's this form that you can fill in. It's actually for submitting your story, you know, long COVID recovery story. But actually, if you want to leave another message, it also reaches me, so that's fine. And then the other thing is, there's something that's called Search Engine Optimization. And I really don't know what this is, but it helps generate traffic to the website. So if there's anybody who can help with that, I'd be very happy. 

Jackie Baxter  37:30  
Yeah, definitely. Hopefully there will be there's bound to be someone with IT skills.

Esther  37:34  
Well, we'll see. Yes 

Jackie Baxter  37:36  
hopefully, somebody can help you out. Yeah, thank you so much for chatting with me today. It's been really, really interesting and helpful as well. So thank you so much for your time.

Esther  37:48  
Thank you for having me for giving me this opportunity to share, so hopefully it will help you know a lot of people. I really hope that.

Jackie Baxter 
Thank you so much to all of my guests, and to you for listening. I hope you've enjoyed it, or at least found it useful. The long COVID podcast is entirely self produced and self funded. I'm doing all of this myself. If you're able to please go to buymeacoffee.com/longCOVIDpod to help me cover the costs of hosting the podcast. Please look out for the next episode of the long COVID podcast - it's available on all the usual podcast hosting things and do get in touch - I'd love to hear from you.

Transcribed by https://otter.ai