109 - Julie Black - Long Covid recovery

Episode 109 of the Long Covid podcast is a chat with Julie Black about her recovery from Long Covid. We speak through her illness, what she found that helped as well as other observations she has.

As with all recovery stories - this is just one person's experience. No two recovery stories are likely to be carbon copies of each other.

**transcript now updated - if it's not showing for you, you may need to refresh or re-download**

Rachel Witfields recovery blog and resources

Recovery Norway recovery stories

Suzy Bolt recovery yoga and recovery stories

Article which explains very clearly the role of the brain in physical illnesses. 

Curable app

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello, and welcome to this episode of the long COVID podcast, I am delighted to welcome my guest today, Julie Black, who is here to chat about recovery. Hurray. So without further ado, a very warm welcome to the podcast.

Julie Black  
Thank you very much, very delighted to be here.

Jackie Baxter  
I'm so excited to dive into this, I love doing recovery stories. As with any recovery story, this is just one person's experience. I hope it will be helpful to you in your own recovery, but no two recovery stories are likely to be carbon copies of each other.

So to start with, would you maybe just say a little bit about yourself, and maybe what your life was like before you got ill? 

Julie Black  
Yeah, so I thought it might actually be useful to divide that up into my kind of life in general, before I got ill, but then also just a few months leading up to getting COVID. Because I, on reflection, think that they were actually quite important. And, you know, part of my illness really. 

So I have quite a satisfying but cognitively demanding job, I guess, is the best way to put it. So it's a kind of science and advisory role, in quite a busy sort of area, often feel like we're slightly kind of under resourced, just in terms of staff time, and all the demands that are coming to offer very supportive work environment and a great team that I work with. And I never really worked excessive hours. And that was not expected. But equally the kind of hours that I was working felt very intense, quite a lot of the time. And you know, that kind of ebbed and flowed. 

But especially in the last sort of year or two before getting ill there was definitely, most of the time felt quite intense. And most of the time felt like I was constantly trying to juggle lots of different things that were going on. And before I got ill, I remember thinking to myself, this is getting out of hand, this isn't sustainable, something's going to have to give a bit, just not being quite clear if I should expect things to naturally ease off soon. Or if I should try and be a bit more proactive, or you know what was going to happen. But I do remember how we use thought. 

So yeah, I really enjoyed my job. But it was also very full on, I always made a real effort not to work excessive hours, and to have plenty of time to myself. But then that time was kind of busy doing other stuff as well. So I have a horse, which is something that I get a huge amount of joy out of. And this might sound a bit sad, but I always see my horse as kind of my best friend and I spend so much time with them. 

And we do endurance riding, which is kind of competitive long distance riding, is the best way to put it, all over the countryside in Scotland. But we both need to be quite fit for that. So a lot of time is spent training the horse, keeping myself fit, as well as just the sort of peer side of it, looking after the horse, looking after the field. And I did quite a lot of yoga, which is something I've done for years. But I kind of saw that as more about fitness. And I now realize it's about so much more than that. 

And then on top of that kind of home life - got a very supportive partner. And it became apparent while I was ill quite how brilliant and supportive he was, not that I should have been surprised. But you know, having not had to really put that to the test before. And we don't have kids. So I think that helps in situations like this. But we do have a massive garden that we both love. And we both put quite a lot of kind of care into. But equally, it's just one of these things where the list of things needing done never ends. And it that feeling of never been on top of it is quite stressful on its own. And yeah, I think that's just something you have to learn to live with. Really. 

I don't know if it was just for months, or potentially years, but I just have this kind of memory of feeling tired quite a lot of the time. But without really always knowing why. And it was probably a combination of work, and just, you know, all the horse riding and fitness stuff that I was doing and just not having enough of the downtime in my life in general. Also, you know, I'm in my 40s. I'm pretty sure I've been Peri menopausal for a while. Probably just put it down to that without giving it too much thought at the time. But that was there, never really addressed it. Probably a multitude of things causing it. But yeah, that was kind of generally how my life was like. 

And then kind of getting closer to when I got ill. Yeah, like I already said work was particularly busy. And I remember thinking that that wasn't sustainable, but at the time, I hadn't done anything about it. On top of that, I was organizing an endurance ride for the endurance riding club close to me. And so that took up a lot of time, both on the admin side and so sitting at home on my computer for hours every evening trying to do all the paperwork and producing maps and all the rest of it. As well as the going out on my bike exploring the area, working out the route, checking different tracks, checking they were still suitable for horses, having to change it because I landowner it, you know, wanted me to make some changes. 

And on top of that, trying to keep me and my horse fit because we wanted to do our own ride. And as part of that we did a ride where - this was probably about a month or so before I got ill - at the end of it and I thought I'd let him into this kind of pond that oh, I'll let him go and have a splash around. Turned out, it was very soft. Basically, he got stuck in a bog to the point that we had to call Rescue Services, we had a whole fire crew come, massive rescue operation, I didn't think he was going to make it. It was absolutely terrifying at the time, I was basically just trying to keep him alive until they could get him out. 

And it got to the point that I was pretty sure that the vets that came out as part of the rescue operation as well, were about to tell me, it's probably time to just put him to sleep, it was kind of almost at that point. I was really obviously just trying to keep it together for him at that point. But clearly not in a good way and very upset. He did get out, he's absolutely fine now. But I had quite a lot of just kind of, you know, trauma I suppose to deal with from that. And I kind of felt like it was my fault, because you know, I'd taken him in and not being paid enough attention. And this is what had happened. 

He recovered within about a week and was totally fine. And I don't think he's got any long lasting kind of mental issues as a result of that. But because I had so much other stuff going on at the time, I didn't really have the time to just sit with that and process it and deal with it. So that was all still there. And I would wake up at night, sometimes with just kind of, you know, being back in that situation. And that was still happening. 

And so a few days after my partner and I's best friends were getting married, which is great. And we were over the moon to be part of it. But we were quite involved in helping out with that. So that was a lot of other stuff that was going on. And then I had to try and kind of juggle that on the day with also just helping my horse recover. And he was on medication for a week and all sorts of stuff with that. 

And then my partner got ill about a week before I did. And he was very ill he recovered fine, but was very ill at the time. So trying to look after him, do all the other stuff going on, stay separate from him and sleep in a different room. Trying not to get ill. So yeah, just the sort of month or two before getting ill were just super full on, super crazy, just did not have a minute to sit down and think for myself at all.

Jackie Baxter  
Yeah, I mean, it's hindsight, isn't it? You know, at the time, we do what we have to do. Because what else could you have done in that situation? You know, you couldn't have not looked after your horse, you couldn't have not looked after your partner. But I guess you know, the fact that they all came at the same time, you know that the timing maybe wasn't great. I have a sort of relatable kind of lead up to my illness, or I'm thinking looking back on it. What was I doing to myself, you know, I was doing all of these things. And I was so stressed and I wasn't sleeping, and I was constantly sick anyway. And you know, I was always tired. 

And at the time, it was just normal. This was just me, this was what I did. The thought of not doing things was not something that had ever entered my mind. You know, the word no was not in my vocabulary. There's not really any point in looking back and blaming myself, because what is the point of that? But at the same time, I can now look back on that and go, Okay, well, there was a bit of a perfect storm for when I then got sick on top of that. 

So it would be useful to just talk through maybe your sort of initial illness if you're happy to do that. So like maybe - your partner obviously was already ill, I assume you caught it from him? 

Julie Black  
I'm pretty sure I did. Yeah, 

Jackie Baxter  
yeah. And when abouts was it? 

Julie Black  
So about just over a year ago. So last July, I think it was the first of July was when I kind of tested positive, which was about a day or so after I started to feel pretty groggy.

Jackie Baxter  
And you said that your partner had quite a severe illness but then ended up with not having long COVID. How did your initial kind of illness compare to his? and then obviously you did get long COVID afterwards - because this is really interesting, isn't it? You know, it's not always the more severe cases that end up being longest, if that's even the right word. 

Julie Black  
Yeah, I mean, I was pretty ill at first as well, probably just as ill as him. So neither of us ended up in hospital but I think we would both describe it as by far the worst flu type thing we have ever ever had. For me anyway, I could barely make it to the bathroom at times during my illness, just felt so horrendous. I was breathless at times even just you know during the acute phase just sat on the sofa doing nothing, with this kind of short shallow almost hyperventilating type breath. And tried to phone 111 and there was just you know, hours and hours waiting time. 

But managed to for my GP and speak to them and actually one of the nurses there had recently recovered but she'd had it pretty bad as well. So she spoke to me and she was very reassuring but basically just kind of you know, asked all the questions and say that sounds very similar to what I had. It's not that unusual. There's nothing we can do to help, you just have to sit and ride it out, you know. If this happens, or this happens, that's when to call 999. But apart from that, you just have to sit there, let it do its thing, you should start to feel better and about 10 days. And I'm really sorry, there's nothing else I can do for you. 

And so that's what I did. And I kind of sat it out. And, you know, the timing was pretty much exactly as she predicted. She said, there'll be a little dip after three or four days. So you're think you're starting to get better, but then you won't be, it'll get worse again. But then after 10 days, it really is starting to turn around. And that's exactly what happened. So after around about 10 days, I certainly felt like I was, you know, improving considerably compared to what I had been like, but far from 100, per cent. 

And but you know, at the time, I just thought, yeah, just give it time, don't push it too much, you know, yeah, I'll get better. It's starting now. But after maybe a week or two, after that sort of point of thinking it was starting to improve, it just become so up and down. You know, I'd try and cook dinner, and then just barely be able to lift my fork when I was trying to eat it, you know, back to bed kind of thing. And so it was clear that yeah, I wasn't recovering quite in the way that I would expect to, pretty early on, actually.

Jackie Baxter  
And this, I mean, this is really interesting to me, because I was a March 2020. So there, certainly within COVID, there wasn't any kind of pre existing, this has already been happening to people kind of thing. Whereas a year ago, you must have been aware of the fact that there were people who were not recovering, who had been ill for several years. And at what point did you put sort of two and two together and go, Oh, is this long COVID?

Julie Black  
Yeah, pretty early on. And I kind of, looking back, I wonder if I almost did that too quickly, because I kind of gave myself the fear. You know, as soon as I realized I wasn't recovering linearly, I suppose. I kind of felt, well I must be developing long COVID. And I am going to be sick for years because this is what's happened to other people. And that must be what's happening to me. And obviously, it was far too early for me to know that, you know, and yes, I did end up having what was definitely long COVID and being very ill for months, but there was no way I could have known that at that point. And I think I was definitely catastrophizing. 

But that is what I thought and I guess probably is relevant, I suppose, a relation of mine has had ME for about 20 years. And she lives a fairly good life now, but I don't think she'd ever say she fully recovered. And you know, when she first got it 20 years ago, she was very ill for several years. And I know that there is a genetic element to that, that just kind of predisposes you. It doesn't guarantee it, obviously, but there is a genetic predisposition. 

So I think with that in my mind, and just, you know, having read everything in the media, and obviously, you know, being very aware that long COVID was a thing that was affecting quite a lot of people, I just convinced myself from the beginning that that is what I had, and that I was going to be very ill for many years and may never fully recover. And from the beginning, that was what I had told myself.

Jackie Baxter  
Yes, I guess it was a different experience to what I had. Because although you know, as you just mentioned, ME has been around for a long time. Certainly to start with no one was really talking about that. It was basically, if you get COVID, you'll be ill for like a week, and then you'll be fine - unless you fit it into, you know, a couple of specific cohorts of people with pre-existing health conditions, for example. So basically, for me, it was like, I have COVID, I'm not really that concerned. That didn't work out so well. 

So are you able to just talk through your sort of main symptoms with your long COVID?

Julie Black  
Yeah, so in advance of this, I thought I better write down a list of my symptoms, because otherwise I'll forget them all. And I've got over 20 on the list. So fatigue is one that most people talk about, which I definitely had that early on. And you know, there would be points where yeah, like I said, I could literally barely lift my hand up from the table. It was like trying to move through concrete, and would go to bed and just physically could not move, could barely lift my head off the pillow. 

But that I did have that a few times sort of early on. But that didn't really persist. So you know, within a month or two that just wasn't something I was getting anymore. And I feel like the long COVID had sort of settled a bit more by vein into what it was going to be like for me. 

So at that point, the main symptoms were complete insomnia. So once that started a few weeks after having first got ill, I literally did not get a wink of sleep for several weeks. Not a single, not even an hour. And I felt like I was going crazy at that point. I mean, that was just, you know, it's so difficult to describe. I've had bouts of insomnia all my life, but it's been pretty minor and I very rarely wouldn't get any sleep in a night. But, you know, once or twice a month I might have a night where I get two or three hours and then wake up and can't get back to sleep. 

But this was completely different. And it just, I mean, I was hallucinating, you know, the effect having absolutely no sleep has on you is so difficult to describe. But at the same time I was getting waves and waves of adrenaline that I could feel them just, you know, kind of coursing through my body, which is probably why I couldn't sleep at all. 

And eventually, I did manage to start getting snatches of sleep. And that did make me feel better. But it was just, you know, an hour a night or something to start with. And only very gradually over months did that build up. But even just getting that little bit just did help a lot. 

I'd get breathless doing virtually nothing. I mean, sometimes even just sitting up in bed so I could eat would make me breathless. And that was pretty scary. To get lightheaded on standing, and sometimes just making it to the bathroom would make me feel like I was going to pass out. So I actually for about a month or so at the worst of it, I had a potty in the bedroom. So is that I didn't have to go to the bathroom more than once a day, just for solids. This sounds you know, really embarrassing to talk about. But that's how bad it was. 

And yeah, my heart rate, I wouldn't say it was going crazy. But there was a clear pattern to if I was lying down and not really doing anything, I'd feel it pounding. And I could hear it even just lying down. But it wasn't going particularly fast. But as soon as I got upright, and again, even just trying to crawl slowly to the bathroom, it would just go crazy. 

I had histamine intolerance. And I actually feel like I could have been even worse, as ill as I was, I got a bit of really useful advice from somebody on a Facebook group around histamine in foods. And so I thought I'd give that a go. And it made such a huge difference. Because I had this fizzy feeling all around my body, which is really hard to describe. But it was almost like there was poison. And I could feel it traveling through my blood vessels almost. And also in my head. And that was making me just, don't think this is brain fog. It doesn't seem like quite the right term. 

But I just couldn't, didn't understand what was going on around me, I could barely hold even the simplest of conversations, probably couldn't even remember my name at some point, if you'd asked me. Just felt so out of space and time almost, just not able to comprehend where I was, what I was doing, what was happening around me. That all stopped as soon as I stopped eating histamine. So I think that made a huge difference at that point. It didn't really deal with any of the other symptoms at all. But just having that one thing that just leaves such a huge difference. And I kind of think I could have ended up much worse had it not been given that advice fairly early on. 

So yeah, that's probably the kind of the scariest ones and then lots of other stuff that didn't really scare me in the same way, but just you know, were pretty unpleasant at the time, and just was kind of part of the bigger picture of feeling ill and feeling terrible. I did get some panic attacks, like full on panic attacks, which I'd never had in my life before, for a while almost daily, but then they gradually kind of petered out.

Jackie Baxter  
You know, it's it seems to be, you know, a theme that people have their main symptoms or their most kind of worrying ones. And then you know, there are all sorts of other ones that will kind of like, pop up at sort of inopportune moments. That was definitely my experience, but it's yeah, it's a pretty horrifying list, isn't it, really? I mean, I think, you know, everyone's experience is different. And actually, it's very interesting that fatigue, once the initial kind of stages were over, actually wasn't so much of an issue for you, because I think that's quite unusual. 

So I would love to kind of talk about, what did you find that helped? Or what did you find that didn't help? Because for me, I found all the things that didn't help first. You mentioned the kind of histamine food reduction was very helpful. But what else did you find?

Julie Black  
So I guess the first thing that I did was try every food supplement under the sun, spent a whole lot of money and make sure that we're the best quality ones. Because otherwise what was important, you know, blah, blah, blah. And yeah, there was no obvious benefit from any of them. I mean, I can't hand on my heart say they didn't make any difference. But there was definitely none, where I felt Oh, actually, as soon as I started taking that I noticed an improvement. That didn't happen at all. 

And the other thing was just following all the Facebook pages about being ill and Long COVID and a couple of ME ones as well, because, you know, I'd kind of already made that connection in my head, which was kind of a double edged sword. So eventually, I found the group, which did actually really help me do the things which helped and recover. But apart from that one group, I would say the rest of them did more harm than good. They just put the fear into me. And quite a lot of them, they're kind of main focus and the main kind of messes that they're trying to get across is that you will never recover. You just need to learn how to manage this. Don't try and get better because that will just make you worse. 

And so at the beginning that you know I took that to heart and so I really was resting a lot. And potentially the reason that the fatigue didn't persist was because I wasn't doing anything to bring it on. You know, everything else was going crazy as it was. And I mean, I got so lightheaded that I probably couldn't have really done anything before passing out anyway, I suppose. 

But yeah, I just was rest rest resting and had this in my head, because I've had the fear of God put into me by all these pages. And I felt so terrible anyway, even though I wasn't doing anything, that I just just did absolutely the minimum. I mean, at one point, I literally was bedridden, because I couldn't make it to the bathroom without passing out, you know. So I think that's the the two things that definitely did not help at all, which I focused on at the beginning.

Jackie Baxter  
Yeah, I have a sort of mixed kind of feelings about support groups, because I think they can be incredibly valuable in making you feel validated and making you feel not alone. You know, some of the kinds of, you know, things that people were suggesting,  like not pushing through, for example, were actually things that I did learn from the support groups. 

But as you very rightly say, the kind of flipside of that is if you're in like, you know, 15 different support groups that's all you see, you know, there's a lot of very negative stuff in there. And, again, quite rightly, people need space to put that, I think I like you had a very supportive partner. So you know, I was probably doing a lot of my moaning to him. So I didn't need to put it in the support group so much. But the problem is, if you're constantly seeing that, you're getting kind of bummed out by it as well. 

So I think, yeah, for me, it was finding a balance between diving in there to get the useful stuff, but also not spending too much time in there. And it wasn't something that I was very good at doing to start with. Because I think you want to know things, don't you? Certainly I did. It was like, Well, this is kind of a source of information, which it was in a lot of ways. But I guess trying to do that in a kind of healthy way. Maybe. And that's hard.

Julie Black  
Yeah. And I think I had convinced myself that if I did enough research, I'd find the silver bullet, and, you know, obviously that doesn't exist. But yeah, I kind of just thought, oh, you know, there must be something and I'm going to find it. And yeah, and I guess, although I was trying to rest because, and that probably was the right thing to do in the early stages, I think that is really important anyway. 

But because my mind was constantly whizzing around with, you know, what might be the silver bullet, trying to find it, but also just all the depressing things that I was taking on board about how I'm never going to recover. And, you know, I was planning my life as a disabled person. And I was thinking about, well, you know, do I have to sell my horse? Or do I just learn to do enjoy other things with him that I can do from a wheelchair, and, you know, all this stuff was just constantly going around in my head. So I wasn't actually resting at all, even though I was lying in bed, not physically doing anything. 

And I got so depressed at one point, which, you know, I don't think that was a symptom as such, I think that was just something that I kind of, I just got so depressed that I actually felt, you know, I had suicidal thoughts, which, looking back now, this was quite early on. And you know, people have been dealing with this for years. And I'm sure they've had those thoughts. But yeah, it was. It's just quite scary how quickly they came on for me anyway.

Jackie Baxter  
Yeah, I think, again, this is one of my kind of soapboxes. So I won't get on it too much. But I think the mental health side of this can be quite underestimated. And I think it's because people are worried about talking about mental health, because they're going to be labeled as Oh, it's just anxiety. So I think there are a lot of people that have had the kind of, if this is my life, I don't know if I want to be here kind of thoughts. 

And I don't think this is talked about enough. Because, you know, that is a dark place to be. And I think there needs to be more kind of recognition of that and more discussion of it in a kind of, you know, sensitive way. But in a way that won't get people labeled as Oh, it's just depression. Oh, it's just anxiety. Oh, I told you so, kind of thing. You know, it's not that your depression has led to your Long COVID. It's that you have long COVID. So you're depressed.

Julie Black  
And that is depressing!

Jackie Baxter  
 So, so yeah, right. Let's get on to what did help?

Julie Black  
Yeah. I think at the beginning, just having rest and removing stressors. I think that was important. And I think it allowed the illness to just kind of run its course without me necessarily making it even worse than it would have been. Yeah, it gave my body the space, I guess, to just sort of be ill. 

And eventually, after this initial period of just kind of constantly worrying around in my head how I was never going to recover. But eventually once that mindset had shifted, the continued rest and kind of learning how to rest mentally. I think that was really important. Kind of even going all the way through recovery. And actually now it's part of my life. That's a skill that I'm trying to keep. But yeah, so definitely rest and removing stressors at the beginning, I think For me, anyway was key. 

And I'd like to point out that I am aware of how lucky I am, in being able to do that completely, partly because I had a very supportive partner. But also my work were fantastic and didn't in any way try to pressure me to go back before I was ready. You know, we've got a good sick pay, and also I actually have an income protection policy, which, in the end, I didn't really need to use that for very long, because between sick pay, and then recovering, there was only a small gap, but actually just knowing it was there, it gave me a lot of peace of mind. So that was just one less thing to worry about, while I was being very ill at the beginning. So yeah, I'm aware that not everybody necessarily is able to rest and remove stressors quite as much as I was. But if you can, I think that was really important. 

Jackie Baxter  
Yeah, yeah, I think, you know, it's, we do the best we can, don't we, you know, we remove the stresses that you can. And the ones that you can't - Well, as we said earlier, there's no point beating ourselves up about what we can't do.

Julie Black  
And so another thing that I think helped me quite early on, although not for the reasons that I would have wanted it to, I suppose. But I managed to get an appointment with a doctor who is not my GP. But he did have quite a good understanding of long COVID and took it very seriously, and had a fantastic bedside manner. And so just said all the right things, asked all the right questions, explained things to me in a way that even though I thought I knew it all because I've been following Facebook groups, and I already knew way more than my GP did, for example. So even though I thought that, he just explained it in a way that actually kind of made me understand it differently. 

And there was a few things he said that I kind of held on to you and actually helped me later on in my recovery. But mostly just feeling like I was heard, you know, feeling like this was being taken seriously. And even though he doesn't have the cure, he's going to do whatever he can to help me. And he made sure I got all the right tests and all the right scans. And just that process was huge. And I think having had all the right scans to show that actually, there was nothing visible on my lungs, or, you know, coming up in all the different blood tests that he did, that actually became quite important later on, because then I was able to fully commit to a more kind of mind body approach. 

But that would be a bit harder to commit to, I suppose if there was detectable damage alongside everything else that was going on. And so you know that, yeah, I think that potentially complicates the picture. So for me just having had all those tests getting done, and knowing that if there was something he could do, he would do his best to help me. That was huge. I think that really helped. 

I think his kind of opinion, certainly at the time, was that the most likely underlying cause was something around micro clots. And that was his view. And so actually, some of the tests he did was because he wanted to look for evidence of micro clots in my lungs that he could then treat. But there wasn't any evidence and so he wasn't able to treat that. 

But he did also talk quite a bit about dysautonomia, which I'd already heard of through the Facebook groups, and wasn't hugely surprised that that was what he would diagnose. But the way he described it just gave me a new understanding of it, and quite a lot of the symptoms that I hadn't kind of thought of as under that dysautonomia umbrella - symptoms that he was mainly sort of tying in his head to micro clots. He did also say they could also be part of dysautonomia, it could cause that symptom. And that one, and that one and that one. 

And the way he explained that was something that then actually became quite important to me later on when I started to think, well, everything that's happening to me right now could potentially come under the dysautonomia umbrella. And so how am I going to treat that? 

And then, at some point, I discovered the SuzyBolt yoga Facebook group, and joined her recovery program. And that was almost the start of recovery, I think, for me, was joining that program, and focusing more on that Facebook group than the other ones, because there are still some very, very ill people in that group. But the overall focus was a little bit more on - what can you do? What quality of life do you have? In what ways can you recover, and highlighting that people are recovering and that it is possible. So it was just a more positive slant, alongside all of the questions, right, well, I have this symptom, what helps with that, and, you know, supporting people when they're having a really bad day. 

So it wasn't all just kind of, you know, everything's fine. Yeah, ignoring the fact that we're all very ill - it wasn't like that at all. But still within that idea of we are very ill and there are some very ill people in this group, how can we support them and not dismiss how ill they are, but also focus on what can get better and how you can get better, and what you can do to help yourself. And that was huge, and that kind of led me to lots of other stuff that I then used to recover, essentially. 

But yeah, her online yoga recovery program, that was definitely the start. And at the beginning, I think it was actually the breathing classes, which sounds a bit silly in a way. But because breathlessness was one of my symptoms, I thought, well, you know, if it can help that, that's fantastic. But actually, I think just learning how to breathe more functionally. And also do breathing exercises that calm down your nervous system. At the same time, I think that actually started to help quite a lot of my symptoms, not just the breathlessness feeling itself. 

And then very, very gentle yoga. I mean, I was doing it from bed at first, so it was barely moving. And then very slowly building up. After a month or so I felt like maybe I can actually get out of bed and start doing it on the mat on the floor. But still very gently. I learned about yoga nidra, which is something I didn't really know what it was before. And that was when I actually started to be able to rest mentally as well as physically. 

And so, you know, for the first month or so I was basically repeating the breathing classes, and just doing yoga nidras two or three times each, of each of those every day, and then maybe once a day a little bit of the very gentle movement, sort of yoga stretches. 

After about a month of that I definitely felt much better than I had a month before, I could see that it was improving the symptoms, I could feel that my outlook was improving as well. And you know, because the symptoms were improving, I guess I was starting to feel like well, you know, things can get better. And if I keep this up, they probably will continue to get better. And maybe eventually, I could even fully recover, you know, that's not going to happen overnight. But I could start to see that I could get there. So that was huge. 

So quite early on in some of the Facebook groups, there would be the odd thing that popped up about people recovering through, I guess what I'm going to loosely call a mind body approach. But you know, lots of different kinds of tools within that and different things that people would use within that. But there would be the odd thing pop up about somebody using, you know, something under this umbrella that had helped them recover. 

But then quite quickly, they were getting shot down in some of these Facebook groups as well. And I think I, you know, in my head, I was just dismissing these. I kind of felt like that. If I applied that to myself, I would be saying that it's all in my head, which clearly it wasn't. I mean, these were very physical symptoms. I wasn't making them up. And I knew that and you know, my doctor, in fact, although he hadn't found anything in terms of kind of tissue damage on a scan, you know, he was able to measure how low my venous blood was, he was able to measure my oxygen saturations, which with the tiniest bit of movement, were going right down. You could measure my heart rate and how it was going up to standing up. So there was all sorts of detectable, objective physical symptoms that were there. 

But I very slowly started to kind of understand that maybe I'd misunderstood this. And it was something that really was helping a lot of people. Why was it helping all those people? What about it was helping those people, and could it help me? And so yeah, I kind of made a bit of effort to try and understand that whole concept better, and kind of what it really means, and why that kind of approach was helping people. 

Another one of my symptoms, I guess, that I forgot to mention was just the kind of sensitivity to stimulation. So I couldn't listen to music, couldn't read, couldn't watch TV, couldn't do anything like that, because I would just immediately feel overstimulated. I couldn't really read. But I bought a couple of books anyway, that had been recommended through the Suzy Bolt Facebook page, and just kind of skimmed a few of the key messages, and just kind of had those whizzing around in my head. And that kind of very slowly started to make me understand things in a slightly different way. 

And then one of them was available as an audiobook, which I could actually cope with listening to an audio book, you know, and you can do that in kind of small chunks. And it's less stimulating than anything else. So I listened to "the way out" by Alan Gordon. And that, for me was a game changer. That's what made me fully understand what a mind body approach is, and why it's a very, I guess, genuine way of describing illnesses like Long COVID. And that it doesn't mean it's all in your head in the way that I'd understood that to me, but it explained that the brain has a very crucial role in any type of illness, not just long COVID. 

I guess it's worth pointing out that the book itself is actually about chronic pain. It's not about ME, it's not about long COVID. It's not about any of the symptoms really that most of us are experiencing. It's about chronic pain. But I just understood that if I replace the word pain by symptoms, it's exactly the same mechanism, and it's exactly the same thing that could be wrong with me. So that kind of made me understand that, and once I'd understood that I just decided almost You know, in an instant, okay, this is what's wrong with me. And there's things that I can do. And I'm going to commit 100%, to finding the things that help me convince my brain that it can stop making me ill. 

Because my brain was making me very genuinely ill, but it didn't need to be. And once I understood that, I just decided, Okay, I'm going to convince my brain that it doesn't need to do this anymore, whatever it takes. 

So once I understood this, I found an app called Curable, which again, it's designed for chronic pain. But Alan Gordon is one of the scientific advisors on the app. And because I've gotten a lot of listening to his audiobook that kind of reassured me that it would be taking the kind of approach that he'd been talking about, and that it understood in the same way that I did, the whole concept and kind of what was potentially wrong with me. So I downloaded that. I think you get some material for free, but it's pretty limited. So I just immediately signed up for the kind of the full whack essentially, and completely immerse myself in it. 

So hours and hours every day, just listening to the educational bits, listening to all, it kind of breaks it all down into nice little chunks. And you can sort of work your way through them, however it suits you. So it's quite easy to use. But I just kind of would listen to it in short chunks, but for hours and hours and hours every day, doing the exercises on repeat. And just really making the effort to keep applying it to myself even in between using the app, to just remember what it had been trying to teach me and kind of applying it to myself. 

So it's kind of hard to explain what it does. But I think by listening to the educational stuff, it's almost trying to brainwash myself in some way and convince my brain that I'm not broken, and that it doesn't need to keep making me so ill. And so I just thought, if I just keep listening and listening and listening, eventually, the message will kind of filter down into my unconscious brain. And so there was that, I guess that was part of it. 

But also, it just gives you so many exercises, some of them are more kind of about the way that you're thinking and the way that you're talking to yourself. So trying to stop giving yourself messages of danger that your brain interprets as well, we're in danger. So we need to keep making her ill. So it's just kind of shifting the way that you talk to yourself internally. 

There was quite a lot of writing exercises, which I found surprisingly interesting, as much as useful, because I didn't really know what I thought quite often. And then I'd go through this exercise. And suddenly I'd write something down and be like, Oh, I didn't know I thought that, you know. Sometimes it was something fairly profound about my life or past experiences or something that just didn't know that that's what I thought. So that was quite interesting. And I think that just kind of gets everything out, I guess. So you can then just focus on what you're meant to be doing and focus on. 

It's not about thinking yourself better. But it is about just trying to convince your brain that you're not actually in danger. And there's just so many messages that are constantly giving it that danger signal. And it's just trying to stop those for now, until you kind of get through this and go through the recovery process. So I mean, that's fundamentally what it's all about. But it just gives you lots of different ways of doing that. And you can find some of them will work for you, some of the more, you just kind of go through them all applying what's working for you and just keep doing it. 

And you know, you have to be pretty - well for me anyway, I had to be really committed. But I was. I was always trying to 24/7, essentially every thought I had - think it was that the right thought? Is that is that the helpful thought for me right now that's going to help me recover? If not, there's no use for it. Not today, you know, I can have it another time, kind of thing. 

So yeah, that was what I did, essentially. And as soon as I started doing that, I mean, within two weeks, it was like chalk and cheese. I definitely wasn't fully recovered within two weeks. But you know, compared to how I had been, I was much better and I could tell that it was working. And so I just kept doing it. And after about two or three months ish, I think I could probably almost see I was not fully recovered as in my life certainly didn't look like what it used to do. But I didn't feel like I was ill. And I think at that point, I would have said I was recovering from having had long COVID. Rather than I have long COVID. And it was just a case of building up fitness and building up my life again, from there really. 

But you know, by that point, I could go for walks, I could ride my bike, I was riding my horse again. I could watch TV, I could read books, socialize with friends. I'd even been to a music gig, which you know, it's quite a big sensory thing. I loved it, it was totally fine. 

I think ultimately, the one thing that got me better was probably the Curable app. But all the other stuff led me to it, and doing the breath work and the yoga program kind of put me into the right state to be able to take it on and for it to work for me. So it was a more complicated picture. But if I had to choose the one thing that made me get better, I think it was probably the Curable app. Yeah,

Jackie Baxter  
that's so interesting. I mean, this is something that I've come to realize over the last, you know, three and a bit years is that the body is remarkable. And it has an ability to heal so many different things, if it's in the right environment to do it. But you know, sometimes putting it in that right environment is very difficult if actually, you can't get out of bed and you feel terrible, and you're depressed about how terrible your life feels right now, because that is your reality. And that is the reality for a lot of people. So it can be a really difficult thing. 

And I think what a lot of people seem to have found is like, the first thing. So for me, it was breathing, where I was just like, Okay, now I can sort of see the wood for the trees a little bit. And then that then led me on to other things for you. It sounds like maybe it was finding Suzy's yoga. And that then allowed you to sort of just be able to kind of clear the decks a little bit, to the point where you could take on other things that would then help. So I think, yeah, you know,  the huge moment of finding that first thing, I think, is probably not to be underestimated. And it's almost that tangible evidence that you have found something that has made a difference as well. Certainly, that's how I felt. 

I love how you described your kind of, "I'm not sick, but I'm not better" moment, because I also spent a bit of time in this space where I'd sort of come to this realization that actually things had been improving over maybe a couple of months. That was great, and that I was seeing more and more improvement. And then I sort of got to the point where I was like, I'm not sure I'm a sick person anymore. But you know, I still had so many other Things going on, I still had a whole lot of trauma to work through. I had tons of anxiety, you know, sort of maybe secondary stuff, but it still felt like there were so many things. 

So I was just like, well, I can't call myself recovered. So I sort of sat in this space for a while before I then went on to the "Oh, actually, I think I'm better" kind of moment. So I would be really interested to hear kind of how did you move out of the in between zone into the I'm there kind of moment? What did that look like for you?

Julie Black  
I mean, I guess it was kind of a gradual process. But I think quite a lot of stuff that I talked about that had been going on with me immediately before getting ill. I mean, some of it was just being too busy. And that's just the way it was. And there's nothing to address there, apart from being less busy. 

But the trauma aspect, from well, particularly from getting my horse stuck in a bog, there was a few other kind of little bits and pieces that I might call trauma over the last few years. But that was the kind of one big main obvious, and, you know, quite recent, before I got ill, that was actually - quite a lot of that was addressed through using the Curable app. 

So it doesn't assume that everybody has trauma, and that that's causing inflammation in their brain. So one of the theories is that things like trauma and other things in your life can actually cause inflammation in your brain, which then causes it to misfire and causes it to start creating all these symptoms and pain in your body that it doesn't necessarily need to do. It kind of makes it oversensitive almost, that is just a theory. 

But it doesn't assume that that's necessarily the case. So there's lots of other things that the app does. But one of the things that it does do is give you options to work through these things. And so I did that, because I knew quite early on, I think that, especially that kind of because I recognized that I had a bit of PTSD just from that one incident, I kind of thought that's probably something I need to deal with before I can get better. But the app gives you opportunities to do this. 

And you know, for some people, there might be something really serious, that you actually really want professional support alongside it. And you wouldn't necessarily want to do just on your own with an app, stuck at home. But for me, you know, I was quite comfortable doing it at home with the app by myself. And that seemed to work. So that was fine. 

So about two to three months anyway, after having started using the app that I thought to myself, I probably can't say I've got long COVID anymore, but I'm not gonna go around telling everyone that because I'm clearly not just suddenly back to normal and gonna start working full time again tomorrow, and doing everything I used to do. That's clearly not the case. 

But also, I guess one of my last symptoms was anxiety. And I still, even though I recognized it for what it was, I still kept constantly thinking about long COVID and constantly thinking about getting ill again and constantly worrying about if I've done it all wrong, and I was going to wake up tomorrow and be just as ill as I had been. And constantly worrying that I was going to overdo it and make myself Ill even though I was trying very hard not to let that dictate my life, and not to actually pace in such a prescriptive way or anything. 

And you know, and I knew that that was just the anxiety, but it was still there and it was, you know, I couldn't just not think about this. This was constant all the time, every day all day and it was having to still constantly use all the tools I've learned to just put those aside and get on with doing stuff anyway. And so I knew that I needed to just take time to try and remove myself from that, to try and work through the anxiety, and to try and just not be constantly thinking about being ill, and constantly thinking about long COVID, and constantly waiting for it to come back. 

And so that just took time. And it just was getting the right balance between not going crazy, but also recognizing that even though I was worried about it, I wasn't actually ill anymore. And in theory, and I could do anything I wanted. But just test the waters don't do all at once, but go up a hill, great. And then another day, go meet a friend for a coffee, great. But you know, just doing one thing like that each day to start with, making sure I had lots of time to just do yoga, relax, meditate, sit in the garden and watch the birds, sit in the field and just be with my horse and not even always having to be doing something with him, when you know when that was the thing I was doing that day. 

And yeah, just kind of test the waters with work a bit. So I did start a phased return. But it was very much just part time hours to start with. I'd made it clear to my boss that I didn't want to take on some of the high pressure work, you know, straightaway, that I just wanted to start with some easier stuff. She was very understanding. So I think it took another two or three months between thinking, well I'm not ill anymore. But I'm not going to start telling that to everybody. And I still am constantly waiting to get ill again, really. 

To then be at the point where I could start telling people, I don't have long COVID anymore, I'm recovered. I'm unfit, and I'm mentally unfit. So I still can't work in the way I used to. But it's going to come back and I'm building up now. And to start being very proactive about building that up, and started building up my hours at work taking on some more stressful stuff, going for runs, just doing whatever I wanted to do really to build up my fitness gradually. So I think it was just recognizing that even though I'm not actually ill, it's still a part of my life that I need to just kind of work through and try and put it aside. So I  no longer feel like it's even there, sort of on the horizon anymore.

Jackie Baxter  
Yeah, I mean, I can completely get what you're saying here, because this has been quite a very recent experience for me that I've just been going through. And for me finding the balance between just living my life, because I am just so grateful to have it back. And you know, wanting to just, you know, do all the things and grab all the opportunities and just go out there and do things. You know, go up all those hills, you know. But also, I'm not as fit as I was, I need to build that up slowly. Because if I try to build it up too fast, I'm either gonna get sick again, or I'm gonna get injured. 

But also, you know, the balance with learning from the last couple of years, you know, what are the things that maybe contributed to me getting sick in the first place? And what are the patterns that I want to move away from. You know, making sure that I don't try to do everything all in one day, because that is not a healthy habit. Making sure that I do say no to things, because that is a healthy habit, all of these things, and finding the balance between those two things, when you have the benefit of the experience of the last however long where you're like, oh, but when I do that thing that goes bad. It's quite difficult to get that out of your head, isn't it? And to be like, actually, I can do this and it's fine. And maybe that's what it is, it's adjusting and finding out what life is like for you now, because it's probably not going to be exactly the same as it was before. 

Julie Black  
Yeah, it's not exactly the same as it was before. And yeah, like you, I've tried to keep a hold of some of the better habits and the good things that I've learned, and make space in my life for really just resting and relaxing and sort of smelling the roses almost. But from the outside, it probably doesn't look that different to how it used to be, I guess. 

I am a bit less busy. But I'm back to work full time now. And thriving on that. And riding competitively again, and actually, so my horse and I did our first ever 50 Kilometer competition just two weeks ago. So we've been building up to that before I got sick. But we hadn't done one yet. But we were just building up that fitness at the time. And so yeah, I wasn't actually sure if either of us were fit enough for it, but I thought well, we'll have a go. If it's you know, I know my horse and I'm not tied to definitely doing it. So if we have a go on the day and either one of us are just not feeling it. We don't need to finish, we can just bail out early or do it slower, so we get the distance but not the time. You know, I can just see how it goes. 

Turns out you were both more than fit enough. We absolutely nailed it. He did brilliantly. And we got our team a second in the overall competition. And it was because of our results our team came second so yeah, definitely got that bit nailed. Got some kinds of social life, not a hugely busy one, but then, you know, wasn't before. I'm in my 40s now, I'm not going out getting drunk all the time anyway, and haven't been for a long time. So it's not, you know, it's not that kind of social life, but I'll meet friends for coffee, go to a gig now and then, you know, I have a social life that I want. 

And I still have to do stuff, like there's still stuff that needs done in the garden, in the house, and things that I wouldn't call fun, but that need doing, but I just have a different attitude to them. And so I think for me, it's about, yeah, not worrying too much when some stuff doesn't get done at all, or as quickly as I want. And, you know, it's probably not getting done any slower than it ever used to, it's just that I'm not worrying about the fact that it's not been done. Whereas before, I would have, maybe still not done it, but being worried about not doing it, and stressing myself out about the fact that it is still not being done. And so it's just that mental attitude that's different now. 

I did always do yoga, and I'm doing it, you know, again, now as much as I ever did, but my attitude to it is very different. And I think what I get out of it is very different. So I'm not as focused on the physical side, in and of its own right, that's just almost a tool to getting the more kind of breadth laid and the intersection, and the just kind of where you focus your mind. That's the aspects that I focus on now. And I can feel that the benefits then are bigger, and I get more out of every session, and just the overall effect on my life is better, because I'm focusing on the right aspects of yoga, the aspects that actually do bring you the benefits. 

I do actually take daily vitamin D nowadays, because having done a bit of research, I realized that that's the only vitamin that really has any scientific support, and that we should probably all be taking, and I didn't used to before. So there's that. Whether or not it's making a huge difference to me as an individual, I have no idea. But it's got general scientific backing. So I thought why not? 

Overall, I think I feel better than I have done in years. I definitely don't feel tired all the time now in the same way that I used to. And I might have the odd day where I do. And I can usually link it to my menstrual cycle, or if not, you know, just in an obvious way, well, I had a really busy weekend. I mean, it would be normal to feel tired, but just be a little bit more allowing for that than I used to. But then I bounce back super quickly, and it never lasts. 

I'm still Peri menopausal, but the symptoms are actually less obvious than they used to be. And so again, probably all the things that I'm doing and that I've learned, help that. I think the one thing that hasn't gone away from that is the forgetfulness, that's definitely not getting any better. But you know, that's just that I'm getting older, too. It's just the way it's going to be. I can still function mentally and you know, do my quite complicated cognitive job and all the rest of it. But I do sometimes walk into a room and just forget, why did I come to this room? What have I come here to get, you know, little things like that. But so what, it's not that big of a deal. 

I do still have tinnitus. So that's the one symptom that's never really gone away. But it doesn't really bother me. Most days, I don't even notice it's there. Some days, it gets a little bit louder and kind of shouts Hello, hello, I'm still here. And then I go, Oh, yeah, you're still there. And then I forget all about it. And that's it. So it's just not a big deal. And it might never go away. But I'm okay with that. I think that's the only kind of symptom that is still there in any way, shape, or form today. 

Jackie Baxter  
Yeah, that sounds amazing. Maybe just to finish, do you have like maybe one or two pieces of advice? What would you like to say to yourself, sort of at the start of your journey?

Julie Black  
So I think trying to understand what acceptance means. So understanding that you do need to submit to it for now. But that that doesn't mean you're just giving into that being your reality forever. I think I didn't really understand that distinction. I kind of felt like if I submit to it now and accept it now, then that means I'm accepting that this is how I'm going to be forever, which I didn't want to do. So I think just making that distinction clear, I think would be really helpful. 

And also learn yoga, Nidra and meditation, right from the beginning and do them all the time. Because otherwise you're not really resting. So for me, that was just the way that I actually really truly properly rest, mentally as well as physically. And if I'm having a day where I just feel a bit tired or something now or it's a PMD day, I do yoga nidra and it makes me feel much better immediately. 

And just to really believe that it's not forever, no matter how hard it feels right now. Things change. Everything in life is always changing. Whatever you're feeling today is not how you're going to feel tomorrow. And over time, eventually you can get better, and just really really believe that. I think that would be the key things I'd want to try and convince myself.

Jackie Baxter  
Well, thank you so much for joining me today. It has been so lovely chatting with you and hearing your story and I think there's stuff that I have learned from it. And I'm sure there will be things for loads of other people as well. So thank you so much.

Julie Black  
It's been an absolute pleasure.

Transcribed by https://otter.ai