172 - Jo Thomas - Overcoming the Curse of "Recovery Perfection"

Recovery doesn't have to be perfect to be effective, and sometimes the very quest for perfect recovery can keep us stuck in our healing journey. Jo Thomas shares her personal experience with overcoming POTS and chronic fatigue, highlighting how shifting mindsets and letting go of perfectionism accelerated her healing process.

• Jo's recovery journey came in layers—medical management first, followed by lifestyle changes and nervous system regulation
• Perfectionism, people-pleasing, and overachieving often contribute to chronic fatigue and can hinder recovery
• Focus on responding appropriately to your body rather than pushing for linear progress
• Your responsibility is to take appropriate recovery actions, not to control how your body responds
• What feels like a setback might actually be a normal bodily response to increased activity
• Recovery often means living life differently than before—usually in better alignment with your values
• Becoming overly focused on achieving "full recovery" can create pressure that impedes progress
• Our bodies communicate through symptoms—learning to interpret them rather than fear them is key
• Many people discover that post-recovery life is actually better than pre-illness life
• "Keeping yourself in wellness" becomes a lifelong practice rather than reaching a finish line

Links:

Jo's website: https://jothomascoaching.com/

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

(music credit - Brock Hewitt, Rule of Life)

Chapters

• 0:00 Welcome and Introduction to Recovery
• 2:31 Jo's Personal Journey with POTS and Fatigue
• 10:21 Mindset Shifts for Healing
• 16:42 Moving Beyond Recovery Perfectionism
• 24:34 Understanding Normal vs. Abnormal Symptoms
• 34:04 Finding Value in a Changed Life
• 43:03 Keeping Yourself in Wellness

Transcript

Jackie Baxter: 0:55

Hello and welcome to this episode of the Long Covid Podcast. I am delighted to be joined today by Jo Thomas, and we are going to be diving into recovery. What is recovery? Sort of individuals, different interpretations, I suppose, of that, and this topic of recovery perfection. What is that and how can we get away from it? How can we, you know, recover imperfectly? I don't know. I'm saying words, jo. Welcome today. It's so lovely to have you here. I'm really excited to get stuck in.

Jo Thomas: 1:32

Thank you for having me, jackie. I'm super pleased to be here with you today as well. Just introduce myself really briefly I'm Jo Thomas. I'm a fatigue coach. I also have a background in nursing and I've had my own experience of overcoming chronic fatigue from POTS and I learned a lot myself during my recovery, and I learned more via my training in NLP coaching, plus what I discovered I've learned all my life, my career, through nursing and then just also I've had more insights in coaching people with chronic fatigue related challenges as well. So that's me.

Jackie Baxter: 2:14

Thank you for that. Yeah, I think you know what you just said at the end there. As a coach whether you're a breathing coach or a fatigue coach or whatever sort of a coach you know what you just said at the end there. As a coach whether you're a breathing coach or a fatigue coach or whatever sort of a coach you know, when you're working in this sort of space, we do, we learn from our own experiences, but we do also learn so much from working with others. You know, I always think I learn as much from my clients as they do from me.

Jackie Baxter: 2:39

I don't know if that's true, but I certainly feel, like you know, I do learn something from every single person I work with, and I think that's such a gift of what we do. So I think that's really lovely. So you said that you have had your own personal experience of fatigue and POTS, which is going to be very familiar, I think, to our listeners here, whether it's an exact replica of that or whether that is a part of what they're experiencing, and I'd sort of love to start off by sort of talking a little bit about what helped you and maybe where that got you to now, and I think that might take us into the next bit.

Jo Thomas: 3:27

OK, so to keep it as short as possible, it was 2017. I became unwell. I was diagnosed relatively quickly within three months with dysautonomia. Under that umbrella name condition, it was POTS that affected me the most and I was very lucky to have medical management quite swiftly. I had medication to help slow down the excessive heart rate that's going on with POTS and that helped alleviate or certainly improve a lot of symptoms such as palpitations, raising heart rate, feeling really dizzy, shortness of breath. But what did persist, despite a lot of that improving, was the chronic fatigue, and it took me a while to realise that this is something that was going to take a while to resolve or certainly improve, and medical management wasn't really going to address this problem. But what was really empowering, once I really joined the dots and realised what was going on, was lifestyle changes, mindset, work, nervous system regulation, all these other practices that I could just get on and implement myself once I knew how, could make a world of difference.

Jo Thomas: 4:50

And then my recovery, I often say, was in layers. So in the first stage there was the medical management, and I'm hugely grateful for that. So I'm not a coach that says you know, my coaching can just help you. It can exist with medical management and other disciplines. And I think I always like to be really honest. You know, different things work for different people. We can't get away from that reality. But for the vast majority of people, mindset shifts, system regulation, pacing yourselves and other practices such as that can really help you significantly progress in your recovery, even for some people to the point of a full recovery. So, um, like I said, there was a medical management and then when there was the chronic fatigue issue that was persisting, uh, mindset shifts and pacing really helped me out. So that was like the next layer and actually I got to a point where I was really great and life ticked on quite happily for a while.

Jo Thomas: 5:52

And then we hit the pandemic. And during the pandemic I'm a nurse as well. I still nurse two days a week and I was working in a specialist department. I went back to working in ICU for a while and that was really stressful. I mean, the whole COVID world was stressful to people. It presented a danger and a threat. I was okay actually whilst I was working in ICU, but when I went back to the specialist department and started managing it and just like, many, many months had progressed since then and I think, just this low-grade chronic stress I burnt out.

Jo Thomas: 6:29

And then there was a resurgence of all my symptoms and then I sort of realized I needed to get back to what I was doing a bit and actually I needed to look at some of my deep seated walk patterns because this drive I had to always keep pushing and I almost had this like, um, I don't know, because it was the pandemic and we knew it wasn't going to be perfect and it was a lot of demand on the NHS, I just had to keep delivering. I had to going. I almost told myself there was no choice and I could see the signs I was burning out and I kept thinking my POTS and chronic fatigue might resurge. I carried on and then hit burnout.

Jo Thomas: 7:12

What was good about that time was I temporarily left my nursing job. I did my NLP coach training. I had a lot of aha insights. There was a lot of deep personal reflection. There was a lot of look at free reflective practice at myself, at my personal drivers, and shifting some of those so not only this time to get me back to wellness, to maintain my wellness. So it was almost like three stages my recovery.

Jackie Baxter: 7:43

I'm probably going off on a tangent, but that's essentially what it looked like and I'm sure I will carry on learning as well yeah, I think certainly, something that I found was that, you know, I also kind of did it in layers, you know, not not the same layers as you, but you know, you, you find something that helps, and then you sort of plateau and then you find the next thing and you plateau, you know, and it's. It's that sort of continual search for the next thing, isn't it? And then I got to the point where, eventually, I was like, yeah, okay, I'm good, I'm recovered, and I was very, very terrified, I think, in fact, to start with, that if I put a foot wrong I was going to slide back. So I sort of went into this kind of like sort of terrified perfectionist kind of thing where I was sort of obsessively thinking I've got to do, I've got to keep doing the things that keep me well, you know. So you can tell that one of my drivers is perfectionism, and that was quite an aha moment and it was almost kind of this realisation that life isn't going to be perfect. And that doesn't mean that I'm not recovered, it just means that life happens and that, you know, maintaining, as you say, that wellness for me was continuing a breath practice. It was not falling into the old patterns that I knew, that I easily could, you know, and not sort of working myself to the bone, which is what I'd done previously, of working myself to the bone, which is what I'd done previously, and I think you know, certainly, for me the journey continues. So, you know, I continue to have things that I need to work on, you know, and it's this kind of continual learning, I think, isn't it that? You know, it's almost, for me, once my eyes were opened to what health really meant, you know, I see different ways that I can do better, and that doesn't mean that it was my fault that I wasn't doing them right up until that point. It's almost like you don't know until you know.

Jackie Baxter: 9:53

So I love this kind of idea of sort of continual development, you know that goes on, and the sort of maintenance of health, and I think that's such a amazing I don't know if you want to call it a gift or a silver lining or something to have kind of come out of a really, really awful experience, because let's be real about it, you know whether it's your experience, which started before COVID came along and sort of resurged, sort of during, or my experience that started with COVID, or you know, whatever you know when you're listening, you know, whatever your experience is, it's absolutely horrendous. But yeah, I think for me it was that I had to be able to take something positive from that horrendous experience, because otherwise it's sort of too devastating, almost. So that was kind of my take on it. But you know, we were sort of wanting to go on to talk about recovery, perfection.

Jackie Baxter: 10:57

But you also said something really interesting a moment ago about the sort of mindset shift, and this is one that I think people can, you know, maybe get a little bit on edge about. You know, when we mentioned mindset, because I think people can interpret it that, oh, you just need to snap out of it. Interpret it that, oh, you just need to snap out of it. Or you know, just just think positive and you'll be fine. And I don't think that is really what we're talking about here, is it? Um, but what are your kind of thoughts on the mindset shift versus you can't think yourself better, um, you know where is the balance in that or what? What did you kind of experience?

Jo Thomas: 11:38

So I think when it comes to chronic fatigue recovery, there's so many paradoxes and that's what can make it difficult to navigate. So in those early stages of like that second layer of recovery for me was shifting from so I don't really want to talk about my symptoms or my story in too much detail, because that's not what we're here for, but just to help illustrate this. I had been bitten by a tick and then got sick. So I was wondering have I got Lyme's disease? And I had the testing on the NHS and it came back as negative. But I've been doing some research and they were saying there's far more sensitive tests out there and you know the NHS test can initially come back as negative. So I was doing a lot of research on how can I have a more sensitive test. Is this Lyme's? And that was keeping me kind of stuck in this scenario where I was dependent upon something happening in the future before I could get better. It was keeping me stuck. It was keeping me in limbo. Also, it was driving an underlying fear that you know what, if this is Lyme's, where can I be from now if I'm not getting on with active treatment now? Am I going to be so much worse, that kind of dialogue, which you know is completely understandable.

Jo Thomas: 13:03

But I had this realization with time that so much time had passed since that bite anyway, that having like antibiotic treatment, say, for example, is one type of treatment. The time window had probably elapsed and then I started to to think about. Well, it dawned on me I've got chronic fatigue here and I started to think about the patients I had nursed over my career who have various chronic illnesses but actually seem to do really well despite. And I was thinking what makes them different? And I was reflecting on conversations I'd had with them and I mean, little did I know they were preparing me for my own health journey, but they just had a different mindset. So rather than thinking of themselves as sick people or ill people, they were people that just had a condition. But they had power in them to put in interventions to help improve their health. They just knew they were going to be okay, they were going to be great despite. It was just very different and they weren't always just looking at the healthcare professional to say fix them.

Jo Thomas: 14:14

So I started to reflect upon myself and I thought actually I do know some stuff I can put in place now to help improve my energy levels, such as pacing. I mean, I certainly know a lot more about pacing now. It's very rudimental back then, but it helps. You know you take what you've got. So I started to work on that and I started to view myself as somebody that was on a journey of wellness.

Jo Thomas: 14:38

I was somebody recovering and I also did a few things, like you know, just improve my diet further. I mean, it was pretty good to start with. I took some supplements that helped, that should promote that. They help with energy production and just all of these things helped. And actually I think I just stopped being so fearful of what if and just focused on actually now I can do this, I can do that and I know I'm going to be fine. And as time went on, that feeling of just knowing I was going to be fine got stronger and stronger and my energy level started to improve and, just like other symptoms, I had started to reduce and just like other symptoms, I had started to reduce. So, and with time and continuing with those, you know, I got better and, like I said, I got to a stage where I was pretty great all the time.

Jo Thomas: 15:44

I mean, maybe I was recovered at that point but, like I said, it was then going into the COVID pandemic, the work related stress, not taking care of myself at all I can't think what the word is. I would almost say I was like a martyr mindset. You know you've got to get on and sort everybody else out. This is what the name of the game is, and you know, of course, I fell off my perch again and there was a resurgent of my symptoms and then there's probably elements of those three typical characteristics that people talk about with chronic fatigue. So I wouldn't say I was completely these personalities. But you spoke about one perfectionism, overachieving, people pleasing. So all those things still existed, people pleasing, so all those things still existed. Then my NLP coach training came in and it helped me with those.

Jo Thomas: 16:28

And so with mindset, it was thinking of yourself in the wellness, living in wellness, creating wellness, being in a process of recovery, having that belief that you are going to improve or recover and whichever one you want to take upon. But I also know with working with clients, because you said the just, you know, you just can't think yourself better type mindset. It's because I do think we have to be taking care of ourselves with restorative rest, other practices, pacing ourselves. But also I think the mindset you are using at the time has to feel believable to you. So if you're trying on a mindset that doesn't feel believable and you can feel resistance in your body, I think you don't go there. I think your mind, your brain, starts to find evidence that it's not true and it views it as being dangerous. This mindset isn't good for you. So I'm going to find lots of evidence that's not true and actually maybe give you more symptoms.

Jo Thomas: 17:31

So when I'm talking with people, coaching with people, if they have, say, a limiting belief and it's negative and it's holding them back, if they have, say, a limiting belief and it's negative and it's holding them back, we look at what the opposite would be to that belief and I usually call it the antidote and it's like trying on clothes. We try it on, try that at the moment, hold that thought and usually I can tell by their nonverbal body language if there's quite a bit of resistance. So we explore that and I might say, ok, what aspects of that did work for you and what didn't? Can we dial it back a bit? We find something that feels more believable and we take you there as a stepping stone and I think that helps with nervous system regulation. It helps build the evidence that something is true. It stops so much resistance in the person.

Jo Thomas: 18:18

And it's not to say that maybe you can think yourself better. Mindset doesn't work for some people because we hear about brain retraining and within two weeks people do a lot better or they consider themselves fully recovered and I don't dispute that wasn't the reality for them. But I know for myself and the people I work with it's usually a gradual process. But saying all that, I do believe we still have to have this hope and this belief that we're going to improve and be better underlying all of it. I don't know if that makes any sense.

Jackie Baxter: 18:53

Yeah, and I, you know, I agree about the, the hope and belief, and I also, you know, I love what you said about it's got to work for you. You know, and I think that is so true about everything, whether it's a diet intervention, whether it is a breathing exercise, you know doing a breathing exercise that doesn't work for you is not going to help you. You know you've got to find one that actually works and in a way that works. And it totally makes sense that that works with mindsets and beliefs. So if someone is saying, I can never recover, your antidote to that would be you can fully recover. And if your person is like, oh gosh, no, no, that doesn't feel real to me, then we could look at okay, well, how can we see some improvement? And okay, we try that one on for size, but that's not to say that that couldn't change over time.

Jackie Baxter: 19:51

You know, when you start seeing improvement, then maybe you do have that belief of full recovery. But trying to force something onto someone when they're not ready for it is actually going to have the opposite effect, I think. And you know, and yeah, that's, that's true of everything. So, you know, I think that's a really what's the word. A really wise observation, actually, you know, I think that's really useful. So you know, for anybody listening, if they're thinking, well, I can't fully recover, okay, but you can see some improvement, let's, let's do that one first, see where we go from there. I love that. And you know, you mentioned the three main sort of drivers, or perfectionist traits. Sorry, not perfectionist traits, what did you call them?

Jo Thomas: 21:29

So just character traits. I'm really not one one for labels, but often people do bring them up. So overachieving people, pleasing perfectionism, they're the ones more typically spoken about and when I work with clients I don't necessarily bring them up actually I rarely do, but clients will bring them up.

Jackie Baxter: 21:49

Yeah, and I think you know, if you'd have asked me, like I don't know, six years ago, before all of this happened, if I was a perfectionist, I would have said, yeah, yeah, I'm a perfectionist. Isn't that a good thing, you know? And I think in some ways maybe it was it was what made me a good musician, it was what made me diligent at my job. It was, you know, wasn't necessarily a bad thing, but when applied to everything, and certainly when applied to recovery, you know, I think I realized that it was kind of holding me back and that wasn't that if I suddenly managed to throw away my perfectionist tendencies overnight which isn't really possible anyway that I would be recovered the next day. That wasn't true at all. But it was also that this kind of having to do everything perfectly and all that pressure that that was putting on myself was holding me back and that actually, if I was able to do something a little bit, actually that would probably have more benefit than doing it perfectly anyway, whether it was a breathing exercise or pacing or, you know, whatever it was that I was trying to do. And you know, I think you know, different people have different of these drivers and you, you know, some people have all of them. I'm going to put my hand up to that one Definitely an overachiever, definitely a perfectionist and definitely a people pleaser.

Jackie Baxter: 23:17

I definitely tick all of those boxes and I feel myself, you know, falling into some of those patterns sometimes, and I actually said no to something earlier in this week. And I actually said no to something earlier in this week. You know, I said no to something that I didn't want to do and I would never have done that before. So I want to celebrate that because that's quite a big thing for me. And yeah, so, bringing this back to kind of, you know, recovery and you know, or improvement, or you know, know, whatever we want to call this like, how do we get over this? Because of course, we want our life back, of course we want to be able to do all of the things that we want to do. How do we do that, whilst also accepting that life isn't and never will be perfect? Even if you are fully recovered, life is still not going to be perfect. You know, like, what gives?

Jo Thomas: 24:21

So yes, and I just wanted to add in, you know I mentioned those three character traits. I don't view them as black or white, right or wrong. You know there's many wonderful characteristics to each one and when I'm working with somebody we're looking at actually what serves you well from that and what isn't serving you so well. Maybe doesn't need applying to every aspect. Example um well, actually no, something that frequently can come up when I'm working with clients is, say, I'm working with somebody they're pacing themselves really well, they've got some stability of their energy levels, but they are full of fear of increasing their activity level from due to fear of symptoms and then feeling they're not doing it perfectly if they get it wrong because they get symptoms and also that they feel it's going to be their fault that they get the symptoms. We do some reframing and it can look slightly different for everybody, but just to give you maybe a typical response that can help, a reframing exercise is looking at where we place our responsibilities and our sphere of control. So we look at the fact that the environment looks good, to try pacing up, increasing our activity level because we've got some stability over our energy levels and less symptoms and some people will pace up with some mild symptoms that they decided to tolerate. Some people wait to have no symptoms. So, like I said, it's very individualized and everybody's recovery can look different. But it's their responsibility to help aid their recovery by attempting the next stage of pacing up.

Jo Thomas: 26:04

Then they wait to see how their body responds. It is not their responsibility how the body responds. They don't know what the outcome is going to be. It's like engaging a conversation in yourself, between yourself and maybe whatever term you want to use your brain, your mind, your nervous system. So I'm going to start the conversation with my I'm going to use the word brain. I'm going to start the conversation with my I'm going to use the word brain. I'm going to start this conversation with my brain by testing the waters, by increasing my activity level. My brain is then going to give me a response. It might give me just some mild symptoms that disappears after a while. It may give me quite a lot of symptoms that actually really are limiting, limiting me right now, and it doesn't feel okay. So that can be two sort of potential outcomes. What my responsibility again is just to respond appropriately, make a call and respond appropriately. It is not my, it's not your responsibility the symptoms you get. So once a lot of my clients have that shift, I call it testing the waters. They feel much braver about it and less fearful of the outcome, and it gets away from this idea that you ought to blame if you have more symptoms because you're not, and it gets away.

Jo Thomas: 27:22

It helps to get away from this idea of recovery need to be perfect, that every time I try something new it should just go in a linear fashion. It often does, and we can often have setbacks and we get learning from them and then we move forward again. Sometimes the environment can look like it's the right time to increase our activity level, but actually what we needed was just a longer period of consolidation or stability and then we go again, maybe in a week or two's time, whatever the time frame might be, so that can really help and then just looking at where our focus is. Um, so save your focus.

Jo Thomas: 28:02

If you're looking at recovery in terms of recovery, perfection, that everything, that every few weeks you're going to increase your activity level and you're going to be successful and then you're going to carry on progressing, it's just, it's a reframe. That actually recovery probably won't look like that all the time and what a good, and maybe the concept of good enough, or the fact that when you're approaching your recovery, it's about trying to think of the best terms of words here. It's about responding appropriately to what comes along, what happens to. You know, life rose curveballs too. It's responding appropriately. That's doing a good recovery is responding appropriately and if you need to rest more or take, take a step back for a moment in time, that is a good recovery because you're responding appropriately.

Jo Thomas: 29:27

Um, so I think that can help. And then sometimes, just looking at where people also place their focus in terms of I should be doing all of this physical stuff right now, but also looking at a shifting focus that has a bigger perspective, looking at, actually I'm going to be really I'm going to get much better. That will be good at the resting stage. I'm going to be good at these practices and stuff. And, like I said, because I work with people one-to-one, it becomes apparent when I'm working with them what we need to adjust, what we need to reframe, what is the mindset we need to look at. And sometimes we need to take the focus off being the need to be fully recovered, because it can put a pressure upon ourselves which we can be aware of consciously and subconsciously, and when we shift the focus to looking at what we're doing now instead, somehow it helps people progress forward.

Jackie Baxter: 30:27

Yeah, because I think what I mean certainly what I discovered and I see this in people as well is that you know you start doing better um, and you know things start improving, you find things that help. You know you're maybe you are able to do more things, um, enjoy life a little bit more um, and that's wonderful when that happens. But then that, I think, for me, was where the perfectionist really started kind of kicking in, because it was like, right, things felt fragile because you know, we all know that you get an up and it's always followed by a down, um, you know, because we've experienced it, however, many times before. So it's almost like you know you're upswinging and you're so scared of you know quote unquote making a mistake that is going to cause you to downswing, that actually you sort of. You know, certainly for me, I got really scared of doing more things. I got, yeah, very sort of having to do everything perfectly and and that sort of almost in hindsight, kind of immobilized me, um, you know, and probably held me back, whereas maybe if I'd sort of swung a bit more freely, um, I wouldn't have kind of got into that kind of sort of perfectionism thing, whereas actually in hindsight, maybe what I should have done is to have just really enjoyed the fact that I was able to do more things and really kind of got stuck into how amazing it was that I could do whatever it was that I couldn't do before, and and enjoy that.

Jackie Baxter: 32:10

And you know, I think, yeah, people do often get so hung up, I think, on the full recovery that there's that pressure, you know, making them actually that's actually kind of holding them back from that. And you know that's such a difficult one. You know you mentioned earlier that there's so many paradoxes here and I feel like this is almost another one. You know that you're so close you can almost touch it and it's the fact that you're focusing on that that's stopping you from actually getting there and stepping over the finish line. And you know, I don't know, I mean it's, it's so difficult, isn't it? Maybe maybe this is where your point about you know, letting go of that desperation for full recovery and actually just leaning into the, the stuff that you are able to do at that point that maybe you subconsciously drift over the line without even noticing, and I don't. I get the impression that's that. That's sort of where you're floating around at the moment in your own journey yes.

Jo Thomas: 33:17

So, um a long time I've described myself as being sort of 95% recovered. But um, you know, jackie and I chatted a little bit before we jumped on recording this podcast and we spoke about this briefly and it was when I was filling in the information for this podcast interview and I was typing. Again, I consider myself 95% recovered. I thought you know what. I cannot even remember when I last had any fatigue or POTS related symptoms. It's at least a year, maybe it's a lot longer, maybe I'm going to the two-year line benchmark. So maybe I am fully recovered. But what I was also saying to Jackie is it doesn't bother me, it's just like not something I think about because things are great and if I should get a few little symptoms, I know there's going to be a few little symptoms telling me that something is out of sync in my life. Maybe there's a stressful event going on that I'm trying to block out or plow on through slightly. Maybe I've got a virus brewing that I'm unaware of. Um, so it just it just notifies me that I just need to check in, reflect on what's going in and see if anything's out of balance and if that needs addressing. So to me I'm probably I'm fully recovered or maybe I'm 95% recovered, but the fact I know that this is how my body communicates with me, it's not an issue. It's almost irrelevant what that final line is, but what we don't. So getting a few symptoms helps keep me in check, which is brilliant. But what we don't want to be is fearful of those symptoms, because then they start to override again. So it's just a way I know now that my body communicates with me by giving me very, very mild, subtle physical symptoms, I check in on what's going on and do what's required.

Jo Thomas: 35:26

And when I talk about living life in balance, balance is definitely a constant shifting landmark as such, you know. So I have a family, I have young kids, so my priority is family time over work, but sometimes work has to be the priority over family time or unexpected things crop up and they change what's going on, so we might have to shift around. So this idea of like a perfect work-life balance or whatever balance it is you're looking for, is constantly changing, but it's knowing how to navigate that and keep moving with it and being flexible with it. So yes, and I do know myself, for that final stage of recovery, not being focused on the need to be fully recovered just shifted me along. Being focused on the need to be fully recovered just shifted me along and I think that was because I was focused on what I could do. But also in that I think it's really regulating for the nervous system being very present in the moment. It's you know, you're letting your nervous system know that this feels really safe, everything's good and I've got this.

Jackie Baxter: 36:34

But that's what worked for me and I see it work for others yeah, and I think you know I find this really interesting because I think, through a condition like this part of the healing journey or the journey of recovery or whatever you want to call it, is this greater awareness. So you know how much of the stuff that I now notice, you know, when I get stressed, I feel it in my body and I go, oh, I'm noticing that. Um, you know, that must have happened before. I just ignored the hell out of it because I didn't have that awareness. And even if I did, I didn't have that awareness. And even if I did, I didn't have time for that. So you know, I would have ignored anything that I even had noticed. So I think, you know, the greater awareness is a gift, but it also is something that I think we have to learn to understand. But you know, I think one thing that I also found really helpful when I was starting to sort of see a lot of improvement. So I'd done the downswing where I was doing less and less and less and less and still feeling worse and worse and worse. And then I'd done the bit where I found a load of things that helped and I'd done my sort of gentle, sort of, you know, stepping up, up, plateau, step up, plateau and that sort of thing. And you know it was as I was, sort of I suppose in hindsight more on the sort of final upswing, although I didn't know that at the time you know I was was having to ask myself what is normal, what is a normal response, and know it's hard to answer that question because you know you're a very different person after going through something like this. You know, for me I would say I'm a much better person but you're certainly a very different person. So what is normal? Well, normal is shifted. But you know it's kind of like.

Jackie Baxter: 38:38

You know, if I increase my activity, you know, say I walk for six minutes instead of five, or seven minutes instead of five, you know I would expect to feel tired after that because I've increased my activity. Now I would expect to feel a bit tired. I wouldn't expect to be in my bed for two weeks. So it's coming back to what is a normal reaction to having increased your activity by I'm trying to do maths here almost 50%. You know it's like if you were, if you were, an athlete. Say you ran 5Ks twice a week and then suddenly you step up and you do a 10k, you know you're going to notice that because you've doubled it. So you know, putting that back into the context of long COVID or ME-CFS or POTS, so you know it's yeah, it's that what is normal kind of thing, isn't it?

Jackie Baxter: 39:32

And I think as we start to come out of these things, our body does start to react more normally. And if we can kind of say to ourselves, okay, this is a normal reaction, then we don't suddenly go into that complete panic cycle that we can get into because, oh, my goodness, my heart rate's gone up, you know. And then you know we can get incredibly activated by that happening, whereas if we go, oh, my heart rate went up, well, that's because I went up the stairs or I did some walking or I did whatever oh, ok, you wouldn't expect that to happen Then you can sort of I don't know if justify to yourself is the right word, but there's safety in knowing that it's normal isn't there, but there's safety in knowing that it's normal isn't there, I think you know. And knowing that this is what's supposed to happen rather than this is an abnormal reaction. Therefore my body isn't functioning right. Therefore, I have quote unquote done it wrong, which isn't even the right way to think about it, even if that was the case, um yeah, I fully agree.

Jo Thomas: 40:40

So it's remembering what is normal. So say, for example, um, somebody's pacing themselves and then one day they felt fine, and then the next few days they didn't feel quite so energized and they felt a bit more tired. At the end of the day and I'm not talking about somebody that's having, you know, pem or energy crashes they might start to think like, oh no, why do I not feel quite so energised today and why do I feel ready for bed half an hour before, half an hour before bedtime, whatever their normal bedtime is? And it's like thinking back to before you became sick. That's what it was like. Some days you'd be a bit more tired than others, particularly if you did a little bit more, and I think we can forget what normal is. You know, I'm not suggesting for one moment having chronic fatigue, is just being tired.

Jackie Baxter: 41:34

I'm not at all, it's completely different.

Jo Thomas: 41:36

It's like a completely heavy body can hardly move. This body experience of tiredness and you know you wake up unrefreshed. It's completely different. But, like you were saying, it's also remembering that after you've done a bit more it is normal to feel tired. And I think sometimes we can forget that slightly when we're on the recovery journey and we can overanalyze some of the details too much and some of it just has to be accepted.

Jo Thomas: 42:05

And I know for myself our brain can play tricks upon us Because when I think about where I am now and how much I can do and it is a lot where my brain will go for a point of comparison is to how I was in my 20s.

Jo Thomas: 42:20

I'm in my 40s now and it will want to use my 20 year old self as a point of reference, which isn't realistic at all. And you know, in my 20s I didn't have two daughters, I didn't have a dog, I wasn't doing two jobs and I was younger and I had a lot more time to rest up as well. So it's just sometimes watching what you're using for a point of comparison and just remembering what is normal tiredness or you've increased your activity level. Yes, you're going to feel it in your body a little bit more and sometimes it's bringing that back in because when we're going through our journeys with recovery, with chronic fatigue, everything can become very worrying. Every little subtle change can become very worrying and that feeds into the fear and that can keep us stuck and it can dysregulate our nervous system. And just to have a healthy point of reference that, if you know this is really mild. I would have got this before.

Jackie Baxter: 43:24

I was sick and it is worth remembering that. Yeah, and I think one thing that I did, certainly to start with, was I over glorified my previous life. So you know, I wanted nothing more than to get back to the perfect life that I was living before. You know, I would have given absolutely anything in the world to have my perfect life back. And then, you know, part of my kind of recovery process was kind of realizing that I didn't live the perfect life.

Jackie Baxter: 43:53

You know, I sort of feel like I do now. You know I feel like I'm incredibly lucky that I now do kind of live that perfect life, but you know, I mean, it's not perfect at all, but you know, it feels, it feels good, it feels good in my body, it feels authentic, whereas the life I was living before, you know, was constant stress. I was doing a job I didn't love, I was overworking, I was over exercising, I was over everything, whereas now I have this sort of increased awareness and much greater, I suppose, gratitude for everything, you know, appreciation of everything. So you know, it's kind of like you said about your point of reference. You know there's a there's a timeframe thing there.

Jackie Baxter: 44:46

You know there's a there's a time frame thing there because, as you say, you know, in your 40s you're very different to your 20s in terms of your energy and your perspective and what you want from life, I suppose, but also, yeah, you know, not falling into that trap of wanting something that actually maybe we don't want, you know, and kind of you know, what is it that's important to you and how can we go about looking for that? I think you know, certainly that was was my experience, um, but you know it took me some time to kind of come to that realization. I suppose. You know I fought against it a lot. You know, I think some things do take time and and also it's very personal, I think.

Jo Thomas: 45:26

Yeah, I fully agree and you know, my life looks different to what it was before I had the pots and the chronic fatigue is better for it and I live my life much more in alignment with my values and beliefs. I say no to things I should say no to now that I wouldn't have done before. Absolutely congratulations to you earlier, saying no earlier this week. And when you listen to people who talk about recovery stories, they'll often they are now often living life slightly differently so they can maintain their wellness. So, and I know myself, like I said, it was 2017 that I was diagnosed with dysautonomia POTS. I was following, being bitten by a tick. At the time, I thought it came out from nowhere and it just, you know, shook my, my world and it was a crash when it happened.

Jo Thomas: 46:21

But when I look back, I think I had symptoms of POTS during my second pregnancy, but they were super mild and infrequent and I just put them down to being tired because I was pregnant and blood pressure changes. But when I really really looked back and reflected, once I was able to, my life was too busy, it was too stressful, I was trying to do too much all the time, I was burning myself out low grade all the time. I wasn't keeping myself in wellness, and my body knew this. And this is what I feel now. My body knew this.

Jo Thomas: 46:56

The tick didn't cause the problems, it was just the tipping point. And it was just that tipping point to put some more fear in me on top of all that chronic stress, and my body said no, we need to stop now. And you're not listening to me, because those warning signs that I listen to now, I'm sure they existed before, but, like you said, I well, I didn't deliberately choose to ignore them, I just did because that's how I live my life and almost that's how we're brought up to react um, and then just crashed and had to learn my lessons the hard way. But I have done now.

Jackie Baxter: 47:34

So there we go yes, and I love that phrase that you've used a couple of times now keeping yourself in wellness. And I think you know this was something that I learned. You know, not that I valued money above everything else, or that I valued status above everything else, but now I value health and the freedom that that gives you above everything else. You know, above work, above money, above what people think of me, you know, and I think you know, if you want to say that there's a gift to come from all of this for me, I would say, is that you know that that health is the most precious thing that we have, the most precious thing that we have, and you know, maintaining it, keeping yourself in that health, in that wellness, has has got to be the most important thing.

Jackie Baxter: 48:25

Um, and you know I, I think I, I've truly learned that as, as you say, the hard way, Um, but you know I, I think it's, it's a lesson that will, will serve me, you know, going forward. Jo, thank you so much for coming along today. This has been so much fun. I think we hit record, not really knowing exactly where we were going to go, and I think it's been, it's been fascinating for me. I think it's been really useful for people listening as well, and I will make sure that I put links in the show notes so people can get in touch with you if they would like to.

Jo Thomas: 49:00

So thank you so much oh no, thank you, jackie, it's been a real pleasure. I've enjoyed it too, thank you.