192 - Pacing, Connection, & Patient, Messy Progress - Kelly's Recovery Story

I talk with Kelly George about losing and rebuilding identity through Long Covid: the crashes that forced pacing, the relief of being believed, and the slow return of capacity that now lets her design a life she actually wants. Hope here isn’t vague—it’s built from activity management, nervous system care, and community that shows the way.

• life before illness as active mum and professor 
• infection after mandates lifted and symptom escalation 
• debilitating fatigue, brain fog and loss of identity 
• isolation within relationships and shared loss framing 
• early support surge then fade and asking for help 
• being listened to as regulation and relief 
• pacing, baseline setting and crash prevention 
• links with ME/CFS knowledge and specialists 
• nervous system regulation through rest and small practices 
• community and CFS Health programme benefits and limits 
• mindset without blame, celebrating tiny wins 
• defining recovery, cautious cardio and rebuilding work 
• coaching mums, caregivers and higher-ed professionals 

Connect with Kelly: 

https://kellygeorgecoaching.com/baseline-101 

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

(music credit - Brock Hewitt, Rule of Life)

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Chapters

• 0:00 Welcome & Kelly’s Background
• 3:25 Full Life Before Illness
• 6:40 Infection Timeline & Early Symptoms
• 11:27 Debilitating Fatigue & Identity Loss
• 17:07 Isolation, Relationships & Shared Loss
• 22:34 Support Fades & Asking for Help
• 26:14 What Helped: Being Heard, Not Fixed
• 29:34 Crashes, Pacing & ME/CFS Links
• 35:04 Nervous System Regulation & Real Rest
• 39:44 Community, CFS Health & Mindset Nuance
• 46:12 Rebuilding Capacity & Defining Recovery
• 51:22 New Work, New Values, New Life
• 55:32 Advice to Past Self & Hope

Transcript

Jackie Baxter: 0:56

Hello and welcome to this episode of the Long COVID podcast. I am delighted to be joined today by Kelly George, who is here to share her recovery story. So we're going to discover what worked, what didn't, um, what recovery looks like. So a very warm welcome, Kelly. It's so nice to meet you and to have you here today.

Kelly George: 1:17

Thank you so much, Jackie. Um, it's we've had a moment or two to talk before we hit record. And I just have to say it's already been such a delight. I I just am a huge fan of getting to connect with you. And I'm really happy to be able to talk with you and just to share my story with others so that it can be helpful in whatever way it can be.

Jackie Baxter: 1:42

Absolutely. And I think that's the thing with recovery stories, isn't it? No two people's journey are going to be the same. But what we can share here is some ideas, uh, some inspiration. Um, maybe even just the tiniest little thing that you say sometimes makes a huge difference to somebody. And we don't always realize what those tiny things are. So it's so important to hear recovery stories. So can you say just a little bit about yourself and maybe what life looked like before you became unwell?

Kelly George: 2:13

Sure. Um, so I was a professor of media and communication. I taught at a small regional university in Pennsylvania in the US. My kids were uh, let's see, six and seven, I think, um, when I first got sick. So, you know, two, you know, when I was uh working, two little kids doing the, you know, wake up early, get the kids ready, drop them off at daycare or school, go teach several classes, um, you know, do your reading and your research for your research publishing, and then come home. Maybe like if I'm lucky, I have a quick snack, like, you know, a cheese stick, and then and then head back out to pick the kids up from you know, daycare or school, bring them back, make dinner. Um, you know, there were parts of it that were really great, of course. And there's parts of it that I look back at and think, my gosh, what a grind. How was I even doing that? Uh, how was I not aware of taking time for myself or taking breaks? But yeah, living like a full life that included uh, you know, exercise, uh, playing ultimate frisbee. I don't know if listeners are familiar with that sport, but um my husband and I, you know, did that. Um, you know, occasionally playing game nights with my friends like once a month, you know, having them come over for these really intense strategy board games, right? Where you're using your um, you know, cognitive ability, like that your extra cognitive ability that you that you have when you're healthy. Like just the idea of it is so preposterous when you think about, you know, all the things that change when you get sick. But um, but yeah, that that's what life looked like. It looked full and busy and different, you know, really different from obviously from when I was sick, but also different, different to what my life looks like now.

Jackie Baxter: 4:15

Yeah, and we'll get to that bit um because I think that is important. Um, but you know, I I think, you know, and I'm sure we'll get into this as we start talking about your illness and the things that helped, but it's really hard being sick and it's really hard getting better. Um, but if you have people who you are caring for who are literally relying on you for their survival, like small children, for example, like you do, you know, that must make or it must be different. I don't know if it makes it more challenging or less challenging, and it's not a competition, um, but it's an extra element, I think, to to consider, isn't it? And I'm really interested to hear how that worked for you. So I think we'll probably get to that. Um, so let's talk a little bit about what your kind of illness looked like. Um, what were your sort of main symptoms? Um, you know, that sort of progression from initial illness that, you know, quote unquote shouldn't have caused an issue to what then became a much longer sort of illness. So, what did that all kind of look like?

Kelly George: 5:23

I guess I just want to notice that when you said the quote unquote shouldn't have become an issue, I feel like that's really um that really resonates with me because I had had a couple of instances in my life where that was the case, where I'd had illnesses that doctors said, we don't know why you're better yet. And I think a lot of people have that kind of a medical history prior to long COVID. So I'm suspecting that there may be others for whom that sort of quote shouldn't have been an issue, also, you know, is tender or like resonates. Um, so so that definitely resonates with me. But uh got COVID um, unfortunately, like right after the mask mandates lifted in my area. So in other words, we um it was uh 2022. So it was, you know, things but schools were back, and you know, we were all back at, you know, back business as usual to some degree, but there were still masking at the school at which I taught and masking in my children's school. And the mask mandates lifted. So all of a sudden nobody was wearing masks at school, and we had previously been very safe, you know, uh trying our best to whatever stay healthy, not get sick. Um, and after the mask mandate lifted, I was like, you know what? There we're not being protected when we're in these huge, you know, environments of being exposed to lots of people. There's no reason for us to continue to be so protective about who we have in our home or play dates and that kind of thing. So, you know, it's just it's just an unfortunate thing that happened. Like we had a kid over for a play date, and the next day his mom said, Oh, he tested positive for COVID. And we thought, okay, like this is happening. It's here. We're we're probably gonna get sick. We went a week without symptoms, maybe my so this is my son and I both ended up getting it at the same time, but we went a week without symptoms. Uh, like it's kind of midweek. I started to feel kind of funky. Like, you know, I was I was fine, I was doing my normal stuff, but I can remember really vividly being in a class and doing like a one-on-one conference with a student. And I I just got this kind of it's like almost like before you get the flu. And you just your body is becoming on high alert in some way, and you can feel something kind of rising in you. It doesn't stay that way, but it's this moment where you think, oh, I'm gonna get sick soon, right? And uh at first it was kind of like the flu. Um, it wasn't terrible. I can't even remember. I think, yeah, I had a fever. Um, I was definitely extremely fatigued, like the worst flu fatigue you've ever had, that kind of thing. But it wasn't until, you know, I was seven, eight days in, ten days in, fourteen days in that I was getting worse instead of better. Um I was sleeping nearly around the clock. Um I was having trouble waking for meals. So, you know, my husband was trying to bring me food and I couldn't wake up. Uh and it wasn't until a couple of weeks in that I started to even realize all the symptoms that were happening that I really couldn't think. I really couldn't talk. I really couldn't read. I couldn't uh, you know, it was very difficult to make my just to make my way to the bathroom was a fatiguing uh trip. Uh you know, showering obviously was not something that could be done with any regularity, all of the things that um folks who experience this really debilitating fatigue know about and experience. And so I had lots of symptoms. There's always, I think, for most of us, like a long list of symptoms that you know, heart palpitations and muscle weakness, really severe muscle weakness, where I just, you know, couldn't lift my arm to brush my teeth, these kinds of things that are really alarming, uh, I think. Uh and yeah, and the and the brain fog was a really intense one. There's ones that I think I probably have forgotten because it's uh the the my overwhelming memory of it at this point is just the debilitating fatigue, the inability to really take care of myself. Certainly I couldn't take care of my kids. And uh, and of course the inability to work. So I never returned to work after that absence. Uh and yeah, and that's still a sad thing for me. And I'm sure others can relate to that. That this, you know, jobs are a primary source of our identity, and losing that is uh a really major life event in addition to the illness.

Jackie Baxter: 10:56

Yeah, you're so right. And this, you know, you you just said identity, you know, and and as you say, you know, what what you do for a living is a lot of your identity. You know, there's there's a lot of other things. I mean, you know, you you're a mum. Um, so I imagine that's a big part of your identity, and you know, the things that you do with your friends and things that you do in your spare time, your ability to read or watch movies, you know, all of these things are part of that identity. And when you get something like long COVID, you kind of lose all of it, don't you? You know, it's it's not just a job loss, which as you say is a major life event on its own, but it's not just that, it's all of those other things at once. And you sort of, on top of this physical, sort of, I'm gonna say discomfort, but that's like a very um very nice word for what it is. Um, you know, this physical pain, um, you know, there's the mental pain as well that you're experiencing, but this total like the bottom drops out of you, um, and you don't really know who you are anymore. And that's, you know, it's a terrifying thing to happen, isn't it? And when, you know, you're going through an experience like this, you also feel completely alone, like no one else gets it. Which, you know, is also really scary. And, you know, there might be people around you who care about you, but they don't know what you're feeling and they don't get it. And that almost makes you feel more alone. I think certainly that was what I experienced, that kind of isolation of even though I had a partner who really cared about me and was able to do things for me. He sometimes made me feel more alone because he didn't understand it, even though he's a wonderful person and was doing his best, you know. And then I felt bad about that.

Kelly George: 12:38

Yeah, yeah, there's kind of these layers of isolation, isn't it? Because in some way you're isolated even from yourself because you because of this identity shift that's happening, this sort of extreme loss of identity or identities, right? Like you were a mom, now you can't take care of your kids. You were a professor, now you can't go to work. You had a group of friends, now you can't play frisbee with them or play board games with them, right? So you're kind of isolated from your former self, and then you're isolated from your typical, you know, group of people. And I mean, I can remember having a conversation with my husband probably a year into illness, um, where I said, you know, I just I think you're trying not to burden me with how hard this is for you, but I really actually want to know what this has been like for you. I want to hear the ways in which it's hard for you, the ways in which you're struggling. Because even though maybe on some level that's gonna make me feel bad, it what it's really gonna do is remind me that we're in this together. We're having this experience together on some level. And even though your experience of it is very different than mine, it is actually a shared experience in one way or another. And even though that was like a brief conversation, it I still it still stands out to me. I remember it, you know, it was a moment of connection to say, this is happening to him too. And for me to be able to put myself in the role of whatever minimal support I could give him, just even by listening and by taking on his story, also um, I think was important, you know, and I think that can be helpful. I think we could even have those conversations with our friends, you know, how is this impacting you? How is this impacting our friendship? Um, we might not have we may not all have capacity for that, certainly, but I think, you know, in whatever small way you might have capacity for it, it's kind of an interesting way of bridging the isolation, you know, and acknowledging it, uh, how difficult it really is.

Jackie Baxter: 14:42

Yeah, I you're you're right. And I think, you know, connection is so important in our nervous system, in our lives, you know, and you know, the pandemic kind of proved that for everybody, didn't it? That everybody became isolated. And then, you know, some people obviously more than others, and then when you got ill, you know, there's that extra level of isolation. But I think, you know, even people who haven't had this experience have some idea of what that isolation now feels like, which is quite interesting. Um, you know, and and it's probably not a comfortable thing to have experienced, but you know, it was maybe maybe makes us value it a little bit more. Um, but I think, you know, you're you're so right that those, you know, lung COVID obviously affected you because you were experiencing it. And, you know, it's utterly awful to go through it, but it does affect those around us as well. And I think one of the things that I totally didn't appreciate for quite a long time was the effect that it was having on my partner, you know, and I sort of thought, oh, your life is so easy, you know, you're not ill every day, you have joy in your life, you can go and exercise, you are able to work, you know, you can do things, you don't have to choose between having a shower or, you know, whatever. You know, it's it's like, you know, your life is so easy, like, you know, and and totally kind of dismissing the fact that it wasn't easy for him to watch me going through what I was going through. And it also wasn't easy for him to have to suddenly take on all the household chores, even though, you know, he was he was pretty good about doing that. Um, you know, so so just because things were really awful for me doesn't mean that they didn't also affect those around me. And I think, you know, I can't remember who it was that said it, but there was someone that said that true connection comes through vulnerability. And I think that is so true. And I think sometimes, you know, if we're able to open ourselves up, even just a little bit, we're able to then connect with others in this really beautiful way. And that doesn't mean that we have to push ourselves to have conversations we're not able to have. It could just be like a text or, you know, holding someone's hand or something, you know, these tiny little moments of connection are so important. And actually that, you know, if we connect with the right way and with different people, that actually fills us up rather than depletes us. Um, so you know, that that connection is so important. And I'm so pleased that you were able to have that conversation and that that helped you as well.

Kelly George: 17:12

Yeah, I think it's important to remember the way there's loss for others as well. Like for my husband and I, um, we used to do a lot of physical activities together, you know, and that was something that was a common shared interest, right? Like, let's go for a jog, let's go for a bike ride, let's go for a hike. And suddenly he didn't have a partner in that anymore. So we both lost that within the relationship. And I think there's a lot of versions of that that um there's something about recognizing it's kind of like it puts the illness as the third party outside of the connected group of people, right? So you can both kind of look at the illness together and be like, man, like that stinks that that illness took this away from us, from both of us, right? Not just from you, but from us. And it yeah, again, I think that that I think that's helpful. Um and I also want to just say briefly about connection. My experience was that at the beginning of my illness, I felt, in fact, very connected. I reached out to lots of people to say, doctors are telling me I had long COVID. If they're saying it's going to take six to eight weeks for me to recover, which at the time people were like, gasp, six to eight weeks, which is hysterical because it took like three years. Um, not hysterical, but you know what I'm saying? People can understand the morbid humor, I imagine. That happens sometimes when these things happen to us. But um, and and people really, friends and and even, you know, people who were just neighbors. I mean, people really stepped up to help with the kids and to just offer to text me. I mean, my phone was blowing up with how are you? What can we do to help? So beautiful that people were able to do that. And I'm so grateful for that for every person who did any little thing, even sent flowers or all the things that they did. But people who are ill for a long time or have chronic illness know that that can't last forever. There's a kind of honeymoon period which is completely normal, and which I myself would also do if I had a friend who was having a um crisis of some kind, right? You have this period where you're aware of the crisis, you're you're doing everything you can to help, and then the crisis just keeps going. And it's year one and year two and year three, and and beyond that, and there's only so much that you know, extra capacity that people have. The majority of people don't have that extra capacity. And it's an important thing to normalize, I think, and kind of know this is part of the experience. Usually, there's some element of, you know, pockets maybe of increased social support, and then a sense of, I think a lot of folks feel a sense of maybe guilt about continuing to request help. Um, they don't feel, we don't feel safe continuing to request help because we feel as if it will degrade the relationship over time in some way if you are always the receiver of help. I think these are all, you know, really normal ways to feel. And um, you know, one of the ways that it can look, one of the ways that social support can look over time when we're when we're thinking about chronic illness. But yeah, just being able to ask for and receive help is such a critical component of recovery and one that people struggle with too, I think.

Jackie Baxter: 21:01

I think the other thing that I didn't appreciate at the time and do now with a little bit more perspective is that also people do want to help, but partly they don't really know what to do and they have that sense of helplessness. Um, and we often don't know what to ask for, even if people are offering. But I think people are also worried about saying the wrong thing and doing the wrong thing. And, you know, I would always rather that someone said the wrong thing and got in touch than that they didn't get in touch. But also I know that if it was me on the other side of it trying to help someone else, I have also fallen into that trap of saying, oh, I don't really know what to say to that person. And rather than just reaching out and saying, I'm thinking of you, um, you know, I would often be like, oh, I don't know what to say, I don't know what to say, oh, I'll just not say, you know, and the default will be that I don't say anything because I'll never think of the right thing to say. Um, so I, you know, it's a really difficult thing, I think, from both sides. And I certainly have a bit more um, maybe compassion for people who maybe want to help but don't really know what to do because it it is it is really hard. And I think, you know, if there's anyone listening who is in that position of wanting to help but not knowing what to do, ask. You know, I'd like to help, what can I do? Might might be a good way of doing that. But it has taken me going through this experience to kind of to realize that that is maybe what what I should have said to people. Um so yeah, this, yeah, but connection, so it's so important. Um, so we've kind of tangented actually beautifully into what I was gonna say next, because the next thing was what what did you find that helped? Um, so connection and asking for help and conversations with your your husband, obviously huge. Um, but what else did you find? What was what were the things that helped, or maybe the things that didn't help? Because we find plenty that don't work as well, don't we? That's a great point.

Kelly George: 22:59

I mean, yeah, on that note, I feel like one of the things that I tried that ultimately I didn't continue doing was acupuncture. And I would say the way in which it was helpful was that, I mean, I mentioned this just because it was one of the first things I tried when I was still very, very sick. And uh the way in which it did help is that this practitioner was just so good at listening and took my symptoms so seriously. And for her, they fit, for her, they made sense. You know, she had a rubric for them, she had a um an approach in, you know, under an umbrella under which they all made sense to her. And it was just so relieving to have that experience rather than the experience I was having with traditional medicine, where the doctors were truly confounded, very concerned, often, you know, especially as time went on, um, because they had said it'll be six weeks, it'll be eight weeks, it'll be 10 weeks. Oh, now you're in the four-month category, you know, and the doctors start to get quite concerned for you. And that's so off-putting and just terrifying, really. Not off-putting is not the right word. It's just terrifying when your doctors say, well, we don't know what to do, we have no ideas, and um, we think we don't know when you're getting better now, right? We thought you were gonna get better in six weeks and now we don't know. Um, so I just found I think the takeaway from that is that while I don't think acupuncture actually got me better, I think this idea of having someone who's really listening to you and seems to understand what you're going through, that there is medicine in that. There is psychological medicine in it. And I'm and I'm, you know, not a person who knows a great deal about nervous system regulation, but beyond my experience of it, right? In other words, I haven't studied it. That's not part of what I do. Um, but uh my understanding from others is that nervous system regulation is really key to healing from these kinds of conditions. And I think there's something really highly regulating about being listened to and understood. So I think that's I think that's key. And I experienced that both through this practitioner, but later through, I knew a couple of individuals who were acquaintances who had or old friends who had recovered or were currently had either long COVID or MECFS. And because I was able to connect with them early on, I had these uh this feeling of connection and of being understood. And I would say that that, you know, it sounds like it sounds like it's not medical, right? It sounds like it could be woo-woo or something like this, but I think it's really key to recovery. Um and yeah, so I so I found that in a variety of places. And ultimately one of the places I found that was through the CFS health program, which I'm sure some of your listeners are aware of. Or um, and and that it will again, I see that as a place where you know we are uh brought into connection with with others who are also living with you know severe fatigue, whether that's from long COVID or from chronic fatigue syndrome. And that connection and sense of shared, I, you know, I always think about it in terms of practical wisdom, you know, the things we learn through living and the and the sharing of that practical wisdom with one another. I just think there's a lot of juice there. There's a lot of recovery juice there, right? There's a lot of skill building and learning that we get from one another. So I think that's like one of the pillars for me.

Jackie Baxter: 26:30

What's that's that acceptance or or safety, safety through being accepted for who you are. It's not someone trying to fix you, it's not someone trying to put pressure on you or telling you who you should be or what you should be feeling or thinking or doing or any of these things, or telling you that you're, you know, it's just all in your head and you're making it up, or maybe you're just anxious, or you'll be fine next week, just you know, go to go to sleep. Um, you know, it's someone who is there with no agenda other than to just hear you. Um, and yeah, you're you're right. There is so much power in that. Yeah.

Kelly George: 27:05

So so that was huge. And then I think all I think a lot of the things that we, you know, collectively probably have heard before, but I think are, you know, are always worth reiterating. Once I realized that crashing was a thing, which took me a while to realize, like I didn't, you know, I right, you just you live through it. You you you live a little while, you're getting a little better, then you overdo it, and suddenly you learn that your symptoms can regress, that you can go from being able to walk around your house once to not being able to get out of bed again. And, you know, I ultimately I spent much of the first couple of years sort of partially bedbound and housebound, like on and off, you know, like some days being able to get out of bed, some days being able to leave the house, some days not. Uh, but it took a couple of months before I, you know, crashed, researched what a crash was. And for me, I'm a person with long COVID who also identifies as having had chronic fatigue syndrome prior to that without knowing it. Like having had a very mild case of chronic fatigue syndrome that that, you know, when I described my case to my infectious disease doctor, she's like, Yeah, that's what it sounds like to me. It sounds like you had chronic fatigue severe before, it didn't really stop you from living. Now you've been, you know, this virus has been introduced to you, and this is the one that your body, for whatever reason, right, just can't manage. And now you, you know, now you look like a person who has, you know, pretty severe chronic fatigue syndrome, you know, based on this set of symptoms. It was that was helpful for me. Like, and I know that we don't, you know, not everybody that has long COVID falls into that category. So it's really important to understand that. But I I found being connected to the wider community of people with chronic fatigue syndrome to be very helpful for me because there was more information there than there was about long COVID, because long COVID was new and chronic fatigue syndrome, while under researched, at least had been somewhat researched, right? There are a couple of decades, even though some of that research was not good and some of it was disproven. There was a well to draw from. And I feel like that was fortunate. I think that's one of the ways in which I was fortunate that that I quickly realized that that was the category I was in. I was in the category of long COVID folks who who really are reacting like a like a chronic fatigue syndrome case. And that I was able to quickly take the wisdom and research and the experts, right? I was able to find a doctor who specialized in this pretty quickly and then move forward with that framework rather than moving forward with a long COVID framework, which uh, you know, I think really frankly was more difficult, is more difficult to move forward with, honestly. And I mean, I'm curious how you think about that.

Jackie Baxter: 29:51

It didn't exist to start with either. Certainly I did not experience the blinking of the two for a long time. I think partly that was denial because you know, my experience of MECFS chronic fatigue was a couple of friends who I had who had been ill forever. Right. So, you know, I did not want to identify with that because that felt like a life sentence. So there was definitely an element of denial there. I don't know. It was almost like I didn't actually genuinely think that that's you know, that there were two things. I thought, well, long COVID is caught by COVID. So it's not, you know, it's not the same as that. And, you know, I think the more that we know, the more we understand that yes, it's caused by something different, but the manifestation of what shows up is actually very similar. Um, so the trigger obviously being different, but what shows up in the body, you know, whether it's the same or not is not a debate we're going to get into. Um, but very, very similar. So the fact that, you know, there is a lot of stuff out there previously is really, really helpful if you're able to tap into the right resources there. Whereas, you know, the long COVID framework, quite frankly, didn't exist for quite a long time because it was very new, no one understood it. And then people did start putting things together, but some of it was helpful and some of it wasn't. Um, so you being able to kind of tap into a lot of that stuff that was already there sounds like it almost gave you a little bit of a head start.

Kelly George: 31:17

Absolutely. And and you know, if you look into some of the what some experts say on the in this area, you'll see that there's some indication that if we catch chronic fatigue syndrome early, we have a better prognosis. And I'm not stating that as a any kind of researcher. Obviously, I'm saying, you know, I'm saying I've seen other experts say that. I don't think that there's anything, any hard you know, evidence out there that shows us that. But I do think, you know, for example, if in the US, if you look at the CDC page on um chronic fatigue syndrome, you know, it it will it says it's possible that early diagnosis helps prognosis, right? It's a possibility. And so I think that, you know, and my infectious disease doctor would share with me, you know, for the long COVID folks, we catch you earlier, that she would say. And so we sometimes think that we can maybe help you more because you know. No, right. Whereas people with chronic fatigue syndrome that was not triggered by long COVID, they just don't know they have, you know, they don't know they have it. They go around like the way I was for decades with this kind of like periodic fatigue that would come and go and I couldn't figure it out. And I would talk with my doctor about it. And she, they would take some blood tests and they'd shrug and say, we don't know, you seem fine. And, you know, I got shuffled around to a couple of specialists who also shrugged. And I had a couple of life instances where I was sick with a this or that, you know, an infection, and it just would go, you know, went on for six weeks, eight weeks. Again, the doctor shrugged. And it's like going through decades like that means that you're in my the way I frame it up is like you're constantly causing harm to your body without knowing it. You know, you're constantly crashing without knowing you shouldn't shouldn't be crashing, right? Like you should try do your best to obviously there's no, there's no avoiding crashes. Like this is a this is a part of the condition, but but you can do your best to learn how to navigate it, right? And um, yeah, I just feel like I was just, I feel very fortunate that I got that advice early on. That advice came both from you know fellow patients and from doc, you know, and from the you know, specialist. And learning how to navigate activity management is just in my mind, for me, that was the biggest thing is learning how to rest, learning how to get true rest. I know for a lot, I know a lot of people struggle with that. You know, a lot of people say, well, I'll lay down, but my brain is still going, my nervous system is still going. Um, I had been a yoga instructor in sort of, I say, like a previous lifetime, right in my 20s, I was a yoga instructor. So I I did have a little bit of uh background in like body and breath and you know, moving meditation at least, that I had this entry point into trying to still my body and trying to really give my body like true deep rest. And I think that also was fortunate, right? That was also kind of a leg up in some way. So I started meditating and started a very um disciplined daily meditation practice that I did just because it felt like the right thing to do intuitively, and not because anybody was telling me, like, you should calm your nervous system, right? But then retrospectively, now that I know more, you know, and I'm in the recovery space as a coach, now I see like, oh, so many people are doing this nervous system regulation stuff. And I was doing it just as a person who was interested in meditation and felt that it was going to help me body and mind and spirit and all that stuff. Um, so I think that was also a big component. It's like activity management, but it's also that finding the pathways to you know, emotional regulation, nervous system regulation, whatever that pathway is for you. It doesn't have to look formal either. Like for so much of my recovery, it looked like snuggling with my dog. Like that's nervous system regulation. That is what it is. Like dog snuggles are medicine also. Again, it seems like it could be woo-woo, but it, you know, it's it's not. It's the way we're wired. Um, yeah, to heal when we feel safe. Uh so that those were some elements that that were really helpful. Uh, but the thing, the thing I really, the thing that sticks out for me is the activity management. I think it's what a lot of people struggle with. And I think it's what I also, as a coach, enjoy helping people with because there's so many emotional barriers to allowing ourselves to rest and do less. And I think it's it's just such a worthwhile cause, yeah, to do less.

Jackie Baxter: 35:50

You know, we we talk about nervous system regulation, and you know, this is literally my day job. Exactly. Um, you know, and it's like, you know, we we talk about nervous system regulation being breath work and meditation and and stuff like this. And and it is, if you do it, you know, doing it in the right way. You know, it's always doing it in the right way, isn't it? But, you know, nervous system regulation isn't just breath work and meditation, it is also the little tiny things. It is making sure that you feed yourself, it is making sure that you are hydrating, it is wearing clothes that feel comfortable in your body, it is taking a moment of peace for yourself. It is, you know, it's it's these little tiny things as well. So, you know, I think we often get, you know, again, I I have this very um all or nothing personality, which, you know, trips me up sometimes, you know. And it's like if I'm not doing everything, it's not worth doing anything. And actually, no, that's not true at all. It is absolutely worth doing, you know, even if you're having a day that's a real struggle, like there are still things you can do. You can still take a few conscious breaths, you can still make sure you're drinking enough water, um, you can still snuggle up with your dog if you happen to like dogs, which I don't, so that wouldn't work for me. Um but you know, cut cuddling up with something that does feel good, you know, it's it doesn't have to be big things. And in fact, big things are made up of little things, aren't they? So, you know, it's it's finding that safety through whatever works for you. And, you know, you sort of did it almost intuitively, it sounds like, um, which is really cool.

Kelly George: 37:18

Yeah, yeah. And I'm sure some of it was also uh for sure being surrounded by, again, people in the CFS Health program and people who are go, you know, who were discovering for themselves what worked and and being surrounded by that culture of recovery in in some sense that definitely had um, you know, a positive impact on me.

Jackie Baxter: 37:39

Wanda you mentioned the CFS Health program. Um, are you able to just say a few words about what that is or and and what it does, just for anyone who hasn't come across it?

Kelly George: 37:49

So, I mean, you can find it online. CFS Health, um, I'm a mentor within the program. One of the wonderful things about their program is it's not just one person. They have lots of different coaches who specialize in lots of different areas, which I find to be really wonderful. So, for example, they have a um a coach who works just on movement. Um, and movement's one of the pieces that I think is easy to um neglect because of course we're all rightfully so, like terrified of crashing. But it's this idea that we can do, you know, as you said, even the smallest movements, right? Like if you're bedbound, sitting up once a day is your movement routine. Um, and so one of the things they offer is a coach who all of their coaches also have recovered from chronic fatigue syndrome. So you're guaranteed to be working with people who um have that inner wisdom. Um, but you know, it's a it's a recovery program that has, you know, lots and lots of um video resources, has a Facebook group for community, and then has group coaching calls. So you'll you'll go on, you know, you have a variety of calls that you can um choose from in any given week where you'll be on with a group of people and they'll be one of the CFS health coaches there to answer questions and and give support and practical wisdom. And um, I found it to be enormously helpful. I think it's important that people know these kinds of programs are out there and there's lots of different ones, and you can, you know, definitely find one that works for you. It is a financial investment that, you know, unfortunately isn't available to everybody. So I think that's another way in which I was very lucky that I was able, you know, I had lost my job, and yet we were in a financial position that I was able to join this program and be able to afford the monthly fee. Um, but there were also tons of free videos that CFS Health has on YouTube, and you can find those, and I found those really valuable. I mean, I followed the free stuff for like a year before I joined because for me, I knew I just wasn't, I didn't, I didn't personally feel I was recovered enough to get value out of joining the program until I had recovered a little bit and had a little bit more capacity under my belt. And so I just, you know, would listen to a little, um, you know, a little video in the background while I had my eyes closed and was laying down and maybe would learn a little something about how to find your baseline or um, you know, how to progress little by little, these kinds of things. So I found, yeah, just all of the um wisdom there to be very hopeful and and uh a lot of mindset work also, which I think is um I think it's worth talking about, like how tricky it is to talk about mindset in this uh in this space, because if you're not careful, it sounds like you're saying that you can think your way out of it, or that if people are still sick, it means that they're doing something wrong, or that it's their fault that they're sick. And I never ever want to fall into that trap. Um, and at the same time, um, if you're going through something incredibly difficult, no matter what that is, it will be helpful to celebrate tiny wins, right? And like it will be helpful to zoom out and see your progress over six months rather than over a week, because in a week you probably haven't made any progress. In fact, you meet you might feel worse this week than last week. Uh yeah, I think these mindset things are important for a variety of things. And and this is just one, you know, chronic illness in general is one area where our mindset tools can be really helpful.

Jackie Baxter: 41:26

And I'll make sure to put a link to that in the show notes as well, if anyone is interested in checking that out. Content, whether it's free videos or you know, coaching support or group support, you know, is is really valuable at the point when it is appropriate for you to have it. Um, you know, it's the right tools at the right time, isn't it? That's right, exactly. So that kind of movement towards, you know, into that sort of I'm fully recovered. Um, what did that look like? How did you get over that kind of like from illness to wellness, I suppose? How did you navigate the kind of moving out of the illness sort of stages?

Kelly George: 42:08

I think it's important to say that um there are a lot of false starts. I mean, didn't you find that to be the case? Like, aren't weren't there like I had a day like six weeks in where I thought I was recovered, you know what I mean? And it's like that, I don't, I just I I had a good day, you know, and I had never had a good day before. And so never having experienced it, I thought, oh, I'm recovered now. You know, I told people I'm recovered. I feel great, right? My mom celebrated. She she thought I was recovered. And then, you know, two days later I was stuck back in bed. So that happens. I I think it's important to normalize that too. Like I have to imagine that that happens to lots of us again and again, where we have not just a good day, but a good week, a good two weeks, a good month, right? And it is completely normal to um uh to ex to think it's gonna be like a light switch, that you'll just be recovered one day. And I just think it's important to say that I do not think it works that way. I think it's like much more fluid. And um, my own personal philosophy, and you d and like please uh have an opinion about it, is that I I can't really know that. I can't know that I'm recovered because I could get another illness that could put me back in bed again, unfortunately. Like I didn't know that I was gonna get COVID and end up sick for three years, and I can't know what's gonna happen five or 10 years from now, right? Like I'm not gonna have perfect health for my whole life. I can tell you that for sure, because that's that's a fiction, right? Like we all get sick, we all become disabled in some way in our lifetime. We maybe regain health, you know, we go back and forth. So I yeah, I just don't think it's black and white. I think it's important to talk about it in those terms. Um that said, life looks really normal for me now. In other words, I don't plan my activities. I don't have to monitor my energy. The only area where I still use some caution is is um uh cardiovascular activity. I know from trial and error that I can't do, like, for example, the reason I figured this out is like I can't do a long bike ride three days in a row, right? My my body will give me some symptoms with that. And it's simply because I haven't, I don't do that every day, right? And so I realized if I want to work up to that, then it ha I can't just do it all at once. My body happens to need some time to adjust to things. And so um, yeah, everyday life looks looks very normal in terms of the amount of activity I can tolerate. And I'm working on uh my fitness. You know, I'm working on running, I get on the treadmill and I do like a run walk for a certain amount of time, certain, you know, jump, but that that's just like I would have done before I got sick, to be honest. Um so yeah, I mean, I I I do all the, I know, I do the chores that I didn't used to do, and I do the childcare that I didn't used to do when I was sick, and um, and I do the exercise and I can play ultimate frisbee, but I am, you know, I'm cautious about it. I would the ultimate frisbee part, again, the the cardiovascular activity I have, I do have that little bit of caution still because I think it's called for. And for me, I still think like, yeah, this is recovered. I mean, the for me, it's what it's this is what it looks like. And I think we we should develop our own definitions of recovery that work for us and that we find motivating and that we find are aligned with our own, you know, values. And um, I don't think recovery looks like just one thing. I don't I don't think that's really fair uh to ourselves, uh, or maybe even to each other.

Jackie Baxter: 46:05

And I think, you know, I saw recovery as an opportunity to build the life that I really genuinely wanted. And that meant that I had a lot of the bits of me that were before, but also there were a lot of new bits that I had discovered or let out, you know, while I had become, you know, part of the recovery process for me was working out what that looked like. So I don't think you go through an experience like this and come out exactly the same person you were. So it would be very difficult to say, well, I am exactly the same as I was before, because I don't think you can be. Um but I also think, you know, as turtling in terms of physical activity exercise, um it takes time to build up fitness. Um, because, you know, I I hesitate to use the D word deconditioned, but we do become deconditioned. You know, it's not the whole story and it's not the cause, and you know, we're not getting to that, but you know, we do become deconditioned because we have to reduce our activity so far, you know, that we are deconditioned. So then when we start to move out of that illness and we are recovered, you know, you you don't hit the recovered button and suddenly go, I'm gonna run a marathon tomorrow because that's what I was doing before. You know, you you have to build up to that, and that that's as it should be. Exactly. So, you know, for me, recovery was the ability to do that, where I could push myself in a hesitate to use the word normal, but you know, quote unquote normal way, which is what a body should respond to if it is a healthy, regulated nervous system. Um, so you know, I I think it's recovery is a process, you know, life is a process, isn't it? Um, you know, you know, we we don't suddenly become recovered and everything is back to as it was before. Um, and I think where everyone sort of says they're recovered, it's it's it's slightly different for everybody. Um, you know, I thought, well, if I can't exercise, then I won't be able to say I'm recovered. Well, I I could exercise, but not to the level I could before because I had to build back up to that, you know, and the process after that was where I did then build back up my fitness over time. Um so, but you know, everybody is is different there.

Kelly George: 48:15

I also mentioned that I was a professor previously. And of course, as is often the case, we don't go into our previous professions once we've recovered. Um, so I'm no longer a professor, I'm now a coach helping people with their recovery, among other things. And I'm excited to be doing that work. So I work as a career and wellness coach. I help people with recovery from long COVID and chronic fatigue syndrome. I also specialize in helping moms who are, you know, not only recovering from these conditions, but who are also just burnt out as moms and need support from somebody who understands that role, right? What it means to be in that caregiver role and how difficult it is to navigate your own care and your own wants and needs while you're filling the caregiver role. Um, and I also coach people who are in higher education, as that was my background. So I have this kind of, you know, I took the things that I knew about and I put them into my coaching business. And I'm helping people that, you know, are in those areas of recovery, higher ed and being moms. And I think it's important to talk about also just because as we've said a couple of times here, we lose a lot of critical things through this condition. And isn't it so great to know that it's possible to build something new after that loss? And that, you know, all the things that I went through in illness, there were lessons there that I was then able to um harvest. That all led to me deciding, you know what, like what's really important to me is helping other people. That's what's important to me. That's what what uh that's why I was a teacher. I always said that you know, the the content wasn't the main thing when I was teaching. I was there to help people and I taught with love. And that was why I was in that room. And that strength and value of love was primary. And when I realized that, I decided, you know, among other things, you know, I had was considering a couple things, but coaching sort of came up as something that was gonna let me really lead with that value of love and helping. I just think it's so important to know that we can really rebuild our lives and build them back in a way that in some way is even better than the previous.

Jackie Baxter: 50:49

Um, finally, what advice would you give yourself? So Kelly, who's still unwell, what would you want her to know?

Kelly George: 50:58

Well, gosh, I mean, I wish, of course, I could just say like this is gonna be over, like this too shall pass. I wish we could all have a crystal ball that would tell us exactly what our future is, because I think one of the most difficult parts of long COVID and of chronic fatigue syndrome is this inability to look into the future, this feeling of deep uncertainty and the chaos of your symptoms and the chaos of losing these integral parts of your life. And yeah, I mean, I feel like that's a kind of magical thinking answer, but I actually think it's, you know, right, like the practical answer is like, don't overdo it. Or, you know, or you're gonna come out of this, you know, and you're gonna love your life even more than you did before, which is true. Or, you know, you're gonna learn so many lessons that you're you'll be able to teach others about and and you'll feel so good about that, right? But I think like what I really wanted and what I really like wish we could have is more of a magical thinking thing, which is like, man, I wish you could just know, right? Like, can't we like let's just acknowledge how much we wish we could just know the future and know if this is gonna be forever or not, or know if we're going to um, you know, gain this amount of capacity back, but not this other amount of paca capacity. Like that would be so comforting, I think, in some way, because you could then plan for it. And I think what this is all getting to is just my acknowledgement that what is one of the things that's deeply difficult about this condition or conditions like this is is the not knowing. And I think you know, on some level, the antidote that to that is just hope that it's possible and that if it's possible for someone else, it might just be possible for you. And that it's much more livable in my mind to have that kind of hope. And that's what I would want for myself, and I think that's what I would want for other people also.

Jackie Baxter: 53:12

Yeah, absolutely. And I think you know, recovery stories like yours, um, like everyone else who's shared their story, is is helping with that hope and that belief that as you say, if that person can recover, well, she's not that special. I mean, you are very special. Um, but you know, you know, it's like you know, if one person can do it, so can you.

Kelly George: 53:34

I couldn't agree with that more. Yeah, I'm all about like I'm not special, you're not special, they're not special. Like we are we're all human, we have our own set of strengths, yeah. And our, you know, and we certainly have different circumstances, but you know, on some level, I think do you think it's helpful to think, oh yeah, I think I think it's possible, right? I think it's possible. Yeah, I completely agree.

Jackie Baxter: 53:59

Kelly, thank you so much for coming along, for sharing your story, your wisdom. Um, I will make sure that uh any links you've mentioned go into the show notes. So if anyone wants to check out the health program or to connect with you, um, then they can check that out below. So yeah, thank you so much. It's been such a pleasure chatting with you. So thank you.