205 - Nadyne McKie: When Care Becomes Co‑Regulation And Recovery

We look squarely at the invisible load of caring for people with Long Covid and ME/CFS, why carers’ nervous systems shape recovery, and how boundaries and communication protect both sides. We share clear, humane steps that reduce burnout and build co‑regulation at home.

• Defining the carer role across partners, parents and adult children
• Why caring is invisible, isolating and exhausting
• Boundaries that prevent “fixing” and conflict
• Fluctuating illness, hypervigilance and control
• Co‑regulation and why a calm carer accelerates recovery
• Practical resets that aren’t a self‑care to‑do list
• Sharing the care, advocacy and admin load
• Vicarious trauma in carers and how to spot it
• Simple communication that honours both sets of needs
• Giving and receiving grace while recovery unfolds

Links: 

Connect with Nadyne: https://nadynemckie.co.uk/how-I-can-help-you 

Our previous episodes: 

"Embracing Kindness" https://www.buzzsprout.com/1835170/episodes/15968082

"Empowering through Compassion & Play" https://www.buzzsprout.com/1835170/episodes/16104655

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

(music credit - Brock Hewitt, Rule of Life)

Chapters

• 1:51 Welcome Back And Today’s Focus
• 2:50 The Invisible Load Of Caring
• 4:03 Defining Who A Carer Is
• 9:11 Boundaries And The “Fixing” Trap
• 18:10 Fluctuating Illness And Hypervigilance
• 25:18 Communication And Knowing Your Needs
• 30:48 Why The Carer’s Nervous System Matters
• 36:40 Co‑Regulation Explained
• 42:39 Practical Ways Carers Protect Energy

Transcript

Welcome Back And Today’s Focus

Jackie Baxter 0:56

Hello and welcome to this episode of the Long Covid podcast. I am absolutely delighted to welcome back today Nadyne McKie, who has been a previous guest. We reckon it was a bit over a year ago that we had spoken. And yeah, Nadine has actually been, I think, twice on the podcast. So I will link those episodes in the show notes because she's awesome. Nadine is now working as a specialist recovery-focused psychotherapist at the Long COVID clinic with Dr. Benita Kane and her team. And I'm sure a lot of the knowledge and wisdom that you share there is going to be part of what you're going to share today. So today's topic of conversation is carers, caring for the carers, the role of caring in long COVID and MECFS recovery. So enough of me. Nadine, it's so good to see you. Welcome back.

The Invisible Load Of Caring

Nadyne McKie 1:48

Thanks so much for having me back, Jackie. It's always such a lovely pleasure to speak with you about such an important topic. And you know, we were just speaking a bit earlier about what it means to be a carer. And I think one of the things that's really important with caring for long COVID is that it does, you know, we need to take into account that the experience of the carer often in some ways mimics the experience of the person with long COVID because the caring side of things is often also invisible, you know, and we've got this condition that is largely invisible, also. So we're looking at how the carers for people with long COVID are also treated themselves, and that's a really important point to make, I think, for those people that are caring, because the invisible kind of load of caring for somebody is that it it's exhausting and it's often very isolating. And this this in itself kind of mimics some of the symptoms that people experience when they do, in fact, have long COVID. So I just think it's an important point to make from the start that that in itself needs to be taken into account. That hidden exhaustion.

Defining Who A Carer Is

Jackie Baxter 3:06

Yeah, a hundred percent. And um, Nadine, you yourself have had this experience of caring for someone with long COVID because you have your own recovery journey from long COVID, but your son has also been ill with it and now recovered. Um, but you have that unique perspective of kind of being the ill person and also that side of being the carer, which I think, well, that was why I asked you to do this, because I thought you were going to be the perfect guest for this.

Nadyne McKie 3:37

And and it's quite, you know, is as many listeners will will totally have the experience of um, because this is so well known in this area, but as a parent caring for a child with long COVID, that in itself brings its own unique set of challenges because you're taking on so many roles and often having to completely change your life circumstances in order for this to happen. And and of course, your children then become the main often, they are of course the main focus of your world, but but then it's like they are the sole focus, and that in itself can have knock-on effects in in other areas of family life or professional life, social life, etc. So there's a lot of um of different aspects to to what caring for somebody with long COVID actually means day to day and in real life, not just the the kind of stats, and we're starting to see some of the stats come out, and we know that this is impactful on mental health of carers. That's plain to see, and it would be really nice actually to have some more research done in this area because I think it is quite a unique area in terms of um long COVID still being under-researched and underfunded in that area. But caring for people with long COVID is a major, major part of the recovery journey because there isn't that well-trodden path of treatment. So people are often left in the care of family, friends, or you know, sometimes there are there is outside support coming in, but more often than not, actually, this is this is very much like a relational journey, you know, and that's part of the experience of having long COVID and and and needing care, which in itself is a real challenge for some people. It might be the first time in their lives they've actually needed care, and then to experience that and be the carer. Yeah, that's quite it's a journey, as they say.

Jackie Baxter 5:40

It is, it absolutely is. And like I think one of the things for me that I found so difficult, um, as someone who had always been faithfully independent and totally capable of just handling everything, which is you know a different story in itself, isn't it? But you know, exactly, you know, the kind of accepting and asking for help was something that I found very, very difficult myself. Um, so I think again, we can probably get into this too. Before we go any further, what do we mean by a carer? Because obviously a carer, you were talking just then about, you know, a parent caring for a child. And, you know, as you very rightly put, a parent will care for a child whether they're sick or not. But when they then have a sick child and a child to sick kind of longer term rather than just having a cold for two days, you know, that is one kind of type of caring. And then we also have the situation where partner becomes a parent, um a carer for their partner, partner and partner. Um, you know, so my partner caring for me, for example, or that situation of an older child and parent, but in an adult relationship, which again I'm sure we will come to. So there's all these different kinds of um iterations of being that carer, isn't there?

Boundaries And The “Fixing” Trap

Nadyne McKie 7:11

I think you've hit upon something. I know we kind of joked and said, Oh, I joked, anyone said, Oh, that'll be another podcast, but there is something about the loss of independence that then creates the need for care, and that's not easy. And of course, with children, younger children, that's that's already there in terms of you know, we don't expect children to be able to look after themselves, of course not, they are vulnerable and they are by and large should be ideally you know looked after by the parents, not the other way around. However, then when we get into like the adult children of parents who maybe through uh the circumstances that they experience because of long COVID, you know, loss of professional identities, loss of career, loss of homes, even, loss of relationships, they often find themselves back and the need for care. You know, let's add that in, that's where I was going with this. That the limitations on what was once of probably a very independent life then require support and care. And that's not easy. So it's it's not easy for the the person experiencing non-COVID, of course, they're the ones going through the many symptoms, etc. But it's also then it opens up a whole world of new, you know, what does it mean to be the carer of your child who has left home perhaps many years before, and then suddenly is back at home with their parents. So there is a lot to it. But I mean, by and large, a a carer is is pretty much like the kind of not the it's not a dictionary definition, but they are the scaffolding, you know, they are the foundation of help and assistance and support, whether that is practical, which it often is with long COVID, emotional again, find me a carer who's not emotionally supporting or trying to emotionally support the person that's ill, and often that advocacy as well, that kind of conduit between the patient and the healthcare teams, or just you know, trying to find out information. So they become the researcher often as well, and they're trying to navigate, you know, PIP services, benefits, other professionals, where to go to try and find additional support. So you've got this role that is in itself almost a full-time job, and that in itself is a huge task to take on. And of course, at the heart of it is the desire, or perhaps for some not so much desire, but you know, the need for support, which is not easy to give necessarily or to receive, depending on people's circumstances. But this is often stuff that I come across when I'm working with people is how easy is it to receive support, how easy is it to ask for support, how easy is it to give support, and how easy is it for you to support yourself in that role as carer? Because that's often the last kind of the last thing on any carer's mind is their need for support as well.

Jackie Baxter 10:22

Yeah, and that's why we thought this would be so important to talk about today, because you know, the role of a carer, you know, you've just outlined a handful of things, and I'm thinking, whoa, you know, like that that's a lot for anyone. And, you know, bearing in mind that this person who's taken on this caring role, you know, they're probably doing it because they love you, but they didn't ask for it, they didn't expect it, and they're probably also trying to hold down a full-time job underneath that in order to financially um hold on to support. So it's it's a very, very challenging role. Um what where where does the role of carer end? And where I'm going with this is I'll give you an example of my partner, for example, who, you know, he's he was wonderful. He was really great, and he provided me a lot of support, even though I didn't want it a lot of the time. You know, I was definitely not an easy person to support. Um, but there came the point where he was trying to fix me by telling, you know, he was trying to tell me what to do. And I imagine that everyone's relationship with their carer and you know who they are and their circumstances, this is probably going to vary. But when where we tended to clash was when he thought he knew what I should be doing, and he would tell me, go and do this, or just do a breathing exercise, just do this, just do that. And that didn't go down well. That created more tension between us. I would then become more activated, fly off the handle more, make the situation worse. And I probably wasn't very kind to him in those situations either, because you know, I felt like he was interfering. So those kind of boundaries of where where does the carer's um sort of role end? And where do they need to say, actually, this is not my role here, my role is a carer of support. This is where you need to be working with somebody else, or you need to be asking someone else that question, that sort of thing.

Fluctuating Illness And Hypervigilance

Nadyne McKie 13:12

Uh yeah, totally. This is a really difficult area, and it's so subtle and nuanced, and obviously, it's it kind of glides into relationship dynamics and maybe what's you know how we feel about receiving support, as I was saying earlier. But I think generally speaking, it's you've hit upon something really important. You know, a carer cannot be everything, like no one person can be everything to another person. So, in that regard, when we hit upon things like uh telling people what they should be doing or thinking we know of another's experience, this becomes really tricky, especially when you might be the parent and you might have your own thoughts around around long COVID, even and what it means. And and let's face it, it's it's not easy when we have long COVID to feel like we're being understood or believed in our experience, because by and large, you know, we look okay, and and then for the first time, uh say, like an adult parent of a child coming back to the the home, the family home, needing care, they might see for the first time actually, oh okay, they they were, you know, this really is a thing, and it does require care, but that in itself might be a real process to get through. And it might just be, oh, you need to just do this, or you need to just do that, etc. etc. And we've all heard these things, you know, time and time again. All these well-trodden paths of needing a nap, or you know, just getting out in the fresh air more and just do some yoga and all these things that just be more positive. Be more positive, yeah, yeah, exactly. Just positive to think your way out of this, and of course, the intention usually behind these well-trodden paths of cliched phrases is one of care, but it's not well received when you've been experiencing long COVID, because we know if that worked, we would have done it straight away, of course. Because most people have tried many, many things before they get to the point where they actually require a lot, you know, maybe constant care. And that's something really worthy of taking into account. Like, how do we navigate the field of communication? Because really, what we're looking for with with care, you know, somebody to care for us is somebody to understand our experience, and not necessarily to step in and say, This is what you should be doing. Of course, what I'm not touching upon, probably because it doesn't come into my realms of like what I do, is is like the medication side of things, where of course that can be useful because the practicalities of long COVID can be that you know, we need reminders of medication, etc. Um, but I think it's it's it's when we step into thinking we know better than the person themselves that it becomes a little bit tricky. And and that's where I think the role of carer needs to kind of be reassessed, should we say, and and at that point, as you say, you know, and I I work with people that are caring for people with long COVID, it's not just people with long COVID that this affects, it really does have that ripple effect, and and even carers of people with long COVID will will no doubt inevitably end up feeling fatigued in some way and exhausted, and and with some of the kind of symptomology that we we also associate with long COVID because of the rigours of what they're going through themselves. So I think yeah, it kind of stops at that place, in my opinion. Now, other people might beg to differ, and there are lots of different roles that carers take with people, but I think one of the things that makes caring for someone with long COVID quite complex is that it is a fluctuating illness, it is unpredictable, it's not just about physical tiredness. Um, and and so a carer can often live in a state of kind of anticipation of crashes or symptom flares, and in that regard, they become quite quite hyper-vigilant, and they may then step into that role of don't do that because of X. And ideally, what we need to see within the recovery process is that the the person themselves starts to, it's not about taking responsibility for yourself, it's about starting to understand understand yourself better. And I really want to make that distinction because that's a really important nuance, because one of them means that you are being there's a lot of pressure on you, and the other one comes from a much more empowered space of getting to know yourself better, because I I tend to describe the recovery journey as a kind of like recovery of you as well, and that's often something that comes out of when I speak to carers, you know, is that things change for people when they do start to recognize stuff for themselves, and that needs supporting, so it's about being almost like a supportive, containing space for this person to recover in rather than trying to do the recovery for them.

Jackie Baxter 18:41

Yeah, I I think that's such a good point, and uh, you know, it's it's really interesting what you were saying about the change of relationship as well, because the relationship that I have with my partner is very different now to what it was before I was ill. And I would say it's for the better. I haven't asked him that, but um, I I think you know, we we communicate better, we talk more, I'm better able to tell him what I need and what I don't and when he's a problem and when he isn't, you know, and then we can talk about it. And I think, you know, that was what I was thinking as you were talking just then. So much about this is about communicating. And, you know, when we're ill with something like on COVID, communication can often feel very difficult. Um, so it's finding a way to make that work for the person without it being too onerous, but also so you as the carer get what you need in order to support them best. Because I think, you know, if someone had asked me while I was ill, what do you need? I think to start with, I would have found that a very difficult question to answer. But I think over time, as like you said, I got to know myself better, I got to understand my body and my needs and what I needed and what I didn't, um, that it was then much easier for me to start to understand what I did need and then to be able to communicate that to somebody else. This is what I need, this is what I don't need. But I think if someone had asked me that question much earlier on, even though I would have found it very difficult to answer, I think it would have been helpful to start thinking about it. Because I don't think anyone had ever asked me that in my entire life before. What do you need? And it's now something that I ask myself like every five minutes, what do you need? Um, and it's it's like it's it's just a life thing now, and it's one of the best lessons I've learned, I think.

Communication And Knowing Your Needs

Nadyne McKie 20:33

But I think you know, you hit upon again really, really important thing. Lots of people don't know what they need. So then being asked, Well, what do you need? What do you need from me, you know, if you are the carer, can put undue pressure. And when we look at when it's you know caring for children, they don't they can't always communicate their needs, they don't know them. So there's there's definitely an element of a carer's job being trying to find a balance between the natural hypervigilance of somebody that you are caring for and that you love and care for, and staying in a space that is a very tricky balance because we need to hold a lot of unpredictability unpredictable symptoms, so a lot of uncertainty, but we also need to hold hope at the same time for the person, and within that, we need to kind of step away from this um kind of idea that we can somehow cure, you know. So a carer's role is not to cure, but it's to communicate and support, and that in itself for a parent can be really difficult to do that because you I mean to find me a parent out there who wouldn't want to take away the suffering of their child, like it in any way they possibly can, and so that in itself takes its toll on caring for a child or a young person or you know, even your adult child, because that that kind of parental uh role kicks in, and you just want to make it better, so you you can end up stepping into I know what you need territory, and that's a difficult one. But I think the other part of that is how then do carers kind of care for themselves in the way that that you were kind of saying about you know your partner kind of asking you what you need. Does he ask him himself what he needed? Maybe he does now, I don't know, but that's often not a place that a carer steps into. They they are so focused on looking after and supporting the the person that they're looking, they're caring for that they don't ask themselves what they need. And then we get into this um kind of understanding of how that impacts the recovery of the person with long COVID too, because what we end up with often is two completely you know, fatigued, depleted people both trying their best to kind of fit the roles of, well, I am trying to get better, I'm trying to make you better, you know, and how that then molds together. And and it can end up with a lot of sorry to say the words, but nervous system dysregulation, which is actually the opposite really of what we're looking for in recovery situations. We're looking for as much regulation as is possible. Within the constraints, obviously, of this condition, and with also in the constraints of what might be a quite uh challenging, shall we say, like relationship dynamic as well. So there's an awful lot for carers to take into consideration. But I really want to come back to why the carer's nervous system matters, if I may. And I don't know if you've got anything to say about this, Jackie. Maybe your partner might not like it. I don't know.

Jackie Baxter 24:09

Yeah, I mean, I think, you know, you're so right. I think the last thing that you said to me before we hit record was I shall paraphrase here, um, but you know, the carer's nervous system is important because the better regulated the carer is, that they are then going to have that more regulating, co-regulating presence for the person who is unwell. So, you know, we may maybe maybe you could explain co-regulation and then why this is so important in recovery that we take care of the nervous systems of both sides of the equation.

Why The Carer’s Nervous System Matters

Nadyne McKie 24:46

Well, something that, you know, you probably heard it on another podcast because I end up saying it a lot anyway, but I'll repeat it for those who may not have heard me. Um, is that the best thing for our nervous systems as humans is another person. But also the worst thing for our nervous systems is another person. And what I mean by that is human nervous systems regulate in relationship. We don't operate really well in isolation, and so a person, another person, somebody who cares for us, can become a very regulating source, you know, of co-regulation. So that that creates that state where we feel safer around that person, and our nervous system can downregulate and we feel better. And that is, of course, the ideal conditions or the most effective conditions for recovery to take place. Having said that, that's not easy if you're caring for a person with long COVID because of the kind of hidden exhaustion and the invisible load that that person is carrying of being vigilant to the needs of another person. So we're looking at quite a lot of very complex stuff going on, but by and large, what we're saying is the more regulated the carer can be, the more effective recovery will be for the person that is unwell. And I I don't mean effective in that regard, but I mean that person needs to have ideally as much regulation as possible. So when they are when the carer is dysregulated, it's going to affect the person with long COVID and vice versa. And in that regard, it's kind of the carer's responsibility to help themselves. I know you you said a couple of times, like you know, the oxygen mask on first kind of analogy. But what we're really saying is a calm presence can really reduce the threat signals that impact and dysregulate a person living with a long-term chronic health condition. And that's a set that's a really important aspect. So things like if we ourselves as carers are anxious or if we are overwhelmed with what we're doing, that can unintentionally, and I'm not saying anyone's setting out to do this, but it's unintentionally increased dysregulation in the person we're looking after. The other aspect to this is what I want to say. Remember, no one's perfect, okay? No one needs to try and be perfect either. No one is calm all the time. And let's face it, living in and around long COVID is a challenge because it is often dismissed. We are often advocating for children, uh, adult children, people we love, you know, we are often that person that has to kind of stand up for them in situations where they can't do that for themselves. So it does require an awful lot. But what that therefore means is we ourselves, as carers or the carers of people with long COVID, need to take time to recover from the work, the load of caring. And that can be a very tricky one because it might be that there isn't that's that space available for that. But this is where that analogy, you know, oxygen mask on first. It is about recognizing the need to slow down, and and that's why I end up obviously working with a lot of carers because they themselves may find that they are not aware of their own needs, and so we begin this journey of exploring that and and recognizing what the body is signalling and when that signal occurs, and what triggers that, and all these different kinds of fun things that go on within recovery focused therapy. But what that means for someone as a carer is that they can offer safety to themselves and therefore safety in the nervous system sense to the person they're caring for. That is co-regulation happening, and that's really important aspect to recovery.

Jackie Baxter 29:23

Yeah, and that that has to be the most important role of a carer, right?

Nadyne McKie 29:30

It does need to be, yeah, because we need well, ideally we need to support carers, and this is a whole other story, right? Where is the support for the carers? But we need to support carers so that they have opportunities, time, space, and support themselves to regulate themselves, because that is part of the treatment. And that is why, you know, the within the work that I do, that I do often end up working with carers because that aspect to it, especially when it's parents of children, you know, that's a very important part of the story because children are absorbing everything that's going on around them, you know, and it's this is not to put additional pressure on parents, by the way, you know, because they really don't need any additional, but it's just to emphasize that the focus must at some point be on their own recovery in order to assist the recovery of their child.

Jackie Baxter 30:30

Yeah, absolutely. So what can carers do to safeguard their own energy, their own nervous systems, to therefore be able to be as regulated as they can, to then be as supportive as they can for whoever it is that they're caring for?

Co‑Regulation Explained

Nadyne McKie 30:50

I I really recommend getting support for themselves, you know, having a that might come in the form of a friend, right? An external friend that they can go and have a cup of coffee with offload, that they can have the emotions that they're feeling that maybe they can't necessarily show when it during the time that they're caring for a person. And there will be lots, and they are all valid, you know, anger, frustration at having to be in this role of it changing their lives, all of this stuff is completely valid, and there needs to be space for that. If we don't give ourselves space to feel those things, by and large, those things will start to emerge somewhere, and often it's either at ourselves or at others that we maybe don't ideally want to be doing that to. But it's stuff like looking out for that increase in emotional load, you know, that that kind of understanding, which is often the case when we're with long COVID recovery, we start to see that the things that we may not have necessarily thought about that might require recovery from, such as social interaction. Yeah, many people before long COVID and experiencing long COVID had no idea how much that took out of our systems. That requires immense amounts of energy, which we need to prepare for and recover from. That's exactly the same with a carer. You know, the caring load itself requires recovery from it. So it's about creating some space where you can have that space just for you to refocus on yourself rather than the obvious focus of a carer, which is on the person who's ill. So I think that that is one thing. There are obviously going to be lots of you know practices, etc., and some of those can be really, really helpful. And I'm not denying, you know, being able to get in touch with your body via the breath, right? And you know this because your breathing workshops and courses, that's an important part of accessing our nervous system, but it's also really important to say that just because you have a long list of things that you need to do that's apparently good for your nervous system isn't really gonna be helpful, okay? So it's like being really choosy about what feels comfortable and what works for you, not putting undue pressure on yourself with this huge list of, oh, I've I must meditate for you know, I must be mindful in this moment and do this, and I've got to go and cold plunge and I've got to do this. I'm not saying don't do those things, I'm just saying don't give yourself an additional burden of a to-do list of self-care activities. If you're already burdened, burden's a bad word for this, sorry, because so many people feel like they're a burden on someone. But I mean like don't do it if you're already challenged, okay? And find me a carer that is not challenged in that way. You know, there's not there's limited time, so it's about finding something that works that can be done for you in maybe a short period of time. It's about taking like those micro breaks just to reset a moment when you go and stand in the garden, get in the car, have a scream. That is one of my favorite things, I must admit, just to let that secret out. But the most important thing I think is in an ideal world, we'd have an awful lot more support for people caring for others. We don't at this time, which is a great shame. But that recognition of what you're doing and the need to prioritize yourself and your own well-being is super important. So, in terms of regulation, I think it's additional support for you is recognizing you need care too.

Jackie Baxter 34:43

Yeah, and you know, I mean, I'm I'm an overcommitter. I did exactly the same thing when I was recovering from long COVID. I found extra things that I could do that were good for me. So I added them to the list. And you know, some of them were really great, some of them were great in the moment, but trying to do all of them all of the time just felt like, as you said, another thing that was on my to-do list that was stressing me out. And I think like so many of us do this, you know, we we do overcommit. Um, you know, I'm a people pleaser. So, you know, if you know, in that kind of caring role, I would be a nightmare. Um, because you know, I would be trying to put other people and first and completely forgetting about myself. So I think it's really understanding again, it's that you have to take care of yourself in order to be a good carer. In order to do your best for this person, you have to do your best for yourself. And um yeah, I I love what you were saying about um we take on things and we're caring for someone because we love them and because we want the best for them, and that's great, that makes you a wonderful person, um, and you're gonna be an amazing carer. But I think what we also do because we just get on with it, and you know, I think this is a very British trait, but I think it comes up elsewhere too. You keep calm and you carry on and you just keep going and going and going. And what we often forget is to acknowledge that we wouldn't have this any other way because we love this person, but it's really freaking hard. And you know, that sometimes you do want to scream into a pillow and you want to throw things and you want to swear at people and you wish it wasn't this way. And it's totally okay that you feel that. And it's really important that you allow yourself to feel that. But as you were saying earlier, maybe in a space that is away from the person that you're caring for, because you know, it's very likely that they already feel like they're a burden, all of those things that we do feel in that space.

Nadyne McKie 36:43

Well, that it's it's a challenge, isn't it? I mean, it's a challenge enough to have long COVID, and then to add the additional, as you were saying earlier, you know, so many people with long COVID are people that are very high achieving, their lives have been fully independent, they've been running marathons, they've been running companies, they've been parenting and holding down full-time jobs, all this stuff, you know, people that are full of life and energy before, and this is a vast contrast for them. So relinquishing an independent life to be cared for is in itself incredibly challenging. And then you add in the aspects of like what happens in to feel like a burden, and and you're so right, you know, caring for somebody is inevitably gonna fall to somebody who, you know, it requires great great amounts of empathy, huge amounts of selflessness to care for somebody full-time, which many carers do, completely unrecognised, unpaid usually as well, and vastly holding an invisible role in this in this in this experience, that is inevitably and justifiably and completely understandably going to elicit some emotional responses. How could it not? And they are all valid. And this is where having space for that is so super important, because giving yourself permission to feel exhausted, frightened, frustrated, resentful, angry, to think I've got needs too, you know, where's my space for this? This is all stuff that's very important. To rest without guilt, I mean, whoa, that's a whole podcast in itself, right? Let's not go there just yet. But you know, to think, yes, I need practical support as well, you know, to to share the care is a really important aspect too, where where you can sharing, sharing is caring, as they say. But this is really important for carers, and and so that they themselves have space for their own, and it might be therapy, but it doesn't have to be. It might just be a very trusted friend, it might be somebody in their lives that they can go to and just let things out, you know, that they might be holding in, because that in itself is another tool for regulation. That is how we regulate that nervous system support, is is you know, part of it is allowing ourselves to feel what we're feeling and not try and suppress it and hold it in because we fear the feelings. I hope that's kind of come across in terms of why carers need care just as much as the people they're caring for, and why also that is such an important, I would say essential part of recovery. You know, if you're caring for somebody who's recovering, you need to care for yourself too. Is that it's a very important part of their treatment and their recovery.

Practical Ways Carers Protect Energy

Jackie Baxter 39:45

Yeah. Yeah, because you hear hear about care of burnout, and you know, it it you you can, you know, when you've literally just written the book on it, you've just described exactly why this happens and why it is so important that that person in the caring role is able to take care of themselves and also probably allow other people to take care of them too, coming back to that, how difficult it is to ask for help thing, you know, that the carer knows when to outsource, when to say, do you know what it's worth actually getting someone in who might be able to clean my house?

Nadyne McKie 40:19

Yeah, or just ask for help of some, yeah, exactly.

Jackie Baxter 40:22

Yeah, asking a friend or another family member and just saying, you know, this is what I need. Can you please help me?

Nadyne McKie 40:30

And I think it's important to you know, going back to almost the first thing I think I said, which is this is this is largely invisible, right? Care is largely invisible, carers are largely invisible, long COVID, the experience of it is largely invisible. And that that also is reflective of what carers can experience, which is the kind of invisible weight of vicarious trauma, you know, from looking looking after somebody who's going through something that they themselves are experiencing. Um, you know, there's so many different kinds of traumas within the long COVID experience, being dismissed, being left, etc., feeling isolated, alone with something that is uncertain and unpredictable, all these things over long periods of time can create that vicarious trauma response, which isn't always recognizable immediately unless you know what you're looking for. And this is why it's so important that carers have their own recovery, you know, as something that they're looking after as well, and that is you know, is equally important as the caring that they're doing.

Jackie Baxter 41:38

Yeah, absolutely. Um, so I think, yeah, I think we all need to just really celebrate those people who are, you know, who are helping, you know, people who are experiencing things like long COVID, MECFS, you know, it is such a difficult thing to go through. And I think we often get so stuck in that experience. I didn't really understand the role my partner and what he had gone through until I had recovered. And I was able to look back on it and go, yeah, that wasn't nothing for him. You know, it wasn't the same experience. But he also had a lot of life changes during that time that he went through in order to support me. And I didn't really thank him at the time, and I do try to remember to do that now. Um, so I think you know the role that those carers are playing is is absolutely huge and uh absolutely should be celebrated.

Nadyne McKie 42:29

Yeah, absolutely. It's it's it's a key part of recovery, and they are so unrecognized for what they do, and and you know, that goes for the everybody kind of working in and amongst, to be honest, because you know, it does take a village or a community or whatever you want to see, this this does require um care and support, and and that can't just be one person in isolation, because as we know, nervous systems heal in relation.

Jackie Baxter 42:59

Totally. So I think just very quickly, finally, you know, we've talked a lot about the role of the carer and um what the role of a carer isn't, um, and what you know the importance of caring for that carer, and a little bit about how they can do that. And I'm not asking this because I want to put more pressure on the people who are ill, because they have enough pressure on themselves as it is. But what could someone with long COVID with MECFS do to make things easier for their carer? And I'm thinking this is maybe more along the lines of communication rather than like not asking for the help that they need. Um, is is is there really little easy things that people can do to help their carers out?

Nadyne McKie 43:46

It's a really good question, and I'm struggling with it a little bit just because I think the experience of having long COVID itself is such a challenge that it's often not easy to recognize what uh what other people might need. Or it could be that the focus is on so much of not being a burden that we then don't ask for anything.

Jackie Baxter 44:11

Exactly.

Nadyne McKie 44:11

So I think it's it's again, it's a little bit like that that kind of feeling of having to discover or rediscover, maybe that yes, it's okay to have needs, and then how do you communicate those? And and that in itself, it's not an easy journey for people because we might find that actually it's hard, the people, you know, people aren't listening, or maybe the way we're communicating isn't well um understood, or perhaps well received, and and and these things are obviously very nuanced, but I think it's by and large the way that people that are experiencing long COVID can help the carer is is is just by recognizing that it's okay to have needs, and it's okay for the carer to have needs, and it's how we communicate those needs that that can be very helpful in terms of coming back to nervous system regulation, you know. If we can try and remain open and understanding of another's experience, that's the most important aspect. You know, this it's understanding that somebody else could you know, having that empathy for somebody is is all well and good, but if we're not looking after ourselves and voicing our own needs, uh then that empathy can turn into burnout. So we need to kind of have both of those things, it's all a tricky balance. So I would say well done to anybody who is caring for somebody with long COVID, and of course, the people with long COVID are just doing their best most of the time to communicate in the way that hopefully will be understood. So it's important for everybody around them to understand that that lived experience isn't easy to communicate and can be difficult to understand. So let's give that person. Some grace.

Jackie Baxter 46:05

Yeah. I I think that's beautiful. You know, it's that that grace from both sides, but also not being afraid to communicate your needs or to discover what they are, possibly for the first time. Sometimes.

Nadyne McKie 46:19

Yeah, possibly for the first time. Exactly.

Jackie Baxter 46:22

Amazing. That sounds like a great place to leave that. Nadine, thank you so much. You are absolutely awesome. It's so good to reconnect with you and thank you so much for giving up your time to share so much of your wisdom. So thank you.

Nadyne McKie 46:36

Thanks so much, Jackie.