S2 EP1 - Okay… So What Now?

The podcast is back. No big relaunch, no perfectly mapped-out season — I just felt like talking, so I hit record.

In this episode, I’m reflecting on the last couple of months: navigating another ME/CFS relapse, relationships, motherhood, asking for more support, trying to build community, getting back behind the decks, remembering what makes me feel alive, and figuring out what the hell work and life are supposed to look like from here.

I don’t have a neat lesson or a five-step plan. I’m very much still in the middle of it.

But maybe that’s the point.

I also share where I’m heading with the podcast this season, and how these conversations will weave into my writing over on Plot Twists & Flipping Scripts.

Easy, breezy, slightly rambly. Just me talking about life as it’s actually happening.

Transcript

SPEAKER_01 0:19

Hey guys. Welcome back to flipping the script with myself Jim. I took a break, I don't know, it was probably about two months ago now that I decided that I was gonna take a bit of a break. And um Yeah, and then I was sick in amongst it all, and then I just realized that I'm probably in another chronic fatigue syndrome relapse because I just my energy levels weren't getting back up to where they were before I got sick. So yeah, um I mean it's just a good reminder, really, I suppose, that I do have chronic fatigue syndrome. I do tend to kind of forget that and push on through and try to do all the things. Probably a good factor in how I got this in the first place. But yeah, um it's just one of those things that you're constantly figuring out where your kind of levels are, um and you know, what works for you and what doesn't work for you. So yeah, um and in saying that um I've kind of it reminds me, you know, that I need to live my life in a way that best suits the condition that I have. Um and so that means I think not doing trying to do things so um, you know, trying to do weekly episodes on here. So yeah, just going a bit more organically, um recording conversations as you know, interesting people and conversations come into my life, um, as well as, you know, when I see something, you know, seeking it out and you know, seeing if people are open, but um, yeah, a bit more organically, a bit more feeling the fire kind of and yeah, we and honouring that, um, yeah, when you kind of get that spark to want to do something and share something, do it that way, versus forcing basically. Um and that's another big probably lesson in my whole life, but um, especially with chronic fatigue syndrome, for those of you that don't know what it is, um, or have never heard of it, um, it is an actual thing. Um there's actually a lot of people that have it. It's I'm actually gonna Google the um actual, you know, blurb on it kind of thing. Because I know what it means for me, but um, yeah, it's uh it's a long-term illness um causing fatigue, really, in the name, mostly. And this is not a tiredness that you can just sleep off, um, you know, have a good night's sleep and sleep off. It's just a everlasting well, feeling like it's an everlasting thing. Um, I think the criteria is six months um that you've been experiencing these symptoms. So for me, when I think back after I realize kind of maybe that's one factor in my overall health picture, um, because you know, generally, well not generally, but a lot of the time these things, you know, there's a lot of factors involved. It's not just you know, fatigue, it's like hormones, it's you know, it's whatever for some people. Um so yeah, M E, CFS, um yeah, a it comes up in a lot of women though. Um so also post exertional malaise. So basically, if I exert myself too much, physically or mentally, I just feel like my head is like in a vice if it's mental exertion and then physical, it just takes a long time for me to recover. Say, like, I don't know, if I went on like a four-hour hike or something, like it's just yeah, it's I'm not saying that I'm never gonna be able to do that. I know I will, um, and I know I can. Um, it's just for me, I know it's like working my way back up to those types of things, and then honouring when I am, you know, not able to push myself any further. Um, it's actually called pacing, um, is the technical term for it. Um, and also just whole body soreness, um, tension for me as well, um, and those tension headaches. But um, yeah, it it's a wild ride. And, you know, probably one of the hardest parts for me, and any aspect of my life, actually, if I think about it, is like exerting so much energy explaining myself, you know, like a lot of doctors you still don't know the aren't up to play on CFS, and so they think it's just all in your head, and um, yeah, just explaining yourself to like friends and family and just people you see on the street, and you know, because they're like, what have you been up to? And yeah, and then they don't really understand, they're like, Oh, I'm always tired, ha ha ha, you know. I get it, we're all always tired regardless of you know, having CFS, but um, yeah, I just exert a lot of energy doing that, and I'm really trying to rein that in a lot more, and I mean it's in my whole life, really. It I I've always felt like I need to explain myself, like why did I make that decision to I don't know, like start seeing that person or um whatever, like any little thing in my life, like I even with people close to me, I don't know, I feel like this weird thing of explaining myself, and it's like we actually don't need to explain ourselves, we don't need to justify our reasons for doing things, you know, people don't need to know what we're up to all the time. Like, yeah, they may see one little snippet of you know what you were up to that day, but it doesn't mean that, you know, that whole whatever, whatever. It's just like fuck, who cares? Like, just worry about yourself, don't worry about what I'm up to, and me don't worry about explaining myself to everybody because no one really probably gives a fuck at the end of the day, they're all just too busy worrying about themselves. So, yes, more explaining myself, but um in saying that I've gotten onto a charity that supports people with um MECFS, and it's just been so nice not to have to explain myself because these people get it. Like the lady who started the charity had it, has had it for 29 years, she's bedridden. Thank I'm just so grateful that you know um I'm I do have uh more capacity than a lot of people do with this illness. Um and yeah, just being able to talk to her and she gets it, and then I'm you know, gonna be part of like the online support groups and things like that, and I hope to make it down to the North Shore to make do a one-on-one. But yeah, just being around people that get it, and I think that you know, a lot like when you do struggle with illness things or whatever, like maybe your like say for example ADHD, you know, like I'm sure like connect well I know for myself, like I I've not diagnosed ADHD, but I'm pretty sure that I'm on, you know, got some neurodivergency there. Um maybe something I'm gonna explore a bit closer, but I mean I just yeah, I'm I'm trying not to be like defined by labels, especially even with the CFS thing. But anyway, I I digress. Um I think it's about when you f getting these labels does give for you being able to connect, know that you kind of do have this thing, I suppose, and being able to connect with people that are experiencing similar challenges that you are with this thing, whatever that is in life, right? Like, you know, it's it's um it's um what's that 12 steps for um NA and AA and you know, really I think a lot of it of the healing is the sense of belonging, and so yeah, getting onto the CFSME group, you know, is quite healing in terms of a sense of belonging with other people that get it, like you don't have to explain it to them, and um and that draws on a deeper thing for me, really, that I've been going through probably the last couple of years or so, you know, is this growing desire for belonging in this new phase, in this new chapter, in this new version of yourself, you know. At school, you had hopefully, you know, some friend groups or some theatre or some sports or something, and hopefully most of us felt a sense of belonging there. Um, I, you know, I do know that's not always the case, but it could be online or whatever, like yeah, but I do hope for everyone that they kind of had that at some point of their lives. And then, you know, in your teenage years, you're well not teenage, then you're like late teenage 20s, you know, your friends are still having a good time, they all wanna, they don't have other commitments like mortgages and kids and stuff, so they all want to hang out, so you've got that sense of belonging still. Um, you know, unfortunately, I'm not a person that carried on sport through life, through adulthood, so I think people get a lot of sense of belonging there through sports, through rugby, through hockey, through whatever. Um, so then once for me, once you get to your late 20s, early 30s, everyone starts having kids to some degree, the belonging kind of drops off a bit because everyone doesn't have time, energy, resources, whatever, to catch up as much. And then if you don't, you know, get some belonging through hobbies or work or things like that, yeah, you lose it immensely, especially in the way that we live our lives, you know. Like I could not, I could go without seeing my neighbours for a couple of days sometimes. So, yeah, I mean, for me, I've got this growing desire of community and belonging and a village. Um, and you know, I'm also balancing this out with this, you know, loneliness of this period, which is like becoming a new version of yourself, and all those that community and that belonging and that village isn't fully there yet, even though I know that's what I'm trying to create in my life, and yeah, so that's going on for me. I wonder if it's going on for anyone else. Um, yeah, and for me, I am trying to think out of the box here, like unconventional, like maybe it's like co-living, you know, because I've also these last couple of months or years or so, or yeah, years to be honest, have shown me that like I need more support in my life, you know. Unfortunately, I don't have the energy at this moment in time um that I would like. Um, I'm also, you know, a solo parent 50% of the time. Um even 50% of the time is hard, like any kind of solo parenting is hard. Again, not gonna, you know, I'm very grateful for my situation. I know there's a lot of people that don't get any uh 100% solo parenting, and man, I feel for them. But especially when you're dealing with health challenges as well, you know, it's just a whole nother layer on top of it. And um, yeah, when you live by yourself and you know, you are you are responsible for everything that happens for yourself, like you're an adult, you know, looking after yourself in this world, and some days you're struggling a lot because of your health, and yeah, there's kind of no one to you know on the day-to-day on the reg pick up um help pick up the slack, you know. Um, so yeah, like just how can that best work for me? You know, I know the traditional model is you find a partner and you know, you live together and and I'm not saying that I don't want that because I you know I do want that too, but it's like I also know that I want more than that, like more more belonging in community, like I am open to co-living and yeah, so it's just figuring all that out and you know, and then in terms of uh there's been a lot going on in relationships, like just you know, when you've gotta honour your energy levels and um things like that, you know, it's like sh kinda sh sh seeing how everyone shifts and merges and responds to that, and um also, you know, now that I know this is where I'm at, this is what I need, you know, I'm gonna build my life and see who fits into that and who comes along with me. Um and yeah, I'm talking about from any type of relationship standpoint. I'm talking about like yeah, your platonic relationships, your intimate relationships. So yeah, there's it's an interesting time for all that. Um I do write about it, I've written about it a bit lately on my Substack if anyone wants to read a bit deeper into that. But um yeah, so just working on all the things, um but I guess one thing that really is coming up for me at the moment is um I I'm noticing that when I choose experiences, situations, relationships, you know, things like that that you know make me feel like joy and aliveness and and safety, then although it takes my energy, it also puts back in. So yeah, um on for a couple of months being like sick and kind of in the deep of the CFS relapse, I really didn't have and a couple of other things that were going on, but I really didn't have the capacity to chase too much aliveness to be honest, and that's kind of a bad cycle to be in, because then I feel like I'm kind of stagnating in the relapse, you know. I know that what I need is a bit of aliveness and joy, but I don't have the energy to do that, so yeah. I mean, it's also about looking at it, how can I get that in a different way than say, for example, for me, I really feel alive when I'm in the city, any kind of city to be honest. Um, I don't really want to live in one like full-time, but you know, I love being amongst it um here and there. Um, and I went down to I did have a kind of, yeah, I was like, right, I'm feeling all right-ish. I would like to use some of my energy for going to Auckland this week and celebrating with a friend his birthday and watching him DJ and yeah, just being amongst, you know. Um, and I kind of was feeling like if I don't, you know, start making some effort here and there, fuck I'm gonna uh end up with fucking no one in my life. I'm joking here, but you know, it's just sometimes your mind goes there, but um, yeah, it's that balance of like honouring where I'm at, but also, you know, maintaining friendships that are further away is more the the the issue or the challenge. Um, but anyway, so going to the city makes me feel alive, and you know, I came away from that night. I had a little date night for myself prior to the birthday party starting, officially starting. I um went into the cannabis museum, saw my friends there, and I went for a walk around the city on the pink bridge. I did half of it anyway, and then I took myself out for a little cheap and cheerful dinner, and it was just so lovely. And then I must admit, I did have to go back to the car and have a bit of a like, you know, sit, deep breath kind of meditation situation before heading into the next round. Um, but yeah, it was just a great night seeing my friend DJ, um, connecting with people from more so festival season as well, um, and just feeling alive and yeah, just part of the world. Um, and I went away just feeling so good. It gave me energy, although I was tired and you know, I did need to make space for recovering from that. But again, you know, just it's about being sensible, really, like and honouring where you're at whilst still doing the things that bring you aliveness and joy. Like, you know, I was home at I don't know, 10.30, you know, and so and I didn't drink as well. Look at me go. Not that I'm I think I've said this on here before, not that I'm anti, but I just don't need to add that layer of yeah, things to challenge to things. Um so yeah, just I am doing a little bit of a experiment with myself at the moment of m making sure that I do include more joy and aliveness in my day-to-day, because I think that is a very key part of healing with CFS. Um, when you're going, you know, through it, especially the like relapses or more challenging times with it, because yeah, I think it's it's just and anyone, I think we all need bloody more joy and aliveness in our life, right? We should be most of our life should be a lot aliveness and joyness, like really, and um, so yeah, keep you posted on that one. I was thinking I might share on my stories, like what my alive or joy moment for the day is. Um, and that also brings me to social club, which is something that I'm creating because it I genuinely want it in the world, and it brings me aliveness and joy, um, and you know. I'm also navigating that with this does take a lot of my energy and whilst I want it, and it yeah, it it's it is yeah, it's like there's also that uncomfortable reality of will this really does anyone else want this? Like I know there is a few people out there that are coming to it that do want it, but um, you know, it enough to be a sustainable really. Um I had Social Club on Friday night, and fuck, like it was just so good. Like Cullum and I were collaborating, you know, him starting off with the music and then us doing like a little bit each and then like a back-to-back, like that is what I live for right there. Like it was just bringing me so much joy, and like I just loved it. We were just like thriving off each other's energy, like yeah, it was just fucking cool, and I just love working with other people like that. Um yeah, so that fills my cup, but it does take a lot of energy. But I yeah, it's something that I genuinely want, and I just hope others want it too. There wasn't as many people there this time. Um, and I was even hoping for more people from the last time. You know, it was one of those nights it was rainy, there was other stuff on, and it's just hard to get people out of their house. I'd done a bit more marketing, so I was hoping, but yeah, I'm really trying to, you know, just focus on like well, A, it was just cool to see Callum and I work together so well musically, so I know that I can take a step back um and be able to host more people basically, and um yeah, but we've got to find the people, so come on, people just come hang out, like yeah, just come as you are, come in your bloody pajamas, come by yourself. Um like freed up for hosting, so no one will feel like I know what it's like when you're walking into a place and you're like fuck, like feeling like I don't know, just uncomfortable walking in there. So I really want to try break down that, you know, so people do feel like they can go somewhere on a Friday night, hang out, listen to some music, have a dance. Um, yes, there's the alcohol component that I'm thinking about. Like, do I want to bring that in like as a kind of offering as part of the experience? Like, not I don't want it to make it the whole thing, like, you know, um, that's why I kind of have been trying to keep away from like bars and things, but um, yeah, I don't know if that gets people in the door maybe to check it out and be like, hey, we don't take it and you know, take it or leave it on the alcohol next time. Anywho, it's um that's um you know something that I'm working through at the moment in terms of that. So yeah, I'm in this like weird middle ground, like this messy middle where like I know I can't go back to my old life and like all the shit that I used to do, like I mean, even I'm like health and safety work, like fuck, like no, like I mean a physically I couldn't work like that, like but also I don't want to, and that was probably also part of the problem, like just massive resistance at at the end there. That was probably making me sicker, but anyways, I can't go back, I don't want to go back to my I don't want to say my old life because it's it's my life, like it's nothing about old or new or whatever, like but I just know that I need to operate differently, and I'm just not sure 100% what this all looks like yet, but I've just gotta fucking do it, and so that's where I am. I'm just experimenting and fucking still figuring it out, and yeah. I mean, I guess this is come along on the fucking journey, really. That's what it is about. Fucking flipping the script and plot twists, really. Um hoping those will calm down a bit, because I yeah, I really don't have the energy for too many plot twists at the moment, but um, yeah, and I mean if you want to like one thing I do keep coming back to through all of this is my writing. Um when everything does feel messy, like it is how I kind of make sense of it, and it's where I can go deeper than I can sometimes on here, you know, just really bringing in all the layers, all the nuance, all the b like the grey and all that kind of stuff. So that's probably how these two things are gonna work together from here, like you know, the podcast is where I'll talk organically and perfectly, like just however it fucking comes out, um, whenever I feel like I have something to say or share or whatever, and then the writing is where I'll go underneath it, and yeah, it is more on a week-to-week update because I've got my kind of free stuff that I put out there and then my weekly paid subscriber thing, where a lot of it I do open up or am starting to open up a bit more of it, but um yeah, I mean just some of the stuff I just wanna keep under like paid because it's just very fucking vulnerable, you know. Um so yeah, just that's how I'm gonna roll. I'm just feeling all this shit out, but that's how I'm feeling right now. Um so yeah, if something I talk about here resonates with you, there often be something over on plot twists and flipping scripts. Um my sub stack, you can go on through um my with gem at with gem underscore um in my link in bio. Um yeah, so that's where I'm at, peeps. Hope life is treating you well. I look forward to coming on here, yeah, having conversations with people organically, coming on here organically. Um, and yeah, please do reach out if anything, you know, is coming up for you that you want to share, um, or anything, yeah, anything you'd like me to talk about, feel free. Peace out.