This is disabled girls who lift. We are reclaiming what's rightfully ours one podcast at a time. It's Mary Beth Chloe and Marcia bringing you the thoughts and unpopular topics to get you out of that able comfort zone. Welcome back to another episode of disabled girls Who live podcast. Of course, we thank you for your support here on the podcast, wherever you're listening, leaving your little reviews, giving us money on Patreon, sharing our post, all of that good stuff, we appreciate you. We have just me coming in today. This is Marcia. She on Seminole Tribe land in Florida. I am a black fem. I've got my champagne rose beats on today. My clear glasses, a bog shirt and I'm sitting in front of my painted wall. So I'm going to introduce our guest and then she will say hello. So we have Barani Walker today from Virginia on Paton land. I'm sorry. I didn't Google that. I hope I pronounced it at least close to correct.

All right. I did. My best. Brandy is a personal trainer and artist with narcolepsy. Last year. She opened a gym dedicated to defining the vision of strength health and wellness that considers all people. We're talking disabled people, queer people, anyone whose body doesn't conform to defined standards or expectations. The space is also home to a diverse group of independent personal trainers. And she also is working to open a small community and event space that provides a safe, vibrant space that benefits the R VA community. So lots of this is so awesome and we are so happy that brandy made time in her schedule to speak with us. Well, thank you so much for having me. Um This is really awesome. Yeah, it is awesome. Um So I actually haven't been on a the past couple of episodes, so it's now Mary Beth's turn to go through it. Um And my turn to be present, only one person can have a crisis at a time.

So, but you already understand what I mean by that, right? Like I don't have to explain that, you know exactly what I'm talking about because you have narcolepsy. But for people that just know narcolepsy from like that one movie where the girl tied her hair does not fall asleep on dates. Like, can you let us know what, what it's about? What movie is that though? Oh, I might be aging myself, but it's like an old movie. I'm also just really bad. I just like even the movies I've seen, I don't remember. It's bad. But yeah, narcolepsy. So definitely um a lot of misconceptions because of the way it's depicted in like Hollywood and movies and things. Um a lot of times it's depicted as someone who just like falls asleep randomly. Um But in reality, it's a lot more complex and less obvious than that. So the symptoms can vary a lot per person, but generally the the symptoms that kind of across the board people with narcolepsy experience, um the most significant being excessive daytime sleepiness, um regardless of like, you know, how much quality, like how much sleep person is getting and how they're taking care of their body is just like consistently um an issue.

And then additionally, there's other symptoms like cataplexy, which is um not all people narcolepsy have, but it's a condition that when um the person experiences like extreme or like more intense emotions, like excitement or fear. Um They, their body essentially tries to go into rem sleep, which paralyzes itself and it can be anything from like just like a minor little like knee, like um like knee buckle to a full on like body collapse kind of situation. That sounds scary as shit. Yes, I, I don't have that but, and like, it's something that could develop. So I'm really hoping it doesn't because it's definitely like scary because, you know, that's, that shit could happen when you're like dead lifting or something and that would be really bad. Um So, and then there's other symptoms too that deal with like the actual sleep. So like crazy, bizarre dreams, lucid dreaming and then also like um, ok, I can't say this word.

So you need to help me but sleep. I love, I can't see how paralyzed. Yes. Thank you. I can never say that word. And I'm always like uncomfortable when I have to because I'm like, ok, I need someone around me to help me say this. Um Yeah. So that's a common one where you, the body is still paralyzed from rem sleep, but the person wakes up and it's usually combined with like um negative hallucinations plus then like hallucinations, falling asleep and waking up and um kind of different things. So like narcolepsy has a lot more going on than the tiredness. But um actually, and, and then for some people, they do fall asleep, but for a lot of people rather, there's like this intense like exhaustion and desire to go to sleep, but they might go against their will. So that's a lot of information. So how could somebody figure out that maybe I have narcolepsy versus let's say, you know, pots or just dis autonomy in, in general or just the fact that autoimmune diseases come with fatigue? Yeah. And so that's one of the challenges and so this is still considered a rare disease and it's pretty frequently misdiagnosed or missed for years.

So I think like, don't quote me on this, but I believe the average for um like um 10 years before being diagnosed is like, maybe seven or more than that. It's still, it's like a ridiculous number. And part of it is because the symptoms mirror those of other illnesses. Um, but a big thing is, is, uh, if there's more than simply the, like, daytime sleepiness or like, um, daytime fatigue. So, like if there's the hallucinations or other symptoms, that's an indicator. But also if the person, um, you know, has already gone through testing and found out that, um, you know, they don't have maybe the other diagnosis. Yes. So then a sleep study is a good idea because even if it's not narcolepsy could be another sleep disorder. And so when you get that done, you do the overnight sleep test and then you do a sleep late latency test, which is the next day and it's 55 or so different naps.

Um, and they're looking to see you fall asleep within a certain average. And if your brain goes into rem sleep within um, those 15 minutes of the nap, because technically, your brain should not go into rem sleep until like 90 minutes, the sleeping. So that's the whole thing with narcolepsy is, is great. Like you skip some support. Yes, you skip, you jump around, you spend too much time in rem sleep. So that's also why during the day, the sleepiness sometimes can be the body trying to force itself into like rem sleep. Basically, the brain can't regulate your sleep cycles correctly. Um, and so they can test that. So they like to see like, I think it's like within seven minutes you fall asleep. So, like my average, I fell asleep within two minutes for all my naps as an average. Um and then three out of five of them, I went into rem sleep. So they look at like the majority. If you do that, then you're diagnosed with narcolepsy. Wow. But that's pretty much the only, uh, defining factor is that sleep study.

It's not like some of these autoimmune conditions, you know, where it's like, oh, it's just this blood work like you got it or you probably don't. Yeah, like the whole process, it's a whole process. It's not a great experience. At least mine wasn't. Um, it sounds long. It sounds sterile. It sounds scary. It sounds probably expensive. All the things. It doesn't sound like a good vibe. And even after that too, like the process of, of working with doctors and trying to, um, manage and, like, figure out how to go through life. Now with this diagnosis has sucked. Like doctors, the doctors, my experiences with them have not been great. I haven't really felt like a person around them in many ways and there's just a lot of also like barriers because of the medications are often regulated. So, in order to get my medicine, I have to go to the doctor every three months and it's like, not a cheap visit for 15 minutes for them to be like, are you?

You good. And I'm like, yep. And then they prescribe a medicine. So it's just some shit. It's some really, they make it the people that need the most access, they make it as convoluted as possible. Oh, you need this here. 10 steps. Like why? And then, like, you already know I have this illness that like, isn't great for driving and like going places all the time yet. You're forcing me to come here. We couldn't do like a zoom call or something. The math, the math is the math on that one. This is not adding up. Were you recently diagnosed or is this like an adulthood thing? Well, it is kind of like more recent. So I guess in June it'll be two years. Oh, that is recent. Yes. Um So I'm still figuring out you're just learning how to take steps. Yes. It's just a baby. I was gonna say I'm just getting to the point now where I'm like, ok, it's starting to piece things together that work and don't be legit.

Like you're a toddler, like you just started walking without falling, like you're barely too. Um, do you look back on things in your childhood? You know, like, oh shit. That tracks now. Well, the interesting thing about narcolepsy is it's something that can develop later in life. It's not in here. It doesn't have to be like, so, I don't know, I had a life before narcolepsy. So also some of the frustrations I can remember what it was like to not feel this way. And so it's sometimes really frustrating because I have limitations. I didn't before. Um, so I'd say like, for me, it started developing in college because that's when I started being like, something is off. Like, I'm like a weird level of tired. Like this is strange and it just kind of continued to worsen and I had to, like, talk to doctors and of course they weren't sending me in the right direction. So, no, they don't believe us. Yeah. But yeah, I could relate very much to that because my issue is not necessarily even figure it out totally. But anyways, it's not necessarily, I didn't have these problems, you know, six years ago.

So there was a, before times, you know, like, I think about the days that I used to do powerlifting training, like four fucking days a week, two hours long and now I'm just like, oh, if I do it once, right for me, like, I completely feel you. Like, that's something I've struggled a lot with this process is how it's changed my ability to, like, move my body. Like I just can't do what I could do before the symptoms, like, fully came on. Like, if I do that my next day is, like, completely exhausted. Big fact, big fact. And I have to, like, explain to people, like, No, no, I promise. Like I am actually intelligent. I'm just tired right now like there's also the mental capacity shift that is hard to navigate the brain fog. That's a big part of it. Two like uh yeah, I I felt like I was just like wandering through a swamp like up to my neck before my diagnosis. Like it felt like I was constantly swimming and like trapped between this weird in between of awakeness and sleep.

So yeah, so yeah, not a vibe not recommended. I don't recommend it. I don't think anybody should be going there. Um So it's interesting because we are in uh the similar vibe as chronically ill people that run their own businesses because that sounds like how could you be able to do that? And why would you choose to do that? That that's something probably people are gonna think uh because I am insane as part of it. But uh yeah, it's one of those things where again, like some of this process started before things like fully hit me, you know, but then also actually it's really importance that allows me to set my own schedule so I can manage my symptoms. Whereas like I literally couldn't have like a normal job where I go and I'm there for like 78 hours. I had to do things in little pieces.

So I I need just three hours to wake up in the morning. You want me to be where when? Nah. Yeah. So, like, there's definitely challenges, like, with running a business, but there's also like the things that really benefit, you know, us who can't have just like a traditional work life. Um, and I think in a lot of ways in my particular field, it makes me a better trainer and better able to work with people with variety of like, health issues and their own chronic illnesses because like, I like firsthand get it like there's some days that just you can't, you know. Right. Right. So how do you navigate because you don't just, you didn't just open the gym, you train people also in the gym. Yes. So then how do you navigate showing up for people when you're like bare minimum, low battery? Yeah, they'll definitely so much of being able to do the things is making sure I'm managing myself well. So like sleep schedules gotta be consistent food.

Like if I'm not eating enough regularly, like I die um again, like being thoughtful about my schedule and then sometimes just being like, I'm sorry, I'm not doing ok today. I need to reschedule, you know. Um So there is that flexibility of like I am working directly with them so I can reschedule and cancel if I need to. And sometimes that happens where I'm like, I'm literally like falling asleep right now in this session. I need to like stop after this one. Um So that happens and like I think a lot of this last couple of years has been learning, like, what I can do and can't do in terms of, like, how I set up my schedule. Um, right. Like, the time of day that works or, like, the length of time. Yeah, for sure. I had to change my morning sessions because at one point I was, like, doing like, 8 30 I was like, that's too early for me. Every or not either. I was doing eight A MS and while that doesn't sound amazing that early to some people waking up at like seven was way too early and I was miserable those days and like simply making a few changes like that made a big difference.

Yeah, that's disgusting to me. No, I know I cannot, it's hard because normal people work hours that they can't train when I want to train, you know. So there is kind of a struggle with that. So Right. That makes sense. Um I, I can very much relate to that because running my business has its stresses and thankfully I have someone to help me with like admin big brain time stuff, but at least when I have a day where like shit hits the fan. Like I will literally just text people like I'm gonna have to cancel today and nobody's gonna be like, oh my God, why? Oh my God. But my kid needs therapy. I might, they're just gonna be like All right. Cool. And then if they're not that kind of person, it's my business. I'm gonna be like, yeah, we, we're not a good fit. Like, you know, so being able to have that freedom does make a difference. Um, working in a conventional setting.

It's like for the most part, whoever shows up, you have to serve them whenever the person that employs you tells you. Right. Like, it's very tough to find accommodating employment. So it's not like disabled people don't want to work and like, we love being home all day. Wow. Like, totally or just like even like, maybe the way people would treat you in that work setting because you have different needs, like, especially like when having like illnesses like mine and what it sounds like you're struggling with everyone kind of gets a sense of being tired but like this is like a different experience than that. It's and that's like the hard thing that people understand. So um there's like that additional frustration of people trying to tell you like, what you need to do to make it better and you're like, you don't get it though, you're young but you're young, you look fine. Have you tried going vegan? Maybe you should just cut out dairy like I promise you if it was just fucking milk, like I would have solved that a long time ago.

Thank you know, I wish. Yeah. Yeah. Yeah, that gets very annoying. Um So in terms of your diagnosis, you're a toddler, in terms of your business. It's also new, right? So you're growing both of what were you doing before? Well, I guess there's several things going on there. Well, so my first, my business first started personal training independently and I was still in school because I, I just started personal training when I was in school. I went to BC U for a sculpture and I was like, not into, you know, working for like a corporate like kind of company with it. It was very clear to me like how they were um just like taking advantage of the clients and then also just like underpaying the trainers who, you know, were really valuable. And so then right before the pandemic hit, I decided I was like, you know what, I'm just gonna try being independent, which I'm glad I did because I would have lost my job anyways.

Um And so then I was like training outside, my car became like this little mobile like gym equipment space and I was meeting people at the parks and creating relationships that way and then started like training um paying to train other other spaces. So then I ended up in a space that like, I despised because it was just like masculine, like gross vibes like shredded, dread bros, I was just miserable. And like, also all this was going on during the process of getting my diagnosis, I was like, miserable because that wasn't resolved. I was exhausted and, like, just feeling really unhappy. And then I was like, man, it'd be really cool if there was like a gym that was like this and these ideas. And I have these clients that are like organizers and just people with a lot of great resources and like, you know, you could do that. And I'm like, no, I couldn't do that. And they're like, you could and they got me like, in contact with some other people who had similar values and ideas.

And because of that, like those people already had some equipment and things. So they brought to the table resources that made it a viable option. So then I found the space and we created this gym. So um it is like specifically more for like personal trainers who are independent. So it's an affordable place for them to run their businesses. So they have their autonomy. So like I'm not anybody's boss. Um But then I also make sure they're trainers who like fit our value system. So they're like anybody. Yeah, like inclusive well informed, like body positive and just like um queer friendly humans. So that happens, that's been happening. I trained still and then um just opened another space well, because I can't calm down um as a generalized anxiety. Is it? Well? Ok. Well, we're not gonna talk about that. It sounds like a trauma response. I need to talk to but I'm not that kind of therapist.

So we're not talking about it, same space or something or is it like something that's up? My, it's the same landlord. I'm renting a second building, but it's literally so close to the other building and it was like a great opportunity because my landlord is like super sweet and lovely, which is like hard to find. Um So this is like a really good opportunity. And since having the space or the original Space Body Arc Open, we've had a lot of interest in people using it for events and other things that don't necessarily um you know, function well in like a gym settings around all the time. Yeah, exactly. And I was like, there's a need for space for people to be able to hold like social related kind of events. So the opportunity kind of like popped up and then um we just had our opening party over the weekend. So now it's like this event, community space. Yes. Um And already like scheduling some really exciting events um for like next weekend there's gonna be a um a uh drag workshop and drag show for the bipap community and working with several other people to schedule some more things like um So, yeah, so that's happening.

That's pretty cool. So these things are like totally um solo business endeavors or like you have a partner or somebody that you could work with or like solo, they're solo um, I have like people in my life who lend a hand and help where they can. Um, I have someone who's gonna come on with the second space a little bit more so, but ultimately, like, the business stuff is like full on me crushing me at times, you know. So, yeah. Hm. Hm. Interesting. And take notes for, take notes for your next therapy session. It's not me. It's, it's actually, it's actually really, it's, it's good. It's like the way I approached this was in a way that, like, I knew I could do it for myself and like the, the gym space, it basically runs itself like that takes minimal time for me. And this other space for me is really a huge art project. So it's kind of like an installation piece where the community gets to interact with the space and, and so much of it was like a physical thing.

And so, like, I do a lot of like building and things with tools so like, I didn't need to outsource and do things for that. Yeah. So just in case anyone's like, not clear, I was fucking with her. That was a joke. But um it, it sounds like it's a great way for you to put what your passions are in real life, but in, in, on your own terms, right? Because you have the gym thing, which was supposed to be what sounds like your side hustle. Yeah. Well, uh Yeah, I think so. I've been kind of figuring out like, what's the things that make it easier to wake up in the morning? And even though the stuff is like, uh exhausting in its own ways, like, it gives me a sense of energy in life that like, really helps me manage my narcolepsy. Um And that's something I'm kind of figuring out still. Uh And even though like, yeah, it's challenging, it just like it ultimately makes me happy. So, you know, it's something you look forward to.

It's not just like, well, fuck, here comes another day of sludge. I gotta drag myself to through Yeah. Yeah. It's a rough feeling. Um But how do you manage doing all of that like business back in and then you're seeing people so you cancel people when you don't have the energy. Um But what about your business stuff? Like what if you can't do? I don't know your taxes on time because you're fucking Yeah, I mean, it's all like time management and I manage my time knowing my illness and like I mentioned casually, the anxiety like, honestly, I think my anxiety combined with the narcolepsy allows me to function even though it like sucks for me, but um is gonna turn into one of those. This is my superpower things. It's like a power that harms me but also allows me to function in some ways. But yeah, um I mean, it's not easy but I think. Well, the beauty too about my training is I'm able to, I only, you know, I only train maybe like 24 hours or so a week.

So that's what gives me time to do other things. And since I can do it around my own schedule, like, that's the key thing if I have to do something when I'm having like a narcolepsy episode, um, when I'm feeling like, completely exhausted, that's not realistic and doable. Um But luckily, these are all things that like have some level of flexibility, you know. So if it's something that has a deadline, I try to generally get it done as early as I can so that I don't have to run into like the fear of not having the energy later. So like when there is energy one day, like if I can do it, I try to do it, you know. Yeah, everything is kind of fluid just constantly shifting. Yeah. Yeah. So that's definitely like key in how and make it happen. Um Yeah, that makes sense. And also just ask me for help when I can. And like, fortunately I've like built a really good community here and um they really help support me as well as friends and my partner.

Sometimes I'm literally like laying in bed, like I can't get up and my partner like brings me caffeine and like picks me out of bed in the mornings. And so, like, I think having that support is very, very important too. Oh, yeah, that's just definitely life changing, I'm sure. Um, so the partner, your partner lives with you and kind of helps you like day to day and then you have people that support your businesses. So, like, you're just surrounded by community in all aspects. Definitely. Well, I just, like, fell into, yeah, a job where I get to meet a lot of different people that have different resources and knowledge and, and they just like, help so much sometimes. So I just learned to kind of vocalize like questions and things and sometimes people were like, I know somebody who does that, that can do that. And I'm like, oh OK. Yeah, but that's not always easy to do even just like recognizing like, well, shit, I should ask for help. Like that's like a yeah, whole ego thing right there because then you're like, well, if I can't be self sufficient, then what does that mean about me?

You know, like, relax. I, I definitely struggle with that with like the, the physical building like stuff like, no, I can do it. It's like a challenge. I'm like, I can do it but like, but also like, I don't have to do this and make myself miserable. So like you can, but should you, do you have to is the difference? Yeah. Um OK. So I forgot to mention earlier that we do take a small break, which is literally just not talking for five seconds so we could do that now, before we shift topics. That sounds good to me. All right, we're back. So we're talking about the gym, managing business, asking for help, ask for fucking help somebody write that down on a sticky note if you need it because I know I, I needed that in the beginning. Um, but I would like to hear more about your managing your time, not necessarily managing your time, um managing your actual movement, practice for yourself, like fitness and whatever you're doing.

Yeah, that's been, um, that's definitely not fully resolved. I mean, I don't know if it ever truly is, but that's been kind of a difficult thing since like the full onset of my symptoms. Um, before that I was like very much lifting a lot, like working out like six times a week out of just like pleasure of that. Um What's your go to now? I'm just like, well, now it's extremely fluid. So one back in, I've had to learn that one. Like during those times, I wasn't nearly as active as I am with my job. So now, you know, like, you know, training several hours every day and moving dynamically throughout that and I realized like, I, I had to take that into account too. Um So in general, like for my energy, I just can't do as many intentional or intensive workouts while still training at the capacity that I am but also I find my body just like struggles to recover from workouts so much more.

And that's largely because sleep is huge when it comes to recover. Oh Yeah, my sleep is just like forever fucked and there's no way to fix it. So um so now like most recently when I, I basically had like a month and a half to get this last, this new space, like ready for the opening date. So, pretty much then I like, didn't worry about working out because I knew between my sessions and, and moving and, and working on stuff in the space, my body was getting movement that it needed and it was more important that I had the energy to be able to do these things. And I just like, started realizing like, I have to sacrifice working out in that in that way because it literally can destroy me. Like I worked out yesterday and today I've been so freaking exhausted and like uncomfortable. So, yeah, it's kind of a very fluid place. If I have the time and energy for it, then I'd say like I try to get in those intentional workouts a lot of times now actually sometimes like with clients in ways that's more um like enjoyable too of like spending time with someone.

Um But also more so like functional movements, less lifting. I've had a step back from I, I was, yeah, like I can't dead lift and squat in the ways that I still kind of bench. But those just, like, can destroy me for several days after. No, I relate to that. I haven't dead lifted, like, since 2021 maybe there's no second squat bench and dead lift in the same week. Yeah, it was so frustrating. So I was like, it wasn't that long ago that I was doing insane shit. And, like, I was like, doing Bulgarian split squats with like a £25 dumb down. Now I'm like, I just like show a single one of those and I'm like, OK, I'm done, I'm done. I'm done. Yeah. It's a wild concept. Yeah. Shit. Shit changes. And life comes at you fast like whoa, slow down. Yeah, I don't think I done lifted for real since like 2021 and then when shit really hits the fan, the squad has to go to Yeah, the was just fucking fatigued out like afterwards.

Oh definitely. Or it's not even afterwards. It's like there I cannot scrounge anything and there's nothing left in me to scrape together with that weight on my back. I feel you. Yeah, I feel you. So there's also that um so it, it kind of sucks because barbell sports um also like strong man like that was like, I enjoyed it. Like that shit's fun. Like I loved getting in there like Yoke was my favorite. Like I used to do like 500 plus. Yoke walks like that shit's like, wow, this is a blast. But now I'm just like, oh, yeah, honey, I don't know if we could do that anymore. Yeah, I completely understand. I'm, like, living vicariously through my clients. So I'm like, yeah, you live that heavy thing. And I'm like, who cheering from the sidelines, like, at least getting that kind of, um, secondhand enjoyment out of it. But, yeah, it just, it's not the same and that's been a hard thing to process as well. It's a, a lot of grief, a lot of grief for sure.

I've switched to, to learning Olympic lifting because at least you keep it lighter and have different kinds of progress. But yeah, it's still not the same. I still might watch somebody doing some stone lifts and be like, oh, man, um, the other thing that changed for me, uh, I don't know, does environment play a role for me for you? Because the other thing that changed for me is like, I can't stand being out in the sun anymore. Well, I think, hm, less of that for me since, like, I now have this space that I've gotten to, like, you know, curate and design and feel like, truly comfortable and safe in. Um, it's really just more like, I don't know, I just, like, don't get lost in it in the way that, like, I once did at least like those styles uplifting. Um, no, it's not the same. Yeah. So that there's definitely a lot of grief just knowing, like, well, I used to be able to do a whole competition outside and now I'm like, I go grocery shopping and I'm like, yeah. Yeah, I need to lay down. Yeah. So it's so do.

Oh, yeah. I like how the hell was I, a full time art student with a job and doing all the stuff that I was doing? Like, I generally have no idea how I was doing all that now. And I'm like, oh my God, I mean, I wasn't doing great towards the end because things are starting to happen to my body, but we were just pushing it anyway. Yeah, as we all do. And I was like, oh, it's just because I'm in college and I'm tired, I'm just tired. It's just this deadline I have. But, um, the lies we tell her. So when we're in denial, I feel like I've been focusing more on, like, movement that just, like, gives me joy. So I, like, been playing around with like, Ariel, um, Lera hoop and stuff because it's just like, yeah, those are fun stuff that doesn't feel like a workout right now. Feels the most, like, um, positive for me sometimes also because I work in it. So, you know, like every day it just like I've been doing a while so it gets tiring, you know, like doing the same kind of motions.

Right. Yeah, I think there's also a mental thing to um it's not just managing your energy, it's not just energy con con conservation, it's not just fatigue physically, but I think we really downplayed the mental aspect of it as well. Um Like we think it's just like, oh I have the energy I should be fine but like mentally that shit could be tiring. Like, you know, let's say you spent three hours fucking loading plates and unloading plates, like mentally you just might be like, I can't fucking touch a plate today. Like I'm done with that, you know. Oh yeah, the social aspect of it too. Yeah, because like, I'm ultimately an introverted person. So training for me, it, there's the physical element, it's exhausting. Yeah, I have to be turned on. I have to like, I have to be aware and like there the whole time and, you know, when you have brain fog, it's really hard to do that. So then you're working twice as hard, twice as hard. It's the introvert like, oh, I have to, you know, be people facing and then also I have to fake being well.

Yeah, exactly. And sometimes like, I had some sessions this morning and it was like that where as soon as the sessions were over, I just like passed out because I, I like, it was like, I was fighting through the remaining little bits, like, because of all that struggle physically, uh emotionally, everything. It's tough. It's definitely tough. Yeah. The mental like, so sometimes I might have the energy to do some barbell lift or whatever. But like, mentally, I'm like, if I have to fucking pick up a bar and adjust a rack, I can't do it. Like, totally like that just could be the barrier. I gotta put on a sh I gotta change my shirt so I put on a bra. Nope, that happens even sounds with training for me and like I originally wanted to do like this maybe like have the client do this lift or something. But like, I do not feel like setting that up right now. Like I do not want to set up a bar bell and plates because it ends up mostly being me like racking, you know, putting the weights on and everything.

It's like, fuck, I'm like, OK or do something else that works the same muscles because I can't today. Yeah. Yeah. No, that's a more even in the moment of training for you definitely of work wise for me. So I'm a physical therapist. I don't know if I actually said that out loud, but I used to work with adults and I realized that I can't do that because I liked working with adults which required like you said being on and faking being well, that was too much. But then I also liked working with like neurological folks and that is hefty like spinal cord injury like wheelchair users. And you're like, you know, hoisting them up, standing them up and, like, working with them to do, like, gravity defying shit. And, like, I, I had to come to terms. I'm like, this is actually not safe. Like I'm struggling here. I could hurt somebody and hurt myself. That, that was hard. Yeah. No, it's, it's frustrating because you want to do it but you're fighting with your body. Yeah. So, in person now I just work with kids. Kids are the best.

You don't have to fake shit. Just show up. Like if I don't want to talk that day, they don't give a fuck. They're talking for me like they're not just like, oh what's going on today? Are you mad at me? Like, yeah, they're just like today I drew a cloud and the cloud had purple swirls and I'm just like cool kid. Keep going. There you go. Yeah. Yeah, that's great. Yeah, luckily my sessions are pretty casual so a lot of them are like become friends and things so I can be like, hey, I'm not doing great today so I'm not gonna be like very excitable and they're like cool. We get it. So like usually I can be pretty clear and upfront with clients. But um yeah, I still feel that guilt of like I need to, I need to be this certain person right now, you know. Yeah, I mean that's like the hard wired and you're trying to work to reprogram that. So I mean, it's great once you're in the environment that you have the space to look at it and be like, all right, let me look at these things that are like holding me back and work on it but like you, you still got it, work on it.

Yeah, it's not easy. That part is some shit. Um What was I gonna ask you now? I just lost it. OK. So you went to school for sculpture. Now we have a gym, we train people and now we have a community space. Are there sculptures there? What are you sculptor? Touring the verb? Well, uh it's a pretty broad thing. A lot of it came to play with like I built like a stage and, and um I sewed all these like iridescent covers for these like booth seats that I acquired through like an auction and I added like bottoms to those and wheels. So it's a lot of just like random things, figuring out how to like put them together or like make something. Um I, lately I've been into doing like neon lights with fur. So I do like these fur wall pieces where it's almost like like um climbing across the wall and then like a neon light integrated in it.

So I did. Thank you. Yeah. Um I did that with a big neon moon and then integrated um fiber optic lights throughout the fur. So they twinkle like stars. So there's like 430 of those. Um So in the new space, it's definitely a lot of me just being like, having ideas and then you're like, yes, put it in here because why not? So like, um it's, it's like this play zone for me where like making these visual things that then like other people get to enjoy too. Um And then also, like, the sculptural elements came into like the other space, like I've mounted and like put things on the wall and built stuff like pretty much by myself, like, I'll get like hands to help. But like, I do pretty much all of the like labor and things um around the spaces. So in a way, like the sculpture uh degree was like extremely practical because it like, taught me how to do like things like you saws and drills and how to we and like things that like having that knowledge, like an artsy handyman.

Yeah. And then I have this little thing that says handy man and I'm like, that's me. So I just kind of like um because of that, then it makes it more doable for these things because I don't need to pay someone to make this thing or like, you know, um paint the floors or build the stage. And so that makes like on a very small budget, these things more doable too. Yeah, more doable. And it's also the factor of things that bring you joy, like waking up and being like, I made this space I'm sure is like, yeah, and then, well, when I can get in that, like, flow state comes to the art, it's one of the few times where like, sometimes I can lose track of like my symptoms. So like when I come out of the flow state, it like hits me like a train. But like, it's one of the few times I feel like I can, like, kind of leave reality for a little bit and just like, you know, really, like, be there in person without the rest of it. Yeah, the rest of it. Exactly.

Yeah. No, I understand that. That makes sense to me. That's um all very interesting. So you said in the environment doesn't make a huge deal to you? Did you always live in the area you live in? Like, could you go somewhere that's super hot or super snowing or? Oh, gotcha. When you asked earlier, I thought you meant like the workout environment. Oh, like the vibes. Yeah, like the vibe. I mean, I mean, nature, my bad. Um It really can depend definitely like hot days, real sleepy days, that kind of thing. Um I think actually sometimes like, well, I lived so I'm in Virginia and I grew up in North Carolina so it's not that super different. Like, um weather wise, it's not muggier in the north. It was like a little bit warmer where I was. But otherwise they're pretty, equally humid. It just definitely is like, it, it's like four hours from here where I live. So it's not like a huge distance. Um, so like some, I, the biggest thing that affects me is actually like weather change, not so much, like, just like the environment.

I like, notice strongly a big change in my energy levels when like shitty, like icky weather is coming on. So, like the last few days I have just been, like, struggling because it's been rainy and just like, um, cloudy, a random, like, drop in temperature and then it just totally shifts that kind of thing. Yeah. Like any time when, like, that shift or it's, like, prolonged for several days, like, I can feel that, um, really impact me and especially, like, like here lately the weather's been really weird. Like, we had, like, a day last month that was in the eighties, which is really weird in February, in Virginia. Um, and then, versus this week we've had days that are in the thirties and like, so it's like, that's been really weird for my body. Um, but in terms of like, environments, I don't know, I mean, if I was exposed to, like, something I'm not used to, like, I haven't experienced dry heat so, like, maybe something like that would be a strange experience.

But, um, I wouldn't say, like, more than just, like, sleepiness with, like, heat, you know? Hm. That's interesting. So, the fact that it could, um, bother you and whatever. Like, what do they consider narcolepsy? Do they just call it a sleeping disorder or did they call it, you know, like, what do they call it so well. So they've learned some things, um, they're now kind of classifying it, classifying it as an autoimmune disease because what they think is happening is that the body is destroying, um, these important, like chemicals in your brain that help to regulate your sleep cycle. That makes sense. So there is one way they can, like, you don't want to do this because it's really painful. But you can get like your spinal fluid tapped and, oh, that not great. Yeah, I agree. They can, they can, um, like check the levels for that, which isn't always, you can still have narcolepsy, um, and have normal levels of, it's called like hypocretin, I think.

Right. Um Really, but primarily they think, um, it's tied to that. Um And so it's like autoimmune potentially. The problem is like, they're not entirely sure like how it's developed. There's evidence of it being genetic, but there's also evidence of it being related to like traumatic head wounds and then even like the swine flu as well. So it's possible, like maybe as a kid, like I got a strain of swine flu that then like activated something that developed in my daughter, but they're so behind on autoimmune conditions in general. Um, because it mostly affects people with uteruses and like, you know, who gives a shit. But, um, like, that's pretty much what can happen. So when people say things like anyone could be disabled at any time, I think a lot of people just picture, oh, car accident oh falls. Right. But it's like no dude, like, if you have something in your genetics that's like ready to blow and you have a pregnancy or you have COVID really bad or swine flu or whatever like that, that could do it totally.

I still can't figure out like what turned it on for me. Like nothing really happened to me. Well, and some things that may not be a trigger like narcolepsy, it's common for it to kind of develop in like mid teens to like your thirties in that time frame. Um And it could just like develop one day and not have a trigger necessarily. Um But the problem is, it's just like too misunderstood right now or not misunderstood, but it's not well understood. Yeah, it's under, under research. Yeah, it's like there's no cure and there's not really a great way of managing it. So right now, basically they give you like stimulants of different forms to try to manage it. Um And as someone with anxiety that has been a nightmare doesn't go well together. Um Yeah. Well, and then also there's like, not a lot of studies actually about like some of the things that I have issues with. So, like, I've been trying to look into, like, more information around, like, how it affects fitness recovery and just like, muscle discomfort and things because I find sometimes, like, my muscles are just hurting and I haven't even, like, done anything and, like, um, and I've tried to research it and there just isn't really studies around that and, and, um, and of course, like other circumstances that haven't been looked into.

So it's like there's other factors that I might have going on. I don't even like, know about. Um Yeah, so hopefully though there they're getting some um I think there's like a grant or something, a big grant recently for research into narcolepsy um to help get better like treatments just because like right now, like even the medicines I have are help very minimally, right? But it's not fixing the problem, which is the sleep, which is like the main thing, right? It's like it's just helping you survive the day but your sleep is so fucked. Yeah. Ok. And there's nothing I can help. Yeah, I mean, there's nothing really, I mean, there's things I can do to make it not as bad. So like, again, like consistent, like a sleep schedule going to sleep at the same time waking at the same time, like, you know, like just, you know, not drinking before bad things like that, like can still make a big difference. But um otherwise it's like my sleep's gonna be fucked anyway.

So like um yeah, one thing too, like, I don't understand is the correlation between it and food because I have a really big issue where if I'm not frequently eating, I like have like a drop in blood sugar or something where I'm just like, I can't move. I'm like so exhausted and I've had like, things checked and everything. I'm not anemic or anything. Your labs are normal. Everything's fine. Good news, but there's no research around that they like in other cases um for some people, food makes them sleep or makes them um sleepy. Whereas for me it like, I'm like, oh, I actually need to eat now, I feel better. Um So there's stuff to them like, I don't even know, like, what does this mean? Is this narcolepsy? Is this just me? Like, yeah, and I'm sure that doesn't even help you figure that part out. That part is probably confusing. Yeah. Oh And literally, I've been in the doctor's office and watch him like Google something in front of me and he pulled up like a website.

I'm like, I literally have read that website like, yeah, and then you're gonna charge like $200 for this visit. Yeah, like makes me so angry. Is there um What do they call them? Center of Excellence? Like is there like a place that's like hard core we know about narcolepsy in the US. I don't know about in the us, maybe there are like sleep centers but like uh like, I have to go to a sleep specialist for this, but it's still just like, not at least the no one that I am working with seems to be specialized in narcolepsy. Um I would assume there's probably different places in the country at this point. Um Since there is like more, there's like a, I follow a few different like accounts on Instagram that are from like um narcolepsy awareness and things. So I know that there's been a big effort to bring about the awareness of it. So I would assume there's gotta be at least like one.

I hope. Yeah, I hope so. I mean, well, like all of the disorders that I may or may not have, like, I know that they have like U M has a sarcoidosis center like it like, and then you would figure that basically, like if you go there, they all know about your condition. But maybe hopefully, but I've never been somebody that's like traveled for that kind of shit or like, I know like John Hopkins has like a Shogren center like, and you like, go there and you're supposed to spend like a day and see like five people, but I've never actually talked to someone that's done that kind of shit. I like, I really wonder if it makes a difference. Yeah, I mean, I don't know, like, if it was like, when I was getting diagnosed and everything that would have been great because also, like, they don't, there's like, so much of the emotional, like, component that you need support with that. Like, they don't have systems in place for you in that way. Like, um, yeah, you're in the, like, the, of the level of, like, you're at the mercy of the level of ableism that that person has unpacked or just left untouched.

Yeah. Yeah. I've actually changed doctors too because my first one was just the worst. It felt like I like talking to a wall. Like when I first tried the first medicine he gave me, I was like, I am dying like this is making my anxiety go through the roof. Like I'm having panic attacks like I'd rather be tired than this. And he was just like, that's weird. And I was like, ok, I'm sorry, but you can help me or not. Why is it like, upsetting my stomach? I feel like I need a shit like so much like it was like disrupting everything and he was like, hm, I don't know, maybe you should try um chia seeds and I was like, ok, like, thanks. Yeah. Oh yeah. I, I feel like there's so much bullshit with the way that medication is prescribed and that also definitely causes me to change doctors a lot because like if you don't even understand the side effects of the medication you're giving like, what the fuck are you doing? Right. What do you, that should be, it's like bare minimum doctoring.

Right. Or not taking serious, like, my complaints of, like, the way it's making me feel, you know, just, just because it's not a common side effect doesn't mean it's not a valid experience that I'm having, you know, um, as like, who knows, who would the sample of people that you used for, you know, that testing? Yeah, they're usually not people like us. Um And that's kind of my problem with getting diagnosed right now is a lot of these autoimmune conditions have um criteria that are based on like post menopausal, like already fucking wrecked to the point of can't moved people. Like, how are you comparing that to a 30 something that's still up and about? But like things aren't right, you know, like, yeah, the same thing and oh my birds just arrived apparently. Hello bird? Like, do you want to see her this Lolly? She just pulled up. It kind of goes where she wants sometimes she's just dancing for you. Oh oh, so she's just free like she doesn't. So when I'm home I try to keep her out.

She's a little, she just took a bath. So um yeah, she's my little nap buddy. Her favorite thing to say right now is, are you sleepy? Oh my gosh. And I'm like, yeah, it's always sleepy. Oh, I love that. Oh man, that's lovely. Um So we're coming up on like about an hour. Is there anything that we didn't talk about that? You were like, I gotta get this off my chest. Do we miss anything? Um, I don't think we missed anything. But if you wanna say, like, if something feels off, you know, like you're valid and sometimes it shouldn't be our job, but sometimes doing a little research might lead you down a path that like, the doctorates aren't helping me with because it was Reddit that helped me get my diagnosis because no doctor sent me to a sleep study. I scheduled it myself after researching. So, yeah, I guess just like, I want to validate how people are feeling.

Definitely. And they'll put you down and be like, oh, did you google that? But motherfucker, are you using the same search engine as me? What you mean? I googled it just like you did the Yeah. Um, and yeah, we shouldn't have to do it, but we are doing it. I mean, we're the experts of our bodies and honestly, for so many disabled people, we are like a little case study or research, whatever, like of our actual condition, like near expert level, it shouldn't work. But, yeah, exactly. But I think I'm really glad at least now we have like these online communities where we can share that experience. Like that's been really nice to be like, go on there and see other people having like, shared experiences. So like, that's where I've like asked some questions for other people who have done like lifting sports and how it affects them and their narcolepsy and things. So like luckily there are like communities there.

But um yeah, that's helpful is the online stuff and it's great that there are multiple venues now because I feel like when I was first looking things up and like dealing with being sick, there was pretty much just like patient forums that were diagnosis, specific, specific and it was just like people just complaining and like wanting training, but there was no like actual support. There was nothing like, oh, you know, this is what I did and it helped me. It was just like, everything sucks and everything sucks and everything sucks. I'm like, OK, this is not really. Yeah. Yeah. I'm, I'm sorry, it sucks, sucks for me too. But this isn't really, I didn't come to cry in a circle. I could do that at home. So, yeah, there's actually like, um there's like this narcolepsy like um website where people post um sometimes they can post like, like treatments that have worked really well for them. So then other people who are part of it can see it and um like a space for us to all kind of document, I guess, process part of a process that might be able to like, help each other and get more research that way too.

Is that the Reddit or is that something else. That's something else. It's called like, um, has narcolepsy in the name. I can assume that much work. Oh, ok. We'll figure it out. And even though we don't have the name now we'll put it in the show notes at least. Yes. Yeah, we'll get it. But it's somewhere in my emails where I get, like, updates all the time. But, um, they, I think it's a website that does more than just narcolepsy. Um I think they have other like categories that are these kind of like communities and groups. So it's not inspire, is it? No, I don't think so. Ok, I see. So I might be wrong though. I'll, I'll, I can um send it to you when I have a chance to find it. Yeah, that's fine. You can send it to me. Um So where can the people's find you and your businesses online? Yeah. Well, if you're interested in the G space, it's called Body Arc. So B O D Y A R C um R va, so Richmond, Virginia.

So you can find us on Instagram. I'm pretty sure it's like body underscore Arc underscore R VA. And then the other space is called Crescent Collective like Crescent moon. And that one is um R VA Crescent Collective. So, yeah, let's see. Do you have a um is your personal page open or is it like? Well, there's that too. I didn't want to overwhelm everybody with everything, but there's also my personal one which is the brand flake with ad the. So it's uh gosh, sorry. My dyslexic brain is like, oh, I hate when I have to spell out loud. Um, it's uh T H E B R A N D F L A K E, so that's where I just still dally and exist as myself. Mhm. Yeah. Already bird uh stories and such. Bird stories and such. So there we have it, gym things, narcolepsy and Brandy doing all the things and birds.

Yeah, hopefully no longer getting amped up on her stimulus. Oh Man. Sometimes I really sometimes my anxiety. I had to like me and lolly just like jump around like OK, I got to expend some energy right now because I'm so anxious. It sounds so terrible. That's fucked up. That is so that is such a fucked up. It's so annoying. It's like one week I'm so tired and the next I'm like, yeah, like, where are your ancestors at? We just need to talk like, can we talk about the genetics here? That's how I feel because my shit's all fucked up. But anyways, thank you. Uh But anyways, yeah, follow, follow Brandy, follow body a follow crescent collective and um yeah, nice talking to you. Yeah. Thank you for having me disable girls out. Thanks for listening to disabled girls who lift. We appreciate all of your support and everyone who's taken the time to show us some love. Don't forget to subscribe, rate or write a review of our channel.

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