Real-World Self-Care for Caregivers - Tiny Wins, Small Shifts, and Taking Back Your Power

[00:00:03] I'm Effie Parks. Welcome to Once Upon A Gene, the podcast. This is a place I created for us to connect and share the stories of our not-so-typical lives. Raising kids who are born with rare genetic syndromes and other types of disabilities can feel pretty isolating. What I know for sure is that when we can hear the triumphs and challenges from others who get it, we can find a lot more laughter, a lot more hope, and feel a lot less alone.

[00:00:31] I believe there are some magical healing powers that can happen for all of us through sharing our stories, and I'll take all the help I can get.

[00:00:43] Once Upon A Gene is proud to be part of Bloodstream Media. Living in a family affected by rare and chronic illness can be isolating, and sometimes the best medicine is connecting to the voices of people who share your experience.

[00:00:56] This is why Bloodstream Media produces podcasts, blogs, and other forms of content for patients, families, and clinicians impacted by rare and chronic diseases. Visit BloodstreamMedia.com to learn more.

[00:01:08] Hello, and welcome to the podcast. This is Once Upon A Gene, and I'm your host, Effie Parks. I'm so grateful that you're here today. If you're new, welcome. There's just a beautiful library full of so many topics on this podcast.

[00:01:22] You can type in the search bar, or you can message me and ask if there's a topic that you want to hear about. I hope that this show fulfills all of your wildest dreams. I hope it fills up your heart. I hope that it makes you feel connected to something and less alone, and I also hope that it inspires you to make change in your own life and in the world.

[00:01:43] If you haven't yet, I would also really appreciate a rating and a review on Apple Podcasts if you have a minute. People seeing reviews and being able to read through shows really helps them decide whether or not they want to listen to this one over another one.

[00:01:57] So hook a sister up, and I'd really appreciate it. I'm just coming off of quite a long week and a half of being out of town at a conference and then taking my kids out for a little festival, and I came home, and I literally cannot move my neck and my shoulders and my back, and I'm like in the wildest pain ever.

[00:02:17] And I'm staring at everything that I was supposed to get done today, and it got me thinking. It got me thinking about self-care and the barriers that are there in between it and the barriers we put up ourselves.

[00:02:33] And yeah, it just got me thinking about it all. And I know you probably are already rolling your eyes when I say self-care.

[00:02:41] And today I kind of, I want to challenge you a little bit. And I want to remind you what self-care is. When I say self-care, I am not talking about unrealistic things like spa days and getaways with your friends and all of this flashy stuff.

[00:03:02] Because if you've listened to any of this show about self-care, it's not that at all. It's the boring. It's the mundane. It's the habits. It's those things we do to sustain ourselves as well as possible.

[00:03:15] And I'll go through a couple of them that I think are pretty mandatory at the end of this show.

[00:03:21] So if you're hearing self-care and you're rolling your eyes and you're saying, nope, not for me. I can't. I can't. Just take a deep breath. Keep listening.

[00:03:30] I'm not going to give you any chores. And none of this is going to be realistic. And none of this is going to cost money. And I get it.

[00:03:41] But I want to just like noodle this around and maybe flip the script a little bit. Because we know it's not a luxury. It's more about survival for us.

[00:03:50] More importantly, it is really truly about making small, meaningful changes or addition that really keep you going and that make your life just a little easier, a little better, a little healthier.

[00:04:03] So let's talk about maybe why you're not giving yourself permission to do it and how we can shift that.

[00:04:09] Because I know a lot of us just really don't give ourselves permission and we feel guilt.

[00:04:14] And whatever it is, I feel like we can be disconnected from self-care entirely because of validation culture.

[00:04:23] I'll explain that a little bit.

[00:04:24] I think on social media, there are posts and conversations that constantly remind us of how hard caregiving is, how exhausting it is, how isolating it is.

[00:04:39] And listen, that's all true.

[00:04:43] Super, super true.

[00:04:44] Caregiving is ridiculously hard.

[00:04:47] And we absolutely need the space to acknowledge that.

[00:04:50] 100%.

[00:04:51] But I think here's where things can go sideways.

[00:04:54] When all you're getting is validation for how hard your life is and how hard this situation is, I really believe that it can trap you in that narrative.

[00:05:09] I've been listening to a lot of podcasts lately about our brain.

[00:05:13] And obviously, we hear a lot about neuroplasticity with our kids.

[00:05:17] I know that they were always saying, don't worry, Ford will catch up.

[00:05:20] Kids are so plastic.

[00:05:21] It's sort of like that.

[00:05:22] And it basically means that your brain creates and like forges new pathways based on what you focus on.

[00:05:30] So if you're constantly reinforcing how hard everything is, you're strengthening those this is hard pathways.

[00:05:38] Okay.

[00:05:39] Now, does this mean that we all have to pretend that it's all sunshine and rainbows?

[00:05:44] Duh.

[00:05:45] No, absolutely not.

[00:05:46] But it does mean that living in that this is impossible space isn't helping you move forward.

[00:05:53] There's another term for it.

[00:05:55] It's called learned helplessness.

[00:05:58] And it is a real thing.

[00:05:59] And the more that we're told something is hard, the more we are likely to believe that we can't change it.

[00:06:07] And that's the part I think that is the super, super, super dangerous loop, the dangerous path without a flashlight.

[00:06:13] We start to think that we're powerless.

[00:06:16] And listen, if all you're seeing online is how burdened you are, how impossible everything feels,

[00:06:21] eventually that does become the story that you tell yourself.

[00:06:24] And that story can make self-care pointless.

[00:06:27] Like, why bother?

[00:06:28] If I'm always going to be stuck in survival mode, why should I care?

[00:06:32] How can I?

[00:06:33] I can't.

[00:06:34] It's too heavy.

[00:06:35] But you're not stuck.

[00:06:37] And you are not powerless.

[00:06:39] So here's some tough love.

[00:06:40] And I've used it on myself.

[00:06:42] I'm not just spouting anything.

[00:06:43] Like, these are things that I have learned.

[00:06:45] And it's a constant practice, just like everything is.

[00:06:49] Constant validation of struggle might feel good in the moment.

[00:06:53] It might make you want to like and share.

[00:06:55] And I don't know, maybe it's a dopamine hit for a second.

[00:06:59] It feels good to be seen.

[00:07:00] That is real.

[00:07:01] That is valid.

[00:07:03] But if that's all you're getting, it's not helping you take care of yourself.

[00:07:08] In fact, it might even be keeping you from realizing just how capable you actually are.

[00:07:15] I really, really, truly believe that.

[00:07:17] My mom used to always have this quote on her fridge, and then I put it on my fridge like decades ago,

[00:07:23] that your attention flows where your energy goes.

[00:07:27] It is real.

[00:07:28] So think about who you're following on social media.

[00:07:30] Think about what you're ingesting.

[00:07:33] We all love to follow people who get us, people who share the reality of how hard caregiving can be.

[00:07:39] But if all you're seeing is your feed of people reminding you of how exhausted, burned out, and overwhelmed you are,

[00:07:46] ask yourself, really ask yourself,

[00:07:48] is this helping?

[00:07:50] Because again, if you're constantly reinforcing how hard things are,

[00:07:53] you're never going to see small opportunities to feel better,

[00:07:56] to do something for yourself, even if it seems tiny.

[00:07:59] Tiny. Tiny's big, remember?

[00:08:01] In our world, inchstones are big.

[00:08:03] You have to start reminding yourself about change.

[00:08:07] Follow those people who remind you to change.

[00:08:11] Again, small.

[00:08:12] People who say, yeah, this is hard,

[00:08:15] but here's what you can do to feel just a little better.

[00:08:19] That's where self-care really comes in.

[00:08:21] It's not about overhauling your life and pretending things aren't tough

[00:08:25] and buying things and going places and being pretty, whatever it is.

[00:08:29] It's about believing that you have control over something,

[00:08:33] even if it's drinking a glass of water or walking around your living room.

[00:08:37] So again, if your feed's full of reinforcing how stuck you are,

[00:08:40] how sad you are, how burdensome this life is,

[00:08:43] maybe it's time to unfollow.

[00:08:44] Maybe it's time to mute a few accounts while you encourage yourself to take some action.

[00:08:49] Because when we're stuck in constant validation of the hard stuff,

[00:08:54] we stop seeing our own power.

[00:08:57] Let's not forget rumination.

[00:08:58] Oof, this one was so, this one's hard.

[00:09:01] This one's hard for me.

[00:09:02] When you, you know, when you keep replaying negative encounters or thoughts or experiences,

[00:09:08] just kind of over and over and thinking about how you would have done them differently

[00:09:11] or what you should have done or blah, blah, blah.

[00:09:13] You know, those things can really make you have an eye twitch.

[00:09:17] And if we're always thinking about how burned out we are, same thing.

[00:09:21] We're going to stay burned out.

[00:09:22] You're never going to feel motivated to take care of yourself.

[00:09:24] And you're constantly going to be stuck in that loop.

[00:09:26] And I'm not saying this is like something you can flip, you know, your mindset overnight.

[00:09:30] These are teeny tiny, again, small shifts.

[00:09:33] Every single thing that I'm asking you to think about or do, do it in the smallest way possible.

[00:09:38] Really.

[00:09:38] Like the tiniest way possible.

[00:09:40] One little thing.

[00:09:41] Just put a little break in that cycle.

[00:09:45] Could you change just one thing to feel a little better today?

[00:09:49] And if so, what is it?

[00:09:51] You deserve to care for yourself, but you don't need a complete life overhaul to do it.

[00:09:56] So I'm going to go through some real self-care tips that are achievable right now, today.

[00:10:02] Here are a few of mine.

[00:10:03] Drink in your big girl water or your big boy water for all my dudes listening.

[00:10:08] I have this big jug.

[00:10:10] It's on my Amazon storefront link.

[00:10:12] It has a big handle.

[00:10:14] I can just hold onto it with my whole heart.

[00:10:18] And it has a lid and a straw.

[00:10:20] And I drink that water.

[00:10:23] You have to remember to hydrate.

[00:10:25] Not coffee, not juice, just water.

[00:10:29] It's so key to functioning.

[00:10:31] Really get yourself a water bottle that you love.

[00:10:34] Put a once upon a jean sticker on it and keep it with you.

[00:10:37] Keep it with you the whole time.

[00:10:38] Keep it nearby.

[00:10:40] It's the simplest form of self-care.

[00:10:43] And I promise you, staying hydrated will change your life, will change your skin, all of it.

[00:10:50] Two, move your body.

[00:10:51] I know this is where you're going to be perked up and be super annoyed with me that you don't

[00:10:57] have time to go to the gym or money to go to the gym or someone to babysit while you go to the gym.

[00:11:01] Do this at home, in your living room, in front of your kid that you're watching because there's no one there to help you.

[00:11:08] You don't need the gym or the perfect workout routine.

[00:11:10] Just move.

[00:11:12] Sometimes, I swear to you, I literally just walk from one end of my house to the other.

[00:11:17] Ford goes and plays at the garage and I have to stay there because the driveway is so steep.

[00:11:21] I literally just walk back and forth until he's done playing.

[00:11:24] I used to sit on this amazing soft chair I got because I spend hours out there.

[00:11:29] And then I was like, ding, ding, ding, big red firetruck, Effie.

[00:11:32] You're missing this whole opportunity of where you could actually get your steps in right now.

[00:11:36] So that's one of the ways I get my steps in now if I don't get to go out on a walk, like, you know, away from this house.

[00:11:43] And I get them in and I'm done.

[00:11:47] And I'd maximize that time where maybe I would just be sitting there doing something dumb, like looking at my phone.

[00:11:53] I challenge you to look at those moments in your house that you could do something.

[00:11:57] Really, I would not recommend push-ups because I hate push-ups.

[00:12:00] But what if you just did sit down and do something on the floor?

[00:12:04] What if you were stretching?

[00:12:06] Oh my God, stretching is so good for not just your body, but your brain.

[00:12:09] You could stretch for 10 minutes.

[00:12:11] It really helps clear your mind.

[00:12:14] And every single bit of movement counts.

[00:12:17] I really do recommend getting something to, like, count your fitness to.

[00:12:23] I think there's some affordable watches or, you know, Fitbits that do it.

[00:12:27] Ask in your local group for a free one if you can.

[00:12:30] Sometimes your phone even does it.

[00:12:31] I don't know.

[00:12:32] I learned this one from Rose Reef.

[00:12:35] Simplify your wardrobe.

[00:12:36] I mean, I think we all tried to forget.

[00:12:38] I think we all forgot trying to be cute a while ago.

[00:12:41] But just get comfortable.

[00:12:43] What I do now, I honestly live in all Fabletics clothes because I literally am working out all day.

[00:12:52] Meaning that taking care of a child is working out.

[00:12:57] Bending over and getting him in and out of his wheelchair.

[00:12:59] In and out of his bed.

[00:13:00] In and out of his chair.

[00:13:02] In and out of the minivan.

[00:13:03] Reaching over and locking that thing down.

[00:13:05] I mean, I have to be in workout clothes or I physically can't take care of Ford now.

[00:13:10] So I just own it.

[00:13:11] I get clothes that all just basically look like workout clothes.

[00:13:14] And I can all mix and match them.

[00:13:15] And I don't have to think about it.

[00:13:16] You could just wear all black.

[00:13:18] So you don't have to think.

[00:13:19] So when you go get changed, it isn't one more thing.

[00:13:21] You can literally put on anything top and bottom.

[00:13:24] And they're going to match.

[00:13:26] That's self-care.

[00:13:28] Simplify.

[00:13:28] Simplify those things that could be really annoying.

[00:13:31] And maybe it'll even make you throw some stuff out and you'll have a little more space in your room.

[00:13:36] That is definitely something I should also do.

[00:13:37] If you also can't leave, could you stand outside?

[00:13:40] Could you stand outside?

[00:13:42] Take off your shoes.

[00:13:43] Take off your socks.

[00:13:44] Stand in the grass.

[00:13:46] I know that sounds woo-woo, but I was raised by a woo-woo.

[00:13:48] She even made us hug trees.

[00:13:50] It works.

[00:13:51] Stand in the grass.

[00:13:53] Close your eyes.

[00:13:54] Take some deep breaths.

[00:13:56] Think about a mantra.

[00:13:57] Think about something that helps you.

[00:14:01] Maybe it is like all is well.

[00:14:03] Maybe all isn't well, but think about the mantra that makes your nervous system calm down.

[00:14:09] Feel your feet in the grass.

[00:14:10] It feels so good.

[00:14:13] I promise.

[00:14:14] Give yourself just a couple minutes for the fresh air and the breath.

[00:14:18] When is the last time you went outside, literally, outside your home?

[00:14:22] Think about it.

[00:14:23] That makes me actually go back to the water thing again.

[00:14:25] When is the last time you went pee?

[00:14:27] For real.

[00:14:28] When is the last time?

[00:14:30] Because you should be going often throughout the day.

[00:14:32] And if you're not, you're not drinking your water.

[00:14:35] We have to move this through.

[00:14:36] These are all things we can do.

[00:14:38] These are all little habits that we can make happen.

[00:14:41] And they're going to help our bodies and our minds.

[00:14:43] I promise.

[00:14:44] And then the other one is pat yourself on the back.

[00:14:49] Seriously.

[00:14:50] Celebrate yourself.

[00:14:51] Take a little credit.

[00:14:53] Parents have inchstones too.

[00:14:55] Maybe you did drink all of your water that day.

[00:14:58] Good job.

[00:14:59] Maybe you brushed your teeth before noon and flossed.

[00:15:04] Good job.

[00:15:05] Brushing your teeth is self-care.

[00:15:06] Brushing your teeth is self-care.

[00:15:09] Don't forget.

[00:15:10] Going to the dentist is self-care.

[00:15:13] Make it happen.

[00:15:14] These are wins.

[00:15:16] I don't...

[00:15:17] This is like...

[00:15:18] This is like the other episode that I was talking about milestones and like getting excited

[00:15:23] for things.

[00:15:23] It doesn't have to be big things to feel like you're accomplished.

[00:15:26] Little things make you feel so accomplished.

[00:15:29] I promise.

[00:15:31] Celebrate them.

[00:15:32] Just like you celebrate your kids.

[00:15:33] Because when you start paying attention to you, you realize how much you're actually

[00:15:39] getting done.

[00:15:40] And it's awesome.

[00:15:42] And then I really believe that it gives you the energy to do it again and again and again.

[00:15:46] And then it's a habit.

[00:15:48] And then it's fun.

[00:15:50] And then you can do more.

[00:15:53] It really builds off of itself and it really helps sustain you.

[00:15:57] So the bottom line, self-care isn't about luxury.

[00:16:00] It's about seeing yourself as someone who's worthy of a moment of peace, of a moment of

[00:16:08] care.

[00:16:08] If you're constantly validating the hard stuff, you're never going to see these small changes

[00:16:13] that you can make to feel better.

[00:16:15] And you can feel better.

[00:16:18] It's honestly just like one small step a day and then another one tomorrow.

[00:16:24] You are not stuck.

[00:16:26] You are capable of so much more than you give yourself credit for.

[00:16:30] I swear to you.

[00:16:31] And you deserve to take care of yourself, even if it's just for a minute.

[00:16:36] So go do it.

[00:16:38] Drink the water.

[00:16:39] Take the walk.

[00:16:41] Stand outside.

[00:16:43] You got this.

[00:16:44] I hope you've been enjoying this podcast.

[00:16:47] If you like what you hear, please share this show with your people.

[00:16:51] And please make sure to rate and review it on iTunes or wherever you get your podcasts.

[00:16:56] You can also head over to Instagram, Facebook, and Twitter to connect with me and stay updated

[00:17:01] on the show.

[00:17:02] If you're interested in sharing your story or if you have anything you would like to contribute,

[00:17:07] please submit it to my website at effieparks.com.

[00:17:10] Thank you so much for listening to the show and for supporting me along the way.

[00:17:14] I appreciate you all so much.

[00:17:16] I don't know what kind of day you're having, but if you need a little pick-me-up, Ford's

[00:17:20] got you.