Navigating Physical and Emotional Stress and Noticing Where It Shows Up In Our Body As A Rare Disease Caregiver - With Christy Foster

[00:00:03] [SPEAKER_01]: I'm Effie Parks. Welcome to Once Upon A Gene, the podcast. This is a place I created for us

[00:00:10] [SPEAKER_01]: to connect and share the stories of our not so typical lives. Raising kids who are born

[00:00:15] [SPEAKER_01]: with rare genetic syndromes and other types of disabilities can feel pretty isolating.

[00:00:20] [SPEAKER_01]: What I know for sure is that when we can hear the triumphs and challenges from others

[00:00:25] [SPEAKER_01]: who get it, we can find a lot more laughter, a lot more hope, and feel a lot less alone.

[00:00:31] [SPEAKER_01]: I believe there are some magical healing powers that can happen for all of us through sharing

[00:00:36] [SPEAKER_01]: our stories and I'll take all the help I can get.

[00:00:43] [SPEAKER_00]: Once Upon A Gene is proud to be part of Bloodstream Media. Living in a family affected by rare

[00:00:49] [SPEAKER_00]: and chronic illness can be isolating, and sometimes the best medicine is connecting

[00:00:53] [SPEAKER_00]: to the voices of people who share your experience. This is why Bloodstream Media

[00:00:58] [SPEAKER_00]: produces podcast, blogs, and other forms of content for patients, families, and clinicians

[00:01:03] [SPEAKER_00]: impacted by rare and chronic diseases. Visit bloodstreammedia.com to learn more.

[00:01:08] [SPEAKER_01]: Hello my friends, and welcome back to the show. This is Once Upon A Gene and I'm your host Effie

[00:01:13] [SPEAKER_01]: Parks. Thank you so much for taking the time out of your precious, precious day to

[00:01:18] [SPEAKER_01]: pop on this show wherever you are. I know some of you are walking. I know some of

[00:01:23] [SPEAKER_01]: you are in bed. I know some of you are in the shower. I know some of you are on a walk.

[00:01:28] [SPEAKER_01]: Whatever you're doing, thank you so much. I am so grateful for you. You are the reason this show

[00:01:34] [SPEAKER_01]: has breath in it and if you could please share this show with someone today. Share an episode,

[00:01:40] [SPEAKER_01]: your favorite one, share the link, put it on your social media, put it on your Instagram.

[00:01:45] [SPEAKER_01]: Oh my gosh! I would be so grateful if you write a rating or review on Apple podcasts.

[00:01:49] [SPEAKER_01]: It helps everyone decide whether or not they want to listen to this show when they're

[00:01:53] [SPEAKER_01]: searching for this type of content and you and I both know how important it is.

[00:01:57] [SPEAKER_01]: So thank you so much for that. I'm really excited for today's episode. It's extra special. You

[00:02:03] [SPEAKER_01]: might have remembered if you've been here for a while or if you're a very good student,

[00:02:08] [SPEAKER_01]: all the way back, episode 29 my sister Kristi Foster joined. She was the reason for my

[00:02:15] [SPEAKER_01]: famous oxygen tanks that I kept on my fridge that I talk about all the time that have

[00:02:19] [SPEAKER_01]: been a lifeline for me. And today we're having her on the show again and probably several more

[00:02:24] [SPEAKER_01]: times because she's just a, she's my mother earth and she made a post the other day about jaw

[00:02:29] [SPEAKER_01]: pain and how you know why and how it shows up and the stress and the anger and the fear

[00:02:35] [SPEAKER_01]: and the fight or flight stuff that caregivers like us all feel. I'm just gonna kind of go

[00:02:39] [SPEAKER_01]: into that a little bit and talk about why you need to notice it, how you can do that

[00:02:43] [SPEAKER_01]: and some tips to move through it. So it's a really great episode. I hope you love my

[00:02:47] [SPEAKER_01]: conversation with her. It's so hard not to just deeply listen to Kristi when she speaks. I feel

[00:02:54] [SPEAKER_01]: like she knows everything and she's like my guru. So check out her website, it's KristiFoster.co

[00:03:01] [SPEAKER_01]: to learn about all of her educational background and just learn some really important things.

[00:03:06] [SPEAKER_01]: She puts on a lot of conferences and continued education and then also sort of like

[00:03:12] [SPEAKER_01]: deep dives into certain aspects of her work that you can go join in sometimes online,

[00:03:15] [SPEAKER_01]: sometimes in person. Anyways, please welcome my beautiful sister, Kristi Foster. Hello sister,

[00:03:22] [SPEAKER_01]: Kristi. Welcome back to the show. Thank you. Yes, I'm so glad you're here. I constantly am like,

[00:03:26] [SPEAKER_01]: oh my gosh, I need to have Kristi on and talk about that or I'm telling people stop doing that

[00:03:30] [SPEAKER_01]: and go get somatic therapy. Anyways, I'm so happy to have you back. You've been one of my

[00:03:35] [SPEAKER_01]: most treasured and special teachers and just all around health promoters in my journey. So

[00:03:44] [SPEAKER_01]: I totally believe in every single thing that you do and from personal experience. And I'm

[00:03:49] [SPEAKER_01]: excited to introduce you to more of an audience than I think you were like my fourth episode or

[00:03:54] [SPEAKER_01]: something way back in the day. So I think I was too. I thought I was a little baby podcaster.

[00:03:59] [SPEAKER_01]: Okay, so the other day I reshared one of your Instagram posts. So it'll be linked in the

[00:04:05] [SPEAKER_01]: show notes, but please go and make sure to follow Kristi. It's Kristi.f13 on Instagram.

[00:04:11] [SPEAKER_01]: And again, I'll have it linked. But you had a post that said three ways emotions can influence jaw

[00:04:16] [SPEAKER_01]: pain. And then like a million people responded in my DM saying like, Oh yeah, that's why. Oh,

[00:04:22] [SPEAKER_01]: yep. Mm hmm. I will have that problem now and just like on and on and on. And I was like,

[00:04:25] [SPEAKER_01]: okay, it's time to have Kristi back. So let's talk about it today. We'll

[00:04:29] [SPEAKER_01]: we'll talk a little bit about the jaw and then other manifestations from from that and

[00:04:33] [SPEAKER_01]: get some insight. I know that people are always searching for new ways to understand

[00:04:37] [SPEAKER_01]: and to find help because the standard answer I feel like for everyone is go to therapy,

[00:04:42] [SPEAKER_01]: go to therapy, which yes, therapy has a place, but therapy isn't the answer for everything all the

[00:04:48] [SPEAKER_01]: time in this exact way. So right, I'm going to let you lead off because I don't even know what my

[00:04:52] [SPEAKER_01]: first question is really, but can you talk about chronic stress and and how that leads

[00:04:57] [SPEAKER_01]: to muscle tension and clenching our jaw and all of that stuff? Yeah. So let me give you

[00:05:02] [SPEAKER_02]: a little bit of structure first around the body and what emotions do and how they

[00:05:09] [SPEAKER_02]: show up when they're not expressed, how they can show up when there's been holding of not feeling

[00:05:16] [SPEAKER_02]: like you have any control of any type of trauma. The muscle tissue in our bodies

[00:05:23] [SPEAKER_02]: somatically represents our emotional holding and our bone structure represents our thinking mind.

[00:05:30] [SPEAKER_02]: So there's there's two different ones. The structure in our body holds us up, holds up the body,

[00:05:36] [SPEAKER_02]: the muscle tissue helps us move and joints and creates flexibility. And when there is a trauma

[00:05:45] [SPEAKER_02]: or stress prolonged stress especially what it starts to do is literally starts to create pain

[00:05:53] [SPEAKER_02]: because that part of the body, it will land in different parts of our body and

[00:05:58] [SPEAKER_02]: every that's probably its own podcast. But depending on where it lands, that's where

[00:06:04] [SPEAKER_02]: pain can happen. So for example, if someone is having low back pain oftentimes that represents

[00:06:11] [SPEAKER_02]: not feeling supported, not feeling like you have enough financial means to support yourself and

[00:06:19] [SPEAKER_02]: or your family. And then over time that worry literally becomes dense in the body and the

[00:06:27] [SPEAKER_02]: tissue, the muscle tissue contracts which creates pain. So it starts out as one thing.

[00:06:34] [SPEAKER_02]: And if it's not handled or given attention, it starts to create pain and over time,

[00:06:42] [SPEAKER_02]: the body will force you eventually to pay attention because the pain sometimes for people that I see

[00:06:49] [SPEAKER_02]: can get so great. And that can be emotional pain or physical pain that they're forced to say, okay,

[00:06:57] [SPEAKER_02]: uncle, what can I do to help me feel better? And my work is really bring in simplicity to,

[00:07:08] [SPEAKER_02]: okay, this is where we're at. Here are some things that you can begin to become aware of

[00:07:13] [SPEAKER_02]: your own patterns and implement a few simple things. Yes, therapy is a thing. It's one of those

[00:07:21] [SPEAKER_02]: pieces, but there's many parts that we can have access to that you can do yourself to actually,

[00:07:28] [SPEAKER_02]: I think regain control over or a sense of control over the pain, but also not feeling

[00:07:36] [SPEAKER_02]: like you're in control. Because when we're in pain, emotionally or physically, it is really

[00:07:43] [SPEAKER_02]: difficult to take care of your kids. It's difficult to go to work. It's difficult to get sleep.

[00:07:49] [SPEAKER_02]: All of these things start to compound. And and then it's kind of like,

[00:07:56] [SPEAKER_02]: I liken it to Dorothy in the Wizard of Oz when the tornado spinning,

[00:08:00] [SPEAKER_02]: and your house is spinning the cow, and TM, the dog, the witch, all of these things. And you're

[00:08:06] [SPEAKER_02]: like, I don't know what to do. And then you kind of go into a state of feeling frozen or a fight

[00:08:13] [SPEAKER_02]: or flight response, because there's it's like too much too fast too soon. And then we don't

[00:08:20] [SPEAKER_02]: know what to do. And so part of my work is to educate people to be aware of when that

[00:08:28] [SPEAKER_02]: pattern shows up. And what are a few things you can do about it? So it doesn't consume you because

[00:08:35] [SPEAKER_02]: everyone has that happen. And I think as you become more aware of your own responses and

[00:08:44] [SPEAKER_02]: patterns, it could happen less. So that's kind of the structure that I want to lay.

[00:08:49] [SPEAKER_02]: And I'm assuming Fee with people that listen to your podcast, all of the above happens, right?

[00:08:56] [SPEAKER_02]: 100%. And so I think to keep it simple and understand that two things, you're not broken.

[00:09:04] [SPEAKER_02]: And there is a lot of help out there for that feeling because feeling like that is terrible.

[00:09:10] [SPEAKER_02]: And we've all been there. And I also think that having a disabled child makes it exponentially

[00:09:18] [SPEAKER_02]: more. And unless you have that, I don't think people could comprehend what that is.

[00:09:23] [SPEAKER_02]: That's so my perception. But how would someone know, except you, your listeners?

[00:09:30] [SPEAKER_01]: Yeah, absolutely. We're definitely going to turn some things into a series with Christy because

[00:09:35] [SPEAKER_01]: when I was just like rattled off, just even a teeny tiny little piece of the pie that affects

[00:09:43] [SPEAKER_01]: caregivers on a daily basis. It was almost funny because I didn't even really go into

[00:09:49] [SPEAKER_01]: the meat of it. And it was so much already and it's normal land. So it's just, it's so

[00:09:54] [SPEAKER_01]: magnified and it's so chronic. And obviously it affects people differently. And then something

[00:09:58] [SPEAKER_01]: else you said made me really very aware of past for me in that I could pinpoint several places

[00:10:06] [SPEAKER_01]: on my body that hurt at certain points in my life, depending on what I was dealing with

[00:10:11] [SPEAKER_01]: or not dealing with or going through and how my pain was different and where it was placed.

[00:10:16] [SPEAKER_01]: And so that's very interesting to even just sort of be mindful of moving forward. But you also said

[00:10:22] [SPEAKER_01]: that, so you're going to teach us how to notice things, which would be very helpful because I feel

[00:10:27] [SPEAKER_01]: like it's really easy to go into that place where you kind of lock everything away. And

[00:10:34] [SPEAKER_01]: it does terrible bad things when you let that happen. Some people apparently, you know,

[00:10:39] [SPEAKER_01]: some people can obviously fly off the handle too, right? But I think that locking away thing

[00:10:43] [SPEAKER_01]: is so common because you still have to manage everything. Right. And the locking away is a

[00:10:49] [SPEAKER_02]: one way of saying it, because emotions have to go somewhere. Yeah. They can end up as an explosion

[00:11:00] [SPEAKER_02]: over a period of time because they can't stay long term. It's going to come out through pain.

[00:11:07] [SPEAKER_02]: It might come out through explosion. It might show up as implosion, which is

[00:11:13] [SPEAKER_02]: repression and holding back of emotions, which is kind of where we're going to lead into today

[00:11:19] [SPEAKER_02]: around the jaw because the jaw specifically is expression. We open our mouth. Ah,

[00:11:26] [SPEAKER_02]: we hear sound that comes from our throat and our mouth forms words. And when we are wanting

[00:11:35] [SPEAKER_02]: to express something and there's a various things that we can talk about that it creates a challenge,

[00:11:41] [SPEAKER_02]: what happens in the jaw is it will hold and clench and tighten because there is like a

[00:11:48] [SPEAKER_02]: feeling of perhaps stuckness. And okay, and how do I do that? And why does it matter?

[00:11:55] [SPEAKER_02]: And what's it going to do for me? So that's probably the easiest way to begin is to understand

[00:12:02] [SPEAKER_02]: that little part because even us being on a podcast is expression and people,

[00:12:10] [SPEAKER_02]: connection with people that actually helps jaw pain because we're expressing what we're

[00:12:17] [SPEAKER_02]: feeling other people can receive that and their nervous system settles because they feel

[00:12:23] [SPEAKER_02]: heard and understood. So really important to pull in all of the aspects around how

[00:12:30] [SPEAKER_02]: and why someone might hold tension in their jaw, which is expression. So we could start there,

[00:12:38] [SPEAKER_02]: which I think would be a good place to start since we're talking about it and so many people,

[00:12:45] [SPEAKER_02]: depending on your life experience, can be really challenged with expression.

[00:12:50] [SPEAKER_01]: Yeah, absolutely. Let's start there, especially since that's kind of what pinged me on this

[00:12:54] [SPEAKER_01]: idea. It made me think of, yeah, being angry, there's a lot of anger in this,

[00:13:00] [SPEAKER_01]: depending on what stage you're in, especially the level of it and then also, yeah, just not being able

[00:13:06] [SPEAKER_01]: to reach out about it or understand it or speak about it or have anyone else that understands

[00:13:12] [SPEAKER_01]: it so you don't have anyone to talk to all of those things, right? That I think about when I

[00:13:16] [SPEAKER_01]: think about the mouth and I think about my own jaw pain. And I feel like what you just said was

[00:13:21] [SPEAKER_01]: kind of an aha moment because my clenching at nighttime used to be so severe that even with

[00:13:27] [SPEAKER_01]: a mouth guard, my teeth were still breaking. But since the podcast started and all I've been doing

[00:13:33] [SPEAKER_01]: is communicating with other people, I have almost felt like, I wonder if I need my mouth guard?

[00:13:40] [SPEAKER_02]: It's a good example though, Effie, because it takes you out of isolation.

[00:13:44] [SPEAKER_01]: Yeah. So let's talk about the jaw, Christy, tell me what somatic therapy techniques or

[00:13:50] [SPEAKER_01]: sort of principles do people need to know about helping to release this tension in their jaw or

[00:13:56] [SPEAKER_01]: noticing it or whatever? Well, I would like to start with creating an understanding about

[00:14:04] [SPEAKER_02]: so the jaw holds your teeth. It's a joint that moves up and down to break up our food.

[00:14:11] [SPEAKER_02]: And somatically, in the body, the joints and that includes your joint in the jaw,

[00:14:19] [SPEAKER_02]: they represent flexibility and adaptability. And they are representation of, can we be flexible

[00:14:27] [SPEAKER_02]: emotionally to the challenges in life and new situations? So joints emotionally actually have

[00:14:36] [SPEAKER_02]: quite a bit to do with how we're holding it, depending on what goes on in our head or our

[00:14:42] [SPEAKER_02]: experience around it. Joints in general, they are providing support and stability. And they also

[00:14:51] [SPEAKER_02]: when they become rigid, not just the jaw, there is a pattern of resistance to change,

[00:15:00] [SPEAKER_02]: a pattern of inflexibility, perhaps a pattern of rigidity in the way we think, because those thoughts

[00:15:11] [SPEAKER_02]: literally create a response in the body that manifests as that is true. The joints also so

[00:15:20] [SPEAKER_02]: they bear weight, so they're supporting us. So how can we better support ourselves?

[00:15:26] [SPEAKER_02]: They really represent emotional flexibility and being able to adjust to what is coming at us

[00:15:35] [SPEAKER_02]: all the time, because life is constantly changing and moving. And so for your listeners, I'd like

[00:15:43] [SPEAKER_02]: you to ask yourself, okay, so how was expression modeled for me growing up? What was that like

[00:15:51] [SPEAKER_02]: where your parents able to allow you to be angry? Many, many people that was never allowed.

[00:16:00] [SPEAKER_02]: And being angry sometimes was a spanking, sometimes was go to your room, you can't be around me when

[00:16:07] [SPEAKER_02]: you're angry. And so there's this thing around anger that the relationship that it's bad or wrong

[00:16:14] [SPEAKER_02]: to express anger. And anger is a healthy emotion. Anger is like a fire, and it moves through us and

[00:16:24] [SPEAKER_02]: it's it's healthy and it should move through us. But when we repress it, it literally starts to

[00:16:29] [SPEAKER_02]: smolder in our bellies. Sometimes it can turn into heartburn, literal the word heartburn,

[00:16:38] [SPEAKER_02]: because there's a repression of emotion and a pushing down and a swallowing of. And you'll hear

[00:16:46] [SPEAKER_02]: people say, I just swallowed that. I didn't say anything. I kept my mouth shut. We speak

[00:16:53] [SPEAKER_02]: somatically quite often. And when I hear, I just keep my mouth shut. What I would tell you

[00:17:02] [SPEAKER_02]: most often is the case, jaw pain, because that holding down and swallowing is what over time

[00:17:11] [SPEAKER_02]: creates the tension in the muscles around the joint, which is contraction. And then over time,

[00:17:20] [SPEAKER_02]: like you said, Effie, you had to wear a mouth guard, you clenched through the mouth guard, many

[00:17:24] [SPEAKER_02]: people will break their mouth guard because the tension is so great. And then you started

[00:17:29] [SPEAKER_02]: doing the podcast and expressing and I would say also being witnessed by other people in your community

[00:17:38] [SPEAKER_02]: that yeah, Effie, I get it. I see you. I understand to the degree that we can, but it's the community

[00:17:47] [SPEAKER_02]: and the expression with that that actually does a lot of healing because the emotion comes up

[00:17:53] [SPEAKER_02]: and it moves out. And so looking at some of the patterns from your origin, so questions I would

[00:18:02] [SPEAKER_02]: ask, is there a fear around conflict? Some people they can't do conflict because it activates them

[00:18:11] [SPEAKER_02]: so much. And then the compression and the contraction in the jaw, let alone different parts of the

[00:18:18] [SPEAKER_02]: body begins to happen. Sometimes there's immense guilt and shame held around expression, period,

[00:18:29] [SPEAKER_02]: because you're supposed to be stoic, you're supposed to be grateful, you're supposed to

[00:18:34] [SPEAKER_02]: count your blessings, there's all these supposed to or shoulds. And that's not real. What's real

[00:18:40] [SPEAKER_02]: is life happens and it's not always pleasant. And so the pattern of being stoic or putting away

[00:18:51] [SPEAKER_02]: your feelings because you feel guilty creates pain, emotional pain first, sometimes isolation,

[00:18:59] [SPEAKER_02]: sometimes rage, because it doesn't have a place to go. And you can see how over time

[00:19:06] [SPEAKER_02]: it's like, it's like water dripping. At first water is, you know, it just drips and it moves,

[00:19:14] [SPEAKER_02]: but over a while it starts to destroy whatever it is it's dripping on. That's the best way I can

[00:19:20] [SPEAKER_02]: explain how the body starts to get sick and or create pain is because it can't take one more drop.

[00:19:31] [SPEAKER_02]: And the belief that you should be able to handle your emotions and not rely on others

[00:19:39] [SPEAKER_02]: is also taught. And it's not the most healthy way to live because sometimes those emotions are so big,

[00:19:51] [SPEAKER_02]: they can swallow you whole. And having a community which is what you've created, Effie, is so

[00:19:59] [SPEAKER_02]: valuable because people can listen, feel understood and express. Oh, I heard this on a podcast day,

[00:20:06] [SPEAKER_02]: I totally get that it makes me so angry when I say hooray, because that's so important to

[00:20:14] [SPEAKER_02]: express and also begin to learn a language for those emotions. And one of the one of

[00:20:21] [SPEAKER_02]: the last things that I'll talk about is past traumas. So sometimes if that happened in the past,

[00:20:29] [SPEAKER_02]: and it could be in your childhood, it could be in a current relationship.

[00:20:34] [SPEAKER_02]: When you expressed something, you got in trouble, for example, or sometimes people will get,

[00:20:41] [SPEAKER_02]: you know, smacked across the face, there's lots of different things that happen with trauma

[00:20:46] [SPEAKER_02]: that will shut a person down to not speak. So what I would suggest is kind of going through that list

[00:20:54] [SPEAKER_02]: and going, okay, what's my pattern? What's happened? What was I taught about communicating how I feel?

[00:21:03] [SPEAKER_02]: And it's very easy to look at your mother or your father and see the pattern

[00:21:09] [SPEAKER_02]: and which one fits you, which pieces fit you. So you have a starting point of what are you doing?

[00:21:18] [SPEAKER_02]: What is my pattern? And then we can move to some ideas to shift the pattern. It's not who you

[00:21:25] [SPEAKER_02]: are, it's something that was created based on your life experience. So to not get attached to

[00:21:31] [SPEAKER_02]: I must really be screwed up. I'm broken. I can't ever get fixed. But to be open to, okay,

[00:21:38] [SPEAKER_02]: that's where I came from. That's how I was raised. And there's plenty of ideas and resources to

[00:21:46] [SPEAKER_01]: begin to shift that so it's not so hard. 100%. I've done that personally with the way I grew up.

[00:21:54] [SPEAKER_01]: There's so many pins I want to put in this. And I know that we can't go into everything.

[00:21:58] [SPEAKER_01]: But I think about when you said the thing about flexibility and I think all of us parents who

[00:22:04] [SPEAKER_01]: are raising kids with so much uncertainty and who are sick are forced to be flexible.

[00:22:10] [SPEAKER_01]: So what is it about being forced to be flexible? Because yes, we do get good at being flexible

[00:22:15] [SPEAKER_01]: and adapting. But then there's other parts where we literally can't be flexible because

[00:22:20] [SPEAKER_01]: we have to do everything a certain way to make sure our kids safe. But the flexibility aspect

[00:22:26] [SPEAKER_01]: is also not necessarily a whimsical flexibility choice. And we have to be flexible because there is

[00:22:31] [SPEAKER_01]: never any kind of certainty in the day to day. Does that make any sense?

[00:22:36] [SPEAKER_02]: Yes, absolutely it does. Because of those, the reality of yes, I have to be flexible and

[00:22:44] [SPEAKER_02]: there's a piece in there too of feeling forced and you use the word have to.

[00:22:51] [SPEAKER_02]: Sometimes there isn't a choice and I'm going to invite the idea that maybe there's not a choice in

[00:22:59] [SPEAKER_02]: that moment, but there could be later that day. And to give you some choices to

[00:23:05] [SPEAKER_02]: re-regulate your nervous system because that's true and that self care and we can go into

[00:23:12] [SPEAKER_02]: that because over time if if you're feeling like there is no choice, literally the body

[00:23:19] [SPEAKER_02]: has to continue to contract, which creates pain because it's that push life happens. We push again

[00:23:26] [SPEAKER_02]: and push again and somewhere along the way your tire is going to blow. So to add some pieces

[00:23:34] [SPEAKER_02]: in there around self care and regulation if you felt forced that day and you had to be flexible

[00:23:40] [SPEAKER_02]: and adjust because someone didn't show up but now you can't go and or your kid got sick.

[00:23:45] [SPEAKER_02]: There's so many pieces Effie that are in there. Yes and let's add some coping mechanisms that

[00:23:53] [SPEAKER_02]: can be really, really helpful in a very quick minute.

[00:23:58] [SPEAKER_01]: Yes. Okay. And the other part and now I'm kind of losing of my train of thought of how you

[00:24:04] [SPEAKER_01]: brought it up exactly but it made me think of, you know, I see reports all the time online

[00:24:08] [SPEAKER_01]: and they say 95% of rare disease caregivers are depressed and that statement really,

[00:24:15] [SPEAKER_01]: really activates me in a negative way because I do not think that is true. I think depression is

[00:24:21] [SPEAKER_01]: absolutely obviously a very real and very serious thing but what I think the bigger

[00:24:25] [SPEAKER_01]: percentage of that sort of pull is that it's not depression, it is the brace for continuous

[00:24:34] [SPEAKER_01]: impact for the rest of your life. So how do you build up that resilience or whatever to let it in

[00:24:41] [SPEAKER_01]: and through and out because it's going to happen today and tomorrow and the next day and the next

[00:24:45] [SPEAKER_01]: day and the next day. It's not a once in a while thing like you expect normal life to be, it is

[00:24:51] [SPEAKER_01]: constantly and so how do you always get kicked down the stairs and come back up without

[00:24:58] [SPEAKER_01]: being super affected and maybe doing it better each time?

[00:25:04] [SPEAKER_02]: It's a good question. I would tell you one of the key pieces is to ask yourself because after

[00:25:14] [SPEAKER_02]: you said it right, I don't know if I would agree it's not just depression, it's many, many, many

[00:25:20] [SPEAKER_02]: things and someday it might be depression, some days it might be anxiety, some days it might

[00:25:26] [SPEAKER_02]: be rage, some days it might be resentment. Those are all really strong emotions and you may not

[00:25:33] [SPEAKER_02]: be sure which one might show up that day. So what I can offer is okay, what are some patterns which

[00:25:42] [SPEAKER_02]: we just talked about? What are your avenues of expression because if you're able to express this

[00:25:48] [SPEAKER_02]: was a really hard day and all of the parts in that and be witnessed by a friend, which is connection,

[00:25:56] [SPEAKER_02]: which is one of the keys, it will help your nervous system, it will help you regulate again.

[00:26:03] [SPEAKER_02]: Connection is so important and to connect with someone who isn't going to fix you,

[00:26:10] [SPEAKER_02]: isn't going to say well and you just and that whole what's the other term that I

[00:26:17] [SPEAKER_02]: will at least, I don't like that phrase to begin a sentence either. Those kind of things

[00:26:25] [SPEAKER_02]: if you can have a person that you can call and talk to or vent and know that being witnessed in

[00:26:34] [SPEAKER_02]: the grief, the rage, the sadness, possibly shame that it takes the edge off doesn't make it go away

[00:26:44] [SPEAKER_02]: because you can't make it go away. However, and what you can do is soften the hit a little bit.

[00:26:51] [SPEAKER_01]: Yeah, I love that taking the edge off. It's profound when your edges they're sharp.

[00:26:58] [SPEAKER_01]: Yeah, well and I think another reason that it's so bothersome to me is that

[00:27:04] [SPEAKER_01]: so many of us are genuinely happy, right? And we find happy and to have that diminished when

[00:27:14] [SPEAKER_01]: it has taken so much work and reflection and practice to just be dismissed as depression

[00:27:21] [SPEAKER_01]: and mental health issues when our feelings are real and they're important and they matter

[00:27:28] [SPEAKER_01]: and they're not bad. So I just don't like that line that gets drawn because I think it confuses

[00:27:34] [SPEAKER_02]: very stressed out caregivers. Yeah, and it labels people and that I don't think is

[00:27:43] [SPEAKER_02]: helpful all of the time sometimes it has its place but to make more room for yourself

[00:27:51] [SPEAKER_02]: and the emotions that are attached to part of having a disabled child and being a caregiver

[00:27:58] [SPEAKER_02]: that is 24 seven that all of those emotions are allowed totally in a safe way. Right? Let me just

[00:28:07] [SPEAKER_02]: put that little bit because it does need to be in a safe way in a healthy way. So like for instance,

[00:28:14] [SPEAKER_02]: we talked about connection maybe after your kids are not around because I don't think they

[00:28:20] [SPEAKER_02]: should hear you vent for you to call someone and talk about the day and the challenges of the day.

[00:28:27] [SPEAKER_02]: And that is one way to move some of that literally out of the body and especially if you are a

[00:28:34] [SPEAKER_02]: clincher I'm telling you I can't guarantee you however, I know that it will help shift

[00:28:42] [SPEAKER_02]: the pain in your job because someone is holding space for you and listening as you express.

[00:28:48] [SPEAKER_01]: So many of our caregivers if not most 95% of them have that person online. They're not in person

[00:28:57] [SPEAKER_01]: people and some of them are across the world. So is it the same as typing your dms out in the

[00:29:02] [SPEAKER_01]: middle of the night to that person that you know is there? Should you use the microphone button

[00:29:06] [SPEAKER_01]: and say it into their dms or do you or is it a phone call? I think it could be all three.

[00:29:12] [SPEAKER_02]: I think that expressing through your voice is very different than typing

[00:29:17] [SPEAKER_02]: because it's literally moving out of you and you're going to hear your own voice

[00:29:23] [SPEAKER_02]: sometimes the quiver sometimes the rage and that movement because you'll go as it comes up

[00:29:30] [SPEAKER_02]: it comes up and then sometimes tears come right. And that's like your nervous system

[00:29:37] [SPEAKER_02]: your body taking a deep breath as tears come or as yelling comes sound is really really important

[00:29:44] [SPEAKER_02]: in expression and typing it out for sure helps because we're moving it out of our bodies through

[00:29:51] [SPEAKER_02]: our hands and I would also encourage someone if they like to express through typing to journal

[00:29:59] [SPEAKER_02]: but I encourage you to use a pen and paper because it's different when you use your pen

[00:30:04] [SPEAKER_02]: and paper versus on an electronic device and I would do a little bit of all three

[00:30:12] [SPEAKER_02]: and maybe shake them up and see which one which one is the most effective especially

[00:30:19] [SPEAKER_01]: when there's been a lot of stress. So that other part of the jaw piece it's causing headaches

[00:30:26] [SPEAKER_01]: what piece is taking it from the clenched jaw to having headaches? Well there's a few parts

[00:30:33] [SPEAKER_02]: to that so physically when you're clenching you have muscles right right above your ear and

[00:30:40] [SPEAKER_02]: then come down and attach to where the jaw opens and closes that muscle gets really really tight

[00:30:46] [SPEAKER_02]: and you have soft tissue and muscle completely covering your cranium your head and think of it

[00:30:55] [SPEAKER_02]: like a surround wrap if my jaw is clenched and it's like me grabbing a piece of surround wrap

[00:31:03] [SPEAKER_02]: and it pulls like super super tight all the way across the head and the eyes and the back of

[00:31:10] [SPEAKER_02]: the neck and then that contraction continues to happen over time and that's one of the reasons

[00:31:17] [SPEAKER_02]: why it can cause headaches because there's so much pressure being created and then it

[00:31:22] [SPEAKER_02]: is also pulling the muscle that is all around your head and neck even tighter especially if you are

[00:31:30] [SPEAKER_02]: swallowing what you would like to say. If you are the tendency for people that clench a lot is to

[00:31:38] [SPEAKER_02]: chew on ice, chew on pens, chew gum those things actually make it worse so if you do that don't

[00:31:46] [SPEAKER_02]: do that it's really difficult because it becomes like a something that people do because it hurts

[00:31:53] [SPEAKER_02]: and or it's a nervousness and so they like to chew gum. If you have jaw pain or headaches I would

[00:31:59] [SPEAKER_02]: encourage you to find something to suck on versus bite on because your muscles in your jaw and

[00:32:07] [SPEAKER_02]: your head are already working over time because of the clenching and or grinding

[00:32:13] [SPEAKER_02]: and if you can stop doing that and if you do get headaches I highly recommend a mouth guard like 100

[00:32:21] [SPEAKER_02]: percent. I work on many many people in their mouths with craniosacral therapy and it really

[00:32:29] [SPEAKER_02]: really takes the pressure off it doesn't make it go away necessarily but it will keep you from

[00:32:35] [SPEAKER_02]: getting headaches. I've worn a mouth guard oh my goodness probably 25 years now and I would love

[00:32:43] [SPEAKER_02]: to tell you that I don't need one I do because when I don't wear one I get headaches and part of

[00:32:51] [SPEAKER_02]: that is car accidents I've had four big car accidents I fell when I was little broke the

[00:32:58] [SPEAKER_02]: teeth out of my mouth so you do have the physical aspects as well and then if stress

[00:33:02] [SPEAKER_02]: is added on to that it's the perfect storm of clenching and headaches and also if people have

[00:33:12] [SPEAKER_02]: quite a bit of neck pain. Effie and the head's forward so we're on our phones we're on our

[00:33:17] [SPEAKER_02]: computers you're taking care of your children the tendency is for that head to go forward

[00:33:23] [SPEAKER_02]: which creates even more pressure on the jaw so to notice that and bring your head back

[00:33:30] [SPEAKER_02]: more often if you're able to to do some self massage and I can send you a little link with that

[00:33:39] [SPEAKER_02]: or and better even go have a massage to have them work on your mouth to get that to break up the

[00:33:46] [SPEAKER_02]: pattern of contraction because that's what is happening physically and emotionally how can you

[00:33:52] [SPEAKER_02]: shift how you've been expressing or not expressing in a in a healthier way and a

[00:33:59] [SPEAKER_01]: more supportive way. Yeah it makes me think of and I might have mentioned it on the show before but

[00:34:03] [SPEAKER_01]: my old boss when I was working in a salon taught me this trick that I still literally do every

[00:34:09] [SPEAKER_01]: single day and now it's just normal muscle memory for me but I had a timer on and you can just

[00:34:14] [SPEAKER_01]: turn it on your watch and it'll vibrate but you turn on a 10 minute timer for the hours

[00:34:18] [SPEAKER_01]: that you're awake and every 10 minutes you it'll buzz and you check in and you lift up

[00:34:23] [SPEAKER_01]: your shoulders to your ears you push them all the way back and you drop them and really

[00:34:28] [SPEAKER_01]: checking in with your posture and just how you're hunching and where you're stressing but like

[00:34:32] [SPEAKER_01]: it really creates a muscle memory after time and then it's also just so good to get out of

[00:34:38] [SPEAKER_01]: the chaos every 10 minutes yes it might sound alike a lot but it's not because you'll notice

[00:34:43] [SPEAKER_01]: like holy cow how have I not noticed how my body is positioned right now every 10 minutes

[00:34:50] [SPEAKER_01]: and it makes a huge difference that's a great idea yeah it makes a huge muscle memory that's

[00:34:55] [SPEAKER_02]: one of the best things you can do is to actually be aware that you have muscles

[00:35:01] [SPEAKER_02]: that your muscles are making the bottle that your muscles are changing the diaper that your

[00:35:05] [SPEAKER_02]: muscles are lifting and those muscles support the joints right and to be make sure that you

[00:35:14] [SPEAKER_02]: are paying attention as well to keeping those muscles strong and flexible and you pulling

[00:35:20] [SPEAKER_02]: up your shoulders putting your shoulders back creates flexibility in the muscle and the

[00:35:25] [SPEAKER_02]: structure itself which really does help because if it stays in one position over a long period

[00:35:31] [SPEAKER_01]: of time that creates pain okay I know I ve heard off a lot but we are talking about the jaw

[00:35:38] [SPEAKER_01]: and and the emotions that come up that create some of this trauma in your body so can you lay

[00:35:44] [SPEAKER_01]: out some of the effective strategies or coping skills or a nice clean idealist of what people

[00:35:53] [SPEAKER_01]: can take home if they're feeling these sorts of symptoms going on in their life and I know they

[00:35:58] [SPEAKER_01]: might even have other things pinging and they're thinking about it but this probably still will

[00:36:03] [SPEAKER_01]: pertain to you in in many ways so can you can you give us sort of like a clean list of ways they

[00:36:09] [SPEAKER_02]: can maybe start to notice and nurture this sure so one of the easiest things that we have

[00:36:18] [SPEAKER_02]: access to is nature it can be your backyard it could be a plant and what I'd like you to begin to do

[00:36:26] [SPEAKER_02]: is at least once a day notice nature and when I say notice I'd like you to begin to notice the color

[00:36:37] [SPEAKER_02]: of it the sounds of nature so taking out your earbuds and plugging from being plugged in

[00:36:44] [SPEAKER_02]: to something what does it sound like outside what does a plant look like what does the tree look like

[00:36:52] [SPEAKER_02]: what does the wind feel like what does the rain sound or feel like we're wanting to get into the

[00:36:59] [SPEAKER_02]: visceral sense of feeling versus survival and being in the mind and thinking as we slow down

[00:37:08] [SPEAKER_02]: because the cadence of nature is slow and our cadence is human beings I think especially in the

[00:37:14] [SPEAKER_02]: west is fast it's moving it's pushing and so I want you to undo that once a day keep it really

[00:37:24] [SPEAKER_02]: really simple you don't have to drive anywhere you can look out your window you could open your

[00:37:29] [SPEAKER_02]: window and feel the air feel the sun feel the cold the idea is to feel and as you do it what I'd like

[00:37:39] [SPEAKER_02]: you to practice as well is to feel your feet on the earth and let your toes relax let your feet

[00:37:46] [SPEAKER_02]: relax and really know that that mother earth is supporting you it's holding each of us and every

[00:37:52] [SPEAKER_02]: day as we walk on the earth and slow down in that and I know that sounds very simplistic when there's

[00:38:01] [SPEAKER_02]: a lot of stress sometimes that's very difficult to do very great practice number two would be

[00:38:07] [SPEAKER_02]: connection who are your people that you can call dm send them a message write them a message who

[00:38:16] [SPEAKER_02]: are those people for you because it creates a sense of safety and understanding and when

[00:38:22] [SPEAKER_02]: our systems feel safe it can relax getting some rest when we are not getting rest we become

[00:38:30] [SPEAKER_02]: over time emotionally chaotic and sometimes feeling unstable so if you could get some rest even

[00:38:38] [SPEAKER_02]: if it's half an hour if it's sleeping through the night having maybe once a week every situation

[00:38:45] [SPEAKER_02]: is different to ask someone to help you so you can sleep through the night that may be an option

[00:38:52] [SPEAKER_02]: for some not for others and or could you take a nap could you sit and unplug from media and allow

[00:39:00] [SPEAKER_02]: your system to not be in anything that's another one any type of meditation yoga breath those are

[00:39:10] [SPEAKER_02]: all geared to the mind body connection sometimes they're really hard to do when the nervous system is

[00:39:17] [SPEAKER_02]: so activated people will say to me that gives me more anxiety to do breathwork that gives me more

[00:39:24] [SPEAKER_02]: anxiety to do that because let me fill in the blank because then I feel what's in inside of me

[00:39:31] [SPEAKER_02]: the feeling is the key to allowing some of that energy to move out of you an exercise can be a run

[00:39:39] [SPEAKER_02]: it can be playing outside it can be lifting weights to keep your body strong yoga anything

[00:39:46] [SPEAKER_02]: that gets you into your body will help you come out of your mind and the looping that can happen

[00:39:53] [SPEAKER_02]: feeling there's no choice and I'm going to have to do this the rest of my life and all the

[00:39:56] [SPEAKER_02]: things that can continue to loop and create more anxiety and more depression we want to

[00:40:04] [SPEAKER_02]: think of it like a dance in and out of what can I do today what do I have time for that's just

[00:40:11] [SPEAKER_02]: for me that self-care is essential and it doesn't have to be a lot of time it can be little

[00:40:18] [SPEAKER_02]: pieces of time that we give to ourselves to let our our systems know that we matter

[00:40:26] [SPEAKER_02]: so to our children and you're the caretaker most importantly you matter because you're the one

[00:40:32] [SPEAKER_02]: doing the caretaking another one is movement and dance interrupting the loop in the brain again

[00:40:39] [SPEAKER_02]: turn on some music whatever you music you like and dance to it with some of my clients

[00:40:45] [SPEAKER_02]: I'll have them depending on what we're paying attention to that we want to move if there's a

[00:40:51] [SPEAKER_02]: lot of anger sometimes having heavy metal or rap really loud and singing and moving with that

[00:41:00] [SPEAKER_02]: actually shifts that energy in the body or you can do any type of dance ecstatic dance

[00:41:07] [SPEAKER_02]: there's a lot of courses that our community dance now for moving emotions and that's

[00:41:14] [SPEAKER_02]: fantastic because there again we're moving and feeling versus staying in the mind and feeling

[00:41:21] [SPEAKER_02]: like there's no way out breathing techniques there's many many online there's resources

[00:41:28] [SPEAKER_02]: all over online about breath work and all you have to do is google it or put it in instagram

[00:41:34] [SPEAKER_02]: you'll see many free options for breathing which connects to the body which will relax

[00:41:40] [SPEAKER_02]: the nervous system hence relaxing the muscle tissue and the last one one of my favorite practices is

[00:41:48] [SPEAKER_02]: gratitude there's quite a bit of research being done at the it's called the heart math institute of

[00:41:54] [SPEAKER_02]: the heart brain coherence and feeling gratitude in your heart and the best way I can explain this

[00:42:02] [SPEAKER_02]: is to put your hand on your heart and connect to the emotion and the feeling of love compassion

[00:42:12] [SPEAKER_02]: gratitude whatever that is for you what does it feel like to love what does it feel like to be loved

[00:42:19] [SPEAKER_02]: what does it feel like to have compassion and connect with that and then bring one thing to

[00:42:27] [SPEAKER_02]: your mind and allow yourself to connect to that one thing of gratitude and connect with your breath

[00:42:33] [SPEAKER_02]: in that feel your feet feel your body sitting down or walking as you feel the gratitude and

[00:42:42] [SPEAKER_02]: the research that they're showing is that helps the body settle back into a regulated state

[00:42:50] [SPEAKER_02]: and the gratitude practice can be done once a day just like you said Effie you set your timer

[00:42:57] [SPEAKER_02]: you could set a timer on your phone once a day to connect to your own heart your own self-care

[00:43:04] [SPEAKER_02]: and love and gratitude for your amazingness at being a caretaker taking care of these people

[00:43:12] [SPEAKER_02]: that need you that's something in itself to be grateful for is your courage your determination

[00:43:18] [SPEAKER_02]: your love your ability to do extremely difficult things gratitude pick one and begin to practice it

[00:43:28] [SPEAKER_01]: well those are so good Christy oh my gosh thank you and I'm gonna follow up with just a couple

[00:43:34] [SPEAKER_01]: plugs from a few of the things you mentioned when you were speaking about breathing and

[00:43:39] [SPEAKER_01]: putting your feet in the grass it's so invigorating by the way and dance and soul there's

[00:43:44] [SPEAKER_01]: two accounts of two special moms uh shenade quinn who's in australia she does a lot of the

[00:43:50] [SPEAKER_01]: breath work and dance work movement and her instagram is shenade quinn official i'll link it in my

[00:43:57] [SPEAKER_01]: instagram or in my notes and then also our friend annie who's from here in washington has the

[00:44:02] [SPEAKER_01]: rare breathing room so those are both really great accounts from moms who get it who sort of

[00:44:06] [SPEAKER_01]: teach and cultivate these types of communities and then also along with the dancing thing

[00:44:11] [SPEAKER_01]: yeah you can definitely get down to some pink and all that but i find a lot of therapy in uh turning

[00:44:16] [SPEAKER_01]: up m&m super loud i feel like his lyrics really relate to our day-to-day and if there was a soundtrack

[00:44:22] [SPEAKER_01]: for rare disease i think m&m could have written it but i love all those things and they're so easy

[00:44:27] [SPEAKER_01]: i mean okay easy might be the wrong word but i they are not going to cost you any money is what

[00:44:32] [SPEAKER_01]: i mean and aside from the sleep you're not gonna have to get another person involved

[00:44:37] [SPEAKER_01]: to help you attain that and those are very approachable and practical things that don't

[00:44:44] [SPEAKER_01]: take a lot of time and you get a lot of bang for your buck from them especially when they become

[00:44:49] [SPEAKER_02]: habitual yeah most importantly is to notice notice your patterns of when you start to shut down

[00:44:57] [SPEAKER_02]: when you start to feel sick or clench what are your patterns in your body that you can pay

[00:45:04] [SPEAKER_02]: attention to and interrupt the pattern by doing one of the things that we mentioned because the more

[00:45:10] [SPEAKER_02]: that you can interrupt it the more that you're going to feel like you have some control over what's

[00:45:15] [SPEAKER_02]: happening a whole new meaning of girl interrupted right okay thanks sis i appreciate you so much

[00:45:22] [SPEAKER_01]: and you're such a wise wise walker and i know that so many caregivers were on the edge of

[00:45:29] [SPEAKER_01]: their seat listening to this because they saw every single word of it in their life i know

[00:45:33] [SPEAKER_01]: that to be true so i hope any of you at least came home with an opening to think about this

[00:45:41] [SPEAKER_01]: at least and if you want to message me or my sister christie and talk about somatic therapy

[00:45:47] [SPEAKER_01]: please do so we'll have all the stuff in the notes so and we'll see you again so thanks christie

[00:45:52] [SPEAKER_01]: i appreciate you my pleasure thank you i hope you've been enjoying this podcast if you like

[00:45:59] [SPEAKER_01]: what you hear please share this show with your people and please make sure to rate and

[00:46:04] [SPEAKER_01]: review it on itunes or wherever you get your podcasts you can also head over to instagram

[00:46:09] [SPEAKER_01]: facebook and twitter to connect with me and stay updated on the show if you're interested in

[00:46:15] [SPEAKER_01]: sharing your story or if you have anything you would like to contribute please submit it to

[00:46:19] [SPEAKER_01]: my website at effyparks.com thank you so much for listening to the show and for supporting me

[00:46:25] [SPEAKER_01]: along the way i appreciate y'all so much i don't know what kind of day you're having

[00:46:29] [SPEAKER_01]: but if you need a little pick me up for it's got you