Grieving your old life

Transcript

Zoe: 0:00

Chronic. Illness changes people. Before getting a diagnosis. life is always different than it is after getting a diagnosis. Or after symptoms start. There's things that are the same. There's some things. That don't change, but a big part of life changes. I'm Robyn I'm Zoe. And we. Our mom and daughter and Zoe has pots.

Robyn: 0:29

Today we' talking about grieving your old self. After diagnosis or onset. the symptoms, life changes.

Zoe: 0:38

Before you start having symptoms with any type of chronic. Illness or major health problem. You are able to do a lot more than you would. After, or then you are after a chronic illness.

Robyn: 0:57

And that's what. Today's focus is going to be about, we're going to talk with Zoe about how. How. Her life changed and sometimes it's not. Exactly that it's not like a life switch goes off when. You get a diagnosis, you a light switch,

Zoe: 1:13

a light. What did I say? A

Robyn: 1:14

lifeline. it's not like a, like a light switch. But your life changes because it's slowly changing and you're in. This like. It's almost like a. Purgatory. Story of not knowing what's going on, you know, that something's happening. You're having pain, you're having symptoms and you're dealing with it. But you don't fuse and you don't. Y, you don't know how long it's going to be, or if it's going to be a forever thing. So. So I think that It's hard. But sometimes it's almost easier once you get the. The diagnosis because then, you know You know, What you're dealing. With or, you know At least you have an idea. You can start to plan your life. So now you have a. Diagnosis. And now, you know, what's happening to you. And you know why it's happening to you. And then you can start to work toward. Towards. Coping. Or changing. So. So that you can either prevent or get rid of your symptoms or at least manage. Your symptoms. So where do you want to start with that? Zoe?

Zoe: 2:18

Honestly, it's. It's. It's kind of a complicated thing to think about. If you're not somebody with a chronic illness. Illness. Because. When we think about it. If you say substituted with a broken arm. Your life doesn't really change much before and after you break an arm like. Yes. After you break your arm, you have to be in a cast for a while. Heal a little bit, but then you get better and things go back to normal. And a lot of the times people. Think of chronic illnesses. In that same way. Like you might not feel good now, but go home rest. Test. You'll feel better tomorrow and that's not necessarily always true. It's something that you're constantly having to live with. You constantly have to. Be aware. I have a chronic illness. I cannot do. Everything. There's some things that I'm probably not. Going to be able to do maybe ever, maybe for a while. Maybe not till tomorrow. Bro. And it's not always going to be that way. You're not always. Not going to be able to do that thing. You. You can work your way back into a lot of things and find ways. To balance out what you want to be able to do with what you are able to do.

Robyn: 3:30

Well, and I think there's power in knowing. Well, Well, there's just power knowledge. What's happening to you first of all, but there's also power. And knowing. Okay. I have, now that I have this condition with you, it's pots. What. Should I be doing like, what's gonna make me. What's okay to do. Versus. What's not. Okay. Yeah. And then what should I be doing to get myself better? And what. What should I not be doing? Cause it's gonna make me worse. And then there's. That like middle ground where like, I really, really, really want to do this. What is going to happen if I do it. Like, am I gonna you know, knowing, I think sometimes. It's important to know, like there are some conditions that you posse. Possibly could. Do certain things and. Make your condition worse. Yeah. There's also some things that are just. Going to have symptoms that get worse and it might be for a short time. And then there's the things that you can do. Two. Heal your disease that, or. Or your condition to where it sort of goes away. But not all of, not every chronic illness has. All of those rental options and options. So with pots. With you. What do you. You, how do you. Do you look at it like. Dang, I'm never gonna do. Whatever my life. Is always going to be different or in some ways, like there's certain. Certain

Zoe: 4:59

things. That I have that outlook on there's some things. That I'm never going to be able to do at the level that I could before. And like dance is one example of that. I know that I am. I'm never going to be able to dance the way that I could before. And you know what I used to. Be able to do, like I was doing backbends flips, splits. All sorts of different flexibility things that I don't think I'm. I'm ever going to be able to do again, just because of all the different postural changes that are involved. Involved with that. I would end up on the floor.

Robyn: 5:31

Is there ever going to be. Way that you could, like, I've heard some people say that there's. As a way to. How do you know the right. That word is, but to like get better. And is there, is there. Where do you think there could be something that you like there's. Was a time where it could be better or is it just going to be a thing that you've just kind of learned how to live? Your life and you have to just kind of like manage.

Zoe: 5:53

I think there might. Be a time where it's better. Like, I know that there's a lot of like clinical. Trials and stuff going on with pots and that kind of thing right now, just because. It is becoming such a bigger deal because of COVID. But I still like. Because my pots is not from COVID and it's not from. From an illness and it's not from what most of these trials are. For. Yeah. I don't know that there's ever going to be something. Something that comes out. That's like a cure for pots or like, Extreme. Extremely helpful to the point where I'm going to be able to go back and do everything that I could before. For. Like there is a lot that I still am able to do. And the bigger picture. But there's also a lot that I can. I can't do, or that's not easy. Like most of it is not easy. For me. but because I want to do it, I choose. To go and to dance and to end up in pain. Or having a really hard time while I'm there, like My. My Saturday classes that I teach, that's three hours that I'm teaching. And I haven't even danced the whole time. I actually danced very little. I. Warm them up. And then I instruct them across the floor. Most of. The time. I don't really have to do anything for that. And then I have started. Teaching them their dances, which obviously I have to do stuff for that part, but not. To an extreme level. There's still kids. They're not. Super. The advanced. But even after those three hours of teaching, I. I am exhausted. Like every Saturday after teaching I'm. I'm just ready to go home. I don't really want to do anything else, which most of the time, because. I am the way that I am. I give myself something else to do on a Saturday afternoon. Afternoon, because I'm like, I can't waste the rest to the day. Sunday's my day off. Or. Or whatever. So.

Robyn: 7:43

So you when. When you go to dance or whatever it is like, if you. You really had something that you really wanted to do? You have had. Pot's. I mean, not that you've had it for a super long time, but you've had it long enough to where, you know, If I do this, this could happen. Like, have you ever. I might be my add is getting the best of me. Have you ever. Gone and been like, okay, I really want to do this. I don't care what the repercussions is I'm just going to go and be like, I'm going to sh I can do. A triple pair of what I'm going to go do it. Have you done something like that? And then. You're like, oh, I really wish I didn't do that.

Zoe: 8:18

Yeah. There's a couple of times like, I'll be teaching and I'll be like showing them turns and doing. Doing turns with them, like one time, probably like my first or second week. Teaching. I was doing chaine with them across the floor. And. And that was not smart. Like I should not have done that because I got two. Like probably halfway across the floor. And I was just like, whoa. And they were all like, are you okay? What just happened? And I was like, it's just my condition. I can't. Really exactly. Do turns and I decided. I did that. It was a great idea. And obviously it was not I have to invest. As an adult. I don't think

Robyn: 8:55

I've been. Able to do turns across the floor. Maybe. Ever as an adult. So you might not be that. Off of. Okay, hold on. So I'm just. I wanted you to know that, like, that might be a welcome to the adult world. Although, you know, Yes, you are a little bit younger than I was when I. I realized that I couldn't really do Shanae turns across the floor as an adult. However, However. I digress. So when you. You like, as you've been doing things with pots, I know that there have been some things that you and I have had planned that we've had to. Like, just keep on in mind that we'll make this. Plan, but we might have to reschedule or. We may not go and there are a couple of. Things that we didn't go to, but So I know that there's a lot of things that you've. Been able to just kind of either push through or make plans. Like we had the concert. And we did and whatever. So what kind of like. Maybe I'm jumping ahead of just the idea of talking. About grieving your old self, but. Instead of going to your personal let's. Let's just talk about what it's like, like, so you get a diagnosis, right? And you're like, Okay. I have pots, which I feel like we've talked about this before in your day. In the last episode. It was like, it's kind of a relief when you get a diagnosis. Cause now it's like, I have a name for what I've been going through. Yeah. I'm not just the crazy. The girl with anxiety. Yeah. So you get, once you get through. That. Okay. I have a name for this, which is kind of a relief. What's. What's the next emotion, like how, what happens next? Like what's the. The phase between that, and then where we're talking about today.

Zoe: 10:56

Well, it's a lot like. In the beginning, it's a lot of anger. Because if you're in a similar situation to what I was, I was dealing with. Symptoms for years and I had never had a diagnosis. So. Once I finally got that. It was like a relief as well as a lot of anger, because why. Why didn't it. Somebody find this before I have every single symptom I have been. Able to find about pots and no one has. What to figure that out yet? Yeah. Like what took so long? Why didn't this happen earlier? But then there's a lot of like a lot of. Research that I did. So I started to understand what's going on and. And then you kind of get to look at it from a different point of view. And you start to figure out what things are going to help, what things might help. What you can try. How you can change your life and change. Your. Maybe. Routine or. Your lifestyle to accommodate your symptoms and your condition better. And then it starts to get easier. It's not. Walk in the park, right? Any means it's still going to be. The challenge pretty much every day to manage your symptoms and push. Push through and have energy and everything else. But. The more you do it, the easier it gets and the more you deal with your symptoms. Comes the. Easier. They seem to be. Right.

Robyn: 12:17

Well, and I feel like that you kind of, because it took such a long time for you to. To have a diagnosis. I feel like that you kind of had already made some. Some of the adjustments that you were gonna probably have to make anyways, just. Just organically because you needed to for your. Our own safety. And your own. Comfort level. And just the fact that you couldn't. Continue to do the things that you were doing. Yeah. But you. You get to that spot where it's like, okay, now I like, did you have a moment where. You will like. Oh, my gosh, I'm never going to. Whatever again, and feel like you lost. Last part of yourself.

Zoe: 12:55

Not. I really like. The biggest thing for me is dance. And like, You know, for basically my whole life dance was like, Everything. But it's not like I can go. Go. Dance the same way I could anyways, like there's no. Competitions or not that I know of, at least no competition. for adults or like, Classes or company. Companies or anything like that, like I would have to create something of. Of that nature. Yeah. They're just making it happen.

Robyn: 13:27

They're not here anymore. Right? Yeah, you could go to LA or New York or whatever, right.

Zoe: 13:33

But one, I can't dance to the level that. I would need to, to be in that place. And I don't. I want to, it really wasn't your, your. I was never really in it to do. Do something with it. It was adult doing it because I wanted to. And that's all I would want to do anyways. Yeah.

Robyn: 13:52

Well, and I think sometimes. People get these diagnosis is diagnoses. Diagnosis, something like that. And they. They do have that moment where it's like, oh my gosh, my life is going to change. And partly. And this is my life coach in me. That's starting to come out and about what I'm about to. Is that. Who you are or what you do. Doesn't have to define you, but we use those things as. A definition, like. So you've always been. Been Zoe. Sometimes people are, you know, Zoe the dancer. Or Zoe the whatever, and like, as a mom, Mom. I'm like I'm Robyn, but I'm a wife and a mom and a teacher. Teacher. Regardless of what you do. But sometimes people do have those, like. Moments where they have to like, have to identify. With something. Did you go through a process? Did you feel yourself? Going through a process of like redefining who you were. We're or do you feel. Again, that may happen. Yeah.

Zoe: 14:55

Like you said, I haven't had my diagnosis for awhile and. I'm still getting a lot of the testing done to figure out really everything. Everything that's wrong and what all we can do and different, like specific. and everything else like that. So I honestly feel like I'm. I'm still trying to figure out who I am like who's Zoe. The Potsy is instead of whose Zoe is right. So. And that's not saying that I don't know who I am. Like I. I still am myself. There's nothing that has completely. Changed with me. I just have this diagnosis and the symptoms. That I now have to carry along to.

Robyn: 15:32

Well, and as. A person like you still are. I don't want to, I don't want you to get mad at me and do the oh, ma'am thing. With me, but you still are pretty young. Yeah, so. So there's a lot of changes that happen in your life during. During the time that you were going through pots, like. Yeah. If we look at like the concur. Concussions that you had the pre concussion and after concussion, and then there was. COVID and then, so then there's pre COVID and after COVID. And at the. The same time. It was pre high school during high school. After high school. And then whatever. So you you've been going through a lot. A lot of stages of change. Yeah. And in our lives, when we go. Through those changes, especially one of the biggest is leaving high school. And whatever the next step is going to college, becoming an adult, getting. A job. That's a big change that everybody goes through and it's so. So big that like I'm 45. I have two adult children. I've been through the. Like I've gone through all the stages. I left high school. I got married. I became a wife. I became pregnant and then I became. Mom, and then I was a mom of small children and a small of like middle-aged children. And then I was a mom of teenagers. And then now I'm on a mom and have a note, an adult. And I went through multiple career changes. So all of those stages. Is there, are there some levels of grief in those stages? And it's even. Normal person's life. And then you add a chronic illness into. When you get diagnosed, right. When you're going through some of the. The biggest changes of your. It's like, that's a. A lot to deal with.

Zoe: 17:10

And in a lot of people's situations, especially. With pots. This is when diagnosis happens is right when you are. Getting out of high school or you're in high school or you're a young adult or. You're just trying to figure things out or you're in college. Like it is really hard. To process all of that and be like, okay, not only do I have. To continue figuring out who I am in this world. Continue on. With whatever it is that I'm doing right now. I also have to manage all. All of these different doctor's appointments, I'm going to have this diagnosis. my symptoms, all the medications that I might have to. Take everything is just getting to be too much and it's going to be very over. Overwhelming, which is one of the hardest parts of getting a diagnosis is it's. So. So overwhelming, because a lot of the times that does mean extra doctor's appointments. And extra medications and everything else. But you're already dealing with more. So that's just a lot. To process and to deal with, and then. Once your. Sure. Accepting of your illness and your understanding. Of the fact that you have to do more. You're already in. The position to continue living with it. Like you're not shocked by it. At anymore, you're already handling everything. You're managing. Your symptoms, you're going to your appointments. But your. You've lost a lot of your life because you've been. Dealing with symptoms and then you were shocked by it and you were just going through. The motions. And it's hard to. Get back into. To things and get excited to start doing things again, when you first. So long, we're just stuck, either breathing or being. Disappointed or angry or sad. And. And you didn't get out there and do anything. You didn't continue on. And find new hobbies that you can do to accommodate your symptoms.

Robyn: 19:05

But that's not to say that it's too late to do that.

Zoe: 19:08

Right. Yeah. And like, I was there too. I was at the point where I was just. Like I had nothing to do. I didn't have any energy. I was accepting of my pots, but I was just. Completely empty. There was nothing that I could do. There's nothing that I had to do. Do. And I didn't know what to do. So I was just kind. Kind of stuck there trying to figure it out and I'm still trying to figure it out. Cause it's hard. Hard to find things that accommodate your symptoms when they are so sporadic. Erratic and unpredictable.

Robyn: 19:38

Well, and I think sometimes just being an adult. It's hard to find things. That don't come naturally to you or not necessarily. Naturally like when you're a child or even a teenager or. Even a young adult in college. There's things that. Organically come into your life. You go to college, you meet new study groups. Groups, you start to study. Somebody says, Hey, let's go check out this club or whatever. And you start to build new hobbies and new things, or you meet somebody that introduce. Introduces you to a new sport And that that stuff seems. Seems to happen naturally. You are. At your stage where you're like, I have. I can't just go do what I've always done because that doesn't work anymore. For me. And so it's like when you look at too, like we've talked. You talked in your notes about grieving your old self and you do have to kind of go through. And let yourself go through that process. Yeah. And our notes, what we should've. I've done is wrote down the stages of grief. I'm going to try to remember how to recite them. At stages of grief. I just don't remember. I, I do teach this. And. I think one of my classes. So, but I usually have notes with it, but. The first stage of grief is denial. Yeah. Which you just, and that's everybody. Regardless of what it is, you're grieving. And sometimes you can grieve. You can be grieving. I mean, if you were a 20 year old who doesn't have pots, You can probably. Be grieving your high school, So you're in denial that you're no longer going to school anymore. Or you're no longer. Going to see those friends that you saw from the time you. We were in kindergarten every single day or. You're in denial because you finally got a diagnosis and you don't actually think that it's. Real and you are. No way I have this there. No way. And you're denying. Saying it because every other test has a negative and normal and you're like, there's. There's no way I don't have this. You're waiting for that one. Normal. Through answer. Especially when it's diagnosis like pots, where it's not like this is. A positive test and it says it's just, it's kind of that differential diagnosis. So after denial is anger, which you already talked about, how you got to. Anger and a lot of, and some people, they say The stages of grief are sequential and I call. Kind of don't believe that. I think that the stages of grief. They are progressive and you progress through those stages of grief. I think. I think some people go through them in different orders. And I think some people take a. A lot longer to get in certain stages. Some of them, it might just be like, you just. Get through it. And you'll your right to acceptance. But so you're like denial and then anger. Anger. And then I'm sure there, I think there's something else, but then eventually. You get to acceptance. Where you accept what your, whatever it. It is whether you finally, now you accept that. Okay. I'm not in high school anymore. And. I'm going to be an adult and I'm gonna get married or I'm gonna buy a house or I'm going to have. A job or And so you accept your life for. Where. It's at, and then you start to, then that's, that's when you can start to get to the. Thriving and the living that. Fullness of life, but sometimes. Times, I feel like that there are certain things in our life. That we either. Either never fully accept or we're constantly reliving. Going back. And sometimes that's like people who lose their parents or sometimes. They have a severe deep loss when they're super young. Young or when it's just something that you had your heart set on it and it doesn't happen. And sometimes you have those moments when you're standing or watching a dance, maybe. Maybe it's a hallmark commercial. The summertime. And you're like, oh, like I do this all the time where I see things. I'm like, oh, I was always going to do that. With my kids and I never did. Because we got too busy, cause we were always. At a dance competition or a baseball tournament or whatever. And so. So I think that we go through those moments and sometimes that comes back, like I lost. Lost my dad when I was really on, I was 20 when my. Dad passed away. And some days there's just things that hit. Me and I'm like, or I'll smell something or I'll. All touch somebody's hands. That's really, really rough the way my dad's hands were. And it kind of brings me back and. Sometimes I get teary-eyed and sometimes I get emotional and I have a lot. Of emotions that come up during hallmark commercials. And it's not to say that I haven't. I accepted that my dad's gone, but it's just that you always kind of revisit. Visit those moments. And we can always sort of go back. Before our diagnosis and go and sort of revisit those moments. But we can also bring us back to this moment of acceptance where it's like, okay, this. This is what I'm dealing with and I'm going to now learn what it. I can do to move forward. maybe. You will never be able to dance again, which obviously you've done some things to replace. That be doing the teaching. And being a coach in any sport I hire. I highly highly suggest for people who are former athletes, people who. You can't do it any longer because you can kind of. You're on a different side. Side of it. And it's, you have so much wisdom because you've been there before. But it helps you to kind of have that bridge, that gap. But if you haven't truly come to that acceptance spot, And you're still. In a spot of anger or denial, you might not be. Be able to truly. Enjoy that next. Next step, whatever it is. So it's really important to work through that. And sometimes that might. I mean, you need counseling or you might need some sort of therapy to get. You to the spot where you can really, truly embrace and accept where you're at right now. Yeah. But I think that that's really as really hard there's and you'll. Like you wrote triggers there's, you know, do you have things that trigger you that. That you get to the spot where you're like, Do you get. Are you still sometimes. Times or denial. Do you go back and forth in any of those stages?

Zoe: 25:00

Get angry. Because of doctors. I get angry because of doctors who don't. Care. Because if you are. Taking an oath. To be a doctor. And you are going through all of that school. And you're doing everything it is that you have to do to be a doctor just. Just to have a license to practice medicine. It's. It's your job. To do your job. It's. Is your job to look for a diagnosis. It's your job to listen to the patient. It's your. Our job. To understand what they're going through and. Be considerate of what they're going through and actually put an effort into doing. Your job instead of just checking the boxes of what you have to. Do and sending somebody home. Right. It's actually. Looking for what could be wrong and listening to everything that's going on. And there's so many doctors out there that don't do that and they don't. I don't understand. They don't put an effort into it when they really need to. You also want them to understand where you're coming from? Like when you don't know what you're dealing with. And you haven't. I have a diagnosis. Their job. To treat each patient. As an individual and not carry. Carry over emotions or feelings or. Like anger or abruptness from somebody. Somebody else. The other patient, I think that's where my sort of What's the right word. People, pleaser personality. Comes into. You just give everybody the benefit of the doubt. And they honestly don't deserve it. I do. I kind of do everybody. Nobody gets a, usually most people in my life get an out and I'm like, don't be so. Ruud, blah, blah, blah, blah. And then I tell stories about like my husband and I. I have a different, we, he got really, really angry at somebody about. A soda. The other day and the drive-thru. And we were. I was telling the story. To my other friends. And they were talking about it. And then they were telling me stories about the soda. And so. So now, so, okay. Now, now that we have the diagnosis. We've grieved. We've gone through the stages now we're at acceptance. Yeah. What are, do you have strategies for people of things? That you do to help like move on and live in that moment. Are you still working on that your own life? Just. Not thinking about the past, which is kind of like common sense, NoDa. Don't touch the big red button. Easier said than done. Exactly. It's easier said than done. But finding new interests can. Help finding things that you can do to accommodate your symptoms. Do you. Have suggestions to go in there since you are the Potsie. Have you. Coloring. These things, things like coloring or. Painting. But things like coloring. Painting artwork, reading, writing things. You can do in a seated or a stationary position, something. Something that's not super active, going for walks has really helped me. Me. Another thing though, is to enjoy the little things. And celebrate your little victories. Like if you have a followup with. Doctor and they don't find anything else. That's wrong. And there's. There's no other new tests that you have to do. That's a little victory. So even if you got out of bed and you made it to the doctor's appointment, Appointment. That's a victory, even if you made it through the whole day without needing. To take the extra pain medicine. That's a victory. The littlest things. You can improve your mood. And I've noticed that because I started doing. Doing it. By staying positive because if you stay. Positive then you're going to think positive and things are going to be positive.

Robyn: 28:35

Do you do anything like actively in that, like practicing. And gratitude or anything like that, or do you just really, I just, you're just a mindset. Chooser. Yeah, I'm just conscious of it.

Zoe: 28:46

I just. If I get into a situation where I'm starting to think negative about something, or I'm starting to be. Be over irritable or anything like that, then I will focus on the positive things. Things about the situation. Like if I am. And a lot of pain at work. I will focus on the fact that that means I get to sit down and I don't have to move. But it was as much, or I don't have to move around as much if I. I have a headache. Then I focus on the fact that. I can think slower and I don't have to overwork myself. Self and think too much about things. So you take that moment. And you're like, okay, well, And this moment, I'm just, what's the good that's. Coming out of this. Yeah. Yeah. I'm thankful that I don't have to. Right. Whatever. Yeah. Right. I'm thankful that I can. What's the eye of the storm. And the situation. Yeah. That's good. So But yeah. Wrap things up. Grieving. Your old self is hard and it's something that you kind of always have to deal with when you have. Chronic illness, but there are ways that it gets better. And there are things you can do to kind of help it. And. It's not the end of the world. If you are still you, even with. With your diagnosis, even with all of your symptoms. You just have to. To find this different version of you that accommodates those symptoms and that diagnose. Gnosis and even if you have to take the pain medicine at the end of the day, you can. I still find something. To be proud of you proud of. In that moment. I don't. Well with pain. But as a person I do. I know you did. Well, But Sometimes you can just like give yourself a little bit of grace. Yeah. You know, you don't have to have a victory every day. And like, just getting through the day. Sometimes is that victory? Exactly letting yourself. Enjoy the fact that laying down in a dark room and not moving feels good. Let yourself enjoy that feeling of feeling good. Yeah. So, and then, okay. And that's okay. Good job. Yep. Good job getting through. Here. Stuff and keeping going, like I was so proud of you when I. When you started teaching, just cause I'm like, well, she's can have that little piece of her back. Yeah. Not the same way as it used to be. Right. Yeah, it's still. Something that you can still. Own and do, and yeah. Inspire others too. It's nice. All right. All right. Thanks for coming in. If you guys. Liked our. Our podcasts, please click the light box. Like. Button, download and share. We appreciate it. And we will see you back here. In a week or so. Bye have a good day. Bye. Bye.