Adapting To Motherhood with Chronic Illness

Ali: Hi everybody, I have a different type of episode lined up for today. And it's actually a little bit of an audible situation. If you follow me on social, I made a quick reference to this. One of the things that I've learned in the short amount of time that I've been doing this is something that should have been obvious to me from the get go. 16 of living with rheumatoid arthritis and I should have... expected this and I didn't even think about it. So here it goes. I have been lining up interviews of different moms and professionals, mostly moms at this point, but, I did have several lined up and this is not a one person situation here. This has happened a couple times in the one month that I've been doing this. So I don't want, if you're listening and you're one of these people, please know that I am. more than happy that you took time ⁓ do what's right for you. audience like, what are you talking about here? I had several people have to cancel on me ⁓ for medical They're just not feeling well. ⁓ And that Actually, the emails or the messages that I get, they feel terrible. hope that I haven't messed up your plans. don't want, ⁓ you have something scheduled and I to this and I want to do it, and these are all the types of things that I'm getting, but ⁓ I don't have the bandwidth to handle right now. Nothing is more to me. And the last thing I would ever want is for somebody to come on this show and not feel like they able to convey message they wanted to convey because they weren't feeling well. So to me it's like, take the time. ⁓ If it's a year from now and ⁓ wanna come back, I am gonna be But I actually have so much respect for who can do that. Because it's not an easy thing. as mothers living with these diseases, as we're expected to do everything, whether you have a disease or not, right? You're expected to show up. And as you grow and have more maturity, ⁓ you realize your word almost everything. So you stick by, ⁓ you try to do you say you're gonna do. ⁓ And you do that your children, and you that for your husbands and your spouses and your... friends and you know, that means anything to you. But there are times when we just cannot do that and... That's a tricky situation. know, this ⁓ not the life that we thought we'd be living. ⁓ it's tricky to manage the expectations we put on ourselves ⁓ and the expectations that society puts on us and the expectations that our family and friends put on us. Showing up looks very different. ⁓ post-autoimmune than it does pre-autoimmune. I used to do a lot more. mean, I've always had autoimmune. When my kids were younger, I really was in a bad, worse spot than I am right now. But did try to show up. My mother went to every single thing at the school. Every single thing. She volunteered, she taught at CCD, ⁓ my coached us in sports and refereed and they were very, and I'm one of six. My yoga passed ⁓ away when was an infant. So ⁓ one of five they had to juggle all this through and we were all, ⁓ like eight or nine years apart. So there was a lot of us doing a lot of different things in a lot of different ways and they always showed up. So that's the framework that I was coming from. I tried that when my kids were little. And wasn't because I felt like I had to, but I wanted to be a good mom and I wanted... to be involved in every single day lives. And I wanted to know who I was sending them to every day. So I wanted to be in that building. ⁓ I wanted to check it all out. But there was distinct moment. I used to volunteer in my daughter's kindergarten class when we lived in Massachusetts. And that was... That was hard. The things that presented it to be hard for me were the chairs were so little and so the table were so small and there's a lot of sitting on the floor and at that time my knees were so bad and my hands, my wrists were so bad. If I got down on the floor, which I'd usually have to use a wall to slide down, and I'm talking, I'm now like, I'm 47 now and this is like, my daughter's in the eighth grade so you do the math. I was in my 30s. I was sliding down the wall to get up and to get down, which wasn't the hard part. The hard part was getting back up. I just could not put any pressure on my wrists and my knees were killing me. it started to become this mental warfare of, ⁓ how I can't squat, I can't sit down in those chairs, they're too low, I can't get on the floor. And it was all these negative thoughts were going through my head. And then when we moved to, ⁓ South Carolina, volunteering in the kids' school is a lot different. You weren't working with the children as much, you were doing little errands for the teachers. So it would be, can you go to the lamination room, which is on the other side, like the east wing of this huge building. There's a... eight first grade classrooms in this and it was kindergarten through third grade. So there was like seven or eight different classrooms for each of these grades. There's a million kids and you have to walk all the way from here to there and the parking lot's a mile away and it's, feet were killing me, my knees were killing me. ⁓ now I'm doing all of this walking and... You know, that's not how I did. I was limping and I would be holding onto the wall a little bit. Like my meds were just not working. My dietary restrictions were not working. I was very stressed out. I was miserable. this is not how I expected to show up for my kids. ⁓ didn't want. I didn't, you know, I think thing that a lot of us can relate to, especially if we are in physical pain, ⁓ the looks that we get from people when they can see our pain, and which is probably ⁓ drives us home and to stay ⁓ from people. So I was starting to get looks. ⁓ you okay? And it comes from a beautiful place. They're generally worried and they want to help you. just for me, ⁓ that look ⁓ someone else's face was like, this is not how I want to show up for my kids. This isn't, this is not it. So I to just decide that I wasn't going to be the mother that worked the cafeteria or did the photocopying or I'm not necessarily going to know my teachers, my kids teachers as the way thought I would. I'm not going to be that involved. I literally can't do it. and that's okay. I'm not a bad mother because I'm doing it a little bit different than how I thought I did it or how my mother did it or how my neighbor does it or how that woman down the street who has a different autoimmune disease does it. None of it matters. I show up the way that I can in the moment that I'm in. Do what you can in the season you're in. follow someone who says that all the time. I just like, I want to plaster it. I want a t-shirt that says that. So learning how to show up, but learning what showing up means, different pre and post. ⁓ was just one example I gave. There's a million others. Like ⁓ used to tell my husband all the time, he'd say, let's go out to dinner on Friday, let's have a date night. And I'd say, yes. And then Friday would come and I say, I can't do it. And he would get disappointed and be miserable and be unhappy. Not, not at but just. ⁓ I worked, he worked hard all week and he wants to do something different and he wants to go out and I just, I cannot get it together on a Friday night to go out. It's, it's, we have a soccer game tonight and I'm gonna take it easy this afternoon it's been a busy week getting back and doing traveling and working and everything so when I get back from the soccer game at 9.30 and then have to go pick up my other daughter at 10 o'clock, he'll more likely do it but. it's gonna be a longer night for us on a Friday, which I don't like to do. So all that to say is what I have learned is I don't say yes to these things. He still asks from time to time, not as much as he used to, but, I think we're in a good position now where ⁓ like, why don't we, you lay low on Friday and then on Saturday, depending on what the kids are doing, maybe we sneak out. ⁓ and do an appetizer somewhere and a cocktail at four o'clock in the afternoon and then we're all home in bed by 8 30 and we can get to church in the morning. Like that's kind of, or just a better off person for an afternoon date. And luckily he has a job where sometimes he can sneak out on a Friday afternoon and can make that work too. So it's again, it's showing up in the way that we can without overtaxing ourselves and learning that. mean this has taken me a very long time. And in the process of learning that there's a lot of grief that goes along because you do feel guilty that ⁓ is it normal that I don't want to go have dinner with my husband on a Friday night? I have guilt about that and then he's upset and then we have guilt and you know just working through all of that things and I did have guilt about initially about not being the photocopy mom or working the... Karyokantina or whatever it is at the school that I can't do. I was a big basketball player and ⁓ people are always saying, why don't you coach your kids? They don't even play basketball anymore. But back then, and it's like, well because I can't even catch a basketball. Like my hands hurt so bad. I can't run down the court. My knees are not good or whatever it is. And having to that can get to be a lot. So there's a grieving period. And there is a time where I did just push through everything and just made things worse. So ⁓ just have to be okay with living the life that body is allowing me to live today. And that can change tomorrow. It can get better, it can get worse. And I'm not to sit around and be fearful of what tomorrow can bring because that robs us of the pleasures of today and the joys of today and tomorrow isn't promised to anybody so what's the point of fearing it? I gonna be in a wheelchair in six months? Well. Who knows what six months can bring and stressing yourself out for the next six months overall, that is pretty ridiculous in my opinion. Of course, it's something that we all do and I'm not perfect at it and I do have some fears that creep in from time to time, but I just try to live through today, for today, for my family, show up for them and worry about what my body decides to do tomorrow, said than done, I know. So reality of not showing up, what does that look like? Canceling your plans, missing certain milestones or events. When decided to move here to Charleston, I had to make a huge sacrifice and a huge decision to miss most of the milestones that my family goes through now. ⁓ I've My siblings all live in Massachusetts. All the grandkids live there. So we miss every, you know, I mentioned before we're Irish Catholics. ⁓ first communions and sporting my niece is in plays. ⁓ I've cousins ⁓ kids are doing all kinds of cool things. I miss my throws amazing Day brunches and Thanksgiving ⁓ parties and... All these things that, you know, that is a sacrifice that we have made that we cannot show up for these things we live a thousand miles away. Why do we live a thousand miles away? Because the winter was killing me up there and the winter is way long. It's never ending. And it in October and it ends, ⁓ if you're in May, probably June, before it's like nice weather. that's probably why I didn't feel great when we moved here because there was a lot of stress behind ⁓ what we were giving up and ⁓ a of disappointment and a lot just general negativity that surrounded all of that. I had to get past it because the long run, ⁓ living is easier on my body and it's easier on my family and ⁓ it's a really good change for us, thankfully. And ⁓ had let a lot of people down when we made that decision and it wasn't easy and it was draining and blah blah blah blah blah. But we're all in a better place now for it. what kids are learning is you to what's best for you, but there are consequences every decision you make kind rebound outside of the that you're making. ⁓ even, so say for... going out to dinner with friends ⁓ say yes ⁓ then I have to cancel. But friends don't care, they get it. They are they understand ⁓ I have never been a person who questioned my job as a mother. I knew I was going be a mother before I was a mother. I know I've made mistakes, I'm not saying that, but I know I'm a good mother. And it's probably the thing most confident about in my life, ⁓ is being a mother. So how I show up, is it different than what I thought? Absolutely. life is so different that, of course it's different and I just have to be ⁓ with it. I'm them different than I thought I would be raising them, but there's a lot of pros to the way that I'm raising them as opposed to the way that I thought I would raise them. My eyes been opened. to things that didn't exist. I was very much go, go, go, go, go, go, go, go, like a crazy person, working, all the things. It just a ⁓ no pain, gain type of thing. I can't do that and I have to take the time to listen to my body and my kids are learning that now, ⁓ which isn't something I learned. I just learned. ⁓ push through, push through, push through. But that's not necessarily the best way. There are times when we need to push through, but that's not necessarily the best, healthiest, productive way to live life. so, sometimes voice in my head tells me I'm being lazy, and there probably are times when I am being lazy, but that little voice that creeps in that's... ⁓ you're being lazy, you're being lazy, and then I have to look back on my lived experiences and say, well, I just really can't do that. can't call myself lazy because ⁓ body is ⁓ at me in a million different ways. So the talk that's in your head is part of the journey ⁓ to get a healthier place ⁓ mentally. ⁓ believe these autoimmune diseases are mind, body, and soul. The mind part is the trickiest part. teaching your brain. how think differently. That's not easy. The older you get, the harder it is, in my opinion. I think the number one thing that I have learned is how to communicate these things to other people. it's not about, woe is me, or feel bad for me, or look at me, or whatever. I'm just kind of honest with people and just tell them flat out, especially my husband. I to say yes, but I just don't know. ⁓ I been feeling great. I'm not really sure ⁓ where where I will be on X date. wanna say yes, but I don't want you to head count me in just in case. I'll say a lot of times if someone invites me to their house, I really wanna try to make it. Don't count on us for food. We'll eat before we come so that if ⁓ it's issue, then if it's a barbecue or ⁓ something that, if it's a sit down dinner, that's a little different, but who does that anymore? I don't know anyone. So I just say don't count on us for food. If we make it. we'll eat before we come or we'll bring something and of course I always bring something. So it's just managing expectations on the other side. And sometimes I'll say I might sneak in but I'm just not feeling well so I might only be there for half an hour and I'm just gonna tell people that I've got another appointment or something. You don't wanna broadcast it to the whole party that you don't feel good so tell the hostess or the host. And then a little bending of the truth here and there. There's nothing wrong with that. Yeah, so I think you're a ⁓ and you're newly diagnosed or you're not young mother and you're newly diagnosed and you're ⁓ a and you're newly diagnosed and you're trying to navigate this new life, I think you just need to redefine what it means to be ⁓ a mother because the mother you were before is not going to be the mother you are going forward. ⁓ And that mean you're a bad mother. It just means you have to do it a little differently. and we can all learn, and your kids can learn, how to pivot and to understand their body and all that ⁓ by example. ⁓ And think that there's something beautiful in that and ⁓ you Kids are little sponges and they pick up on things and it's better to be honest with them and open with them and just tell them than it is to try to hide it and bury it and keep going and burning yourself out and then I don't know about you but when I did that I just end up screaming at everybody like a psychopath miserable and Throw myself in the shower and crying for an hour. Like that's not good. It's actually a lot healthier and better to just sit everybody down and say, I am not feeling well. need a break. I need somebody to help me with X, Y, and Z. ⁓ everybody's gonna be happier and it's all gonna be better. ⁓ The problem I have is they try to help with X, and Z and they don't do it the right way. then have to redo it myself. See, I'm not perfect. I'm still figuring it all out, another I... I will touch on briefly is that I do think that having, said mind, body and soul, your spirit, having a relationship with God and being thankful for what he has given you ⁓ him to help you. to pivot this and turn it into not something that isn't as negative and what are we learning here how are we growing and how are we getting closer to him and how is this all ⁓ because it all is ⁓ body and soul, it's all connected and know, pray for healing and if you get it, you get it and if you don't, you keep praying because there's a reason for all of this. ⁓ And there's a reason, think that a real struggle for me at one point. was like, why? The why me? ⁓ That's ⁓ I that's an honest question. The days you can't pick your baby up ⁓ or brush hair. It's not the that I ⁓ dreamt of for So there was a lot of why me's ⁓ and that. I got to the point where I had to stop asking that because found like at one point, why me? And then I turned the corner and someone's kid is suffering of cancer. Okay, I'll take this. Why and someone's husband died in a car accident? Okay, I'll take this. ⁓ Why me? And then, you know, some tragic thing happens in the news and okay, rheumatoid arthritis isn't that bad. So there's always somebody worse off out there. So the why me thing is like, it's an easy trap to fall into, but. You start looking around, there's a lot of people that are lot worse off than you and I. And that's the truth. It's not a truth you want to hear when you're in a flare, but you're stuck in that why me trap, and I've been there, it's and lonely place to be. So I encourage you to reach out to other moms who are suffering. Reach out to me. ⁓ You send me a DM. My email is theautomuvmompodcast.gmail.com if that's how you want to reach out. you are in a dark and lonely place, ⁓ not alone. We've all been there. And you've got to take the first step ⁓ and out and talk to somebody. And that's how you show up today. And if that's all you do, then you have just made one huge step to getting into being a better mother for yourself, for your children, for your family, everybody. ⁓ some days, those are your steps. You reach out and ask for help. Because this can be a dark and ⁓ space, as I've said. And that's all you accomplish, you're still a good mom. ⁓ You the first step. to get happier and to be a better mom if that's what you accomplished today. Your story can change somebody else's life. So that's part of ⁓ mission here is I am in a better place physically, ⁓ mentally, spiritually, all that. And I feel it's time for me to share that and connect other people with people who need that. Because there was a very lonely place for me when my kids were little. I've talked about that on here before that, you know, we, I had to. kids that were one and two and there was a hundred inches of snow on the ground and you didn't leave your house because if you did your kids would get lost in the snow and know driving was hazardous and blah blah blah blah blah so I don't know where I was going. ⁓ I didn't have any connection. No one I knew was suffering the way that I was suffering. My family was wonderful and great and they would help me out and they took the kids when I had doctor's appointments and did all that kind of stuff. it's not that I was not heard or seen by my family, my siblings, my aunts, my uncles, my cousins. That's not the case at all. But it's still isolating because they just don't know what they don't know and you're grateful they don't know it because it isn't good. None of it is good. So take the step to reach out. If you need some resources and you want to talk to somebody but you don't want to be on my podcast, I'm your person for that. Maybe I can connect you with somebody that I've spoken to who's in a very similar situation that you have. ⁓ do find that most women want to help other women ⁓ this motherhood thing. But ⁓ lack of connection that we have, especially to people ⁓ are living with illness, ⁓ it difficult. We don't lead with I have rheumatoid arthritis. I went into work the other day and I've been posting this on my social media and one of the guys that works in the office was like, I had no idea. And I said, yeah, well, that's not anything. He's like, what, you don't wear a t-shirt about it? No, it's not really anything I talk about, especially now because I don't, you know, I'm walking fine and my inflammation is super low right now, which is good. So it's an invisible disease, as we've said. So all that to say, Today, my message is show up the way you can. And if that is literally making your kids a lunch and getting them off on the bus and that is it, then job well done mom, you're a good mom. Because there's a lot of moms out there who have the ability to do more and don't. don't even, these kids are in miserable places doing miserable things and... You might not be the mom you thought you were gonna be, but God gave you those kids for a reason. no can be their mother like you can. So showing up ⁓ however looks for you today is plenty. It's enough and your kids love you. And tomorrow tomorrow. Don't worry about that until you get there. Alright, that's all I got for you today. I hope someone finds some value in this. If you would like to be a part of my podcast, please let me know. I'd love to interview you so I don't have to do this one-on-one thing. I don't like it. It makes me uncomfortable. And thanks so much and I'll you next week.