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Don't You DARE Gaslight Us with Rachel Hayden · Giving Pain Purpose with Lyndsay Soprano

• Lyndsay Soprano (00:01) This is Giving Pain Purpose, where we talk about the game of living in and with chronic pain and trauma. I'm your host, Lindsay Soprano. On this show, I sit with the warriors, loved ones, doctors, holistic practitioners, and those who walked through hell and want their voices heard. You don't have to heal quietly and you don't have to fight alone. This episode is dedicated to anyone that suffers from the progression of multiple sclerosis, struggling with the downward spiral of your mobility. And for the family members who also struggle to support, love, and understand how to be the best they can be for their loved ones, even when they feel helpless and sometimes feel hopeless. You know, when you wake up every morning, you have a big decision to make. All of us do, no matter what our health is like, challenges or not. And the decision is to show up, whatever that looks like to you. And one thing that I have learned over the past few years, as my pain has progressed in a direction that I am absolutely not thrilled with, is that without making the cognitive decision every morning to kick some ass and take some names, then I will begin what I like to call the spiral of dread. Is this it? Is this my life? How can I possibly go on living like this and watching my loved ones suffer alongside with me? And for those of us that live in chronic pain and deal with chronic illness, whether it is stemmed from trauma, injury, or both, showing up gets harder and harder. And we get it here at Giving Pain Purpose, like full stop. Especially when half of our lives are sitting in doctor's appointments. Researching, doom scrolling, we're in bed, we're on the couch, we're in the backyard, we have all these different offices that we've created for ourselves, making these impossible calculations for every little decision and step that we make. And slowly it steals these bits and pieces of us. And it's beyond exhausting, guys. And if you haven't been diagnosed yet, or you don't trust the diagnosis, you more than often deal with medical gaslighting. And I have certainly gone through it multiple times, and my guest most certainly has. And we have had it. So we are here to advocate and hold you up today, and quite frankly, every day. So without further ado, I would like to introduce you to my beautiful guest, Rachel Hayden. Hello, my sweet love. How are you doing today? Rachel Hayden (02:44) Hello. I'm doing great. Happy to be here. Lyndsay Soprano (02:47) I'm so glad that we are here together today. So Rachel has suffered with type 1 diabetes for over 25 years and has had MS for a little over 10 years. She struggles with severe muscle issues that are still undiagnosed, that affect her breathing, her GI tract, and her mobility. All of that tied up with a bow coupled with severe depression that actually has led her to leave the workforce. She also has a podcast though called The Spoonful Show, which is an amazing show filled with hope that has helped her realize the amount of strength others have when living with these invisible illnesses. So I'd like to start with you telling us a little bit about how your pain journey began before the diagnosis. And then let's take it from there. Rachel Hayden (03:37) Well, before the I was diagnosed with type one diabetes at age nineteen, which is a little bit old to be a type one diabetic and young to be a type two diabetic. And so I was having the typical symptoms. I was going to the bathroom a lot. I was thirsty all the time. I was exhausted. And led me to my doctor's office. And and what I appreciate about type one diabetes is it's a quick test, it's a yes or no, you know, it's it's it so it came up. Yep, you've got diabetes and and dealt with that for very in my late teens, early twenties, and was able to get through all of that. And and then as far as pain's concern, that that really started more with my MS diagnosis. And it was late 2009. I had woken up and and I was getting dressed. I'm like, my my feet feel a little tingly and numb. That's that's really weird. And I kind of just kept going and about ten minutes later I'm like, okay, well now my ankles feel really, really weird. And within like Lyndsay Soprano (04:42) Later. Rachel Hayden (04:43) with within like a half hour, I was like, okay, I'm having like my shins are are feeling beard. And and so I went to my doctor's office and they quickly sent me to the ER. And they were like they they actually thought that it might be something called Guillain Buret, which if you've heard of that Lyndsay Soprano (05:02) I sim similarly said the same thing when I went in. I'm like, my God, that would be horrific. Rachel Hayden (05:09) Yeah. But it it stopped at a right about my knees. And you know, I really had a hard time walking for like the next month and then everything kind of went back to normal. And then a year later it happened again. And and so then we start seeing looking back now, I start to see that that MS flares and and things like that. And I was diagnosed after gosh, that was two thousand nine and I wasn't diagnosed till two thousand fifteen. with MS. Yeah. Lyndsay Soprano (05:40) is a long time. So during that process of getting diagnosed, can you talk about what that was like for you? And I know that we've talked about the medical gaslighting part of all of it because I know that there are a lot of people that are listening right now that are tired of not being heard and saying that it is in your head. You're making it up. I mean, the the things that I have heard are just heartbreaking. Rachel Hayden (06:04) me too. I mean, I've I I thought six years was was way too long. And I I've interviewed people with, you know, fourteen years, seventeen years. And it's it's just absolutely crazy. But yeah, I I started seeing a neurologist after after that initial episode that l put me in the hospital. And, you know, at first they were just like, you probably just had a reaction to the medicine because you had a cold two weeks prior and And you know, it happened again the next year. And so then I was a little bit more curious as to why is this happening again for me. And I mean, it went on for years and years and years. And at the beginning, they kept saying, Well, it's probably just your diabetes, even though it was well controlled and within the limits of what normal should be. And so it just took years and years. I will have to admit, and I could talk about this a little bit later, but I was not a good advocate for myself. So I just kept going back every six months, every year, and having more symptoms. And and they would say, No, you know, I don't think it's MS. And then it got to a point where the doctor was like, this might be MS. but I'm not sure. And so we're just gonna wait. And for me, it felt like there it there was one point where I was like, Okay, this doesn't make sense. Are they waiting for me to get worse? Lyndsay Soprano (07:25) The friend. Rachel Hayden (07:26) To diagnose me because like what are you waiting on if if the you know, MS you have to piece a lot of things together. There's not one test that says, yes, you have it or no, you don't, but struggling for years and it was probably a good year and a half of me hearing, Yeah, this might be what we're looking at, but we're just not ready. The the medicines are really hard on you and we're just not ready to pull the trigger and and after a while it was just it got so overwhelming of just hearing that, going into every appointment thinking, I'm, you know, am I gonna get the diagnosis? And it it took another, you know, like I said, year, year and a half of of blaming it on other things and and making me feel like it was almost like losing trust in my body of, you know, am I really is is this fatigue just because I'm working 60 hours a week? Or is is, you know, am I faking this? You know, am I maybe thinking this is worse than it is and all of that going on and and finally got the diagnosis after, you know, so many years. Lyndsay Soprano (08:36) That's unbelievable. The part about like the self-doubt that gets like implanted in you. Like we have no reason to be making these things up. And what infuriates me about what you just said is well, it's like the hurry up and wait. Like we think this might be it, but let's just wait until you get a little bit worse. Why the hell are we waiting for me to get worse? For for MS, if we can s educate a little bit about it, because I know a lot of people are like, well, you just have to get a spinal tap or you have to get an MRI, and that will tell you whether you have MS or not. What were the what was the testing that actually ended up proving, if you will, that you had MS? Rachel Hayden (09:19) The funny thing was is that I went through a lot of the testing in those six years. So there wasn't one test that came up. It was more of, and again, I wasn't a good advocate for myself, but over that summer I I just said, you know, it's getting worse. And can you just retest me on some of these things? But some of the, you know, I I had multiple MRIs. I probably had five or six MRIs, you know, before the diagnosis. And they did see lesions on my brain. Lyndsay Soprano (09:49) From the very beginning. Rachel Hayden (09:52) maybe a few years in, I would say, a couple years in from that initial hospital visit, they're like, Yeah, we see something on the brain, we don't know if it's MS. And and it, you know, at that time it was maybe three or four lesions on my brain. Now I have my doctor counts the the big ones and he stopped at twenty five. So it's you know, it's definitely has has grown. But You know, yeah, I did the spinal tap, I did neuropsych testing to look for, you know, things that could could rule out MS, whether it be attention deficit disorder or, you know, so 'cause I c kept saying I'm losing my memory, I'm not remembering things and and so it wasn't one test that finally proved that it was MS. I think they were just like, Okay, well I guess it is, you know. And like and and I guess we're ready to start treatment. And that's how they presented it. There was no defining like this is what it is. They were just like, Okay, here's some pamphlets, pick out what medicine you want. And looking back, I wish I had been a better advocate for that. It it's, you know, a regret, definitely. Lyndsay Soprano (11:09) Well, and and I I don't want you to regret it because it's not your fault. It is not because I I I understand that feeling though, where you're hindsight's always 2020, right? So you're I've looked back at I would have never done X, Y, and Z had I educated myself a little bit more on X, Y, and Z, because I would have never gone through with some of the medications that they gave me. With some of the treatments that they were trying to do and nerve blocking and all these other things that cause a whole shit ton of other things that I absolutely did not need to add into the backpack that we carry of all the crap that we're lugging around. Right. Like, let's just keep adding things into these into these ladies' backpack so they can never go hiking again. Yeah. Rachel Hayden (11:57) Exactly. Lyndsay Soprano (11:57) Cause it's filled with too many heavy rocks. And that part of it for me. Is please don't regret because you were doing the best that you could with the information that you had at the time of your life and with what you were experiencing. Because right now I would look back and say, I'm a no regrets kind of a gal, and I have done some crazy ass things, people. Because they they sh in fact my best friend and I were talking about this last night because they shaped the woman that I am today. Right. And they brought me to a place where I'm having a conversation with you right now. Trying to help other people. So for me, I'm not gonna look at that as a regret. Now, when it comes to continuously going in and having doctors not advocate for you, they those are the people that should be having regrets. Because I feel like they left, they leave so many of us behind. Is it because they're busy doing insurance and paperwork and they don't have enough time to spend with us? Do they just not care? I I they're not. taught some of the things that they're supposed to be taught to as doctors. What do they have a nutrition class for like 30 minutes in med school, you know? Rachel Hayden (13:04) Yeah. Yeah. Lyndsay Soprano (13:05) And so not all doctors are the same. And we have to keep fighting for the right one because if the if the doc they're our they're our client. We're the customer here. And we need to be in absolutely advocating for ourselves and interviewing them. And if you don't feel good about them right out of the gates, you just get the hell out of there and you find somebody new. But that took learning a lot in order to do so. And that's what I hope with our show here today, along with your show on Spoonful, that we can say, hey, we've already gone through all of these things. Listen to these things so that you don't make the same mistake. Rachel Hayden (13:42) Yeah. Yeah. It's a different world. I think when when I was younger, you go to the doctor, whatever they said is, you know, you went with. And nowadays they're, you know, doctors are overloaded with patients. You get 15 minutes with a doctor every three to six months and and they they only see you for that short amount of time. They don't see you in bed and and not being able to get up and all of these things. And so it's gotten a lot more tricky and it's it we have to be a little bit more organized and we have to be a little bit more vocal about what our day-to-day life is actually like. Lyndsay Soprano (14:20) Absolutely. Yeah. But we're done feeling dismissed because that is such a huge part of getting diagnosed and also managing the diagnosis because we're not unfortunately a lot of us are not getting any better. And so we our our needs are changing. Have you found that with yourself like from the beginning to where you are now? Like you're progressing in a di it not in the the direction that you would like to be going. And we need these people by our side. How are you handling that right now as you're progressing? Rachel Hayden (14:51) It's hard because sometimes it feels like when you have a progressive illness, it feels like you're trying to stop a moving train. And it's just so out of control. I I saw a therapist for many years and he said, You're type A, you like to control things and this is something you cannot control and you can't do much to stop this. And I don't know where I'm gonna be in a year from now. I don't know where I'm gonna be, you know, two years from now. And so there's just a lot of heaviness with that. But it's so different from the beginning because I had my diabetes and I had my MS and I dealt with them individually and everything was good. Since I've been diagnosed with MS, over the last ten years, my health has just gone downhill. You mentioned the weakness, you know, for I'm going on eight years without a diagnosis on I'm have weakness around the muscles and my lungs. So I have a lot of breathing issues. My lungs look great. There's nothing wrong with my lungs, but the muscles that support the lungs are severely weakened. I've got weakness from swallowing all the way through the digestive tract. obviously weakness in my arms and my legs, which is causing more mobility issues. And nobody can put the pieces together because my my neurologist is saying, well, it's not MS. There's something else going on. And so then I start at the beginning with my family doctor and getting to another neurologist that might specialize in muscle disease. And I'm going through all of these different tests. And so now I feel like it's more frustrating because I have so many different doctors, but they all are staying within their wheelhouse of what they know. And I can't seem to find somebody who's looking at the whole picture. And, you know, my My pulmonologist will say, Well, the weak muscles, that's from your MS. And and and the neurologist is saying, no, that's that's not from the MS. And the gastroenterologist is saying, well, this might have something to do with your diabetes. And my endocrinologist is saying, No, your numbers are great, you know? And so it's just it's a much different puzzle that I'm working through right now. And everything's overlapping and everything's getting worse. And I'm not figuring out, you know, where it's coming from. And and, you know, we talk about gaslighting, you know, a lot of times with test results. I had some blood work done by a neurologist who said they were in like metabolic because they ran some some blood work. I had some metabolic testing that was like way high. And she dismissed it. And she said, it's just because you didn't fast. But it's it it'll it's fine. And I had to ask, can I take this again if I do it fasting? Okay, well, I'll send it in. So I did it fasting. The numbers came back higher. And so again, she just said, it's the food that you eat. Not asking, you know, what kind of foods do you eat in a day? What are, you know, this or that. And I was so frustrated because I'm like, I don't understand this. And the more I researched it, it made sense, metabolic issues. Your body is worse when you haven't eaten. And so I'm looking at, okay, this makes sense. It could be a metabolic issue. And so I said, Can you send me to a metabolic expert? I'm the metabolic expert. And I'm like Of course she is. And I'm like, reading her bio, it's there's nothing on there that says that she is. But so I started back at my at my regular physician. And he was like, Okay, I'm gonna talk to her, but he put me on so many vitamins. And I had a follow up appoint with her and I s I said, my doctor, my, you know, regular family physician put me on all these vitamins. And she's like, That's great. You know, we'll test it in another three months because that'll fix it. It's, you know, it'll fix it. And I waited the three months and I took it again and and some are better, but there's some some that are still high. And I went back and said, Okay, what does this mean? And she said, It's fine. You just eat too many oils. And I'm thinking, What you know What is that? What does that mean? Lyndsay Soprano (19:12) What does mean? Yeah. Rachel Hayden (19:14) And she I it took me three tries, I think, to to get the question of how can it be normal if it's still high after all these vitamins? And she basically said, Listen, I'm at the end of the road. I can send you to the mayo clinic or whatever. But, you know, she was basically done. Lyndsay Soprano (19:34) Yeah, their go-tos are Cleveland, Mayo, Hopkins. And it's like, okay. And yes, they are, they are the top notch places for us to go here in the States. But now I have to move to an the other side of the country in order to do this and uproot my entire life because you're kind of just a little bit lazy. And and I find it to be like my God, I'm so frustrated for you right now and everybody like us. Like I just want to just scream. Yeah. Cause I'm like, I want to come over to your house right now and go with you to a doctor's appointment and like flip somebody's lights out because it's like I just and and I also want to say, you know what? Fire her. You know? Like w I have fired more doctors than I have have kept. And at this point right now, I went through this, I went through this, not this. similar kind of situations with yours where I'm going to the neurologist and we're doing a thing, you're doing all the nerve testing. your nerves are doing wonderful. And then I go to the next nerve testing and they're like, my God, your nerves are totally fried in your right foot and your left foot. And I'm like, this is within a couple days of each other and you're doing the same test. Okay. I don't understand how this is possible. And so w it it it's just this constant like, I feel like I'm on a merry-go round, just going round and round and round and round and I'm dizzy and I'm gonna throw up. Rachel Hayden (20:57) Yeah. It is. Lyndsay Soprano (20:59) It's and it's exhausting. You see kids at the end of the day when they've had sugar all day and they've been playing all day and they collapse. That is us every day when we're on this Merry Girl. This is very good, this is a very good example, Lindsay, that it just popped out. Yeah. But it's like, cause that's how it feels, you know? You're just by the end of the day, like last night, almost to the minute by 7:30 p.m., my legs, Thumb and Louise, as you know them and my listeners know Thumb and Louise, they were like. We're a kaput. It's at seven thirty. And now we're going into our cramping phase where they do whatever the hell they want to. And now I can't walk. And I've got, you know, I've used infrared stuff on my legs and I've got every kind of cream and rub and spritz and spray. It's just like the smell like I live in an old farts home, you know? I'm like, what's your cologne today? I'm like Rachel Hayden (21:51) Been gay? Yes. Yes. Lyndsay Soprano (21:54) And that doesn't even work because there's stuff that has capsation in it. I can't use it because I already feel like I'm on fire. So I can't put anything with capsation in it. And so it's just like if everything feels like trial and error. And then I still don't have an answer at the end of it of what's gonna make me feel better. have you time I forgot to ask you this, so I'm asking you now. Have you gone the route of CBD and THC at all in regards to help? Because that is the Only thing that I rely on outside of one muscle relaxer that basically I can just like swallow a whole bottle of it and it still won't do anything for me. Rachel Hayden (22:30) Yeah. You know, I did a while ago, and I'm talking years ago, probably when I was first diagnosed with MS, it is something on my brain just because of, you know, I have a lot of muscle pain, a lot of really stiffness. And and yeah, the muscle relaxers, you know, don't don't do anything for me. So Lyndsay Soprano (22:54) They barely touch it. Rachel Hayden (22:55) yeah. It's something on my brain. I think if I had all the money in the world. I I there's so many things that I want to do. I I would like to try acupuncture. I would like to try massage. I would like to try, you know, some things. And it gets so expensive when you look at insurance not paying for it. So that is something that's I I think I'm at the point now where especially for a lot of people that have gone through gaslighting of it's mentally exhausting to keep looking for something. Mm-hmm. that you feel is there and you have test results showing something is off here. So I'm I'm kinda in this limbo of just like, I just need a break from continuing down this road and how frustrating it is. Lyndsay Soprano (23:44) The CBD and the THC side of the thing, for me, the THC part fixes my headspace so that I feel a little bit happier about what's going on in my world. It doesn't make me obnoxious or I'm already obnoxious. So God knows you don't need me to be any more obnoxious. you've only known me for a short span of time, my dear. No, but and and I pride myself on it actually as part of my personality, but it it. What it really does is it just kind of makes me feel a little bit happier in my day. And so there's this lift of attitude where I'm not so butthurt about how bad I feel. And then that mentally makes me not feel as bad from a pain perspective. Is it actually taking me out of pain? Not out of it, but it certainly soothes it. And so but that has also been trial and error. Cause you read There's so many different stranges. And I'm in Southern California. I'm in Los Angeles. You can like throw a a gummy bear at a dispensary from everywhere you go. So they're all over the place. And I'm very fortunate for that here in Southern California. But it is, it is like, I know what this gummy does. I know what that gummy does. I know that if I smoke it, it does this. I don't do the vaping thing. Like I started that. I didn't like how it made me feel. So there's trial and error and there. Just like it's like, have you tried gabapentin? Yes. Every single one of us have tried Gapapen. Rachel Hayden (25:10) Absolutely. Lyndsay Soprano (25:11) Stop asking us this question. It's the go to and it makes everybody crazy and wants to kill themselves and drown themselves in bathtub and we all get fat. Rachel Hayden (25:21) What a great combination. Lyndsay Soprano (25:22) Yeah, isn't that great? Because we already feel depressed and have anxiety. Why don't we give us a couple more things to feel depressed and anxious about? So I encourage to at least look into it because it certainly has helped me and I it certainly has helped many other people. And it's actually in our genetics for endocannabinoids. And so I learned a little bit more about the endocannabinoid system and how that works within our body. And it's certainly I have a girlfriend that has MS and she solely relies on On C B D and THC and TCA, and there's all these different kinds of it. But again, you have to kind of play around with it just like you do the pharmaceuticals, but this is plant-based, you know? And that part of it I love. and then we we we're gonna be talking about psychedelics throughout this entire season. actually, so you're gonna have to listen because there's one episode that's coming out that you're gonna absolutely like go, my gosh, this is amazing. so you know, the exhaustion of all of it. is is real and true and that the feeling of not being believed and that we're not being honest is I think even harder than dealing with the pain in of itself sometimes, you know. Rachel Hayden (26:30) Yeah. Yeah. Definitely. Especially when you can see you know, I I had a muscle biopsy and there was something that showed up on that. I had genetic testing, something showed up on that, you know, blood work. It's it's difficult to to take everything's okay, especially when you're feeling worse. And you know, and and things are getting harder and you know, especially when somebody has to deal with mobility. You know, and and not being able to do the things that they used to do, not being able to do things that you enjoy. And and that's what gets really, really difficult is feeling like, why can't we figure this out so that at least I know what it is? And maybe there's a diet, maybe there's something that can help me feel better. And and that's a really difficult part. and I I feel like even with the MS. after so many years and and so many times of them saying it's we you know, we feel like it's MS, getting that diagnosis. I know a lot of people talk about getting the diagnosis as being, you know, I'm happy. I finally have a name to this. And people think, well, how can you be happy? And and I was I was like that as well. I was like, okay, we know what it is. And I hadn't prepared myself for what it actually meant and what my life was going to look like because I knew in my gut the the it felt like, okay, this is probably MS and all the frustrations I went through to finally getting that diagnosis and then sitting back and going, Wow, like I I don't know if I really prepared for what my life's gonna look like. Lyndsay Soprano (28:14) Yeah, because we're we're we're grieving, you know, for the loss of what we once had with our bodies. Like I can't ski. I was like total downhill skier. Like I just was like top to the bottom. Let's go as fast as we possibly can. Like, you know, all of that and dancing and hiking and biking and doing all the things and like yoga. I can't I can't do yoga on my feet. I have to do it, you know, modified stuff with that. And then I swim. That's my movement because that's. All that I can do. I can't walk my dogs down to the mailbox anymore. I can't do it. If they pull hard, if a dog comes after us, I'm face first down in the sidewalk and now I've got a whole other health issue on my hand. You know? And but it is I feel like with each day that passes where we're not getting better and these little pieces are just being taken from us, we're grieving the little girl inside of us or the little boy inside of us that used to run and play and ride their bikes and do all the things that we used to and used to Be able to focus longer, be able to not have these brain farts. I know we're getting older and we get more forgetful. And I understand that. Now add pain brain on top of it, guys. That is a whole different kind of thing. And then for us women, add paramenopause and menopause on top of it. Now you've got the trifecta. And that is exactly where I am sitting right now. And I'm trying to learn to love this new body. I'm trying and I'm trying to accept this. But there are days that are harder than there are days that are easier. How how are you dealing with the the grief side of this? Rachel Hayden (29:52) I think at the beginning, when I was diagnosed with MS, I think it was maybe a year, six months to a year later, I had to stop working because I was driving everywhere across Indiana. I was working 60 hours a week. There was it was so much going on and my doctor's like, I can't have you driving all across Indiana when your feet go numb and and and things like that. And I dealt with a a pretty good depression for a good couple of years after that because I didn't realize gr I was grieving, but I was spiraling because I was good at my job. I felt like I had done a good job. I was contributing financially. I loved what I was doing and all of these things. And to go from racing at, you know, a hundred miles an hour to hitting a wall. And and I really struggled with a lot of negative self-talk of well, who am I now? Am I just a mom? And then as things kept getting worse in my MS, it was like I would have, you know, have a lot of cognitive issues of forgetting things. And and it would be, well, gosh, I can't even I can't even put in my groceries without forgetting five things, you know, and really kind of laying into myself as far as not feeling good enough, feeling like that. It wasn't fair to my husband to have to deal with this, that he didn't marry me knowing this was gonna happen. And and it I spiraled quite a bit into unhealthy things. And I after years and years of counseling, you know, I've I've learned how to speak kinder to myself. And it's been a change that I don't know where I would be had I not learned some of the things that that he had taught me. But now it's starting to get into more of the physical things that I'm losing. Yeah. it's not being able to go out on my own. It's, you know, going to my kids' baseball game. And after a half hour I'm I'm done. And I have to go in the and sit in the car and and turn the air on and and shut my eyes and losing different things that we enjoyed as a family. You know, we love to go bowling. I haven't been able to and now I'm finding we're not doing it. And You know, so I I know my you know, it's been an impact on my family, but I think grief is is always there. It's it's every time you lose something, every time that you can't do something, it's hard to to be okay with it. Lyndsay Soprano (32:30) It's incredibly challenging. It's it's you're like I like I've been mentioning, you're just slowly losing these pieces of yourself and and then trying to fill those little holes with something else and trying to fill what do we fill those with? Okay, well, meditation and you know, so like finding other things that we can feel more fulfilled and grateful for simple things. That's something that I know you and I have spoken about. Do you find that to be something that you've that's come with your illness and your and your pain that you've that you're a little bit more grateful? Rachel Hayden (33:09) Yeah, definitely. I I think that going through this and and as you know, having a a a podcast, you you hear the stories, you talk to people, you see what other people are going through and and you feel less alone. And I think it's a gift when I really look back, you know, especially the MS diagnosis was a gift to slow down and to take advantage of opportunities and You know, I I traveled so much. I I am happy that when my kids were tweens and teenagers that I got to spend more time with them. And I'm really especially that this is a progressive disease, I'm really grateful though, even though I can't do this, this and this, I can still do this. And, you know, instead of going out bowling, the kids come to me and we do, you know, game night and and things that I can do at home and being grateful for the way that my husband is toward me and how much he has fought this fight with me and just being grateful for the people that are around you. I don't have a lot of of friends and and and a you know, a huge group, a big tribe, you know, that's that's cheering me on. I'm grateful so much for the people that that get it, even though they don't get it, you know, but they They they understand what I'm going through and and unconditional love. And I feel like my kids have learned a lot of empathy, you know. They they look at people who may be in a wheelchair or are struggling to walk and and there's a a a a kindness there that I feel like they have a little bit more of empathy for the people and not judging people for what they look like or just not knowing what battle everybody's going on. The invisible illness, we talk about it all the time, you know, of of not really knowing what people are going through. And so I have a lot to be grateful for despite the diagnosis. Lyndsay Soprano (35:22) Well said. And thank you for saying all that. Cause I completely agree with that. Not that I've been an ungrateful person, not that I haven't I'm a massive empath, sometimes to my demise. But it it's it's so important for us all to like take a beat and look at what we've got in our lives. Because there's everybody's always got it worse, right? I mean, you could say that, but I have found that my heart has gotten more full. And have met so many, and you get this totally by being a podcaster too. Like I find this to be like the fucking coolest thing I've ever done in my life to do this kind of work. There's this weird part of I call this my blessing. And people are like, what are you talking about? Like this is the worst. I'm like, yeah, it is the worst. But it's turned into a blessing for me because I'm able to have conversations with people like yourself. And be and if one person hears this today and is like, I'm showing up tomorrow like I haven't been showing up, then our work here is done, you know? And that makes me feel like we're making a difference in this world. Rachel Hayden (36:28) Yeah. Lyndsay Soprano (36:29) You know, I don't want anybody to feel like they're alone. And that's what it feels like when you live in pain. We're very, very lonely in it. And I definitely feel less lonely with Rachel around. Rachel Hayden (36:42) And you as well. It it it is so nice to be able to talk to somebody who gets it, even though they may have something different. Totally pain Lyndsay Soprano (36:51) It does. Rachel Hayden (36:52) pain levels are different. It's all this wonderful umbrella of chronic illness, of people just understanding what it's like to to have to keep trekking along day after day of feeling maybe okay is is the best you'll ever be is just feeling okay, you know. I have days where it's like I don't have a moment without discomfort or pain or fatigue. And just the community of of chronic illness has just been so blessed to be a part of it. Lyndsay Soprano (37:26) Yeah, and it it it's it's like so contradictive in the same point. You're like, what? What you talking about? But it it is what it is. And there are places that are out there online that you can get yourself sucked into. The negative people that live like you and I do, don't get sucked in. Immediately jump ship and find the people like Rachel and Lindsay, because You've got the whiners and the complainers and all of the people that are just so angry with their diagnosis. They're angry with their life. They're angry with their body. They might not have the village that you and I have. My village is small like yours. I don't have a ton of friends. I don't need a ton of them. especially because I just I feel like this is a really it this is a very intimate thing that goes on when you live in pain. And I don't want to have another person feel like they have to carry it too. So though I like kind of I kind of play ping pong with that whole theory or that whole situation too. But man man, if you feel any negativity in any group that you're in, a Facebook group or any kind of Reddit and whatever it is, jump ship. Don't get sucked into it. Don't get into the trolls. Don't do it. Please go find some other places. And w Rachel and I are here on our in our social media and And our email, whatever it is, because you wanna you gotta find your right the the right tribe that's gonna lift you up and hold you instead of tear you down. Cause it's easy to get into that negative land. Cause I was there. I was there. I watched it. I witnessed myself doing it. And I was like, my God, I gotta get out of here 'cause I'm sinking really fast. It's Rachel Hayden (39:02) Yeah. Lyndsay Soprano (39:02) like a pirate just took over my ship. Rachel Hayden (39:05) Yeah. Yeah. Definitely definitely agree with that. Lyndsay Soprano (39:09) Yeah. Yeah. So before we hit the dusty trail here, I know that you there's something that you said that chronic pain has cost me the life that I once knew. And I totally identify with that. And I think everybody that's listening that does live in pain understands that. But what is the the best thing that you do for yourself in in during your day? What do you do that that you love yourself? Like what is your big hug that you give yourself every day? Rachel Hayden (39:38) Mm. It used to be. It was, you know, my daily routine was like seven o'clock, run a hot bath and get a book and and do that. That's something I can't do anymore. I I can't get in and out of the tub. But at seven about seven o'clock, usually my body's about done. Dinner, you know, do dinner and all of that stuff. And and so every night I I go into my bedroom and I have my my dog that wherever I am, you'll find him within three feet, including right now as he's passed out next to me. And he and I come in the bedroom and he lays like real close to me and we'll share a snack. And from, you know, seven to maybe nine, I just watch shows, I relax. Sometimes I will just, you know, sit and just pet him and talk to him and And it's kinda like my time, you know, throughout the day. I'm usually by myself, but you know, taking care of the dogs and getting the stuff of the podcast done and all of that. I I've maintained seven o'clock, that's all off. You know, I'm gonna just go back, I'm gonna relax, I'm gonna sit and just nourish myself with a snack and a drink. And I really have found great comfort in in My dogs. I've got two of The other one's a daddy's girl, but you know. But and just just relaxing and taking that time to say, I'm not going to focus on anything right now. I'm not gonna doing emailing, things like that. I really try and and save that space as a sacred space for me to try and unwind for the day and try and, you know, get ready for the the next day. Lyndsay Soprano (41:25) Yeah. Cause we definitely do have to prep for the next day. We have to get ourselves like, okay, Lindsay, okay, Rachel, this is what has to happen tomorrow. Rachel Hayden (41:34) Well yeah. Lyndsay Soprano (41:35) Doing something for yourself and soothing, whether it's in the morning, the middle of the afternoon, the evening, whatever your day is like, take time for yourself because that's something that I feel in our busy world and our social media and our news cycles, because they're so quick and our world is just a Complete disaster right now. We're all getting sucked into so much negativity that we need to just put a pause on it and take a beat and love ourselves, just ourselves. Because from my understanding with you, you and I both have been type A and we're people pleasers and all of the things. I always worry about everybody else. And then I'm the last one on the list. And I've had to work very hard to try to flip that narrative that I should be number one. And Rachel should be number one, and you as a listener should be number one. And then the rest can follow from there. That's my personal opinion. Rachel Hayden (42:26) Yeah, yeah. That was a hard one to learn. I'm still working on the on that. But learning to say, you know, I'm sorry I can't do this, so can you do this for me? Or I I can't go, but go, have a great time, you know. And and not pushing myself. That's that's a hard lesson. Lyndsay Soprano (42:45) It is and also not feeling guilty about it. Yeah. That's my issue. And so saying no is a hard one and asking for help is also a hard one for me too. Rachel Hayden (42:56) Yeah. Yeah. Lyndsay Soprano (42:58) All right, well before we leave, let's tell everybody how we find you. And also we always end every episode with a little bit of hope. I think this whole episode has actually been hopeful, but anything that you'd like to add before we leave? Rachel Hayden (43:11) Yeah. well, you can find me on Instagram and Facebook and TikTok. Instagram and Facebook is Spoonful of Strength. TikTok is Spoonful.of dot strength. And the Spoonful show, we're currently just did our hundredth episode. Congratulations. And been doing that for about two and a half years. And so You can find that everywhere. You can find podcasts. it's the Spoonful Show. New episodes air on Wednesdays. And yes, we will be having Lindsay on the podcast very shortly. So we'll make sure and let you know about that as well. But as far as, you know, ending words, I I think when I look back on everything that that I've gone through, I I have to go back to like the defining moment of when things changed for me. And that was when I learned how to speak kindly to myself. I think as women, like you said, we're we're so much about taking care of everybody and putting ourselves last. And what I learned is not only to speak kindly to myself, but to speak in a way that I would speak to my husband or my children and treat myself as good as I treat them. And and that's really changed my thinking and a lot of the things going forward is Why am I talking to myself like this when if my husband were in the same position, it would be a completely different conversation. And so if you find yourself doing that, I think we need to go back to being grateful and and things like that, but turning the tables and saying, Okay, you know, I'm doing the best that I can and it's okay if I can't do this, and it's okay if I didn't get everything done. I'm doing the best that I can and I'm listening to my body and I'm treating it with the same respect that I'm gonna treat my husband or my kids. And that was just has been the highlight for me of being able to kind of recognize and for my mental health it's made a huge difference. So I think just be kind to yourself. Lyndsay Soprano (45:24) Yes, cause we're worth it. Rachel Hayden (45:26) Yes. Lyndsay Soprano (45:27) Thank you, my beautiful friend. It has been so lovely not only to be on your show, but to have you on mine. I just love it so much and I'm so blessed to have you had come into my world. It's wonderful. Rachel Hayden (45:38) I'm so happy that that I was able to join you today. And I love what you're doing and I I value what you do on your show and I'm really looking forward to to seeing more of your episodes coming up. Lyndsay Soprano (45:51) Thank you so much. I appreciate it. You are exclusively invited to share this spoonful of sugar VIP pain journey together. Let's get to the heart of how to heal with you by my and Rachel's side. Please follow Giving Pain Purpose wherever you digest your podcast content. We will be there. Visit us at GivingPain Purpose.com and follow us on all the socials. Thanks for listening, my little VIPs. Catch you on the other side.