Things Unseen

I had a few gloomy weeks. Took me by surprise how strong and long this wave held me down I hunkered down and sat with it. It took weeks to have the energy to do an interview - at which time I was graced with a brilliant subject in Meaghan O'Rourke. I had been sidelined by "feelings", she had been shut down by an autoimmune disease. I was embarrassed. She had a "real illness" and managed to create work to help others! Still, whatever had a hold on me was real too. So I share it with you.

Transcript

This is Shine On, The health and happiness show with new episodes every week on how to live well. Shine On is heard all over the world as a podcast, But it's heard first on the radio in New York's Hudson Valley. Hi, It's Casey. Thank you so much for tuning in to Shine On. Well, Nearly a month without a podcast, I guess I've got some explaining to do. Hmm, Where do I begin? Well, First off, I'll say this. I'm sharing this information with you in hopes that maybe it'll help you or someone you know. And I'm recording this in the radio studio while they tear down and demolish the room next door. So if you hear yelling or banging, That's what that's all about. Still working in a great state of unrest here with so many physical changes happening in the building. So here's the deal. Most of you know me as a highly functioning, Happy person. And then I hit a wall. Not familiar with this. Can't remember the last time I hit a wall, Although I'm sure it's happened in the past. So there was a lot going on as usual. There was the Omicron variant that was causing stress. There was the aggression in Russia that has only turned into full-fledged war. I was in the midst of yoga teacher training for restorative yoga. I was dealing with a diagnosis in one of my pugs. And I had noticed that things had gotten really difficult. I had noticed that people in my life were blowing by my boundaries like I wasn't even there. Not just once or twice, But like in three separate instances in three different areas of my life. People just like, Do you hear that banging? People just like totally disregarded that I was even a human and just did whatever they wanted to do. And while that was perplexing me, I had to look at the energy I was sending out and I realized, Oh, There's not much energy coming off me these days. And I found myself in the weirdest place, Just lying on the bed day after day watching TikTok videos. I know that's funny. And as I'm scrolling through the TikTok videos, Just like mindless distraction, I find this video from this guy at K. D. Arnot. Is that his name? K. D. A-R-N-O-T-T. I'll say Arnot. And it's just this kind of dad looking guy with the white beard and glasses. And he's doing that TikTok thing. You know, TikTok puts the words up over your head and you point to it. If you're not familiar with the genre, It's quite effective. So you can read what the TikTok person is trying to say while they say nothing at all. So here's Ken. He's got a pen in his hand and he's pointing to the words over his head and the words say, Never ignore the signs of burnout. I'm like, Burnout? What's that? And then he points to the words, Loss of interest in everything and easily irritated over everything and crying for no apparent reason. Uncontrollable anxiety and panic attacks. Difficulty sleeping at night. And there's Ken again, Pointing with his pen to the words over his head. Never ignore the signs of burnout. Loss of interest in everything is the one that hit me. And I thought, I'm burnout. I'm burnout. You know, I can go back and call forensics and try to piece it all together about how I got burnout, But it really doesn't matter. I started to dive into the world of getting to know everything I can about burnout. And what I've read is psychologists say it doesn't go away by itself. You can't just wait it out. Burnout is chronic, Physical and emotional stress leads to exhaustion, Leads to detachment. I just wanted to be alone or with my chickens or with my dogs and cat or on the couch with my husband watching Miss Maisel, Which none of that is unusual. But honestly, When I tell you that's all I could handle, That is all I could handle. I was going home every day after work and just getting right back under the covers feeling nothing. I felt nothing. Can you hear that banging? Maybe that has something to do with it. And so the past three weeks has been a journey to come back, Get better, Heal. You all know, If you listen to shine on the health and happiness show at all, I take pretty good care of myself. The vitamins, The rest, The exercise, The meditation, The yoga. And still I hit a wall. Hard. So if you know me at all, If you're in my world, You're saying, Oh, But Casey, I saw you at your one year anniversary party of the thrift store and gee, You were so happy and pouring Prosecco and making plans. And that is true. I did rally for a couple of hours here and there in the last, Well, Now I guess it's four weeks, But for the most part, I felt nothing. Just just going through the motions and not caring. And I'm so grateful for the built in stuff that I have. Like I have a built in once a month massage that I go faithfully regardless of how I'm feeling. And I have a built in appointment monthly with my hairdresser. And I have the circle of women page on Facebook that I can go to every day and draw inspiration from. Even though I wasn't putting much inspiration into the page, I was drawing inspiration from the page. And we had the wonderful circle of women event. It was a weekend event at Marryondale. And I'm sure anybody there wouldn't say, Oh, Casey has hit the wall. Because when I'm in that kind of setting, When I'm in a group of women and the conversation is all about being better, Growing, Loving life, Being connected, I'm okay. You know, That's my lifeboat. You can have burnout and manage to get through major things. And I did love that weekend so much. There's so much I want to unpack from that. It was a super, Super event. And we're going to have another one August 12th. And I promise you, I won't be depressing by August 12th. But I also promise you, I am taking my time with this. Whatever this is needs my full attention. All of the things that I put off, The uncomfortable conversations or difficult situations, I've already reestablished many boundaries. Boundaries protect us so much. And when you're not feeling 100%, People can just blow by your boundaries. Like the Roadrunner. Beep, Beep. And you're left thinking, What the heck was that? Anyway, This is all to say, I'm taking my time. I'm not 1000%. But you know, I tell you everything. So you might as well come along for this journey too. Casey has found herself with a beautiful case of burnout. It makes me a little embarrassed to say it. It makes me sad to say it. But in the face of all that's going on in the world and the sadness that we are all dealing with every single day, From the terror that Ukrainian people are living through, To the difficulties many have here trying to keep up with the price of things, Including gas, We can still experience our own personal burnout. I know all the things. I know all the things. Thought I was doing all the things. And still, This can happen. So come with me on a journey. The journey has begun on the Facebook page called the circle of women. It's a 40 day journey. I will be there every day for the next 40 days, Posting something every day to the page. And I'm asking everyone to join me on this journey from now through Easter, To take 40 days and commit yourself to a plan of action and commit yourself to the other women who are on this 40 day journey with us. So maybe there's something in your life you'd like to improve. I'm going to be working on bringing more peace and balance into my life. I'm going to be working on bringing more joy into my life. You might want to craft this journey your way. Maybe you'll give up gossip, Or give up complaining about that person you're always complaining about. Or maybe you'll take up walking or meditating or singing, Or take on some course of study. It's a 40 day journey. You can read all about it. Circle of women on Facebook. Sorry, Guys, You can still do the journey with us, But you're not going to get the daily inspiration. So please check that out. And I hope you will join me there. And I know somebody saying, Oh, She hit a wall. She has burnout. And what is she doing? She's starting a 40 day journey. Everything I do, I do to help myself. So I really am doing this. It starts on my birthday. So I'm doing it for me. And I'm taking you with me if you want to come, You don't have to come. So that is why there hasn't been a podcast in a while. Maybe you didn't even notice. And that's okay, Too. But imagine if you can what it felt like to me, Doing the podcast every week is my greatest joy. So imagine what it felt like when I had no energy for that. And week after week after week, I went into the producer and said, Play a repeat, Play a repeat, Couldn't find it in me. And I'm not even happy about this podcast, Because I'm not doing what I love to do, Which is feed you positive information that you can use in your life. But we do have a little bit of that on the way. I managed to get somebody on the phone and do a little interview. And I am going to share that with you right now. And how fitting that the one interview I managed to make in the last three weeks is with a journalist who was talking about medical conditions you can't see. Megan O'Rourke is a pretty incredible person. She's the author of The Long Goodbye, And she's written some poetry collections as well. Megan, The recipient of a Guggenheim Fellowship and many other awards is the editor of the Yale Review. Her writing appears in Atlantic Monthly, The New Yorker and The New York Times. Megan O'Rourke has a new book called The Invisible Kingdom, Reimagining Chronic Illnesses. And in this book, She shares groundbreaking research on one of the most mysterious medical realities of our time. And that's the rise of chronic illness and autoimmune disease. She knows of what she speaks. So beginning in my 20s, I started experiencing a mysterious set of symptoms that would come and go, Sending me on a roller coaster, A health roller coaster. So these were strange, Amorphous symptoms like brain fog that would suddenly come over me. Bouts of fatigue, Although fatigue is really far too weak a word. This was like total enervation. Dizziness and racing hearts. And strange electric shocks that would go all over my body and a lot of pain. Yeah. So I basically began looking for answers and going to doctors and doctors would do a set of labs and then say, You seem fine. I can't find anything wrong with you. Maybe are you a little stressed? And this set me on a more than 10 year quest to find answers and get recognition from the medical system that in fact something really was going on in my body. Are you cured? No, I'm not cured. So one of the sort of quests of this book is to talk about what it's like to live with chronic illness, Illness that is never going to go fully away. That said, I'm really lucky that I did get some diagnoses after my decade of search and was diagnosed with and treated for Lyme disease as well as an autoimmune disease and a nervous system condition known as POTS. And all of those treatments and therapies have really helped me so that I was able to write this book and I have a family and I, You know, I have a life. I have to circumscribe it, But I have a lot of hacks as they say, But I have a life now that I did not have when I was at my second. We had somebody on once talking about POTS briefly. Can you tell us what that is? Absolutely. So POTS has been in the news a lot because in many patients who get COVID, Even patients of mild cases of COVID end up with something that looks a lot like POTS. So POTS can be triggered by all kinds of different infections. There can be genetic reasons for it, But in what it is, It's postural orthostatic tachycardia syndrome. So that's a big name, Big word, Big set of words. But what it is is sort of when your autonomic nervous system, Which is your unconscious nervous system that regulates things like heart rate and blood pressure so that, You know, When you stand up from sitting, You know, Enough blood goes to your brain that you don't think. In people with POTS, The system is a bit broken. It's not working properly. They're not getting that blood flow to their brain in key moments. Their heart is racing to stabilize blood pressure. And people with POTS can feel really tired, Have racing hearts and other problems. Two things I want to jump back to. Firstly, I could picture you going to the doctor and sitting on the edge of the table and the doctor saying, Are you under stress? And at the same exact time I could picture that, I could picture, I doubt a doctor would say that to a male patient. Am I making a wild leap? No, I mean, Evidence does suggest that women's illnesses are psychologized, Right? A lot more than men's and that women are often offered things like sedatives instead of painkillers if they go to the doctor or the ER or the hospital complaining of pain. That said, I think men struggle with this too. I think anyone in America who has a hard to measure disease that there's not an easy medication for faces challenges in our current medical system, Which excels at acute care and quick fixes and crises, But really struggles in many parts of America. And of course there's some amazing doctors out there, But does struggle broadly to deliver that kind of recognition and careful search that might uncover a whole set of health problems. Were you a writer when this journey began? I was, Yeah. I was a writer. All right. And was it a hard decision to write about this or was that easy? It was really easy to write about it. The challenge though was that when I was really sick, I couldn't write. The brain fog and fatigue I had were so extreme in ways that might be familiar to any of your listeners who are living with long COVID that I really couldn't write more than a sentence at a time. And so one of the hardest and loneliest parts of my illness was that I was estranged from my very sense of who I was, Right? I could no longer do this thing I loved. So when I got better enough after being treated for Lyme disease to have some cognitive function back, I knew immediately that I wanted to write about this because I needed to better understand it. And because I had realized this was not just my story. This was the story of tens of millions of Americans also struggling to get recognition and treatment. Okay. So tell, I'm trying to think where can I do the most good here? Aside from sending everyone to read your book, The Invisible Kingdom, Reimagining Chronic Illness, What should we know about how to deal with people who have these long invisible illnesses? Yeah, It's such an important question. The very most important thing is to recognize them, To say, This is real. I may not be able to see it, But I see you and I hear you. I think the lack of recognition is making these illnesses so much harder for people to live with because your illness isn't appreciated by those around you. And it also means you have no hope of treatment or even feeling that your illness is meaningfully contributing to greater scientific knowledge. So very first thing is recognition. The second thing is that the lack of control that people with these invisible illnesses that may come and go and affect different parts of the body, The lack of control is profound. And so just to have patience and try to imagine what it would feel like if you yourself were living a life where every day you didn't know exactly what the day would bring and if you'd have energy to get through it. The amazing and accomplished Megan O'Rourke, The book is called The Invisible Kingdom Reimagining Chronic Illness. And she draws on her own medical experiences as well as a decade of interviews with doctors and patients and researchers and public health experts. And the topics covered include everything from chronic fatigue syndrome, Lyme diseases, Ulcers, Fibromyalgia, All of these things affecting millions of people and growing even greater she writes with the advent of long COVID. So Megan O'Rourke synthesizing all that she's learned about this elusive category of invisible illnesses and she writes it to help others going forward. Megan O'Rourke, Easy to find on all the social media and the book is easy to find too, The Invisible Kingdom Reimagining Chronic Illness, A book that is sure to help many. And now I'll bring you a little personal good news and that is Let It Shine, Inc. , The organization that gathers love and gives it away. We're going to branch out a little bit and maybe this is why we were invented, I don't know. We're going to branch out a little bit and start doing work with mothers and daughters. At the pantry and the boutique, Moms keep bringing me their seventh and eighth grade daughters and saying, Can you give my daughter some work to do? Can you give my daughter some volunteer work? It would be beneficial to her. It would be great for her to focus on something else and on and on and on. And I keep saying no because the work that we do at the pantry and the work that we do at the boutique, There's just nothing there for kids. Food is heavy, It's hard to carry. We've got a steep staircase. We serve a lot of people quickly and we see a lot of things that kids might not process well. Plus at the pantry, We have a huge commitment to keeping our shoppers protected. We'd prefer that a shopper doesn't come in to shop and see one of their kids' friends serving them, Right? We really try to protect to create comfort for our shoppers and the highest amount of dignity. And I started to think all this wonderful work that we do at women's retreats, We can do them for seventh and eighth grade girls. Middle school right now seems to be a really tough time. Girl bullying seems to be something that's exploded and mother's anxiety is exploding right along with it. So coming up in the coming months, Let it Shine is going to be offering first a mother-daughter luncheon and then we'll also be launching a Facebook page for girls. Like we have the circle of women, We're going to have a page called Let it Shine Girl and that'll be a place for young girls to get together, Feel safe, Support each other, Exchange healthy ideas. So that's one good news item I wanted to mention. Another good news item I want to share is I read a book called Toxic Charity. Someone in conversation mentioned to me the title of the book and I immediately understood it and I immediately realized what I had been trying to put my finger on for so long at the pantry that Let it Shine operates and it's operating now three years. And that is the greatest thing we could do for our shoppers is not only give them a safe place to shop and a beautiful place to shop and dignity and privacy, But duh, We could also let them run the pantry. Doesn't that make sense? Instead of our volunteers handing things to them, They themselves can bring the food in, Stock the shelves and give to each other. They'll teach us what we don't know. So that's a big change coming to the pantry and I share that with you because if you're in volunteer work, It might be something you could put into effect in your volunteer world. We know the wonderful feeling that we get after having volunteered for a day. That's the greatest gift we could give our shoppers to give them that feeling to let them run the show. So that's just an exciting idea I wanted to share with you. And meanwhile, Yes, We are putting the finishing touches on our August 12th, 13, 14 retreat at Marian Dale and Ossining. Yes, The rooms are air conditioned. Yes, We get the pool to ourselves all day overlooking the Hudson and we're planning for a wonderful weekend. And by then I should be fully certified as a restorative yoga teacher. So bring extra pillows and blankets because I'm going to be propping you up for sure and helping you relax. Meanwhile, I'll be tending to my own self care and hope to have a fully inspiring show for you next week. By the way, It just hit me. I really can bring men along for the journey on our 40 day journey. I'm just going to put the whole thing on Instagram too, Right? I can do that. So follow me on Instagram. Let me check what my Instagram name is. My Instagram name. Oh, It's Casey Shine On. That makes sense. Casey Shine On. So join me on Instagram and the 40 day journey will begin right away. Our thought for the day. And that's from Alan Cohen who said, Do not wait until the conditions are perfect to begin. Beginning makes the conditions perfect. Shine On. You've been listening to Shine On, The health and happiness show with new episodes every week. It's your time to shine on.

Reviews

This resonated in so many ways 💜 I was in a funk recently and decided to accept it rather than berate myself, for not being able to "snap out of it", which is what I used to do 💜 Thanks for reminding us that we're all human. 🙏