A Friend for the Long Haul: A Long Covid Podcast

In this special, one-off pre-holiday episode, I talk about the importance of self-care during the holiday season and offer support for navigating stress. I'm about a month out from having my therapist(s) call an intervention on me, declaring that I'm "past burnout and into collapse," but I'm also the person at home who handles most of the invisible "holiday magic making." I can't take that on this year. I've been listening to lots of meditations on Insight Timer and Calm, and while they've been wonderful, I haven’t found anything that says quite what I need to hear. So, I made a meditation just for me. If you're a spoonie, I think some of it may resonate with you. If you'd like to follow A Friend for the Long Haul on social media, find me on Instagram: https://www.instagram.com/afriendforthelonghaulpodcast/Substack: https://f4lh.substack.com/TikTok: https://www.tiktok.com/@afriendforthelonghaulpod/I sell Long Covid, chronic illness, and disability themed shirts and mugs and stuff: https://www.bonfire.com/store/a-friend-for-the-long-haul/I also have an Amazon Wishlist, if you'd like to support me that way! We have a kiddo having surgery soon and it'd be a huge help to get some things she needs: https://www.amazon.com/registries/gl/guest-view/YLQ6XEWA29IZ?ref_=cm_sw_r_cp_ud_ggr-subnav-share_QQDV03K3E3ZD2T8S45RGBut the best way to support the podcast is to like, share, and review. Thank you!Keywords: holiday self-care, guided meditation, burnout, mental health, relaxation, mindfulness

Welcome to A Friend for the Long Haul - A Long Covid Podcast! This is the last season 4 episode. I'll be taking a break for a few weeks. Season 5 is going to be about friendship, sex, and relationships and I've already lined up a lot of coaches and therapists who have long covid so we can tap their brains and get some insights. I'm so excited about it!For our season finale, I brought together two lovely people who are actively changing how medicine and research treat chronic illness: Dr. Wes Ely and Dr. Julia Moore Vogel. Sadly, we did have some technical issues and I don't have any video for Dr. Julia, and only got 15 of the 30 minutes of Dr. Ely's audio. Nevertheless, we persist. Dr. Ely joined me first to talk about whole-person care, what he learned from decades in the ICU, and his work leading the REVERSE-LC trial. Then, Dr Julia and I dive into what it means to be both a scientist leading research at Scripps, specifically studying repurposed tirzepatide in the Long COVID Treatment Trial-Tirzepatide (LoCITT-T) trial, and someone navigating Long COVID in real time. She shared something early in our talk that hit me deeply: as patients with limited energy, we do not have to spend our precious reserves trying to convince the wrong doctor when we could be looking for the right one.We talk about step counts as real data, pacing without shame, the emotional toll of medical appointments, and the quiet joy of being able to crochet and craft again after years of visual and cognitive limits.We also get into what it really means to be a "refined badass" when your body is struggling.Thank you so much for being here with me this season. If this episode brought you comfort or clarity, please share it with a friend who needs to feel seen.Timestamps:00:00 - The "refined badass" shirt reveal & opening02:03 - Introducing Dr. Julia Moore Vogel & Dr. Wes Ely03:33 - Why human stories matter in medicine & Janet Keith's story06:00 - Julia’s work on the Lockett trial (repurposed tirzepatide)11:53 - Dr. Ely on what doctors miss about Long COVID & infection-associated illness17:57 - Finding the right doctor vs. convincing the wrong one24:35 - What the tirzepatide trial is trying to answer38:17 - How Julia protects her energy and avoids crashes53:28 - Step counts, pacing, and quiet wins56:21 - Crocheting again after years of limits & closing reflectionsTo support me and my work:I have an Amazon wishlist that's totally unhinged and has items to help me, our neurospicy and disabled home of 6, and the pup.Check out my snarky long covid merch shop. I don't keep this money, I filter it into community care and donations to supportive orgs. Follow me on Instagram, TikTok, or Substack. But the biggest way you can support me listening, sharing, liking, and recommending the podcast. Thank you!

Welcome to a new episode of A Friend for the Long Haul - A Long Covid Podcast! Claire Jones, co-founder of Sista Creatives Rising and creator of Musings of a Black Disabled Elder, is a repeat guest of the pod. She has developed a five-part framework for navigating life's chaos: Clarity, Awareness, Presence, Acceptance, and Gratitude. In this episode, Claire and I talk about what it means to build a life when illness, disability, trauma, grief, and change knock us sideways.We talk about:Learning to live and resist within your capacity, and why your contribution doesn't have to look like anyone else'sClaire's experience with cancer and how it changed her relationship with self-love, joy, and worthinessWhy acceptance isn't the same thing as forgivenessGrieving the life you thought you would have while still making room for a different kind of joyThe cognitive cost of constantly trying to manage other people's experience of youLiving a COVID-conscious life without allowing other people's perceptions to define what makes a life rich or fulfilling"Getting ahead of life before life gets ahead of you”Claire reminds us that life will always contain suffering, disruption, and uncertainty. The goal isn't to become so grounded that nothing ever knocks us off course, it's to develop a way back to ourselves.Read Sista Creatives Rising and Musings of a Black Disabled Elder on Substack.A Friend for the Long Haul is a podcast about chronic illness, disability, Long COVID, community, and the messy business of building meaningful lives when our bodies and circumstances don't cooperate with the plans we made.If this conversation resonates with you, subscribe/follow the podcast and share it with someone who might need it.#LongCOVID #ChronicIllness #Disability #DisabilityCommunity #ChronicIllnessCommunity #Acceptance #Grief #SelfLove #SistaCreativesRisingFind Claire and Amaranthia's Instagram account for Sista Creatives Rising here: https://www.instagram.com/sistacreativesrising and their website is: https://www.sistacreativesrising.com/ Follow A Friend for the Long Haul - A Long Covid Podcast on Instagram: https://www.instagram.com/afriendforthelonghaulpodcast/A Friend for the Long Haul is a one disabled woman produced podcast. If you'd like to support my work, you can:Check out my shop, full of snarky long covid and chronic illness shirts, mugs, and bags. Any proceeds from the shop go right back to the podcast, or community care/mutual aid.I have an Amazon gift registry focused on back to school and things that would help at home. We're a family of 6 neurodivergent and disabled baddies. All 4 kids are heading back to school next week, and any help is always appreciated.Venmo me at: afriend4thelonghaulOr, just listen, review, and share this podcast! Thank you!

In this episode of A Friend for the Long Haul - A Long COVID Podcast, I'm joined by Charlie McCone. Charlie is a Long COVID advocate, contributor to The Sick Times, member of the Patient-Led Research Collaborative, someone whose work has become deeply woven into the LC community, and another guest I was convinced was too cool to come on the show.Charlie and I talk about what happens when your life is changed by an illness that most people still don't understand, if they even think it's real. We explore why Long COVID has been so difficult for the public to grasp, why facts alone don't seem to be enough to create change, and the role storytelling plays in helping communities be seen, believed, and understood.We also discuss the concept of "hypocognition," which is what happens when society lacks the frameworks to recognize a problem, and how this shows up in the experiences of people living with chronic illness and disability, as well as disability culture, patient-led research, the power of first-person narratives, how communities organize, and what keeps people speaking up when progress feels so very painfully slow. We also chat about Charlie's friendship with Alice Wong, and the lessons he learned from her about advocacy and life.You don't have to live with Long COVID to understand how it feels to try to find purpose when your life takes an unexpected turn. But if you do have LC, are navigating another chronic illness or disability, you're supporting a loved one, or trying to better understand what millions of people have experienced over the last 6 years, I think we took a really good look at how people telling the truth about what they've lived through is a powerful way to drive change. Charlie, thanks for your work and for joining me!Find Charlie on Instagram: https://www.instagram.com/loscharlos/Bravely, on X: https://x.com/loscharlos?lang=enOn Threads: https://www.threads.com/@loscharlos His amazing piece, Alice Wong showed us DIsability Justice makes our advocacy stronger: https://thesicktimes.org/2026/04/10/alice-wong-showed-us-disability-justice-makes-our-advocacy-stronger/Find Beth on Instagram: https://www.instagram.com/afriendforthelonghaulpodcast/Treat yourself to some Long COVID merch in my shop and support this podcast and mutual aid: https://www.bonfire.com/store/a-friend-for-the-long-haul/Read my Substack: https://f4lh.substack.com/

What happens when the life you planned collides with the reality of chronic illness or disability? Is it still possible to build something meaningful, even if your energy, body, and definition of success have changed?In this episode of A Friend for the Long Haul, I'm joined by entrepreneur and creator Katrina from https://www.katrinadreamer.com/ for an honest conversation about what it really looks like to pursue your dreams while living with chronic illness.Together, we explore the tension between ambition and acceptance, the pressure to "keep up," and the ways disability forces us to rethink productivity, purpose, and success. We talk openly about the grief of letting go of old expectations, the creativity required to build a business around fluctuating health, and why sustainable entrepreneurship often looks very different from the stories we're told.Whether you're considering starting a business, navigating a career after illness, or simply trying to figure out what comes next, this conversation offers reassurance that there isn't one "right" path forward. Sometimes the dream doesn't disappear, it just evolves.We DiscussThe realities of entrepreneurship with chronic illness and disabilityRedefining success when your body has new limitsLetting go of productivity myths and unrealistic expectationsBuilding a business that supports your health instead of sacrificing itNavigating uncertainty, identity shifts, and changing dreamsWhy being flexible isn't giving up, it's a strategy for sustainabilityIf you've ever wondered whether your dreams still have a place after illness, I hope this conversation reminds you that they do. They may look different than you imagined, but they can still be deeply meaningful.Connect with KatrinaVisit Katrina at KatrinaDreamer.com and follow their work to learn more about their experience.On Instagram: https://www.instagram.com/katrinadreamer Co-founder of Covid Safe Colorado: https://www.instagram.com/covidsafecolorado/The Covid Logs Co-Editor: https://www.instagram.com/thecovidlogs/Writer of Chaotic Good and the Banned Bookmobile webtoon: https://www.instagram.com/chaoticgoodcomic/Connect with BethOn Instagram: https://www.instagram.com/afriendforthelonghaulpodcast/On Substack: https://f4lh.substack.com/If this episode resonated with you, I'd love for you to subscribe, leave a review, or share it with someone who's learning to build a life that works with their body, not against it. I'm trying to learn that living well with chronic illness isn't about doing more.If you'd like to support my work, you can Venmo me at afriend4thelonghaul, you can check out my merch shop for Long Covid and chronic illness merch : https://www.bonfire.com/store/a-friend-for-the-long-haul or you can help my family of 6 disabled folks survive summer at home together by sending us a little something from my Amazon wishlist. Thanks!

Welcome to Season 4, Episode 11 of A Friend for the Long Haul - A Long Covid Podcast! For Week 3 of Camp Long Haul, we're exploring The Great Accessible Outdoors and this conversation changed the way I look at the plants growing outside my front door. In this episode, I got connected with April Thompson, who has had ME(/CFS - I'm adding it because a lot of people search for it when looking for help) for most of her adult life, an urban forager, artist, and founder of the Chronic Market, where you can buy "beautiful, one-of-a-kind items and unique services offered by artists, artisansand entrepeneurs around the world suffering from ME/CFS, a debilitating chronic illness.Living with ME/CFS for over 20 years, April has found a way to stay connected to nature, curiosity, and creativity by being curious what's growing around her. After a series of technology mishaps (including a waterlogged phone and a last-minute change of plans), April gives us an impromptu tour of the edible and medicinal plants she can find just steps from her home in Washington, DC. This was a really sweet introduction to urban foraging.We talk about:Urban foraging for beginnersAccessible ways to connect with nature while living with chronic illnessME, pacing, and finding meaningful hobbies within your spoonsDandelions, plantain, lamb's quarters, mugwort, wood sorrel, amaranth, mallow, and moreThe nutritional benefits of wild foodsAbout Camp Long Haul:Camp Long Haul is a low-key virtual summer camp experience for people living with Long COVID, ME/CFS, dysautonomia, chronic illness, disability, neurodivergence, and anyone whose life doesn't fit the traditional summer adventure story. Every activity is optional, asynchronous-friendly, and designed with pacing in mind.Connect with April:Instagram: @chronicmarketplaceInstagram: @prillyteehttps://aprilwrites.com/ Connect with Beth on Instagram @afriendforthelonghaulpodcastGet Camp Long Haul Merch on my Bonfire shop: https://www.bonfire.com/store/a-friend-for-the-long-haul/ Support this podcast by sharing, liking, and subscribing! If you're so inclined, I also have a summer wishlist on Amazon for our super queer, neurodivergent family. #LongCOVID #MECFS #ChronicIllness #DisabilityCommunity #UrbanForaging #Foraging #AccessibleOutdoors #NatureConnection #Pacing #Dysautonomia #MCAS #ChronicIllnessLife #DisabilityAwareness #CampLongHaul #AFriendForTheLongHaul #SpoonieLife #Gardening #CommunityCare #AccessibleAdventure #ChronicMarket

Welcome to S04E10 of A Friend for the Long Haul - A Long Covid Podcast! I accidentally invented a virtual summer camp for Spoonies after having a small existential crisis in my Instagram stories.In this episode, I talk about why summer can feel surprisingly painful for chronically ill and neurodivergent people, especially parents, caregivers, and anyone grieving the life they thought they’d have. Between Long COVID, autism, ADHD, sensory overwhelm, heat intolerance, and the logistical nightmare of trying to “summer normally,” I realized what I actually need is community, ritual, silliness, softness, and something to look forward to.Enter: Camp Long Haul.A fully optional, low-pressure, asynchronous virtual camp for spoonie folks featuring themed weeks, crafts, scavenger hunts, campfire chats, hydration flotillas, ghost stories, pacing tips, and absolutely zero requirement to keep up or explain your absence.Lurkers welcome, goblin mode accepted, no assholes. Grab your flotilla and let's camp!Key topicsWhy summer can feel isolating and emotionally difficult for chronically ill and disabled peopleParenting in a fully neurodivergent household while managing chronic illnessCreating accessible community spaces for Spoonies and Long HaulersThe structure and philosophy behind Camp Long HaulLow-pressure participation and asynchronous community buildingThemed weeks, campfire chats, scavenger hunts, crafts, and low-spoon activitiesPacing, overstimulation, burnout, and adapting expectationsFriendship, belonging, ritual, and chosen family in disability communitiesCommunity rules around respect, consent, and psychological safetyReclaiming fun, softness, and creativity after trauma and illnessresourcesWhose Land — Whose LandInstagram account for Ray and Stormi (pet enrichment & disability-friendly dog training): Ray and Stormi Instagram and TikTok: Ray and Stormi TikTokEmbracing Enchantment — Embracing Enchantment PodcastSupport this PodcastI'm a disabled lady doing this whole podcast on my own. If you would like to support the podcast, please subscribe and follow, engage with my posts, comment, and share episodes that resonate with you! Those are the biggest ways you can support me and my work.If you'd like to get some of my merch, check out my Bonfire shop! All proceeds are funneled back into the podcast for tech or used for community care and mutual aid. I don't keep the proceeds.I do have an Amazon gift registry that I update for the summer each year. We are a blended family of 6 and all of us have disabilities. Some of our kids have complex medical issues as well as intellectual and physical disabilities, and we're increasingly neurodivergent. Summers get emotional, kids get boring, and the parents work from home without a "village" or the luxury of childcare. This summer gift registry keeps us afloat.---If you'd like to be a guest on the show or suggest a guest, please use this form! https://forms.gle/q9wiV6mQ4G3SMBu99Thank you for listening to and supporting A Friend for the Long Haul!KeywordsLong COVID, Spoonie community, chronic illness podcast, neurodivergent adults, autism, ADHD, virtual summer camp, disability community, accessible community, chronic illness support, CPTSD, pacing, burnout, neurodivergent parenting, accessible joy, online community, disability advocacy, mental health, summer loneliness, chronic illness isolation, low spoon activities, asynchronous community, virtual support group, EDS, chronic fatigue, inclusive spaces

Welcome to S04E09 of A Friend for the Long Haul - A Long Covid Podcast. This episode is part two of my catch-up chat with Megan Wages, my second-ever podcast guest, first wave Covid long hauler, co-owner of Fancy Free Nursery in Tampa, Florida, and the guest of last week's S04E08, Running a Small Business as a Covid Long Hauler with Megan Wages. In this episode, we talk about plants! I've become a plant lady in the last 6 years, and I've noticed that my plants tend to tell me a lot about how I'm feeling. First I noticed that the downstairs ones were fine. The upstairs ones were so sad. Turns out there's a reason for that. In Part 2 of this two-part episode, we get into the actual plant content. Specifically: what should a spoonie with limited energy, unpredictable symptoms, and a complicated relationship with energy actually grow?The answer is: more than you think. Megan walks through her spoonie-approved plant list, propagation tips, why your Calathea's attitude is not your fault, and the thing fluoride in tap water does to your spider plant. She also answers listener questions live, talks about soils, orchids in wine decanters, and the surprisingly emotional experience of a plant that keeps coming back no matter how badly you've neglected it.There's also a spider plant baby giveaway. Alysia won. She lives in a basement apartment and this is probably the perfect plant. I wish I had the spoons to get to the post office and send it to her. One day, my love!!! I promise!IN THIS EPISODE:Snake plants and ZZ plants: the spoonie ride-or-diesZZ Raven: the black plant for the goth baddiesPothos propagation and the hormone tip nobody talks aboutWhy I am a self-described prop lifterThe "teats" moment (you'll know it when you hear it)Ripsalis: if spaghetti became a plantSpider plants and the fluoride problemBurgundy rubber tree, Tineke, and the fiddle leaf fig blue sky tipOrchids in wine decanters: the lab aestheticAlocasia: pretty, finicky, spider mite magnetsWhy Walmart plants are a gamble (the fish department story)LECA: the water-to-soil bridge methodYour plant's health as a mirror for your mental healthListener questions answered Spider plant baby giveaway 🌱LISTENER QUESTIONS ANSWERED:Tara's 20-year fiddle leaf fig: how to help her thriveMonstera propagating in water: when and how to move to soilCan you bring an orchid back to life?Best plants for a low-light basement apartmentYou can find MeganFancy Free on InstaMegan on TikTokA Friend for the Long HaulA Friend for the Long Haul on Insta and TikTokSubstack: https://f4lh.substack.com/The podcast playlist on SpotifySupport this PodcastI'm a disabled lady doing this whole podcast on my own. If you would like to support the podcast, please subscribe and follow, engage with my posts, comment, and share episodes that resonate with you! Those are the biggest ways you can support me and my work.If you'd like to get some of my merch, check out my Bonfire shop! All proceeds are funneled back into the podcast for tech or used for community care and mutual aid. I don't keep the proceeds.I do have an Amazon gift registry that update for the summer each year. We are a blended family of 6 and all of us have disabilities. Some of our kids have complex medical issues as well as intellectual and physical disabilities, and we're increasingly neurodivergent. Summers get emotional, kids get boring, and the parents work from home without a "village" or the luxury of childcare. This summer gift registry keeps us afloat. ---If you'd like to be a guest on the show or suggest a guest, please use this form! https://forms.gle/q9wiV6mQ4G3SMBu99 Thank you for listening to and supporting A Friend for the Long Haul!

Welcome to S04E08 of A Friend for the Long Haul - A Long Covid Podcast! I'd like to share that this will be the first installment of a change to the podcast: shorter episodes! Longer recordings will be chunked into more digestible episodes, for all our spoons.Six years ago, my friend Megan bit into a raw onion to see if she could taste it. She couldn't, and that's how her long covid story starts. She was my second guest on this podcast, and in this segment, she's back to give us an update on how she's feeling and to talk about what it's like to run a small business with your spouse when you get sick. Megan is the co-owner of Fancy Free Nursery in Tampa, a first wave long hauler, and we discuss:Long covid friendshipsPerimenopauseGLP-1s (anecdotal! talk with your doctor! don't judge other people! don't compare yourself!)Running a plant shop and floral nursery during lockdownHow plants saved the shopBusiness collabsUsing and running social media when you're your only teamBranching out into silk floralsYou can find MeganFancy Free on InstaMegan on TikTokA Friend for the Long HaulA Friend for the Long Haul on Insta and TikTokSubstack: https://f4lh.substack.com/The podcast playlist on SpotifySupport this PodcastI'm a disabled lady doing this whole podcast on my own. If you would like to support the podcast, please subscribe and follow, engage with my posts, comment, and share episodes that resonate with you! Those are the biggest ways you can support me and my work.If you'd like to get some of my merch, check out my Bonfire shop! All proceeds are funneled back into the podcast for tech or used for community care and mutual aid. I don't keep the proceeds.I do have an Amazon wishlist that I add everything I need or randomly like to and you can 100% track my state of mind, hyperfixations, and fears looking at it. ---If you'd like to be a guest on the show or suggest a guest, please use this form!Thank you for listening to A Friend for the Long Haul!

Welcome to season 4 episode 7 of A Friend for the Long Haul - A Long Covid Podcast! What can tarot have to do with rebuilding your sense of self after chronic illness? More than you might think.I sat down with Megan Hamilton, a professional tarot reader, speaking coach, musician, and host of the Embracing Enchantment podcast, for a conversation about identity loss, the grief of realizing you can't go back to who you were, and why the safety we thought we had was maybe never quite real to begin with.Megan introduced me to a concept called self-efficacy, which is the idea that keeping the promises you make to yourself, even tiny ones, builds the kind of trust with yourself that actually sticks. We talked about why celebrating a small win is genuinely neurological rewiring, not toxic positivity. And somehow we ended up at a very personal confession about how long I sometimes wait to go to the bathroom.We also got into tarot as a tool for accessing truth you can't reach through thinking alone, why ritual doesn't have to be elaborate to be meaningful, and what it actually looks like to find magic inside a life that's been turned upside down.Megan is one of those people who makes you feel immediately at ease and then quietly rearranges how you see things before you've realized it's happened. This one is for anyone who is learning, slowly and imperfectly, to treat themselves like someone worth taking care of.Find Megan's podcast information at embracingenchantment.com and follow Embracing Enchantment wherever you get your podcasts. If you'd like to book a reading with Megan, or work with her as a coach, check out https://www.impactwitch.com/ Resources & mentions in this episode:Mundane Magic by Molly Donlan (Megan mentions "pub day" for this new book. We recorded this a few months ago and I've been delayed in releasing new episodes because of my TBI symptoms.) Self-efficacy: concept introduced by psychologist Albert BanduraConnect with A Friend for the Long Haul:Email: [email protected] Haul Line: 720-432-9368Substack: f4lh.substack.comMerch: Bonfire shopAmazon storefrontAnd on Instagram at both https://www.instagram.com/impactwitch and https://www.instagram.com/embracingenchantmentpod This show is just me. One AuDHD, queer, disabled lady with multiple chronic illnesses and one very mildly decent mic. I do everything you just watched with no team, no network, and no budget, which is either impressive or unhinged. Possibly both. If this episode meant something to you, I'd appreciate your kind support by sharing it with someone who would also enjoy it. You can also leave a review wherever you're listening, spoons permitting. It genuinely changes what this little show can do. There's also merch and a chaotic Amazon wishlist that help loads if you want to support that way. Okay. That's it. Low budget, high love, always. I'll see you next time.Connect with Beth:Email: [email protected] Haul Line: 720-432-9368Substack: f4lh.substack.comMerch: https://www.bonfire.com/store/a-friend-for-the-long-haul/My Amazon WishlistVenmo: @afriend4thelonghaul