Hi Campers! I enjoyed seeing your clouds yesterday!

First, I’d like to give you the details for tomorrow’s Campfire Chat. Rather than Zoom, I’ll be using Google Meet, so that we have a little more time. I don’t have a Pro Zoom license, so we’re capped at 30 minutes, but I’m recording an interview today with April Thompson, a forager with ME. She’s going to show us the culinary delights we can find right outside our front door, as well as giving us a tour of her community garden, which is celebrating its 50th anniversary soon! We’ll watch that during the Campfire Chat and have time for some discussion, too. You can join the meeting with this link.

For an accessible nature treat today, I made you a playlist!

Camp Long Haul Nature Playlist

It has some webcams, some walks, and videos from one of my favorite YouTubers, Wendy Outdoors.

Thanks, everyone!

Campers, grab your pillows and look toward the windows. Today, I’m launching a new cousin to the A Friend for the Long Haul fam: The Chronic Cloud Collector’s Club. I’ll be starting it on Instagram first and maybe expand it, spoon-allowing, but it will be 100% community built!

Inspired by the spirit of the West Texas Cloud Appreciation Society - of which I am a lifetime honorary member - and the fact that I had no freaking idea what to do for this week’s activity. The WTCAS is a group that honors the sky, even if you can only see a tiny sliver from a back porch. Our new club is a dedicated space for chronically ill and disabled community members to submit photos, poems, drawings, paintings, and the like to appreciate the sky from our nests.

When your world shrinks to the size of a bedroom, a view of the sky feels like a balm on the days you can take it in.

Today’s Activity: Collect a Cloud

I’d like to invite you to practice the slow, radical art of cloudspotting. Set your timer for no more than 5 minutes (and know that you don’t have to take the full time!) Rest your head on your pillow, the arm of the couch, and look out the nearest window, or head outside and sit in your favorite chair, or lie in the grass if you can. I’d love to collect your unique view of the sky today, in whatever medium matches your spoons.

The Photographer: Snap a quick photo or a 5-10 second video of the clouds out your window (partial views, power lines, and window screens are all welcome)

The Artist: Sketch a quick, messy cloud doodle on a scrap of paper, or digitally paint the colors you see. Draw an animal around your cloud shape. Drop and blend some watercolors on paper to create your own cloudscape.

The Writer: Write a single sentence, a title for a cloud shape you saw, or a short poem. If you can somehow submit a dirty limerick or haiku, I’ll be impressed.

The Dreamer: If your blinds are closed or you’re in a dark room today, close your eyes and collect a cloud memory from your favorite past sunset. You can always share it on a day when you have more capacity. There are no deadlines at Camp Long Haul!

How to Submit

Become a founding member of the club by sharing your cloud creations!

On Insta: Post your submission to your grid or stories and tag either me at afriendforthelonghaulpodcast or at chroniccloudcollectorsclub. You can also DM it to either account if your account is private, just let me know it’s ok to share.

On Substack: Upload your art or share your poetry directly to the comments section below so your cabin mates can experience it!

Submission Form: I have set up a Google Form for submissions, too.

Spoonie Time

Please keep in mind that I’m sick too, and operating on Spoonie Time, so it may take a while for me to share submissions. Please let me know how to attribute your work! And thank you for helping our community by sharing your view.

The flag is raised on week 3 of Camp Long Haul, and the focus shifts to the Great Accessible Outdoors. Missing being outdoors is a deep, heavy grief held in our community, and the mainstream concept of “getting outside” often feels pretty exclusive and ableist. While not perfect…but what is…I’m hoping this week will bring some opportunities to bring a little joy.

The Focus

Nature isn’t just a mountain peak, it’s a sensory exchange that can be enjoyed in lots of different ways. When I get in a loop about what I can’t do, I get really mad about not being able to experience that on my terms. Eventually, I crave nature so much that dam breaks and I’m desperate for any kind of outdoor connection. At one point, in 2021, my MCAS was so bad that I couldn’t eat and some days I couldn’t drink water. If I took a step outside, I swelled up like Violet Beauregarde from Charlie and the Chocolate Factory and would either have an instant asthma attack or need an epi. I spent a lot of time staring at the clouds out the window because they’re gorgeous and it’s all I could get.

Out Week Opening Practice: Earth Blessing Breath

To ground us in the campground this week, we’re opening the cabins to a lovely 5-minute guided breath practice called “Earth Blessing Breath,” which you can find on Insight Timer for free. Here’s the description:

In this short breath practice, we notice how the breath connects us to the other beings in our environment and to our ancestors and descendants. Each breath is an exchange of life with the plants around us. Each breath is a gift from the ancestors and a wish for the descendants. Connection is as close as your next breath.

This was shared with me by Cedar, who leads the meditation and is a somatic practitioner with a history of chronic illness. There’s more information about them in their Insight Timer profile, and you can also find them on Instagram. Thanks, Cedar!

Wednesday’s Activity & This Week’s Badge

Check for a new post on Wednesday for the main activity options, inspired by the West Texas Cloud Appreciation Society. I’ll be launching a new Instagram account called the Chronic Cloud Collector’s Club. My aim is to create a permanent, gentle, creative repository of cloudy photos, art, videos, poems, and stories from spoonies that will outlive summer camp itself. I’ll share more information about that on Wednesday in the Activity post. In the meantime, this week’s badge is the Cloud Collector. I’ll share more information about that on Wednesday in the Activity post, but as you’re here, have your badge:

Agenda for the Week

Today, we have the flag raising and the meditation from Cedar. On Wednesday, we’ll have our activity. Thursday, I’ll be sharing webcams from the National Parks Service, as well as a nature playlist on YouTube. Friday, we’ll have our 3rd Campfire Chat, and I think we might have a guest speaker! Still waiting to confirm. But even if not, the last couple of chats have just been so sweet. That will be on Zoom again at 6 pm ET, and I’ll share the link on Thursday. Next Sunday, I’ll share links to any relevant podcast episodes from A Friend for the Long Haul. I’d also love to have another giveaway this week, but I either need the spoons to come up with something or a donation! :) looks around

Later today, I’ll be asking folks to share which cabin they’re in so y’all can get acquainted, and I’d love to hear from you: what is your favorite ever memory from being out in nature?

Dear Campers,

Set up your flotilla, pile up the pillows and Squishmallows, and get your nest ready. Tomorrow night, we’re having our first live camp gathering. I’ll be hosting our week 2 Campfire Chat as a live drop-in craft hangout on Zoom.

This isn’t a high-pressure video call or structured meeting. It’s a slow-paced, low-stimulation space to gather and co-exist. Bring your mini-zines, your knitting, coloring apps, or whatever work in progress you have…including just your resting body. You’re fully welcome to keep your camera off, lay there, and just listen to the chit chat like a radio show if you don’t feel up to participating.

Campfire Chat Logistics

• When: Tomorrow, Friday June 12th, at 6pm Eastern/5pm Central/4pm Mountain/3pm Pacific

• Duration: 30-45 minutes max, strictly timed to protect everybody’s batteries, but also, I don’t have a $professional Zoom$ account. We’ll probably get kicked off. Depending on how it’s going, we can always rejoin using the same link if needed.

• Where: On Zoom. Here’s the access info and link you can use to join:

  • Your Camp Director is inviting you to a scheduled Zoom meeting.

    Topic: Camp Long Haul Week 2 Craft Drop In

    Time: Jun 12, 2026 04:00 PM Mountain Time (US and Canada)

    Join Zoom Meeting

    https://us05web.zoom.us/j/81280430092?pwd=PH4Xepu8CMJdlivaEgAbZVjfg6pZFZ.1

    Meeting ID: 812 8043 0092

    Passcode: tWsW4X

The Live Giveaway Drawing

During the hangout, I’ll be doing a live drawing for the giveaway mentioned in Wednesday’s activity. As I said in the post on Instagram: don’t get excited! I’m poor. lol. It’s just a little something, but I’ve been crafting all week. You still have time to enter. I won’t cut off entries until 5 pm on Friday (eastern). Just be sure to drop your favorite low spoon craft tip, share a picture of your mini zine if you want to, tag a friend on one of the camp posts - or all 3 to get extra bonus entries.

See you around the “campfire!”

Welcome to Wednesday in the Craft Shack! Friend and honorary camp counselor Hayley Gilmore has created something for us: the official Camp Long Haul One-Page Zine Template!

A zine (pronounced “zeen”) is a self-published, small-circulation booklet or magazine. They’ve been vital tools for disability activism over the years, because they allow for creativity and the ability to share lived experience, marginalized voices, and uncensored personal stories without the constraints of traditional publishing. The template Hayley made for us is based on a legendary template by artist , and you can learn more about it in her Substack post, Let’s Make a Zine! You take a single piece of paper, make a few folds, cut a tiny slit, and it folds down into a pocket-sized 8-page book.

Click here to go to my Google Drive and download the templates.

Week 2 Activity: Start Your Camp Diary or Zine

Hayley’s printable one-page starter zine has a few simple questions about your summer experience so far. This can be an introduction to making your own camp diary or summer zine. Through the rest of camp, I’ll drop optional prompts so you can keep adding to your mini camp library.

Choose Your Own Low-Spoon Adventure

• Old-School Analog: Download Hayley’s template, print it out, and fill out the prompts using pens, markers, crayons, or whatever you have. The follow the quick printing guide.

• Digital Route (Zero Cleanup): Download the image and upload it to Canva or another editing app you like. Type or doodle your answers from your nest.

• Fully Freehand: Don’t have a printer? Grab a piece of scrap paper, fold it up using Kate’s classic method, and create your own entirely from scratch.

• Low on Spoons Today? If printing and folding are too much for your body today, don’t force it. You can screenshot the template and fill it out digitally on your screen, or just close your eyes and answer the prompts in your mind while you rest. Mental crafting is crafting!

Enter the Weekly Giveaway!

I’m giving away a piece of official camp swag to one lucky winner during Friday’s Campfire chat, but you don’t have to attend to win. To enter:

1. Leave a comment on this post sharing a low-energy craft tool, app, or spoon-saving tip that helps you in life, or

2. Share a picture of your completed zine, tag me here or on Instagram, and use #camplonghaul for a bonus entry!

3. Bonus Bonus Entry: tag a friend in these posts!

How to Fold Your One-Page Zine

If you haven’t made one of these before, don’t panic. I am not a great folder, but I managed it by watching Hayley’s instructional video, posted on Instagram.

More Info on Zines and Activism

A Brief History of Zines in the US from Purdue University

Politicizing Disability Through Zines

Disability Justice: A Reader’s Guide: Zines from Barnard College

Resistance and Self-Discovery Through Zines by Jen White-Johnson

In Zines, LGBTQ Creators Find a Place to Tell Their Own Stories via PBS News

Good morning, and welcome to week 2 of Camp Long Haul! Over the last week, I watched you settle into your cabins and start getting to know each other. From the cozy nests in the Pacing Pavilion to the balanced hydration and sodium fortress of the Salty Spoonie Sanctuary, I’m seeing a camp community form. Now, it’s time to open the doors to the Craft Shack.

The Vibe

The vibe this week is low-stakes creativity that doesn’t steal our spoons with cleanup and performance anxiety. Living with energy-limiting illnesses like Long Covid and ME means we have to get even more creative about creativity than other creatives. This week, we’ll aim to honor our imaginations without demanding perfection.

Week 2 Badge

Last week, everyone earned the “I Showed Up” badge just for being here. This week, the collectible celebrates the beauty of process over perfection.

How to earn it: You can earn this badge just by thinking about a project you’d like to do, making a totally messy scribble to get some grief out onto paper, using a digital coloring app on your phone, knitting a few rows from bed, or just honing the art of rest. Whatever works for you!

A Friday Giveaway!

To celebrate our creativity this week, I’ll be hosting a giveaway during our Friday Night Chat. My social media intern and I are making some friendship bracelets, and I’ll be giving away an official Camp Long Haul bracelet to one lucky winner. To find out how to enter, look for more information on Wednesday’s activity post.

Week 2 Itinerary

Monday (today): Welcome to the Craft Shack! Remember to check your pacing and boundaries. If you’re a spoonie maker, creative, artist, gardener…share one of your favorite creations and tag me!

Wednesday: The official weekly craft activity drops. This is also where you will submit your giveaway entries. The activity will offer both digital and by-hand options, and the template was designed by my friend, Hayley Gilmore of Ladies Who Design and Library of Congress fame, and is based on a template created by Kate Bingaman-Burt.

Friday at 6:00 PM ET: The Friday Campfire Chat. Grab your flotilla (bevvy of beverages at once), get cozy with your pillows and Squishmallows, and join for a drop-in craft hangout. I haven’t decided on a location yet (Zoom? Discord), but this week’s Friday gathering will NOT be on Instagram Live. More details to come. Bring whatever you want to work on, or just come hang out and chat. No cameras necessary, we can just chat and hang.

Do you have a favorite craft, hobby, or artistic pursuit? Has your disability or chronic illness impacted your ability to create? Are there ways you’ve adapted your practice?

Dear Campers,

As we prepare to gather around the totally imaginary fire this afternoon for our very first Campfire Chat (on Instagram Live at a little after 6 pm Eastern because I have therapy until that time, lol) I’m already looking ahead to week 2 of Camp Long Haul. On Monday, I’ll be raising the flag on The Craft Shack.

I want this camp to be fueled by our community, and I know many of us have spent years adapting our favorite creative hobbies to a new, lower-energy baseline. I just started crocheting again a few months ago. I would love to showcase your arts and crafts and share tips and lessons you’ve learned about reclaiming the things you love. I’d also love to hear what it means to you to get those things back. I catch myself crocheting and end up crying sometimes. Also, who are your favorite makers? Please tag or share links with me!

If you’re a chronically ill, disabled, and/or neurodivergent artsy craftster, I’d love to feature you next week. I’m looking for:

• Spoonie craft tips: how do you adapt your craft to save energy? Do you use a lap desk, wear compression gloves, use looms instead of knitting needles, or chunky markers instead of colored pencils?

• Digital crafts: Do you have a favorite low-stimulation phone app or tablet tool for coloring, digital collaging, or design that requires zero cleanup?

• Bite-sized tutorials and examples: If you have a short video, photo guide, or explanation of your process that you’ve already created, can you share it with me? Could I share it? I don’t want to ask anyone for labor! But if you have something you’d like shared, please let me know!

• Showoffs! Lol! Is there something you’ve made that you’re particularly proud of that you’d like to share? I’d LOVE to see it. We are such a creative and talented bunch!

Let me know what your craft is, your favorite tip, or a link to a post where you’ve shared your work. Living with energy-limiting illnesses means we have had to reinvent how we create, and I know there are some brilliant ideas and pacing wisdom out there!

Thank you!

What a sweet little week we’ve had kicking off Camp Long Haul. If you’re not sure what it is, Camp Long Haul is a low-energy virtual summer camp for spoonies hosted by me, Beth. I’m the host of A Friend for the Long Haul, which is a long covid podcast.

Each week follows the same cadence, even though our theme changes. Tomorrow is Friday, so we’ll be having our first “Campfire Chat” on Instagram Live at 6 pm Eastern. Ok, it might be a little bit after because I have therapy right before. :) If you can’t make it, it will be recorded.

Week 2 starts on Monday, the 8th of June, and the theme is “The Craft Shack.” If you’re a crafty spoonie who would like to share your favorite low-spoon crafts, you have a how-to or guide you’d like to share, or if anyone has requests for crafts, let me know! You can comment here or email me at afriendforthelonghaul@gmail.com.

Dear Campers,

Now that our gates are open and you’ve checked into your cabins, it’s time for our very first official activity.

Week 1 Activity - Create Your Name Tag

Your mission is to create a simple name tag that lets you introduce yourself at our spoonie summer camp.

There are absolutely no rules here, and the engagement and energy requirements are zero. If you’re not up to this, it’s ok! If you need help, holler! You can choose your own adventure. Say it out loud to yourself! Say it in your head! Write it on a scrap of paper from bed! Use Canva! Dig out your glue sticks and glitter! I outsourced mine to one of my kids.

Be sure to add your name/handle and any other information you’d like to share. Your cabin name would be good!

Once your name tag is ready, it’s time to hang it up so your cabin mates can find you. Scroll down to the comment section of this post and click the small camera icon to upload a photo or screenshot of your creation!

If you prefer social media, head over to Instagram, post your name tag on your stories or grid, and tag me or use the camp hashtag: #CampLongHaul.

A Gentle Reminder from the Camp Director: If your battery is sitting at 1% today and your only activity is visualizing your name tag in your mind while resting in a dark room, you have still completed the challenge and earned your Week 1 “I Showed Up” Badge. Pacing always comes first.

Welcome to day 2 of Camp Long Haul! The virtual gates opened yesterday, the flag is raised, and now it’s time to choose your cabin. At traditional summer camps, you’re assigned a bunk by a counselor. I thought it would be fun to select a cabin that matches your current baseline, energy boundaries, sense of humor, etc. The following 6 cabins, or themes around them, came up the most as I chatted with folks:

Horizontal Hideaway

The Vibe: PJs are the official uniform, and getting out of bed is never required. There are lots of different types of pillows in here.

Low Battery Bungalow

The Vibe: The official energy conservation unit. You know your body battery score and know that percentage is like pure gold. Batteries are protected here.

The Zebra Zone

The Vibe: The official comfort lounge for bendy bodies, complete with zero gravity chairs, KT tape, electrolytes, and Icy Hot.

The Pacing Pavilion

The Vibe: Sanctuary for anyone learning the art of letting go of pressure to push through.

The Salty Spoonie Shanty

The Vibe: This cabin could be for you if you’re running on electrolytes and adding pink salt to your Grillo’s, but it could also be for you if you’re in that phase where you’re tired of gestures broadly. Or both. I’m both.

Brain Fog Bunkhouse

The Vibe: A cozy space for those of us who just want the words that come out of our mouths to match what was in our brains.

Sensory Sanctuary

The Vibe: No big lights, heavy blankets, quiet, and penguin pebbling.

Pride Palace

The Vibe: Chosen family, queer joy, accessible events, good music.

How to Claim your Bunk

Scroll down to the comments and reply with the name of your chosen cabin and tell us about your current camp setup. Are you at home? In bed? Cuddled up with a pet?

Or, go to Instagram and share one of the cabin choices with the hashtag #camplonghaul

Hopefully we can use cabins as a way to make some new friends! I’ve also had requests to start a Discord with cabin channels, but yall, I’d need help with that. If you’re interested in helping with that, please holler.

Welcome to day 1 of Camp Long Haul, a virtual summer camp for spoonies, running through June and July! Just for good measure, I’d like to review the rules one more time:

1. Participation is optional. Laying down is always encouraged. There are no prizes for pushing through. Disappearing and returning without explanation is encouraged.

2. REST IS CAMP PARTICIPATION. There is no attendance tracking, or even registration. If you intend to participate and rest instead, you’ve earned a Rest Badge for the week. Look at you, you are an overachiever now.

3. Don’t be an asshole, please. No racism, sexism, homophobia, transphobia, ableism, body shaming, or general dipshittery will be tolerated at Camp Long Haul. Additionally, competition and comparison are dubious depending on the circumstances. If you’re engaging in them to shame yourself, please know that being an asshole to yourself is also discouraged.

4. No unsolicited advice. This is a place to be in community and have fun, not to tell people what they should or shouldn’t do based on what you do or have done or didn’t do or whatever.

5. Respect other people’s capacities, capabilities, and believe their experiences. Remember that we are dealing with dynamic illnesses and disabilities, and we don’t all know each other’s list of diagnoses. I also will likely shun you if you ever say the words, “Well, that’s not my experience!” to another camper.

This week’s theme is Welcome & Orientation, which is basically what it sounds like. Today, I’ve posted to Camp Square (my Instagram) so folks there can get the Camp Handbook in case they didn’t head over here when I posted it the other day. To make reading this separate post worth your while, here’s an outline of what you can expect for Welcome & Orientation week:

Monday, June 1

• I’ve posted the flag raising on Camp Square.

• Go to my Instagram stories to submit any remaining questions. I’ll use that to create a FAQ highlight reel.

• HAPPY PRIDE, MY ANGELS. I LOVE YOU!

Tuesday, June 2

• Choose your Camp Cabin from a selection of 6 different names suggested by campers. You’ll do this in my Insta stories, or in the comments on a post here on the Camp Bulletin Board. I have cabin-themed images you can share, too, thanks to my social media intern this summer! (my kid)

Wednesday, June 3

• It’s our first activity day, and we’ll be making a camp name badge! Add your cabin name, and decorate as you wish. Create it online, or get out your glue sticks and pipe cleaners. Write it on a piece of paper. Say it out loud. Say it in your head. Whatever works for your spoons that day. Once you’ve made your badge, share it with the hashtag #camplonghaul, and I’ll share it and create another highlight. I can’t wait to see these!

Thursday, June 4

• Remember how, when you were a kid, you’d see someone wearing a shirt that was your favorite color, or you’d be in a pool and meet another kid and be like, “Do you like to swim?” and they’d say YES, and you’d be like ME TOO OMG WILL YOU BE MY FRIEND? I am granting every camper that freedom this summer. If there’s someone you’ve wanted to be friends with, I’d like to encourage you to just message them and say hi.

Friday, June 5

• We’ll be having our first Campfire Chat on Friday, June 5, at 6 pm Eastern. It will be held on Instagram Live. These will never last more than 30 mins, and I will record them and share them somewhere, somehow. I have no plan yet.

If you’re interested in participating in Camp Long Haul by joining a weekly Campfire Chat, leading an activity or workshop, helping with stuff in the background, or literally anything, please email me at afriendforthelonghaul@gmail.com.

Be sure to check today’s IG post for your first camp badge!

Dear Campers,

The tent is set up in my loft upstairs, the campfire is lit thanks to a YouTube video, and the counselors are preparing. Camp Long Haul officially kicks off on June 1st, and I look forward to welcoming you to this virtual summer camp for spoonies!

Whether you’re joining from your bed, couch, favorite comfy chair, the bath (careful), the kitchen floor, or your doctor’s waiting room, here is your official welcome guide to Camp Long Haul. It explains how camp will work, how to navigate the platforms, and how to protect your energy.

First, the FAQs

1. Is there any cost involved? No. I’m literally just posting things, and you can engage or not as you want to or are able to. If you do want to support my work on camp or the podcast, you can listen to it wherever you get your podcasts, share the episodes that you enjoy, follow and subscribe, and engage with my posts on social media. That’s the most important thing! Other ways to support me are to follow this Substack, pledge a subscription if you’re so inclined, or have a look at the gift registry I set up to help my family have some fun and attempt to avoid autistic burnout during the summer break.

2. Do I have to register somewhere? Nope. You shouldn’t even have to subscribe to this Substack to read it, and I promise I won’t get you 3 weeks in and then suddenly switch all the camp posts to paid.

3. Do I have to listen to the podcast to participate? Again, no. I host a podcast, record it, edit it, promote it and do all the social media stuff and I can’t even listen to podcasts myself because of cognitive impacts post-Covid. I get it. So no, there might be bonus podcast content, but you’re not required to consume anything anywhere.

4. Who are you? I’m Beth! I got Covid on April Fools Day, 2020 and I’m the host of A Friend for the Long Haul - A Long Covid Podcast. I like to drink more than one beverage at a time, and I call that the flotilla.

How the Virtual Campground Will Work

Social media algos are chaos, and my brain can’t always keep up. To make camp as stress-free as possible, I’m separating the campground into three clear areas:

1. The Camp Bulletin Board (Substack): This is the central hub. Every Monday morning, a new post will go live on my Substack with the week’s theme, schedule, and activities. If you miss a week or have a crash or flare, don’t worry. Everything will be archived on the blog in chronological order.

2. The Camp Square (Instagram): This is where I, your camp director, will hang out most of the time. I’ll do mini versions of the Bulletin Board Substack posts on the grid and will include stories with questions and other interactive bits and pieces.

3. The Amphitheater (TikTok): A totally optional space for quick video snippets and camp vibes, mostly for folks who aren’t on Instagram. TikTok content will basically just be what’s posted on the Camp Square (Instagram Grid).

The 8 Week Summer Schedule

The next 8 weeks of chill opportunities for connection will be split into themes:

• Week 1: Welcome & Orientation (what it sounds like)

• Week 2: The Craft Shack (some low-key craft and making opportunities, as well as input from some cool guest “Camp Counselors.”)

• Week 3: The Great Accessible Outdoors (shifting the definition of “nature” for those of us with batteries that don’t charge like everyone else’s)

• Week 4: Campfire Stories & Storytelling (opportunities to hear from community storytellers, writing prompts, a call-back to week 2’s Craft Shack, discussion of books, movies, songs, and stories, ghost stories!)

• Week 5: Field Day (accessible virtual games, sensory scavenger hunts, and more)

• Week 6: The Camp Long Haul Talent Show (spotlighting unconventional talents that fit spoonie life, talent show and tell)

• Week 7: The Friends We Made Along the Way (mutual aid opportunities, gratitude letters instead of letters home, amplifying voices, celebrating others)

• Week 8: Closing Ceremony (Wrapping up camp)

Camp Cadence: When to Tune In

So that none of us are using precious cognitive energy looking for posts, I’m going to follow a strict three-day posting schedule each week.

1. Monday is “Flag Raising” day: An Instagram grid post will go out first thing every Monday morning to announce the week’s theme. A corresponding Substack post will also go out, so you can check the Camp Bulletin Board for the week’s setup.

2. Wednesday is “Activity Day”: This is when our weekly activity will drop on the Camp Square (Insta) and Substack.

3. Friday is the “Campfire Chat”: We’ll close out the week together with an Instagram live every Friday at 6 pm Eastern/5 pm Central/4 pm Mountain/3 pm Pacific. Sorry, this time is not negotiable because Mother Camp Director has no other option. Join live for a cozy, low pressure 30 minute long (max - my spoons!) recap of the week, going over what was shared and made during the week. Special guests will likely attend.

I’ve picked Insta live for the Campfire Chat because it’s the lowest pressure option. There’s no need to worry about passwords, registering, being seen on camera, or leaving the “room” if you get tired. You can just hang out. Instagram also supports live captions for broadcasts, and it will instantly notify anyone following me when I go live. That means I don’t have to use cognitive spoons to stay on top of reminders and emails, and you get notified pretty easily in case it slips your mind. It’s also a breeze to have other people join as guest speakers. I can save Instagram Live broadcasts to use later, so they will be recorded and may end up in podcast episodes. I will also upload them to YouTube and link to them on the Substack Bulletin Board.

Your Low Spoon Packing List

You won’t need a heavy backpack or a trunk for Camp Long Haul, oh no! Before June 1st, gather these essentials:

• Your favorite pillows, Squishmallows, and blankies

• A giant water bottle, electrolytes, and friendly snacks

• Extra long phone chargers so your phone battery doesn’t poop out and you can stay cozy

Camp Rules & Energy Boundaries

Camp Long Haul is built entirely around pacing, rest, and accessibility. The Golden Rules are a bit different from standard camps.

1. Participation is optional. Laying down is always encouraged. There are no prizes for pushing through. Disappearing and returning without explanation is encouraged.

2. REST IS CAMP PARTICIPATION. There is no attendance tracking, or even registration. If you intend to participate and rest instead, you’ve earned a Rest Badge for the week. Look at you, you are an overachiever now.

3. Don’t be an asshole, please. No racism, sexism, homophobia, transphobia, ableism, body shaming, or general dipshittery will be tolerated at Camp Long Haul. Additionally, competition and comparison are dubious depending on the circumstances. If you’re engaging in them to shame yourself, please know that being an asshole to yourself is also discouraged.

4. No unsolicited advice. This is a place to be in community and have fun, not to tell people what they should or shouldn’t do based on what you do or have done or didn’t do or whatever.

5. Respect other people’s capacities, capabilities, and believe their experiences. Remember that we are dealing with dynamic illnesses and disabilities, and we don’t all know each other’s list of diagnoses. I also will likely shun you if you ever say the words, “Well, that’s not my experience!” to another camper.

Getting Help

If you have tech questions, need help, or want to chat, please use the comment sections on Substack posts or email afriendforthelonghaul@gmail.com. The Camp Director’s social media DMs are a murky pond full of that blue-green algae that’s a neurotoxin to dogs (I have a non-impact acquired TBI from Covid neuroinflammation, short-term memory loss, and AuDHD) it’s difficult for me to keep up due to my own cognitive impacts and real-life responsibilities. I’m also terrible at setting boundaries for myself and will answer DMs even if I am in a flare, or into the wee hours of the morning when I should be sleeping, so this is really a boundary I’m setting as self-care.

If you are someone who is looking for more folks to chat with who would like to volunteer to be a Camp Buddy - someone who has the capacity to offer informal chit chat more freely, please email me.

Pre-Camp Activity: Where are You Camping From?

While Camp Long Haul takes place in our cozy virtual spaces, we are all rooted in physical places. As we prepare for camp, I want to take time to honor the deep history of all the places we’re joining from. Before our official June 1st flag raising, I want to acknowledge that we are on lands that were stewarded and governed by Indigenous peoples long before colonization. Take a moment to use a site like https://www.whose.land/en/ or https://native-land.ca/ to see whose land you’re on. Name them by sharing in a post or your stories and tag @afriendforthelonghaulpodcast or use the hashtag #camplonghaul. Acknowledgment is a simple, meaningful way to show respect and take steps toward recognizing the stories and practices that honor Indigenous people’s history and culture. For a helpful guide on land acknowledgment, you can visit the U.S. Department of Arts and Culture’s Honor Native Land Guide. I’ll be camping from my home in northern Colorado, on the traditional lands of the Cheyenne, Arapahoe, and Ute Nations.

Thank you to everyone who has expressed their interest in this virtual camp. I am really touched by it. Please be gentle with me! I’ve never done anything like this before, and my own disabilities are dynamic, too. But I’m really looking forward to getting to know all of you.

See you at camp!

Beth
Director, Camp Long Haul
Presented by A Friend for the Long Haul - A Long Covid Podcast
A Low Budget/High Love Production

There’s a new 20-minute episode of A Friend for the Long Haul out now, wherever you get your pods (and on YouTube), explaining the lore (whim) of Camp Long Haul, and the plan (lol) for it. What is Camp Long Haul? I’m glad you asked!

Last week, I asked for help on Instagram stories because school break started yesterday. While I’ve shared some behind-the-scenes of my life, we only see about 5% of each other’s lives. I’m a disabled long hauler with a disabled partner and four disabled kids. I work full time, run a podcast, and without a traditional “village,” summers are tough. They’re no fun, never have been. In the last 1.5 months, four of us received new or additional neurodivergence diagnoses. Yesterday, we got a potentially scary diagnosis for our kiddo, who is already facing a lot. Anyway, I posted and said summer camp at home was starting, and I was like…crap. That gives me an idea. Within 10 minutes, I posted this:

Later today, I’ll be posting again - two in one day?! Omg! You’ll be getting a letter from the camp director about arrivals. :)

Megan was my second podcast guest when I started doing this in 2024. I’m pretty sure she was the first long hauler I ever gave my phone number to. And now she’s back, to give us an update about how she’s doing, and to talk about what it’s like to run a small business - in her case, Fancy Free Nursery in Tampa. She and her husband Robby are co-owners.

Listen to this episode on Apple Podcasts.

She’s seen improvements, even though she doesn’t like the word “recovered,” because nothing will ever really be 100% again. But, she’s ok. And she even said, “I’m ok with being ok.” She knows 2020 Megan would probably cry to hear 2026 Megan say that. I'm not going to transcribe it here. But at some point Megan describes what it felt like to have long Covid when people simply don’t believe it is real and she uses a broken leg as the analogy, and she asks the question "who'd your leg vote for?"

I need you to go listen to that part. (Link to episode on Spotify)

Megan and I have texted nearly every day since early 2021. We have not met in person. We came close once, but her son had something, he tested negative, she still didn’t come because she didn’t want to make me sick. That’s what it looks like when someone actually respects your situation. This is apparently the episode where I just lavish her with love. I’m not sorry about it.

So check out this part 1 of 2. Episodes will now be split up into shorter chunks because it’s easier for everyone’s brains, and folks want to listen but a whole hour or longer is a lot for me too. Next week, Megan answers listener questions about low spoon houseplants.

Part 2 : Low-Spoon Houseplants for Chronic Illness will be out on May 18th. We talk snake plants, ZZ plants, pothos propagation, and why your Calathea is not your fault.

Find Megan

@FancyFreeNursery on Instagram and FancyFreeNursery.com (proudly under construction)

A Friend for the Long Haul is a one-woman disabled-operated podcast in Season 4. If this post or episode resonates, please share it!

You can text or leave VMs on the Long Haul Line at 720-432-9368

Email me at afriendforthelonghaul@gmail.com

If you would like to be on the show, or to suggest a guest, use this form.

Thank you!

Twelve years ago today, we were home, fresh off a honeymoon to the Amalfi Coast. My husband was planting tomatoes in containers on the front porch, while my daughter watched him through the window.

My first miscarriage started the night before our flight to Italy. I went to the ER early in the morning.

“I would recommend that you not travel,” the doctor told me. “Miscarriages can get unpredictable real fast. I’d hate for you to hemorrhage at 30,000 feet.”

She took a beat.

“Or, worse.”

But we had to make a stop on the way. I got divorced about 18 months before this, and it was my daughter’s first visitation with her dad in England. We were dropping her off at Heathrow, staying the night in London, and heading to Naples the next day. I couldn’t NOT go.

I bought some pads on the way to the airport, took some ibuprofen, and spent most of the flight in the bathroom. I cried when I considered that our baby could end up in blue ice somewhere over Newfoundland.

We landed, did the handoff, got some chips, flew to Italy, bussed to Sorrento, and hiked the high trail portion of the Path of the Gods. It’s just over six miles along the cliffsides to Nocelle from Bomerano. I’d stop and hide behind trees and near waterfalls to deal with the bleeding every 30-45 minutes, telling my husband I was fine. This was normal.

Reader, it was not normal. I knew that.

We carried on, hiking the 1700 steps down to Positano and sea level. Had a good laugh at an Italian man in a convertible who stopped traffic in the middle of town to yell, “Hey! Does anybody know the way to Positano?!” at the tourists. We had some pizza, a glass of wine, and I changed again and again. We climbed the 1700 steps back up to our hotel, and then the additional 200 steep steps to reach the front door, where we were greeted with sparkling water and Castelvetrano olives.

I really needed that salt.

Nine years ago, I was posting videos of the baby with a bunny filter while we waited for biscuits and hash brown casserole at Cracker Barrel. He wouldn’t stop gummy kissing his big sister.

Six years ago, I shared a post from Dolly Parton about her friend, a doctor and researcher at Vanderbilt. He was making “exciting advancements” in researching a coronavirus cure, and she donated $1 million to support the research and encourage more people to contribute.

My caption simply read, “Queen.”

A few hours later, I made a post about a food pantry and thrift store in town that were offering boxes of free food to anyone in need. I explained how to donate.

My daughter and I started a new “mother-daughter” activity during quarantine. Since it was spring in Austin and warm but not molten lava hot, I’d taken up jogging again. I always wanted to be a runner, but I honestly hated it. I knew I was “double-jointed” and typically ended up with some kind of injury, usually a rolled ankle or plantar fasciitis. But I was in better shape than ever, really taking care of myself for a good couple of years because of the subsequent violent pregnancy losses I’d been through - one leading to a ruptured fallopian tube and emergency surgery after everyone realized I’d been bleeding internally for 4 days.

I kept working.
Driving.
Commuting 2.5-3 hours a day.
The pain was so unbearable at times that I went from crying to mooing.
I kept almost fainting, but not quite.

“It’s to be expected,” I told everyone.

It wasn’t.

But six years ago, I was back up to running 5k three times a week. I was a little sore, but it sure felt good. I was exhausted, but for the previous 2 weeks, since the shutdown started, I had been working 12-16-hour days. I was training an entire department, plus 30 professors, on working remotely and teaching via Zoom and the learning management system. All classes had switched to remote. I was converting all of their course content for them. Most people had no experience teaching in that way. I ended up winning the President’s Exemplary Service Award for my work.

Later in the afternoon, I decided to clean out one of the closets to make room for all the paper towels, toilet paper, and diapers we had collected, seemingly for all four kids to use to build forts. I realized I was out of breath. I said, “Damn, I’m so out of shape that I’m winded moving paper towels around.” My first inclination is always self-criticism. Forget about the fact that I ran 3 miles that morning, nbd.

I coughed a few hours later. It sounded weird. My husband was working at a hospital. He had helped reroute the entire network to accommodate rooms for Covid patients. He built stands for the newly acquired iPads that patients used to speak with family members who couldn’t visit them, to say goodbye to the family who couldn’t hold their hands, or to wave goodbye via FaceTime one last time before intubation.

“I’ve heard that cough,” he said. “I don’t like the sound of that.”
“Wouldn’t it be fucking hilarious if I ended up with Covid?”

March 12, 2020 was a Thursday, the next-to-last day I was in the office. I posted:

“What do we think is more likely? 1. I end up getting coronavirus, or 2. I fall down the stairs at work because I have new varifocals and I can’t see how to step down, but I won’t use the handrail because I’m afraid of catching coronavirus from touching it?”

The cough came and went, as did the breathlessness. I already knew I had POTS, but it was much harder to control. My usually low body temperature of 95.9-96.4 was elevated to a normal 98.6. I was exhausted and couldn’t sleep.

“At least work has calmed down.”
”It’s normal to be exhausted after something like that.”
”The world is a mess, and we’re stuck inside homeschooling. Of course everyone feels like shit.”
”It’s probably just that sinus infection I had in March still lingering.”

By April 23rd, I was running at 99.9 constantly. I say running, but that had stopped. I’d tried once to make it to the end of the road and coughed until I vomited.

I finally called my doctor’s office and was told that I was not old enough to have Covid. They said they couldn’t waste a test on me because someone else would need it more. But then they heard me cough, and they coordinated a test for me. At that time, test centers were set up in the weirdest places. I drove myself down to an abandoned Home Depot, and it looked like that scene from ET when they’ve come to do all the tests on him. A stranger in a hazmat suit had me roll down my window, and she asked me to sit on my hands as she stuck the swab up my nose.

“My friend got punched in the face by a man she was testing the other day. He didn’t mean it, people just aren’t used to getting their brains swabbed.”

Five days passed, and I still hadn’t had my result. At this point, I was working from bed and could hardly breathe. It felt like there was an elephant on my chest, and my body didn’t feel like mine anymore. It felt like it had been taken over by something alien. I just kept telling myself that no news must be good news. I hadn’t sequestered myself from my family because the health department was so sure I didn’t have Covid that they said there was no need. No one else had any symptoms, anyway, and we were 3 weeks into this.

Then I finally got a phone call. A man checked some personal information with me and said, “So, when someone tests positive for coronavirus, there’s a series of steps we have to take for contact tracing and monitoring your illness.” You know when you’re about to witness a car crash, or you see a kid is about to get hurt, and time slows down? That’s what happened. I sat down on the bed and said, “Wait, I tested positive?”

“Yes, did the county not call you?”

No, no, sir. No one called me. He said they’d had the results for 3 days and were supposed to have called me the day they got the info.

I remember feeling with my entire being that this meant I was going to die. That’s what we knew at the time. Covid was killing people at such a rate that there were refrigerated trucks outside hospitals to hold the bodies because morgues were full. I remember thinking I would never leave my bedroom again. Well, not consciously.

What I don’t remember is the rest of the conversation, or telling my husband, or telling my boss, or telling the kids. I do have entire Instagram highlights full of shitposts, memes, and delirious rants. I didn’t sleep, I couldn’t breathe, and I couldn’t swallow. I heard things that weren’t there and I could only smell smoke. I went to the ER once. My oxygen was low and I hadn’t been able to swallow my own spit for 18 hours. I was dehydrated. Again, doctors and nurses in hazmat gear said things like, “We can’t come in and out of the room because we can’t waste the PPE, so you’ll only have one nurse come in one more time.” They didn’t give me any oxygen, and they charged me for a bag of saline that no one hooked me up to. They wouldn’t touch me. I was given a small Dixie cup full of lidocaine to drink to “soothe my throat,” and they handed it to me using one of those plastic gripper things.

Then they told me not to come back unless I REALLY couldn’t breathe, and WHEN that happened, I should call for an ambulance. Maybe I could pick up some throat lozenges on the way home, but:

“It was pretty reckless of you to expose your family in the car.”

Five years ago, I posted a Clickhole meme of a jack-o-lantern. It said, “Today is Halloween ;) Share if you agree.”

“I agree”

A few hours later, I shared a picture of a small portion of a plain boiled potato with a spoon and a white plate.

“Today’s the 1 year anniversary of the onset of my symptoms. I made a meme to commemorate and make a joke of it, but I’m going to get vulnerable here - this has been the hardest year of my life. It feels like the Artist Formerly Known as Beth has been replaced with somebody else. I know everyone has Covid fatigue. But it consumes every moment of every day for me. There HAVE been improvements - my cognition is probably 60% of the way back. I’ve driven a few times lately. The fatigue doesn’t feel, as I read recently, like I’ve been “hit by a truck and then chloroformed.” I just feel like I was hit by a truck. But since yesterday - I can’t eat without massive reactions leading to asthma attacks. So as I sit here waiting to see if my body sees the plain potato I just ate as a threat, I just - y’all, forgive me if I am just not “me.” I miss me. The scariest part is not having the science to know how much of me I’ll get back. But I sure am glad to be here to bitch about it.”

Reader, my body perceived the potato as a threat. And things got much, much worse for a long time after that.

Four years ago today, I posted this:

I have not posted on Facebook on this day again.

FIRST UP: I just saw an email saying that Claire of has officially launched her new endeavor, Musings of a Black Disabled Elder. I have been excited about this for a real long time, and I’m trilled to see this new addition to the blogosphere. I clicked through and saw a question, “In the midst of chaos, what’s your daily healing routine?” Ummm. It is very clear that I do not have one of those. That’s probably why I ended up crying on the internet and then doing an 19 slide post about burnout.

These two are truly wonderful, intentional humans, and I’m going to be chatting with each one independently about their latest creative works. You should go subscribe.

Shameless plug, here’s some episodes of A Friend For the Long Haul featuring Claire and Amaranthia:

and

Next week, I am recording an episode of A Friend for the Long Haul - A Long Covid Podcast with Dr. Julia Moore Vogel and Dr. Wes Ely. Dr. Moore Vogel has been on the podcast before, where she told us all about the Long COVID Treatment Trial (LoCITT) program.

I’m very lucky to say that she has also turned into one of my Pocket Friends - a friend who lives in my phone, in my pocket. She introduced me to Dr. Ely, and I am absolutely thrilled to be hosting both of them for a conversation. We’re planning to discuss how their different lived experiences in the Long Covid realm (Dr. Julia both studying the illness and being a patient, Dr. Ely’s history as an ICU doctor who studied and revolutionized Post Intensive Care Syndrome protocols and his mission to prevent patients from being harmed by care systems and the tech that keeps them alive.)

Dr. Ely has a book that I’m currently listening to, called Every Deep-Drawn Breath. I’m in awe of him! And as many of you know, I’ve dealt with a lot of cognitive impacts because of LC and neuroinflammation - his article from 2023 called “The Haunting Brain Science of Long Covid” is not for the faint of heart:

“Perhaps the most harrowing thing I have done in 30 years as a physician-scientist has been to ask family members I’d never met, often in the middle of the night via telephone during the height of the Covid surges, if I and my colleagues could study their loved one’s brain. In a study we conducted of 20 of these priceless brain donations, we found brain swelling due to decreased blood flow and heightened activity in microglial cells, the so-called white matter in brains that support the neurons that transmit thoughts and help store information. We saw this even in young previously healthy individuals.”

I’m so grateful to get to have a conversation with these two!

Chimére from has a new post up, and she is asking for feedback. She has a presentation coming up at her alma mater, Morgan State University. It’s titled: “Dismissed to Diagnosed: How Storytelling Promotes Agency and Advocacy in Black American Healthcare.” She says:

“I am doing the fastest research for my science abstract presentation ever! And I need your help. My presentation will be a bit unique as it is a narrative analysis. I will be sharing written, video, and storytelling experiential research more than charts and graphs. You know I never do anything traditionally. Ha!

If you’re Black, has my Long Covid story and activism inspired you to pursue any part or next steps of your healthcare goals?

If so, could you tell me how?”

You can click through to that post and give feedback in the comments.

From the Washington Post: “13 Surprising Ways GLP-1s may Benefit the Body, According to Science” ties into this nicely.

“Beyond metabolism, the medications appear to influence inflammation, the immune system and brain function, revealing how interconnected these systems may be.”

I’ve been on Mounjaro (tirzepatide, same as the Scripps trial) since January 2025, and it’s made a huge difference not only to my pain levels, but to my nervous system.

I’m spiraling about how current events are going to impact food supply in the summer and fall, so your girl is starting a composting journey. I’ll keep you abreast. I really want to grow foods that are easy to re-grow from themselves - both out of need, and out of how cool that is to share with the kids.

Here’s a video from the La Jolla Institute of Immunology called “The Pandemic We Didn’t See: What We Actually Know About Long COVID & Post-Viral Disease.”

Horticultural Westerns

And finally, a new episode of the podcast will be out on Monday, featuring Olivia Belknap. She’s just as lovely as you would expect! You should follow her on Instagram, and if you listen to the pod, follow/subscribe on your favorite platform. Sharing and reviewing helps out a lot, too. Thank you!

In addition to being my common-law Internet wife, Kathleen is a health systems researcher with expertise on patient-physician relationships; systems thinking; patient advocacy; and dignity in healthcare. She specializes in the translation of evidence, high-level policies, and systems decisions at the point of care. Ms. Banks has worked with policymakers and officials from the grassroots to the global level, and uses that experience to bridge understanding on how to design and implement effective programs and policies. She is currently finishing her Doctor of Public Health degree at Boston University School of Public Health. Her research focuses on access to patient-centered healthcare for people living with Long COVID, and she has been a member of the Patient-Led Research Collaborative since 2024.

Suffice it to say, she knows what she’s talking about.

Then, I put together an episode based solely on input from listeners, about what our community means to us. It’s called The Friends who Show Up: Love Letters to the Long Covid Community.

Contributors include Dr. Julia Moore Vogel, pacing buddy extraordinaire Katrina Dreamer, Nina Storey, Katherine Fox, and members of the Covid Longhaulers podcast Discord, (Thank you to Emerson, Jessie, Mika, Vic, Kai, Robyn, Joyce, Jojo, and more) along with a handful of anonymous long haulers who remind us that sometimes the people who understand us most are the ones whose legs we’ve never seen.

This episode explores what it looks like when community shows up: friends attending doctor’s appointments to combat medical gaslighting, online friends building their own Covid-conscious community across Switzerland, a rental cat named Katja who has thoughts about pacing, and two little boys - Ellis and Holden - who became besties on PlayStation because their moms both have Long Covid and, as Ellis put it, “we understand each other.”

The third new episode is with Jessie and Emerson, the hosts of the ! It’s called We all Need a Witness: A Conversation with the Covid Longhaulers Podcast.

If you’re not sick of the sound of my voice yet, you can also tune in to hear me on their Long Covid Awareness Month episode!

I love a good collab!

Because I’m trying to preserve spoons, I’d like to invite you to check out my post on Instagram, where I overshare about the fact that it’s taken me 6 years of being sick to recognize that I’m burnt out.

You can listen to A Friend for the Long Haul - A Long Covid Podcast wherever you get your pods. I have an amazing lineup of guests for this season, and I’m so grateful!

Deadline: 1st March 2026

The podcast is returning with a focus on the quiet, often invisible work of attempting to stay partially upright and connected with bodies that change and systems that fail us. We’ll explore friendship, relationships, community care, work, and how, as a community, we’ve been forced to adapt in ways we shouldn’t have had to. This includes how we’ve come to rely on each other, often across great distances, for survival.

But don’t worry, there will still be dark humor as a coping mechanism. I’m also introducing some new segments, including:

• The Long Haul Line, a new Google Voice number that you’ll be able to use to send texts or voicemails

• Friendship & Care stories, inviting listeners to share how you’ve sustained relationships across distance, illness, or changed capacity - or where things have fractured

• Resources & tool sharing, where folks can share what’s genuinely helped them, like products, practices, accommodations.

• Artist and creator spotlights - I’d love for these to be submitted by the community, and I already try to do this, but I really want to have a more solid focus on featuring chronically ill and disabled artists

I have a few more ideas, but we’ll see how the spoons go. :) I can’t wait to share what episode 1 will be about! I’ll be posting about that on Wednesday, Feb 11th. It’ll include a very low-spoon call to action, but I think you’ll like it.

Thank you all for your support! April 1st will mark my 6th long covid anniversary, and the podcast’s 2nd anniversary. Be sure to subscribe on your favorite platform, it really helps me get the word out.

Apple Podcasts:

Spotify:

>

I know we’re getting down to the wire, but these are things that most of these folks would need or use at any time.

Thank you, to infinity and beyond, to everyone who has shared and contributed. You’re actual angels.

Happy holidays, everyone!