chronicallycouchbound

[chronicallycouchbound]

Dear community,

Sometime in March(ish) of 2024, on a sunny day and the snow on the ground melted between storms, I went for a long walk. I have trouble walking safely in all the snow and ice, and I can’t walk far without fainting in the heat, so I have a limited part of the year where I can comfortably go for walks, and even fewer days where my pain, fatigue, fainting, dislocations, and other symptoms are manageable to the point of being able to handle a walk. So when I walk, I make the most of it. I don’t mind needing to rest for a few days in bed afterwards if it means I get to be out in nature and feel the sun on my face. And this day in the late winter in New England was perfect for it. 

I got inside, now overheating from my layers and feeling dizzy, I laid on the ground – All normal for me after a walk. My hips were killing me, also normal for me. But this time, my lower back was aching deeply, which was a bit odd for me. I went and laid in bed and after a few hours the pain subsided. The next time I went for a walk it happened again. And again. I started using a heating pad for a little bit after my walks. 

But then my back started having pain while still walking, not just after. And the pain was more painful, not just an ache or soreness, it became deep twisting, stabbing pain. And then the pain started happening while I was just standing. I would have to rest for days after walking, laying flat on a hot pad. Twisting to the side, bending forward, shiting even slightly could trigger it. 

Soon it became just from sitting upright, even with my custom fancy wheelchair cushion. I started having shooting pain down my legs, losing feeling at times, tingling and zapping pain in them at others. A half hour of sitting in my chair, even with a hot pad, was far too much for me and meant days of recovery. I stopped being able to focus on TV shows and movies, I was slow to respond from dissociation, I couldn’t form thoughts outside of pain. 

After a couple months, no amount of laying flat (even with my hot pad genuinely on 24/7) reduced the pain at all. Every movement was excruciating, I could hardly sleep from the pain. I would spend hours every night just sobbing and trying not to wake my partner. I was constantly in pain. I would still try to go to events and have to leave early from my pain and couldn’t participate because of my pain. I had to leave my niece’s first birthday early because of it. No medications took the edge off, I can’t have cannabis, but sometimes alcohol helped. I saved it for special occasions. I couldn’t be conversational or even gentle, I could truly only manage short responses through clenched teeth. I missed just talking with people, watching a good show, playing a cozy game. I spent 23 hours a day horizontal on a hot pad, sometimes playing shows or music in the background. I hated every minute of my life, I stopped doing things I loved, things I needed to, things I wanted to. 

As someone who’s lived with chronic pain my entire life, and has dealt with many painful conditions (torn achilles multiple times, ruptured bursae, been stabbed, had my toenail surgically removed and chemically cauterized with no anesthesia, Traumatic Brain Injury and countless concussions, trigeminal neuralgia, dislocations and subluxations almost constantly in all my joints, I could keep listing, you get the idea), I accepted that this was just my life now. So many of my conditions have no treatments and no cures. I can’t have cannabis, opioids, TENS units, hot baths, and am completely resistant to local anesthetics, even more obscure treatments like capsaicin cream or a wide variety of herbal remedies. I’m intimately acquainted with pain. 

I saw my PCP and they did an MRI. At first, they said I had a tiny herniated disc at my L5/S1. Then they said I have an anatomical variation called lumbosacral transitional vertebra (LSTV) on the side opposite of the herniated disc. I was given NSAIDs (which did nothing) and referred to interventional pain management. My pain management team specializes in back pain, and they showed me the images of my spine and pointed to each issue and explained them, including some missed by the radiology department. They explained that I have L4 and L5 spondylolisthesis (same condition as Luigi Mangione, fun(?) fact), with my L5 being slid more out of place. I also have osteoarthritis/spondylosis of my entire lumbar spine. 

Pain management recommended a radiofrequency nerve ablation (RFA), but needed testing done first. They took long needles and put them directly into the sensory nerves in my spine in 6 locations, then injected them with a local anesthetic to block the nerves. It was 15 minutes of pure hell. I didn’t expect much to change from it. But after, for the first time in a year, for just a few hours, I had minimal pain. I made warbat, I teared up just sitting upright on the edge of my bed, smiling because I could do it. It felt like I came alive again. The diagnostic blocks had to be done twice for insurance, the second time I got less relief and I was nervous. Nerve ablations are a more serious intervention, and require having exhausted all prior solutions, but it’s where I was at.

The day finally came for my ablation. They were able to give me twilight anesthesia, I slept for hours and hours after. The first few days weren’t too bad, but then I was having some pain again and I was nervous it hadn't worked. The nerves can take a few weeks to heal, and sure enough, after about 3 weeks, my pain had significantly improved. 

It’s been about 6 weeks since my ablation, and I’m still learning my body’s limits again. I have been smiling with soreness in my feet at the end of the day, because I’ve been able to stand long enough to have foot pain before back pain. I’m able to be out of bed for PT sessions now. I’ve been walking again– something I’ve always loved to do for my mental health is go for long walks and sing with my full chest. I still have days and hours where I have to be in bed and resting. I’ve realized my cardiac conditions and symptoms are indeed still extremely present, I just haven't been physically able to do the things that aggravate them much till recently. I’ve been able to be more present in spaces. I’m able to practice more somatic exercises and be more in touch with my body (without dissociating or sobbing in pain). I’ve been able to focus on what people are saying and activities (as much as my ADHD allows). I’m able to notice other parts of my body do indeed hurt often. My back even when it hurts now is nowhere near a 10/10, and is manageable with 15 minutes on a hot pad (the recommended amount of time!)

The ablation isn’t a permanent fix, nerves heal, and most people need it repeated every 6 to 9 months, some much sooner, some years later. I’m crossing my fingers that my body’s perpetually and comically slow healing comes in clutch and my spinal nerves take their sweet time to do so. My medical team is still looking at my spinal issues and monitoring them as needed. 

The night before my ablation, Poe broke a glass vessel holding my lavender bundle that sat atop my kitchen cabinets and sent glass shards the size of glitter over almost my whole apartment’s hardwood floors. Specks were in my stovetop, counters, coated like snow over all the dirty and clean dishes. It took me hours to clean it, I was crying the whole time, taking breaks to just sob into the floor. I didn’t notice all the tiny cuts on my knees until the day after my ablation. That night I didn’t know how much longer I could do this, I genuinely couldn’t keep living at that pain level with no relief or breaks. 

I’m so grateful for my ablation, for having medical professionals who believed my pain, for my partner who literally carried me through these past couple years and has continuously cared for me gently, for my sister and friends who’ve taken care of me in a variety of ways, for my community always being understanding of my never ending flakiness and showing up for me even knowing I couldn’t do the same. I’m so excited to be here, to get back into things I love to do, to share it all with you all, to relearn my body’s needs and limits yet again, to always honor my pain in every form.  - L TLDR; My back was fucked, pain was crippling, got a procedure to manage pain, life is better now. still extremely disabled tho but vibin. Might be able to write more now!

[chronicallycouchbound]

so when straight people ask me why I say I’m “queer” or “gay” instead of sharing my actual identity as a panromantic demisexual non-binary sapphic queer I just tell them “ok look, when you’re talking to someone who isn’t local and they ask you where you’re from and you either say the name of the largest city nearby or ‘town name, suburb of large nearby city’ so they can get some geographical context of where you’re located right, bc they’re probably not going to know the name of the little town you actually live in.”

but if you’re talking to a local you can say the name of your actual town bc they have a greater chance of knowing where/what that is.

ok well when I’m talking to a straight person I start with queer bc chances are they aren’t as familiar with the context of all the little towns in that big queer city and need gps (gay positioning system) to find me.

if I’m talking to another queer person and I say I live in a suburb of gay city in a town called panromantic on the demisexual side of the tracks which is in the county of queer and I live off the intersection of non-binary and sapphic, they’d probably be able to find me with little to no problems, make sense?

[chronicallycouchbound]

Additionally, hostile architecture also discriminates against physically disabled people. Which is important context because a large proportion of the homeless community is also disabled.

Being a committed pedestrian in a major city will make you hyperaware of the ways urban areas will attempt to make themselves hostile to homeless people and the ways that these efforts also make life worse for everyone else. The needlessly narrow sidewalks, the uncomfortable and inconvenient seats at bus and train stops, the noise pollution from convenience stores piping loud music outside. It all sucks, it all has a negative impact on everyone simply trying to exist within a community, and it’s all in service of cruelly trying to drive a class of people from public view.

[chronicallycouchbound]

And a reminder that queer disabled people on disability benefits cannot get married without losing benefits— including health insurance, basic income, and housing. We do not have marriage equality.

im going crazy you have GOT to decouple romance/amatonormativity and marriage in your mind. you have GOT to understand that marriage is a legal document that protects you from exploitation especially if you are a woman or a stay-at-home anything. it is not some evil unique to heterosexual people. it is a legal document that says 'this is who i want in my hospital room when i die, this is who i want to have my stuff when i die, THIS PERSON OWES ME RECOMPENSE IF THEY KICK ME OUT OF THE HOUSE I LIVE IN"

You are not immune to being taken advantage of by your partner if you are queer. do not wind up homeless because your garbage live-ins name is on the lease and they decided to drop you like hot coals.

[chronicallycouchbound]

I encourage everyone who reads this post to learn what “chronically homeless” means (the legal definition can be found on the Housing and Urban Development website) and why these things are inseparable in depth

you can't be a disabled ally without also supporting homeless people and addicts like it's just not possible

[chronicallycouchbound]

Taking care of the disabled and injured is human nature actually. We have evidence of our ancestors caring for folks with disabilities. We're a cooperative species that takes care of their own. If our starving, weary, and hunted ancestors could care for the disabled members of their tribe, in this era of modern medicine and abundant resources we absolutely can afford to do the same.

[chronicallycouchbound]

I don't see this mentioned here, things are getting worse and worse for us queers in Hungary

[chronicallycouchbound]

didnt expect to be talking abt starbucks so much after i quit but it just keeps getting worse

8 human trafficking survivors are suing Starbucks, exposing years of forced labor and child labor. the article starts with the story of a man who was enslaved at age 16 and was just rescued last year. if nothing else has convinced you to boycott, please let this sway you...

it also says the NGO CoffeeWatch is filing a complaint with US Customs and Border Protection attempting to block these corporations from importing coffees produced wholly or in part by slave labor in Brazil.

but this isn't unique to Starbucks, this is the unspoken truth of many of our goods in the west, relying on the exploitation of people in the global south. i pray all the survivors secure a massive payout, but still.. i cant imagine anything would ever make up for this kind of treatment.

[chronicallycouchbound]

Can you hear us? Can you feel what we’re going through? Fear. Hunger. Death. A never-ending siege. The silence of the world hurts as much as the bombs.

We're crying out to your humanity—please don't look away. Speak about us. Stand with us. We're not okay. We're trying to survive.

This is not a nightmare. It's our reality.

Don't forget us. Do something—anything. Share. Donate. Repost. Help keep us alive. Every action counts. Every voice matters.

>> Our campaign is vetted by gazavetters list at (#291) Momen & his family

[chronicallycouchbound]

I do a LOT of harm reduction advocacy IRL, and before being bedridden primarily, I was going and distributing harm reduction supplies downtown weekly. I’m still closely involved and occasionally go to outreach.

There’s currently an HIV outbreak where I live, one of the biggest contributors to this is that our local queer community center lost a ton of funding, right as the administration switched. It hasn’t been able to readily offer harm reduction supplies such as condoms, and some of their programs are closed indefinitely, including the syringe exchange program.

I’ve talked with folks through outreach who are newly diagnosed with HIV, navigating through various antiviral medications, learning the new restrictions for their body, trying to figure out how to cover their treatment. It’s heartbreaking.

We need all the public health initiatives we can get. All of them

I NEED people to understand that condoms aren’t free because “MEN like to FUCK lol,” they’re free because thirteen thousand people die from AIDS every year in the US alone.

Stop framing free menstrual products as more essential than free condoms. They should BOTH be free.

[chronicallycouchbound]

For my workshop, I want to cover 3 main topics:

1. How disability justice intersects with climate justice (basically how we're like canaries in the coal mine, we're impacted long before nondisabled people)

2. How to make nature more accessible (thinking of including an activity for this part, maybe focusing on solutions for various terrain types? Maybe people can test drive a folding chair over gravel? Idk yet, open to ideas!)

3. How disability access in nature fosters disabled joy (and benefits everyone! Things like birdwatching while bedridden, and how trail accessibility ratings make life easier for everyone)

I also want to have action options for the end of the workshop so folks feel empowered to go out and make more spaces in nature accessible

I’m working on a workshop I’m centering around disability access in nature!

Please send me any and all ideas you have around this— especially accessible ways I can make the workshop interactive! It will likely also be primarily abled attendees also, but some folks are disabled. I’d love to highlight the joys of accessible spaces & ways in which disability and nature are connected.

Please share for reach!

[chronicallycouchbound]

I’m working on a workshop I’m centering around disability access in nature!

Please send me any and all ideas you have around this— especially accessible ways I can make the workshop interactive! It will likely also be primarily abled attendees also, but some folks are disabled. I’d love to highlight the joys of accessible spaces & ways in which disability and nature are connected.

Please share for reach!

[chronicallycouchbound]

Health PSA for fellow stimboard creators!!! Please NEVER tag flashing content with the photosensitive epilepsy tag, epilepsy, photosensitive, or anything related. You should tag it instead with: flash warning, flashing, cw flashing, tw flashing, flashing gif, flashing gifs etc.

Flash warning is the best tag to use in my opinion.

If you use the photosensitive epilepsy tag you are instead broadcasting your stimboards to people with photosensitive epilepsy. The very people you're trying to warn! This is extremely dangerous. Seizures can cause brain damage and death, and should be taken seriously.

I see too many flashing gifs in the photosensitive epilepsy tag and it's honestly terrible to see.

[chronicallycouchbound]

is there a housebound community out there? hopefully i wouldnt be intruding bc im not physically disabled but i dont go anywhere bc im at risk for deadly covid complications

unfortunately i don't know of anything but i haven't searched every platform. i would be really interested if someone knows of anything or makes something in the future! my fatigue etc is definitely to the point where i couldn't manage a server or something myself these days

i know back in 2018 (before i was homebound) @RebelWheelsNYC proposed #TheHomeBodiesCollective on twitter but i don't think it's been active in a while & it was never active on tumblr

ik i seek out posts from @energysavingselfcare (which last updated 2021) & @chronicallycouchbound, unfortunately some other folks i knew deactivated... i know it's not the same but you (or anybody homebound etc) are welcome to dm me to talk about stuff!

i talked about this before with respect to agoraphobia but i so strongly believe in a big-tent, spectrum, umbrella of homebound experiences & i would be thrilled to be in closer community with folks like you <3 you're not intruding, you belong in this conversation & i wish there were more spaces for both our experiences

[chronicallycouchbound]

Americans, did you know there were mass protests all across the country over Super Bowl weekend?

Coast-to-coast, from DC...

... to Portland

... from blue states

... to red states

And nary but *crickets* from the national media. The revolution is NOT being televised, it is being suppressed. 

Just remember, you are NOT alone. People ARE doing things. You will meet those people when YOU start doing things.

But we cannot rely on the courts alone. Trump is already defying numerous restraining orders, and the Executive branch controls the enforcement arm of federal law (U.S. Marshals Service).

When Trump inevitably refuses to comply with the courts and directs the DOJ/U.S. Marshals to stand down, effectively neutering the Judicial branch of the government, it will signal THE END OF U.S. DEMOCRACY.

Our only recourse will be to take to the streets. WE THE PEOPLE, need to demand rule of law by asserting our First Amendment right to assemble while we still have it.

Rise up against tyranny/oligarchy/white supremacy/you-name-it

JOIN THE REVOLUTION! National Day of Protest Presidents' Day | February 17, 2025

And pledge to join the General Strike.

[chronicallycouchbound]

from @.mprnews on Instagram.

Not sure how many of y'all saw this, but the combined misogyny-ableism-transphobia was off the charts. I am glad that he did get his top surgery, has support, and that its pursuing it's goals to advocate for other disabled + trans people.

[chronicallycouchbound]

The dawn of Newspeak is on the rise...

And you claim you are for "free speech"...

Just in case you don't want to read the article. These are the words Trump has forbidden:

activism

activists

advocacy

advocate

advocates

barrier

barriers

biased

biased toward

biases

biases towards

bipoc

black and latinx

community diversity

community equity

cultural differences

cultural heritage

culturally responsive

disabilities

disability

discriminated

discrimination

discriminatory

diverse backgrounds

diverse communities

diverse community

diverse group

diverse groups

diversified

diversify

diversifying

diversity and inclusion

diversity equity

enhance the diversity

enhancing diversity

equal opportunity

equality

equitable

equity

ethnicity

excluded

female

females

fostering inclusivity

gender

gender diversity

genders

hate speech

excluded

female

females

fostering inclusivity

gender

gender diversity

genders

hate speech

hispanic minority

historically

implicit bias

implicit biases

inclusion

inclusive

inclusiveness

inclusivity

increase diversity

increase the diversity

indigenous community

inequalities

inequality

inequitable

inequities

institutional

Igbt

marginalize

marginalized

minorities

minority

multicultural

polarization

political

prejudice

privileges

promoting diversity

race and ethnicity

racial

racial diversity

racial inequality

racial justice

racially

racism

sense of belonging

sexual preferences

social justice

sociocultural

socioeconomic

status

stereotypes

systemic

trauma

under appreciated

under represented

under served

underrepresentation

underrepresented

underserved

undervalued

victim

women

women and underrepresented

Don't believe me? Here's more about it.

Enjoy!