Journal of a neurodivergent NB queer. Writing from bed about life with FND, seizures, and fibroids. Expect deep thoughts, book talk, navigating medical systems, and a cat. Sharing the journey of being aroace, and polyamorous while finding happiness in a quiet, slow existence. I prefer no pronouns.
My blog is written from my bed, in the dark, on my phone.
Content includes: what it's actually like to be this disabled, feelings about feelings, opinions on books, medical bureaucracy, thoughts on queerness, life with my disabled caregiver, a cat, and the occasional āwhat is my body even doing?"
* my nesting partner (also disabled, also my caregiver)
* my very autistic cat š
Life moves slowly here. Pain is consistent. Beauty is valued and co-created.
Why this blog exists
I write to:
* track what life in this body actually looks like
* make sense of patterns over time
* leave a record for future me
* offer representation I rarely see all in one place
This blog holds:
disability + queerness + neurodivergence + trauma awareness + compassion + deep thoughts + big feels + a preference for (safe) vulnerability.
This is my life, as it is unfolding: mundane, heavy, funny, pleasurable, frustrating, meaningful.
What To Expect
š Structure
Most posts include:
* title
* date
* content note
* keep reading break
* the journal entry
* spoiler alerts
* thoughtful tags
Predictability helps my brain relax.
āæ Accessibility
* text-only posts (occasional emojis)
* readable fonts
* low-stim design
* consistent formatting
This space is built for screen readers, light-sensitive eyes, foggy brains, and anyone who prefers fewer sensory demands, like I do.
ā ļø Content notes
Content notes appear at the top of relevant posts.
If a post touches:
* heavy emotional content
* medical stuff
* sexuality (never explicit)
I will warn you. No triggering content will be above the ākeep readingā button. Your consent and wellbeing matter.
š·ļø Tags
My tags are intentional and specific.
Theyāre like a quick preview so you can decide which post youāre in the mood for.
š Pace & tone
Each post stands alone, they also build on each other when read in sequence.
Posts are shared daily but scheduled in advance to support my unpredictable body. Some entries are long reflections, others are small moments. All of them are real-time honesty.
Connection
* curiosity is welcome
* thoughtful engagement is appreciated
* questions asked with care tend to land well
Iām going to sleep now, maybeā¦āØ- The Slothful Synapse
Content Note: Mentions of depression, meltdown, SI, and the word āeroticismā.
I'm stopping these journal entries here to focus more deeply on my health and wellbeing.
This started as a record of what life in my body currently looks like: multiply disabled, nonbinary, polyamorous, and bed bound, with a disabled, loving, and dedicated nesting partner/caregiver. As a documentation of how I move through my days in a darkened room, navigating pain, fog, medical systems, long stretches of waiting, and oh so many thoughts on romance. Sharing the mundane, painful, curious, beautiful, exhausting, joyful, confusing, up ending, boringā¦ all of it. And as a map to remember how Iāve ventured through this tangled forest while holding on to some semblance of my sanity.
Looking back, I remember pleasant moments, like finally getting our new passports. Helping my nesting partner find the perfect new desk. My nesting partnerās brother connecting the garage camera to my phone so I could see my nesting partner arrive before I heard unexpected noise in the house. Quality of life improvements. Receiving wildflowers from my nesting partner. Sweet potato, pasta, Pho, and cheese! (Mozzarella testing continues). My nesting partner cuddling with me in the dark. My cat on my chest, purring, gallant.
The excited conversations about game design. Wheeling into the kitchen and successfully procuring rice cakes and sunflower seed butter while blindfolded. Bath times. Chatter. Protocols. Violin playing while enjoying a bite of Xmas cookie. Giving my nesting partner admin support. Autistic joy. Friends who showed up. Text threads that lifted me. Hot, spirited eroticism at midnight.
My cat chirp-meowing for play and giving me expectant looks when he wanted to run, encouraging me to connect with joy and movement even when I was painfully still and quiet. His antics playing in the bed. Waking my nesting partner up at midnight to play ākitty baseballā.
Other moments like when my nesting partner's mom attested that the obgyn we saw was indeed rigid and unsupportive. When my PCP bestowed 1.5 pages of accommodations we didn't specifically ask for after our first ever encounter. My nesting partner excitedly showing off the new medical organization system they made with all my documents bound in one place, to guide and succor.
Learning that 0.5 mg of THC makes my pain more or less disappear, evens out my mood, and helps my hips pop into placeābut it also terrifies me because I don't want another medication disaster or denial of care.
I remember the methodical concoctions we co-created. Like the THC protocol my nesting partnerās nimble brain helped me conjure so I could comfortably (and more safely) test them out without losing my mind or jeopardizing a future surgery. Or when I fervently reformatted our Berkey Cleaning Guide to further assist our future selves.
Seeing new tracks and signs of my progress even when itās not fast, linear, or noticeable. Like a three-hour conversation about a triggerāwithout shutting downāwas growth. That recognizing rejection sensitivity in real time was improvement. That asking for what I needed instead of waiting was a breakthrough.
Learning that my 2025 mood stats were better than I thought: 9 days uplifted, 156 meh, 162 down, 23 lowest. Not the worst for a year lost in the woods like this.
Sussing out when my depression is from physical pain vs emotional. Learning that my body normalizes slow-boil agony until I don't know what temperature I'm at and the pain becomes endless and familiar. Or how increased pain plus lack of sleep plus an inability to eat is a recipe for guaranteed anxiety, meltdown, spiraling, and/or suicidal ideation.
Learning that even in the darkest times, I could blow up at my nesting partner whoād intuitively predicted it, and that they would remain by my side, undaunted. And how Iāve appreciated being there to help them when they fell apart, that I could be steady when they were not.
I have no hope that medical systems built by oafs will ever support bodies like mine. Iāve lost all hope that this will be a quick or easy enough journey. I'm not okay even though I have sufficing income and therapy, and a myriad of pleasure and skills and friends and beauty and love.
I keep trying to do the slow work of staying alive in this painful, uncooperative body, while also trying to find my way out of this suffocating wilderness. Itās hard and getting harder. I will keep relying on others for the hope and light Iām not able to cultivate. I will do my best to meet whatever comes next with these life sucking fibroidsāa surgery, potentially at a Mayo Clinic somewhere? Until then, I will be here with the endlessā¦ fuckingā¦ waitingā¦
Maybe my PCP will have some magic dust to make things easier. Maybe my nesting partnerās dad staying for a month will progress this quest more than I expect. Maybe. Maybe. Maybeā¦
I donāt know how this part of my story resolves yet, but Iām grateful you chose to follow me through this dark, winding, ogre and vampire-infested forestāalongside a brilliant nymph, a fellowship of friends and family, a kindly fairy, and one fiercely protective mountain lion.
I did not get back to sleep after the random wake up. I didnāt really have to pee much either. My heart has kept thumping in my chest, not hammering, but not calmly/quietly beating away either. My mind is in the past, thinking about my ex, about therapy, bits of thoughts about many other things. Still fixated on the city building game Iāve been playingāoperation zone out/distraction has been a success, Iāve even forget to post these entries and do my bed-time journal gamesā¦ maybe too successful? š¤·
In therapy earlier, I finally felt grounded and present at the end. My therapist asked how I could tell, I said that my mind wasnāt in the past or future, there were no loud thoughts jostling to be heard, I felt a sense of quiet, an ease of being in the moment, and a continuous awareness of the present moment that was not effortful to maintain, it just was.
Iām trying to have compassion for myself now that Iām not in the present moment. I know thatās ok, I donāt need to fix anything or change myself, I can just be here enjoying the warmth of my heating pad while held by my nesting partnerās sleeping form. I donāt need to sleep if thatās not what my body is ready for, I can just relax and enjoy the pleasantness of my nesting partnerās arm over my side, their warmth at my back, their forehead pressed against my skull, the feel of their shallow sleeping breaths, chest rising and falling, soft sounds of air going in and out. I can focus on the comforting darkness around me, the bed beneath me held up by the earth. The ok-ness of my left leg under me, following pleasant sensations, or ok sensations. My nesting partner shifting their legs and my sigh of pleasure at the new position and contact.
Yawn š„± Oh thatās a good sign. Followed by another yawn, and then my eyes leak water. More good signs. Something is shifting, releasing. It feels pleasant in my chest and heart area š„± My belly feels softer š„±More eye water. Lower legs both feel ok, neutral. I can feel my nesting partnerās love for me sinking back into my awareness, reality, present moment. They hold me because they love me, feel safe with me, enjoy it, are comforted by my presence āŗļøš„±
Shortly after that, a wave of uterine pain washed over me and I felt awful. My baseline pain has constantly been at 3/3 since November, compared to the 1/3 when we moved here, and subsequently the 2/3 it was last year (before the excruciating pain that sent me to the ER last year).
So to translate, on a scale of 0-10 (nothing-excruciating), the physical pain Iām in daily is:
* while not on any OTC pain relievers is between 8-10
* on OTC pain relievers during first few days of period is at 11
* on OTC pain relievers on all other days is between 4-7
* on THC during first days of period is between 5-7
* on THC on all other days is between 1-3
The pain is mostly originating from fibroids but itās not a localized pain unless I put pressure on the fibroids themselves, then thatās a sharp pain spike for hours. I also feel other, distinct pain, like how my low back/hips ache constantly (from fibroids) or my right shoulder/arm/wrist constantly ache/tingle (from phone use), how I ache all over from lack of movement/ stretching/exercise, and my stomach organ constantly aches but isnāt noticeable until my cat puts a paw on it (or I press on it).
I only slept from about 5:30a until 11:30a. Today is miserable. I donāt want to talk to anyone. The chatter I did have with my nesting partner during my first meal ended with me processing emotional stuff and feeling heavier than when we started.
Itās 6:30p now, Iāve been distracting with Pocket City to give myself distance from overwhelming feels, and give myself time to regulate.
All I can feel is a desire to stop strugglingāto lay down the weight of all this. I'm feeling completely depleted and deeply depressed.
Got hyperfocused for 7 hrs on a different city builder game, Pocket City. For a small one time fee, it had no ads or in-app purchases š Simple, nostalgic, worth it.
Went to sleep about 5:30a. Woke at 8:30a in pain and worsening physical exhaustion. The difference between being on THC and being off it is becoming stark and agonizing. It gives me a mood boost, a boost of energy, and minimizes pain so itās almost non existent. Right now Iām acutely aware of how much pain Iām ināthe effects have worn off/are wearing off from 2a yesterday. Iām miserable, the ache is so intense, I no longer have false energy, my mood is tanking. I cannot handle this level of swing. I desperately want to keep taking it, but Iām too afraid because of how it could fuck with me, I acquired disabilities from one drug snafu, I donāt want more. I feel āaddictedā to it whether or not thereās a clinical addiction happening, simply because it makes me feel ok when Iām so miserable otherwise, I just want to feel ok. This feels scary and dangerous. It feels worse to not take it, but IDK what else to do. IDK if Iām making sense to myself.
Oh I just remembered, CBD lowers blood pressure. Iāve been taking it every day for a while. That could be why my BP is even lower. I stopped taking daily for that reason years ago. I forgot.
It seems that both things helping me with pain are fucking with me in bad ways. I feel cursed, doomed, miserable š°š«Øš³š Iām feeling hopeless. The panic attack/depression/spiral isnāt around yet, my feelings feel far off and fuzzy, despite breathing shallow and feeling low-key anxiety. Luckily my emotions are not strong/potent. But itāll become an issue if I donāt get help soon enough.
I want to be convinced to take THC, to have āevidenceā to support my desires to take it, despite everything in me saying ānoā.
I donāt want anything to add to denial of a surgery or treatment. Iāve literally been denied twice to necessary medical care (prescription drug + recent obgyn). I DONāT want that again. Iām so scared. And I donāt want to be called paranoid. My fears are grounded and balanced.
My friend came over to support for an hour. Iām no longer spiraling. I also have no hope that Iāll be getting back to sleep even though I only got 3 hrs rest.
I deleted the Sky: Children of the Light game. It was messing with my disabilities too much. I stumbled on Simcity for mobile and thought that would be a fun, nostalgic thing to keep me occupiedā¦
Some Hours Laterā¦
It was intentionally designed to make it difficult to play if I didnāt constantly pay for in app purchases! š I deleted it. Back to the drawing boardā¦ šš
Finally took a look at my Daylio mood tracking stats for 2025. I had:
* 9 days of an uplifted/pleasant mood
* 156 days of a meh/neutral mood
* 162 days of a down mood
* 23 days of the lowest mood.
Iām surprised, I would have guessed the lowest mood to have been significantly more. My best overall mood was in January, which makes sense considering it wasnāt until February that I was officially in bed every day. Overall, not bad considering Iāve been stuck in our bedroom for a year. I wonder how the rest of 2026 will turn outā¦ š¤
My cat is the fucking cutest. I love when he wants to play he makes short, uplifted, chirp-meows, and when he doesnāt get play and wants it, his meows become long and almost mournful. I love the way he gives me an expectant, playful look when he wants to run, asking me to get him started by shuffling my feet playfully like Iām about to chase him, or wanting me to throw his favorite ball down the hall šøš»šŗ
I think Iām finally back to baseline since I went to the gyno appt on Tue. Only took 5 days of post exertion malaise to recover.
My nesting partner has been playing a new strategy game lately and is getting closer with their team leader by being their classic, helpful, detailed, logistical self. Itās been fun hearing about how all their live teammates have been enjoying them in the league. It got me thinking about playing video games againābut on my phone and with live teammates for more connectionāas something to pass the time. I did a search for non-violent, massive multiplayer online games and downloaded Sky: Children of the Light. Itās a 3D game with a sweet premise (return light to the darkened land). After downloading it, I was surprised that a non-violent game used violent words like ādefeat the darknessā.
I was able to play it for about 20 min before I got the beginnings of a headache from light and vertigo strain. My eyes have gotten better since the ER visit over two months ago, but not enough to play this game it seems. Iām gonna test it out a few more nights and see if tolerance goes up, but I might be back to the drawing board with an added query for ā2D gamesā. I must say though, Iām surprised at the quality of this game, for a mobile device itās so much better than the 90ās PC games I grew up with. Iām in awe of what humans have done with technology in 30 years. On. My. Phone! Just, wow!
I woke up after 8.5-9 hrs sleep. I chose to forgo the two pain pills during the middle of my slumber in favor of rest. Iāve been awake for 15-20 min and I feel a kind of depression, a malaise in my whole body, like a dull ache everywhere and nowhere. Sure my fibroid area is a little more achey, but nothing big or radiating or more noticeable than the rest (unless I move and feel the rock-like vampires jostle my insides). Itās like I canāt even tell that Iām in pain honestly, I just know I donāt feel calm, relaxed, at ease. I feel on the edge of agitated, addled, and sad. I can tell some of my muscles ache more than others, my hips hurt, my sacrum aches, my neck and right shoulder do too. Itās not pointed either, somehow thereās a little more ache there than everywhere else, but the pain in those areas is nearly constant so itās familiar, and familiar somehow makes it lessā¦? Itās hard to capture in words. Itās strange, and not what Iāve imagine pain to be like, at least not chronic pain. I only notice it in contrast to the general sensation of ok-ness, calmness, ease, and lack of ache when I take a 0.5 mg THC gummy. Itās like my physical body is depressed from the ache, not from emotional pain. Itās easy to mistake the depression as emotional but Iām not thinking of anything, the depression isnāt tied to anything, no other emotions are here right now, itās kind of a cavernous void where Iām used to a clattering cave with to many emotions to countā¦
Maybe itās kind of like the horrible, violent metaphor: the frog will jump out of a boiling pot, but not know the pot is boiling if itās put in when the water starts out cold. Like, I canāt tell that thereās pain because itās been a long simmer and I donāt know when or for how long this metaphorical water has been boiling, I have no idea what ātemperatureā Iām at. But if I were feeling amazing and pain free in ācold waterā then suddenly plunged into my body now, Iād be acutely aware of all the pain and how āhotā it is. The human body is incredibly (& unfortunately) adaptable to its surroundings and normalizes things quickly.
BP is lower than usual: 86/50, pulse 75. I feel foggier than yesterday, slightly headachy, like my heart is pounding, the headache is probably from trying the Sky game again, and the pounding heart probably from getting up a few times in a row to go to the bathroom, make tea, put away pill bottles, and refill water. I just finished eating (thatās when I usually check BP, after my first meal of the day) so Iām going to check it in a couple hours, after Iāve digested, and see if BP improves.
I was remindedāwhile hearing my nesting partnerās complaints about their increased sinus issuesāthat I may have more sinus pressure today. I took an extra Zyrtec about 20 min ago. Maybe itāll help with the increased brain fog and headache š¤·
Success! We finally made a postictal protocol that automatically happens post seizure, no sign language necessary.
āāāāāā
Postictal protocol
Once Iām in postictal, and in a safe, resting space, my nesting partner shares:
A. āYou are not a burden.ā
B. āI feel capable (enough forā¦)ā
C. āDo you want:ā
1. āA play-by-play?ā
2. āOr gratitudes?ā
If I have capacity to hear more, then Iāll sign āmoreā
āāāāāā
I wanted cheese. So I asked my nesting partner to bring me all our sliced cheeses and a bag of coffee beans. I smelled each cheese, cleansing my pallet with delicious coffee aroma between each š« Mozzarella won. I ate, nay, savored one slice. Now to wait a few days for results. I hope I can eat cheese again š¤
BP got a bit better: 90/55, pulse 66.
Why donāt we call boats water ships? We use the terms air ship and space shipā¦ š¤šāµļøā“ļøš¢ššø
I have been hyper focused on this trivial project I made up for myself. Iāve been bored and exploring a new social media just for something to do, and have been really into it this past 24 hrs. I donāt have any deadlines, it could have been a fun project to spread out over days to give me something to doālearning about it and implementing my knowledgeābut nooooā¦ brain said āhyperfocus until its done, forget about sleep!ā š§ šŖļøš§²
My nesting partner is going to facilitate a discussion between two leaders of their Saturday Circling group before the Circling event, so theyāll be up early and be gone a long time. Well, longer than usual anyway. I hope, with a staggered intake of muscle relaxer, cbd oil, and microdose of THC gummy several hours before 5a, Iāll actually sleep today. Iām really over these sleep issues š
Iāve been able to hold onto hope for fibroid removal since my nesting partner mentioned thereās a possibility a Mayo Clinic might take my case, since all they do is interdisciplinary edge cases, and have a quick turn around time. Iām not totally convinced of the Mayo Clinic. I am extremely skeptical that Iāll get in, or that they can help, or how Iāll even get to one, but Iāve got a smidge of hope which is helping.
During my nesting partnerās weekly family video chat today, they updated their family on our visit with the obgyn. Their mother worked in an obgyn clinic at one point in her life, and shared that some surgeons she worked with had a very specific flow with the nurses, and were quite rigid about change. It felt validating to hear that indeed the obgyn/surgeon we met with had a factory like flow for able bodies only and was very rigid about change. What that obgyn tried to pass off as a me problem was actually a her problem. I hate when people donāt own their fucking shit, especially medical professionals! If you donāt have the skills, knowledge, and/or comfort, fucking say so instead of making it seem like Iām the problem! š¤š¤¬
I want to know what my PCP will say. I imagine I wonāt hear from her until Monday at the earliestā¦
Gonna listen to this new romance novel I started, Out On A Limb by Hannah Bonam-Young with two disabled characters. So far it seems promising. I enjoyed her novella, Set The Record Straight, so I thought Iād give this a try. Although in this book, theyāre a monogamous, cis-gendered, heterosexual couple, so thatās been mehā¦ I mean, theyāre not a couple yet, but they will be by the end, because: romance. Maybe this book will put me to sleepā¦?
I filled my mug with hot tea at 5a and left it for my nesting partner when they awoke (as they hadnāt left a mug with a tea bag for me to fill). Hoping my surprise will support their morning and day. Am so sleepy now.
I indeed slept! Almost 9 hrs! š š Iām slowly climbing out of post exertion malaise from the recent clinic visit.
Holy fuck I got my passport! And so much faster than expected!! They said probably middle to late March and itās here already! The first page with my ID is different compared to the past šÆ My photo idea that circumvented blinding myself worked too! Iām so fucking excited and relieved! I finally have a legal, valid, and up-to-date photo ID again! ššš„³šŗ
We made a protocol to test THC gummy usage. I want to keep taking it because I feel ok when I have some (emotionally, mentally and physically, especially because pain is nearly gone). I want to feel ok all the time but without the risk of harm further down the road. Because I had that awful snafu with the medication that lead to my FND/seizures, Iām naturally hyper cautious of getting into another situation like that with unknown, long term outcomes. Also want to make sure if I need to get off THC for surgery that I can safely do so. Iām so grateful for my nesting partnerās science-y brain and the research they did to help us come up with this plan.
āāāāāā
THC microdose testing protocol
FIRST test of THC microdose @ 0.5 mg
* 1x Every other day, For 5 weeks (1, 0, 1, 0ā¦)
* At 5 weeks, confirm if clinical withdrawal symptoms have been present in off days
* Symptoms are: increased insomnia, irritability, decreased appetite, and shakiness
If withdrawal symptoms are present, do not proceed to next test. Now choose:
* Lower dosage:
* Either increase time between usage,
* Use only as break through pain management,
* Take lower dosage at same frequency
* Or, decide to increase frequency to daily in order to avoid withdrawal, knowing clinical dependency will happen.
If no withdrawal then,
SECOND test of THC microdose @ 0.5 mg
* 1x Every day for 3 weeks
* At 3 weeks, go back to every other day for a week
* Confirm if clinical withdrawal is happening in off days
If withdrawal symptoms are present, do not proceed to next test. Now choose:
* Lower dosage:
* Either increase time between usage,
* Use only as break through pain management,
* Take lower dosage at same frequency
* Or, decide to increase frequency to daily in order to avoid withdrawal, knowing clinical dependency will happen.
If no withdrawal then,
THIRD test of THC microdose @ 0.5 mg
* Go for 6 weeks daily, and 1 week alternating to monitor for symptoms
* Afterwards, can keep repeating this test by doubling the weeks on it daily (12, 24) with a week of alternating before the next test.
* If no withdrawal symptoms by 24 weeks, likelihood of clinical dependency is unlikely. Can check in periodically with a week of alternating usage for peace of mind.
āāāāāā
My nesting partner knows I like fresh flowers and brings me a picking from their friendās edible garden every so often, like today āŗļø
As I ate those medium sized pasta shells, I couldnāt help but crave manicotti, though I would have settled for Alfredo sauce. So of course I looked up how much fiber cheese has. Zero. The answer is zero! Next week after testing steamed beets, I want to move on to cheese! Iāve abandoned cocoa powder since I had acid reflux, an irritated stomach, and mild nausea afterward. Doesnāt cure my deep craving for chocolate though š
My nesting partner enjoyed solo sex in bed before they fell asleep, without my involvement. I love that we have a dynamic where we can have separate experinces in the same space, and have our own erotic pleasure without needing to relocate. Itās so refreshing compared to typical ideals of how erotic pleasure and solo sex are portrayed in heteronormative, monogamous relationships.
Content Note: A mention of the word āeroticismā
We shared hot eroticism just after midnight. For some reason my brain latched on to my nesting partner as the hot ānerdā I got to share eroticism with. And I was about it š¤š„
They slept through the night as I hyper fixated on an inconsequential project. The 1/10 dose of THC gummy I tried (down from 1/4āwe are doing science to it), in combination with acetaminophen, and cbd oil relaxed my muscles so that my hips/sacrum popped into place while I lay in bed, and nothing felt painful! My mood evened out and I felt nice all night.
6a rolled around and I was not even the slightest bit sleepy. My nesting partner was starting to wake up so I cuddled with them hoping it would help me release the hyper-fixation. It did not. When they were fully awake I asked an ethical question I wasnāt sure how to approach in my mind. This turned into a three hour conversation that encompassed a known communication trigger I have. Iāve come a long way since the start of our relationship when we figured out I had this trigger. I was only slightly activated today, did not shut down, and was able to have an immediate three hour long conversation about it! Huge progress from the beginning when I immediately shut down and needed a delayed conversation that was 30-60 min tops.
Today, I recognized this trigger is tied to my rejection sensitivity dysphoria in a strong way. We mapped out nuances of my experience, and even connected around the ways it activated gender issues within my nesting partner šÆšš¼ We came up with three new communication protocols, and practiced them! Progress is not as fast as my nesting partner would like, but thereās also no situations causing urgency so theyāre content enough, and Iām happy with where weāre at. There are so many facets of my trauma that Iāve been working onānot to mention my health careāIām ok going slower here. This is ok. This was great progress. I can celebrate š
Itās 10:30a and my brain still wonāt wind down for sleep. I was hoping for a natural sleepiness to settle in, guess Iāll be trying to engage that manually with my sleep meditation playlist. Not often successful this way, but sometimesā¦
I asked for a meal around 4p but my nesting partner was struggling to move, and eventually had a seizure. I grabbed a meat stick and apple juice box from my snack station to tide me over until after 6p. Itās unfortunately common now-a-days that I wait for a few hours from when I ask for a meal to receive it. Iām glad we built systems to hold us through this.
Content Note: Depression and a mention of the word ākinkā.
Iām deeply depressed today. I feel broken and like Iāll never be put back together.
Separate thing, I texted my PCP: āSince getting back from the clinic visit, my urine stream has been weaker, despite having a full bladder it takes longer to empty. And I've been noticing a new ache on my left side like my muscles around my left waist are sore but I massage them and they don't feel sore like that. I'm wondering if something is going on with my kidney or ureter.ā
My nesting partner did a lot of research on heart rate monitoring for ME/CFS and there may be an avenue of biofeedback for us to try if I can get a physical therapist to help me implement, understand my results, and maintain it.
My RV friend came in to cuddle with me for about 20 min, her connection helped me regulate for a bit.
My cat has been well. Havenāt scheduled ultrasound yet. He has the sniffles today because of the weather. He typically loves to be on my legs or chest, unless heās eating, playing, running, or sun bathing.
I got to text chat with a friend at our regularly time, it was uplifting imagining kinky scenarios for whenever he is finally able to come visit.
My nesting partner made me a ābrownieā! So excited. It was their pancake mix plus egg, plus cocoa powder, microwaved for a couple minutes until fluffy. Unsweetened. It was delicious. Only thing I would have liked were some lightly sweetened chocolate chunks mixed in to have had the savory chocolate ābrownieā, plus melty chocolate bursts experience. Mmmmā¦. If this sits well in my stomach for the next few days, and after a couple more trials of it sitting well, I can upgrade my chocolate game. Going to be cautious about it though, since cocoa is high in fiber.
I slept almost 18 hrs! Still tired but feeling better.
There were about 8 times a seizure trigger happened yesterday, and yet NO seizures yesterday or in my sleep! I think the THC was the reason.
I texted my PCP:
āI do not wish to work with that clinic system, nor that obgyn
A) I did not like her
B) I didn't trust her
C) they are a medical factory for able bodies only
D) they do not perform laparoscopic surgeries & none of their methods would allow me to keep my cervix.
āCan you help finding someone else?
āAlso I'll prly need neurology clearance for any surgery so need a neurologist referral too šā
In the online, post clinic-meeting survey, in the āhow can we improveā box I said:
āEveryone needs lots of disability training and sensitivity/compassion skills. The way my MPOA was treated from the start was atrocious. The staff was antagonistic and unhelpful until the day I arrived. My MPOA is an extension of me, and how they were treated is how I expect to be treated. The entire system is set up for able-bodied people not for people with multiple, or challenging disabilities. I did not feel treated as human or equal. I would not recommend this organization to anyone who is disabled.ā
Yesterday my nesting partner shared with me what theyād learned and gone through at the clinic, after I blew up about how angry I was at all this stuff, and how I felt āattackedā when my nesting partner was trying to ask clarifying questions. Eventually I was able to regulate and we connected around the situation, my nesting partner reassuring me that my anger and yelling was ok, expected, and was not taken personally.
I learned that our PCP sent the clinic a 4 page document with 1.5 pages of detailed accomodations that we hadnāt specifically asked for (but were what we wanted) and each had a medical code to boot! Holy hell she did some research or something. I felt so supported. What a great doctor!
Our whole day is dedicated to a 20 min obgyn mtg š
I snuggled with my nesting partner in bed for a while enjoying their warmth and presence, not wanting to get up and sit in my rocking chair. I put on an audio book and lay awake in the dark, brain insisting I would not snooze despite how sleepy I was...
I dozed on and off from 2:30-8a! How? Why? I want to know so I can repeat it! But with more on, less off.
Time to get ready for the trip. It was much faster to prep myself today than last appointment. I even had time to French Braid my nesting partnerās hair (a stim that helps me regulate) and listen to an audio book and chill. Took a fraction of a THC gummy 3 hrs prior to travel, plus my pain and vertigo meds 2 hrs prior to travel, hopefully pain and nausea will not be an issue this time.
My nesting partner showed off my new medical binder they put together for us. Itās super organized and has lots of clever tools like an extra binder clip, a clip board (with built in rulers), plastic sleeves, a sharpie and pen, a folder and dividers. So good!
4:30p Home in bed earlier than expected. No seizures. No crash. Totally wiped.
Minutes after midnight: I notice feeling lustful, energetic, feeling ok kind of like I did in the before times (when I was more able bodied, before PTSD) when I was excited, energized, having a good day. Iām enjoying the emotions and sensations, and trusting none of it.
My nesting partner finally left a basket of clean clothes for me to sort before they went to sleep. We discussed this weeks ago, but their question on how I wanted the clothes (or when) didnāt prompt me to share the answer they needed. They needed an answer to a different question. āOne basket at a timeā I said. Turns out the clothes were already folded, so I put them away. My nesting partnerās clothes in their side of the closet are somewhat organized, but since we donāt have adequate lighting, and other people fold clothes for us, thier organization system is barely holding together. We both feel like itās a mess and I can see how it affects them. They donāt like interacting with their clothes because itās overwhelming. I feel sadness that they donāt get to engage with their wardrobe the way they want, and how they feel helpless about it. TBH I donāt get to do that with my clothes either, but in different ways for different reasons. Sigh šš
12:22a Pain has been nominal since about 9:30p yesterday. There, but not loud, in the background. I chose to skip the scheduled acetaminophen earlier to get a better idea of pain with THC.
2:06a Nothing interesting has happened, no trip from the THC. The pain remains at a dull roar without acetaminophen, so thatās something. Mouth still has more saliva than usual, but not as much as before.
2:23a This audiobook Iām listening to is š¤¦š¤¦š¤¦ but I donāt want to go through the effort of finding another to be equally disappointed. So I keep listening š
2:40p I woke up to texts, voicemails and audio messages about the clinic trip tomorrow. My nesting partner is there right now to confirm all is in order for the visit; things havenāt been going great already. I only woke up 40 min ago, anxiety is already swirling around me about to settle in like a thick cloud.
4:21p
My nesting partner: āWell, good news. [The unhelpful person I spoke to last time] was on the phone because she wasn't on front desk duty today. Had a very congenial set of interactions [at the clinic].ā
I love watching our friendsā cat (via the security cams) being taken out for walks every day. Itās a glimmer I enjoy and look forward to.
My nesting partner is at their friendās place decompressing after the clinic interaction. Iām so anxious to hear how it went. All I know is my PCP info went through, I do have an appointment tomorrow, and the transportation arrangements have been made. I have no idea what happened, how things went, nor how my nesting partner was treated. I did the online check in for my appointment, and added meds and diagnoses they didnāt have recorded.
I found an audio book about hysterectomies from an MD and bought it, as it was not available at my library. The Empowered Hysterectomy by Kameelah Phillips. I skipped the beginning with basic anatomy and history of hysterectomies. Iām now very clear on what kinds of surgery options there are and what to expect in each. I have decided on my two preferences: V-notes or Laparoscopy. I will want to hear my surgeon discuss these in regards to their skills and my body. Since I will not be engaging in conversations with these practitioners in any meaningful way, I want to have as much knowledge ahead of time so I can prepare questions and know what to expect at a pace that works best for my brain (x0.75 speed) and can take breaks as often or as long as needed.
Oh, I learned that the clinic will not be giving us an outline of this meeting structure. I hate that so much! Iām supposed to be learning from my obgyn doctor, not someone else. But noā¦ thatās not how this system works. I donāt get to know in advance what to anticipate so I can be ready for an effective meeting. On top of that, I donāt even know if this is a physical exam or just talking, what topics they expect to know from us or want to share with us, if this is the surgeon Iād be working with or someone else, if itās more about my conditions or a surgical discussionā¦ Instead I have a bunch of cognative demand to have every single detail on every single front (ones I might not even know yet) given to my nesting partner so they can have it on the tip of their brainā¦ Sure my nesting partner knows a lot about me and my desires already, but, like WTF!?! In 20 min?? What is this practitioner going to get in 20 min about my condition? My nesting partner and I process slower so we need more time to think and speak because thereās so much more data in our brains that we have to sift through while trying to make an accurate interpretation of what they are actually meaning when they say thingsāitās rare as fuck to get a literal thinker like us who asks very literal and precise questions without hidden or double meanings. Gah!! Iām so angry š¤š”š¤¬
Content Note: Mention of eroticism. Reflections on SI. Mild drug high.
3a I made myself an apple cinnamon tea, fuck I havenāt had one in years, it smelled soooo good. I sat back down in my rocking chair and saw my nesting partner shift in bed, their foot seeming to poke out from under the covers. We keep it cold at night, so I got up to fix the blanket and noticed their covers were haphazard and bunched. I straightened out the layers and tucked them in better. They briefly woke up, sighed with pleasure and fell into a deeper sleep.
My cat has been playful and running laps since I played with him using his favorite toy. I love watching his face light up with kitten energy before he runs. He is a fast runner, and he loves running. I wish we could get him a friend; I feel in my heart that Iām finally ready for another cat since his playmate passed away a few years ago. Those two loved playing ākitty race carsā togetherāmany times at 2a š¹. Unfortunately my nesting partner and I are not in a place to welcome another cat into our lives. I think my cat is lonely and wants a friend like him, I want that for him too. Maybe one day... For now we do our best to play with him multiple times a day and help him run when he asks us to.
I noticed today that itās the first of the month, that means the next clinic appointment is almost upon us. Anxiety is slinking in. I donāt have good feelings about this one. I donāt have hope itāll go well. Luckily our friend staying in their RV with us is going to help my nesting partner call the clinic to make certain we still have an appointment and they havenāt determined us ineligible for some bureaucratic reason. I donāt want to spend $350 on transport for no reason. I also know that if this meeting does happen, and it doesnāt go well, I donāt have to continue with them. I just donāt want the recovery time from a poor visit š. Iām sure not everything will be the worst, it will probably be a mix of somethings I find gratitude and support in, and some things that are awful, as all visits have been, including the horrible ER visit. I wish for nothing awful, only gratitude, like my PCP visit; Iād take more of that.
I slept about 10 hrs and woke at what is starting to be my usual waking time, between 3:30-4p. Only interrupted, as planned, for my acetaminophen pills. My stomach seems hungry but nothing sounds good, Iām even meh about pancakes š±
I started listening to a new romance novel last night, The Kiss Quotient, about an autistic character trying to get better at sex to attract a partner, written by Helen Hoang who is on the spectrum. Iām not sure how itās going to go but it doesnāt seem great so farāin chapter one, the main character recalls bad sexual experiences with men who used her and we already see her trauma responses from that play out š. Itās got me wondering why all romance characters are white, thin, fit and/or muscular, and are literally compared to models or actors (within patriarchal standards of beauty). Why do they also follow cis-gender, heteronormative tropes even when they are queer?! Examples, the more effeminate character is always shorter than the more masculine character; the fact that there are feminine and masculine tropes within a queer couple!
Another thing that irks me, everything is too perfect in romance novels, but just on the edge of realistic to seem kind of plausible if you know nothing about that thing. For instance, a house being built from scratch in the country within a year, a struggling character suddenly gets the perfect job or a windfall of unexpected money at the exact right moment, a main character is extremely wealthy from a young age (not from family money), a business is instantly successful, a blog takes off within days of posting and has hundreds of followers and thousands within a month or so. Real life is not that fast or instantly successful. Also, where are the fat people, the black and brown people and multi racial people, the disabled bodies, the middling incomes of both/all lovers, the beautiful people who are average looking, and the struggles of daily life that are never quite what anyone expects or wants but are good enough? Thereās so much beauty and story in the closer-to-real-life tales without needing to be hyper-realistic, gritty, overcoming hardship. Iād much rather hear about how a character doesnāt think their love interest is a Greek god/ess but finds their dimples charming. Iād much rather hear about how the business got started but it was slower than expected yet they found a few friends/family to chip in and help keep things afloat, but it wasnāt an overnight success nor a sinking failure. Or to hear about the struggle of looking at so many homes to buy and settling on one (after a realistic amount of time) that had a few annoyances but they turned out to not be a big deal. Or about a job search that took too many months but the main character had enough support that there were never any dire consequences. Nothing ever has to be unfortunate, there can (and should) be community support, but, like, realistic timeframes and expectations please!
I wanted a baked potato for the first time in weeks. Well it seemed appetizing enough, not a craving by any means. As soon as I took a bite though, my body craved an egg over-easy with it. I asked my nesting partner to make me one, they quickly messaged their preference to not multi-task while they were in their Authentic Relating games video call. My body needed it, so I stuck with my request. They kindly brought me two while in the call āŗļø I ate all of it! Uncertain how my guts will feel later, but I am surprised at how much I ate! Hope this helps my body.
Iāve been thinking of what my suicidal ideation is like. I have a feeling that the gyno clinic has a misconception about what it means to me, and I have no idea if theyāll ask about it or just assume the worst. For me itās more when Iām in a deep depression/trauma spiral where hope is gone, my skills are inaccessible, and I feel helpless and scared. This is when suicidal ideation comes in. It is a protective part saying, āthis is too muchā and āyour needs arenāt getting met/may never get met,ā and offers me a way out of endless pain. I do not imagine details, rather I have thoughts about the nothingness of non-existence, not imaginings, not mental pictures, just concepts in the form of words and phrases and ideas, like, āit would be better to not be alive.ā
Iāve learned that just because I have such a thought doesnāt mean itās what I want, or thatās who I am, or what I believe, nor anything else. Itās simply a thought. I try and approach these thoughts with non judgement, neutrality, like they have no moral value for me (itās not easy). Instead, I try to see my suicidal ideation as a helpful part of me letting me know something is terribly wrong in my life that needs fixing. Last year I had the second worst bout of suicidal ideation, and with my nesting partnerās help I was able to turn towards it, observe it as if it were a helpful child alerting me to its feelings and needs. I had a conversation with this part of me. It was the most intense, deeply painful, and scariest conversation I had, and became one of the most cathartic and empowering things Iāve done for my healing and growth. I couldnāt have done it without the skills of my nesting partner guiding me through it. From that, I learned that beauty is exceptionally important in my life, beauty of friendships, beauty of space, beauty of connection and creativity, beauty of pleasure; without beauty, existing isnāt worth the effort for me. I also learned that unregulated physical and emotional pain causes me to not want to exist. I honor and respect these parts of me. Iām even more intentional to not stay in the space of SI alone or for long, it is powerfully disruptive and I cannot get out without external support, like being stuck in a roaring ocean storm, itās not done alone.
7p I took a nibble of a THC gummy to see how it helps or doesnāt help with pain (or boredom). Tonight could be interesting.
8:40p Noticed I had more saliva in my mouth than usual but no other effects.
I remember yesterday my nesting partner and I talked about how people say they need spontaneity and shuck structure/scheduling/planning citing it as freedom, while (in our observations/opinions) it is at the detriment of their own autonomy. When they choose to live and move through the world letting things happen to them, instead of choosing how they want to feel and be and where to direct their life, their life becomes reactionary to their surroundings/events/others instead of intentional decisions. The funny thing for us is when weāre in spaces, or around people, that supposedly have no structure (or want no structure) they fail to realize (or accept) that there actually is structure, boundaries, containment, it is never lawless disorder. There are patterns of behavior that are predictable (after getting to know a person or group), there are things people wonāt do, expectations people have, social rules, even their āspontaneousā reactions can become predictable with enough data. These all create a predictable structure in which they operate in but seem to be completely unaware of, (it is infuriating to be told there isnāt structure when clearly there is). My nesting partner and I are the type to observe a group (or person) for a while to understand all the unspoken structures, expectations, parameters, protocols, norms, and such that entity/person has, before we engage so we know how to engage. Itās not like weāre super structured and never have spontaneity, we instead choose our containers to foster supportive spontaneity so that we can have best time, remain regulated and accommodated, we name the invisible and take ownership of it.
9:07p I feel a tad floaty in my limbs and mind, like the begining a of a high.
9:16p Head and sinuses are a little buzzy.
9:28p I feel the faintest bit physically agitated and jittery. Loosing my train of thought a little easier. Forgetting to inhale.
This is the third, fourth, fifth in time in my life Iāve tried weed. Second edible. I learned long ago that I canāt do lung stuff, but forgot each subsequent time š¤¦. Iāve finally learned to remember š
10:45p Done with hot eroticism. I had a surprising amount of energy and capacity. Pain was deceptively low. Accommodated myself so tomorrow wonāt be too bad (hopefully). Exerting myself today can have repercussions on my capacity tomorrow (want to avoid that post exertion malaise).
My vestibular and motor coordination has been lower than usual, sliding into wobblier territory.
I kind of want a Reesieās cup, I used to love those.
11:03p Why is it only 11?! Iām so bored
11:19p Time has slowed to a crawl. It feels like itās been an hour.
11:28p It seems I have the munchies, I keep wanting food snacks. Have eaten two rice cakes with sunflower seed butter. About to nom on a meat stick and down an apple juice.
New Achievement Unlocked: Mapping Space Through Sound
Sat, Jan. 31, 2026
I laid down in bed, eyes heavy, limbs and vestibular system wobbly with exhaustion, cuddled with EJ, and hoped for sleep. Promptly my brain booted up and refused sleep. Why?! š«
Iāve noticed something interesting lately. When itās super dark in my roomāafter I turn off the soft, under-bed lighting at nightāI get agitated and clumsier when my ears are covered by my (sleep) earplugs or noise cancelling headphones. Itās like I canāt tell where I am in space and can easily run into things even though I can just make out shapes in the room, even though Iām precisely aware of where everything is spatially, even with my eyes closed. But with my ears closed, I canāt manage. However, when I can hear, I have better balance, the sounds of the room orient me so I can navigate. I think Iām starting to pick up on spatial noises in new detail! I noticed it at the ER and recent clinic visits. I could āvisualizeā the rooms by hearing where everyone was and how they sounded in the space, the room tone helped define the volume and area for me. I canāt hear room tone on its own, but I can tell how big a space is and how itās laid out by the way noise sounds in it because of room tone, even through my noise protection! Itās pretty fucking cool! Iām also really good at 3D spatial visualization (even before my interior design training), this has helped me understand space, navigate quickly and with ease. I also have excellent memory for things Iāve touched and put away in particular locations. I can remember spatial locations I interacted with in vivid detail. Great spatial memory and visualization is a trait many dyslexic folks report having.
Weāve been successful at reintroducing foods on the low fiber list! I can eat all of these nowāas long as theyāre prepared fresh, cooked the minimum amount of time, and veggies are steamed only (I also have histamine interlace):
- GF pancakes, plain
- White wheat pasta
- White potatoes
- Sweet potatoes
- Carrot
- Zucchini
- Salmon (including sashimi)
- Cod
- Unaged, beef filet steak
- Chomps sea salt beef sticks
- Apple juice
- Rice cakes
- Sunflower seed butter
- Nori seaweed
- Ground turkey
- Ground lamb
- Ground chicken
- Chicken breast (special cooked)
- Cranberry juice, unsweetened
- Ghee
- Olive, algae & avocado oils
- Eggs
- Collagen
- Bella mushrooms, cooked
I plan to introduce steamed beets into my diet next week. I anticipate it going so well that it will be all my body wants to eat for a couple weeks. Right now Iām hooked on ghee + pasta and itās been with reluctance that my body has allowed me to add meat or carrots to it. Iām already over sweet potatoes, and rice cakes + sunflower seed butter. My stools are not as watery any more either. All good things for my digestive system!
Napped on and off between 3:30a and 8a. Slept from 8:30a-3:40p. Feeling somewhat decent now I slept close to 11 hrs. Looking forward to visiting with our friends who are staying with us for a while in their RV. I especially love watching them walk their cat. They arrived when I was sleeping.
I woke up to messages from lots of friends, and a metamour. It felt nice to receive so much community connection.
This evening Iām going to help my nesting partner clean our Berkey filters. And yes, we have a detailed, step-by-step protocol for that, too š¤š
My nesting partner asked if the muffins in the grocery delivery today were for them. They felt supported by all my purchases and pleasantly surprised by the secret addition of muffins just for them šš„°
I just learned about this relating tool called Decide 10, reblogged by @borderlinereminders. Iām really fascinated by it. The post had great examples and reasoning behind how it works and why, especially for disabled and borderline folks. I love the way this tool makes clear how invested or capable each person is when making a decision together, how it can probably bypass RSD, or bypass a lengthy conversation of what a āmaybeā even means. It feels better than the āyes means yesā and āno means noā rhetoric that is constructive but limited, which also doesnāt leave room for disabled or chronically ill people to share a middle area without extra effort. The premise in Decide 10 is that when asking for something from another person, or deciding something together, each person shares where theyāre at on a scale from 1-10 (low-high) for that thing, and when the numbers are added up (for 2 people), if they equal 10 or greater then the thing happensāa simple way to calculate compromise. Thereās nuance and alternate uses outlined in the article which I greatly appreciated. I imagine if there are more than two people, the arithmetic would need adjusting, but overall it seems like a helpful shorthand for gauging where someone is atāafter the tool has been learned and practiced of course, learning this tool might make it slow and cumbersome to use for a while. I wonder if my nesting partner and I might implement something like this... š§š I could see it being useful for us, Iām sure weād have lots of customizations š
7p We have just commenced the cleaning of the Berkey. Iām managing executive function by reading off each step to my nesting partner via voice chat. They are currently on step 3 (of 13): pre-cleaning all surfaces.
9p We finished cleaning the Berkey š I made a doc that was better organized than our chat message (with the instructions I had previously created). I even added a couple items when we were both confused on what an instruction meant. Itās only taken us four iterations to get this document to where it is now. Next time will be smoother, hopefully no instructions will need to change after this and itāll just flow. Iām so freakān excited about how ācleanā our Berkey Cleaning document is!! I got hyper focused on it, itās so well formatted now š Proud of us ššŗ
We enjoyably voice chatted for 1.5 hrs after, until my nesting partner declared they turned into a pumpkin šš
At midnight my nesting partner woke up convinced there was food debris on their nightstand left over from earlier and needed to clean it off. We had a short conversation about it and I reminded them there had been no food put on their nightstand at all. I was not sure if they were awake or sleep-talking to me. They sat up and everythingā¦ Iāll find out after I wake up around 4-5p today. (They were awake).
The other weekācould have been a few days ago? time has lost all meaning to meāmy nesting partner told me a bit of hopeful news that overwhelmed my heart in a good way. We have an agreement that they not share anything about politics, government, war, Syria, reproductive rights, trans rights, or any other heavy shit going on in the world, because it causes me extreme distress and fear that I cannot handle on top of everything Iām already going through. I am also extremely careful about the media I consume and avoid these things like the plague. My stability is critical. So they were very careful when sharing hopeful news about the people of Minneapolis going on a city wide strike for a day to demand change. I asked if it was due to something in the U.S.A. government and possibly the president, they said yes, and I remembered the issue with cops in that city several years ago, and my nesting partner agreed there was a connection. I have just learned it also has to do with ICE, and I remember a single social media post recently, where I read the first two lines were about ICE and a shooting š I promptly made sure I didnāt get more posts like that, but Iām started to put together a meta, grim pictureā¦
I was so happy to hear that people were striking, refusing to go to work, to shop, or go to school in order to make change happen. My heart filled with hope that people do care, and are doing something. I was overcome when I heard about the Minneapolis strike, and how it has been about a century since there was a strike in this country. I often feel hopeless about the world and this gave me a glimmer that things could be different, that people can make change happen together, that community can do big good, that people are wanting and doing something.
A friend of mine shared that she wasnāt going shopping later today becasue of a boycott. I asked what that meant and she shared the poster with me. The Minneapolis strike/boycott/protest has become a nationwide call to action! I hope it does create change. I hope that it does change things for the better. I donāt know how weāre in 2026 and things are still so bad around the world. Weāve progressed from the worst times in history, and yet weāre still in a worst time in history.
I want better for the world, so I decided to move our grocery delivery from later today to tomorrow. It is a small action, and it may put a bit more work on my nesting partner during all the Sat events they have planned already, but it will be worthwhile. I truly hope things change for the better. I need hope in society.
2:30a I heard my cat in the main house plying with his ball. Within minutes he came trotting onto the bed with the ball in his mouth, and proceeded to play on the bed next to my nesting partnerās sleeping body š¹ My cat batted it off the bed and looked expectantly at me. He wanted ākitty baseballā. I tossed it back to him and he batted it around and then tossed it off the bed and ran after it. My nesting partner woke up and was laughing with me at my catās adorable antics. A few times my nesting partner grabbed the ball and tossed it to my cat who delightedly played, huffed, and ran around the bed and our bedroom many times chasing it. My cat had full kitten energy. He never plays this late and certainly not with his jingle ball. It makes sense he wanted to play in here, Iāve only been able to play with him on the bed this past year, and weāre both in the bedroom so of course he wants to be near us. By the end of his play I could hear him panting and then he laid down on the tile to cool himself. Heās the fucking cutest!
3a My nesting partner hasnāt been able to fall back asleep. Theyāve been having stress dreams of caregiving, in conjunction with the upcoming appointment. Now theyāre brushing their teeth. I hope theyāre able to get back to sleep, they need rest.
My nesting partner did not get back to sleep. We chatted until I got sleepy and we cuddled in bed as I drifted off around 5a. I learned later, my nesting partner did fall asleep for a couple hours with me.
I woke at 9a to my nesting partner giving me the scheduled acetaminophen pills but was not able to go back to sleep. They cuddled me and I hoped Iād drift off, but no. We stayed up talking and discussing at an abstract, meta level what our area was doing for the boycott and our hopes for this movement.
I told them Iād like a bath, and after some time doing things I donāt remember, we took one in our sunken tub. We shared time together for over two hours chatting about gender, dysphoria, and what it would be like if we switched bodies. We outlined the exact details of how it would work and what weād want to experience as the other person. This was a delightful topic of discussion. At the end I asked my nesting partner how we could make this happen in reality. I truly and deeply want to experince life in their body for 24 hrs! To experience all the mundane things, the ability to go out in the sun, the massive memory skills they have, and also organize their work nook with their energy, strength, memories, and desires while using my deign and organization skills on their behalf. I also want to experience pleasure and eroticism in their body, and together with them in my body. They have lots of desires for experiencing things in my body too. I. Want. This. To. Happen!
Itās almost 9p and Iām tired. I hope Iāll sleep soon. Iāll probably sleep either a long time or a short time. But I donāt think my body will suddenly do a 180 with my sleep schedule and stay awake during the day again, unfortunately.
National Shutdown website for information about the strike:
Here are my bedtime gratitudes from my ritual journal-gamesāfinally getting back into this since my sleep schedule did a 180 and I lost track of all my habits.
List three things that you are grateful for:
1 Grateful for an amazingly supportive PCP doctor who came to our home and is on my side
2 Grateful for getting my passport ordered finally
3 Grateful for my growing friendship with my new(er) text buddy
4 Grateful for my catās love, protection, comfort, and loyaltyĀ
5 Greatful for my nesting partnerās excellent care
6 Greatful for how well my nesting partner and I communicate together, and how wonderfully skilled we are in relationshipĀ
My nesting partner cleaned the pretty litter and found my catās urine color had changed from yellow (slightly acidic) to olive green (healthy). I imagine the urine was slightly acidic due to it being concentrated, as the vet had indicated. But now my car has finally gotten hydrated enough, as indicated by my observations of him drinking from his water fountain once again since we moved it to the other side of our bathroom sink last week. Heās more autistic about change than we are š¹
Iāve been taking acetaminophen every 4 hrs since my period started to manage pain. Now that itās over, Iām gonna try letting the dosage lapse and see how much pain Iām in when I donāt have enough in my system. I set a reminder for 7p to check in with myself about it.
I listened to two romance audio books about an autistic main character. The Rosie Project and The Rosie Effect by Graeme Simsion. The author is not on the spectrum, but he knew autistic people well who he based the main character off of. I genuinely liked the main character which is why I kept listening even though I was frustrated by the plots and events. Also I was stuck in the world of that book and it was impossible to pivotāI tried. The author and voice actor are both Australian so that was fun.
[Spoiler Alert]
The woman the main character falls in love with was unlikeable, she had no character growth and was not, IMO, willing to change or accommodate her partner. She was a āfeministā but only in the way that she used it as a shield when men did things she didnāt agree with, and to choose not to understand men but instead to quickly judge them, including the main character who outwardly seemed like a judgy privledged white man. It was off putting that she continued to judge him throughout the books. Since we live in the main characters head, we know that his thought process and motivations are so far off norm, and how deeply sincere and thoughtful he is (in the way that so many autistic folks are).
Both books ended disappointingly. The main character chose to be with this woman even when she didnāt meet his criteria for someone who is compatible with him, not even the most critical, basic criteria. He stayed with her when she broke things off, twice. He stayed with her when she (a psychology student) didnāt accommodate him hardly ever, and passive aggressively blamed his behavior for her reactions without ever sharing her needs, feelings or requests. He stayed with her even though she never addressed her underlying traumas that she openly shared on day one of meeting him. He stayed with her when she never asked about his day or how he was, even though he learned to do that for her. He stayed with her when she broke their agreement to wait on having a baby until she was done with her thesis, and didnāt tell him she stopped taking her birth control. He stayed with her when she flew back to Australia while pregnant after waiting until the last moment to tell him that she wanted to divorce him and keep their baby. He stayed with her when she repeatedly made assumptions about him not being able to love simply based on his facial expressions and body language without discussing it with him, convincing herself he had no empathy when his behavior pointed to the contrary. He changed for her, he broke his routines for her, he dressed differently for her, he went through a lot of effort trying to figure out her needs and expressions and unspoken rules without her because she wasnāt going to communicate any of that with him. He chose to stay with her despite all this because it was so effortful to find a partner who accepted him enough and genuinely liked him enough in the first place. Heād had no success via the numerous avenues he tried for decades. I get that this is the case for too many autistic people, which saddens me. This book felt too realistic for me. I wanted to escape into a fun, loving fantasy, not into the daily grind and pain of autistic reality.
Another thing I disliked about these books, especially the second one, was the portrayal of difficulties living with autism in society. In the second book, the main character has two meltdowns (though by all accounts he should have had meltdowns earlier). TBH the main character is a bit on the asexual spectrum, and him choosing this woman to begin with felt like the author portraying how things could get better if the main character just did more neurtypical dating things, it didnāt feel authentic to autistic peopleās experiences. Anyway, so these meltdowns were outward displays of anger, controlled enough (no one was physically harmed), but scary to an unexpecting outsider. The second one happened on an airplane and the main character was profiled as a terrorist. It was awful to listen to, even though āeverything worked out in the endā and it was all āa big misunderstanding.ā This portal has given me yet another reason to be terrified of having an uncontrollable meltdown in public, especially being Arab-American and nonbinary (read: not a privileged white man).
[End of Spoiler].
Most of the time my meltdowns are an internal combustion, curling into a ball crying uncontrollably, unable to handle touch or any external stimuli. Add people poking and prodding me, needing me to talk to them, and creating more external stimuli when I canāt tell them what I need, makes everything worse. In my current state I cannot move my body a lot, and have very little muscle power to harm anyone. But I do not know for certain that I wouldnāt harm someone. Iām not sure if my lizard brain would take over completely and I suddenly fight, bite, hit, harm, run until Iām lost. I feel deep inside that Iām capable of it, and Iāve alerted my nesting partner to my fears of harming them if Iām in the wrong headspace. I know if Iām restrained, when in the wrong headspace, I freak the fuck out. In the two instances it happened, I had enough brain-body connection to prevent myself from harming the other person. I donāt like that I have yet another fear in my head from this book of how badly things can go ā¹ļø l felt like the books were hyper realistic and I am upset with how the author chose to escalate situations. Maybe allistic and neurotypical people need to know the dangers of what could happen, but autistic people are excruciatingly aware of how bad things can become. It was not a love letter to the community. It felt like a neurotypical finding empathy and understanding about autistic life through writing these hardships. I do not recommend this book to other autistics.
I keep wondering how long I want to go with this journal project, I keep coming back the idea of going until my surgery. Will see what I actually end up with š¤·
Tonight, before my nesting partner went to bed, we discussed how we want to approach organizing the hallway closet, which has become a bane in their existence. Iāve been waiting to do this since we moved in. Weāve settled on them taking everthing out on a Wed, laying it all out in the guest room, looking at it all and deciding what we actually want in the closet and donāt, then my nesting partner putting it all back within 5-6 days so their friend can do their sleepover on Tue. While itās not the full-on organization project we both love, it will make their life easier, gives me a way to be involved, and hopefully cut down on the laundry piles that have overtaken the game room.
After that, we briefly discussed a small grocery run this week before my nesting partner laid down in bed and had a seizure. They had a down day today and were not able to do anything on the 11 item list from yesterday, but they did a couple self care tasks. Their seizures happen when they have done too much and are over extended or over exhausted and stressed. Their postictal recovery is topically minutes (compared to mine which are hours to days).
When they were able to speak again, they requested help in the form of me telling them step-by-step how to get to the bathroom so they could pee. I got them the walker and told them what to do. In the water closet, they struggled to stand and coordinate their body to take off their pants. I joked āIāve had lots of experince with you doing this for me.ā
When they sat down, they cried. I was afraid they sat wrong or something suddenly hurt. After they put their pants back on, we sat on the bathroom floor coregulating. Come to find out, all their body sensations were overwhelming, the cold air on their skin, the cold seat, the feeling of fluids leaving their body, on top of gender dysphoria. For a change they were the one saying āI feel a need to say sorry, and check in with your emotional capacity for helping me.ā It felt nice to not be the only one in this relationship who falls apart and has self judgement and needs reassurance. It also felt nice that I had a lot of emotional capacity especially after 10 hrs of sleep and a full meal.
I was able to sit on the toilet lid to help them stand back up with minimal effort for me. They made it back to bed safely. I tucked them in and made sure they had water, their glasses, and a plan for tea in the morning that I could brew before I went to sleep.
Content Note: Depression, mention of misogyny & SI.
I have an in home primary care physician (PCP) scheduled to come today around mid afternoon, just under 12 hrs from nowāIām still awake all night and sleeping during the day. This person is part of a traveling doctors practice (primarily for disabled people, I think). I donāt have all the facts on this practice, I cannot handle that much unnecessary detail at this time in my life soā¦ š¤·š
My stomach has been upset since I tried liquid iron a couple days ago, despite doing everything right to prevent this. I have not been very hungry since. I tried potato flakes, itās barely sitting well.
Iām livid at the way this ānewā obgyn clinic has treated my nesting partner (and therefore me). Iām waiting on one last response from them to make a decision if I find a new gyno clinic, knowing full well it could delay things for 4-8 months. I do not want to be treated this poorly before ever setting foot in this space! š”
Weāve been looking for a case manager to help us with patient advocacy, we finally have several leads. It will be a couple days before my nesting partner is capable of following up on any of it, as theyāve been going almost non stop for 36 hrs with healthcare stuff.
Their friend came over yesterday for their weekly sleepover ritual, they both wore onzies. My nesting partner was in a unicorn one and their friend in a wolf one. Before hanging out with her, my nesting partner shared their boundaries and needs around not doing any more healthcare stuff, and how theyād be unable to support my mental health for the night. It was hard to hear but understandable. Internally I noticed feelings of anger and envy. I want a friend I can hang out with, where I can set down my emotions and tasks for a little while and just have fun. Instead I got text support from a friend to help me process my feelings and let out some of the building pressure.
After my friendās support, I silently cuddled my nesting partner to sleep and found myself sobbing as I held them.
Iām not in a good place. Iām still holding a lot of grief over the other thing Iāve been managing for the past few days thatās completely unrelated to healthcare stuff. And while my physical pain is no longer extreme, it is still higher than my manageable baseline was. My memory has become shoddier and Iām easily irritated. Itās very effortful to manage my state. I can feel how close I am to suicidal ideation. Not there yet. But close.
Condensing my life with my nesting partner into 30-180 min a day while weāre trying to manage all this is taking a huge toll on both of us šš¢
The way the ānewā clinic has been acting toward us has me worried once again that my body wonāt be capable of handling a surgery. That Iāll come out the other side with more FND issues or some new disabilities. I had finally been feeling capableā¦ that is evaporating quickly š°
I was woken up an hour before the appointment after 7 ish hours of sleep to take my scheduled acetaminophen and prepare for the doctorās arrival. She met with my nesting partner for nearly an hour getting all my informationāI was able to listen intermittently to them in the studio. Then she came into my darkened room, sat next to me in my wheelchair with my nesting partner in a chair next to our bed. She was super kind and affirming. She told me āyouāre so young!ā in shock at how much Iām going through at my age. I half joked that I feel like a million years old. She asked how she can help and I asked if she could wave a magic wand and make all these issues disappear šŖš
Finally, I thought to request help with pain and sleep management. Sheās going to think about all this and get back to me. She is going to help us with this clinic system and was surprised to hear how unsupportive they were, which was counter to her knowledge of them. She asked if Iād try going to the upcoming appointment to see if it gets more supportive with the doctor herself, and if it doesnāt work out she will help me find a new gyno.
Iām feeling hopeful that Iām finally, slowly getting a healthcare team together.
My nesting partner has a task list of 11 healthcare items for tomorrow. They were able to complete 10 the other day, they are hopeful they can complete the list tomorrow š¤š¤
I was prepared by a metamour who knows about medical systems, that the behavioral health thing this ānewā clinic has mentioned several times, might be to counsel me (especially because Iām not married to a man) that hysterectomy = no baby. Iām prepared for heteronormative, patriarchal misogyny to ensue š
My passport renewal has gone through! I found a (hopefully) great solution to the photo issue so I didnāt have to blind myself. Success ā šāØ
