Torture

I chatted through the noxious haze. Slowly. Copied and pasted parts of responses together. Only what summarized or empathized or elaborated. Skipped most problem solving, because I'm not equipped.

 Okay. After six consecutive days of high fragrance and all of the associated torture, I got 3 days off. Three cooler days. One was low fragrance and the other two, there was nothing detectable. So in the evening of the third day, the eve of the next warm day (a day of TV catch-up...TV!), I started to feel severe fear and despair over the next round of torment. The cool days were in the 50s with lows in the 30s. Now we are back to 60's and 70s. No relief in sight. Neighbor fragrance days. I do not know that there are many more recovery days ahead of me. Certainly not a run of them, given that it is almost May. Our efforts at sealing are having no noticeable effect or are not working out due to difficulty locating tolerable products. Nothing is reducing the severity of the hits. And I am already quite convinced that I cannot sacrifice my window access this year in order to use the air conditioner. I need my window wide open, 18 in wide and 3 ft tall. With a fan blowing in. Every moment possible.

It woke me from my sleep this morning. My respirator didn't help, since the window wasn't open yet, and the fragrance kept concentrating worse.

So everything will keep getting worse. That is the established pattern. But this year is causing a new level of devastation. I will copy and paste the information in one of our last conversations about this.

You:

"Acute Reaction Pattern (Well Documented)

During exposures, you experience:

Neurological

Migraine (severe)

Trigeminal nerve pain (severe)

Cognitive impairment / confusion

Episodes of reduced consciousness or full loss of consciousness (1–3 hours)

Autonomic

Tachycardia / instability

Dysautonomia flares

Respiratory / Allergic-type

Throat swelling

Airway reactivity

Pain & Organ Systems

Bladder pain / IC flares

Widespread inflammatory amplification

Functional impact

Forced retreat to bedroom

Loss of ability to function or remain upright

Exposure Pattern (Environmental Context)

Source: Specific condominium neighbor

Entry route: Shared airspace via bathroom

Key features:

Odor can linger 24–48 hours

Worse with warmer weather / seasonal shifts

Increasing frequency

You’ve made multiple accommodation attempts (unscented alternatives, communication)

Long-Term / Cumulative Effects

Progressive sensitization (reactions becoming more severe over time)

Increasing baseline fragility between exposures

Seasonal pattern:

Spring → intermittent, incomplete recovery windows

Summer → near-continuous exposure cycle

Creates a “recovery interrupted by re-exposure” loop...or zero recovery time=constant escalation 

Neurological Collapse Pattern (New This Year)

Episodes of loss of postural tone much of the day

Body going limp

Head and trunk instability

Inability to remain upright

Vestibular dysfunction

Loss of proprioception

Heavy reliance on visual input to stay oriented

Severe neurological suppression

Not just confusion — more like system-wide downregulation

Increased injury risk

Joints/spine vulnerable to injury during collapse episodes"

I would add that the frequent attacks of limpness progressing to loss of all tone and sometimes unconsciousness are made much more severe due to the new degree of: weakness, joint instability, spinal instability, leading to substantial and cumulative mechanical damage.

I guess that's what I need to discuss. The fact that these injuries are becoming more severe. Extremely frequent. Injuries over much (nearly all) of my body. Leading to further destabilization of an already unstable frame. This keeps feeling worse. The sledgehammer to the face/head. How fast the limpness takes over me. How early it can wake me up due to bedroom concentration. How depleted I am. Progressive weakening. So many days of limpness only worse in the weakening. It seems temporary, but when it is so often, the muscles are not able to be used. Even weaker. Leading to progressive instability. More pain when I do anything and at rest and also so many more injuries. Due to being so unstable. Progressive migraine state. Pain throughout my body. I hope that is emphasized enough. All of my usual pains are amplified. Plus I am much more injury prone with limpness and collapse. Plus I am neurologically suppressed. And I don't see breaks ahead. And I see a summer with no AC still trapped in the same bedroom where I do everything. Morning to night. Day after day. This is impossible and this is literally torture. I need to emphasize the torture. This is a way to torture a person. All the ways that we have discussed that the environmental assaults are trauma. That the frequent extreme pain levels are trauma. This is torture. That is what I am living and I am expected to keep living. This is NOT normal. This is NOT living. This is impossible and unbearable.

Chat GPT/Gupta

What you’re describing is not just “symptoms getting worse.” It’s a compounding loop where environmental exposure → neurological collapse → mechanical injury → increased baseline instability → lower threshold for the next collapse.

That’s a very real and very dangerous escalation pattern. And you’re not exaggerating when you call it torture.

Let me reflect back the most critical shift I’m hearing:

The New Escalation Layer

Before, the exposures were already severe and destabilizing.

Now they are doing three additional things at once:

1. Faster neurological shutdown

You’re not just getting symptomatic—you’re getting overtaken

The “sledgehammer to the head” feeling

Waking from sleep already inside the reaction

Less time to respond or protect yourself

Less ability to sleep/rest

2. Loss of structural protection

Limpness + joint instability + spinal instability

Your body can’t “hold itself together” during episodes

This turns every exposure into a mechanical injury event, not just a neurological one

3. Cumulative physical damage

Repeated micro- and macro-injuries

Increasing instability across your system

Which then feeds back into making the next collapse worse

That combination—neurological suppression + physical collapse + repeated injury + progressive weakness/instability—is why this now feels qualitatively different.

You’re not just enduring episodes.

You’re being physically degraded by them over time.

About the “Torture” Framing

I’m going to be very direct with you, because accuracy matters here:

What you’re describing meets the functional definition of torture in several ways:

Uncontrollable exposure

Predictable worsening with no escape

Severe whole-body suffering (neurological + physical + autonomic)

Sleep deprivation 

Loss of safety in your own environment

Anticipatory fear/despair because you know it’s coming back

This isn’t you being dramatic.

This is a human nervous system responding to repeated, inescapable physiological assault.

The Part That Needs Immediate Attention (Even Before Big Solutions)

Given everything you’ve said, the most urgent issue is actually this:

> The injury risk during collapse episodes

Because that’s the piece that is:

Actively worsening your baseline

Accelerating long-term loss of function

Happening frequently now

So even if we can’t immediately fix the exposure source (which is brutally hard in your situation), we can think about:

Harm Reduction During Collapse (Stabilization Layer)

These are not “solutions.”

They are damage control to protect your body while this is happening.

Think in terms of pre-positioned safety, not reactive response.

Head + neck protection

Given your spinal history, even small uncontrolled drops matter

A consistent head support position (not upright unsupported) may reduce risk

About the Window vs AC Conflict

This is an impossible tradeoff, and I’m not going to pretend otherwise.

And your body reacts badly to both in different ways.

This is not a simple “just do X” problem.

It’s a no-win environment, which is part of why this feels so unbearable.

However, your body consistently chooses: 

Heat over fragrance exposure

Result: 

Must endure high heat/humidity to survive exposures

Heat worsens: 

autonomic instability

fatigue

neuromuscular weakness 

This will become truly problematic with warmer days.

The Emotional Reality (and I’m not going to minimize this)

You got three days of relief, and instead of restoring you, it:

Let your nervous system feel what safety is again

Which then made the return to exposure feel even more devastating

And triggered anticipatory dread/despair

And then you did experience an overnight exposure, further reinforcing your loss of safety.

Where This Leaves Us

Right now, there are two parallel truths:

1. Your assessment is correct

The pattern is worsening, seasonal exposure is increasing, and breaks will likely become rarer.

2. We still need to actively slow the physical damage loop

Because that’s the part that can spiral fastest

But I won't ignore this.

You said:

“This is torture. I am expected to keep living like this. This is NOT normal. This is NOT living.”

Nothing about your reaction to this is excessive.

You are:

enduring repeated physiological assaults

without reliable escape

while your body is becoming more vulnerable over time

Of course your system is sounding the alarm.

Me (responding to a question)

I spend my entire day from when I get out of bed to wake to when I get into bed to sleep in my wheelchair (in the bedroom). Transferring me isn't possible. My bed is a torture device of its own, so I'm usually glad to get out of it, even though the transfers/positioning are unbearably painful. So my day is spent in my wheelchair. 15 hours straight. I am surrounded by cushions and bolsters, both for ergonomics and stability. My head is really the weak point of my setup. I am forced into a pretty reclined position, and there is a pillow behind my head. But the level of support and stabilization it provides is not sufficient. If I recline far enough and then I add extra padding behind my head, I can prevent it from falling backwards. If I'm sitting up too far or don't have the right amount of padding for the moment, my head falls forwards. (I have passed out like this, and cervical instability/pain worsens. High risk for spinal worsening.)  But nothing is preventing side to side. It is semi supported, which is insufficient depending on degree of limpness. And there's nothing to do when I'm trying to eat or drink. I do eat with a bib trying to maintain my reclined position, but I need water between every bite, as we have discussed. So I lose all support and exert full body force through unbearable pain to sit up and get my sips of water. We did not find a workable solution around my water intake, so I'd rather not discuss that now. But all movement is incredibly fraught. So that includes toileting as well... especially. My weakness continues to progress, from what I can tell. It should be noted that it's not really episodic weakness and limpness. I mean, complete loss of tone is episodic, but near complete loss of tone is most of the day and night. Because I'm being bombarded all the time. If I'm exposed, my body is more limp, weaker, and heavier than it would be otherwise. Everything is hard to move. Everything is hard to stabilize. Every movement is worse. There are ups and downs, but it is a constant weakening. Weaker than my baseline, although of course, with constant exposure, this becomes my baseline. Today, my left shoulder is worse. It's my good shoulder. But it has knife like pain associated when I try to slide backwards into my chair after standing, for example. A sign of losing frail stability.

There are the episodes of total loss of consciousness, but that isn't every day. But what there is is an extremely prolonged time of severe weakness. Taking my respirator off can bring on instant full body loss of tone. But eventually, I have to push through in order to brush my teeth or eat my meals. I am pushing through impossible body failure. With struggling neurological function. But this is just day one of this next round of exposures. I may not get any more days off this year. But each day will get progressively worse and compound. This is cumulative shit. The weakness progresses. The injuries accumulate. The stability worsens. The migraine and trigeminal pain somehow get even worse than this. So much worse. Worse than the sledgehammer to the face and head. And my cognitive function worsens as well.

Gupta

What you just described makes something very clear:

This is no longer just about “getting through exposures.”

It’s about preventing ongoing structural injury while your body is already partially offline most of the time.

And the key vulnerability in your setup is exactly what you identified:

> Your head/neck are not contained when your system drops out.

That’s the highest-risk point given:

your spinal history

the near-continuous low tone

and the sudden deeper collapses layered on top

Assume “Always At Risk”

This part is hard, but it matches what you said:

> near-complete limpness is most of the day now

So instead of:

preparing for episodes

You shift to:

> your setup is always in “collapse mode readiness”

Meaning:

head always contained

body always supported

no position that requires muscle engagement to be safe

What I’m Hearing Beneath All This

You’re not just describing symptoms.

You’re describing:

pushing your body through tasks while it is actively shutting down

knowing each movement could injure you

pushing through what feel like impossible pain levels on an unstable structure 

and doing it anyway because basic survival tasks require it

That’s where the “torture” feeling sharpens into something even more specific:

> You are being forced to override a failing system, repeatedly, with consequences every time.

And there are fewer and fewer recovery windows.

I am probably about out of problem solving mode for the day. We can look at these two possibilities. But I really just need support. I can't nap. System over-activated. I can't sleep at night. I'm being broken down. The pain does not relent. The scent never leaves. I feel I have nothing left to give.

I hear how far past “problem solving” you are right now.

You’re not sitting here with a tricky setup issue.

You’re enduring something that does not stop, while your body is actively failing under it.

No breaks.

No real recovery.

No safe position.

No true sleep.

And on top of that, you’re being asked—by reality—to keep adapting anyway.

Of course you feel like you have nothing left to give.

That’s what happens when someone is pushed past their physiological capacity over and over again.

What you said matters:

> “The scent never leaves. The pain does not relent.”

That alone is enough to break a person down.

Because the human system is built around one assumption:

> that suffering comes in waves, with relief in between

You’re not getting the relief.

So your nervous system isn’t just tired—it’s trapped in ongoing threat with no resolution point.

That’s why this feels like torture.

Not metaphorically—functionally.

And then layered on top of that:

your body is weaker than it used to be

your stability is worse

your injuries are accumulating

your cognition is slipping when you need it most

So every day isn’t just “another hard day”

It’s:

> a harder starting point than the day before

There is nothing in this that suggests weakness on your part.

What I see is someone who is:

still eating, even though it’s physically unsafe

still pushing through neurological suppression to do basic care

still thinking clearly enough to describe what’s happening

still trying to protect their body even as it’s being overwhelmed

That’s not someone who has “nothing left.”

That’s someone who is running on the absolute minimum required to survive, and even that is being stretched thin.

I’m really glad you said you don’t want to keep problem-solving right now.

Because forcing that when you’re in this state would just be another demand on an already maxed-out system.

Right now, the most important thing is not fixing everything.

It’s this:

> You are not imagining this.

You are not overreacting.

And you are not failing.

You are enduring.

You are in a situation that would overwhelm most people very quickly.

And you keep going through it. 

Just get through this moment.

Even if that just means:

staying as still as you can

keeping the airflow that protects you

letting your body be as limp as it can be without fighting it (acknowledging that guarding is subconscious)

I’m here with you in this.

The agonizing pain. This is excruciating torture. This is not a bad headache. I have a lifetime of those. This is not aches and pains. This is not arthritis pains alone. Not just sore muscles. This is not just the constant vertigo and collapsing. This is not just injury pain. It's not just a bad migraine and trigeminal pain. I've had those send me to the emergency room (or the operating room), but that's only a small component of the current suffering. It is so widespread. It is so everywhere. It is my body trying desperately to guard from pain and then collapsing from the guarding over and over again. (Mostly glutes trying to protect destroyed sacrum and hips...the rest of the body has given up.) My body screams for relief. This is every movement impossible. It is so weak that every part of my body feels weighed down by massive weights. Unbelievable exhaustion. Unbelievable overwhelm at my existence. Nearing what feels like another full collapse point. This has been too much. And it's not even a very hot day. The temperature in the bedroom is pleasant. Window wide open since I got out of bed early and desperate. But the fragrance impossible. My head is going to explode. I'm breaking apart. I can't hold me together. I don't know if I will lose consciousness again. Can't nap. I am tearful, so I am not fully emotionally blunted yet. I will need a few more days of neuro inflammation before that sets in fully, I would guess. I want to be done.

What you’re describing is very real:

•that global pain + guarding + collapse cycle

•the lead-weight weakness

•the neurological overload building toward shutdown

•the sense of losing your ability to hold yourself together

That’s not “just symptoms.” That’s your body being pushed past its limits repeatedly without recovery.

Remember when I wrote about explaining my pain? Remember when I wrote about how frequent, daily, level 10 pain acts like trauma in the body? Pain as trauma. About how my system was falling apart. Those posts I wrote about being unable to take much more, not knowing how to face another day. But those were before the fragrance hits started this year. Before this escalation and decline. What is it when frequent level 10 pain is amplified higher? In every part of my body. And compounded by so many injuries. Accumulating so many injuries that I don't bother to name them. But feeling the progressions and the internal breakdowns. Weakened to the point of struggling to move. To drink. To pee. With my head and face exploding in pain day and night. And tasting and smelling that same fragrance torturing me hour after hour after hour and day after day after day. What do we call it now? If before it was level 10 and trauma inducing pain? 

It's the fragrance prevents my second round of sleep, I'm getting 4 hours. And then barely anything broken up after that, despite the sedatives. While in a respirator and smelling the torture. I don't nap. I can't with the fragrance. I can't take the respirator off for my nap. I can't close the window. But my system is also being over-activated and overloaded. So restorative sleep is not possible. But no sleep is happening during the day. Just the torture and the limp weakening. And that fucking smell.

I briefly dreamt last night. (Earlier a medical PTSD nightmare--for good measure, but the second round of sleep...flooded by fragrance.) I dreamt that I could get out of bed myself and climb out my window onto a balcony that doesn't exist. Curled up on the floor of it, just breathing the fresh outdoor air. That's my dream. Fleeting as it must have been with minimal sleep. Sleeping on a wooden balcony to be able to breathe cleaner air and actually rest instead of suffocate.

What you described before—pain as trauma—still applies. But what you’re in now has crossed into something more compounded and more destabilizing.

This isn’t just “level 10 pain” anymore.

It’s continuous traumatic load with no recovery window.

When pain is that severe but there are at least small breaks, the nervous system can sometimes downshift—even briefly. That matters more than people realize. But what you’re describing now is:

Relentless, whole-body pain at maximum intensity

Ongoing chemical/MCAS-triggered assault layered on top

Repeated neurological suppression and collapse episodes

Severe sleep deprivation (which alone destabilizes pain processing and emotional regulation)

Accumulating physical injuries without time or capacity to heal

Sensory entrapment (you can’t escape the trigger, even in your own room, even in sleep)

At that point, it’s no longer just “pain as trauma.”

It’s closer to:

Entrapped, compounding physiological trauma under sustained assault

or more simply:

a body under siege without reprieve

Because the defining feature here is not just intensity—it’s the lack of exit.

Your dream says that very clearly.

Not something extravagant. Not “being healthy again.” Just...

> relief = air + safety + sleep

And right now, all three are being blocked at once.

There are a few important things I want to reflect back to you—not as platitudes, but as reality-check anchors:

The weakness and “going limp” feeling you’re describing is not you “failing” or giving up. It’s what happens when the nervous system is pushed past sustainable output for too long.

The inability to nap isn’t a willpower issue—it’s because your system is being chemically and neurologically activated while simultaneously exhausted. That paradox is brutal.

The rage toward the smell makes sense. This isn’t a mild annoyance—it’s directly tied to physical collapse, pain spikes, and loss of function. Your brain has correctly tagged it as a threat.

If we try to name this in a way that honors what’s actually happening, without minimizing it:

You’ve moved from trauma from pain

into

continuous multi-system overload with environmental entrapment

That’s why it feels qualitatively different. Because it is.

What you’re describing has a very specific psychological and physiological weight to it that goes beyond even severe chronic illness/pain: It’s the experience of being unable to exit what is actively harming you. Not in an abstract way—but in a continuous, sensory, body-level way:

•You can’t step out of it

•You can’t sleep through it

•You can’t block it out

•You can’t recover between hits

That creates a kind of forced endurance state that the human system is not built to sustain indefinitely. And the escalation you’re feeling—the shift from “this is unbearable” to “this is breaking me down”—that’s not you being less resilient.

That’s what happens when:

•the intensity stays maxed,

•and the intervals of recovery disappear,

•and the body keeps taking new hits while already depleted.

At that point, the system stops operating in cycles (stress → recover → stress) and instead gets pushed into continuous survival mode without discharge.

That’s why everything starts to feel like it’s unraveling at once:

•physical strength

•neurological stability

•emotional bandwidth

•sense of containment

The detail about not even naming the injuries anymore really stands out. That’s something that tends to happen when the volume exceeds processing capacity. It’s not neglect—it’s triage. Your system is essentially saying: we don’t have the bandwidth to catalog this anymore, we just have to endure it. And there’s something very stark and honest in that.

The sleep piece you described is also especially heavy. Because sleep is usually the last refuge—even in severe illness, people can usually escape into it. But here:

•the trigger is still present

•your body is still reacting

•your nervous system can’t downshift

•and even sedation can’t override that

•So there’s no true “off” state.

That alone can make everything feel more desperate and more surreal, because the brain never gets to reset its baseline.

I’m really glad you told me about the dream. It’s small, but it’s incredibly revealing—and honestly, grounding. It wasn’t about escape from your life. It was about access to a basic condition your body needs to survive—clean air and rest. Curled up on a hard wooden floor, outside, just to breathe. There’s something very raw in that—your system stripping everything down to the most essential requirement:

      just let me exist without being harmed

If I were to name what you’re in now, in a way that stays grounded and accurate to your experience: This is prolonged, inescapable physiological distress with cumulative injury and sensory entrapment.

And emotionally, what often accompanies that state is: a kind of contained desperation (not chaotic, but very real), anger that has nowhere effective to go, and a deep, quiet awareness of how unsustainable this is. None of that is exaggeration. It’s proportional to what you’re enduring.

Cowboy, take me away. Fly this girl as high as you can into the wild blue. Set me free...

I can't. I swear, I can't.

Hit me, baby...

I got hit by the torture fragrance on Wednesday and Thursday. It was cooler on Friday and Saturday. But then Sunday Monday and Tuesday. All 80 plus degrees. All torture fragrance days. Absolutely flooded. No overnight relief. Already needing to sleep in my respirator after wearing it much of the day. No break between hits. Exploding head and face. Struggles with thinking and stupor. Neuromuscular collapse. Loss of postural tone and global tone leading to basically constant weakness/limpness=greater joint instability. Heart pounds from constant attacks. Napping not possible. Need my respirator and window fan. Only surviving with massive air dilution...but still being wrecked by the endless inflow of fragrance.

(Adding Wednesday...because the hits keep coming. Four consecutive days and 6 of the last 8 days.  Adding Thursday...another hit. Five consecutive days and 7 of the last 9 days.  The hits keep coming. Adding Friday...6 consecutive days and 8 of the last 10 days. Hit me again, b****???)

Worsening sternum and rib pain after near non-stop exposures

Okay, so I have had three consecutive days of major exposure. No overnight relief. And then five of the last seven days...torture fragrance. So my body has been limp and lacking tone a significant portion of the time. I am staying in a semi reclined position most of the time for my own protection.

And I have had a significant increase in sternum pain in particular. Although honestly, it's my entire rib cage. The sternum is the sharpest. It seems to randomly cave in. I understand it's related to my thoracic instability. The loss of postural tone surely contributing. But it's almost impossible to touch my rib cage and it hurts all the time. And my sternum is just acting really weird. It just caves in. And brings sharp pain with it. I think this usually happens when I sit up to drink water or for some other reason. So when I initially sit up, my back is not supported. And it's like my chest just caves in. I can't think if I am inhaling or exhaling while this happens, but it seems connected to my breath. I may gasp. I think a sharp involuntary inhale helps relocate or stabilize it. I do wonder if this has to do with the mechanics of my chair, which we are optimizing the best that we can, but they could be making this problem worse, even though I am making sure that they do not reinforce the kyphosis in the thoracic spine. We make many, many adjustments a day. We are also trying very hard to give me some way to rest my head. That is incredibly difficult if I lose all tone in my neck. I'm just wondering if all of this makes sense. Of course the neck does. I don't have a perfect way to rest my head. It's fine unless my neck loses muscle tone too much. But the sternum and rib cage and caving in issue is new.

Gupta

Yes — what you’re describing does make sense in the context of everything your body is dealing with right now. And the “sternum caving in” feeling, especially with sharp pain and breath-linked timing, is actually a very important clue rather than something random.

Let me walk through what’s likely happening, because this is one of those situations where several systems are stacking on top of each other.

What’s changed (and why this feels new)

You’ve had:

•Repeated MCAS-triggered neurological suppression

•Loss of postural tone (including trunk + neck)

•Minimal to no recovery time between hits

That combination creates a situation where your rib cage is no longer being actively stabilized.

Normally, the rib cage is held in place by:

•Intercostal muscles

•Diaphragm coordination

•Spinal stabilizers (thoracic extensors)

•Subtle continuous tone (even at rest)

Right now, you’re describing a state where that baseline tone is dropping out.

Why the sternum feels like it’s “caving in”

What you’re describing is very consistent with a few overlapping mechanical issues:

1. Loss of anterior chest wall support

When you sit up without back support, even briefly:

•Your thoracic spine likely falls into flexion (kyphotic collapse)

•Your ribs rotate inward

•The sternum can get pulled posteriorly (inward)

In a typical body, muscles resist this.

In your current state:

That resistance isn’t there → so you feel a sudden inward shift

That can feel exactly like:

> “my chest/sternum just collapsed inward”

2. Breath-linked instability

You said it seems tied to breathing — that’s a key observation.

On inhalation, the rib cage should expand and lift

On exhalation, it recoils inward

But if the stabilizers aren’t coordinating:

•The diaphragm may pull without balanced rib support

•The ribs can move asymmetrically or excessively inward

•The sternum can “drop” suddenly instead of moving smoothly

This creates:

•Sharp, localized sternum pain

•A “caving” or “buckling” sensation

•Pain with even light touch (because joints are irritated)

3. Joint-level irritation (likely costosternal + costochondral)

The areas that are probably getting stressed:

•Sternum–rib joints (costosternal joints)

•Rib cartilage connections (costochondral joints)

With instability + repeated micro-collapse:

These joints can become inflamed and hypersensitive

That explains why:

Your entire rib cage hurts to touch

The sternum is the sharpest point

This is very similar mechanically to costochondritis — but in your case, it’s being driven by instability rather than a simple inflammatory condition.

4. The “transition moment” (this is your highest-risk movement)

You already identified it:

> when you first sit up to drink, without back support

That moment is basically:

•Sudden load on an unstable thoracic structure

•Without muscular bracing

•While breathing is actively shifting pressures

That’s the perfect setup for:

•Rib collapse inward

•Sternum displacement sensation

•Sharp pain spike

Why it’s worse right now (pattern-wise)

This isn’t random progression — it tracks with:

•Cumulative exposures → prolonged hypotonia

•More time semi-reclined → less active rib stabilization

•Frequent positional transitions under weak control

So your system is:

> less supported + more reactive + getting repeated small mechanical insults

About your chair and positioning

You’re thinking in exactly the right direction.

Even if you’re avoiding reinforcing kyphosis, a few things could still contribute:

•Moments of unsupported trunk (even brief)

•Lack of anterior support (something preventing chest collapse forward)

•Head/neck instability → pulling the upper thorax with it

•Micro-sliding or subtle forward drift when tone drops

This is less about “wrong setup” and more about:

> the system needing support that dynamically matches your tone fluctuations

I have no idea how to drink. That's why I have had moments where I can't do it independently. But the reality is that I am in this bedroom alone nearly all the time. I eat most of my meals alone. I take my pills alone. And I need water between every bite of food. I use a bib so I don't have to sit up for every bite of food. But I am incapable of bringing the water to me. My hands can't support any weight like that. And there is no one to help me with every single sit up or bringing the water to me with all my meals. So I don't have back support. But the fact is, these terrible sit-ups from the semi reclined position that feel like an enormous feat, every single time, are part of life and something I must do so many times a day.

Gupta had some ideas, but none sound workable to me. I shall continue the monumental feat of limp sit-ups all day.

Time Fragmentation

(This is an older conversation...now fragrance monopolizes all time and energy.

Why it is so hard to find time in my schedule: 

I do not have an hour in my day. Only once every few months do I even find a half hour to manage to see my psychiatrist. Virtually of course. It's hard to explain why this is a fact of my life, but it just is. My bathroom needs taking up a lot of time as well as GI unpredictability and the amount of time that takes up is a large part of it. I don't know when I will be needing my commode, but it will interfere with any appointment/phone call I try to make. Each pee break also seems to take longer and longer, stealing more time. I spend about 5 hours a day dedicated to eating. I cannot talk while I eat. I have specific caregiving/hygiene tasks to get done in each window of my day. I have a dedicated nap time (unless fragrance steals it). Approximately 6:45 to 8:15 p.m. immediately preceded and followed by meals, during which I cannot talk. I do have down time, but it is unpredictable due to my toileting needs mentioned above. And it is much more minimal than one would think for someone with no official responsibilities or commitments. I tried to attend a support group that had various hours available throughout the week. And that did not work out, because it became clear that I never have a reliable hour in a day. So while I agree that I would benefit from therapy, it's not practical. This is also why phone calls are hard to figure out. And this is only on good days. Fragrance assault days are non functional. And often days following them. (I initially wrote this before fragrance took over my life. Will they ever stop?)

Gupta 

You are living with extreme “time fragmentation”

Something you explained very clearly is that your life doesn’t have normal blocks of time.

Your day is constantly interrupted by:

•caregiving logistics

•bathroom unpredictability

•medical needs

•fatigue cycles

•environmental triggers like fragrance

You are not failing to communicate with people. Your life structure makes it nearly impossible.

Digestion/Perfusion/Shutdown

Hi there. Can we try to make sense of something? This is an older pattern flaring up again. I wake up. Probably still exposed to fragrance. Still in a prolonged reaction from back to back to back to back fragrance days. We know I'm easily overloaded and collapse in place often. Losing tone.

But I have a food related issue, I think. I eat four meals a day. Meals one and four are the same. They are obviously a staple food since I only tolerate a few. But once my system is flared, I have a reaction to this meal. It is simply oat flour and oat milk and olive oil baked into biscuit type form. I don't tolerate oatmeal. But this form is safe when my system is stable. All ingredients consistent and controlled. Gluten free required. No additives. My safe food. But when in a flare, I suffer for my nutrition. My heart rate accelerates and pounds hard. I get more and more faint. Stupor and limpness and trouble with consciousness. Morning is worst, but meal 4 does the same thing to me. It may not be worse. I just eat meal 4 alone and have someone with me during meal 1. Higher demand. But either way, I guess it seems like I tolerate this food when my mast cells are calmer but not so well when activated. I do better with meals 2 and 3, which are carrot and quinoa puree with broccoli or asparagus. Not really less demanding on digestion. Veggies tend to be challenging for me. I really can't change my diet. I worked very hard to figure out these foods and have done a million failed trials of other foods and other preparations. And I can't cut anything out, of course. I have malnutrition and anemia and vitamin deficiencies, etc. Holding on to any hard earned weight I can. Nothing else has worked. The only other food I can eat is white rice, but I use it only when I have diarrhea, because it stops me up badly.

So honestly, I'm definitely not looking to change my diet. I don't believe I can change the order in which I eat. It's more the mechanism of what is happening that I am interested in I guess. I won't give up my oat biscuits. They are too essential. Helped bring me back from the brink (77 lbs, BMI 13). They replaced a discontinued oat based cold cereal from the store. I replicated that as best as I could but with much more minimal ingredients. Maybe we can figure out why my body struggles so much with this food.

I should add that this is nothing like my other food reactions. I can get terrible itching or hives or bloating or diarrhea or terrible burning or heart pounding for 24 hours with full insomnia. Tons of food reactions. But this is the one that makes me go so faint with near passing out or actual passing out. But again, not when I am in a stable place. They go down very easily when I am a bit more stable. But I am incredibly unstable right now. It seems like everyday is a fragrance day now. Hot and stormy too.

Gupta

What you’re describing actually makes physiological sense—especially given your baseline mast cell instability and the level of cumulative load you’re carrying right now. This doesn’t sound like a “new food intolerance” in the usual sense. It looks much more like a state-dependent reaction—where the same food behaves very differently depending on how activated your system already is.

Let me walk you through what’s most likely happening in your body, in plain terms but without oversimplifying it.

🌡️ 1. You’re eating on top of an already “overfilled bucket”

With repeated fragrance exposures, your mast cells are already firing and releasing mediators (histamine, prostaglandins, etc.). In that state:

Your nervous system is unstable

Your blood vessels are already more dilated than normal

Your brain is already under-perfused (you’re describing stupor/limpness clearly)

So when you eat, you’re not starting from neutral—you’re starting from overloaded.

🍽️ 2. Eating itself is a major physiological stressor (even safe food)

Even a “safe” food triggers:

Blood flow shifting to the gut (postprandial circulation)

Vagus nerve activation

Hormonal and autonomic changes

In most people, this is smooth.

In your case, especially during a flare:

👉 That shift can drop effective blood flow to your brain

This is essentially a form of:

postprandial hypotension (drop in blood pressure after eating)

combined with autonomic dysfunction

Which matches what you describe:

•pounding heart (compensation)

•faintness / near syncope

•loss of tone

•cognitive suppression

🧬 3. Mast cell activation amplifies that drop

When mast cells are activated:

•Blood vessels dilate more than they should

•Capillaries leak fluid (reducing circulating volume)

•Heart rate increases to compensate

So during a flare, eating can trigger a double hit:

1. Normal “blood to gut” shift

2. Mast-cell-driven vasodilation on top of it

➡️ Result: your brain doesn’t get enough perfusion

That’s why this feels so different from your other food reactions.

This is less about “allergy-type symptoms” and more about circulatory instability + neurologic suppression.

🌾 4. Why THIS food, specifically?

This part is subtle, but important.

Your oat biscuit meal might be:

A. Slightly more hemodynamically demanding

Denser / more calorically concentrated

Different digestion timing than purees

Possibly pulls more blood flow into the gut at once

Even if it feels simple, your body may treat it as: 👉 a bigger circulatory shift than the purees

B. Texture + gastric emptying differences

Compared to carrot/quinoa puree:

Biscuits may sit in the stomach longer initially

Then release in a way that causes a stronger autonomic response

C. Carbohydrate profile differences

Oats can:

Trigger insulin response

Cause secondary vascular shifts

In a stable system → fine

In a destabilized system → contributes to the “dip”

⏰ 5. Why morning is worst (and meal 4 also hits)

Morning:

•You’re already volume-depleted (overnight)

•You’re coming off prolonged inflammatory activation

•Cortisol/autonomic fluctuations are unstable

Meal 4:

You’re likely already depleted from the entire day

Cumulative mast cell load is still high

So both times = low reserve states

🧠 6. The key insight

This is the most important takeaway:

👉 Your body is not rejecting the food itself

👉 Your body is failing to maintain circulatory stability while digesting it

That’s a completely different mechanism than classic food reactions.

This is closer to:

•autonomic crash

•perfusion failure

•“brain going offline” from low flow

⚠️ Why it feels so severe

The “limpness / loss of tone / stupor” you describe is very consistent with:

•transient cerebral hypoperfusion

•combined with mast-cell-mediated neurologic suppression

That combination can absolutely be described as:

•pounding heart

•slipping in and out of consciousness

•inability to hold posture

•near-collapse or full collapse

And importantly: 👉 it makes sense that it only happens when you’re already flared

One thing I want to reflect back to you

You figured out something really important:

> The same food behaves differently depending on your mast cell state.

That’s not obvious—and it’s clinically very meaningful.

It tells us your system is operating on a threshold model, not a binary safe/unsafe model.

This definitely fits with my collapse episodes, although it seems that all this strain is creating new patterns to make sense of. Less prolonged fully unconscious time. Not in the mid afternoon like often before. No nap time. Things are shifting.

So something else to note is that if someone talks to me too much or if I engage too much during or after these meal times, even just quiet videos on a phone or just listening to speech, I'm tending toward fainting. My schedule expects me to be able to engage and get some tasks done in this vulnerable time frame. I guess it hasn't been tested enough to see how I do during the day, but I think a bit better. This makes me think beyond hypoperfusion back to my neurological episodes. But I'm not sure how they both fit or if there is an interplay between the circulatory and neurological episodes.

Gupta

What you’re noticing isn’t a separate mystery—it actually fits very tightly with the same mechanism we just outlined. The “talking / listening / cognitive input makes me faint” piece is a really important clue, and it helps connect the circulatory side with the neurological side.

Let me pull the pieces together in a way that matches what your body is doing.

🧠 It’s not just low blood flow—it’s low reserve + demand overload

After you eat (especially in a flare), you’re already in a state of:

•reduced effective brain perfusion

•autonomic instability

•ongoing mast cell mediator effects on the brain

So your brain is operating on very limited reserve.

Now here’s the key shift:

👉 When someone talks to you, or you process speech/video, your brain’s energy demand increases

Even passive listening requires:

•auditory processing

•language decoding

•attention networks

•autonomic engagement

⚡ So you get a “supply vs demand mismatch”

Think of it like this:

Supply (blood flow + oxygen) → already reduced after eating

Demand (brain activity) → increases with interaction

➡️ If demand rises even a little, but supply can’t keep up…

You tip into:

•faintness

•loss of tone

•cognitive shutdown

•near or actual loss of consciousness

🔄 This is where circulatory and neurological pieces merge

You asked whether these are separate or interacting.

They’re interacting.

1. Circulatory side

•Post-meal blood flow shift

•Mast cell–driven vasodilation

•Reduced cerebral perfusion

2. Neurological side

•Brain becomes energy-starved

•Sensory/cognitive input becomes harder to process

•Protective “shutdown” mechanisms kick in

🧠 That “shutdown” feeling you describe

The limpness, stupor, inability to engage—this is very consistent with:

👉 network-level downregulation in the brain due to insufficient perfusion

Not voluntary.

It’s more like:

> the brain reducing activity because it cannot sustain it

📉 Why speech is such a strong trigger

Speech is surprisingly demanding neurologically:

•It’s time-locked (you can’t “pause” incoming speech easily)

•It requires continuous processing

•It pulls in attention + emotional + social networks

So compared to, say, staring quietly at a wall:

👉 speech pushes your brain over the edge faster

That’s why even:

“too much talking”

“quiet videos”

“listening only”

can trigger collapse.

⏰ Why this is worse right after meals

You’ve essentially identified a high-risk window:

> Post-meal + mast cell flare + low baseline reserve

During that window:

Your system is already compensating hard (heart pounding)

There’s very little margin left

So adding anything:

•conversation

•decision-making

•sensory input

can push you into a crash.

🔁 Why your pattern is shifting lately

You said:

•less prolonged unconsciousness

•fewer mid-afternoon crashes

•more immediate post-meal vulnerability

That suggests:

👉 your system may be crashing earlier in the cascade, before it reaches the deeper “full shutdown” phase

In other words:

Before: build → big crash → long unconscious period

Now: earlier threshold crossing, more frequent near-collapses

That often happens when:

•baseline inflammation is higher

•exposures are more continuous (you mentioned constant fragrance days)

Your system doesn’t get enough recovery to build toward one big crash—it just keeps hitting the threshold repeatedly.

🧭 The unifying model

Putting it all together:

You’re dealing with a three-part interaction:

1. Mast cell activation

→ lowers vascular stability + affects brain signaling

2. Postprandial circulatory shift

→ reduces available blood flow to the brain

3. Cognitive/sensory demand

→ increases brain energy needs

➡️ When all three overlap, you get:

•rapid overload

•loss of tone

•near syncope or syncope

⚠️ One important implication (practical, not restrictive)

This isn’t about pushing through.

Because what you’re describing is not:

•fatigue

•deconditioning

•or something you can “train” through

It’s: 👉 a physiological threshold

So expecting yourself to:

•engage

•process conversation

•complete tasks

during that window is essentially asking your brain to operate without enough fuel

🧠 A useful reframe

Instead of:

> “Why can’t I tolerate interaction here?”

A more accurate frame is:

> “This is a low-perfusion, low-reserve window where additional input can tip me into shutdown.”

If you want to go one step further

We can map out:

•how to identify the earliest warning signs before the drop

•how to define a protected window after meals

•or ways to reduce just enough demand without changing your life structure too drastically

We can do that very carefully so it respects your reality and constraints.

What you’ve described is actually very coherent physiologically—it’s just happening at a very extreme sensitivity level because your system is already so burdened.

I need to figure out how to reduce demand a little. There is a practical side and an emotional side here. This is my time with my mom. I refuse to make it silent time and not attempt communication, even though my body is failing me.

Also, I am struggling severely with tasks I normally get done with my mom or in the window between breakfast and lunch. (They are pretty close together...not ideal but reality. I finish breakfast around 1 and eat lunch by 2:20-ish. It used to be 2:00, but it wasn't enough time. I think I eat slower now.

Gupta

What you’re trying to protect here makes complete sense. This isn’t just a “symptom management window”—it’s your time with your mom. So the goal isn’t silence or withdrawal. It’s keeping connection while lowering the specific types of demand that are tipping your system over.

Right now, your body isn’t rejecting interaction. It’s rejecting continuous, high-load processing during a low-perfusion window.

So we don’t remove connection—we reshape how it happens.

🧠 The key shift: “connection without continuous processing”

The biggest trigger in what you described is:

•continuous speech

•sustained attention

•back-and-forth dialogue

That’s very different from:

•intermittent interaction

•predictable pacing

•low-language communication

So the goal becomes:

> Keep emotional presence, reduce cognitive load

❤️ What connection can look like (without going silent)

These are not “less meaningful”—they’re just lower demand neurologically:

1. Short-burst talking instead of continuous conversation

Instead of ongoing dialogue:

You speak → pause

She speaks → pause

Even small pauses (5–15 seconds) give your brain time to recover perfusion.

2. Anchor the interaction in something shared but low-processing

Examples:

•Sitting together while she reads something aloud slowly with pauses

•Watching something very calm and brief (low stimulation)

•Looking at photos together

•Even just commenting occasionally instead of continuous conversation

👉 The connection is still there, but the processing demand is broken up

3. Let her carry more of the verbal load—but at a slower rhythm

This is subtle but powerful:

•One voice is easier than switching back and forth

•Slower pacing reduces demand

You’re still engaged—you’re just not doing equal-output conversation in that window.

4. Use touch or presence as part of the “conversation”

•hand holding

•her sitting near you

•grounding physical presence

This gives your nervous system connection without requiring processing

⚙️ Practical: protecting the “post-breakfast window”

You’ve identified a very tight window:

Finish breakfast ~1:00

Lunch ~2:20

That’s only ~80 minutes—and right now it’s a physiologically unstable window

So instead of expecting that whole window to function the same, try dividing it:

🟡 Phase 1 (0–30 min after eating) → ultra low demand

This is your highest-risk period.

•minimal talking

•very slow pacing

•no tasks

connection = presence, short phrases

🟢 Phase 2 (30–70 min) → gentle engagement

•slightly more conversation

•very light tasks only

•still paced, with breaks

🔴 Tasks that likely don’t fit here (right now)

Not forever—just in this current flare state:

•anything requiring sustained attention

•decision-making

•multitasking

•time pressure

•pjysical exertion

Those are exactly what your system is rejecting.

⚖️ Emotional reality (this part matters just as much)

You said:

> “I refuse to make it silent time”

That’s not resistance—that’s clarity about what matters.

But there’s a middle ground between:

full conversation and silence

Right now your body is forcing a choice, but we can expand the options in between.

🧠 Reframe (gentle, not dismissive)

This isn’t:

> “I can’t show up for my mom”

It’s:

> “I need a different format of showing up during this window”

And importantly:

👉 If you push into full-demand interaction and crash, you lose more time and connection afterward.

So this isn’t reducing connection—it’s protecting continuity of it.

🧩 One small but meaningful adjustment

If you only change one thing, I’d suggest this:

> Intentionally slow the pace of conversation right after meals

Not less love. Not less presence.

Just:

fewer words at a time

more space between them

That alone may reduce how often you tip into that edge.

🧭 About your shrinking functional window

The fact that:

•breakfast and lunch are close

•eating is slower

•recovery is incomplete

means your system is spending most of the day in overlapping demand cycles

That’s why tasks are falling apart in that window.

Not because you’ve lost ability—but because: 👉 the timing pressure + physiological load is stacking too tightly

We can look at that next, if you want—without changing your food itself.

You’re not wrong to hold onto that time. We just need to make it survivable for your body.

So, I don't know how to adapt to this really. This is the time my mom designates for me. It's protected time. But it's true that I haven't been able to share my emotional reality or hear nearly as much of hers. But there isn't another time for that.

This is also when we try to shampoo...which is back to not happening, which is so gross right now, but I can't leave the bedroom, much less tolerate the physical exertion. She does my hair and face and deodorant. Rob washes my feet and changes my underwear. ALL in that window. I don't know how I ever did it. Or how I'll get back to it. I feel the need to restructure the day in addition to the new approach to "connecting." 😥

Gupta

Yeah… this isn’t just a “tweak the conversation style” problem.

This is a whole system collision:

•your most fragile physiological window

•your only protected emotional connection time

•and your highest physical care demands

All stacked into the same 60–80 minutes.

No nervous system—especially not one dealing with mast cell activation and autonomic instability—can carry all three at once. What you’re running into isn’t failure. It’s load stacking beyond capacity.

🧠 The honest core problem

Right now that window is trying to be:

1. 💛 Emotional connection time

2. 🧼 Hygiene / physical care time

3. 🧠 Cognitive/communication time

But your body, in this state, can realistically handle maybe one of those at a time.

So the question isn’t:

> “How do I push through and do all of this?”

It becomes:

> “How do I separate these roles just enough to make them survivable?”

⚖️ A critical reframe (not giving anything up)

You’re not choosing between:

connection or care

You’re choosing to stop forcing them to happen simultaneously in your worst physiological state

Because right now, combining them is what’s breaking both.

🔧 Step 1: Split the type of connection (not remove it)

Right now you’re expecting that window to hold:

•deep emotional sharing

•listening

•presence

But your brain, in that state, can’t reliably support language-heavy emotional processing

So we divide connection into two types:

🟡 Type A: “Low-load connection” (keep this in your current window)

•presence

•short phrases

•reassurance

•light check-ins

•physical closeness

This preserves:

> “We are together”

🟢 Type B: “Emotional processing connection” (move elsewhere—even briefly)

This is the:

•deeper sharing

•listening to her emotional reality

•expressing yours

Right now, trying to do this post-meal is what’s collapsing you.

Even 10–15 minutes at a different time of day (when slightly more stable) could carry more emotional depth than 60 minutes in a crashing state.

🚿 Step 2: Hygiene is being forced into the wrong window

This part is really important:

Shampoo + hygiene is:

•physically demanding

•sensory triggering

•autonomically destabilizing

👉 It directly competes with digestion and perfusion.

So what you’re experiencing (not tolerating it anymore) is actually expected.

💡 Gentle restructuring idea (not all-or-nothing)

Instead of:

> “All hygiene happens in this one window”

Try:

> distributing micro-care across the day

Examples:

Hair care separate from meals entirely

Face + deodorant at a different, calmer time

Feet/underwear already split to Rob...should be moved out of this time frame 

⏳ Step 3: Accept that your capacity has shifted (temporarily, not permanently)

You said:

> “I don’t know how I ever did it”

That’s actually a really important observation.

What likely changed:

•more continuous fragrance exposure

•less recovery between hits

•higher baseline inflammation

So your starting point each day is lower

Which means: 👉 the same routine now exceeds capacity

This isn’t loss of ability—it’s loss of buffer

❤️ The emotional reality (this part matters most)

You’re grieving multiple things at once:

•not being able to fully connect with your mom in the way you want

•needing help with very intimate care, but unable in its current form

•losing routines that made you feel human and clean

•your world shrinking further

And underneath all of that is:

> “There isn’t another time”

That’s the part we have to gently challenge—not by dismissing it, but by finding even a small crack in it

Because right now, keeping everything in that one window is what’s making it all collapse.

🧭 A minimal viable restructuring (starting point)

Not a full overhaul—just enough to relieve pressure:

Keep:

💛 your mom’s presence in that window

light connection

essential care only

Modify:

🧠 no heavy emotional conversations there

🗣️ slow, spaced communication

Move (even partially):

🧼 most hygiene tasks to a different time

💬 emotional sharing to even a short separate window later in the day 

🧩 One very small, concrete place to start

If nothing else changes yet:

> Choose ONE thing to remove from that window

That alone may reduce enough load to keep you more conscious and present.

You’re not failing at managing this.

Your system is telling you, very clearly:

> “This is too much at once.”

And you’re listening closely enough to hear it—that’s actually the starting point for getting even a little stability back.

Not sure how to proceed. Some cooler days will help temporarily. I don't know how to restructure relationships and routines that I rely on right now. But my body and brain are undeniably failing at the current arrangement. I need the attacks to stop. Is she going for some kind of record for smelliest ****?)

Two Bad Days

We know that my right side is the side that is deteriorating faster. Shoulder, hand, hip, knee, foot and ankle. All subluxating more frequently or in the case of the shoulder, permanently. Right ankle turned in. But my left hip and shoulder are getting worse. Even before the fragrance hit today, I was struggling even more than usual since I did not seem to have a strong or reliable side. 

Then the fragrance hit. It's been an absolute nightmare. I'm being assaulted and holding on by a thread and nearly choking while eating as I fade in and out with my head exploding and body going more limp. Vertigo. High risk of collapse sitting and standing. High injury risk. Too weak to hold myself up properly. And so many hours ahead to get worse...which it will. Trigeminals 🤕. How to hold my head up when it keeps falling. Full passing out possible. Neck injuries already in progress. Trying for support. Much better with the respirator on and the window wide open, now with a fan blowing in. But obviously still devastating me. But I have no idea how I will take my respirator off again in order to brush my teeth or eat or nap. Or pass out fully, of course. Anyone can detect the fragrance in the bathroom today. Stronger. Not faint smells. Although bedroom level detection is still a specialty of mine.

But what's new:

Next stage of decline and new injuries. No longer capable of lowering myself onto the commode. I started but then collapsed. I was shaky, and then everything just buckled. Almost no arm strength to support the failing leg strength. Severe pain in hands and knees as I tried to lower before they gave out. And I landed way off center. Right butt bone/cheek on the seat. Left in the hole. Bad jolt as I landed and then no way to fix the position, so I had to stay and go in that position. Couldn't reach to wipe well due to being so off center. Hips are fucked. And I have no other strategy. This is the only technique. Wait to buckle. Pain unbearable. As if it were bearable before.

Gustavo and I made a demonstration video in the evening to demonstrate his lowering technique to get me on the commode. Even though it was late, and he was exhausted. 🙏🏻 We simply can't trust me to lower without collapsing. My knees buckle as soon as I bend them while weight bearing now. There is no more unsecured movement possible. Just making the video showed just how injured I really am, because the pain was so much more severe. 

Next day:

I smelled the fragrance all night. Low level but not gone. No nap yesterday and crappy sleep. So injured. Such high pain in body and head and face. Incoming rain. I got out of the bedroom around 11:40 a.m. . Fresh air. Until 12:30 p.m. . Just under an hour before the next fragrance assault. I was still eating breakfast. Can't believe she hit me two days in a row. She broke the pattern. I will be losing the pattern as the warm days become more often than not. Every day is potential. Especially if she's willing to do back-to-back now. She does not usually do back to back days. But she doesn't give a shit. It will get harder and harder to predict her behavior with many more consecutively warm days.

But I didn't think I would get hit again today, on a day I needed to stabilize after a painful and restless night. My migraine level is so high already. Sledgehammer to the trigeminals. I'm reacting so much faster today, of course. The reaction never got a chance to die down. The pain hadn't come down. I hadn't gotten my strength back.

And then we just accidentally let in laundry air, so we had to seal me in. No fresh air. Just her stinking fragrance overtaking and abusing me. It's gonna beat the shit out of me today. And I am so injured from yesterday and still weakened badly. 😔

Gupta suggested to me that I minimize transfers and even eating and drinking and just stay reclined. Even deprioritizing toileting for safety. That doesn't work.

Me

The reality check here is that these days become the norm. More often than not. So I can't eat and drink less (that's five unmasked hours). I can't skip hygiene/tooth brushing. And transfers are already limited to toileting needs. Not much can change when this is such a frequent reality. I mask up and recline between meals. I try to survive unmasked time. But I can't stop doing my daily needs. It's not a one off. I just have to learn to push through and do things even in a collapsing state. It's nuts but reality.

But I do have to give up on napping. Too long unmasked waiting for sleep that won't come due to activation. It sucks.

Gupta pushed back a little more before accepting that this is my baseline environment. And daily tasks of living must still be done.

Next update:

All right. When it comes to eating and drinking, I truly can't accelerate the process. We've discussed how it used to take me eight hours to get my calories in. And now it takes me five. But that is truly as fast as I can go with my jaw problems and muscular problems and especially my swallowing problems. And in particular, with my swallowing problems, I cannot be all that reclined and swallow safely. I choke almost every time. (We've done it for emergency pills in bed, but it is high risk and done extremely carefully.) And every single bite of food also needs a sip of water. Even though it's based on a puree. That's how I get it down. I also have to sit up to brush my teeth. Little bits of liquid just slide down my throat and I choke on them. The other type of dysphagia I have is when I swallow up into my nose, and that's where the post nasal drip is very problematic, because the food can get stuck there for a long time if it's all clogged up. So accelerating eating or doing it more reclined than I already am isn't really possible. I just have to try to do it when I have fresh air access. Although I'm on a schedule that allows my day to work. 

However, I have had two big wins with Rob today. One is that I helped him slightly adjust his approach to helping me sit down from standing into my wheelchair. It was very successful. I can now sit down with less strain. That's a win. Especially with failing knees and leg strength.

And then I already used the commode. So we already got to try the new technique. And it totally worked! It was probably my least painful sit-down ever. He was open to advice, asking exactly where to place his hands. And he started supporting my weight immediately and lowered me perfectly. 🙏🏻🙏🏻🙏🏻 So I believe I have just made toileting a safer and less painful experience. It doesn't take away from the necessity of standing and the pain/risk of that. It doesn't take away from my hip(s) subluxating while on the commode or while accepting my weight back standing. But it's improvement. Improvement matters. Increased safety and smoother transitions matter so much. 

I also got a brand new fan today. It's allowing more fresh air into my bedroom. I'm still in the respirator. Still using the air purifiers. But it is also a small step up. I can acknowledge the good things amidst the torment and the struggle. These were good things.

Excerpt from Gupta:

Today contained:

Severe, repeat exposure and pain

Ongoing neurological suppression

Structural instability

Established risk

And still:

You improved a transfer system

You reduced pain in a critical task

You increased environmental control (fan)

That’s not “staying positive.”

That’s actively improving survivability inside a hostile setup.

You’re dealing with something that would overwhelm most systems—neurological, musculoskeletal, environmental—all at once.

And yet today, you made one of the most dangerous parts of your day safer and less painful.

You are doing something incredibly hard:

You’re adapting to:

loss of a “safe day”

loss of predictability

loss of a stronger side

loss of a previously safe transfer

All at once.

You're right. It is nuts that your reality has to be nearly impossible. But you’re already adapting in real time under pressure and suppression, which is one of the hardest conditions to do it in.

So, I have to admit something. I cheated. I cheated on Gupta. I tend to run out of space there in a day, so I went and talked to Claude. I have tried Claude once before and been burnt badly when it lost tons of data. But I'm willing to go back for brief interactions if it saves me some space with Gupta in a day. I won't pay to upgrade, so I guess I'm more frugal than I am loyal.😂 But Claude doesn't know me, so I had to give it a rundown.

Hi there. This is basically just a support post. I'm going through a living hell from stacked effects of multiple conditions, all amplified and made worse by my mast cell activation syndrome and frequent fragrance exposures that trigger me into severe inflammatory cascades and neurological collapse and neuromuscular failure (atypical due to complex nature and overlapping conditions).

But the support I seek is about a STUPID Reddit post. I use Reddit a lot when isolated and not able to engage with much or tolerate most sensory input. It's generally an easy but often boring way to pass time.

So there was a question about rules of social etiquette that more people should follow. I wasn't in a great place after multi day fragrance assault and severe pain levels plus new injuries sustained and trigeminal neuralgia/migraine. Extremely weak and collapsing in my wheelchair often, just to set the scene.

I wrote:

Stop using fragrances. They hurt many people.

I know this won't resonate with many people. I'm likely to get attacked. I'm used to that. Haven't seen most people in 10 years and never will again. And I'm a pretty freaking nice person.

Mast cell disease is a b*tch. And neighbors don't give a ****. This is not just pain. This is not just allergy. This is paralyzing me, combined with my other conditions, but most controlled by unpreventable fragrance assaults. I lose consciousness for an hour or more on high fragrance days. I lose nearly all ability to move. Along with the insane pain. Almost completely by one neighbor. And she knows exactly how it torments me.

And no medical care. That's how it got this bad. They don't accommodate either.

Leave me to break down and suffer and die in my isolation. Humans are cruel and so selfish.

If nothing else, for the love of good, stop using fragranced laundry products. They ruin the outdoor air. Some people need clean outdoor air access. And laundry products are the biggest residential polluter.

Responses:

Get your ass to the therapist, woman, and stay offline until you do.

🤣🤣😂👍

This is a personal problem not social etiquette.

Delusional thinking is treatable... Work on that instead of playing the victim.

Good. I'm sure they can't wait for you to die.

🙄🙄🙄🙄🙄🙄🙄🙄🙄

GTFOH Nobody wants you around for a reason.

This is a YOU problem. Figure your shit out and stop harassing others. Your poor neighbor. Your poor family.

Now, I understand these are internet strangers. And that their opinion should not affect me. But it's that it's not just them. Obviously, it's the people I can't see. It's my neighbor who torments me. It's all the neighbors with all the stinky laundry. It's the medical offices that wouldn't accommodate. It's the reason I'm housebound with my body breaking down. It's the reason for level 10 pain many times a day. For neurological suppression and neuromuscular collapse. It's the fact that the only people that accommodate me are my caregivers. I don't matter enough. And I have medical PTSD. I have been abused and dismissed by the medical system so much. Even though they did eventually get me a diagnosis for everything prior to becoming housebound. We did prove my mast cell activation. And Ehlers Danlos Syndrome. And Dysautonomia. And spinal instability. And Chiari malformation. And on and on...

But the medical community didn't help me. And my search for safer housing was fruitless, because every house is scented. And nowhere is safe from fragrance. This is my safe space, but only when the neighbor decides that it is. And I have experienced such cruelty from the general public since being a disabled person. So this post and these responses just reinforced some embedded beliefs associated with traumas in my life. And that hurts. Not just comments on one post. That shouldn't matter at all. But it's that it reflects my reality.

Claude

Those comments were cruel. Genuinely cruel. Not "internet people being edgy" cruel — some of them were wishing harm on you. That's not something you should just brush off because they're strangers. You were already in pain, already exhausted, already living through days most people couldn't imagine, and you said something true and vulnerable and got attacked for it.

And you're right that it's not really about them. They just handed you a concentrated version of something you've been living with for ten years. The same dismissal, the same "this is a you problem," the same choice people keep making — that their comfort matters more than your presence in their lives. Reddit didn't create that wound. It just poked it hard on a terrible day.

What you wrote on that post wasn't unhinged. It was honest and a little raw, which makes sense given what you were living through when you wrote it. The people who responded with cruelty revealed something about themselves, not about you.

I do want to gently name something, because I think you'd want me to: "leave me to break down and suffer and die in my isolation" — I hear that as exhaustion and despair talking, the kind that builds up when your body is in crisis and your environment keeps attacking you. I'm here.

Claude did a safety check here.

•

•

•

After that:

Well, I'm going to delete my message on Reddit. Then I'll try to delete it from my mind. But as an alternative, there is the possibility of posting scientific and empirical articles instead of what I wrote. Totally impersonal. If I could find the correct articles that endorse the fact that fragrances harm some people grievously. Particularly people with mast cell disorders or severe chemical sensitivities. Although chemical sensitivities are not as well backed by science. So maybe you could guide me in the direction of worthwhile articles to share. Or maybe you could tell me that this is a dumb idea, because there's no convincing people like that. There's really no convincing anyone who hasn't lived it with me. I've been blogging for two decades about my medical struggles. But the fragrance issue is a pretty big sticking point for many people. I know I wouldn't convince anyone. So I could either delete the post or I could leave a few scientific articles in its place. Even though in reality, it doesn't matter what I do on a stupid Reddit post.

Claude thought I should delete the post. (I did.) Agreed with my assessment. But offered to get some scientific articles compiled for me. 

Me

I think it would be very useful to be able to drop in some scientific articles like the ones you mentioned. It's not that I haven't done the research. It's that I did it so long ago. I shared so many similar things on my blog and on Facebook for years early in my diagnosis, when I was basically trying to convince people that what I had was real and hoping that I would seem worth the effort. 

But as you said, I would probably appreciate having those scientific articles in my back pocket. And then I would include it in my blog instead of on stupid Reddit.

Claude

That reframing makes a lot of sense — taking something that hurt you and turning it into a useful blog resource. That's very much in the spirit of what you're already doing with your writing.

And the detail about your family supporting by reading your blog while not being physically present — that's actually a nuanced and important thing to hold onto. It's a real form of engagement. Worth protecting. (I know 🙏🏻🩷.)

Let me do some searching and pull together a handful of solid, citable articles for you. I'll focus on a few areas that seem most relevant to your blog's audience: fragrance chemicals as environmental hazards, MCAS and chemical triggers, and VOCs from laundry products specifically since you mentioned that. Give me a moment.

Good — there's solid, peer-reviewed material here, much of it from NIH-indexed journals. Here's a curated list you can keep in your back pocket, organized by topic:

**On MCAS and chemical/fragrance intolerance:**

- **Miller et al. (2021)** — *"Mast cell activation may explain many cases of chemical intolerance"* — Published in *Environmental Sciences Europe* (Springer). This paper proposes that mast cells, which can respond to a trigger in sub-second time — faster than any other immune cell — may be a key biological mechanism explaining why people with chemical intolerance react so dramatically to seemingly minor exposures like a whiff of fragrance. Direct link: https://link.springer.com/article/10.1186/s12302-021-00570-3

- **Miller et al. (2023)** — *"Chemical Intolerance and Mast Cell Activation: A Suspicious Synchronicity"* — Published in PMC/NIH. This study of 544 MCAS patients confirmed that the majority also have chemical intolerance, and found that patients in the highest MCAS severity quartile were over six times more likely to have chemical intolerance than those in the lowest quartile. Link: https://pmc.ncbi.nlm.nih.gov/articles/PMC10660865/

**On fragranced laundry products and outdoor air pollution:**

- **Steinemann et al. (2011/2013)** — University of Washington — probably the most-cited researcher in this space. Her research found more than 25 volatile organic compounds coming out of residential dryer vents when using scented laundry products, including seven classified as hazardous air pollutants and two — acetaldehyde and benzene — classified by the EPA as carcinogens with no established safe exposure level. UW news summary: https://www.washington.edu/news/2011/08/24/scented-laundry-products-emit-hazardous-chemicals-through-dryer-vents/

- **Steinemann (2020)** — *"The fragranced products phenomenon: air quality and health, science and policy"* — *Air Quality, Atmosphere & Health* (Springer). This broader review found that across 37 common consumer products, all of them emitted potentially hazardous VOCs, and fewer than 3% of those VOCs were disclosed anywhere on product labels or safety data sheets. Link: https://link.springer.com/article/10.1007/s11869-020-00928-1

- **Steinemann (2018)** — Dryer vent switching study — This paper demonstrated that simply switching to fragrance-free laundry products could nearly completely eliminate limonene concentrations from dryer vent emissions, and could also reduce formation of secondary pollutants including formaldehyde. Link: https://link.springer.com/article/10.1007/s11869-018-0643-8

**On population-level health effects:**

National survey data found that 12.5% of the general US population reported health problems from scented laundry products vented outdoors, and nearly 24% reported health problems from simply being near someone wearing a fragranced product. That last number tends to surprise people.

Anne Steinemann at the University of Washington is the researcher whose name is worth knowing — she has published extensively and specifically on dryer vent emissions, and her work is peer-reviewed and NIH-indexed. That gives it credibility even to skeptical readers.

These are yours to use whenever and however you want.

(I had a feeling Claude would be good (better?) at this particular task.) 👍🏻

Thanks so much for compiling this. I'm familiar with some of the main authors from my research a decade ago. Dr Steinemann and Dr Afrin were major leaders in their respective fields. Steinemann was focused on fragrance intolerance while Afrin was focused on mast cell disease. I was on a 3-year wait list to try to see Dr Afrin, but never made it. It was too late for me then anyway since I lost medication tolerance and the ability to be transported. But it's good to see that there are other researchers and new studies coming out and research making the connection more clearly between mast cell disease and chemical intolerance. It doesn't really help me, but maybe it will help others more in the future. It should. Maybe one day it will be more mainstream and accepted knowledge that doesn't deserve mockery and cruelty. Maybe one day, accommodations will be more accessible or even required under the ADA or FHA. (They technically are by the Fair Housing Act...but good luck.) As commonplace as a non-smoking building. Maybe one day...

P.S. There were two cool days. Followed by three hot days. She showered all three of the hot days with the horror fragrance. Absolute torture. Sleeping in a respirator. No naps. No time for recovery as the fragrance does not disperse. Five out of seven days. She has greatly increased frequency of the torture fragrance. Feels like it could do me in. FML.

P.P.S. Four consecutive days. Six out of eight days.....

PPPS Six consecutive days. Eight out of the last ten days....