The Beast

Isy / August 27, 2025 / activity, ANS and fight-or-flight, CRPS knock-on effects, loved ones, perspective, self-care, survival

One of the characteristics of CRPS and some other longstanding brain-driven pain conditions is the occasional personality transplants which, especially combined with memory-holes and perceptual shifts, can really do a number on relationships. This situation is called the Beast. Medically, it’s considered part of the territory.

I’ve been absolutely smug about my aability to stay away from the Beast. Since regular psychotherapy is part of the gold standard of treatment for CRPS, I’ve prioritized psych care — from professionals who have a good understanding of trauma and PTSD, since actual specialists in central pain are so rare, and trauma/PTSD is a good model to start from. That care hasn’t been possible for most of the past 5 months, and I’m taking stock of how much I’ve lost in that time, now that I’m back on the schedule.

I can count on 3 fingers (now 4) the times I’ve been the Beast in ~21 years. (I’m fuzzy on my first ~4 years of illness. It was a blur.) The most recent of those times was due to a neurotoxic exposure. One was when I lived in a mold infestation I hadn’t mitigated yet. One was during a particularly hectic trauma period. The current one was after I decided to make an extended, extravagant physical effort in not-very-safe air. I really thought I could pull it off, and just rest afterwards.

But these are reasons, not excuses. I hurt people who didn’t have it coming at all. I injured relationships I care about deeply and intend to protect. Today’s event cuts particularly deep.

“Why would you do that?” is an unanswerable question. If you don’t have this shit disease, it can’t be explained. All I know is that I felt myself being pulled under, not recognizing fractured memory and wacked perceptions. I grabbed for a rope. Didn’t think what it was attached to, because I thought I was drowning.

Mind you (adds that inveterate shit, Sarcastic Sister), my feelings are such that I’d rather be dead than hurt my loved ones. But this is not the time to say that, because it makes no sense from the outside, in light of what they just experienced from me.

So… diligent psychoemotional tune-ups, reasonable pacing of activity, and a safe environment are not at all optional. That rubric is my best insurance against the Beast. What I know from seeing my long-term survivor cohort is that there’s no guarantee I’ll be able to avoid the Beast forever. So, I’m wrestling with this reality and not really wanting to be here for my life. (“I’d rather be dead than feel this way” was a state my late BiL and I could bond over.) Many of my fellow CRPSers know the feeling, and it eases my soul ever so slightly to know it’s part of this disease experience, and not because I’ve actually become evil.

I’ve done what I can for now. I’m off home for meditation time, if I can, and a familiar show if I can’t. I have to remember how to rest and how to push myself no harder than is good for me. I have to take recuperation very seriously and basically expect nothing from myself for a week. I have to manage this terrible storm of feelings in the absence of a stable central nervous/ endocrine system. I hope to have the chance to rebuild a couple of relationships. We’ll see if that’s do-able. Fun times.

I’m looking for some more positive message to turn towards or even something to lighten this a little, since the point of this blog is “living anyway” in spite of what this craptastic disease does to people. The only thing I’ve got to offer right now is the passage of time and the hope of some recovery… within the context of this horror-show snowballing around me, around us all.

Where to start? Head to toe

Isy / April 30, 2025 / basics, care team, definitions & descriptions, Head, Head to toe

I’m going to give organizing my mental database a try here. The aim is to pick one broad topic each month and cycle through them in a year. I’m doing it the way nurses and doctors are taught to do it: head to toe.

Physical assessments have to go from head to toe, every time, without exception. This makes use of the brain’s basic tendency to work in patterns. If you assess every patient from head to toe, every time, then the variances are easier to find (because your brain is so dialed into what to expect at that point in the pattern) and it’s a lot easier to get to a sound differential diagnosis.

If I go to the doctor with a sore knee, the doctor is still going to notice my level of consciousness, attachment to or detachment from my environment, track my gaze and whether the sides of my face are more or less equal, differentiate how much of my limp is because my knee hurts and whether any of it is because my balance is off (all of that is about the brain), notice my breathing pattern (lungs), become aware of blood- flow problems (heart) showing up in my skin, and checking to see if I’m “splinting” or bracing against pain or weakness in my abdomen (g.i/g.u. systems) and hips (ortho, right above the knee).

An experienced doctor does most of this in 1 to 3 seconds, because it’s a head- to- toe assessment every single time and they can just let their pattern-matching brain (which is powerful and primal) take care of it and send up a flag to their conscious mind if anything is abnormal.

The medical term for “head to toe” is “cephalocaudal”, which literally means “head to tail”… but humans don’t have much in the way of tails, and our bodies keep going for quite a ways after them. I’d love to hear from my Latin-knowledgeable readers what the term should be!

I’m recovering from a migraine, which is very on-topic, but I’m not yet up to writing much. I thought I’d introduce this new structure, which I hope will be a bit simpler and less overwhelming than “what am I wrestling with right now that I could usefully write about?” There’s so much to write about, it magnifies the intransigence of the empty page. (Writers know what that’s like.)

A head.

Care of Spines & CRPS

Isy / April 2, 2025 / activity, basics, brain care, CRPS knock-on effects, injuries & surgeries, radical presence/radical acceptance, self-care, tools and techniques

This is about the messy intersection of CRPS & the mechanical aspects of central nervous system dysfunction, and dealing with those effects.

I’m writing through the waunnng, waunnng, waunnng of a ringing headache. I’m hoping that if I hydrate, urinate, and (carefully) ambulate enough, it’ll pass faster. We shall see. Meantime, I’ll do my best to pass on some useful info.

The brain and spine are supposed to float in cerebrospinal fluid. We are supposed to stay hydrated enough to keep those sensitive tissues from grounding out.

We have 2 kidneys – each one capable of filtering twice the water we actually need – as a practical accommodation for the fact that, throughout history, most water was filthy and needed lots of filtering.

We have 4 times the kidney power we need for a busy, messy lifetime. We’re supposed to use them! The more we use them, the healthier they can stay. They love to do their job.

When we’re properly hydrated, our brains and spines can float comfortably in their spaces. When they float comfortably, they have plenty of shock absorption protecting them.

Spinal care

Dr Faye Weinstein taught me an important part of brain & spine care.

I had too little cartilage in my knees, so I had developed the habit of dropping into chairs instead of using my legs to lower myself neatly.

She hated that. She visibly flinched, and one day she finally cried out in audible distress, “Stop doing that!”

I stopped doing that.

Just as she had predicted, my baseline level of misery became less.

Once I was out of the habit of dropping into chairs, then, when I did it again, it caused headaches and sometimes back pain (depending on my hydration, of course). I was no longer used to enduring this as part of my daily quorum of yuk.

That was (checks watch) over 10 years ago. My brain and spine, oddly enough, haven’t gotten any younger since then.

Yesterday (after a couple of days of being “too busy” to hydrate properly), while I was turning to admire something across the street (a boat or a building; I forget which)… I stepped off a step I hadn’t noticed. One step down, caught myself, barely stumbled, no harm done. Massaged my neck a bit, to ease the slight jamming on one side. In my formerly healthy system, that would have been that. Probably would have forgotten about it instantly.

But now is different.

It took 10 minutes for the icky feeling to set in at my low back and back of head. It took a little over 2 hours for the whole brain-fog and uncontrolled body pain to take hold. Chronic CRPS really is wired into the whole neurological system, and one of the hallmarks is how the spine takes on an anti-life of its own in the face of any signs of disrespect.

Clearly, my spine felt seriously disrespected.

Content warning – skip this description if you’re squeamish about pain:

We know that I have no effective pain control left to me, with genetic tweaks making narcotics disgusting (they make the pain worse, cause untreatable nausea, and trigger horrific mood swings), and mast-cell activation making NSAIDS unbearable (they cause a soft-tissue-wide inflammatory pain, making it feel like shards of hot glass are hammered into all my cells).

So, how to approach this?

There’s a super-concentrated lemon balm extract that helps calm down inflamed nerves. Lemon balm has been used to calm nerve inflammation & pain for, approximate thousands of years.

Since all the nerves coming out of my spine are feeling very hot right now, I’m taking that about every 8 hours.

Note: check this against your meds, especially with GABAnergics. Ask your pharmacist to check their standard herb-drug interaction charts.

Pain salve on my spine and up my neck before bed, and also on arms/ shoulders and hips once I tried to sleep, helped noticeably.

It was a rocky night, but I’ve been getting as much water down as my tummy will tolerate and, now that my kidneys have been flushed 3 times, the headache is noticeably easing.

Conclusion

We can’t be alert every second. Our senses are so distracting at the best of times. Finding ways to manage these impacts is unspeakably important.

Long-term pain patients tend to get self-concerned to a degree that could be obnoxious normally, but it’s a legitimate self-care attribute in a life where one wrong move or one wrong exposure can destroy weeks or months of work.

Mouse brain neurons, two pairs, stained flame yellow against red background — Image by neurollero on flickr, CC share-alike attribution license.

One benefit of this self-attention is learning how to manage and mitigate the problems that arise by catching them early, and sharing the info in the hope that it’ll do some other painee or their caretakers some good. We have to learn from each other. Nobody else is as qualified.

It gets weird in here

Isy / March 14, 2025March 14, 2025 / adaptation, brainiac, care team, critical thinking, cultural context, opinion, perspective, radical presence/radical acceptance

I was chatting with a close friend about a week ago. He’s placed to be on top of current events with a depth and nuance that my vomit reflex can’t stand. We had an interesting conversation which was mostly me chirping, “But what about…?” And him giving me a really good update on stuff I’d never be able to stay upright long enough to research.

My brain was twinkling away on the incoming tide, sorting the info and soaking it into the correct metaphorical tide-pools and littorals.

I soon realized that, though I was sorting words coming in, I was having a terrible time getting words out. I didn’t realize, until that moment, just how completely that parsing a thought may feel verbal, but might not be.

I thought I was wording just fine as I thought, “okay… this goes here with news ownership; this goes there with political gamesmanship from Brand X; this relates both to Brand Y and legal process” and so on.

On the outward flow, all I could get going was along the lines of, “so, uh, how’s the… thingy… you know, from… what’s-his-name…” and I realized I sounded immeasurably more mentally inept than I felt.

I wanted to say, “look, I’m still in here and I’m taking in everything you say. I just can’t operate the outgoing current right now and my word capturing is going great, but my word finding seems to be underwater.” I could not fund the words, of course.

It’s been grimly fascinating to me to find the many ways a brain can go off-line in bits & pieces, and how my mental activity and neurological activity have these unthinkably complex ways of associating and dis-associating within themselves and between each other.

Everyone’s brain is linked up in completely unique ways. Just imagine what it would be like to work with people who could relate exactly what is and isn’t working and when. It’d set off such an explosion in the advancement of knowledge that.. wow.

A pointless note of wistful longing

It’s a real pity I can’t handle any schooling, let alone medical school, because this is exactly what neurologists need to know about to make their lives – and, boy howdy, ours! – a lot more useful and interesting.

As it is, patients are considered inherently unreliable in the medical mind, and, although that’s extremely insulting, it’s not crazy within physician context: the precision of thought and accuracy of terminology is rarely there, because so much training goes into commanding the information the way a doctor does.

Conversely, it’s adapting through a traumatizing cascade of brutal experiences that creates a skilful and well- informed patient. Training that’s so high-level it amounts to nosebleed seats for one; autodidacticism that makes Richard Francis Burton look like a playboy (oh, wait..) for the other. (When I can find someone who’s as brilliant an autodidact but not a moral negative, I’ll revise that sentence.)

It really is a different language and these two rather fragile mind-sets have trouble reaching across the cultural gap. (Anyone who thinks doctors aren’t fragile should just try correcting a few. It can get rough.)

I think the ratio of truly secure doctors to the rest is about the same as truly adept patients: they are definitely around, but can be hard to identify even when you’ve got one. It takes hard work and a lot of fearless honesty in both cases.

Buckling on my helmet. I’ll get it from both sides now.

The onus winds up being on the traumatized patient, who usually has more clock-time to prepare for the visit. The doctor has to turn around and deal with someone equally intense in 2-7 minutes, so they have to stay mentally free to do so.

Yes, let’s hear it again for corporate medicine and its unholy offspring. So efficient, such a great use of limited resources… not.

There isn’t (yet) a cultural context in the field for cross-training as a patient and as any sort of licensed practitioner. That’s the key deficit.

Practioners get culturally demoted when they become patients (which is disgusting, but predictable in such a heirarchy) and patients get shoved into a little cultural pocket for things that fall between weird and interesting without fully qualifying as either.

Fun, eh? It’s one stellar example of the waste in the system.

With a pet & chronic illness

Isy / March 5, 2025 / CRPS knock-on effects, documentation, food allergies, imp-possible, moving/traveling, perspective, radical presence/radical acceptance, self-care, survival, tips on traveling with pain

This is a long one. Grab something to drink and put your feet up, if you want to…

In the wildly unlikely event that, say, a vulnerable American citizen felt moved to respect the anti-immigration feeling and return to the lands that, say, my ancestors left in the 1600s and 1700s… how would that work?

It helps if you already have a passport. This is important. Go here:

https://travel.state.gov/content/travel/en/passports.html

and follow the instructions there – whenever you land on it. Passports are issued by the State Department, and the State Department is currently being defunded and depopulated, so their processes may change.

This hypothetical traveler – let’s call her Max Peregrine – and why not? – is female, disabled, poor, and has very short hair. This puts her in several categories of risk in the US in 2025, and she’d like to know what other options there are for someone like her. Her service animal, a minature goldendoodle, has to go with her.

This is important.

Max has learned that a pet leaving the US has to get a certificate from a vet specifically qualified to issue international pet health certificates. She asked her usual vet, who referred her to the USDA web site to find one.

The USDA has been running increasingly lean for years, and has recently been gutted by the incoming president and his team, so the list of vets qualified to give this pet health certificate is out of date.

Max has been disabled a long time and is used to this kind of disappointment, so, after an Epsom salt bath and a TV break, she called down the list of veterinarians in the area until she found one who can (theoretically) give this certificate.

It took the one vet she found 3 weeks to research whether this is even possible. The USDA (which supervises animal health certificates for travel) is running out of staff, after all, and every country people want to bring their animals to has its own peculiarities over what is required to clear a pet for arrival, so it gets very complicated very quickly.

Sadly, the information that non-vets like Max find about import requirements is less than half the story.

Also, the US export process is complex in itself, and requires a 3-hour minimum turnaround between the vet and the USDA for the form to be submitted, reviewed, inspected, corrected, approved, and printed out. That is, if nothing goes wrong.

This vet certificate has to be issued within 10 days of departure (in some cases, 3 days, depending on the country the traveler is going to) so it’s good to start this process well in advance, and be willing to stay flexible.

If, like Max, your pet had an uncertain history or belongs to someone with limited mobility, it’s possible you’ll hit a snag: if the initial rabies series was not done exactly right, you might have to start the series over, do a blood test in 3 weeks, and be sure to get the next one inside of a year.

If you travel to Europe, you’re in luck: go to a certified vet there and get your pet an EU Pet Passport. It’ll make everything a lot easier as it’s widely accepted.

It’s important to remember that Max belongs to a category of people who can’t afford a package trip, nor a concierge trip. She has to do all the planning and reservations herself, and track all that info if, for instance, her pet’s initial rabies vaccination did not happen exactly as intended, and every leg of her trip has to be adjusted, by herself, one piece at a time.

Every transport company has their own pet policies, so she also has to call every single carrier in the chain of the journey to make sure her pet reservation has followed her.

It’s fortunate for Max that her executive function happens to have extra bandwidth for travel planning. It’s in her DNA. Her ancestors have been traveling for at least 350 years.

Since Max’s mini goldendoodle, a girl named Sam, is a Service Animal, there’s no question of that pet being refused. She has to fly with her person.

However, her paperwork still has to be in order!

So, having rectified the rabies shot situation, changed the entire trip to 2 weeks later to make sure her dog can come, and found half a dozen places to get food that matched her dietary requirements in each place she planned to stay in, Max was smart enough to know she could not possibly relax until she actually had her toes in the sand and her dog in her arms at the same time. The preparation for this trip had only just started.

Max is probably a bit overwhelmed, but can get good advice and good tools. She got Smart Tags for her luggage, found friends willing to be phone buddies to use Find My Phone to watch her progress, set an alarm to remind her to turn on Location and 5G at every transfer to give Find My Phone a signal, and then returns to low-rad mode so she’s not battling cyclical vomiting syndrome (which is what happens when she’s around too much signal too close to her body) while conducting a long trirp.

Cyclical vomiting is never fun, but it’s worse all around when you’re packed into Economy class.

Max, who hates travel surprises and likes to be organized, has also prepared a travel folder with pockets and tabs:

Complete itinerary in the inside pocket in front.
First tab: Check in information for each stage of the trip. This also proves that she plans to return in less than 90 days, because that’s important in an increasingly immigrant-hostile world.
2nd tab: Visa related info: trip insurance coverage, with the coverages page copied and stapled to the front for easy reference.
3rd tab, more visa related info: Lodging reservations, printed in every language she’ll be travelling through, so each border can conduct its own checks. Arriving with nowhere to stay is a big no-no these days; no more turning up and finding the nearest hostel.
Health tab: vaccination info. A lot of places really care about this, so get your shots if you want to travel, and get printouts from your provider. If you can afford it, you can have a travel specialist doctor make a yellow International Certificate of Vaccination, which is accepted everywhere – like the best credit cards.
Emergency: this tab is particular because Max has underlying medical conditions. There’s a MOLST form, which providees instructions for when someone is unconscious and can’t tell you if they want CPR or oxygen. It should also have copies of prescriptions, which you can get by calling your pharmacist and asking them to print them out. (Some countries require prescriptions hand-signed from the doctor’s office, but electronics are making their way into this process more over time.)
The pet, naturally, has her own tab. Her health certification, rabies documentation, and whatever else is needed, go here. This includes her microchip number, because pets require a chip for travel.

At the back of the folder, Max has left space to keep brochures and flyers for things she most wants – from safe places to get food, to inexpensive trips, free/cheap sights, and bus schedules. Max looks forward to filling that up, but knows she has to be careful with money because she’s still poor … she’s just staying somewhere a lot cheaper than her home at the moment, somewhere the government is not (yet) committing very messy self-merc.

And then there’s packing. Max has to bring her own self-care mechanisms, which involve a lot of pillows and some extra gear. Being disabled is a lot of work and there’s just no getting around that. Everything that’s most necessary for that work has to come with, or be bought there, and she’s on a tight budget.

Happily, sunshine is free!

Max is an expert at enjoying the little beauties and making the most of whatever blessings come her way. She’s going to have a fabulous time, and so is her service animal.

I’m a little envious, but I’ll be sticking around for the foreseeable. I helped Max with some of her research, though, so there’s likely to be more to come…

TIL: how to handle legal-ish problems in MA

Isy / February 21, 2025February 21, 2025 / legislation, money, politics, realpolitik, Today I Learned.., what works

TIL (Today I Learned) is a new category that lets me capture the random sh-…stuff I learn while “living anyway”.

Today’s fun topic is, “You don’t have to hire a lawyer when your employer is screwing you. You can contact the Attorney General’s office and let them handle it.”

This is based on Massachusetts. This is widely considered a blue state, but it has usually had a Republican governor until recently. What we are, is a well-educated state. We tend to vote for smart people. That suits me.

The A. G. has a job to do

From an ordinary American’s point of view, the Attorney General’s Office exists to protect you from bad-faith dealings with those who are in a position to screw you pretty badly: employers and businesses. Not only do they need to follow the law, like we all do, but they need to keep their activities from skating too close to the edge of it.

The A.G.’s job is to provide access to protection from so-called “bad actors”, and to intervene when it’s needed.

In case you wondered.

First, we’ll look at employment law.

The A. G. handles employers who behave badly to employees

If your employer is:

Stiffing you for pay or benefits you’ve earned,
Crossing the line on hours required or how you’re supposed to work,
Failing to provide safety gear for the job, from PPE to jack-lines and harnesses,
Refuses adaptations(*) for your sight, hearing, movement, or typing problems so that you can do your work – which you’re qualified for and able to do with reasonable accommodations,
Etc.!

Then…

Start by collecting your evidence – emails, work schedules, time cards, photos or footage, text messages, relevant pages from the company manual, and anything else that helps to tell the story. Get time and date clues in everything, whenever possible.

Write out the problem. (It’s a great idea to write a first draft with all the emotions and bad language first. It’s good to get that out of the way to clear the mind a bit.)

Facts, facts, facts, one after the other. The facts alone will tell your story. A word or two about your essential motivation is good, though – e.g., “Fearing for my safety, I refused to do that task without proper gear” is a useful statement of what informed that decision. Consequences matter. That’s a fact!

If you peel off the emotional impact of what was done to you, it leaves All The Room for the emotional impact of events on the reader. That is a lot more powerful than all the descriptions of feelings ever.

Then, take a look at this page and upload your report when you’re ready

https://www.mass.gov/how-to/file-a-workplace-complaint

They’ll be in touch and either take the case to court or guide you on whatever next steps are most appropriate. They may advise suing and will suggest lawyers who will take the case on contingency – meaning, you give them a 30% cut if you win (even though they do most of the work), or nothing at all if you lose.

(*)A note on adaptations and disability

Thanks to many years of effort by people like you & me, the Americans with Disabilities Act was passed in 1990 (1 year before I became a Registered Nurse) and then, after 18 years of experience, was updated in 2008 (3 years after I became too crippled to work) so that its requirements were clearer and so there were fines and consequences for not following it.

Since disabled people have been one of the last legally and socially acceptable targets of prejudice (especially at work), this legislation was historic indeed.

The current text of the ADA is here:

https://www.ada.gov/law-and-regs/ada/

At the federal level, this law is under attack. Here is the latest:

https://www.cbsnews.com/news/airlines-disabled-passengers-wheelchairs/

This is the most accessible of the articles I found about this.

Those of you who are familiar with wheelchair-riders know just how expensive, valuable, and necessary these things are. Some of you (like me) know people who’ve lost the use of their chairs because of damage by airlines. It’s unthinkable to us, but it happened a lot; was finally addressed; and now that protection is at risk. Call your legislators if you care about this:

https://www.usa.gov/elected-officials

If you’ve had a disability – or other right-to-access – issue that seems illegal or seriously wrong, then go to the Civil Rights page of the AGO, where they handle all the issues of social injustice – disability, religion, race, gender, and so on – and follow the procedure:

https://www.mass.gov/how-to/file-a-civil-rights-complaint

Consumer (not employee) complaints

Hot tip: if you’re being screwed over by a business you bought goods or services from, the same approach applies: go to the AGO and funnel your issue into the Consumer Complaint division.

In MA, that journey starts here:

https://www.mass.gov/how-to/file-a-consumer-complaint

It might take a couple of months to get to the top of the pile, but they will open negotiations if you’ve written a clear, factual complaint. (I’m naturally assuming all my readers would only submit legitimate reports of unjust treatment, though most sites will feel compelled to remind you not to submit frivolous complaints. As if we have that kind of time!)

When they call you to start negotiating, be patient and tactful – yet clear. No name-calling the opponent, no matter how much they deserve it. Let the facts speak for themselves. Walk through each step of the process and let it unfold, because the negotiator hasn’t been what you’ve been through and they need to learn what that jerk you’re dealing with is like, for themselves.

I say this only because I have a little trouble with it myself. Pain-brain makes it hard to be detached, but it’s worth the effort.

In short…

The Attorney General’s Office has your back.

If they don’t, we’ve all got a much bigger problem.

Fully-qualified human beings

Isy / February 17, 2025 / critical thinking, Dept. of Blith. Obv., humor, mortality, perspective, realpolitik, satire

When I was working in the software industry, the term “fully-qualified” entered my world in a marvelously exact way.

The specific programmatic terminology here is from the Java programming language. Don’t let it bother you – some things are just details.

Java uses an organizing category called “classes” for unique bundles of code that define all the features, characteristics, and actions that this bundle of code needs in order to do what its name says it will do. (Other programming languages may have other terms.)

Each class has to have all the parts it needs to know when it’s wanted, what it needs to look for, what it has to do, when it has to stop, and what (if anything) should happen next.

If a class is completely and properly defined in all these parameters (and sometimes more), then it’s called a “fully-qualified” class. It can be trusted and can be used across multiple regions.

Not all classes are fully-qualified. They’re okay for quick tasks and have a place in the Java ecosystem, but their usefulness is limited. Those classes, those hunks of code, usually have to be filled out to be fully-qualified or else deleted when the time comes to prepare a program for market.

Any robust program needs an awful lot of classes of many different types. It’s inefficient to have too many similar classes — you’ve got to have different classes to do different tasks. All that they have to have in common (besides logical coherence) is that they must be properly constructed so they can do their task — whatever their particular task is.

This diversity of classes is essential to good programming.

You’re starting to see the metaphor here, aren’t you…

Some people view all others as fully-qualified human beings.

Some people do not. Only a few meet their idea of fully-qualified — that is, complete and correct and fully able to function as they should. This, naturally, means that they have specific and limited ideas of what humans need to do.

When people beat on those who diverge from their idea of truly human (those targets are usually women or gender-bending or people with disabilities or people of color or poor people) they’re acting on the fact that they don’t see these other people as fully-qualified human beings.

The people doing the beating-on are hung up on the feeling that these people are not properly “written”, that they’re missing huge hunks of “code” that limits their function — and makes them fair game for being taken out, sidelined or deleted.

We aren’t all the same, and nor should we be. It’d be a terrible program if we were, and would quickly choke on its own redundancy, crashing itself and possibly blue-screening the whole show.

Maybe we should go back to the old CRT colors and make it orange-screening.

What do you think? Too bold?

Foggy… and formats

Isy / February 15, 2025 / critical thinking, CRPS knock-on effects, imp-possible, what works

There’s been a lot going on, but I’m not up to discussing it for lots of reasons, but mostly, TBH, because I’m foggy.

I’m thinking about how to put my work together differently. Like, make it easy to focus on overarching topics – traveling with illness and pain; navigating relationships; communicating with loved ones; getting your message through to doctors; handling flares; laughing at the absurdities of this life; being a smart-aleck when appropriate; coping when it’s hard to keep going… these are specific subjects, and it’s not good to hit an unsuspecting system with a surprise ttopic.i don’t think category tags are sufficient warning. We should be able to choose our topics upfront.

So, I’m mulling Patreon or books or some other way of putting out my work so it gets organized into logical groups. You should still be able to find the most recent if you want to, and go in reverse chronological order; it’s just that that should not be forced on the reader the way a normal blog organization does it.

Not sure I’m explaining myself well. Like I said… foggy.

What do you think? Is there a subset or grouping you’d like to see? There are a lot of ways I could organize it – do you have a favorite format?

I’d love to hear what you think! Feel free to comment or whatever.

Neuro reset FTW

Isy / February 11, 2025February 11, 2025 / activity, basics, care team, imp-possible, perspective, self-care, what works

I’m working on building up stamina because being a blob doesn’t agree with me.

I had one of our rare, hard-won, absolutely stunning neuro physiotherapy sessions yesterday. It usually takes time (days or even weeks) for my body to embrace the resetting, but this one is showing up fast.

Until last week, walking a bit too far would wipe me out.

When I was well, walking lifted my spirits and calmed my mind, and “too far” had more to do with comfort & convenience than anything more pressing.

For most of my illness, walking helped in the aggregate – if I kept it up, I did better over time. It was good, and I was glad to do it, but…

I’d forgotten, until today, just how lovely it was possible to feel after a good walk.

Yes, I’ve overdone a bit, and I’m open to the idea of staying in tomorrow & taking it easy.

I just… I haven’t had a workout high in… dear heavens, I can’t even remember. Decades, possibly.

Must remember to send this link to my physiotherapist. She’ll be:

A. Over the moon for me.

B. Reminding me to drink a lot of water and put my feet up for a bit.

It’s hard to keep it all in perspective – to celebrate this properly, without falling into the old trap of ignoring all the ongoing work it took to get here; to keep it up & stay honest about the jungle of limits I still have to negotiate.

Good day, though, eh? Really, really good. My heart is as light as the feather of Ma’at…

New times; new topics

Isy / February 7, 2025February 7, 2025 / activity, ANS and fight-or-flight, imp-possible, moving/traveling, perspective, radical presence/radical acceptance

For audio version (with extra fun stuff), touch this sentence.

I’m not going to mention current events in my country.

This is a series about traveling…

Traveling in interesting ways.

The ADHD is strong in this one:

If a thing is interesting, it is ever so much more bearable.

If I were to travel, I would like to bring my pet.

I hear some of you shouting, “Why, you insufferable loon? Don’t you have enough to deal with??” (Sorry, Mom.)

For one thing, I like her company; for another, she keeps me on schedule and is really good at “body-doubling”, or hanging around to help me focus on a task. She literally holds the yarn while I crochet, and tracks the loose bits of thread when I’m sewing. Cats are supposed to be interfering, but she’s genuinely helpful.

Also… Traveling with a pet definitely makes this more interesting.

Chapter 1: pet passport

I was going to start with the effort to find a vet to make her travel certification happen. I’m not up to that right now.

Chapter 2: Trip planning

I’ve been reading up on alllllllll the aspects of this trip for a long time. Years, really, but most recently for about 3 weeks. It takes some noodling around just to find out if it’s impossible or just kinda weird.

In case it isn’t obvious, I’m okay with weird. Impossible takes a little longer.

Aspects to understand for planning a trip like this:

– The only way to get to my target continent is by air.

– Some airlines are pet-friendly.

– Some airlines that are pet-friendly for domestic flights somehow refuse to carry animals at all on international flights.

– Some airlines that are willing to carry animals on international flights, don’t allow them in the cabin. From my experiences before, I absolutely, flatly refuse to send a cat in the hold, regardless of the airline’s reputation. Never again.

– Am I overthinking/ over-explaining? I think I am.

Point is, there are all these layers and layers of information to dig through. I had to keep on digging through possibilities, then peel back the incompatible options, until everything finally got very simple.

Cats are not supposed to be in a carrier for more than about 7.5 hours. So, all I really had to do was get her from my airport to an airport less than 8 hours away; 3 to choose from. Flights within that other continent are all within that time frame, so the crossing was all that mattered.

Still with me? Good.

Flying into one of these 3 cities puts me at the heart of the high-speed rail line, something I’ve been coveting a ride on since it was first mooted roughly half a century ago.

At the other end of that high-speed rail line is a ferry ride, a 16-hour journey over one of the most adorable seas in the world, to an island that entrances me.

The total cost of the train and ferry (even with the pet) comes out to less than half the cost of another darned multi-leg plane trip *without* the pet, eating bad food, too far up to enjoy the scenery, and breathing other peoples’ air.

In short, if I were to organize such a trip, we’d have 3 modes of transport over 40 hours, lungfuls of fresh air, and moonlight on the Mediterranean to welcome me home.

I might love it. I might hate it and never want to do any of that again. Doesn’t matter from here… because it’s interesting, it’s affordable, and I want to give it a shot.