Category: radical presence/radical acceptance

Halcyon insomnia

Isy / / loved ones, perspective, radical presence/radical acceptance

I’m having an episode of rock-hard insomnia. I’ve been having unpleasant dreams about an obnoxious person I used to know. I wondered if there was some concealed message in these recurring distasteful dreams, but, on reflection, I’ve concluded that my brain is just being an asshat. Sometimes it just is.

Having unpleasant dreams does cause insomnia for me; it seems I don’t want to go to dreamland when dreamland sucks. That seems fair!

So, I’ve dabbed lavender oil on my pillow, which calms my central nervous system and wards off nightmares. I’ve taken hydroxyzine, but didn’t even notice the window of opportunity, so that’s no good. I have one of my favorite books read by one of my favorite readers playing, but it’s just noise tonight.

Nope. Nothing.

I’m more relaxed, sure. Just nowhere near sleepy-bye.

What occupies my mind most of all, though, is how this period in my life, personally, is a halcyon time. Hard as it is in the shared realities of politics and funding, my personal life is filled with kindness, care, and love, more than it’s been in… oh lordy, let’s not go there. Years.

I adopted a young friend and they have brought their partner and siblings and pets into my life. Every time a new member of this clan meets me, my soon-to-be kid-in-law watches the exchange, nods, and says, “Everyone in this family falls in love with Isy,” as if it were the most natural thing and completely to be expected.

It’s an odd way to double your family size. I realize that. It won’t always feel so easy, because that’s life and being human. It’s simply that, after decades of grinding through this really bloody hard work of being alive with CRPS and all its atrocious friends & companions (dysautonomia and disability to start with and spiraling down from there), working through every challenge essentially alone for most of that time… this? This is different.

One of the kids is staying over to do my housework and help with shopping and cooking. They commented, insightfully, how glad they were that I experimented more with food when they were around.

I said that it’s easier because if I choose wrong and my fingers turn into sausages, I can still eat safely and recover without losing ground, because they’re there to take care of things. Also, my allergies are much better because of their work.

I said, “It’s safer when you’re here.”

I had one of those echoey moments when a bone-shaking realization hits you and you can either weep for the dreadful risks and hardships of the past or take a breath and be grateful for the present.

I took a breath.

So, although I need to sleep and I don’t want any more nightmares, I’m enjoying being awake because I can just wallow in this feeling that — after so long and so much — I find myself recognizing, with a rare purity, that these are halcyon days for me. Right now. I didn’t know I’d get such a wonderful time again, but I hoped for it, for many, many years.

I’ve had good times, don’t get me wrong! I’m good at finding joy and making the most of moments of connection and delight. I have friends and relatives I adore and can rely on. My life has loads of good.

It’s not the same as this feeling of bedrock beauty undergirding my daily experience. Does that make sense? It’s not just beautiful moments with loved ones making gorgeous spots among the daily crap. It’s a wholeness of greater safety and loving peace. The lovely moments string together until the brightness takes over.

As my adoptive grandchild sleeps in the next room, I find that I don’t have nearly enough fingers and toes to count all my blessings. I don’t mind being awake tonight. It’s a halcyon insomnia!

SMIB!

Word for the day while riding whirlwinds

Isy / / cultural context, radical presence/radical acceptance, realpolitik, survival, word for the day

“Coherent” is a good word.

In one sense, it means making sense; that is, speaking & writing in a way that’s both rational and relevant to our shared reality. It’s not messy, shouty, or rude.

It also means being complete in itself in that moment. It’s when all the pieces that make up an idea, feeling, or statement hold together. It’s the opposite of fractured or flailing.

It can seem like a high bar, especially in a country where the system of education has been under siege for half a century, the economy is teetering, and the leader is sending soldiers into cities to attack people that he thinks disagree with him. (If they agreed with him before, as many did — Southern California used to be deep red, despite Hollywood’s reputation — now, probably not so much.)

The opposite of coherent is incoherent.

So, as I lay here waiting for my body to come online and hope we get to be vertical in the next hour or two… and as I watched my mind flicker and flash among the upheaval, anguish, and uncertainty in my country, my loved ones, and my own future… I realized today’s word had to be “coherent”.

As I mulled it, I felt my mind coalescing into sanity again. I found myself reflexively doing the stretches that keep my legs working. I found my sense of what’s my stuff and what’s others’ stuff re-establishing itself. I found myself feeling fortunate again, which I am, because I’m safe and housed (and safely housed) and I live in a charming place where I can get my needs met.

The whirlwinds keep whirling. It’s their job. I think of being in a bright, bouyant column of air filled with those of us who hold each other up. The energy here holds us together instead of tearing others apart.

In the midst of the storm of chaos, I hold myself to the word “coherent”, and coalesce into myself. The winds may throw me around, but they don’t pull me apart any more.

 

Word for the day

Isy / / brain care, injuries & surgeries, perspective, radical presence/radical acceptance, word for the day

Spoonies, you know how we sometimes drift through the day? If we don’t have an external demand shaping our efforts — kids, work, methodical spouse or housemate — then, for some of us, getting through the day can be a matter of bumping or lurching from one need to the next (use toilet, refill water, rustle up food, manage an appointment, negotiate for a ride, do the self-care things that require that up-front energy to make them happen, organize recovery periods from each of those activities…)

Yeah.

An old friend of mine reminded me that there can be a thread running through the day, in addition to the usual “what’s the next task for survival and coping?” —which, let’s face it, gets a bit grim.

We can suggest to ourselves what that day’s thread might be.

This can line our attention up on it, and make the day less annoying and, in some ways, more fruitful. It also comforts the brain & spine with a sense of supportive purpose.

That’s worth a lot.

I mull it over the night before and find myself with a short list. Next morning, I pick one or two.

This also gives my brain/mind the supportive sense of being cared for at the beginning and end of each day.

I picked two this morning, but I can only remember one: calm. Picking “calm” as the thread for today is particularly good, because there’s a lot to do before I get a molar cut & chiseled out of my head with hopelessly inadequate pain control this afternoon, and thinking about that is not calming, but it’s going to happen and it needs to happen. I get to figure out how to mitigate the horror and so forth, and stay in my skin (so to speak) while I prepare for a testing few days of hard recovery.

Because I chose “calm” for today, I’m taking the time to write this, instead of trying to cook soft food, drag out the vacuum, shower, and make tea & take my pills, all at the same time. And doing all of them badly, if at all.

This word for today is providing a good anchor to hang onto as anxiety and the foreshadowing of so much more pain tries to wreck my mind.

It’s not that things are going to be anything other than what they are. It’s just that it’s not actually the end of the world, the wound will heal, and I can weather that process. I remember that when I reach for the word and idea of “calm”.

This is the 4th day and the 4th word since that conversation. It has improved my ability to get things done that are time sensitive, and it’s helping a lot with getting through this testing day.

I used to do this years ago. It’s amazing what we forget.

I’ve already vacuumed and breakfasted,  and did them well enough (my vacuuming kit is in the picture below. Check out the padded suede gloves to cut the vibration from the handle!)

This image shows a woman wearing heavy duty ear defenders, with heavy-duty padded leather gloves within reach.

Now for tea, pills, quick washup. This is do-able.

Calm. Calm is good.

Pulling the masks off in pieces

Isy / / adaptation, communication tools, CRPS knock-on effects, documentation, imp-possible, perspective, radical presence/radical acceptance, self-care

Having crashed and burned in a (for me) spectacular manner, I’m being (ahem) encouraged by many of my nearest and dearest to stop pretending I’m so much healthier and stronger and more multi-systemically resilient than I am.

My underlying state of health is not good, and I hate discussing it. It’s tiresome and depressing. That said, ignoring it obviously doesn’t work for long. Need a 3rd way.

I’m pushing 60. Time to stop pretending I’m 34… which was my last year of what I still reflexively consider my normal health & athleticism, and it was also when this pain syndrome was laying down its first tracks. Between multiple bereavements, recurring respiratory infections, and repeated courses of megadeath antibiotics, my nervous system was primed for disruption.

As one friend said, “We habitually present a version of our pre-CRPS selves” and, outside my 4 walls and the privacy within, I don’t seem to have anyone else to be yet. How can I exist without coming off as hardy and buoyant? I don’t know what that could even look like.

I go out and do things in public view, then crawl home (nope still no car, yes it’s been all of 2025, yes I’m struggling more all the time, don’t ask) to recover in private. Those are my 2 gears. I’ve recently developed a half-gear of being in my garden plot, but that now requires a lift because the bus is too brutal – although I love that it’s currently free!

It feels like I’m waiting for the world to allow me to heal. If that sounds self-pitying, you’re probably right. I’m new to un-masking, and it’ll take practice to get the tone right – un-self-pitying, but fully honest for a change.

Showing showering

I’ve been drawing cartoons of lives like mine for years. I was waiting to put them into a book, but they’re doing no good in my folio and some have been there for way too long. I’ve also drawn communication tools. It didn’t seem time to share them before, but it sure does now.

First up…

Taking a shower on a bad day:

When I’m rash enough to shower on a bad day, it feels kinda like this.

This picture isn’t finished, but it’s good enough. You can enlarge it to see the way the (to my senses) appalling changes of temperature wrap around every individual drop’s path all the way into the drain.

I couldn’t find a way to draw the way each drop feels like there’s a hook in its head, physically latching onto and dragging energy out of my body. That doesn’t hurt (unlike the hot/cold nonsense) but boy, is it exhausting!

So, when you can tell (pew!) that I haven’t had a proper shower or even gotten wet recently, you’ll be able to surmise that the pain has been higher than my ability to cope with the intensity of the experience.

For the record – I gritted my teeth and showered & washed my hair yesterday morning! I’m taking a bow, frankly. I had a familiar audiobook to listen to, which sometimes can keep my attention off those hot/cold and dragging sensations.

Keep in mind that everyone’s pain is their own. CRPSers don’t all have the same experience in the shower, because, for some, it’s awful in some other way. Not all days are this bad, even 24 years in. Nuance is key. Also, boundaries.

My pain isn’t yours, and nor should it be.

The idea here is to give you a chance to look on, without looking for anything more than your witness. That right there is a powerful thing: just being seen.

Don’t take it on.  Just adjust your expectations, maybe, as I’m learning to do myself.

If you’re a bio-nerd, read up on how humans go from mad mitosis to having skin and organs. It is absolutely fascinating – and explains a lot about neurological variations!

Communication tool: moods & self-care

I’ve also got a delightful communication tool to share.

As we all now know, my mood may not reflect the outward, apparent situation. There can be stuff burbling away that affects me in ways I might not realize, but others can.

I came up with a rough drawing of a rating scale for my housemates to use (when I had some) and it was a huge help to get that objective feedback – without anyone being defensive! I’d sometimes find the magnet moved to a different number, then go away and take care of myself until I was pretty sure it could move back up. Usually, though, they felt free to call me over and show me where my behavior was, and I loved their honesty. Did me a lot of good.

Click here for the full-sized PDF: Irritability Scale

I particularly like how it indicates when a level of irritation is appropriate. That was a mind- blower for me, as I’d been telling myself that it was always bad to be unpleasant. Nope! Sometimes it’s perfectly appropriate!

I think, and hope, that sharing these images and tools will:

A. Be useful, and

B. Get it right through the concrete (taps own head) that I need to come up with ways to live and engage with the world that are congruent with this reality.

My inner Cleopatra, queen of de Nile, needs to get back to Egypt.

Cheers and virtual hugs are most welcome! I’m daunted by this job. I mean… I value honesty enormously… just not about my weaknesses and disabilities 🤣

Care of Spines & CRPS

Isy / / 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 / / 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 / / 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…

New times; new topics

Isy / / 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.

 

Another chance to get it right

Isy / / activity, adaptation, basics, critical thinking, Dept. of Blith. Obv., humor, imp-possible, moving/traveling, perspective, radical presence/radical acceptance, realpolitik, what works

I’ve been chewing over something for awhile and recently realized that it might be time to apply that much mercy to myself. It’s a more coherent, whole way of thinking about what I discussed in some panic in my previous post.

Complex chronic spoonies tend to drive ourselves hard because we really have no option (the exhausting, but relevant, internal chorus of “adapt or die, figure it out or eff off, push through or give up, fight or fall” is inescapable) but does it need to be so ubiquitous?

A lot of these posts have been oriented on finding light through the cracks, on putting life itself into center stage somehow. I think I’m cooking up a new way of doing that.

The most basic of basics

Many years ago, when I was working as an emergency nurse, I realized that (despite the hype & excitement) our job was fundamentally simple: give people another chance to get “it” right.

Whether “it” was keeping up with their meds, staying off of whatever was poisoning them, choosing better company, finding the healing path that worked for them – whatever. There are fewer “its” than their are people working on them, which is why we are never the only one with our struggles.

That made more sense inside my head. Sorry.

People wind up in the ER because something bad happened, and usually human ignorance, stupidity, or violence was involved.

That’s not about blame. People don’t always get to choose their company or can’t always bear to be alive without some kind of buffer between them and their situations. Even if they did do something colossally daft (like the rich kids who decided to cut out the middlemen and drive 350 miles to buy their drugs from the distributor; 4 came down, 1 eventually went back), it’s not right to require mistakes to be terminal if they don’t have to be. 

Of course people with heart disease should take their meds even when they feel fine, and get periodic blood tests to show that it’s working. Of course people with diabetes should keep an eye on their blood sugar and stay on their meds. Of course primary care when you first get symptoms is better than going to the ER when you start to fall to pieces… but it’s awfully hard to find a primary doctor these days.

Life is complicated and increasingly expensive. ER work really shows that.

Anyway, I saw our job not as holding back the sea with a broom (as some do), but as giving individual people a chance to figure out how to do things better. Lift properly. Drive sensibly. Stay off the hard stuff. Find an appropriate doctor who’ll listen – and then talk with them.

Nobody likes to be told, so reciting these mantras to them doesn’t often make sense. Oddly enough, it can be a lot more meaningful when you’re meeting their worried gaze as you administer the medication or fit their c-collar or go over the x-rays with them. Or tape and dress the wounds in their wrists.

There is so much we don’t control… sometimes we just have to remember what we could control, and how to put that in reach. It’s not easy, but it’s often very simple. When the universe is dropping its big hammer, where do I need to be when it lands? Under it? Or can I get off to one side? What will I have to let go of in order to get out of the way? Is it worth it?

The answers to this aren’t always obvious, and “worth it” to some is not the same “worth it” as for others.

What that looked like in practice

We had a lot of repeat customers. Some of them I wound up zipping into body bags, because what it took to get out from under the universe’s hammer was either too far out of reach or not ultimately worth the effort of letting go of what they were clinging to. They mostly didn’t want to die, but it wound up being too hard to do what it took to live.

I’ve got to respect that. It’s not for me to judge.

Some of them I saw come back just for ordinary bump-and-owie stuff, showing me the healing scars (inward or outward) of their old struggles. There are no words for the sense of sunrise I felt on seeing them. It made the rest worth doing.

It was all their work… but it was up to us to give them another chance to get it right.

My chance

I absolutely love to work. Being useful and productive is the bomb! If it weren’t so important to me… well, I probably would not have come down with CRPS, which stemmed from relentless overuse injuries in my case. I could not take a break to save my life. Whatever it was, I had to jump in with both feet, arms flailing and shouting “incomiiiiing!”

I imagine I could be pretty tiresome that way. Belated apologies to my friends and colleagues along the way!

I’ve been wrestling – for years (how embarrassing) – with recognizing that having fun… recreating… seeking diversion instead of merely a change of work… I’m not even sure how to put it… but that loose, apparently useless, seemingly non-productive use of my time, is really good for me.

It lowers my stress levels. It reduces my pain. It raises my spirits. I don’t know if it gives me back any of my lost abilities, because I find it incredibly hard to do and have never been able to hang onto the easy-going vibe long enough to find out.

What with one thing and another (I’m an American living stateside in January of 2025; IYKYK) I have a powerful inward pull to go somewhere glorious – and affordable, thank you very much – and simply muck about enjoying the diversions. Play tourist for once in my life. Soak up pretty colors and different sounds. Be warm every single day.

And, if I get bored or don’t like it well enough, simply go somewhere else.

At this point, a lot of places are more affordable than the U.S. (more on that later) and, for all the challenges of travel in this body, I do plan on doing nothing but recover and enjoy myself for a good while afterward.

…It’s a weird idea, honestly.

Good thing I’m used to maintaining and cultivating relationships via the internet, after a quarter century of having to do so. It makes love more portable.

It’s still a weird idea. Wherever I go, I still bring myself along, and I know I’ll have to leave my compulsiveness behind with my snowboots. That’s unnatural, but I’ll learn.

Learning to let go of that deep attachment to being productive and useful is not the same as not being productive and useful – but it could give me time and space to heal my much-clobbered systems.

That might be the point.

Rest and play is widely regarded as essential. I think that’s the “it” that I need to work on getting right. Get out from under the falling hammer of overdriving a broken system.

Still a weird idea! LOL!

The times, they are a-changing

Isy / / activity, ANS and fight-or-flight, care team, critical thinking, Dept. of Blith. Obv., humor, imp-possible, marathon, moving/traveling, nature, nutrition, perspective, politics, radical presence/radical acceptance, realpolitik, survival

Without descending into the morass of modern U. S. history and politics, let’s just say that I’d like the first months – up to half a year – of the new regime to happen with me being somewhere bearable, where good produce is a lot cheaper and the medical care both stable and affordable.

None of this is likely here, where my food prices rose about 30% during the harvest season and there is much loose talk and planned chaos around Medicare and the dole (which I depend on to stay alive) – not to mention the cost of everything rising by 15-60%.

The pundits and those who follow them tell me not to worry, because there are rules and procedures “they” have to follow.

Given the Mump track records regarding rules and procedures, all I can do is smile sweetly so as not to worry my loved ones, and let my mental gears turn more quietly.

Hot tip #1: a tariff is a tax. These get passed on to the consumers, not sucked up by the companies from countries exporting to us.

Hot tip #2: as we’ve seen so clearly over the past 5 years, industries don’t just raise costs in line with their own expenses, but jack them up to see just how much the market will bear. Given a captive market, this has gotten really ugly. Remember eggs last year? The sub-prime lending fiasco leading to the 2008-9 crash? Yeah, it’s an established pattern.

So anyway… here I am: if I stay in one place, I’ll be wrestling hard with un-meetable expenses (my dietary needs are simple, but not cheap) and a constantly-cycling urge to run away. That’s neither stable, healthy, nor fun. Been there, did that, threw away the t-shirt.

I didn’t grow up in one place, or even one country. I’m not mentally stuck here, and I don’t believe I have to put up with the scrambling anxiety or insufferable expenses to come as the Mump Regime and its trail of chaos gets itself through the initial reality-checks.

I’ve been toying with the idea that it’s healthful and good to be warm, stable, and happy. That takes adjusting to, because so much of what makes me feel anchored to the world is about work. I love to be productive. It makes me feel superbly grounded to be useful/helpful to others. This is very compelling… but as far as my daily choices go, doesn’t have a lot to do with being warm, stable, and happy.

It does have to do with abusing my eyes and attention with falling down back-lit rabbit-holes and trying to turn the swarms of information floating around in my brain into streams of relevant words, pertinent to the question I’ve just read.

But I’ve got serious limits and, as it turns out, I am much more useful and productive after I’ve been taking really good care of myself and playing and recreating and being happy outdoors – a lot.

This doesn’t sound like computer-gazing, which is how most of my work happens.

This focus on making myself happy is a weird concept, and I’m still working out a lot of the details. I mean, not even details – I haven’t settled on where to start; even my departure date is unfixed. Getting the right people in to keep my place clean & warm while I’m gone is kind of a big deal too. I’m not prepared to move and won’t sacrifice my sweet little home – not until I’ve got a much better offer in hand, anyway!

Anything could happen. I’m trying to keep breathing properly as I say that.

Maybe it’s time to take a sabbatical…