self-care – Life, CRPS & Everything

Windup, not in the athletic way

Isy / October 16, 2026October 16, 2026 / basics, definitions & descriptions, injuries & surgeries, meds/drugs, radical presence/radical acceptance, self-care, slice of life, Toe, what it's like

I forgot that I posted an earlier version of this piece. At the time, I didn’t know how long it would take to recover.

It’s ok, though; nobody has read the earlier version yet. 🤣

My life is Tetris. Logistically, medically, attentionally, and furniturely — it’s all Tetris.

Keep an eye on the last word in that series.

There’s a tall metal piece of furniture that’s supremely helpful for drying sheets on, and if you lower it to earth it becomes a water-resist Sunny Obsidian Surge rowing machine.

Excellent piece.

I recently put colorful tape on the bottom end because it had to be moved 2 inches out from its old position and I knew the color would register out of the corner of my eye (my brain responds well to color).

Tetris.

While speaking over my shoulder — which made my peripheral vision irrelevant — I slammed my foot into it.

Despite having 2 people to mask for, I didn’t mask so much as lean over so they couldn’t see my face. I pounded the doorframe a bit (this rower is right by a door).

So much for the immediate reaction. I hobbled to my bedside where all my gear is. I slathered it with magnesium oil (magnesium blocks a chunk of pain transmission) and then, when I could touch it, emu oil (which is a pain-reducing carrier oil that pushes stuff into the tissues).

This was great because, bit by bit, it went from near-blackout pain to simply, y’know, a throbbing nightmare that slowly began to take shape and allow me to work out what to do.*

I put sturdy shoes on, not because it felt great but because my feet needed to feel protected.

I swung my foot up onto a couple of pillows on the couch. Felt the shimmering windup go up my leg and through my hips, lighting up my piriformis, which has always been a bit of a diva. The active CRPS patches in my hands, wrists, and shins all pitched in, singing the song of their people.

I think of pains as having voices, and sometimes their singing drowns out other sounds. Sometimes it’s just a descant to whatever is going on. Sometimes it’s a baseline running below everything else.

Occasionally, the pain just screams.

And now the muscle failure is creeping in, so I have to put down my phone and just listen to something loud enough to drown out this chorus.

All things pass, and, eventually, so did this.

The magic trick

I’ve been practicing resting when I’m tired. I’m 60 now and it has taken up to this year for me to have any real peace with it. Good thing, too, because it allowed me to spend enough time in bed, diligently and gently, for my nervous and endocrine systems to stand down again.

It only took a couple of weeks.

* “What to do” differs for each of us. I can’t take pain meds except Tylenol, which typically gives me about 5-10% relief and sometimes that’s enough to let me cope. NSAIDS trigger a body-wide mast cell reaction which makes everything hurt in a whole new key. Demerol makes me violently psychotic. Other narcotics paralyze my gut and, annoyingly, don’t help my pain. Same goes for weed. Ice makes everything worse with my pain, for tiresome CRPS-malfunction reasons.

So, most of my pain management is what one friend describes as “off-road”, because the health care system doesn’t provide it and hasn’t studied it much. It’s all from my understanding of the physiochemistry of pain transmission, studying the ways CRPS changes that game and working out how to push back, decades of networking and sharing tips with fellow painees, and believing my repeated, reliable, consistent results over my own assumptions.

I hope that this blog provides useful tips to others stuck in similar situations. A lot of us bloggers think about how we can be the resource that we needed when we were newer to this.

History of pain management

Isy / October 8, 2026October 8, 2026 / basics, brain care, science, self-care, tools and techniques, useful links

Someone on Reddit asked how people managed pain before our modern era. It’ll surprise nobody here that I had a lot to say about it.

Another lovely soul asked me to provide links to more info on “this”, and by “this” I assumed they meant central pain, which was the topic of my previous comment.

Here’s a capsule reply…

Bonfire throwing fine sparks across a horizon in deep dusk. This is what it feels like in my head when my brain is burning freshly from a new overwhelming event. — Image CC A-SA by Simpsons Fan 66

Given how exquisitely unique each nervous system is, understanding it is a matter of developing a baseline of practical knowledge then learning how individuals respond to these underlying issues in their own case.

You’re in for serious study to answer your question:

– Best, fairest, most comprehensive and yet readable summary I’ve ever found of my primary condition, which is a template for central pain diseases:

crpscontender.com/crps-primer/

– Blogs, in English, discussing and describing toolkits (mental and practical) for individuals getting their particular centrally-pained body systems through their lives:

https://elleandtheautognome.wordpress.com/ Science oriented, with scales and tools discussed.

https://livinganyway.com/wp/ Slice of life with information embedded inline.

https://princessinthetower.org/ Full of practical suggestions.

If you want to go further into the medical stuff, you’ll find links at the bottom of the CRPS Primer, in the first blog I linked, and at crps.org. It’s medically absolutely fascinating. It’s just awful to have it, but here we are. The trick is figuring out how to arrange life within your parameters and then get life and light back in center stage as much as possible. That’s a very functional attitude with chronic pain.

Full disclosure: One of these blogs is mine.

Central (brain & spine) windup, from inside

Isy / October 1, 2026October 1, 2026 / activity, ANS and fight-or-flight, CRPS knock-on effects, injuries & surgeries, radical presence/radical acceptance, self-care, what it's like

People with pain windup, prepare to feel validated.

My life is Tetris. Logistically, medically, attentionally, and furniturely — it’s all Tetris.

Keep an eye on the last word in that series.

There’s a tall metal piece of furniture that’s supremely helpful for drying sheets on, and if you lower it to earth it becomes a water-resist rowing machine. Excellent piece. I recently put colorful tape on the bottom end because it had to be moved 2 inches out from its old position.

Tetris.

While speaking over my shoulder, I slammed my foot into it.

Despite having 2 people to mask for, I didn’t mask so much as lean over so they couldn’t see my face. I pounded the doorframe a bit (this rower is right by a door). There was silence from the other room.

I put sturdy shoes on, not because it felt great but because my feet needed to feel protected.

I swung my foot up onto a couple of pillows on the couch. Felt the shimmering signal of windup — where pain gets worse and more extensive after a blow, rather than easing off — go up my leg and through my hips, lighting up my piriformis, which has always been a bit of a diva. Spasms crept up my legs and flickered in my arms.

The active CRPS patches in my hands, wrists, and shins all pitched in, singing the song of their people.

I think of significant pains as having singing voices, and sometimes their singing drowns out other sounds. More often, it’s just a descant to whatever is going on; sometimes it’s a baseline running below everything else. Occasionally, it just shouts.

And now the muscle failure is creeping in, so I have to put down my phone and just listen to something loud enough to drown out this chorus. The fever-like prickling on my forehead and the comprehensive exhaustion are par for the course.

I just stubbed my foot. Nothing is broken. Were I healthy, I’d have saken it off in 10 minutes. This has trashed my day. This is a reality check, not an argument… this is what it’s like with longstanding CRPS.

This is the second or third “what it’s like” post, so I’ve made a new category for that. Not everyone wants to read it, and nor should they. Some people want to know exactly this, and this is for them.

I’ve put a lot of work into becoming more aware of my body because it’s easier to get leverage against faulty neurochemistry that way. Sadly, of course, dissociation happens for a reason and it gets hard to stay checked in — but I’m going to work on it.

Later.

I think today is for movies & grocery delivery rather than what I intended. I need a little constructive dissociation.

And that, ladies and gentlebeings, is windup, at least in me. It’s nuancedly different in everyone, but this is fairly standard — for this very nonstandard way of experiencing a normally trivial event.

Tracker and Brain Support

Isy / July 27, 2026July 27, 2026 / adaptation, basics, brain care, communication tools, documentation, imp-possible, nutrition, perspective, self-care, tools and techniques, what works

You know when you need your basic tools or self-care tips and you just. Can’t. Remember?

Me too. Far too often.

Let me introduce my latest creation:

Oops, I mean…

I’ve been thinking about this object for far too long, with lots of complications.

One day, some of those complications may make sense, but, right now, I needed to start with foundations: simple, legible, achievable tasks, with little boxes and numbers to check them off easily.

There are some things paper is better at. I’ve tried sooooooo many tracking apps that I’ve developed a riff about using them.

Apps for tracking allergies,

Apps for hacking maladies —

Working only 1 by 1.

Complex care is just no fun!

Apps for what you need to to buy

Or what to think of when you cry.

Apps for how your bowels go;

Apps for what your numbers show.

Some send info to your doctor!

Others keep it in a locker.

Turn-key claims are such canards

I have to customize them hard…

And therein lies a shocker.

Some apps let you set your own parameters. Great!! Can you write one in, drop it in the right spot, attach its rating box, and carry on?

Nope. Of course not. You have to walk through every blessed step of the engineer’s own logic, digging down to where you even have the option to create a custom line-item, apply its various associated characteristics either before or after you declare it custom (because each app is different), then figure out what system it should be rated under, and at this point were still a long way from done and we’re only 1 line-item in… so I exhale very hard as I vow not to throw my phone into the document shredder because it hasn’t done anything wrong.

I then delete the app and run cool (not cold) water over my wrists and pat it onto my forehead until the flames stop bursting from my nostrils. And then I try to forget the whole experience as completely as possible…

Until the next time, in the desperate hope that this time there might be an app worth one tenth of its set-up time.

With pain brain. And roaring ADHD. And allergies turning my mucous membranes inside out, which, as we know, is a great help (not!), all while my stomach is contemplating rebellion.

So…

I dug out and updated some old tracking sheets, which I once had printed up and glued into a tablet. (That was fun, and another effective format.)

I added a weekly tracker I developed later, and re-formatted it as a brag-sheet to feed the sense of accomplishment. (We’ve got to celebrate our accomplishments! Any reasonable opportunity for joy is key!)

7 days plus a weekly summary makes 8 pages.

This fits very neatly into printable formats.

So… I turned it into a booklet.

And, on every 8th page, I get to pause and take credit for the week.

Fundamentals.

It is never too late, or too boring, or too anything, to work on fundamentals.

Here I go: back to fundamentals.

Isn’t that a sign of strength? 🤣

Quickie: Snorgie sick

Isy / March 20, 2026March 20, 2026 / perspective, radical presence/radical acceptance, recipes, self-care

OMG I have a head cold. WTH???

My last few illnesses have been of the “when do I go to the ER” sort.

This is just… snorgies. Not fun, but so trivial in the scheme of things.

So far. No promises, ofc.

I’m teaching my lovely housemate how to make my snorgie tea, which will have to do until I can stand up safely long enough to breathe steam — the sure-fire way to wipe out a snorge (sinus issue) in my family.

Snorgie tea, for me at least, is roughly this:

1/3 cup/80 ml dried nettle herb (fabulous antihistamine & source of useful minerals)
1/8 teaspoon/~.6 ml powdered ginger (clears things)
1/8 teaspoon/~.6 ml ground clove (intense antioxidant)
1/4 teaspoon/~1.2 ml cinnamon (sweetener)
1/4 teaspoon/~1.2 ml ground pink peppercorns (supports everything else & I like the Asian zing of it; substitute black pepper if you want to & can)

I put it in my reusable linen teabag (you can use whatever you want, or use nothing & let it steep until everything settles). Pour freshly-boiled water over it, letting the bulk of the nettle & seed/bark-ness of everything else handle the heat.

That makes ~24 oz/700 ml, more or less, depending on how you like your herbal brews.

I add local honey because passive immunity works for me, and our local honey is delicious.

There are many lovely anti-snorge teas around. Many come pre-made! Whatever you use, may it be pleasant and helpful.

Quickies, x5: How the doctor-patient situation is supposed to work

Isy / March 5, 2026March 20, 2026 / care team, critical thinking, cultural context, perspective, Quickies, radical presence/radical acceptance, self-care, translating Medical Jargon into Plain English, what works

Chronic specialist care

Once upon a time, I asked my hot-shot pain specialist (I’ve had some real rock-stars) for something heavy-duty and intense (I forget what).

He told me that he wanted to stick with using current meds a little differently and upgrading my self-management skills, because I had a lot of years left and he wanted to keep something in reserve for when things got worse.

This doctor really understood long-term palliative care — palliative care meaning, you’re not expected to recover, so treatment means managing symptoms for as long as possible.

That’s not about dying comfortably, most of the time. It’s about living anyway. Being sick is not the end of life. It’s just a heck of a detour.

He was apologetic and sympathetic, hoping I wasn’t too dismayed and disappointed. I was delighted to realize this physician firmly intended for me to have a long and active life, and was asking me to step up to the plate to help to make it so. I don’t think he realized that, in that moment.

I said to my specialist, “My job is to figure out how to get through my days as gracefully as possible. Your job is to hold the long view for me, and figure out how to manage my care over time so I can get through the years as gracefully as possible.”

He looked at me in perfect stillness for a long moment. For someone who likes talking as much as he does (for good reason; interesting talker), that was weighty.

He asked, “Would you please come to my severe-pain support group and say that?”

Sadly, I really couldn’t drive safely that late and knew I couldn’t get a ride for it. (This was pre-pandemic, so, no remote possibilities.)

It’s possible that he was as frustrated and disappointed that I couldn’t come and say this to his patients as he had expected me to be about the medication. So, Dr. Saberski, this one’s for you!

Emergency visits

The purpose of the Emergency Department (or A&E/Casualty, for the other English-speaking countries) is to figure out if anything is going to kill or disable you in the next 24-48 hours. It’s a very specific remit.

Flare-ups of chronic conditions can creep into that remit, severe pain being very disabling in itself.

However, another condition of mine, gastroparesis, is not a great candidate. The heavy-duty pain meds in the ER are mostly narcotics, which rarely work for intestinal pain and, more importantly, make the intestinal paralysis worse. The anti-vomiting meds may not be better than what your doctor prescribes, although they may be different and worth trying for that reason alone.

ER nurses used to have an effective line in moving stubborn bowels. It seems this is no longer the case. It’s often considered a specialist task, not that specialists do it either. If in doubt, look up “soap-suds enema” and follow the instructions carefully. Stay near a toilet for the next 6 hours as your guts remember their job.

It’s vital to know that dehydration can be deadly or disabling, and the ER is exactly the place to go for treating that. So, if you can’t keep even sips of water down for a day or two, for any reason, and you’ve got the sunken eyes and play-dough skin (pull up a little fold on the back of your hand, and it stays there), the ER is the place to go.

Bodies can’t recover without water. Water really is life.

If your condition requires specialist knowledge to treat, but probably won’t kill you or further disable you in the next 24-48 hours, the ER can be bitterly frustrating, because thats not their brief and it feels unfair to ask them for it when they don’t have the training or funding.

However, it’s perfectly okay to phone them up and ask the triage nurse what to do. I’m an old triage nurse and I loved it when people were “on it” enough to call and ask. If they didn’t need to come in, I could tell them what to do and what to report if things changed. If they needed to come in, I knew they would do as well as possible and I could get them sorted and into appropriate care faster and with a rare smile on my face.

Being deliberately involved in your care is that powerful a message to send to your system. We can’t consciously control our systems, except in nudging things here & there, after specific training. We can deliver primal shoves with our basic approach, with how deliberate and mindful we are about our care.

Urgent care

Urgent Care is where you go if you’re pretty sure you aren’t going to die or be (further) disabled, but you do need same-day care.

Keep in mind that these providers do not have specialist training, but might be able to make a call to your specialist or be willing to discuss what you want from them. I said “might” — it depends on factors beyond your, or even their, control.

In the US, they usually can’t make referrals — except to the ER, if they find that you need further scans or a higher level of care.

It’s not fair to them to expect specialist care. That said, it’s not fair to you to have an inaccessible specialist. Lousy situation.

Primary (general) care

This person is supposed to be the ring-master who holds the ends of all the threads of your care. They’re supposed to take over your prescriptions (unless they’re actively in the “figuring out what works” stage) or you’ve got a specialist who wants to stay absolutely on top of things.

This is the person you usually call for coughs and colds, annual checkups, questions about whether you might need another specialist or different care, and when you want to talk over health care concerns, including confusion with how the system works.

They’ve still only got 5-10 minutes with you, but it’s time well spent if you’re confused or overwhelmed. As ever, note your issues and questions before going in, to make the best use of your time together.

One of the uses of those “talking” visits is for a medication review, one of the best uses of time there can be for us. See the Pharmacist section for more.

Pharmacist

These are the medication bosses. Their depth of knowledge of medications, interactions, side-effects, and alternatives is absolutely daunting. They’re the wizards of meds.

If you’re having symptoms that might be side-effects, this is who you ask about it. If you’re unsure about a new med or dont know what to expect, this is who you ask about it. If you’ve got genetic variants that might affect medication metabolism, this is who you ask about it.

Medication review

If you’re concerned at how many meds you take, talk to your pharmacist first. Then, with the notes from that conversation in hand, talk to your doctors.

This is called a “medication review” and everyone can do it annually, or more often if things are changing for you.

Pharmacists can’t prescribe, because the depth of knowledge about various bodies in sickness and health is the reason why physicians spend even longer in training than anyone else. Most of medical care is beyond medication. It’s why nutrition and self-care matter so much.

The body is its own unique thing and needs its inhabitant to be involved for best results.

In short

Medicine is really, seriously deep and complex. Each of these segments of the health care system is necessary, and none can substitute for the others.

It’s an imperfect system. It should be much better, but, heaven forfend, that might cut into enormous corporate profit margins. Patients, doctors, pharmacists, and every actual helping human has to work within the restraints of enormous corporate profit margins.

Hope this helps clear a few things up!

Quickies: Stubborn CRPS sores? TCM burn cream

Isy / February 27, 2026 / basics, CRPS knock-on effects, injuries & surgeries, Quickies, self-care, tools and techniques, what works

New series: Quickies. Short, practical notes, mostly about things to try for problems with CRPS, dysautonomia, mast cell & histamine disorders, etc.

Problem

I get what my grandmother would have called chilblains: cracks in the calluses around my feet and sometimes on my fingers. Nasty, uncomfortable, and — because they’re surrounded with thick walls — hard to heal.

Option

I’m an old nurse. I know a lot about healing wounds of all kinds. Nothing worked, at all …until I tried Ching Wan Hung, in the copper-colored packaging.

Ching Wan Hung:
Different manufacturers but similar copper packaging

It’s a traditional herbal product with Chinese cinnamon, which smells a whole lot different from the tropical stuff we eat. It also has menthol, which I can’t tolerate normally, but is no problem for me here. I can scarcely smell it, so maybe it’s a dosing or production issue. Most herbal salves bring on menthol like a battering ram.

Usage

I squish it right into the cracks and holes of the sores, rub it in well, then put a dark sock over it for an hour. (It stains light colors.) Then I get on with my nap, or my task, or whatever. I put it on twice a day, before getting out of bed and at bedtime. I should probably use it more often for faster results, but I’m not very good at that.

It doesn’t work for everyone, just as everything else I tried, that did work for other CRPSers, didn’t work for me. It’s another option.

Sourcing

I’ve found it online at the usual places and at my local Asian/ international market, usually in little copper-colored tubes, which is more hygeinic than the larger tub you have to stick fingers into. It’s cheap for what it is, too.

You can ask for “Chinese burn cream” if you can’t remember the name.

Caveats

Use common sense (all my readers are extremely sensible, so of course you will).

If it brings up a rash or makes you wheeze, wash it off well and never use it again. Not for wounds that bleed readily or might be infected. Never use on bites, because mouths are utterly filthy and bite wounds need different care. If you can’t feel the tissues where your chilblains or non-healing sores are, see a doctor about them and follow their advice over mine. And so on.

Disability & commensurate effort

Isy / January 27, 2026January 27, 2026 / activity, adaptation, imp-possible, moving/traveling, perspective, radical presence/radical acceptance, self-care

“Why do you do that to yourself?”

Why would I not? That’s the more pointed question.

I remember being lazy. I was fit, well, and always a little dissatisfied. …This might be the human condition.

I loved to work (still do) but I also valued my downtime, time in the wild, beach time, workout time, hang time with friends. Something like work-life balance, I guess. In retrospect it seems lazy, but my perspective is a little distorted. It’s been decades since I had a real vacation from my current work.

Current work situation

My current work is living anyway, in spite of this suite of deficits and dysfunctions. It doesn’t give me time off. It’s frankly a bit tiresome.

Why, yes, that was a supremely wry understatement. Cackle freely!

If I stuck to doing only the things that hurt the least, stress my system the least, and otherwise rock this boat as little as possible, what would happen?

Would I be more comfortable? Actually… no, not beyond the time that rest is necessary and productive.

Would I get any better? Decidedly not. “Use it or lose it” beats in my mind like a metronome when I’m down too long. If I don’t stay active, right up to current limits, my exertional malaise gets worse. (It’s a real thing: exercise tears the body down, where it would build a normal person’s up.)

Survival of the fittest

“Then, let’s be honest here, do you deserve to survive?”

Most (not all) people ask that more subtly, but it’s a question I’ve faced often. Brutal it may be, but it’s natural.

First, let’s check the wording. The phrase “survival of the fittest” was coined by the economic theorist & philospher Herbert Spencer (who clearly didn’t let clarity stand in the way of a good bumper-sticker slogan.)

Darwin later adopted it, possibly assuming that his accompanying thoughts would be kept in mind. Now we have to specify them: strength, speed, intelligence, etc., are all subordinate to being able and willing to adapt to change.

The point he was making all along is that they key to survival is adapting to change. Not being in shape.

Finches aren’t humans

Darwin famously studied tiny birds on tiny islands to arrive at his insights. They had tiny life spans and tiny jobs. For them, fitness was biological: who got to breed and have their offspring get to breed, and so on ad infinitum? Breeding and brooding are simple markers.

Humans have big, tangled societies with big, tangled networks and big, tangled obligations. It’s not just breeding and brooding, although that can be part of it. It’s work, school, friends, parents, neighbors, politics & policy, insurance premiums, mutual aid, prepping for a blizzard or another record-breaking hurricane. This time of epochal shifts in weather, science, and economics creates a relentless roar of things we need to cope with and adapt to, and a life where breeding & brooding cannot ensure survival, because, for many, the money and assurance of a tolerable future just aren’t there any more. Only appropriate adaptation to change can aid survival.

We’re (almost) all forced to manage so much more than the finches ever could conceive of.

Stating the obvious

What group of people is the best at adapting?

Take a minute. I’m not going anywhere.

Who else but your people with handicaps and disabilities.

Watch what they do, how they manage in the face of an intransigent world and variable limits, how they keep going. It looks like an art form, if life itself were art.

Just the cost of doing business

I’m still absorbing an incident ~12 years ago when a chair-riding friend with paraplegia was driving us in his van, and we had to stop and get gas. I unbuckled my seatbelt and was going to go pump. He waved me down. “Nah, I got it.”

He opened the sliding door behind him, flicked his wheelchair out of the minivan and half-open in one complicated motion, levered himself and the chair into conjunction, and went on about the business of pumping gas from his chair. Then he reversed the process (more or less) to get back in.

I told him that was impressive. Didn’t he mind the effort?

He shrugged. “It’s just the cost of doing business.”

I let that sink in.

Everybody has to do tedious things to get to the next thing they want. It’s the cost of doing business, of getting through life.

Everybody’s cost is a bit different.

Everybody should have the right to choose what’s worth the cost.

“Life, liberty, and the pursuit of happiness” was originally written in bloody-handed hypocrisy, but it’s right and wise to make it true.

Challenging yourself can be fun

With all that said, my insistence on pushing my limits — as long as I can generally expect safe air, food, water, shelter, and adequate rest — might make more sense. Or maybe it doesn’t. It’s not likely to change, especially since I decided last year that life was too short to settle for survival — I was going to chase fun, and see where I found it!

Pulling the masks off in pieces

Isy / September 5, 2025September 5, 2025 / 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 🤣

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.