Expletives can be good

I’ve always been a wee bit daffy, so the additional daffiness of pain-brain, combined with the clumsiness of my brain’s shoddy un-mapping, re-mapping, or possibly dis-mapping of my body and physical environment, leaves my daily life simply packed with faux pas and prat-falls of one kind or another.

Mr. Keaton, clearly making a decision in a moment of pain-brain.

These used to upset me considerably, and I’d try to re-normalize the situation as fast as possible out of the combined distress of embarrassment and fear about the brain-invading nature of this disease.

This morning, I turned away from the counter too fast and knocked over the oil-filled heater. Instead of dissolving in humiliation and anxiety, I pursed my lips, finished what I was doing, and pulled up the heater when I had a hand free.

My sweetie J, as usual, said (without the asterisks), “You f***ed up,” with a unique combination of resignation and relish. (Nobody says, “You f***ed up,” like he does. It’s a gift.)

The more trivial the faux pas or prat-fall, the more pronounced those syllables are. “You f***ed up” becomes more emphatic, the more meaningless the mistake.

It never fails to put things in perspective.

Something I’m going to write about, once I figure out how, is The Flinch — the way that years of isolation, vulnerability, and abuse left me twitching in fear with the least expression of displeasure or annoyance in those around me.

Last summer, my excellent hostess L, who has a magical combination of boundless compassion and ‘no b.s. thank you’, was the first to let me know that I’d become a nervous nellie extraordinaire, and helped me start to retrain myself.

When I moved in with J in October, he let me know, after a couple of weeks of me jumping and flinching and asking permission to use my own damn home, that The Flinch was back and needed to take a lo-o-o-ong vacation.

“You f****ed up” is part of his droll approach to that inescapable fact of life, frustration. It’s part of his gift for surviving with his golden personality intact. He says things like that to defuse feelings before they even start to pile up.

I grew up in New England. Do I need to say more? We don’t defuse … what, feelings? We are very intellectual in the way we admit that we even have any. The first few times he told me, “You f****ed up,” I stared at him in shock.
me, looking absurdly shocked
I’m used to it now. I laugh, or agree “I f****ed up,” or turn it around and say, “Yeah, you sure did.”

I can’t do any of that and flinch.

Long ago, I observed that a good partner was one who handed you the way back to yourself when you got lost in the confusion of life. Simply telling me it’s no big deal is not that helpful — I know in my head that it’s no big deal, but the feelings in this over-torqued, dis-mapped brain all charge ahead nevertheless.

J’s way of showing me, by making the bigness of the deal ridiculous, stops that routine in its tracks.

I f***ed up. So what? I’ve got a fresh pot of tea waiting on the other side of that radiator. And that’s what matters! 🙂
teapot-eaglehaslanded

Share this article:

On sleeping despite all this

This is a brain-dump from a recent social-media post. Since the same question was asked 3 times in one day on my groups, I figured I might as well put it all right here and link …

Stylized image of woman asleep with enormous red and black dress billowing around and supporting her. White snow falls from a deep blue sky

I used to be a night shift nurse and a home care nurse. Boy, do I have advice about helping your body sleep. Pick and choose what to start with and try as many of these ideas as you want, until it starts coming together and working well for you:

* Positioning. (Old nurses and physical therapists can be really good at this — we don’t get to write prescriptions, so we have to go with what really works and has no side effects. Oops, did I say that out loud?) Invest in enough pillows that you can, as needed, elevate appropriate limbs; support your neck; cradle your head; support your back and hips; pad your knees; get your upper body at a good enough angle so your blood doesn’t pool too much in your head; if you’re a tummy-sleeper, this can be really interesting because you need to slant your whole body from the knees up. Positioning, and the pillows/towels/blankets that requires, is generally the first thing to address.

* Have a regular bedtime routine. This gives your body and brain a consistent, reliable set of cues that it’s getting towards That Time. Our too-plastic brains need to be constantly retrained. Mine starts about an hour and a half before bedtime; I would do well to move it up to 2 hours,, as my descent into sleep is iffy.

* Turn off electronics (TV, phone, interwebby stuff) 1.5-3 hours before bed. There are several reasons for this: multisensory stimulation, EM activation, input from the outside world beyond your control, input you need to react to or decide not to react to (all of which suck up neurotransmitters.) All of this cranks up the primitive brain. Mine goes off around 8-8:30 pm.

* Listen to soothing, calming music for an hour or two before bed. I love classical chamber music, especially Mozart, Bach, Schubert, Rachmaninov, Pachelbel – elegant but not too emotional. Soft jazz or soft rock are also good for those who don’t care for classical. The brain patterns readily to music, so this is like free help.

* Speaking as a night shift nurse, I have to say that chamomile tea is the best, bar none, the BEST way to get the squirrels off the wheel. It doesn’t make you feel as “different” as sleeping pills do, so many people under-rate it dramatically. I noticed that most of my patients couldn’t even get halfway down the mug before they passed out completely, so I know it works objectively, even if it isn’t dramatic subjectively.

* Tulsi, or holy basil (Latin name occinum sanctum), is an herb from India that actually lowers cortisol. (It was used to teach novice monks what a calm mind feels like, so they could get it together with their meditation.) If you get that pop-awake in the wee hours, that’s probably cortisol, and tulsi at bedtime can do a lot of good.

* Ashwaganda has similar abilities, but I haven’t used it much so I haven’t studied it. See what you think. Some teas have both.

* All major herbal traditions have herbs that help. Tulsi and chamomile work best for me, but valerian works for others. I find hops stimulating, and wouldn’t go near poppy or belladonna because of my CNS sensitivities. Those with migraines, central nervous system and some vascular issues need to check twice before using some hypnotic herbs… This is well worth discussing with an herbalist, because they can make all the difference if you get the right recipe.

* Melatonin can help, too. There are two ways to use it: at a “metabolic dose”, which means one tablet can last 8 doses, and that’s just to remind your body to do its calming down; or at a pharmaceutic dose, in which case you can experiment with the different dosings available (usually from 1 to 4 mg, I believe.) See which works for you.

* You can also use 5-HTP before bedtime, which is a good serotonin precursor. If you’re on antidepressants, start at low dose and be mindful of its effects; it can potentiate your antidepressants, making them more effective at a lower dose. Being overdosed on serotonin can be counterproductive, as it makes it very hard to wake up completely!

* If nightmares are making it hard to nod off (often the case for me; I can tell I’ve been having nightmares if I can’t make myself calm down for sleep) then lavender oil dabbed onto either side of your pillow can be a real help. Or a lavender pillow, but remember to refresh it as needed. It’s very good for keeping nightmares at bay.

* Get what activity you can, pretty much every day, and stop exercising either before 5 or before 3, depending on your system. Activity helps regulate the autonomic nervous system, especially if you respect the body’s natural diurnal cycle and take enough time to let the neurochemistry slow down at the end of the day.

* Be mindful of your caffeine intake. Caffeine in the morning can be a huge help to keeping the diurnal cycle regulated, but it’s important to lay off it in the later afternoon and evening, because the disruptive effect always lasts longer than the real waking-up effect.

* Be gentle with yourself. Take the time to learn what works best for you. Be considerate of your household regarding lights and noise, so there’s less fallout in the morning. When you’re stuck awake, remember that rest is still restful, even when it isn’t sleep, and do your best with what you can get. If all else fails, make the most of the time, and try again tomorrow night.

Prolly enough to go on with for now… any other thoughts, folks? 🙂

On a lighter note…

toon_dlewis_bedtimeroutine

Share this article:

International group post: Love is portable

The point is this: love is portable. Real, solid love can handle time and distance.

I’ve been saying that for a very long time. I didn’t know, however, that even the formation of love can cover distance. It can cross the globe.

I grew up overseas. Since there wasn’t always a credible, accredited school where we lived, this meant we kids were sometimes away from the family for months at a time. I learned to handle it in a curious way …

I realized, in a deeply personal way, that the same sky covered us all, and the same world held us. If I could see the stars, I felt very strongly that my brothers and parents could see those same stars — if not today because of clouds, then perhaps tomorrow or yesterday — and knowing that we could look at the same stars was a powerful comfort to me.

Beautiful colored view of a star-forming region
Star-forming region in the Magellanic Cloud. Photo from NASA’s Hubble project.

It doesn’t have to make sense, if it works.

As an adult, I got a dreadful disease that requires more research to manage and understand than one person can do in a lifetime. It took me weeks in the Stanford medical library to realize I had something truly rare. Once I was finally diagnosed, it took me months to begin to understand the complexities of what I have.

I also got the internet and a membership in an online pain group … and eventually a blog and social media accounts.

And suddenly, I wasn’t alone.

That first group’s administrator got me through the second major test of survival. (This disease has caused quite a few.) She’s on the other side of the country.

As I’d reached out to her in desperate need, I found someone else reaching out to me in a similar fashion, and she’s a nearly equivalent distance North, in another country.

Then I met the Swede, the Briton, the Belgian, the Icelandic… then Australians, New Zealanders, Chinese, Japanese, more Britons, French, French-Canadian, Dutch, Danish, Mexican, Argentine, and on and on and on. Any country with a health system sophisticated enough to think of, and look for, rare diseases, seems to have people with CRPS.

Let’s think about that for a moment.

OK, that’s long enough. It’s depressing.

The truly international distribution of the disease is almost as penetrating as the international distribution of the internet.
The Earth's winds. Not a bad metaphor. By NASA's Goddard center.
I could go on about the obvious benefits — having someone to chat with at almost any hour is a good one; having such a wealth of perspectives on health, medical delivery, and self-care is another; being able to discuss findings in one country that aren’t yet known in another is a hottie; and, of course, there’s always someone worse off to make me feel humbly grateful for my little all; but these are pretty obvious and probably stated better elsewhere. I’m not doing too well above the neck this week and I have to keep it simple.

This disease has stripped me of many of my friends, my careers (both of them: nursing and software), almost all of my hobbies, most of my strength and stamina, and pretty much every illusion about life and humans that I ever had.

Life can be bleak when it’s this lean. There has to be more to live for than usual, not less, when every day is another stab at the same tedious, repetitious, miserable slog that would make me say to Sysiphus, “Quit your whining, kiddo. Trust me, you’ve got it easy.”
Sysiphus looking miserable as he pushes a rock up hill... with poor body mechanics.
But every connection that I make with my CRPS cohorts makes me stronger. And — how do I say this without sounding mushy or daft — these aren’t superficial connections. I would gladly stop a bullet for my friends, not that that’s likely to happen … but then, it’s easy to find something worth dying for. The trick is finding what, or who, is worth living for.

Any hour of day or night, I can log on and find a soul-sibling somewhere in this world, beyond first-languages and politics, beyond gender and race, beyond anything that might have mattered once.

I don’t have time to ask permission to use names before posting, so my own ethics force me to skip personalization, but the fact is, ladies and gentlemen, you light up my world.
Earth seen from the moon. Earth is gibbous.

When I get discouraged or disgruntled about this tedious, repetitious, miserable slog, and I can’t remember the self-care routines that can help me with it, instead I remember my friends: this one’s Celtic ferocity; that one’s wry wit; the painful eloquence of one; the utter gentle kindness of another; the ghastly spelling over the radiant sweetness of yet another; the shining fragile beauty and boundless courage of, well, all of them …

Every piece I write has to meet multiple tests of integrity before it gets posted: factually accurate, logically defensible, ethically sound, emotionally true (but as the rambling nature of this one indicates, brilliance is NOT a criterion, or I’d be posting a whole lot less.)

That list of criteria has a lot to do with who I think of when I write. It’s this absolutely global, polyglot, brilliant, loving, well and widely informed set of people. Each one of us has our strengths and our weak points, but collectively, we are astounding. Utterly astounding.

I have to live up to that, and be translatable … and it’s an honor and a challenge, every time.

CRPS has taken much, but the internet, mother wit, and a quorum of luck has given me infinitely more. I’m a better being and a better writer because I share the world with people like this … and I’m aware enough to know it.

I have plenty to live for. Screw the slog. Sysiphus, move over and I’ll show you how it’s done.
girl on a flat beach kicking a ball high

Share this article:

Being clear about being grateful

We visited our favorite hot springs last week. There’s a hot pool that’s very hot indeed. When I alternate between that and the cold pool, preferably dipping several times, it becomes quite a fabulous experience.

Stone angel with hands clasped in prayer, standing on a pillar, sun like a glorious halo
Halleluiah!

Whether it’s the lymph getting going properly for a change, or toxins (the few that are left) getting sucked out of my system, or my autonomic system finally getting a clue and just taking a break, or possibly all that and something more, I have no idea. But it can be really good.

gleeful woman grinning, sitting in a sailboat cockpit, sunny water behind her
REALLY good!

I did my dips and bounced gently on the balls of my feet in the hot pool, overflowing with something like gratitude. I’m no fool (I just take an off-road approach to life) … offering gratitude works, even with a conception of spirituality based more on quantum physics than religious dogma.

Things go better when I’m classy enough to express whatever gratitude I feel.

However, it has to be “true enough to write,” my ultimate litmus test of sincerity. (That really is my key phrase when I’m thinking about truth, writing, or both.)

George_Goodwin_Kilburne_Writing_a_letter_home_1875There’s no fooling the All, because I’m part of it and I know the truth, even when I don’t want to.

Letting my head fall back into the welcoming warmth, I thought a moment, letting the feeling swirl through me like water.

Grateful for my life?
I have to be honest (though it may mean I have an inferior soul or something) … I’d love to be. I think that somehow I ought to be. But really, when you get right down to it… too many caveats.

Grateful for this day?
Well, y’know, there was too much of the day left that could go wrong. Experience has been too strong a teacher to make me grateful for something before it’s in the bag.

Grateful for this moment?
Ah yes, there we go.

I felt my spine let go of the last knot.

I could say, without hesitation and with perfect integrity, that I was definitely grateful for this moment. Completely, unwaveringly glad to have it. I was truly thankful for that heavenly bit of space-time I’d found myself in.

Crab_Nebula-crop
Heavenly, beautiful… grateful for it

The moment stretched and smiled and wrapped me in blissful arms. It made me stronger and more content, and I faced the bumps and mild insults of the rest of the day with fairly unruffled peace.

It turned out to be a good day. A day to be grateful for.

Share this article:

Painting my limbic system blue

I’m not used to having TV. I grew up in Egypt, at a time when you only needed to take off one shoe to count all the TV channels in New Jersey. Didn’t even have to put down your real-sugar-sweetened soda to count the channels in Cairo — none of which were in English.

arabic-tv
This delightfully expressive image is from wn.com

J is a more normal American, so between his restoration of normality, and my sense of novelty, we’re delighted to have TV again. His ear for BS is too keen to make sitcoms bearable, so we default to true crime, amateur survivalist, and judge shows, where people really are that idiotic and don’t have to pretend.

A couple of days ago, we stumbled across a show about felons on the lam. I think that was on one channel or another from noon to bedtime, except for the news. It was strangely entertaining, seeing how people fool themselves into believing the false lives they create.

For the past two nights, I’ve woken up in the wee hours from dreams of having done something I knew wasn’t quite right, then it turned out the feds really didn’t like, learning that they were displeased, then discovering they were after me (a mortal issue, since I wouldn’t survive a week in prison), then finding myself hiding and running and trying terribly hard to be clever enough to survive in my decidedly impaired mental state.

This morning, I woke up feeling, quite vividly, as if my limbic system — that set of tiny, nervous parts clustered deep in the primitive brain — was huge, red, and pulsing with overstimulation.
brain_limbicsystem-inflated
I’m no fool. I know how to deal with imaginary brain inflation.

I wrapped a band around it, colored the whole thing a pleasing blue, and gently and persistently cooled and prodded it down to a more reasonable size.
brain_limbicsystem-deflated
I also massaged the point between my eyebrows that my old acupuncturist used to needle when I was too jumpy to let her stick sharp objects into me.
acupuncture-yintang-institutyinyang
When I was calm enough to do my brain exercise that stabilizes my ANS somewhat, I worked it like a plowhorse.

Once I had done that, I was actually capable of noticing how tense my system feels, and could mentally reach the lever that makes that inner spring gently unwind.

Then J brought me a nice fresh cup of hot tea in bed.

mug-drwho-steam
…Oh, heaven!

Then I read this out to him, and he laughed out loud.

Now, it’s a good day.

Share this article: