While marking time do something different

SOMETIMES ALL YOU CAN DO IS WASTE TIME

It drives me batty, but since I need to have 5 bars on my brain to write with it, there are many times when we are in a holding pattern.

This year, at our community’s Bizarre Bazaar, we acquired furniture, and this is the armchair I selected from what was available (otherwise we would have had to go shopping) when the rocker/recliner we bought back in 1986 when we acquired our first child had decided not to stay put in the reclining position, and I got tired of watching TV with my arms over my head to keep my center of gravity far enough back to stay lying down.

We paid the princely sum of $85, and had it delivered to the apartment, and plunked in front of the TV.

We knew from examining it in the days before the bazaar that it had an electric control in the pocket, but nothing else.

Hidden treasures at the bazaar

We didn’t know we were acquiring a Golden Maxicomfort Power Lift & Recline Chair, retail value new at almost two grand.

It had been very gently used, almost not used at all. No signs of wear.

I picked it because, in the cramped display out in the front courtyard, it was comfortable. And that was all we could tell.

The spousal unit, after figuring out we had something different, went online and snagged the manual (the electrical engineering certification for the owner is only a suggestion).

It comes with TWO – count ’em – power blocks and two controls. The silly thing has BATTERY BACKUP – in case you have a power failure while seated, the battery has just enough charge to lift you ONCE.

It will do any position from horizontal with your feet higher than your heart to gently standing you up to get you out of the chair.

Never in my wildest dreams would I go out and spend that much money on a chair for myself.

Kids?

This is the kind of chair the children buy for dear old dad.

It has a Zero Gravity-like position – everything gently supported.

It has what they call a Trendelenburg position, with your feet higher than your head and heart, and which stretches your lumbar region.

If I’m uncomfortable, I push a button and shift position a bit.

More?

One of these days I need to get me a decent DESK chair, as I spend most of my days sitting at the computer, trying to write something.

But meanwhile, you can imagine me stretched out for a couple of hours in the evenings watching The Handmaid’s Tale or Mom or Humans.

Still fiddling with the dosage of the low-dose naltrexone, and waiting for the brain fog to clear.

And managed to get several doctor appointments successfully navigated (but leaving the house for them is one of the reasons I have no energy for writing fiction), plus show Maggie off at the U. California Davis hospital in Sacramento (NOT Davis), to admiring glances from medical personnel. They have VERY long corridors in that hospital, and it would have been an even more exhausting morning had I had to navigate them with a walker.

So that’s it.

I’m at the writing position, internet blocked, several hours EVERY day, and some times we make a bit of progress, but the bars haven’t been there much.

It’s temporary, I’m sure, or I’d be panicked. I have this feeling that when the meds settle in there will be a big burst of productivity. So I’m hanging in there for now.

Even the tone of this post feels as if there were a damper on the brain.

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Oh, and some totally unknown person bought a paper copy of Pride’s Children PURGATORY, which always surprises me.

Hope they will leave a review some day so I find out who it is.

I do love the interior formatting of the paper version – because the ebook is limited to fonts the reader can manipulate easily. Check it out in the Look Inside feature at Amazon.

And pray. I’m soldiering on with this LDN experiment, but it’s not guaranteed to clear the brain fog. I will probably have to get super strict with the low-carb diet. And stop slipping up.

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The jump cut in writing fiction

TRUST YOUR READERS

This one is sort of new to me. New to my consciousness.

Because a reviewer pointed out something, and I hadn’t realized I do this all the time, and I like to make things clear to myself.

“…Too much seemed to be going on and I was having difficulty following the plot….”

Thing is, I must have picked it up from all the stuff I read in my life, and I have my own preferences which have developed out of all that reading, and which I expressed in my own fiction.

Baffled?

I will now proceed to make that clearer.

Novelists manipulate time.

Again: NOVELISTS MANIPULATE TIME.

We decide for you what the interesting and important parts of a story are, and how we will present those to you, and especially, in what order we will tell you the story.

And you may disagree with our decisions – and perforce not read our stories – but you can’t really change the story (skipping for the moment ‘choose your own adventure’ stories).

I am rarely intrigued or persuaded by novels which bounce back and forth in time, mix two or more storylines together, or switch focus from characters I have invested in to some place else. So I won’t write them. There are plenty of writers who will do that for you.

I even warn you.

If you saw the calendars and spreadsheets and lists I carry for Pride’s Children, you’d wonder when the invasion was.

I have to know when every child is conceived.

How long someone took to get out of high school.

What day of the week someone died.

When the Memorial Day celebration fireworks are set off the Friday night before the actual holiday.

I very clearly label each and every scene I write, and that’s right there in the book.

DATE; TIME OF DAY; PLACE.

But the reader doesn’t need to know all of this.

The reader just has to know it somehow ‘feels right.’ That there is a hand on the tiller. That there is, somewhere, a reason for how the story is fed into the brain.

And, more importantly, that the emotional journey will be always forward (okay, the kind of emotional journey I write).

Modern writers save you time.

Older movies and TV shows sometimes showed actual clocks with spinning hands and calendars with days/months/years being ripped off one by one.

Now there probably isn’t a viewer on the planet who isn’t comfortable with the jump cut: you are there in one scene with a set of actors doing something, and, literally one frame later, are somewhere completely different with different actors doing something else.

I even tried to stop the process, to see if I could catch the jumps, and I kept getting pulled back into the story.

My job is to write YOUR emotional journey.

And that journey is going to have some very intense days when a lot happens – with long or short periods in between where all that happens is dinner and laundry. If I waste your time with laundry, you can be sure something very important is buried in there somewhere, and the purpose is NOT to confuse you, but to plant a seed that will give you the pleasure of discovery – some planned time in the future.

Why? Because I write long, and I edit intensely, and I take out everything that I possibly can – and the books are still going to be goat-gaggers.

Because I trust my readers to be the kind of people who can handle it.

Want to handle it. Choose to handle it.

My favorite reviews state things like:

I cannot recommend this book, this trilogy, highly enough – but not to everyone. This is a book for readers who appreciate literary fiction and a very deeply developed romance with a thoughtful debate on ethics. I believe the pace and the delayed gratification will frustrate many modern romance readers who look for fast-burning romance, titillation, and simple love stories. However, if you are a reader who will appreciate a modern ‘Jane Eyre’, this trilogy is for you.

If you like insta-love romances this is not for you – however if you love detailed, meticulously crafted sentences, strong realistic characters, and an intricate story telling style you are going to love this.

My own pet peeve – with novels and with the world – is the new trope that men and women approach intimacy and love the same way, by hopping into bed. As soon as possible after they meet, and before any of that boring talking.

I just don’t believe it – it leads to reams of pretending. And there has to be something written that is for the readers who don’t believe it, either. Because there’s plenty of the other.

So trust me…

If it’s in there, if you don’t understand it quite the instant you read it, that okay because you are going to get it just in time.

And the jump cuts? That’s because I really don’t want to bore you with anything that doesn’t relate directly to your emotional journey.

There won’t be any explaining. You are smart – you don’t need it.

And you’d pillory me if I wrote it in.

What say you?

PS I’m not sure what’s going on with comments, so copy yours before you submit them, and if they don’t post, send them along to me in an email to abehrhardt@gmail.com, and I’ll post them for you.

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Thanks to Stencil for the free account to create images with (the words are mine, the pictures theirs). If you use a lot of images, check them out.

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Pride’s Children NETHERWORLD is coming along nicely, and the brain is working every day again, but it’s still a lot of slow, careful work. I know where I’m going. And I think my kind of readers will like where it ends. The joy of writing has returned.

Meanwhile, the Pride’s Children PURGATORY – BOOK 1 – ebook is available on Amazon, as is the print book which is currently showing about 99% of the pages in the Look Inside feature; they tell me it will be fixed ‘soon.’

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New after a year Low-dose Naltrexone

I WOULD RATHER SAY I’M WRITING REGULARLY

but the reality is different: and I have a temporary good excuse.

BTW, WordPress is giving me a hard time here, but the photo above is a picture of one of the coffee bean plants I’ve managed to keep alive since they were given to us by one of our new neighbors (as babies). I guess you could call them toddlers now.

I’ve named them Castor and Pollox. One of these days I will figure out which is which, but they came out of the two halves of a single coffee bean, so they will always be twins.

Our new place faces north (we picked it that way so I can sit by the window every day), but there is an indentation, and there is a window ledge which gets sun in the morning. The plants have been much happier (How does a plant display ‘happy’? It grows.) since they get some morning sun, even though coffee plants grow best in shade.

They get the same treatment my houseplants did in New Jersey: if they live, I water them once a week or so, and they are allowed to continue living.

This is true of the twig that came with a flower arrangement a while back – because it had perky green leaves, I continued to water it, and I think it’s still alive, probably with some rooting going on in the block of florist foam that holds it. One of these days I’ll plant it. If it’s still with us.

Something has changed since the move.

There are a lot more people here, and trying for a minimalist experience – having dinner several times a week with new friends, is challenging for someone like me who used to try to limit leaving the house to twice a week.

Because I now have the pools (have to use them on these hot summer days) and the adult trike I just bought from a resident who is 91, and isn’t planning on riding it any more.

And an occasional concert. And a Mass/communion service twice a month. And a very occasional resident’s meeting or management/resident meeting or…

It isn’t the time commitments

And the occasions are all pleasant, not too taxing (for the normal person) and something to do.

Plus the many decisions (we bought new mattresses!) involved in having a new home (I got the new doctor, after about a HUNDRED hours over four weeks, to give me the exact SAME pain prescription I’ve been using for fifteen or more years).

I still don’t have a California driver’s license; it’s next on the list. I think.

But the time commitments have been far more than I had before.

And I’m trying to keep up with a few friends back home, and my family in Mexico.

What I’m trying to say is the brain isn’t reaching writing strength

as frequently as I need it to.

For as long as I need it to.

I sit at this computer every day, doing all the things that usually worked in the past – blocking the internet, taking B-1 and B-12 (I’ve now added a Vitamin C pill), pacing and taking naps as needed, trying not to eat carbs (they mess with my mind – but I had dessert last night).

But the creative brain isn’t clicking on, and when it does, it doesn’t stay on for long.

I think it’s tired of me diverting its output to mail, doctors, phone calls (necessary), minor new things, major new things, and legacy stuff.

To give the ol’ brain some help

I’m trying the last ME/CFS managing trick I had saved for a time like this: Low-dose naltrexone (LDN).

It has helped many people with ME (and other things) function.

I want less brain fog.

But it may eventually help with pain and sleep and possibly some of the exercise intolerance, and maybe the orthostatic intolerance. I dunno.

I’m taking it for less brain fog – and there are no guarantees.

It was prescribed to me by a neighbor/doctor who used it with his patients.

But back in New Jersey I could still manage to write

Most of the time. Slowly. By not leaving the house. By doing almost nothing.

And you don’t mess with what works.

So I’ve had the capsules for two years without trying them.

Brain creativity doesn’t seem to be coming back, or not fast enough, or strongly enough.

Thing is, there’s a ramp up period for LDN

To avoid side effects, and overdosing, the recommendation (I have a nice FB group with supportive knowledgeable people) is to start very low (0.3mg for me), and not increase the dose more often than about every two weeks IF you aren’t having continuing bad side effects.

Because I AM having (minor) side effects – when I change the dose (so far twice). And one of those is disturbed sleep – until you get used to the dose!

All I can say so far, after a month, and two steps on the dosing schedule, is that I’m tolerating the LDN.

And that there seems to be a positive effect on several areas, small, but I can’t REALLY tell yet, and, though I can work a bit longer at a time (‘work’ defined as ‘butt in chair’), I haven’t gotten enough better yet in achieving the level of brain functioning that I need to write reliably.

Something extra: it may help with walking, some, by diminishing the pain walking now causes.

What does the future hold?

Dunno. And LDN is NOT a cure for CFS or POTS or any of the other symptoms. Especially it is not known to be a cure for fatigue or exercise intolerance.

I have plenty of time – the move was the correct solution for so many things: social isolation, shedding the requirement for house and yard and vehicle maintenance, being prepared for when we need higher levels of care (it’s downstairs, and people there are still part of the community), better weather, exercise facilities (for my poor joints and muscles)…

My best hope is that these hours on the computer will start being my happy time again, my functional time, my ‘she has a brain’ time, and NETHERWORLD will get finished and published.

I’m spending a small amount of this current time in promotion – getting more reviews – and hand-selling. I will tell later if anything comes of any of it.

But there has been a LOT of change, and it takes time to absorb change and to adjust to a new system of everything.

I’m on it.

It’s slow – but I hope it will speed up soon.

And I’m still writing every day – yesterday I watched Bollywood wedding dance videos. For NETHERWORLD.

And how are you?

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Plot quirks as much as holes

AND HOW WOULD YOU KNOW?

‘Missing’ is an odd concept

For a visual or graphic artist, there a billions of colors – digitize the spectrum as finely as you like to get as many distinct numbers as you need.

Of course, you can’t use them all.

And at some point the human eye can no longer distinguish between the shades.

A complete scene is another odd concept

That’s where the art comes in, for each writer, in deciding how much stays, how much is irrelevant (including whether or not to use scenes at all, but that’s getting a little too experimental for me).

From January 2013 comes an answer that turned my brain topsy turvy:

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Upending plots to find holes

I had an interesting experience recently which gave me ideas about finding – and solving – plot problems. In the course of playing too many games of Free Flow on DH’s new iPad mini, I solved all but a small set of the 14 x 14 levels included. It irked me that, no matter how many times I went back to the remaining small unsolved set, even starting completely from scratch, I couldn’t find the trick to the solution.

A minor problem, you say. Agreed. But games can be useful (I know – this doesn’t justify all that time spent gaming) – or humans wouldn’t have invented them, and wouldn’t get so much stroking from them, so much pleasure, that they can become addicting. There is a sense of completion that releases endorphins and other good brain chemicals when a puzzle is solved.

So, I continued to come back to this set of unfinished puzzles.

But it wasn’t until, in desperation, I turned the iPad upside down that I found my answers: even though I had started each level from scratch, the orientation of the dots (you are trying to connect each colored dot with its mate in such a way that all squares on the board have a color in them and NONE of the squares is EMPTY) had locked into my brain prematurely, and I literally could not see them in a different way.

It actually HURT my brain to turn the iPad upside down, and to view each puzzle WRONG – but in a new way.

I told myself anything that made my brain hurt must be good for it (on the theory I hold that the brain is a muscle-like object, and it must be exercised).

I deliberately tolerated the stress – and quickly solved the remaining puzzles I had been struggling with for more days than I care to admit. Immediately. The skills I had developed for this particular little game had settled too soon into working on the default orientation – a technique that got me successfully through most of the 750 puzzle levels that came with the game – but not all.

I’m doing something similar with the scenes I’m revising now:

I have text for these scenes, text that I like, and a flow through the plot that strokes my brain (we all write, first, for ourselves), but it isn’t good enough.

Revising in place, just taking the words that are there, the order of words in a scene, and making them better, is good and useful and satisfactory – after all, I worked hard to write them originally.

But it doesn’t solve all the problems. I’m stuck, in some scenes, with a feeling that I haven’t done my complete job, that there are unexplored empty ‘squares’ on the grid. A feeling that if I notice a tiny void, a reader will, too. My brain hurts.

But the reader can’t fix the problem. That’s my job. If my writing isn’t satisfying me, it has no business going out into the world.

So I’ve been taking the elements of a scene, and going back to ‘start.’ Rearranging the order, re-thinking, re-visioning.

Letting my brain hurt.

Turning the scene completely upside down, asking beginner questions: What does this scene do? Why is this scene in the book? What can the reader only learn here? Even, Why the heck did he do that?

I’m hampered by the fact that I can – as an end result of many years of reading – turn out clean copy that LOOKS finished with relative ease. And once it is fixed in black and white on the page, it is very hard to question what looks ‘published.’

It takes time. It isn’t strictly necessary.

But if I identify the plot problems – the little bugs which irk the brain – those empty squares – and solve them, I get the endorphins. And a scene I have to admit is vastly better.

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The interesting part has been that I have found extremely few places where I want to go back and change something in PURGATORY – which I just finished rereading.

Apparently, once I’ve got it, it locks in, and then it’s real, and I don’t need to go back. I didn’t think it would be so.

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How about you?

If you’re a writer, do you find a strong stop for each scene – or do your scenes make you want to get out the editor?

If you’re a reader, can you tell when something is finished?

Just curious.

Remembering an old and dear friend

WE HONOR THOSE WE REMEMBER

As I was going through old posts you may not have seen, I came across something with current applications, as well as remembering that day in Princeton when we put our friend (mine from our CFS support group and the Princeton Folk Music Society) Dr. Paul Whiter’s ashes into the memorial garden at the Episcopal church:

I was reminded of the fourth vow some Christian monks take in addition to their other vows of poverty, chastity, and obedience, the vow of stability, of staying in one place for the remainder of their lives. Thomas Merton wrote that it meant giving up the hope of finding somewhere else more perfect, and settling in, for life, to the ordinariness of the chosen place.

As fascinating, intelligent man, he would have enjoyed the community we have joined.

He touched many lives, with a gentle spirit.

From April, 2013, when we had just lost him: Words are my memories.

Being a quirky writer for yourself

I WILL BE A QUIRKY WRITER

Especially because I may write few books in a lifetime, where the fiction push started late, and already ill when I began writing, I have to make the books count.

There will be a shelf next to my bed in the last place I live, and the books there will have to be what I wrote – and what I love.

But it’s quirky in an odd way. Either a reader will like what I write, or not be of my tribe.

That’s not so unusual: all writers have a tribe, once they’re past a certain minimum of quality that they can stand to put their name on nom de plume on.

Or they wouldn’t keep writing.

I write in blood

But I will never write to market. Never mind that I can’t – writing to market takes a lot of energy. I don’t want to.

Now that I’ve moved, I never have to write again. There are a million things even I can do in the new place, and they all take energy, and they are all a lot more fun than writing.

And then one person comes up to me at dinner, and tells me how much she loved the TV talk show scene, and I’m hooked again, on the dopamine that comes only to writers who have done their best, and have been rewarded, and have no internal regrets about skimping.

I honestly don’t want to go back and change a single word in PURGATORY. Which is good, because it would be an incredible amount of work.

But it’s also making me insecure about picking up the metaphorical pen again, because I haven’t been able to finish the one scene I’ve been working on since before we moved.

So much is riding on this scene

Plot, characters, theme – everything is going through a knot.

Everything is getting kicked up several notches.

Because the middle book in a trilogy needs that.

And I had no idea it was this one place I would have foundered for a while, no matter where I had been, until I started writing and realized how many threads I held in my hands, how many things go from before – toward the end of this book, and the end of this story, and how critical it is to get it right.

I think my subconscious knew, and my brain protected me.

So I would have time to consider what I’ve set out, fully.

I can’t wait to get to these ends, but the path has to be lit and leveled and have the right slope and the best edging and a solid underpinning of rock.

Because it leads toward high cliffs, and I would rather my characters (whom I’m very fond of) found resolution almost any other way. But there is none.

Glad I got that off my chest

And may your New Year have that kind of pull on you.

Once you get over being afraid of heights, the view can be amazing.

Over to you: what’s in store in 2019 that you can’t wait for?

 

Making things worse to make them better

SOMETIMES YOU HAVE TO BREAK THE MOLD

to get to a bigger, better place.

The mold is a comfortable place.

Okay, not so comfortable: it has flaws. You are just used to the flaws.

Until the day when the flaws add up to something so large it can’t be improved.

Only destroyed.

I’m trying to get settled in the new, larger mold.

It’s just taking a lot more work, and a lot more time, than I told myself before the move (if you don’t do that, minimize the cost of the change, you can never get unstuck from the mold).

If you focus too hard on the cost of change, you don’t change. You CAN’T change.

Because change is very expensive, and not just in money.

I’m impatient.

Everyone tells me to ‘give it time,’ and tells me how long it was before they were settled in our new community, before they had unpacked all their boxes, before they knew enough people, before they reconstructed their new life.

But after the change, the invoice shows up and demands to be paid.

As the pain of the move diminishes, and becomes, like all memories, a series of amusing vignettes you recount at the dinner table to people you hope will become new friends, and whom you are now entertaining so they will know you’re not just a complainer (deadly) or a bore (deadly), the pain of the new become more evident: you are not there yet.

For me, it has been the amount of time I am still not writing new fiction.

I’ve spent a decent proportion of time with the internet blocked off, NOT writing new fiction.

Yet.

I sure hope it’s ‘yet.’

You see, I also moved to improve the body.

I have started the PT I so desperately wanted, and which was one of the main reasons for coming to this particular place. PT is downstairs. An elevator ride and a couple of corridors worth of distance.

And next to the pool, so I can just pop into the warm water afterward, and then take a nice shower, and then…

Go back to the temporary home and find myself completely ragged out for the day.

And the next day the sacroiliac joint has given me a day of intense deep aching. So I do the exercises for that…

It’s necessary. Now is the best time. And it has plopped the next barrier to writing right in front of me.

People recommend patience

and not being too hard on myself.

And not expecting too much, possibly even now, since we’re beginning the process of working with Facilities to fix our permanent abode in Independent Living from being gutted, to having a place for everything and everything in its place, a state we are NOT achieving here (doesn’t feel worth the work when you’re going to have to do it all again soon).

But they don’t have the itchy feeling of how much of my identity is tied up in being a writer – and actually writing.

So many accomplished folk here, with long resumes of happy productive lives, whether involved in work for pay or in bringing up happy and successful children, and it serves to emphasize the many things I could not do due to illness, the may experiences I will now never have.

I didn’t expect that part.

Many of them are still doing the wonderful trips and community service and voter registration and visiting schools…

The ones who are past that are often quite a bit older.

And even the ones who are now disabled who are living here often have not been that way for long.

Only now I meet more people than in my previous isolated state

and have had, metaphorically speaking (and without any ill intent on their part – this all comes out in conversations), my nose rubbed in it.

I used to be better at ignoring the fact that I was ill and isolated, and the rest of the world had lives. Problems, yes, but lives.

By a determined cheerfulness in my own life, so that I did not alienate those I still knew, I kept the worst of it under wraps most of the time. It gets very boring to listen to complaining, however justified. I preferred to spend my time with my husband, far-flung kids, and small coterie of friends enjoying their presence and company when I had it.

I made ignorance – avoidance – my bliss.

And I wrote. Things other people can’t. Don’t. Don’t even want to. But which make me unique.

And clamped down on envy as unproductive.

I’m confronting all this a third time.

Fourth? Fifth? All in a bunch, everything repressed comes back to be dealt with in a new stage of life.

I really hope it’s the last time. But it can’t be.

It gets boring, even to me.

The light will return. Proof of that is that I keep trying. If I’d stopped trying, I’d really worry.

This may be one of those raw adjustment times you put behind you once things are to a new normal. But it’s daunting to think it may total a year by the time we’re in the ‘forever home,’ and I get back to really working.

Another very good sign is that I’m aware of it. I’m not happy about the uncertain period, but I still crave writing something coherent, and even more, writing something I’m satisfied with. I know I’m not where I want to be, and that the steps we’re taking should, with a bit more of that patience stuff, put me in a better writing place.

Life moves on, inexorably

I’d just like to think that the effort for change results in a better working environment, and is a net gain.

Ask me in a couple of years.

Meanwhile, this is a recording of the current state of mind.

I have gone back into my own posts, that now number well over 500, to find things I almost don’t remember writing – and I only started blogging in 2012!

Nothing very new yet

except that I realized how sparse even the blogging has gotten, and feel compelled (by me, not my lovely readers and commenters) to put out at least an update+what I’ve been thinking post every once in a while, until I have more substantive ‘content.’

And, looked at in hindsight, there has been an awfully large amount of change survived.

Please pray for rain for California, and no rain in some other places – that has been, after the elections, another huge concern: we are right in the plume of the Camp Fire, and yesterday were in the ‘hazardous’ category. Worrying about the firefighters, and all those who have lost lives, family, and homes. And wildlife. And what happens after.

And, as usual, not being able to do a darned thing.

Be well. Write when you have a moment.

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Give us this day our daily pain

WORTH OFFERING UP IF YOU’D GET RID OF IT?

Some days, if I squint at the daily/morning skeletal pain and muscle pain, I can call it the result of not stretching, or even ‘stiffness’ or ‘mild joint pain.’ synovial fluid in the joints needs to get moving, and the joints themselves have adhesions – everything’s, scientifically speaking, gummy.

Some days it’s worse than others. I don’t like it, but I can handle it.

But this morning, while resting in extension (like the Sphinx) on the floor, I was marveling that I’d never noticed that ‘Give us this day our daily bread’ from the Our Father has one of those little cross-linguistic glitches – the word for bread in French is pain.

No rhyme or logic to it, just a noticing.

The saints offered their pain up.

I’m not saintly or heroic, but I can do the same thing, try to handle every day with as little medicine for pain as possible (to ease the load on liver and kidneys in getting rid of the byproducts). I can ignore some of it, and a special seat cushion takes the brunt off, but there is usually enough left to be, well, significant. Too bad, and I say, “The heck with it!” and try to find something that won’t leave me groggy but will reset the brain.

Above that level, there is the way it takes over, and you do nothing else until stretching, isometrics, yoga, and chemicals are allowed, even if I end up not being able to think.

I feel for my friends who live with a lot more than I do – I had that experience as a side-effect of the various cardiac meds: every single one of them raised the pain to the I can’t think of anything else because I’m dealing with pain level. Glad the new cardiologist decided the benefits, if any, weren’t worth the consequences. Not that I would take them now, but it does help to have at least one doctor who’s okay with that; really reduces the stress.

I don’t understand offering pain up.

I’m not good at those theological bits. I don’t believe God gives other people pain or suffering that is waiting for me to offer my pain to be removed. But pain does teach you a lot about self-reliance, and getting help, and the limits of what you can take and do. Many people reduce or ignore what others magnify. I don’t see the point in taking on more just so you could offer up more. Seems like there are no good limits on that.

I do offer up acceptance and patience and such. I don’t ask Why me? because the answer is Why not me? if there’s going to be any at all. Not often, anyway.

I’m scared it will escalate – and I won’t be able to do enough to ameliorate it to the bearable level. I don’t think I’ll get rid of it any more – it’s too constant a companion.

I’m a wuss: I offer it up, but will do everything possible to get rid of it – at the same time.

Is the gift worth your LIFE?

ONLY IF YOU HAVE TO

I wake up angry too many days.

Then I spend time getting myself at least back to neutral, because I live with other people, and it isn’t fair to them to have to put up with me in that mood, unless I have no other choice, and we already know I have a choice, because I have used that choice successfully every day for many years now: figure out how to, today, and get over yourself.

Every day I berate myself

Because I don’t get to work sooner.

I sit at my computer, and end up checking out whether anything has changed in the world since I forced myself to go to bed last night. Now that we have online subscriptions to the Washington Post and The New York Times, I do a quick flip through the headlined new articles, to see if anything needs my attention.

I remember the comic (xkcd, I believe) about how someone can’t go to bed because the internet is broken.

I know it’s partly physical: for some reason probably related to illness, the brain comes on slowly, and usually doesn’t really focus on anything mentally challenging until after first nap. That baffles me, and scares me, because I have to drag myself into that first nap, too, always convinced before I do so that it won’t help, that if I could just force myself through, block the internet, START working I would now be fine for the rest of the day, and I’d get everything done which never gets done.

Every day I test out my mental speed by doing hard sudokus: under about 6:30 minutes, I can probably do something useful with a small effort; over that, and I can’t usually write, and, worse, make mistakes of epic proportions (luckily Scrivener has snapshots and I do backups erratically but so far successfully). Those scare me – when it takes you a month to write a scene exactly the way you want it, and you think you have deleted it, well, it’s not a pretty feeling.

Nothing helps until somehow

The process starts up by itself, if it’s going to that day.

Many days it doesn’t – and I am helpless to understand why. Because it seems that other, equally stressed days, work.

I laugh when I see people suggest taking days off: it takes me so long to get back to where I was when I’m forced by Life to do something else for a few days that I am pretty sure I won’t make it back to writing ever.

My brain is on instructions to at least try every day, and, indeed, I have no idea what I’d do with a day taken off deliberately from writing.

Back to the ‘gift’ I’m writing about

And that gift IS writing.

Not that I have any choice in the matter, it seems, but the writing, as it is now, is the result of who I’ve become.

And that’s the question: if I had to choose, and I had the Hobson’s choice of writing what I do and being sick, or neither, would I value what I’m writing enough to choose illness if that were its price?

Is one single story – if that’s all I manage – worth a life?

Is LoTR worth Tolkien’s life, GWTW Margaret Mitchell’s? And why classify myself with them (and neither was ill). What about ‘Barbie Takes Manhattan’? Or ‘Bridget Jones’ Diary’? Or ‘Harry the Cat’?

The choice is an illusion

I have children and a husband – they come first.

And, as soon as they don’t need me this instant, I try again to focus.

I took my nap, am more awake (though sudoku still says well over 7 min.), and I come back to the same question: is this worth writing? Is it worth my life? I’m not sure what the answer is, but it certainly is what I want to do with my life, with the energy I get, with the time I spend/waste every day.

I didn’t make this choice – it chose me. Somehow. Like the other gifts in my life, I’ve found myself nose deep in the pool whether I liked it or not.

By standing on tiptoe, I manage not to drown. And then another day comes, and another task, and I find myself, on the good days, inside my head walking Kary and Andrew through an exchange, planning exactly how Bianca will take the next step, knowing what is coming, but not exactly how the words will play out yet.

And wishing I could speed it up.

What did you get for Christmas?

The same old thing.

I don’t want a pony.

But I want this. And if this is the price, yes, bring it on.

Hope you got what you wanted.

---

 

PTSD from medical trauma is REAL

I HAVE PTSD

And I shouldn’t have had to diagnose it myself.

I still find it unbelievable that, in all that has happened to me since the chest pains Feb. 4, 2017, not one medical person has 1) asked me how I was doing mentally, or 2) warned me that I was at risk for PTSD.

I even, at one point recently, called the cardiologists’ office, and asked if they had anyone on staff who handled, you know, the psychological side of things. Nope.

I do want to state first and foremost that I am grateful to be alive. Grateful that medical personnel eventually managed to figure out what was wrong with me – a 95% blocked artery that was causing the chest pain, I assume, since the pain went away when they finally put that third stent in on the third catheterization in two weeks. It would be churlish not to be grateful for being alive.

I am also lucky to not have been visibly damaged – no heart surgery scar, for example.

It doesn’t help.

‘Trauma’ includes medical trauma

There are a lot of websites out there dedicated to what I’ll have to call ‘classical’ PTSD: the reaction some soldiers have to being in combat, the reaction some people will have to being raped or mugged. The classical form, if I may, includes things like flashbacks and nightmares, and has been popularized on TV as almost an alternate reality, where the person with PTSD almost has an excuse for overreacting to loud noises by re-enacting the original trauma.

But medical procedures can be intensely stressful, and medical procedures done on an emergency basis even more so.

A couple of quotes might help:

From Medical Disorders as a Cause of Psychological Trauma and Posttraumatic Stress Disorder:

Research has increasingly targeted serious or life-threatening illnesses as traumatic events, and a growing literature on PTSD among medical patients has developed (e.g. cancer, myocardial infarct, HIV diagnosis).

and

From When Treatment Becomes Trauma: Defining, Preventing, and Transforming Medical Trauma

Trauma experienced as a result of medical procedures,
illnesses, and hospital stays can have lasting effects. Those who experience
medical trauma can develop clinically significant reactions such as PTSD,
anxiety, depression, complicated grief, and somatic complaints.

Women are more than twice as likely to develop PTSD

The numbers in general are 10% of women and 4% of men will develop PTSD during their lifetime (fuzzy numbers – not sure of the PTSD definition used), which probably reflects that women have more stressors such as problems associated with pregnancy (Caesareans, miscarriages, and even ‘normal’ birth can be quite traumatic) and rape, as well as being socialized to ‘not make a fuss.’

From Facts About Women and Trauma:

Although the majority of individuals will be able to absorb the trauma over time, many survivors will experience long-lasting problems.

Approximately 8% of survivors will develop Posttraumatic Stress Disorder (PTSD).

Many survivors currently living with PTSD experience symptoms that are both chronic and severe. These include: nightmares, insomnia, somatic disturbances, difficulty with intimate relationships, fear, anxiety, anger, shame, aggression, suicidal behaviors, loss of trust, and isolation.

Psychological disorders may also occur in conjunction with posttraumatic stress including depression, anxiety, and alcohol/substance abuse problems.

…

Research indicates that women are twice as likely to develop Posttraumatic Stress Disorder (PTSD), experience a longer duration of posttraumatic symptoms, and display more sensitivity to stimuli that remind them of the trauma.

And cardiac events in women can be extra stressful

From the HeartSisters blog (where you can find a large number of articles by searching for PTSD):

By the latest account, one in eight heart attack survivors experiences a reaction called post-traumatic stress disorder (PTSD). Although PTSD is usually associated with extreme trauma such as war, rape or a natural disaster, heart attack survivors can experience the same key symptoms: flashbacks that occur as nightmares or intrusive thoughts. As a result, the survivor actively tries to avoid being reminded of the event and becomes hyper-vigilant worrying that it will happen again.

It’s a high price to pay for having your life spared.
…
In the three studies that reported clinical outcomes, heart attack survivors with PTSD had double the risk of dying or experiencing a second heart attack as those without PTSD. The work was published online in the journal, Public Library of Science One.
…
Identifying PTSD early is an important step to coping with it. The sooner treatment is started, the more likely it will be successful.

My own risk factors should have warned someone:

Since my energy runs so low from CFS, almost anything extra will overwhelm my already-limited coping skills. I cannot suddenly manufacture more energy to cope with a crisis.

For whatever reasons, I experienced a particularly clumsy set of medical procedures which took over two weeks, three cardiac catheterizations and a nuclear stress test, and nine days in two different admissions to two hospitals each time, before they found and stented the right arterial blockage. Instead of going in for chest pains, having the catheterization, and waking up with the proper place stented – which should have happened on the first two days, the procedure was prolonged beyond anything reasonable. I still have no satisfactory explanation for this.

And, because of the same CFS, and which I warned them about, I have had a constant and continuous string of side effects from the medicines prescribed – and eventually withdrawn. I told them I always overreact to meds, and usually can’t tolerate them, but I was required to prove that by doing so. Did I get smaller doses than they would have given someone else? I don’t know. What I do know is that my body has rejected every drug so far with violent side effects, physical AND mental, and I am still experiencing some which may be related to the last drug they really want me to take (we’ll see about that).

‘Opinionated, over-educated female suddenly experiences total loss of control’ – that would have warned even me! Loss of control, by the way, makes any of the ‘consent’ forms I signed under those conditions meaningless. As well as the fiction that you actually get to choose any of what happens; I found that fiction – unwillingness of the doctors to say what I should do as if they stood behind their ‘recommendations’ – added incredibly to the stress.

Introvert suddenly having to deal with literally hundreds of new people – duh!

And the unfortunate major side effect that the meds kept me from using my main coping mechanism for stress: 3-5 half-hour naps/rests daily during which I spend most of the time doing yoga-type breathing which slows my heart rate and removes stress and allows me to process away the mental debris. Add the meds causing an increased heart rate for a nice recipe for PTSD simply from sleep deprivation.

Oh, and the pain. I cope with a large amount of pain normally on a daily basis; the increase – and them not wanting me to take additional pain medications I normally use – made excessive pain a constant companion, to the point that it was difficult to separate the pain into parts I could cope with – and all the rest. At one point I realized that I was putting up with a whole host of side effects making me a non-functional zombie, simply because those side effects didn’t hurt!

None of this is prescriptive: how do I know I have PTSD?

Here we go back to some of the symptoms and assessments, of which there are many on the web, with the caution that many if not most are for the more classical form.

From Screening for PTSD:

• I am troubled by having experienced a life-threatening event that caused intense fear and helplessness.
• I reexperience the events by repeated, distressing memories; and I have intense physical and emotional distress when I am exposed to things that remind me of the event.
• Reminders of the events affect me by avoiding activities and places or people who remind me of it; blanking on important parts of it; losing interest in significant activities of my life; sensing that my future has shrunk; and feeling my range of emotions is restricted.
• And I am troubled by problems sleeping; irritability and outbursts of anger; problems concentrating; feeling ‘on guard’; and have an exaggerated startle response.

What will I do about dealing with PTSD in myself?

There are a number of ways of dealing with PTSD which have been developed for the classic forms (and which can be, I read, amazingly effective for those who will seek help). They include talk therapy, some interesting procedures, and medications.

I am brought right smack up against my limitations again: I wouldn’t try a drug for this if you paid me, not after all the problems I’ve had with drugs recently; leaving the house another time a week to talk to someone – for a therapy which would probably take many weeks – isn’t a real possibility unless nothing else works; and I’m not new age enough to try things like the eye movement thing.

I will do as much as I can to handle this myself, now that I have a name for what is going on.

From HeartSisters again:

* UPDATE, August 13, 2013:  U.S. Staff Sargent and military Medal of Honor recipient Ty Carter has launched a campaign to remove the D from PTSD: “Post Traumatic Stress Disorder is really a formal diagnosis for natural stress that one experiences after a traumatic event. The formal title of PTSD sometimes gives a false impression that the ‘disorder’ is something associated with a disease or a chemical imbalance, when in reality it is simply a biological response.

Three steps are necessary to successfully treat the condition:
•    acknowledging one has symptoms
•    communicating with others about it
•    seeking treatment without fear of judgment

This post is the review of the first step – acknowledging my symptoms and what they mean.

The second step (yes, I told my husband, and I will tell the doctor this Thursday when I see her, trying very hard to not be judgmental) – I am communicating with anyone who reads this. And I’m hoping it will prevent distress in someone else when they realize how easily PTSD can happen, and how common it is. And that it isn’t just the classical war and rape form.

And I will, if I cannot handle it myself, seek professional help. Because those activities I used to enjoy, and my ability to write, are what was making life bearable for someone with a chronic illness and zero energy, and I’m not going to give them up without the fight of my life. For my life.

I don’t feel sorry for myself, and I’m trying hard not to feel too angry.

As always, comments are welcome. It isn’t really communicating unless it’s a two-way street.

Adult drugs mess with your mind

NAVEL-GAZING CAN SAVE LIFE OR SANITY

****CAUTION: NOT medical advice – I’m not that kind of doctor ****

---

Written a week ago (Feb. 26, 2017); I didn’t dare post until I knew how this ended

I thought it was just me, by now a neurotic, introverted person overwhelmed by being in a scary situation (chest pain) and a not-safe-feeling place (ambulances, doctor’s offices, hospitals, and ERs, where EVERYONE but you seems to be healthy, loud, bossy, and telling you what to do).

But as I try to recover my sanity and my health from the three stents + angioplasty, and all that implied/implies, I ALSO finally realized that I’m having a major DRUG REACTION to a blood pressure medication called metoprolol (like Toprol), a beta blocker; amlodipine (like Norvasc), a long-acting calcium channel blocker; and/or atorvastatin (like Lipitor).

I never had high BP before (except doctor-induced), and I’ve not been on any BP meds, and as soon as I hit the first ER they start pushing drugs on me. I resisted most of the drugs the first time (and they only had me for an ER day, and then a cath lab in PA day), so it wasn’t until the SECOND ER VISIT, again with chest pains, that they started pushing harder, and I just gave in and let them make me swallow and inject whatever they thought was necessary, whatever was their ‘protocol’ for everyone the same.

The adult drug: metoprolol – an iffy, volatile beta blocker (my opinion)

And that’s when the metoprolol came into my life. For days, I got it twice a day (25 mg. dose). I took it – I wasn’t in a position to argue.

When I left the hospital, they gave me my very own set of everything, which I dutifully took every day – BP med (metoprolol) and emergency BP med (amlodipine – for that BP spike), statin (don’t even get me started about those), and the two drugs I PROMISED, before they gave me the med-imbued stents, to take every day for a year: Effient (a platelet-control thingy like Plavix but better, which is supposed to keep the stents from clogging while they become part of you – epithelialized) plus a baby aspirin (81 mg.). The last two I promised to take; I won’t break that promise if I absolutely can keep it.

Saw the doctor the day after I got out of the hospital, reviewed meds with her (but not problems), reminded her that because of the CFS, and by long experience, I DON’T TOLERATE MOST DRUGS, even in small quantities, and can never take enough to get to an actual therapeutic dose of them. Decades of experience trying to take various things suggested for the CFS had proven I could rarely tolerate something.

For example, it took over three years, and every pain-killing drug in the book (except for the opioids and narcotics, which I wouldn’t take after I found out how much they messed with the little mind I have left – not even for pain). Eventually, we found one that worked most of the time, Celebrex – a cox-2 inhibitor – which is an arthritis drug, and which I’ve been taking, 200mg twice a day, for 15 years. Regular blood tests didn’t show any problems, and I prayed it wouldn’t be removed from the market (like Vioxx – which had problems).

I had explained that I would need to continue this drug for a weird pain which makes all muscle fibers, nerves, and joints burn simultaneously. I KNOW when I’m off it, I KNOW when I’ve gone to bed without a dose. I never need more, can’t manage to reduce what I take to less than 2/day.

She was listening, but I left with no drug changes, and started journaling every single day every single thing that happened to me (the experience kind of focuses your attention on yourself).

And wondered why I was still a zombie

The thing that keeps me sane is writing fiction. I gauge my days by whether I got a bit of the ‘good time’ which allows me to write the insanely complex and layered novel I’m working on.

I journaled every bit of brain activity, food, anything out of the ordinary – and ability to write fiction.

It took me four days to figure it out: late two nights ago, with the worm of certainty gnawing at my gut (along with whatever was making my gut do that wave thing continuously), I looked up the side effects of metroprolol, and some of the inevitable internet comments of those who have gone before (which one has to be very careful with, for obvious reasons).

And convinced myself (I’m not going to bias you by listing them) that the powerful drugs they had me on, the metoprolol plus the statin plus calcium channel blocker, was the cause of me being a zombie AND having the gut symptoms and all the rest.

My solution: don’t take that crap

All I wanted to do, which I could NOT do – I completely lost the ability I’ve had for YEARS to meditate, rest, nap, and calm my heat beat – was get back to the place where I was in charge of my blood pressure and heart rate again.

The first, necessary part had been accomplished: get the hell out of the hospital. I’m trying to NOT be ungrateful for them saving my life and avoiding a heart attack sometime in the future, and chest pains now. Understand that. But getting out of the hospital, and back to a quiet, self-controlled place was not doing what I had expected it to do.

With the new stents, I figured I’d be in the best possible condition for someone like me – able to slowly start my little bits of bed exercise again, lose weight, and start the walking with a heart monitor which I had been unable to build up (probably because of the restricted blood flow making my heart rate go up above the aerobic limit too quickly, even before the chest pain – but I’ll never know that for sure).

So I was optimistic – and I was making NO progress in spite of that.

You might say – and I did – that I was being premature, that I should rest more, that I shouldn’t expect to write fiction for at least a couple of weeks.

Which would have been fine, except that the symptoms I’d been trying to ignore were getting worse, not going away. Sigh.

From my journal:

I made the decision around 4AM that I’m not taking anything but the Effient and the baby aspirin, because I literally promised I would take those for a year.

My gut hurts. Waves of intestinal rolling literally make me feel sick.
My left hip hurts.
I’m queasy – and have been for weeks now.

The beta blocker and statin are NOT required.
I never agreed to a blood pressure medication, because we ALL agreed I don’t have high blood pressure.

I understand keeping my BP down (illegitimi non carborundum) – but I can’t even calm myself down with my breathing right now. If it rises, we’ll talk about that then.

I understand they are more comfortable with a certain LDL target – I am committed to losing some of this weight, but have the feeling I should not be having this much trouble.

My HEAD is soggy and useless, and I can’t live that way. I can’t write that way.

And right now the pain in my universal joint is pretty bad – and I don’t dare take the appropriate painkillers.

Even [hubby] takes ibuprofen when he needs it! But he’s not on Celebrex.

Can’t do this. Won’t do this to myself.
I tried.

The actual decision was to not take the daily dose of metoprolol+statin with breakfast.

Talk about trepidation!

And the results were weird. My head cleared for the first time in as long as I can remember.

The gut was still doing the wave – I shrugged: it wasn’t getting worse. And gut muscles and heart muscles are both smooth muscles – the drug affecting both made sense, and might take some time to wear off completely.

I finally got the timeline of events clear in my head. I know I blogged about it already, but there are significant mind warps with what I wrote (though the two segments, ER to PA and catheterizations are correct, there was actually a SIX DAY GAP between them when I was at home, dealing with chest pain I had been told was not cardiac, before I went to my own doctor to get some help with that…and the second ER to PA and catheterizations started).

Huh. I completely lost six days out of my life.

Yeah, stress. But more yeah, drugs cause memory problems – and confusion.

The day went along, the best day in ages

I almost wrote (I had to get back up to speed). I remembered why I loved this particular scene (22.1 if anyone is keeping track – first scene of second chapter in NETHERWORLD).

I got all enthused. I blocked the internet for 5 hours, and didn’t even mind not surfing – I don’t waste my good time on surfing.

I took my naps – and could do my meditation breathing and calming and even sleeping, just as ‘normal’ from before on a good day. It was still there; the drugs had blocked my abilities.

I had obviously made the right decision.

Hey, I’d only been on the stuff for a couple of weeks, it was supposedly a small dose (50 mg), and it shouldn’t be too hard to cut it out completely, and then discuss the thing later with the doctor (it’s a Saturday, and I’m sure I won’t be able to get through to her then).

I don’t want to be diverted – so I don’t even tell my husband (not such a hot idea in retrospect, but, hey, I’m fine, BP (I measure several times) is rock steady – and I’m feeling HUMAN for the first time in so long.

All I needed was to stop taking the drug which was causing the problem! Problem solved.

You see where this is going, right?

Husband has picked up a cold (I’m sure it’s all that stress of holding it together and driving to PA twice a day for me in the hospital), and is miserable, and I don’t want to bother him.

I am having absolutely no problems. He heads to bed at ten, early for us, and I stay up to surf a bit, feed the chinchilla, and put the house to bed for the night. With a still-working brain.

And the blood pressure spike HITS.

The short version (as if anything I ever write is short):

I take the emergency BP med (amlodipine).

Ten minutes later, and having argued with myself the whole time, I cut one of the metoprolol tablets in half (it’s late in the day), tell myself I should have titrated down more slowly anyway; remember someone on the internet saying that you COULD split these, even though the are extended release (tablet, not capsule – makes sense – or maybe I saw that on one of the side effects pages online); and swallow the damned thing.

And spent the next two hours taking my blood pressure every ten-fifteen minutes, journaling all this stuff, and wondering:

• should I call paramedics and go to the ER again. For a drug adjustment? They don’t do that kind of stuff, and besides, I have neither had chest pain, nor gotten to the place where I even though of trying the nitroglycerin. I wasn’t stupid enough to even consider driving MYSELF to the ER (five minutes away).
• should I wake the husband who is sick, who I didn’t tell about my little experiment, and who won’t have any particular ideas except to take me to the ER – why would he have any ideas on how to manage this little crisis?
• should I take a SECOND amlodipine emergency blood pressure tablet? No one ever mentioned what to do if the first didn’t work! I have no data. Even the internet is silent on the topic.
• was I feeling anything alarming – other than BP and pounding heart rate – and didn’t people live for years not even knowing they HAD elevated blood pressure?
• would a short period of this damage my kidneys?

I KNEW calling someone (the Aetna 24 hour nurse, or the cardiologist’s on call person if they had one) would put me in the ER overnight for ‘observation.’ I KNEW that, the same way I know my own name (and birthdate, which I’m going to change, since they used it for ID about a million times in the hospital, and I’m tired of it).

So, what did you DO, Alicia Guadalupe?

Nothing.

But watched myself like a hawk, and wrote it all down for posterity. To go with the autopsy.

When the BP spike was more or less over, around midnight, two hours later, I added it to the list of dodged bullets, was mad that I still had metoprolol in my body – had that really been necessary? – and went to bed next to sleeping husband (who had now at least had a couple of hours of sleep and of course woke up).

I told him the whole stupid story.

He said I should have woken him. I told him why I hadn’t.

He was calm, calmer than I would have been.

We chatted for a while, and he reminded me (I had forgotten – it was 18 years ago) that he had had problems with the SAME drug, metoprolol, after HIS quadruple bypass, which had landed him in the hospital within a week of coming home.

We were awake for a while. The gut is still doing the wave – I’m ignoring it. And actually managed, both of us, to get to sleep before 2 AM and make it through to around 8 AM with only minimum breaks in sleep.

What do I do now?

Play by ear again.

Don’t take anything unless I feel I have to, and then try a one-QUARTER dose of the nasty drug later today if something happens again. And the emergency stuff.

I feel fine. I feel normal. I blogged – that’s something.

Yeah, yeah, I know. Call the doctor’s office. I would, if I could figure out how to phrase the statement of what I want:

Could you please tell me how to get off metoprolol properly?

I’ve done the following… – how do I finish the process?

I’ll call during the week, but is there anything I need to do meanwhile?

I’ve done something possibly stupid, but am okay – what should I expect next?

You see my dilemma, right? They HAVE to respond to ANY question like that with either ‘GO TO THE ER’ or ‘TAKE THE FULL DOSE NOW AND WE’LL DISCUSS IT AT THE OFFICE.’

THEY have no choice. THEY have protocols they must follow or be accused of malpractice.

These are, however, the same THEY who took three catheterizations and a lot of luck, for whatever reasons, to find the thing that actually needed stenting, and have put me through hell (and saved my life – I’m grateful).

THEY put ME into the situation by giving me drugs I never agreed to long-term, in the hospital, and then NOT discussing any of them with me in the after-hospital visit.

No warnings. No ‘Call if this happens.’ No ‘You can take X for pain.’ Nothing beyond ‘If you have chest pains, go to the ER.’

But I’M at least half-way off the stuff, half-way to freedom.

It was a reasonable thing to try (I tell myself). And write it all down in case it is ‘for posterity.’

I’m thinking about it.

I took a shower. I hadn’t had one except the crappy one when I left the hospital five days ago. I figured out how to take one sitting – very low stress – and my hair is now clean, my toenails now trimmed, for the first time in WEEKS.

I’m not worried – but then I wasn’t worried yesterday when I had my first good day, either. (Fool’s comfort.)

My MIND IS CLEAR. Do you have any idea how valuable that is and how horrible it’s been without my tiny bit of brain? Day after day after day?

I have and have had NO CHEST PAIN. The gut might even be slowing down.

Husband is home, seemed surprised when I asked him if it was because of me. No, he said – he didn’t take his cold to church to share with the congregation. Love that man.

I also tell myself that anxiety probably pushed a huge load of adrenaline, the adrenaline I don’t allow myself because my body take days to clear it, into my system, so I probably made it worse than it was. Hindsight allows you to do that.

And there you have it.

If you lived through this little misadventure with me, you have now probably decided what you might do in a similar circumstance – and thus may have learned something.

Most of ‘you’ do not have CFS, and cannot imagine the difference between being a zombie 24/7 for WEEKS, and having a few clear hours, that makes my life bearable. You probably think I’m a total idiot. You would have called. Someone. Anyone.

If you HAVE CFS or a similar chronic invisible illness, this may be more your life as usual than you really care to think about. The drug overreactions, the fear, the lack of understanding among ALL medical personnel, even the ones who seem to understand and agree you’re delicate. You might have done the same, or not, but the thought processes might be similar.

Or you might think: What’s the big deal? She had a BP spike. They happen.

Feel free to weigh in. Politely. I’ll listen, even if I don’t change my mind. I can still take that dose of poison: full, half like last night, quarter. It’s noon, and I really should eat something.

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The upshot? A week later I am ready to share the adventure (Mar. 6)

I ignored the third spike, smaller, Sunday night (Feb. 26) – and BP came down on its own, no emergency drugs.

Monday morning (Feb. 27) I called the doctor’s office, told them I’m off their drugs and won’t take them. Told them I am trying very hard not to have to get off the one they really want me to take, the Effient to keep the stents open.

I asked if I could switch cardiac rehab somewhere else more convenient (they really want me to try that).

And I asked how long it would take the huge bruise and tissue damage area to resolve.

They tell me I can switch the rehab to a closer location; ask me to consider taking a different drug after these are out of my system (Zetia, a cholesterol lowering drug); and send me for an ultrasound of the damaged area.

The internet supplied the lovely information that it can take six days for a normal person to clear the drugs I’ve been taking and their lovely side effects; I’m giving it far longer, as CFS people don’t clear things as fast as ‘normal’ people.

It’s far better now (Mar. 6) SEVEN days after the last day with a half dose. The symptoms are subsiding. The head is even clear for periods of time – and I wrote yesterday for a while.

The BP runs 120-130/60-80 just fine with no help. The spikes stopped. The gut is calming down. Every symptom is dropping slowly toward what I’m used to. (There were some interesting sensory hallucinations – I won’t miss those.)

I’m ‘authorized’ to use ibuprofen ‘lightly’ – which helps with the new back pain.

And the ultrasound shows damage, but not to the artery – I haven’t been told how long it will take to heal. The bruise is spectacular, belly-button to mid-thigh on the right, and leaking down like a Dalí painting of a clock on a hot day.

Medical research and you – reading the literature

And I have spent a very ‘interesting’ week reading a ton of research papers on all this stuff.

The more I read, the more I am convinced I will probably not take these drugs – and that prudence would have advised not even starting them, or getting off of them the minute I was out of the hospital. I shouldn’t have had to find that out on my own. Even if they do what they say, my body can’t handle them, so it won’t matter if they do what they say.

I won’t summarize what I found out, but it wasn’t pretty. There is a LOT of it. It gave me a lot of ammunition IF I can keep my BP in a good range as I have been doing for years with meditation, de-stressing, and biofeedback of a sort.

The statins will most likely not be something I can tolerate – I’m guessing the liver enzymes would have shown this in six weeks anyway, but I’d rather avoid the damage.

My conclusion: I am now a ‘cardiac patient,’ which I wasn’t a month ago

That does NOT mean I lose all choices.

I am grateful the blockages have been stented, hope they got them all, still wondering what really went on, and why it took over two weeks to find them all. Hope it lasts, and I don’t need more. Hope it was a quirk of anatomy.

Am pretty sure the relative immobility of a chronically-ill person didn’t help any.

I expect to be monitored, and there will probably be more tests.

But the drug-induced hell wasn’t really necessary: I told them about me, they didn’t listen, I paid. And I learned. ASK A LOT OF QUESTIONS, and if you have time, go to the primary sources.

Chest pain from striated versus smooth muscles

DEALING WITH PERSISTENT PAIN EXPECTED TO BE TEMPORARY

*** NOT medical advice. I’m not that kind of doctor. ***

Having abandoned the hospital last Tuesday with a relatively clean cardiac bill of health, and after the cardiologist visit on Wednesday, I noticed the pain hadn’t stopped. Not discomfort; PAIN.

(By the way, the cardiologists lose all interest in you at that point.)

It was a bit smaller due to relief – but that was all.

On Thursday, sensing it would finally work, I made the effort to voluntarily NOT cough when my body wanted to. That’s a trip, by the way: you have to catch it and distract it.

But it wasn’t enough. I was still setting off the kick-in-the-chest-by-a-mule feeling when I would do such small physical tasks as walk to the bathroom, go down 7 steps to the living room, and, the worst, coming UP those 7 steps and having to walk down the hall and across my tiny office to my desk chair, where I would sit, and grit my teeth until the pain started subsiding.

If I had not already done that, I probably would have made that hospital ER trip.

Why didn’t you go to yet another (or one of the same) doctor, Alicia?

Because I decided, if I knew I probably wasn’t going to die yet, that the whole experience had completely wiped out any chance I had of getting better without some serious rest time.

Internet lookup of possible sources of chest pain

Surprisingly not, it was hard to find the information online about non-cardiac causes. Because of course you push ‘get checked out by your doctor’ and ‘go to the ER’ as solutions, if you don’t want to have your patients’ families sue you.

Have you noticed how all sites that start with ‘Non-surgical ways to…’ quickly end up with dismissing those ways and heading for, ‘If you have to have surgery…’?

In the end I found NOT ONE SITE stating that coughing could CAUSE pain elsewhere that wouldn’t necessarily go away by itself.

And none of the sites talked about HOW long-term coughing might trigger TEMPORARY chest pain – I ended up deciding that one strictly on my own. Since it happened to me, I’ve decided it IS possible to cough so much that your chest gets supersensitive, and any little thing can then set it off.

Ibuprofen, which I now allowed myself, helped a bit – but not for long – and didn’t remove the crushing/tense feeling that minor exertion set off.

Some of the sites that talked about non-cardiac chest pain had a list of other serious things that it could be (with the ‘temporary’ part not discussed).

• Some of them were pulmonary – things like pleurisy or pneumonia.
• A bunch were gastrointestinal – having to do with spasms of just about anything from one digestive end of you to the other.
• A very small number were musculoskeletal (specifically talking about the intercostal – between-ribs – muscles that help you get air in and out), and mostly seemed limited to sharp pains that might have been brought on by sudden muscular exertion.
• And no one mentioned the specific area that seemed to be aching, the outer chest wall pectoral muscles.

Using the old noggin – a dangerous thing with mine

Assuming I’m not dying from something else wasn’t hard: I convinced myself the mule-kicks were induced by coughing, and would eventually go away if not continuously triggered.

So I decided to see if I could fix the phantom mule with things on hand in a regular household like ours, and figure out what it was. I also promised the husband I’d see my doctor again if the pain persisted despite my best efforts.

I decided, from the region affected, that the three candidates were:

1. esophageal spasms
2. pectoral muscle spasms
3. intercostal muscle spasms

Tools on hand:

Last summer, I pulled my usual ‘I don’t want to go to the doctor’ routine when I’d had a bout of waxing and waning spasms of the GI tract, until, 8 days in, and 4 later than I would have taken anyone else, I went to Urgent Care and complained. I’d never had that intensity of pain before, and I was hoping it would go away before I had to have my insides subject to scoping – which would involve doctor visits, labs, tests, all things which are 1) exhausting, and 2) suck up my so-limited writing time because I have to leave the house.

When I finally went to UC, the doctor prescribed an anti-spasmodic called dicyclomine, and within a day or two my innards had stopped punishing me for eating, and drinking water. Much better. I stored the remainder, thinking it was a nifty thing to have with you on a vacation just in case.

Also, from a previous doctor I had Skelaxin, a muscle relaxant – said doctor saying I could take up to three a day. I had found that I could barely tolerate 1/3 of a pill, very occasionally, and it would knock me out. I’m a bit sensitive to medicines, which is why I try not to take them! But I have a couple of bottles of the stuff left, which will probably last until I’m in a nursing home, non compos mentis.

Plus over the counter cough suppressant, and the nice cough syrup with codeine which is the only thing that really suppresses a cough – and wipes me out.

What to use – and why?

I figured out the important thing depended on a fact I learned in Anatomy in 1968: that we have two kinds of muscle fibers:

• striated muscles – heart, skeletal muscles, with the heart muscles being INVOLUNTARY
• smooth muscles – lining your gastrointestinal tract (also blood vessels?)

The difference is that the striated ones can be affected by a muscle relaxant, and the smooth ones need the anti-spasmodic anticholinergic meds.

Using the muscle relaxant had helped a bit with Mr. Mule, but once I found the dicyclomine, and took some, I’m finding that the same medicine which the UC doc prescribed for acute abdominal cramps seems to be helping with spasms in the chest region. Same system: GI.

Conclusions

Which brings me to the conclusion that the pain probably comes from an esophageal spasm – a scary thing to consider if it were persisting or getting worse – but taking a few doses of the anti-spasmodic dicyclomine seems to be bringing the severity and duration of the pain attacks down to bearable.

Where we will keep them until they stop happening.

7 steps now trigger a much smaller animal kick; a jackrabbit, maybe.

I’m still having to control coughing attempts voluntarily, but I can do that, and the severity of that is also going down, so a week after this stuff sent me on an ambulance adventure, I am in a state of less pain, I plan to continue to avoid the doctors, and maybe I can get enough rest to get back to not leaving the house so I can write.

I’m so glad I took anatomy.

I’m not a medical doctor, so don’t do what I do.

But if you do, tell me what you figured out about your body.

Chest pain is not always heart-related

BUT CARDIAC CAUSES MUST BE RULED OUT FIRST –  THEY CAN BE FATAL

Your brain, the precious thing that makes you, YOU, cannot function without oxygen for more than a tiny number of minutes. After which, if it doesn’t get that oxygen, you are no longer YOU, even if you survive.

Get that through your head.

Before you read what follows. And remember it.

The Perfect Storm

I’ve hesitated to write this post all week because ‘The Perfect Storm’ is never apparent except in hindsight. And I’ve been feeling like crap.

As a result of the CFS I live with, you can consider me immuno-compromised all the time. Sometimes it helps to have my immune system cranked up all the time – I fight off many things with a shorter period of malaise than many people. But when it gets overwhelmed, it REALLY gets overwhelmed.

I had been coughing, as a result of first one virus, and then, probably another (probably caught from husband who thought he had caught it from me – and didn’t take precautions – and probably gave already-weakened me the horrible virus he picked up somewhere else), since around Nov. 1, 2016. Sometimes very violent coughing. Painful coughing. But not chest pain. Remember that. Not chest pain.

And yes, I had seen at least four doctors (including mine twice), had a chest X-ray, antibiotics, steroids, and an inhaler of albuterol. My lungs had been listened to carefully, and pronounced good, then diagnosed as bronchitis, then diagnosed as ‘tight’ (whatever that means).

I had the feeling that if I could just STOP COUGHING for a while, everything could get better. I really hope so – I’ve now managed to not cough for two days.

More scary symptoms added – caused by cough? Or revealed by cough?

Older white female, heavy, sick a long time, not very mobile, is not a good place to start anything from.

This is where things get a bit fuzzy. I don’t know when the extra shortness of breath started – because I didn’t record it. I just took my time climbing up the 33 steps from the crypt of the Princeton U. Chapel where I sing on Sundays with a tiny Catholic choir. Was it just the CFS lack of energy? Or was it something new? And was it a result of the coughing, or something made worse by the coughing? I honestly don’t know.

But shortness of breath is a symptom that shouldn’t be ignored if it gets worse. Nor should the tightness in the chest that went with it. If you wonder how I managed singing with the cough going on, it wasn’t continuous, I took over-the-counter meds to control it (paying for their help with the extra fuzziness that hits my brain as my body clears out the meds), and I really like to sing, and there was, accidentally, a long hiatus between the last time we sang in December (the 17th) and the first time I made it in February (the 5th). Vacation, the choir director canceling because he thought there wouldn’t be many people there, and a couple times I was too sick to go and didn’t want to cough on my choirmates. So, a big gap – during which I coughed a lot.

So I sang last Sunday. And noticed things were not good in the pain department, so I took the steps extra slowly.

And then, that night, the first trigger?

Triggers for chest pain

Are not always obvious. In retrospect only, the chest pain flare – significant and scary – Sunday evening was set off by me having a chocolate protein shake. Silly, right? I had had eggs for breakfast, so I decided to have my usual shake at night. I make it with lots of ice, and it’s very close to a milkshake (okay, for someone who doesn’t eat carbs if possible), cold and frosty and tasty.

And sometime shortly after I finished it, a wave of chest pain that stopped me short, raised my blood pressure, and scared the heck out of me – but slowly resolved, leaving me shaking and wondering whether I should be doing something. But you know what Sunday night after the Superbowl must be like at the ER, and if you’re not absolutely sure you should be going to the ER – after all, the pain resolved, right? – you pretend it wasn’t so bad and go to bed. Just to be sure, I took my blood pressure, which was high but came down slowly to almost normal.

That’s the place at which many fatalities happen, and yes, I’m perfectly aware of that.

The next morning I called the cardiologist’s office, and moved my appointment from Feb. 23rd to last Wednesday because they had an opening. The cardiologist was my primary’s idea BECAUSE SHE THOUGHT SHE HEARD A MURMUR – almost a year ago – and I had finally gone to see her, had had the recommended echocardiogram and ultrasound of the carotids, and had that appointment on the 23rd to get the results (which turned out not to be significant, or they would have made me come in). I was being reasonable.

The cardiologist’s nurse whom I was talking to – and had told about the spasms which resolved – concluded with, “If you have any significant symptoms, head to the ER.”

I hung up after those words.

On the cusp here.

Except that, while I was talking to her, I was having my morning protein shake – same as usual, full of ice, I was still coughing, and I drank it at normal speed, not really paying attention.

And in all this remember that I’m operating at much reduced brain speed – because of that infernal and exhausting coughing that just won’t go away completely. I haven’t, at this point, written fiction in weeks – because that requires that all the indicators align perfectly, and I haven’t had that in weeks. We CFS types call it brain fog.

And then it happened: decision time

An unbelievable wave of pain hits me in the chest.

Husband frantically puts on clothes, intending to drive me to the local hospital (in retrospect, I should have let him – they did nothing IN the ambulance), but I lie down on the living room floor when faced with the prospect of walking all the way out to the car, and make him call 911.

I’m coherent enough to walk him through FINDING a non-enteric-coated full size aspirin tablet (he had brough me four of the baby coated ones, and I though they might take too long to dissolve), as the dispatcher said to take. The people who make it first are the firemen – I guess they had nothing to do. They can’t do anything, and they don’t transport, but there they were. To be with us (I suppose they have CPR training) until the EMTs get there. To help me down the seven steps to the front hall (at which point they let me walk myself to the downstairs bathroom just fine – should have taken that as a sign).

The EMTs get there, transport to hospital – without doing a thing IN the ambulance except, as we practically pulled up to the hospital, rolling out the oxygen tubing you see on TV going into the nostrils – which was then on my head for less than 3 minutes. Revenue enhancement? The things you think about!

The chest hurts a lot, but it is, like Sunday night, slowly resolving. The BP has been high, but is coming down. I am trying hard to calm my breathing and heart beat.

At this point you are as committed as if you jumped out of a plane

NOBODY in this whole system can send you home now (and you’re still terrified anyway – chest pain really hurts).

Every bit of exertion IN the hospital sets off the waves to some extent. I duly report this.

I won’t bore you with the rest of the day, the admission to the hospital, the doctor from the cardiologist’s other office who tells me my symptoms are indicative of 90-95% blockage somewhere. And scares the hell out of me. And orders drugs which I later, when they are offered in the hospital that night, I decide can’t possibly help in one day, and I refuse to take drugs without discussing them thoroughly with MY cardiologist and bringing up the whole CFS thing (this was the statin; I think I took the aspirin).

By the way, if it had been cardiac, taking the statin right away is important (said MY cardiologist, but I still don’t see how – she said it prevents even more damage to the heart – must look that up).

And the train wreck continues (as well as the pain, enhanced by fear)

You can probably see where this is headed, but, after a totally miserable night on a hospital bed after being in an even worse, if possible, ER bed all day, with all other indignities not being related here, they haul me off by ambulance the next morning to the cath lab at St. Mary’s in another state (PA), and finally, after a circus of paperwork and other activity, actually go in and LOOK at the state of my arteries, etc., with the view to saving my life by stenting those presumed 95% blockages.

Only to find nothing major (though there are the beginnings of plaque they don’t like), and SEND ME HOME. No stents. No hospital stay. NO prescriptions.

With no one caring about the, you know, actual CHEST PAIN.

Which is the same theme when we see the cardiologist the next day, who now wants to treat me as if I’d come in for cardiac reasons (instead of the benign Level 1 heart murmur which tests show is accompanied by minor calcification) – and start me on meds: no, nothing important wrong, but you really should start taking these heavy-duty drugs which are known to cause significant muscle pain, especially in the CFS population, and memory problems in many (c’mon now – I have TWO brain cells left, and can’t afford to lose them).

No, the drugs don’t lower cholesterol.

No, the drugs don’t REVERSE plaque buildup. Nothing, apparently, nothing chemical can do that.

No discussion of alternate methods of lowering cholesterol (like diet, my only real option as exercise isn’t possible – can’t go aerobic because the body can’t produce energy aerobically).

The end? The summary? The conclusions?

1. If your chest hurts enough, or worries you enough, you HAVE TO GO TO THE ER. Period. You don’t belong at your doctor’s office, or even at urgent care – they don’t have the facilities should it be, you know, a heart attack. Only a hospital does. I did everything right. At the ER they take blood three times, 8 hours apart or so, and they look for certain cardiac enzymes to be present, to indicate you may have had a heart attack. But this takes a while. Meanwhile, they treat you as if. They have to.
2. It may NOT be cardiac. Some 23% of chest pain is NOT cardiac OR pulmonary. It might be esophageal spasms, or intercostal muscle spasms (the intercostal muscles between your ribs pull air in and push it out, and they were already in revolt from the coughing. Probably). The pulmonary pain can be separated out a bit, but may not keep you from a full cario workup. I don’t know about that one. The pain/spasms could be chronic or acute, or getting there – you won’t know until analyzing all the evidence later.
3. I ended up getting a heart catheterization, the gold standard for actually LOOKING, which might have taken a lot longer otherwise – but might also have never been done, especially if the pain resolved soon enough AFTER THE COUGHING stopped. So I have the baseline I, as a PWC (person with CFS) would not be able to get with a treadmill stress test (testing to exhaustion has horrible effects on PWCs; I won’t do it) or chemical stress test (same effects on PWCs; won’t do that either). But it didn’t have to be the whole ambulance/ER/cath lab emergency experience. IF the chest pain hadn’t stopped, I would probably have had the test eventually.
4. If the doctor you see in the ER gives you meds he says you should take, take them. I did with the ER doc’s meds (I think). It was later, in the hospital bed alone all night (they slap a heart monitor on you and then only come if you call) when I decided not to take the meds the over-zealous cardiologist ordered. 50/50 on that one.
5. It is possible (maybe) to stop your own coughing – IF it’s on the way out anyway, and you take it very easy, and use the OTC meds (and the cough syrup with codeine I was prescribed at one point in those 3+ months), but it’s a full-time job, and I may only have been fooling myself. By my husband’s symptoms – he who gave me the second virus – I had expected to be done with the coughing by this Wednesday. It happened/I forced it to stop on Thursday by fighting back with every cough attempt. Maybe my yoga breathing helped a bit. I couldn’t do it before, so maybe that’s also completely bogus.
6. Don’t get sick. And even if you think someone else’s illness is the same as you have, it is STILL possible to hand it back and forth – so keep up with the precautions, don’t get near other sick people, wash your hands a lot… Everything spouse didn’t do.
7. Try not to have overlapping illnesses. It messes up the diagnoses.
8. Don’t be stupid – this was a royal pain, a huge expense, and a possibly wasted effort – and it was still the right thing to do.
9. You may feel like an idiot when it turns out your heart is fine. I did. But you shouldn’t. They really can’t tell, and you really need to know, and you can’t take that chance. And you are the only one who can decide: What’s happening isn’t right, for me. Unless, of course, you’re passed out on the floor and trusting someone else will make the right call.
10. I am SO glad it is over (or getting there).

Share your own happy experiences in the comments. I’ll listen. Might learn something.

Vacation and chronic illness: the goal is survival

A view from the boat at the Grand Palladium, Riviera Maya

WHAT IS THE GOAL OF VACATIONS?

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The chronically ill person desperately wants to be normal – because normal is so much more fun.

I can’t speak for those who have always been ill, because they don’t have the memory of being ‘normal.’ But I can remember, almost three decades ago now, what it was like to go on vacation for the express purpose of having fun, taking a break from daily life, getting a tan or a snow burn, doing more exciting things and far fewer of the regular ones…

This is my first morning back from our first vacation in over two years, so, as I haven’t been blogging for a couple of weeks now, I thought I’d take the opportunity to capture the thoughts that a week at the Riviera Maya inspire – because if there’s one thing different for someone barely holding it together in ‘regular life,’ it’s going on a real vacation.

In no particular order:

Getting there: Airplane, taxi, private car, boat, bus…

I have an irritating combination of Chronic Fatigue Syndrome and a major mobility impairment (I do not walk well for any length of time – working on it). I think I would be dealing better with the CFS if I could do as I used to, and get out for short walks on a regular basis, staying well within the energy requirements. And I know I would have deal infinitely better with the mobility if I had more energy.

But what is, is.

To start the trip, we had to get from home in New Jersey to JFK Airport (from where there are far more non-stop flights), which means I started the trip by trying to nap in the car as husband did all the two-hour drive. I remember being an equal partner in the driving – and, as we both age, it would be nice to be able to help. Instead, as you can probably imagine, just getting to the airport has used up most of the energy for the day already.

The wheelchair IS available (always a concern when pre-arranging things), and I’ve gotten over that hump: me not being my slow self is a benefit to my family – whatever the loss of face from being pushed around (and I still feel it after all these years!), the gains in speed are worth it. There can also be some benefits – we often go through a shortened line for security, and have (and need every second of) advance boarding on the plane. My walker, Sylvia, is there for me to lean on – but needs rolling with us, and is one more large thing to deal with at every stage. On the plus side, more than once her seat has been used to transport baggage.

Then just somehow find a way of sitting mostly in one position from boarding to landing, and managing to get at least an hour of actual sleep to restore some of that energy, and we’re at the Cancún international airport for the next part: gathering of the party. Which, since their plane has been mysteriously delayed, requires sitting at an outdoor restaurant with all our stuff for two more hours, until son and girlfriend arrive from Houston, instead of hooking up within ten minutes as originally planned.

Find and negotiate for transportation to the hotel. REMINDER: if you can pay for things with your credit card, your bank usually has a far better exchange rate than almost anything you can generate on the spot, so use it if you can. But the rest of the world is not the US, and you must be prepared to accept lower hotel or taxi exchange rate if all you have is cash. Mexico has ATMs which will give you local currency – if you can find one. The usual perils of travel apply.

Finally, another hour+, and we’re at the Grand Palladium. Checking in takes no more than the usual (three tries to get acceptable room for the Houston contingent), and we end up, finally, at the dinner buffet.

Getting around at the resort

The biggest problem for me is that we love this resort – hugest pools, wonderful beach, great dining – but there is NO way for me to get to most of the places I want to be without an enormous amount of walking (with my trusty walker, Sylvia). We knew that even before we went the first time: TripAdvisor mentions it, the map shows it, and it is a plus for most people (given the array of eating opportunities). They will send you a trolley if you request one, but it can only get you to approximately where you need to be – so most times I opted for just walking the shortest route.

I am trying to learn to walk again, and I’ve walked this past week probably more than in the previous six months, and it was all agonizing, and that’s about the best I can say about it. If my current experiments fail, or I get even slightly worse, the next step will be a wheelchair, and most often husband pushing, and I REALLY don’t want to get to that stage. I am not a small person, and he already has his own limitations and aging. It may force us to consider an easier – and smaller – vacation destination. For now, I just loaded up on the extra ibuprofen (don’t tell my pain specialist – he’d have a fit), and gritted my teeth.

We finally got into a rhythm where the rest of the family would go on ahead, and let me get there at my own pace (which now includes frequent stops to put Sylvia’s seat down and rest). They didn’t like it – love you, family! – but it did help because they could stand in line if necessary. And the critical part for me was that if I was walking with family, I pushed myself much too hard not to always be the laggard, which increased both pain and a horrible new feeling of breathlessness. By the end of the trip we’d worked out a reasonable combination. Adjusting expectations is crucial.

Conclusion: I could have used the hotel’s help a bit more often, but did about right IF they let me do it my slow way. For next time – think very hard ahead of time, and use the trolley more often, even if I have to wait for it, because energy expended in walking can’t be regained, while energy expended in waiting is far less. And the hotel was uniformly helpful – when asked. Must give up some of the do-it-myself pride – which is still, after all these years, hard for me.

Days of sun and pool and never leaving the resort worked for me

I encouraged husband and offspring and potential new family member to do what THEY wanted to do (the kids did a wonderful day at Xcaret snorkeling through THREE underground rivers), and husband took them sailing.

While we older folk established a chair on the beach or near the pool (never worried a minute about STUFF at this kind of a resort), everyone spent the days as they wanted to – the kids did a lot of snorkeling in the salt-water pool – and I spent most of my time in the water.

And not just lazing: I am counting on neuroplasticity and slowly building up whatever muscles I have (because there is still some nerve conduction going on – maybe 30%) to improve my walking. I had counted on the pool being the exact depth for exercises I can’t do at home. So a good half of the time in the pool was spent – in Paradise – doing exercises and retraining muscles and brain.

Don’t sweat what you can’t change

I just ignored the parts I couldn’t do (didn’t go sailing this time, and have still, after five trips there over the past decade, not made it into the salt-water pool), and enjoyed every minute of the rest.

One of the days had a rougher-than-usual sea, and I got a nasty scare getting into the ocean (bit of a tumble) AND out of it (pushed very hard to get out before the next wave, and ended up not being able to breathe for a bit), and I almost let that keep me out of the ocean. But it was back to its normal calm later, and I did get a wonderful session in the beautiful blue-green water.

Marred by my only sunscreen fail. Kiddies: wear your sunscreen. Reapply every couple of hours, regardless of whether you’ve been in water. Don’t forget covering EVERY SINGLE AREA (I missed my lower arms ONE TIME and have spent the next few days slathering with green aloe gel). And let the stuff sink in as recommended. Wear a shirt part of the time even if you look like a dork. Tropical sun goes through less absorbing atmosphere, and will GET YOU. I never missed before, never had a problem – and it got me this time.

The cost to a chronically-ill person

Even in lowest possible energy-expenditure mode, vacations are a stretch. I never actually managed to unpack, used the same clothes more times than I had planned, didn’t find the after-sun gel until days into the trip, didn’t find my critical meds on the way home until it was almost too late…

The small things accumulated steadily.

I ate too much of the wrong things – half of the time from simple exhaustion (okay, the rest of the time from simple greed). Once I go down that path – eating more carbs than I can handle – it takes at least four days of eating very carefully to reverse the process. And there was no way to muster that energy in a situation where the level of exhaustion was very close to the edge, all the time.

The weeks of planning and packing took their toll (but now I have bathing suits!). I lost untold writing time because the arrangements had to be made with my good time (and even then I almost forgot to get us seat assignments for the trip there).

I lost track of where I am in writing NETHERWORLD, and will be doing a complete reset.

My guess: it will cost me another week just coping with the aftermath, and that if I’m lucky.

Would you do it again?

As often as possible.

Because I still can, and a day will come when I can’t.

Because the time with two of my three kids was priceless – and next time I hope we’re all together for the ‘annual family vacation.’

Because I have the feeling that a week of NOT stressing over what I couldn’t control, and being in basic survival mode (in a beautiful place, with food cooked by someone else), plus three of us in the room going to bed at a reasonable hour because we were exhausted (all of us), whether from fun or making it through, is a good thing (I’ve been going to bed WAY too late).

Because the soul needs beauty, and seeing coatis and mapaches and agoutis and iguanas and pelicans and flamingos in their natural habitat was wonderful (wish the idiot tourists would read the sign that says Don’t Feed the Animals Because it Kills Them).

I hope this brings me back to writing renewed.

And because it was, for all the effort and increased pain, fun.

We ill folk can get into small loops where pain and exhaustion are minimized – but so is everything else. Including fun.

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The same person who writes the blog posts writes the fiction.

Share your challenges with ‘vacations.’

Fear of writing dark places

Getting too near the end of a story

You think you have it all down – the writing is going well, there are only a few more chapters to write/polish/revise – and you come to a standstill.

This time it’s not because the ending isn’t right, or because I can’t do this, but because I now have readers – and I’m afraid they won’t like the ending of this part of the story!

Or is it because I know the ending, and I know how much work there is to getting into Book 2, and I’m afraid of it?

The right end to a story – no holding back

It doesn’t matter: an ending HAS to be right, or it’s no ending at all. Pride’s Children was plotted out as a single volume – it has just grown in the telling because its premise is tough, and the harder the premise is to prove, the more words you will need to justify your ultimate ending. Donald Maass talks about this in Chapter 6 of The Fire in Fiction – Making the impossible real:

“The premise underlying … is going to be a hard one to swallow… [it takes] three hundred pages [of setup.]”