Category Archives: CFS – living and writing with ME/CFS/CFIDS

Coping with the experience of having life options limited; methods of managing time, energy, brain fog, and pain; how it has changed me.

Based on a prompt: Baby Egg

 

THIS ONE’S FOR MARIAN

She insisted I should finish it.

I decided to give myself a few more words than the 100-word limit of the Drabble – it takes time to shorten, and I’m in the middle of NETHERWORLD, but her prompt inspired me, and here it is:

BABY EGG

She went every day to visit the baby egg. Through its translucent shell, her first child grew peacefully, with her heart sound piped in, and a gentle periodic rocking to simulate her walking around the kitchen.

Protestors screamed outside the lab that it was unnatural.

But it had finally removed Eve’s curse: no birth. No stretching the body out of shape. No pause in the ability to work. No pain. No surrogates wanting to keep the babies they carried for others.

She’d have to be in town when the baby ripened, but, other than that, she couldn’t see why she wouldn’t bond perfectly well with her offspring – after all, adopted babies did fine, didn’t they? There was the oxytocin nasal spray, and the hormones for lactation, and the nanny to do all the changing of dirty diapers.

It should be a hoot to play with when she had some time.

Here’s Marian‘s prompt:

It’s a baby egg. The neighbors got chickens that lay teeny wee eggs and gave me some. I had tomatoes from the farmers market, so I made a marriage in heaven.

She has a cute picture of a very small egg in her hand.

For the record, this is the new ‘block editor’ for WordPress, and I hate it.

Any time you change things I was perfectly happy with, I resent the huge loss of time.

I no longer have any idea where the things I depended on have gone.

If it ain’t broke, don’t fix it.

They do realize some of us have damaged brains, right?

I have no idea how to access the media, or how to insert an image, or…

Pretty much sums up my life.

And I have no idea what this will look like, vertical-spacing-wise.

SIGH!

——————-

Tiny touch of normalcy in the middle of a pandemic

Schwinn Meridian Adult Tricycle, 26-inch wheels, rear storage basket,  Cherry - Walmart.com - Walmart.com

NORMAL FEELS GOOD, EVEN MASKED

Episode #1 – The Affair of the Tricycle Seat Repair

This isn’t my tricycle – mine is a mystery brand – but it is extremely similar. One of the things that was normal this past week was a trip to the Tinker’s Den, my first.

Here at URC, an early resident refused to move in unless he was allowed to bring his basement workshop and woodworking tools. So they accommodated him by building a room off the corner of the south underground garage, and named it the Tinker’s Den. That was 20 years ago, and the workshop is used by a variety of people doing projects.

Well, earlier in the week I finally took the trike seat off because something was wrong and it had way too much side movement, but I hadn’t been able to see what was wrong while it was attached.

When I got it upstairs, I figured out the where the seat was attached to the post, a nut had come off of a bolt, and the bolt was sitting diagonally at an odd angle, attaching nothing.

To make the story short, I called Tenney, the resident whose name is listed for the Den, and we spent an enjoyable if somewhat frustrating hour or so taking the seat apart to get at the bolt, finding a replacement one (the one on the trike must be metric, so our nut jar didn’t have a suitable replacement), and putting the whole back together – and having a nice chat as I helped.

I miss doing that in the basement of our New Jersey house, where I had a full workshop – and plenty of nuts and bolts in jars before we moved. Of course, there had been no need to use a workshop for two years here.


Episode #2: The Affair of the Head Shot

The other bit of normal life was another request of another resident: I have arranged to have an interview of me as a writer published on a blog, and the blogger kindly sent me a list of questions – and a request for a photo.

On her site, I saw that the photos of other authors were much better quality and definition than the snapshot cutouts I have normally used before (yes, I knew I’d have to do something about it some day, but when you’re indie, there are a lot of things on the list).

In any case, when we came to URC, Marion had done a very nice job with her very good camera of taking pictures for the Resident Directory, so I asked if she would take a few for me for the purpose of a head shot – and she kindly agreed.

We settled on Friday morning at 11 (I cannot guarantee being up and functional earlier, though I often am, and I didn’t want to have to call, bleary-eyed, and reschedule).

She had walked around a couple of days before at that time so as to find some good backdrops among the greenery, so we set off to take pictures, her walking (she’s 91), and me on Maggie2.

And spent about an hour using various pieces of greenery as backdrops – and then she put the twenty or so photos on a flash stick which I downloaded to my computer last night.

We were masked, and stayed the required 6 feet apart for most of the time, but talked as we went, and I am so grateful because we have no idea when real normal will return, and I was dreading the whole process (I don’t usually like my pictures), but quite a few of the ones she took are very good. She is amazing.

She was surprised that I want to do the photo editing myself, something I’m reasonably competent at – but I’m really not good at selfies, and an outside photo place is not in the cards right now.


Episode #3: The book blogger reads

And finally, I found out via Mention, where I set up a request that sends me an email when Pride’s Children PURGATORY is mentioned anywhere on the web, that a book blogger whose site Written Among the Stars I visit regularly (she does very good reviews) has started to read it, and her thoughts thus far are:

“This was another one that the writing style took me a little while to jump into to and I was a bit concerned that maybe the story just wasn’t for me. It didn’t take long though for me to catch up and really start to enjoy myself. I adore Andrew. He is quirky, funny, smarmy and just so much fun.”

You know how hard it can be to persuade someone to read something different – and all authors try to find sources for more reviews – so I am very happy that she persisted, and am looking forward to hear what she thinks of the whole.


Little things matter when you’ve been in quarantine a long time.

Please use the comments to tell your stories of what makes you feel normal right now!


 

How to torture your favorite writer

Graph from Kindle showing how many page reads Pride's Children has over a month

THIS IS OLD – BUT THE PRINCIPLE STANDS

I haven’t advertised in ages, because I haven’t figured out exactly how to do it when you write in a 1) smaller niche (mainstream love story), that is 2) usually NOT indie (and you write indie), and are 3) slow (so there won’t be another book for readers for a while longer).

As an expected result, sales are slow (but someone bought a paperback this month – Yay!).

And, under certain conditions, you can SEE a reader take your book out of KU and read a few pages (first yellow bar – around 10, maybe 11 if the next bar was right after midnight).

And then read a few pages every once in a while.

From a later graph and adding all the page reads (PC is just under 400 pages), I think the reader finished by May 19th.

Slow writers take our encouragement where we can get it

But it is amusing to watch a graph like this one (and the speeding up at the end) go by when you are doing your daily check.

And to decide what you’re going to assume about the reader (since you have no data but the few points on the graph, which you assume come from the same borrow) based on NO OTHER INFORMATION.

In this case, I assumed a busy life, and a few pages read at bedtime by someone who KNEW they had to get up in the morning to work. Fair enough?

READERS owe writers NOTHING

I will say that as many times as necessary.

Once the book is on the open market, buying – or borrowing from KU – is more than enough for a reader to give the writer.

At that point, we hope they will enjoy it.

Anything else, a rating, a review, a recommendation – is above and beyond, and a gift.

If a reader buys the paper book, we usually don’t even find out if they read it unless a review shows up (these can really make your day; the absence is just normal reader behavior, because few review).

Between the reader and the writer

This has been the contract (a one-way contract) almost forever: I will read.

Going to the next level of writing a fan letter was very rare, even in the olden days.

Doing anything else other than having a warm feeling for the experience (if that happens) nowadays is as rare.

When you see a book with many reviews, it is usually because the book sold many copies – and the usual percentage (tiny) of readers left their impression.

Occasionally, a very good (or very bad) book may solicit a higher percentage – meaning it hit readers in the gut.

Torture away

Writers don’t expect much feedback

Our readers are mostly not writers – they are the people we hope to serve entertainment to.

But it is possible (probably unconsciously) to torture your writer – by proving you can put the book down, over and over.

If you need to do that, please go ahead. It does require you borrow the book from Kindle Unlimited first – and then read it a tiny bit at a time.

Know that the torture is even better because Amazon pays authors not when the book is borrowed, but as the pages are read.

You’re welcome.


PS: I’m going through my files of draft posts I never finished to see if any still tickle my fancy. This one did.


 

Boosting acflory’s post The Swedish Experiment

Dr. Jon Tallinger whistleblower Youtube video https://www.youtube.com/watch?v=PuhJaelB8GI

[Video link]

DR. JON TOLLINGER BLOWS THE WHISTLE ON SWEDEN’S PLAN FOR COVID-19 ELDERLY PATIENTS

I don’t do this often, but this one seems very important to me.

I have been skeptical of the ‘Swedish Experiment,’ the official Swedish response to the covid-19 pandemic, because anyone who know about epidemiology and vaccines knows that ‘herd immunity’ requires a huge majority of the population to be immune (est. 80-90%).

Then herd immunity makes it unlikely (not impossible) for people to catch the virus from each other, because there are fewer people carrying the virus around.

From the beginning, they said they were relying on people distancing, wearing masks, and behaving like civilized adults, and that this would allow them to not have to shut down the economy.

My friend acflory, on her blog post on Meeka’s Mind, quotes from Dr. Tollinger’s Youtube video above:


The Swedish Experiment

I almost missed this interview in which Dr John Campbell talks to Swedish whistleblower, Dr Jon Tallinger. I was shocked. Then I went to Dr Tallinger’s Youtube channel and watched him tell the world the truth about the so-called Swedish experiment. In brief, it boils down to this:

  • Sweden didn’t expect Covid-19 to hit and hit hard,
  • the Swedish government did not have a plan for dealing with Covid-19,
  • once the virus hit, the plan became to ‘let it rip’ with minimal interference,
  • All the way from the top to local councils, the directive was to not treat Covid patients over 80, or the over-60’s if they had co-morbidities,
  • People from this vulnerable population were not to be sent to hospital if they presented with Covid-19 or Covid-19 like symptoms,
  • Instead, care homes and GPs were to administer palliative care only,
  • This palliative care included morphine to make the patients comfortable, but also to make them appear as if they were not suffering when family came to visit,
  • Morphine is contraindicated for people with respiratory diseases because it depresses their breathing. In other words, it speeds up the moment of death.
  • The people in this vulnerable population were not even to receive oxygen to help them breathe. Top health officials lied about this directive saying that administering oxygen outside of a hospital setting was too ‘dangerous’.
  • This is a lie with just enough truth in it to make it plausible to the public. A small number of people with certain kinds of respiratory problems shouldn’t be given oxygen, but almost all Covid-19 sufferers should. Remember Boris Johnson of the UK? When he was hospitalised with Covid-19, the press made a big point about how he needed oxygen but wasn’t sick enough to need a ventilator.
  • There has been a cover up at all levels of government, and the reason could be that health care for these unproductive members of the Swedish population is just too…expensive.

These damning accusations don’t begin until minute 8:30 because Dr Tallinger clearly fears he won’t be believed and because…this is his own country doing what amounts to involuntary euthanasia.

See the rest at Meeka’s Mind.


Palliative care that speeds death with morphine instead of supporting life with oxygen

is not palliative care, especially when, as above, it makes the patients docile and hides their desperate air hunger from the only people who protect them, their relatives who visit.

It is well known that the most important thing to a person in a care facility is relatives who visit to make sure the person is actually being cared for.

So this is a deliberate attempt to hide the true state of the person in care from the relatives who visit – and it is not going to be any better when those relatives aren’t even allowed to visit.

Oxygen would keep them alive – consuming resources; morphine will get rid of them.

Don’t listen to me – listen to Dr. Tolliver

who is appalled at what is going on.

Listen to The New York Times: Sweden has become the world’s cautionary tale. (This article came out today, after I had started writing this post about acflory’s post.):

Its decision to carry on in the face of the pandemic has yielded a surge of deaths without sparing its economy from damage — a red flag as the United States and Britain move to lift lockdowns.

This is why I won’t go out

I am in that cohort (which has been moved down to the age of 60). When US hospitals are full of patients who need support, they have plans – to deny coverage to people based on age, on perceived value, on assumed quality of life.

I resent the thought that they think some young person who went out partying and voluntarily exposed himself to the virus and caught it is somehow more important than me, who am being very careful (yes, I know – because I can). Those who put themselves into groups of unmasked other people and drink to oblivion.

Our local hospital’s covid beds are full now.

Enjoy your beer.


Thanks to acflory for permission to copy her summary, which is concise and coherent, and terrifying.

Dr. Tollinger has asked people to boost his message; I’m assuming the links to his video are okay with him. He also has a Facebook page.


PLEASE BE CAREFUL: THE LIFE YOU SAVE MAY BE YOUR OWN OR THAT OF SOMEONE VERY DEAR TO YOU.


 

Lockdown is increased following covid-19 spikes

Part of Alicia's face with pool in background

THE FIRST WAVE ISN’T OVER

The requirement for reopening our facility in any small sense was that our state, California, needed to meet the parameters for reopening.

Our Yolo County authorities issue rules which must be followed by businesses, depending on the state guidelines.

A few weeks ago, on June 9th, a gradual, cautious reopening of our dining facilities was initiated, allowing those who chose to participate the ability to go to the dining room for dinner. Many changes were instituted to get people in and out of the dining room safely (most of which would have been too hard for me), but not allowing the kind of socialization we used to have of dining with others not of our ‘household.’

The reopening has been rescinded due to spiking coronavirus cases

I can’t blame this facility for taking every possible precaution – after all, one of the things that happens is that our total survival as a community depends on getting new people in to what is a ‘forever home’ as our older or frailer members leave us.

And reputation is everything in the business world – we can’t afford to have too many empty apartments or the price for the residents will have to go up.

And it is obvious that people will think long and hard before moving INTO a facility that has already had covid-19 cases.

The restrictions are necessary

because the outside world refuses to take the pandemic seriously – but we know how high our death rates would be if it got into our community and spread.

That’s not even a hypothetical: a third of covid-19 deaths, or more, have occurred in people in nursing homes.

And a CCRC (Continuing Care Retirement Community) by definition has a nursing home component (as well as an Assisted Living one) to go along with the Independent Living apartments (where most of the residents live, and where everyone who is part of the community must come into originally).

Lowest common denominator for the community is that EVERYONE is in lockdown.

Because we live in the same building. And are served by the same staff for many things.

I live in fear that our staff OR our residents may bring the virus in

Residents here often (>60%) come from Davis. They have local family and friends.

We can leave the community at any time – at our own discretion. We can see anyone we want – outside.

There is a requirement (probably from the county) that those who sleep one night or more away from URC then self-quarantine for two weeks when they come back.

But it doesn’t cover those who go out for the day for whatever reason, and come back the same day.

We depend on each other being sensible – including our staff, ALL of whom live elsewhere.

So I practice ALL the precautions

So that even if other people don’t do what they’re supposed to do all the time, every time, I have done everything I can NOT to pick up the virus from them if they have it.

The biggest one is that people don’t cover their NOSE with their mask.

They might as well not bother wearing the mask!

It slips down. It’s uncomfortable. They ‘forget’ – and it horrifies me.

I remind them.

They put it back on, and I see it slip off again a moment later!

Staff, Residents, Contractors here installing carpeting – they still don’t get it!

A facemask worn with the nose hanging out is NOT a facemask! Basically, it’s NOTHING – because someone having trouble breathing through the mouth behind the mask will automatically breathe through the NOSE – expelling ALL the air from their lungs through their NOSE out into the community.

Sigh.

I blame education which doesn’t teach every child that their NOSE and MOUTH are connected inside their HEAD.

Among other things I blame.

So I’m horrified, I tell them (they sometimes pull the mask up over their nose and I often SEE it fall down immediately), and I wear mine, stay away, wash my hands…

And try very hard not to leave the apartment.

A small positive note

The county has allowed limited pool access, and limited aqua therapy with a ‘medical’ person present.

So I got into the therapy pool twice for half and hour this week – and am still in a lot of pain from things I stretched, very gently, but which had had no warm water for over three months.

I may not be able to go twice a week (Tuesday and Thursday are too close together).

They may close it back down for whatever reason.

I got no writing done on those days, nor the days after (another reason I may have to do just one).

But the good feeling was amazing: in the water I am not disabled.

In the water I can move, stretch, even go up to tiptoe (in the deepest part of the pool) – things I cannot do very well or at all on land.

I am grateful.


So what has gone well in spite of the virus in your life?


 

Nobody does anything about the weather

A red adult tricycle on the Davis, CA, greenway, with the wildlife refuge behind her.

Trixie, my trike

YOU CAN’T SEE THE WIND, BUT IT’S THERE

It is curious to me that it can get so very hot for a week or so – and then go back to reasonable, at least in the mornings, when the world is still heading into summer.

As the world goes around the sun, it gets hotter in the summer and then colder in the winter, but the small variations from day to day often seem to come from nowhere.

The husband has a touching belief in weather predictions. He thinks that what they say will happen, will happen, and seems disturbed when it isn’t dry on a day he intended to put down fertilizer that required dry grass.

Me, I believe, maybe, what’s happening in front of my nose.

Today’s trike ride temperature was supposed to be a balmy 72°F – but it was very windy, and the shorts and short-sleeved shirt I wore could have been replaced by something heavier, especially since I tend to slow or stop a lot because I’m trying not to exhaust all my energy – and lose another writing day, an all-too-frequent occurrence.

I had a bad night Sunday night – so I didn’t get out for my ride yesterday, because by the time I got up (9:30), it was already way too hot for me.

So I was extra careful this morning, and managed to go for a ride while the housekeeping ladies were here, and got blown around more than I had expected.

I had to change my route

Davis landscaping crews have altered my last two rides. I don’t know why they have to block the entire greenway path for longer than two vehicles. Most times you really can’t change the route you’ve chosen, because you can only get on and off the path at given intersections.

However, walkers and runners, even with dogs, can just slip around the trucks and trailers. The trike and I are much wider, and not really suited to going on grass or slopes – which also take more energy to navigate.

So, as I came upon another blockage this morning, I had to figure out how to get home on city streets I don’t usually use.

And it was somewhat longer. And I am more wiped out than I planned.

But getting out is necessary.

I just hope I can recover enough to finish 28.5 – I finally figured out how to handle what could have turned into a plot hole, and then one more (28.6), and Chapter 28 can go to the beta reader, the lovely Rachel.

It is frustrating to need exercise to stay even remotely well, but to find that every single trike ride can cost me a whole writing day. There’s got to be a happy medium in there somewhere.


How has the weather altered your current planning?

Are you going to watch the livestreaming of the Summer Solstice at Stonehenge on June 20 and 21? The kids and I intend to.


 

Creating a new normal from debris

This morning, while the husband had gone to the grocery store on the URC bike to get the few things we need to supplement the dinners here, I spent a half hour singing.

With Kate Wolf, on Green Eyes.

And with Gordon Lightfoot, Sundown.

The first I had never sung; the second, I remember singing so many times back when it was new, I was in college and grad school, and had joined the Columbia Record Club, and had several of his records.

It is easy to let things slip when under a pandemic

I didn’t realize how long it had been since I sang.

Apparently, going to church on Sundays, plus starting an hour-long, twice a month folk-singing group here at URC had been enough to keep my vocal chords in working order, even tired. Each time, after an hour, I had used my voice, and it seemed okay and I was happy with the quality of the sound, happy enough not to give it another thought.

Well, it has been months since I did that kind of regular singing (forgive me, Carol, singing teacher, for not singing every day).

And when I tried to sing about a week ago, it was as if someone had stolen my vocal chords and left someone else’s unused ones in their place.

It was scary. The singing voice was almost paralyzed, and nowhere near what I had come to depend on whenever I wanted it.

So there’s one more thing I have to maintain consciously

The list is getting very long.

Every day, before I can get to sleep, I have to put all my joints through my little stretching and range of motion exercises – or I twitch so badly sleep is impossible. Literally. For hours. Lying there in bed, twitching as if hit by a cattle prod every 5-10 seconds. And now I also have to get up and eat something so my stomach will let me go to sleep.

None of this body stuff used to be my responsibility (except weight: as I’ve said many times before, I do not understand why I should have anything conscious to do with maintaining the right body weight – I don’t have to remember to breathe or make my heart beat!).

I’ve given up complaining – it doesn’t help. When I realize I’m twitching because I didn’t do my exercises, I force myself to lie there – and do them.

When I realize what has woken me up at 3am is that my blood sugar is crashing, I get up, eat a half cup of cottage cheese, and then, while my brain’s blood is diverted to digestion, quickly lie down and get back to sleep.

The demands of the body are nonnegotiable

Insistent.

Immediate.

And a pain in the neck.

But I develop another heuristic, another shortcut for dealing with the new problem, pay attention for a few days or weeks, and put it on the list of ‘things that must be done.’

And I fear when someone else must take care of me, because they’re not going to have the ability to do the necessary actions the instant I need them, and I’m going to spend a lot of my time uncomfortable and not able to do a thing about it.

What a life!

One more consequence of the lovely gift we’ve all been given is to watch it go away.

How to deal?

ME/CFS? Aging? Luck of the Irish? Who knows.

I try to let it take as little of my time and life as possible.

Not complainin’, just sayin’.

And I do whatever I need to keep writing.

While watching the appalling stuff burbling out in our society that has long been suppressed. And trying not to cry.


What is on your list? What are you in charge of that you never had to worry about before?


Thanks to Stencil for the ability to create graphics that are more interesting than the words I throw into them.


 

Testing the new block editor tentatively

Water drops. Text: How to survive Boredom. Not very well. Alicia Butcher Ehrhardt

THEY TELL ME JUNE WILL FORCE USE OF THE NEW EDITOR

So I’ve decided to test it out while I still have room to run and scream if I don’t like it.

So far it seems very much like the old editor, except with new controls – which I don’t know yet.

I don’t even remember creating the graphic above, but it’s in my media file from my days in New Jersey, so I probably did.

I’m getting a bit more energy from my low-dose naltrexone.

ldn works differently from medicines.

It blocks opioid receptors in your brain for a couple of hours, during which your brain decides something’s wrong – and creates more of them.

This leads to more endorphins, and other things happen, so you find yourself dealing with generalized inflammation as well.

Some people even think it will help deal with the coronavirus; I’m not going to test that deliberately, and don’t know how I will tell that I have or haven’t, but it’s a good thought. Anything that helps.

I’m also getting, a lot of the time, less brain fog

This is the main reason I’m interested in it: in these thirty years I’ve had ME/CFS, I haven’t found anything I can DO to reduce brain fog, and have had to wait every day to see if my brain would kick on and be usable.

Then I’d have to make sure whatever functionality showed up that day wasn’t needed for something critical in life, which is why I did very little writing when we were moving and packing and sorting and dejunking and dealing with real estate agents (theirs) and lawyers (theirs) who didn’t do what they said they’d do or when they said they’d do it, even though the contract clearly said we could dump the whole idea if they didn’t.

My top level functionality hasn’t improved

but I think the bottom level may have come up a bit.

The most notable effect, after taking a year to slowly titrate the ldn up to the therapeutic dose, is that I seem to spend more time every day toward the higher end of the functionality my brain is capable of, and get more done in that time.

And it seems to come every day, which was something I couldn’t count on before.

In fact, I was doing prep work for today’s writing around midnight last night – something that, trust me, never happens. I’m usually dead by 8 or 9 pm, even though my brain refuses to admit it and allow sleep.

Objective measurements?

Four finished scenes in the last two weeks – absolutely unheard of.

It still takes a lot of time to do what I do, but I’m spending more time per day doing it, so it is taking fewer days to get in the necessary time.

As my friend MT would say, Woo hoo!

And other than finding it slightly annoying, I’m not having any trouble making the new block editor do exactly what the old editor did, which is a few headings, some paragraphs of text, and image or two, and

Wait a minute. Where did the categories and tags go?

There they are, under a tag ‘Document’ up at the top of the page.

So far it is twice as many steps to select a heading style for a block of text. Annoying.

There is still a link ‘Switch to Classic Editor,’ which I will use until it disappears, but this was not that hard to figure out – for my simple blogging needs.

Which I’m pretty sure won’t change until five years or so from now when they decide to edit the editor again.

Oops. WAIT. Where’s my horizontal separator line?


This exercise has taken me to the ONE UNFORGIVABLE SIN of an editor, eating my text.

The previous one SAVED everything as I wrote.

Now I have to do it manually.

VERY BAD EDITOR.


Staying comfortable in the saddle again

Section of a side view of the Rose Garden at URC showing the side exit door and some of the path

Out door – but not in right now

UNEVEN SIDEWALKS AS A CHALLENGE TO CONFIDENCE

We are on lockdown, which currently means you can go out, but not in, through all the usual exit doors in our building.

Why? So they can control who comes into our facility, and make sure they’re wearing a mask, and pass a quick health check, and I think take their temperature. Good precautions, and control of entrances is a part of that.

They’ve added a check station by the campus’ front entrance from the street, so cars and people coming in can be queried as to whether they are essential personnel, essential visitors, or not. A patrol car with a private security guy sits there, and some of our staff are in the little covered space to deal with contractors, delivery people, etc.

No enforcement possibility is necessary – it’s all voluntary, but family members are being turned away, even if they’re bringing something, most of the time.s-l500

Maggie2 is identical to Maggie

Both are black. Unobtrusive.

Maggie waits for me to find a part and a repair person.

But I found that after two months of not riding, I’ve lost confidence in my riding ability and Maggie2’s balancing ability, so I need to go out with some excuse to ride around a bit every couple of days.

Part of it is sidewalks and paths and curb cuts and cutouts: they make look smooth to an able-bodied walker with no balance problems, but they are neither truly flat nor even remotely smooth.

Sidewalks and paths are made a square or rectangle at a time, with gaps between them. When a repair is done, or a utility opening is created, the finished product is roughly smooth (an oxymoron).

I’m not a light-weight kid with the great balance of youth

There is a lot of me, and the Maggies cope, but I sometimes wonder how much of a strain it is, and how near the actual limits I might be, especially when riding outside, with up and down slopes. I don’t go near steep gradients any more, and plan my travels with slopes in mind.

But if I haven’t been in the saddle for even a couple of days, I’m ever so slightly nervous when I hop on board, such as to go down to get the mail. When trundling down the corridors, I’m conscious when I start that I’m a little unstable.

It’s like when I haven’t spoken Spanish for a while, and my sisters rattle off on the phone, and I’m expected to just jump in and participate – and I feel so awkward reaching for a noun or wondering if they still say things in a particular way.

So tonight I went for a little planned ride

Checked the battery – 3 out of 4 dots. Good.

Took the elevator down to the first floor (elevators are wobbly because they’re on cables), and headed toward the side door (in picture). Right now the entire first floor is being painted, the furniture changed, and the carpet replaced – and is covered with a layer of plastic that crinkles as we ride along.

Use the paper towel so I don’t touch any surfaces directly, from the elevator buttons to the door opening buttons first into the stairwell, and then out into the side Rose Garden.

Grit teeth – tell myself it isn’t that big of a slope out. It isn’t.

Say hello to other Resident who chooses this moment to come out with a large dog and a frisbee – and ask that they both be mindful of where I am, as I don’t want to be knocked down or startled off my perch by a vigorous dog which is aching to get some running and jumping and catching in.

Go down the path – and run into a moving van which has barely left enough room for Maggie and me to go down the sidewalk.

In through the front lobby – and check that I can get out of the building near the Skilled Nursing section. They say yes. But when I get down there, I find that the door opener doesn’t work after 5pm, but I can get out if I push the door. Push, hoping no alarms will go off.

Then around the north end of the building, in and out of the patio area, and back to the front entrance – all the while up and down slopes, on and off of sidewalks, around sharp corners (keeping the two of us in the center of the walk), around patio furniture piled willy-nilly, smelling some lovely roses, and up and down several curb cuts.

On our way back now

Check in, chat a moment, tell them the door doesn’t open automatically after 5pm., but you can still get out (front desk seems knowledgeable all the time, but the details sometimes escape them).

Chat with a few of the servers, both of us masked – we miss our dining room staff like crazy. One is excited they are moving toward reopening some of the dining venues. I tell him we are not: no cure, no treatment, no increased hospital capacity, no vaccine – and exhausted medical personnel. We’ll probably stay in much longer than strictly necessary.

Pick up the mail. Chat with another Resident (I have to keep backing up). She’s hoping the path from hospital (starting in December, not covid-19 related) to Skilled Nursing and now to Assisted Living is only temporary, and that she’ll be able to go back to her Independent Living unit. I tell her I hope so, and want to know – I will be resisting the Assisted Living part in a similar situation unless I’m sure it’s reversible if I can handle it.

Zoom up the corridors, reverse the elevator ride – and husband say: “That was a short ride!”

Decontaminate

Put mail away, put everything back in its place, being very conscious of what might have touched a surface outside the apartment, stabling Maggie2, and washing hands twice, thoroughly, during the process.

And we’re home!

I regained my comfort, mostly, with riding. I’m glad I included time outside and with challenges – they were a bit scary and got better on the circuit. Other people commented on how smoothly we move – and I didn’t disavow the prowess.

But I know.

And that’s all the excitement of the quarantine/isolation at the CCRC today. Absorbing, eh? And reset the brain by seeing other humans (I haven’t been out much otherwise), and talking to them.

Until next time.

Tomorrow is trike ride day.

These things seem and are trivial, but they’re also important to do for psychological welfare, especially since we’re going to be at this a long time.


Stay well.

Writing persists, though right now it seems to be taking me 5-6 hours to get that brain to come on every day. I am well into becoming Andrew to write the next scene, after days of gathering.

That’s all I ask for.

Hope everyone out there is staying safe. Or recovering. I know some are not, and still have trouble some days believing the whole disaster.

“Another nice mess you’ve gotten me into.” Yup. Part of the week’s research included watching that used in a whole bunch of their movies. And yes, that quote is accurate. Memory is funny.


 

Too tired to post about ME/CFS yesterday

Image may contain: possible text that says 'MYALGIC ENCEPHALOMYELITIS (ME) MILD ME 25% CAN WORK WITH GREAT DIFFICULTY AND AT LEAST 50% OF THEIR FUNCTIONALITY. MODERATE ME ARE HOUSEBOUND OFTEN REQUIRE A WHEELCHAIR OUTSIDE OF HOME. DAILY TASKS LIKE BATHING AND COOKING LARE A STRUGGLE. VERY SEVERE ME ARE TUBE FED, IN SEVERE PAIN, OXYGEN AND OFTEN CAN NOT SPEAK. SOME AWAY. THEY ARE SOME THE SICKEST PEOPLE ON EARTH. SEVERE ME BEDBOUND IN DARKEND ROOM ALMOST COMPLETELY DEPENDENT FOR ALL PERSONAL CARE. MEICFS AWARENESS @CHRONICALLYRISING'

MISSED EVEN WRITING A BASIC POST:

MAY 12th WAS INTERNATIONAL

ME/CFS AWARENESS DAY

So today, a day late and many dollars short, I’m boosting a post from @ChronicallyRising on Facebook, which will give you an idea of what I live with.

For over THIRTY YEARS now, I have been in the very badly mislabeled ‘moderate’ category – with occasional good days where I’m lucky if I have lost ONLY 50% of my functionality.

Because this is my daily reality, I don’t make a big deal about it.

I have used my experience with the disease

to write the on-going Pride’s Children trilogy, where I have gifted one of the main characters, Dr. Karenna (Kary) Elizabeth Ashe, with the ‘mild’ form – and explore how being chronically ill affects your whole life and all your choices.

When you lose your entire medical career, ‘mild’ is a misnomer.

Society writes you off; it did her.

She learned to write – something I’ve done. But I’ve given her a better experience and a traditional publisher in 2005. She’s turned into a reclusive but well-loved author of several historical novels, by spending ALL her energy on her work (since there is no way she can be a physician any more).

And living alone.

She is much younger than I am – in the ‘adult woman’ vague category.

And there’s nothing wrong with her – except disease and society’s expectations. And how much she gives in to them.

The world may find out

after covid-19 slams through its entire population, that the incidence of this kind of a post-viral, post-survival of the acute phase, syndrome, is far more common in the pandemic’s aftermath.

It is speculated that a large proportion of the survivors will have life-long problems. Numbers are not available this close to the outbreak.

Maybe my stories will help those who are ignored by the healthy, the researchers, and those who fund public health initiatives – until it happens to them.

We are all still people, still worthy, still capable of pain and loyalty and love.


 

Seniors afraid in lockdown without being consulted

NO ONE HAS ASKED FOR MY OPINION

Decisions are being made left and right about the people who are living in senior communities.

From Independent Living, to Assisted Living, to Memory Support units, to Skilled Nursing facilities, managers and administrative personnel, government officials and medical personnel are taking decisions without consulting those of us who live in these places.

Those who can’t make their own decisions

There are a certain percentage of us who will not be making decisions for themselves because their minds are failing, and they don’t understand what’s going on – or what the options for doing something about it might be.

Families and facilities will be making those decisions, and many in this group have been badly served in homes and in those facilities which were supposed to keep them safe. Many have died without a clue as to what was going on, and without having their loved ones with them.

And yes, they are living and dying afraid.

But some of us are perfectly coherent – and we are being ignored

There are many of us who need some physical caretaking, and others who have joined a facility like our Continuing Care Retirement Community are perfectly functional and coherent but getting older.

Management routinely ignores our expertise and refuses to take advantage of the fabulous array of powerful minds here.

It is a lack of respect.

It is being managed by people who have far less knowledge and experience, compared to the accumulation in our particular facility, than we do, and who act as if we were children looking for something entertaining to do with our time.

I admit we will all fail with time – and some will accept that more graciously than others – but it galls.

Even though I’m one of the people whose expertise doesn’t go to the public good, I recognize the people among us who have been and still are powerhouses – and it galls.

It is a form of gaslighting

If you treat people for long enough as not having competence, they will give up – and that’s not good for us.

The result is an unnecessarily exaggerated lockdown, partly due to those among us who are not capable any more of understanding the limitations, but applied to those of us who are, and it doesn’t make for happy compliance when those with opinions keep getting shot down.

It’s not a good time to leave.

We made our decision, highly based on the people who live here, and will probably stick it out unless one of our kids has extraordinary requirements, and possibly even then, because I am so physically limited I’m practically useless.

It could be, SHOULD BE different

But it could feel SO much more like a collaboration between those of us PAYING for services and those providing them.

Which would serve to allay the fear, and find safe ways around the restrictions such as people who moved here so a spouse could be in the Memory Support unit most of the time, but have some meals with spouse and other family members in the various dining facilities, could see that spouse.

I greatly fear that we have lost what makes this place special, and are too easily giving up what makes this place good for couples where one person deteriorates first.

I fear for the mental health of those completely isolated ‘for their own good,’ who can’t understand or remember the explanations – and have no family or friend able to supervise their care. It is well known that the one thing that keeps a facility on its toes is supervision – for the little things which don’t appear on the checklists.

And for those who need the facilities here to exist even slightly well, I think we are being so restrictive that they/I am in pain far more than necessary, and some may be losing the will to fight on.


Management shouldn’t be as overwhelmed as they are – the business efficiencies, unquestioned, add up to hardship.

The lack of transparency really hurts.

And the attitude is confrontational.


 

The physical cost of writing fiction

Rose bushes in a garden with shady trees.

The Rose Garden at University Retirement Community

I’M PLANNING TO WRITE A NOVEL SOME DAY…

Say many people. Most of them don’t.

I’M NOT DISCOURAGING ANYONE! But I haven’t cloned myself even once: when people expressed interest and I offered to point them in the right direction, none followed up.

My oldest is writing fiction – I get an occasional peek. That’s all.

Why? Because it’s a lot harder to do than most people realize. Lots of words, and they need to be in some kind of a comprehensible order.

It’s on the order of thinking you might be able to build a car because you’ve driven lots of different models. Or even because you’re actually a pretty good mechanic.

Different set of skills, and the finished product DOES NOT SHOW where the tools were applied.

I’ve produced two completed novels in two different series

but it is not likely that the first one (a mystery written before the turn of the century) will ever get the attention it needs to be turned into a finished product, given that I’ve learned a few things this century. Maybe, maybe not. The more I learn, the more I realize it need a lot of work. Great characters, I thought, and a good end and premise, but we’ll let it live peacefully for now. In the trunk.

The first one in the Pride’s Children trilogy took me 15 years, many of which were spent learning such things as how to write a full-length play (great for dialogue).

I’ve aged, and have not gotten well

Thirty years of ME/CFS is a long time, and during that time I’ve had at least the usual vicissitudes of aging, and probably even more than average because the energy to exercise, for example, isn’t there – thirty years of no real exercise (because we can’t go aerobic – our cells don’t produce energy fast enough) leaves you deconditioned, even if you’re diligent at doing what you can (bike/trike rides, pool exercises).

That’s one of the reasons it takes me so long to write: the energy has to come from somewhere, I’m chronically ultra-short of energy, and other things in Life have to be done, too.

I’ve pared away and given up almost everything. The pandemic is forcing me to relinquish even more: at the same time it is giving me a bit more time, it is increasing the stress – never helpful.

Most people don’t think of writing as requiring energy

They’re more likely to think it needs time, because how hard can something be that you do sitting down?

They know it gets you tired – mentally tired – and that you need to keep your body in at least reasonable shape to support your brain’s work.

But beyond the obvious, most don’t realize that writing fiction is exhausting under the best circumstances. Physically exhausting.

I can’t, apparently, do two energy-sucking things in the same day

I can count as rarities the days when I do something physical first (like a trike ride, or even a trip to the front desk on Maggie a couple of times to get a package in the mail in the right sized container with the correct postage).

I used to get around this problem by doing my writing first, and then going for a ride in the late afternoon, or for a swim AFTER writing (since I never get anything done in the evening anyway).

But there’s no pool Yolo County is allowing us to use, and the days are now so hot (though not humid, bless California!) that I can’t afford to go out after a certain time. This is because California starts off cool, and then heats from the sun straight through the day. Without humidity most nights cool off, but on a day over 90° like today, if I don’t get out by noon it’s already too hot for me to be out.

My physical body is a real limitation

to my current writing. I just don’t get the hours of functioning usable brain that I need, and days will go by when no writing can get done.

I’m doing – and will continue to do – the best that I can.

That’s a given. Non-negotiable.

But I’m wondering exactly how low I can push ‘taking care of body’ vs. ‘using body to support brain.’

So the rest of you?

Maybe you should get started on that novel, and not depend on retirement, or ‘when you have more time,’ because I’m here to tell you the physical part of writing keeps getting harder every year.

And there’s NO guarantee something won’t come along and knock you clean off your pins (must look up that phrase), and you won’t be able to do it at all.

As for me

I keep trying to cheat, and figure out ways to NOT do things, so they won’t absorb the little energy I have.

My long-suffering husband keeps not complaining. He gets points.

The mess will have to wait some more.

I don’t know how long it will take – I hope days, rather than weeks or months – to get the next chapter through the last little bits (epigraphs and chapter title and a final round of AutoCrit). I only know that I keep inching forward, and I’m still excited about the story (this chapter was a doozy), and I hope I’m still around to finish this job (there’s a virus out there that eats older people and people with co-morbidities), because I still haven’t found anything I love as much as this little obsession of mine.

Thought I was improving a bit, but not really. Shrug. It won’t stop me, but it sure slows me down.

Oh. And I’m grateful. It could be a lot worse.


Stay well. Wash your hands. Don’t touch your face. Etc.


 

The mainstream literary pleasure of highly literate readers.

STUCK WITH THEIR HEAD IN A BOOK

That’s where the young readers are, when they can get away with it. I was.

I kept books in three locations in our house in Mexico City, and snuck around so my mother wouldn’t find me and want me to do something – but I always had a book. In English. Of what was around the house, including my parents’ collection of the Great Books (only the half I liked) plus the James Bond novels and such my father brought home from business trips..

It is like an addiction, pouring words into your head.

Many people learn the pleasure of reading later – and do perfectly fine with it. But there is a subset of humans who are bookworms from a young age, and once they discover the printed word, can’t get enough of it.

My readers tend to be in that group.

Figuring out words in context is a big part of that

If you read material that is probably too hard for you, you’re going to run into words you’ve never seen before. That’s when the vocabulary starts to build: you don’t understand the sentence a word is in until you have some tentative meaning for the word, so you guess, store it away as a ‘possible,’ and move on with the story.

Do this enough times, and that word will get its meaning altered a tiny bit each time you run into it, because each place you see it will give it context, and eventually most words will have a complex meaning that settles pretty close to what you’d find in a dictionary.

Or you could ask someone (mom, teacher…) or look it up, and nowadays touch it on your Kindle and have the meaning pop up, but all those things take more time and interrupt the flow of the story, so many of us reserved that for rare occasions, and just kept reading.

The literary mainstream novel

English is an incredibly rich language (we steal anything we don’t have, and, voilà, it’s English now), and I can find the perfect word for most applications – with the nuances I’m looking for.

My readers don’t need anything explained: they either know it already, or they will be fine figuring it out in context.

Mind you, I’m not looking for the truly ‘literary’ one-of-a-kind only an English professor would know them words.

Just the words that I’ve acquired from all those books I’ve read – without paying specific attention.

The only ‘class’ I’ve ever taken in ‘English’ was the Freshman English course I took when I transferred as a junior from UNAM in Mexico City to Seattle U., which it turned out later I didn’t need to take.

That class also got me to write the only term paper I ever wrote, something wild about the psychological significance of Wuthering Heights, and for which I immersed myself in the literary criticism journals at the SU library, which had articles such as ‘The Window Motif in …’

I had fun, I got an A+, and never before or since was exposed to language that way.

I am not a literary writer; I’d have to have an entirely different background for that, and it wasn’t my path as a physicist. At this stuff, I’m an autodidact. They’re at an entirely different level.

Pride’s Children is just where it all came to roost.

They said, “Write the novel you want to read, and can’t find.”

‘They’ were right. It has been great fun just letting a novel be what I wanted it to be, and using everything stored in my very odd and now damaged brain exactly the way I want to.

And my readers like it!

That’s such a charge.

Here are some of those words from Chapter 27 of Pride’s Children NETHERWORLD, which I just finished writing, and am now polishing up to send to Rachel, my wonderful – and omnivorously trained like me – beta reader. AutoCrit, my editing assistant software, flagged them as ‘uncommon in general fiction.’

  • interlocutress
  • verandah
  • malevolence
  • illusory
  • epigraphs
  • attribution
  • obeisance
  • dopamine
  • quintessence
  • scrupulous
  • galvanized
  • volition
  • tableau
  • pragmatist
  • modus operandi
  • bafflegab
  • choreographed
  • Janus
  • excoriated
  • impeccable
  • preternatural
  • demotion
  • demonstrably
  • asunder
  • pique
  • bawdy
  • Uttar Pradesh
  • pachyderm
  • impunity
  • wafting

Not really that tricky, are they?

But you don’t hear them much, and they like to get some attention, too.


Thanks again to Stencil, which allows me to create graphics with very little effort – and wonderful photos. When I need more than a few a month, I will definitely get their paying version. Meanwhile, I mention them here every once in a while, in case others need the same capacity.


 

Scene not working? Change something MAJOR

NOVEL SCENES HAVE A PURPOSE

They are not just ‘something that happens next.’

There are many different ways to accomplish that purpose, but there’s a tendency, as a writer, to have things happen in a particular way, and to have that way get stuck in the chute.

The more things a scene needs to accomplish, the longer it may end up needing to be.

But writers’ brains have the same habit of getting stuck behind the wrong idea as any other brain. And maybe my ME/CFS brain does this more than most writers’ brains because change is so difficult for me.

When it isn’t gelling

So the first thing to do when a scene isn’t writing itself, after a reasonable amount of time expended trying, is to separate the essentials from the window dressing, and consider finding a different way entirely to enact the required elements – and change the window dressing to something else entirely.

A scene could be huge, with many characters interacting.

Or a scene can be small and intimate, or small and intimate within a chaotic outer setting, or the kind of scene where it isn’t until the end that you realize a whole bunch of things have come together.

A paced novel will have all kinds of scenes, to avoid monotony, to keep the feeling of surprise and discovery going.

But few scenes have only ONE way to accomplish their task.

When I started writing this post, I had just made a deceptively small change – the hour of the scene went from 4pm to 8pm – taking it from mid-afternoon to sunset – and was able to unstick a line of attack completely. The number of participants also dropped – from crowd scene to two principals.

Lawrence Block says that when things get stuck and you don’t know what to do next, you should bring in a man with a gun.

That’s a pantser’s move.

I’m an extreme plotter, so that’s not really an option.

But one of my writing guides, Armando Saldaña Mora’s Dramatica for Screenwriters has a whole section on how to change the scope and size of a scene, and still accomplish that scene’s purpose. Which is the real advantage of my kind of plotting, where everything has a place.

Changing a scene completely is often a budget move for movies

If the purpose is for the Protagonist to say goodbye to the Antagonist, say, the scene can be large and showy and done in front of hundreds of extras – or it can be small and intense and private and done in the back seat of a taxi (“I coulda been a contender” speech, Marlon Brando, On The Waterfront). Where the taxi isn’t even really moving.

It is something only the novelist will know in a novel, where words themselves are relatively cheap, even if producing them costs blood: was this scene completely different at any point before publishing?

Changing the scene in NETHERWORLD

You don’t have to choose between ‘telling’ and ‘showing’ a scene; there is more than one way to ‘show.

The original scene was going to happen while ON the set of Opium, filming in India, where the main character would watch the filming for an hour or so, and then form her own conclusions about the undercurrents in the cast.

It works much better without the actual filming being observed, and the scene purpose is fulfilled in an even more intense way. Since the details of filming were background in PURGATORY, the reader gets the idea – and I don’t have to repeat it.

The result:

  • An unstuck scene
  • A better scene
  • A scene between two main characters, instead of one with many to track
  • Advancing the plot
  • Better dynamics
  • Definitely better dialogue

So if it isn’t working, and you’ve spent enough time that it should have gelled by now: consider that you can use a lot of what you already figured out – but reframe how the reader is going to learn what you need the reader to know.

Be bold; try something different.


Really different.

Have you done this?


 

The tiny start of each new day

WE HAVE IT EVERY DAY

I realize it’s become a little routine, getting going in the mornings as efficiently as possible, so I’m recording it to laugh at in the future.

Mind, this is me ALWAYS – and has little or nothing to do with the coronavirus.

It might amuse you.

There are many steps (beyond the obvious first one):

  1. Find brain – it’s in there somewhere
  2. Do anything that absolutely must be done before you even turn the computer on.
  3. Turn on the lamp in the corner from the switch by the door.
  4. Say my morning prayers – even though I rarely remember the promises I made.
  5. Turn the overhead light on from the control on desk I can reach from the bed.
  6. Move to the desk chair.
  7. Turn the big monitor on – and make sure the switch goes to blue (behind PostIt so it doesn’t affect my sleep by being too bright).
  8. Lift the lid to the Macbook. While waiting for the screens to come back,
  9. Reach for phone, and plug it into the charger (I don’t charge overnight because I need it for a clock in the middle of the night, and a flashlight)
  10. Critical: reach down and turn the power strip with the two bright green lights ON
  11. Now it’s okay to turn the desk lamp on (with a touch).
  12. Open the venetian blinds and the shade to let the light in.
  13. Pills: take morning ones, set the later ones out.
  14. Check the email.

The reason for waiting to do 11. until 10. is done is that I keep forgetting to do it – until my Macbook suddenly shuts itself off and goes blank.

And when I look, and the two green lights are NOT on, I realize I forgot – and the battery went to as close to zero as the Mac allows, and I DID IT AGAIN!

So I’ve linked them deliberately.

After that come the optionals:

  • Diet Coke #1.
  • Breakfast (but that can wait for hours if the brain is on and I want to try using it first).
  • Water and ice for the HydroFlask tumbler I sip from all day long. Cold!
  • Facebook, quick answers to anyone who seems to want one.
  • The Washington Post, and The New York Times – quick scan.
  • Load up a page of sudokus – hard – for when I block the internet.
  • Check the calendar.
  • Check the To Do list – maybe – not good with that; stuff gets done, but not in an organized manner. Occasionally, clean the list, remove stuff already done.
  • Extra Vitamin C? Extra painkillers? Extra liquid B12?
  • Checking if any books have sold on Amazon overnight, or the nice person who took it out of KU has read any more pages.
  • Check The Passive Voice and Writer Unboxed; comment if I feel like it.
  • Think whether it’s been long enough that I should consider watering the twin coffee plants and the flowery thing.
  • Open the living room blinds that let me see out from my office past the living room, somewhere into the distance.

And finally, if I have any energy left at this point,

think about what I might need to accomplish today.

Think about adding an energy-draining shower to the list for today.

Including whether I both need and can afford to take a short trike ride for mental health and a tiny bit of exercise, like today – if so, try to remember the ritual associated with that now – from taking the cellphone and the locator bracelet for emergencies, and the keys, and the backpack, and water…

There you have it – boring as all get out, so I try to do it quickly, so I can go on to procrastinating from writing by thinking about writing.

Oh, and worry about the coronavirus, COVID-19,

and whether we’re still going to be safe, here in our total lockdown at the CCRC.

But that one goes without saying.

All this is so I can get to the real reason for getting out of bed:

  • Working on the current/next scene in Pride’s Children NETHERWORLD.

Which is coming along very nicely.


Do you find yourself doing the same list of heuristics every morning in the same order and playing a game with yourself to see how fast you can get past it?