Category Archives: disability

Major stress doesn’t just END neatly

A peaceful setting on the greenway, mother with stroller and child

GETTING BACK TO NORMAL?

Outside stress

I told myself that when the Electoral College did their thing, the stress about who the next president will be would lessen.

It did.

But not enough.

There’s a pandemic going on.

I had hoped the arrival of vaccines would help, and it did – until I realized that even though we’re over 70, and living in a care facility, those of us in Independent Living will not qualify for the vaccine for quite a long time. Staff will be ALL vaccinated first – not a bad thing, as they are the ones who DAILY go back into the community.

People in Assisted Living, Memory Support, and Skilled Nursing will be vaccinated.

We will not. Not at first.

And it will be a VERY long time before I don’t have to worry about my children (late 20s, early 30s), because they will be among the last vaccinated, which means their quarantines (and ours) will not end for many months.

Medically-induced stress

I told myself that when I found a new doctor, completing the process of picking one more deliberately than how we found our first Primary Care Physician (PCP) when we moved here over two years ago, and met him or her, and things seemed more to my liking (the first physician was fine, but we are not, it turns out, on quite the same page philosophically as I had hoped), that I could relax.

It did – I had a wonderful first visit yesterday during which all we did was talk, and at the end. I had asked the nurse, ‘Could we do this at the end?’ when I got there, and she agreed with no hesitation (good sign), because I was so stressed about having done that horrible thing, CHANGING YOUR DOCTOR), so that when she took my blood pressure, it was fine (Note to self: make sure I send a note to the cardiologist).

It would have been lower, I’m convinced, if I didn’t have to fight so hard to have the American Heart Association (AHA) guidelines for accurate BP measurement followed.

I get it: they’re busy, and they have to process people through quickly. For most people it doesn’t matter much if the nurse talks to them continuously through the process, they’ve exercised (getting to the doctor’s office DOES constitute exercise) within the past half hour, or they’ve not been allowed to rest quietly – or any of the other guidelines.

But for those of us for whom going to the doctor brings up a whole host of issues, stress significantly raises the measurement taken under not ideal conditions – and that is the number that goes into your permanent medical record.

So that particular medical stress has been lowered – but is not gone. And the contortions I had to go through in my mind and in person left me completely exhausted and unable to write a word yesterday. I couldn’t even nap!

And, of course, my medical system still doesn’t have someone with expertise in ME/CFS I can talk to – I continue to be completely responsible for whatever self-care measures I can find and execute to deal with what, for convenience and so readers can understand because it’s FRESH, is exactly like what the Covid-19 long-haulers are discovering: no one knows enough to help them get themselves back after a virus, and for some it’s been almost a year.

Removing the stress isn’t a panacea

In many ways, it dumps you back into the situation you lived in before the stress started, but at a significantly lowered coping level.

There’s the long-neglected to do list.

There are the problems with money, which for some are an annoyance, but are a major new source of stress for those getting unexpected bills, do not have the expected income, or are even worried whether their investments will be ravaged by the stock market rollercoaster – and they will have to depend on their children to pay the bills because their nest egg will not get them through!

I won’t be able to relax completely about the election until Biden is IN the White House, either – too much nonsense has gone on.

There have been some new health challenges – notably the blood sugar rollercoaster (much better, thank you) – which consumed lots of time and caused much worry. The kind that RAISES blood pressure (yup, all stress reinforces other stress).

I don’t know how to get back to – or to – ‘normal.’

Nobody does.

My resilience has been challenged by 31 years of chronic illness.

And we’re still in lockdown, not particularly conductive to relaxing, abetted by the news that California’s screwed up bigtime. If you look at all the graphs, it is likely much of the soaring covid and covid death rates were NOT helped by Thanksgiving, and we’re about to repeat that with the year-end holidays.

We take it day by day.

But it’s been incredibly hard to write. To create NEW fiction. To find a time during the day when the brain is functional (not just in survival mode) so I can use it.

And ignore the guilt that comes from not using some of that ‘good brain time’ to do things that really should be done, and which I’ve been planning to do in the evenings AFTER writing – something that just keeps not happening.

Be kind to yourself

And everyone else.

Be especially kind to those who have been working because they have to – we have an amazing staff here, but they are human, are working under plague conditions, and have had to live with weekly testing, knowing some of their colleagues have tested positive, and that a mistake on their part might severely damage one of the old people in their care.

And don’t expect to get back to normal easily or quickly.

Because we don’t.

Stress stays there, like a phantom limb, even when it’s technically reduced or gone.

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The deadly accumulation of tiny things

I’VE BEEN DOING THE BEST THAT I CAN

For many reasons lately, I have been having trouble blogging, must less writing fiction.

It all came to a head about a week ago, when I realized I was having what I thought might be ‘attacks’ of very low blood sugar – and they scared me.

I’d wake up in the middle of the night, or realize after working for a while, and I hadn’t eaten in a while.

My body would be screaming at me, and I felt as if I would pass out if I didn’t eat something THAT INSTANT.

The process of getting food in me – any food in me – was fraught and frightening: I would start eating something easy like cottage cheese, and not stop until I had consumed a couple hundred calories, and then would sit there in the kitchen, shaking, until it took hold, or diverted the blood from my panicky brain to digesting what I had just eaten, or whatever – but it would leave me trembly for what seemed hours after.

So after several days of this, and on the weekend,

I promised my husband I would contact the doctor, and, as the online appointment page offered me a video visit at 9:45 Monday morning, I took it, and was waiting when the doctor tuned in.

Best visit to a doctor of my life: I hate doctor appointments after over 31 years of a chronic disease that I’ve never had help with, and this time it was in the comfort of my own office and computer, and, through some twist I never figured out, the video took up a very small fraction of my screen, and his head was smaller than a passport photo.

Long story short, as every doctor under the sun (it seems), he wants me to entirely change the way I eat.

I said no. It works for me.

But afterward, I got to thinking, and sent him an email suggesting that since we had a blood glucose meter, I could take measurements for a while at different times of day, and maybe figure out what was going on. Other alternatives would involve a hospital stay – something I’m hoping to avoid right now – and the effort required to change my entire system of eating is not something I would undertake unless all else has failed AND he guaranteed it would work. Not likely.

Let the games begin

I spent the next morning after husband picked up some new supplies (his were from 2013) getting the system to work.

I called our nurse. Took the meter down to her office.

She took it down to Skilled Nursing, where no one is allowed right now who doesn’t work or live there, not even friends and family.

She said the meter didn’t work – gave errors – BUT she brought me back in a tiny plastic meds cup a single drop of the control solution (glucose in solution at a particular concentration), and Maggie and I brought it back to the apartment.

Courtesy of good planning (and luck), I had one of the lithium batteries the device needed, and it worked, and I was able to test the monitor with the control solution drop!

Now for individual measurements

I learned the whole make a hole in yourself and gently squeeze a drop of blood out of your finger thing, which I hope not to have to do ever again after this, and started recording both the measurements, and the things which might affect my blood sugar levels: when I ate, whether I felt particularly shaky, how long it had been since I slept (I take at least three naps a day lately), what I ate (though I’m not planning on altering that, and it was mostly low carb stuff).

It’s a real racket: the test strips are $1 apiece, and you need a new one for each drop you test (unless you mess the drop up, and then the spare works sometimes). The little lancets (poky things) aren’t supposed to be reused. And the control solution (I have some coming in the mail from Walmart) was $15 for two 4oz. bottles. And here’s the kicker: you’re supposed to test your meter once a month (or when you think the results are messed up), AND discard the opened bottle after three months, and I defy anyone to use up that much liquid in three months!

I don’t see how diabetics manage their testing.

In any case, I now have a solid week of about 5-10 measurements a day, and I will sort them out in Excel, graph them, analyze the graph and notes, and send a copy off to the doctor.

But the answer is

that although my blood sugar IS lower when I’m feeling very shaky and unhappy, it is NOT low enough to be classified as clinically low. Even when I felt I had to respond this very instant, it was probably me overreacting.

Now I measure, and then I eat if necessary, but I’ve also relaxed enough to realize it is very uncomfortable, but I’m NOT going to pass out, and even at the worst, I can actually breathe through it and handle it rationally.

Which is where the accumulation of tiny things comes in:

This has not been a normal year.

I needn’t list the things that have happened, or the continual stress of being locked down or the reason for the lockdown.

The worry about whether loved ones were okay has been huge; some were not, which was even worse.

And I’m sure this was my version of covid fatigue: the stress level got so high that a slightly (okay, it was scary and not little) exaggerated feeling of doom accompanied the more frequent occurrence of something uncomfortable and frightening of episodes that have been happening all along.

And I’d been making them worse without realizing it.

Because my brain stops working when I eat, and then I have to take a nap to restore it to even remotely usable conditions, I was postponing eating as long as I could, hoping to get some writing done.

Which led to

So when I finally had to admit I had to eat, we were at full-blown hunger – and the lowest of my normal range blood sugar range – and it took time to recover. A lot of time. Even after eating.

I might have been able to shorten that time had I been willing to eat something with sugar in it, but that also messes with my brain, with consequences sometimes lasting more than 24 hours, and I didn’t want to start down that path. So I accidentally made things much worse – and then freaked out over it.

I told the husband. I told no one else until I talked to the doctor.

We all try not to worry the offspring, right?

But I have been in a high dudgeon state, and of course incapable of writing fiction. OR blogging. Or, indeed, anything except wondering if this was going to be it.

I’m not even sure they would check for low blood sugar if I ended up in an ambulance, and husband wouldn’t be allowed to go in with me. Which added to the worries, as, if it’s really low, and not corrected, you can literally die.

When I had to deal with it because it happened at 3-4am, I was not in the best state to be rational – sleep deprivation does that.

And, as usual, the solution, eating, was putting on weight – and I already have to deal with that, and no, I do NOT seek help from doctors for that: their success rate, long-term, is 2%, though somehow EVERY SINGLE TIME you see one they mention you should lose weight, as if it were something you could decide one night, and have done with by the morning.

So I also have not much to write about or post about.

Us being in the middle of an unchanging physical, global, and electoral nightmare.

And California, which had seemed to be doing okay, is now having most regions almost to the highest pandemic status, including the Greater Sacramento area, and is no more free of covid problems than the rest of the nation.

If you’ve ever done a stress inventory (you should – find one online), I know my stress levels (with an easy life in a nice place and people bringing me dinner every night) are in the DANGER ZONE. I can only imagine what it’s like for others who don’t have our resources, who have to go to work, whose children are in school, who have a relative or friend in the hospital or who work in one.

I apologize for the self-centered nature of the above half-assed post.

It’s all I got right now.

That, and watching the sales graph at Amazon: sold two ebooks this month! After nothing for several months before that. And it isn’t going to get any better until I finish book 2 and revisit the complete marketing problem – from website (prideschildren.com – don’t go; it’s very rough right now), to ads, to finding more reviews (pretty please – if you’ve ever planned to write one, now would be very nice).

I’m really trying to get to the VERY good end of this volume. Can’t wait.

I am glad to put this scare behind me, and hope to be able to create more than a few words of fiction every day, because I can’t wait to get to the end of this one.


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Let me know how you’re all coping with stress, and if you have stories of how it’s pushed you far out of your comfort zone.


Recommend PC to a friend if you were always planning to do that.

Bye for now. I have no idea when you’ll hear from me again, but I really miss you.


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Write a good book, they said

ALL STORIES ARE ABOUT LOVE

Humans are born needing love to survive – ‘failure to thrive’ may even be a cause of death when there is not enough love, in the form of feeding, holding, keeping warm, for an infant to want to live.

If that love isn’t present ‘enough’ by a certain age, it may never be recovered. Adults who have survived have significant problems. The Romanian children kept in orphanages and later adopted often were incapable of attaching to their new parents, parent who were not prepared to deal with them and their special needs.

Distinguishing between a Romance and a mainstream love story

like Pride’s Children is critical for my advertising, and it is something I still have a very hard time with.

Romance readers do not like Pride’s Children.

The negative reviews I have come from people whose expectations were not met.

And that’s my fault – because something I did caused them to EXPECT a Romance.

Romance readers have very clear ideas of what they want:

  • a relationship between TWO people
  • relatively short books
  • more of the same only different – from the same author
  • an HEA (happily ever after) or at least HFN (happy for now) endings
  • and in some cases, a form of point of view that alternates, in the same scene, between the points of view of the two characters
  • covers which indicate the kind of Romance enclosed within, from chaste to steamy
  • recommendations from Romance websites

There are many variations and compilations, but those are the basics from what I can discern.

I wish I wrote Romance – it is in some ways much easier to signal what a book is, and to market.

There is also a huge amount of competition!

A mainstream love story is a different beast

Even though Gone With the Wind is often listed as a Romance (and ‘Romance’ is what all novels used to be designated), it is not: no happy ending, not even a HFN. NOT a relationship between two people – Ashley Wilkes is in the middle for most of the book. And no head-hopping: the point of view is firmly locked on Scarlett for the whole story, but in a limited, not very intimate, omniscient way.

I’d call GWTW a mainstream love story, even a fairly literary one.

And I think that is the key to its enduring success.

At the end, we ache for Scarlett, for ‘tomorrow is another day,’ for her transformation, for her future – which made it irresistible for the Margaret Mitchell estate to allow a writer to take the story further.

Unfortunately, they picked a Romance writer, which I believe was the wrong choice, and didn’t buy.

But the marketing… with the book’s fame, they could market it any way they wanted.

I don’t have that fame.

Traditional publishers might have known how to market Pride’s Children

Many things kept me from submitting Pride’s Children to an agent, trying to find a traditional publisher:

  • I’m deathly slow
  • Disability is handled in the story – at the time I was nearing a finish, disability only got lip service while being sort of categorized with ‘diversity’
  • I’m pathologically stubborn
  • I have believed the indie self-published path is better for a long time now
  • I dislike not having everything in my control
  • I was sure I would be getting, “Nice – but not for us right now” responses, as traditional publishers went with things they were more certain they could sell
  • I knew I would be asked to change certain elements of the story to something more palatable
  • I don’t like their royalty structure
  • If I break out, I want it to be because of what I did, and not for someone else to be able to claim the credit.

But not going traditional leaves me in charge of marketing and publicity.

And most indies do not write mainstream literary fiction!

So there is little path to follow, and that among mostly indie historical novelists; though if I end up taking as long as I seem to be, ‘historical’ may fit me. Depends on whether it is 25 or 50 years since the events happened, as 2005/6 is the timeframe. I’ll probably make 25 by the time I finish the third volume, but probably not be around for 50.

I am gleaning information and ideas from many sites and groups

None of them really appropriate.

I need to figure out how to ‘go viral,’ to capture the zeitgeist, to become popular.

While still having zero energy, fighting my body daily to get some writing brain time, and trying to blaze a trail.

I have ideas. I have sources and places to put ads (some of the previous ones were expensive disastrous messes). I get cannier and sneakier and more educated and more focused with each thing I try.

But it hasn’t been, and won’t be, easy.

The last attempt led me to USTO.gov (copyrights and trademarks and such) to make sure a phrase I will trademark wasn’t being used already.

It isn’t.

But the cost is not zero, and the category I fit in right now – intent-to-use – won’t last long enough for my purposes, so I’m not revealing it until I’m ready to use it. Meanwhile, I will be on tenterhooks.

Which brings me full circle:

‘Write a good book,’ they said.

But never said that part of that may make it extremely hard to sell.

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As usual, comments are very welcome – and I love getting suggestions.

Also, my thanks to Stencil for their graphics software and ability to have a free account for up to ten images a month.

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Taming brain fog and the vagal nerve wave

Surfers

WORKING AGAINST THE INEVITABLE IS EXHAUSTING

The instructions for getting to shore safely when caught in a riptide are to let the current take you where it will, while swimming slowly across, until you’re out of its grasp.

If you try anything like fighting the current, you will drown after you become exhausted, unless one of those nice fit lifeguards sees you and gets to you in time.

Because the current is stronger than you are – by many orders of magnitude.

What is brain fog?

If you have to ask, you haven’t had it. I’m glad for you.

It is feeling, within your own skull, that you just can’t think.

That your brain is in there somewhere, maybe, but you can’t get to it. Other names are chemobrain, fibrobrain, stupor, …

No matter what you seem to try, you can’t get out of the fog – and you can’t think.

It can be caused by illness. By medication. By sleep deprivation. By eating or drinking too much or the wrong thing.

It is a huge part of life with ME/CFS (myalgic encephalomielitis/chronic fatigue syndrome).

It robs you of hours of time.

Healthy people may have ways of exercising through it. Some people can take a stimulant like caffeine to focus and wake up, or ADHD meds.

Rest SHOULD help, but for people like me is often not restorative.

And what is this thing you’re calling a vagal wave?

The vagus nerve enervates much of your body, from the spinal column up to your brain, and out to your limbs. Including innards you don’t have conscious control over, such as your digestive system.

It covers so much territory, it’s hard to know exactly where the sensations are coming from sometimes.

I get periods of time, long ones, when it feels like a wave motion is going on in my body, and all I can do is sit there and let it do its thing. Sometimes painful (the meds after stents caused a horrible case of constant waves of pain in the gut), sometimes not.

When I sit in front of the computer screen, ready to write or focus or think, but the waves are going, all I can do is to grit my teeth and live through them, hour upon hour.

But I’m a problem solver by nature and training

and I finally was able to pay enough attention to the combination of not being able to think, and feeling as if I was in an aquarium (the modern kind with waves).

Data is essential for problem solving, both to identify what’s going on, and then, when you come up with solutions, to see if you’ve managed to change something.

And I finally collected enough data (over months of not being able to write very often), to see some correlations.

I have to eat. We all do. And I can’t think starving, so I can’t postpone the eating TOO much, plus I seem to get these shaky periods of low blood sugar if I put off eating too long, and then it’s an emergency to eat something.

I don’t eat many carbs, so it baffled me – sugar messes with my brain, and the day after eating sugar there’s no way any thinking is going to happen. I don’t even bother trying any more.

But I FINALLY noticed

that 10-30 minutes after I EAT, the waves start, and the brain fog.

I used to try to push through – and the only result of that was to spend hours in that state.

I tried taking naps when I got tired – but they weren’t organized or planned, and the effects didn’t seem to correlate with anything; it was just something I HAD to do.

And I finally figured it out:

My damaged and severely limited energy metabolism doesn’t have enough at any given time to do BOTH: keep me awake and functioning (or even get there), and digesting my food.

It took some tweaking, but I have found a system which takes advantage of my need for napping and my need for food, and times them so that they don’t conflict.

So now I run a time-share

I get up, drink First Diet Coke, and try to get a bit of writing or organizing done before I eat anything.

When hunger tends to shut me down – anywhere from a few minutes to a couple of hours later – I prepare for the next phase: I eat something (mostly protein), but I start getting ready for the changeover from thinking to digesting. I take notes so I can pick up easily when I come back.

And when I feel the waves starting, I get into my jammies, pull the shades, turn the lights off and add an eyemask to block external stimuli, and get in bed.

I set a timer for 35 minutes.

If the wave approach is gentle, I’ll do a quick range-of-motion set, a couple of minutes worth.

If the approach is sudden and severe, I just crash. I used to fear this part – now I just realize I dragged my feet too much.

Lights out. Body temperature drops abruptly (ergo, the jammies). Sometimes deep sleep, sometimes a coma-like state.

The digestive part of the vagus nerve’s control takes over – and I don’t get in its way. No reading. No TV. NO COMPUTER. No trying to think, or push through it, or ignore it.

Just give in.

And when the alarm goes off

I get up, stretch a bit. Get some water, and Second Coke, and NO FOOD.

And within minutes I’m functional again (inasmuch as I’m ever functional), and I can usually work/write for an hour or two until I’ve used up my nap energy, and need food again.

I try not to do Third Coke after Second Nap – that’s too much caffeine for the day (each can is about 45mg of caffeine – peanuts compared with a cup of coffee or an energy drink, but it’s about as much as I can tolerate at a time without getting scarily shaky).

What I should do is not drink First Coke until after First Nap, but that has other physical problems related to it that I prefer not to go into here.

For years I’ve taken 3-5 of these 35 minute naps every day.

And I ALWAYS wake up in a better state than I laid down in.

But this is the first time I’ve coordinated all the pieces, and added the realization that DIGESTION TAKES PHYSICAL ENERGY.

And that my energy supplies are so low, I can’t afford to have the processes of thinking and starting digestion going at the same time.

I’ve been testing this system for the past week

I’m only taking 1-2 naps most days – probably because they are at the right time.

Eating is the trigger – every time. I hadn’t realized how strong it is as a trigger. Though it makes perfect sense: you eat, your body starts digestion. Duh!

Not having a good night’s sleep can cost me the first workable period, and, on a bad sleep night, I may not be able to recover the following day at all.

If I exercise at all – and right now we’re only allowed to use the pool in a predetermined half-hour slot during the 8-11am time – even if it’s the gentlest possible stretching in water – most or all of the rest of the day is shot, because I can’t make up that energy. So the two swim days a week are going to be non-writing days, most likely. Evening would work, but the county rules for the pandemic require a staff person supervising, and the facility is only providing that on weekdays in the morning. Before, I used the pool alone whenever I wanted to, and it was usually in the late afternoon or evening.

If I try to defeat the system and push through, all I do is foul everything up, and get neither rest nor functionality nor good digestion. Timing is critical, as is diversion of energy from one stream to the other.

I might have figured it out sooner

if I had a readout somewhere on my body of both energy usage and remaining stored energy.

I’ve been fighting this battle for years, but I never got quite the data until I noticed the crash after eating – and thought about it. And then it made sense: I’m broken, but I still have some small amount of control.

What I need was all this pandemic isolation and time, and the frustration of the crashes, and some insight that I still don’t know where I got. I have time – lots of it – but was not making much progress in writing NETHERWORLD, except what felt like randomly.

And when the brain was there, I could write for a while – and then it would go.

The PRINCIPLE is the key

I have only enough energy for one process at a time.

I’m lucky I do. I think aging takes its toll, too, and I’m probably producing less energy, total, every year.

Many people with what I have don’t have even this amount to work with – and spend their days playing catch up, with task after basic task barely getting done.

I’ve written this in the hopes of saving someone else with this kind of severe energy deficiency management the years of figuring out how to make the most of their energy creation and storage capacity.

Please let me know if this is of any use.

And pray it makes me a faster writer – I really do well with my brain on!


My thanks to Stencil for the capacity to make interesting images for these posts. Give them your business if you need to produce this kind of image – they have lots more stuff available than the free accounts use.


Forcing my body to obey me

Sunset picture from my balcony, pinks and blues
Sunset past the Fall Equinox

WRITING FICTION REQUIRES THE BEST I’VE GOT

And when I don’t have it, the fiction doesn’t done.

It’s frustrating.

It’s also my life, and, if nothing else, that life has given me Pride’s Children, and so I forgive it.

Writing posts that reveal

I have two almost complete posts:

Laying out my writing wares for the passersby

and

Tagline, logline, pitch are the hardest writing ever

both of which are my brain kicking up something I’ve been resisting: serializing Pride’s Children NETHERWORLD.

Why? Because it is half finished, and I only had 40 finished scenes when I started serializing PURGATORY, and I have well over that for this book.

These posts are pending until I make the big decisions.

The first book was serialized several places, a new finished scene every Tuesday for two years. Read that again, and realize that, for someone as physically and mentally challenged as I am, that kind of commitment – which I fulfilled – is almost the same as spitting into the wind.

I honestly don’t know if it helped me write, or helped me focus. But I do know I finished.

At the time I hadn’t published anything else, so there was no sense of bravado – no one would probably care if I didn’t finish the story, the scenes didn’t get published on schedule, or I disappeared into the unpublished ether as a debut author.

Other publishing tasks got done simultaneously

During that same time, I learned Pixelmator and worked with J.M. Ney-Grimm, who kindly mentored me in producing my cover, a process which took a whole summer.

And I learned all the editing and formatting and proofing and layout tasks needed to produce an ebook and a print version. ALL. Seems a little foolhardy looking back – a rank amateur attempting a story which will be as long as GWTW when I’ve finished the third, as yet unnamed, volume.

Many of these tasks turned out to be easier for me to teach myself, at my own slow pace, than to find someone and communicate with them to get what I needed. For someone with a damaged brain, explaining is as hard as doing, and a LOT more expensive, so I just plowed through.

It should be easier the second time around

But it’s not. It’s harder – because there are expectations. And because the second book in a trilogy has to kick everything up a level – loosening up or staying flat aren’t options.

And, never fear, the kicks have been planned into the structure – but they are also harder to write.

And I’m older, and have been damaged longer

And there’s a pandemic going on, and a heated election, and a world going up in a different kind of flames.

The body’s older. The brain’s older than when I started this particular story – in 2000. If I weren’t so slow, I would have been long finished by now. GWTW took Margaret Mitchell ten years; I’ve already been at this twenty.

Serializing is a promise

But the idea of serializing again, only now with possibly more readers because they’ve read PURGATORY, excites me.

That, and developing the website for the books. (I have found a marvelous little book called Making Your Website Work: 100 Copy & Design Tweaks for Smart Business Owners, by Gill Andrews, just packed with good ideas I can’t wait to try.)

And publishing and making available as a reader magnet the Pride’s Children prequel short story, Too Late, which was a featured story on Wattpad, all this is exciting.

And I’ll put PURGATORY on sale periodically via Kindle Countdown, so that anyone reading something they like on the prideschildren.com website serialization can get PURGATORY, read and catch up, and enjoy knowing what happened before.

Just in case something happens to me

This is something any author involved in a several-book project right now has to take into account: not making it.

Many a series out there has been ended prematurely when the author clocks out for one reason or another, and Covid-19 is very hard on people in my age and disability cohort. So I will do a ‘Pride’s Children finish file,’ where I flesh out, just a bit, the structure of the remainder of the story, and leave instructions with my literary executor to provide the file to those who have signed up to follow the serial. Not as good as finishing, but, in my mind, a whole lot better than leaving it up to the readers’ imaginations.

Coming full circle to the title of this post

Forcing my body to obey me.

I am in the middle of a great experiment to work with the many problems, and use some of the features of a medication (ldn, low-dose naltrexone) tweak, to have more usable brain time every day.

I’m already getting a couple of pool dips, and possibly a trike ride – to keep things functioning – every week.

And I’m using the data I record about how things go to see if I can’t figure out a more usable schedule that caters to my dysfunctionalities instead of fighting them. For some reason (recent successes?), I feel I might be able to do that now.

I won’t start serializing until I’m sure, but it’s been my dream since we moved to USE the increased time I have here at URC, and during the pandemic when the social life is restricted, to finish the books, and then take a break from the writing to market more extensively.

Time’s passing, time’s awasting.

Cross your fingers for me!

A brief survey

  • If you had a favorite book coming out with the same process that I use, a finished scene at a time, would you read it that way?
  • Some readers won’t tackle something that is unfinished; but would the ‘finish file’ concept reassure you?
  • If you’re a writer, have you had any experience with serializing – and how did it go?

I would love to have your answers in the comments.


Seniors beginning the covid-19 hard part

THE CONSEQUENCES OF SMALL MISTAKES MIGHT BE DEATH

That’s what makes it so scary.

We have now had one staff case of covid-19.

Management sent a memo, said this staff person is not in direct contact with Residents of our retirement community, and that they had done contact tracing with whoever might have been in contact with the staff person. They were waiting for the results.

Today, at our weekly half-hour QuaranTV closed-circuit broadcast, I asked, and was told the tests on the contacts have come back negative. We have not been told how the staff person is – they were home self-isolating a week ago or so, and we have not had any more information.

And a couple in Independent Living

is under their doctor’s care, and self-isolating in their apartment.

Word is they brought the virus in from somewhere they went, which could have been anything: a doctor’s appointment, a trip to the grocery store, dinner in town during the recent reopening (now canceled), or a trip to their Lake Tahoe home for a weekend or a month.

I understand privacy laws.

We will be told only what we need to know.

Which begs one important question in a facility which also has Assisted Living, Skilled Nursing, and Memory Support: can the person(s) whose contacts were traced be trusted to remember everyone they came in contact with?

A major facility rehab is ongoing

Painting, new carpeting, woodwork – the whine of tools is omnipresent.

The workers are doing their best – and need the work.

But I keep seeing people – Residents, staff, workers – who seem to not realize that the mask they are wearing MUST cover the NOSE as well as the mouth. Or is basically useless.

Why so many people are incompetent at that basic task baffles me.

They don’t seem to realize. I’ve seen someone when reminded put the mask up over the nose – only to have it fall off IMMEDIATELY – and then they do nothing.

How do we protect ourselves?

I personally treat the entire world outside our apartment as contaminated with a layer of a fine dust. The dust is invisible. The dust is like the radioactive dust from Chernobyl: invisible but deadly.

“If you could SEE the virus, would you go out?” asks a Facebook post.

Of course not. And if we did, we’d take it more seriously.

But that only includes those who listen to the scientists, and understand the concept that whatever you pick up needs to be delivered, at some time, to your eyes, nose, or mouth – the mucous membranes are their target.

Even just putting on my gear – nametag, mask, phone into plastic sandwich bag into pocket, keys into other pocket, backpack – is the start of the whole ‘you might be contaminated.’ I wash my hands at least twice when I come back: once immediately, and again once I have removed my outer gear, nametag, etc., etc. – just in case.

I don’t know if those who have gotten ill here – staff and Resident – were careless

I’m assuming they were unlucky.

Since we don’t know, AND THERE ARE NO PRECAUTIONS WE AREN’T ALREADY TAKING, it doesn’t really matter.

I won’t worry – I will just continue to do EVERYTHING, because I don’t know what people are thinking out there.

Wash hands. Don’t touch face. Wear mask. Do not give the virus, which you may assume you have picked up somewhere, A RIDE TO YOUR EYES, NOSE, OR MOUTH.

THIS IS STILL THE FIRST WAVE OF THE PANDEMIC

We in the States never defeated the First Wave.

The Reopeners are living in a fairyland.

There is no vaccine.

There is no cure.

The treatments are symptomatic – and don’t fix much.

If you end up in a hospital, you’re already in bad shape.

If you end up on a ventilator, your chances of making it out are abysmal.

An estimated 10% are NOT RECOVERING – still sick after months.

And we’ve now had several cases in our little enclave.

And Yolo County – and most of California – are finally paying attention and closing down, because there are more cases and more deaths – AGAIN.

I’d hate to be one of the unnecessary deaths.

One of the people who were refused treatment.

One who got the virus from someone acting irresponsibly.


It sounds self-centered, but the time will go by, regardless of how I use it. I’m writing. NETHERWORLD continues to get written, polished, and sent out to my lovely beta reader.

Me NOT writing will help no one.

If I’m still around, I will have made progress.


Which reminds me: I promised to leave a summary of the rest of the trilogy – so you know what happens – where it will be made available to anyone who started reading.

In case I don’t make it.


To the lovely person who bought a paperback: thank you! Hope you leave a review.

Some people prefer paper.

I set my ebook and paperback prices so I make around $5 when someone buys either; it seems about right.


Love you all. Drop by and tell me you’re okay.

Alicia


 

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?


 

The world is set up for sugar

Strawberry slices on a mound of white

Strawberry cheesecake – low carb style

THE SMALL PLEASURES IN LIFE LOOM LARGE WHILE ROME BURNS

One of the things we residents of this CCRC have lost in the quarantine is much of the choice we enjoyed and for which most of us moved here.

The staff and management are doing their best, within their capabilities, and under the auspices of California and Yolo County directives.

But the result has been an almost complete lack of being able to make our OWN choices in a timely manner.

They have brought back a small opening of the dining facilities

From having dinner delivered in a plastic bag in takeout containers every night for over two months now (and we are grateful to have been fed), they gave us three options:

  • the dining room, with appropriate distancing, and no one but the inhabitants of each apartment at any table (so, couples or singles alone at each table), and the staff will bring selections from the buffet – no more serving yourself
  • a continuation of delivery, where they will give you the first of the buffet selections (unless you have registered a restriction – I don’t eat fish or lamb, for example, so they will bring me chicken on those nights where for some unfathomable reason fish and lamb are always coupled on the menu)
  • La Brisa, our more relaxed dining venue, will now take orders on the phone (from an extremely limited menu), and let residents themselves come down 15 minutes later to pick up a paper bag (at a table that looks like it’s a field hospital) with the meal and take it to their apartment to eat

So what does this have to do with strawberries and choice?

This place has never managed a proper low-carb dessert for me.

The options on the menu, butter pecan ice cream (I hate butter pecan – soggy pecans), carrot cake (quite good), and a chocolate cake (also good), and occasionally a NSA (not National Security Agency – No Sugar Added) brownie, sometimes an NSA pie (loaded with carbs, but no sugar in the filling), but never a cookie or a pastry or anything special like that, ARE ALL SWEETENED WITH SUGAR ALCOHOLS.

Here is the ice cream label (note the warning for ‘Sensitive Individuals,’ of which I’ve never really thought I was one):

Butter pecan NSA label

Maltitol syrup, polydextrose, and sorbitol are the culprits, and maltitol syrup is the cheapest – and most reactive – of the sugar alcohols, and the most likely to make me have horrible gastric effects. I spare you the details. I never consumed more than ONE serving a couple of times a week.

And the dining room has never had a label on these products.

Anyway, it means I can’t trust them to give me a dessert I can eat

So I make my own using almond flour (very low in carbs, especially compared to wheat flour – and rather expensive, since it is just ground up almonds), Splenda (sucralose I tolerate, though it’s never as sweet as it’s supposed to be), real cream, cream cheese, butter, and flax meal.

I made a cookie-like base (hidden under the pile), which actually tasted almost as good as a graham-cracker crust. On top of that I put a cream cheese/cream mixture with aspartame and Splenda and vanilla. And on top of that, a nice layer of one of the lowest-in-carbs fruits, strawberries.

It was delicious!

Takes a while to put it all together

So I’m going to have to find a source of commercial desserts which use sweeteners I tolerate, but the problem there is freezer space: we are at capacity and anything frozen would take up a lot of space.

So, no good options, but I can at least, when I’m willing to put in a half hour, come up with something I wouldn’t be ashamed to serve Julia Child (if she couldn’t eat sugar).

And beautiful besides – not just sweet.

The bottom line

I pay just as much money here every month as every other resident – only I don’t get what I need in the food department. Something needs to change.

And of course right now we’re all just happy that they’re still dealing with food and dinner in general, because though the option exists all the time to get your own ingredients and do your own cooking, it is one of the hassles we came here to give up.

Small pleasures can make dealing with the much larger issues of pandemic and police and protests we are facing – from lockdown – a little easier on the mind.

When I feel I’m focusing on something petty, I remember everybody else here gets a different delicious dessert every night – without ANY effort on their part.

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.


 

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.


 

Easter with bunnies but no peeps

A takeout container with a sugar cookie pink bunnie and a petit four with bunnie decorations

Bunnies!

OUR STAFF CONSIDER OTHER NEEDS THAN FOOD

This is a good place.

In ordinary times, every holiday gets celebrated – and there are special meals, special desserts, alcoholic beverages (Mimosas, anyone?) for holidays.

The rest of the time you may bring your own wine and beer, or purchase it by the bottle or glass. Very California wine country, our neighbors.

The decorations are wild. Staff wear special extras. It is so Christmassy at Christmas, that we don’t feel the need to decorate our own digs.

So tonight’s dinner – which I haven’t eaten yet because I had lunch and then went out for a trike ride before dark – came with extras.

Bunnies – 2 cookies, 2 petit fours

My very favoritist thing in the whole world is the tiny petit four.

The yellow bunny and the other petit four didn’t survive to be photographed. Then I thought maybe I’d take a picture and share.

Dinner was acceptable – ham and shrimp – unless you don’t eat those, and then there were other options.

But dessert came protected by its own recyclable (5 – so not very) container to protect the delicacies, at least until they got near the person who eats bunny ears.

The day was gorgeous

It got up to 73°F, and I went out for a nice slow trike ride – I’m managing a couple of rides a week since I don’t have to save energy for the pool days. It’ll do.

I’m never going to get that much exercise, as it is contraindicated (at least getting very much is – heart not supposed to go aerobic because it can’t sustain that).

But it’s beautiful out there in Davis right now.

img 1073

which I didn’t get off the trike to get close enough to identify, but might be bougainvillea or could possibly be crepe myrtle (ours in New Jersey was that color).

StreetsIMG_1046 are mostly deserted.

But riotous growth requiring significant pruning hasn’t occurred yet.

Not very exciting, but I recognize the need to get out of the building, and onto the greenway periodically, for mental health.

Family visits with the kids, and with my sisters in Mexico, made the holiday special – we’ve promised to do it often, now that w’ve all figured out Zoom (thanks for making it free for 40 min. ‘meetings’).

Keep celebrating, keep sane, keep doing something you love

This won’t last forever, and we’ll want to account to ourselves for what we did, read, ate, and wrote.

I’m writing – the second book in the Pride’s Children trilogy, NETHERWORLD (for the hell the characters must go through at times) – is coming along nicely.

It’s about time! I thought we’d never run out of things that absolutely had to be done before we could settle down into quarantine, and that required my attention personally, but it has happened.

None of it included organizing or cleaning – so I have little to show for it.

But today marked the completion of a scene started just a week ago, which I thought was going to be almost impossible to write, but when I settled down, followed my checklists and my process, and focused only on the piece at hand – it went as it always does, right down some path deep in my brain that I can’t anticipate exactly, but includes all the stuff loaded into the ‘must go in this scene’ list – and somehow makes sense.

Don’t ask questions of your muse, lest he or she decide you aren’t trusting enough!


Hope that, amid the chaos, there are things going well in your life, even if they aren’t any bigger than a pink sugar cookie bunny – or the picture of chocolate bunnies with face masks my husband forwarded this morning from wherever he found it.


 

Stress may make you very clumsy

Section of pristine-looking carpet with toes of two socks

I can’t see the stain; can you?

SOME THINGS WORK RIGHT

What is the significance of a photo of a section of carpet?

Lately I seem to be more clumsy, especially in the kitchen.

Because standing is painful, and awkward, AND I hurt my shoulder a week ago (it’s mending – slowly, as we ME/CFS types heal), I do a lot of my meal preparation sitting on the seat of my walker (Sylvia – yes, I name things, and she’s been with me over 15 years).

The walker seat has sides, and my arms and elbows sometimes run into its frame.

And for some reason (yes, I’m paying attention in case it is a real problem), I keep dropping things and bumping into things.

It is a small kitchen.

And the pullout cutting boards make very good food-preparation surfaces.

And I try to do everything I possibly can for myself – not wanting to overburden the spouse when we hope there will be many years ahead.

So, last night I heated my dinner…

Chicken with a cream sauce, and cottage cheese.

I set out for the living room where the husband was watching TV.

I got about three steps out of the kitchen when I used the ‘F’ word, very loudly.

Our nice lightweight plates have no friction with the walker seat on which my plate rested.

And I dumped a FULL serving of chicken, cream sauce, and cottage cheese – right in the middle of that space I photographed.

If I had been thinking of y’all, I would have photographed it BEFORE I cleaned it up.

I just want you to admire that job

I immediately rescued that which could be rescued.

Removed the rest of the larger bits with paper towels.

Fortunately, yesterday morning was housekeeping day – and everything had just been vacuumed (could have been – and was – FAR worse before they decided to give us housekeeping back).

Then I got out what our eldest has recommended, Woolite pet odors etc. + OXY, cleaner.

I sat down on the rug.

I followed instructions:

  • Spray, do not soak, do not scrub.
  • Let rest 5 minutes.
  • Blot with clean white towel.

Five minutes later, and I came back, did the blotting.

And took a picture, because I could not believe what a good job this stuff does, even though I’ve used it before, in NJ, on carpeting of that color – but with red wine or Birch Beer soda or spaghetti sauce, all red.

I think it’s the OXYgen. Good for organic spills.

And possibly that I attacked immediately.

You REALLY can’t tell.

And that’s the story of the photo.

The clumsiness I’ll have to watch.

It may be stress.

It may be the beginnings of something else.

Or it may just be that sitting to do things is awkward.


Dinner was delicious. Mostly cold. I didn’t care by then.