Category Archives: disability

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.

 

Sleeplessness is where coronavirus stress shows

I FEAR THE FEELING OF FALLING ASLEEP

I have to confess that I’m not normally an easy sleeper.

Partly because late evening I feel almost human (it’s not real – I don’t make good decisions then, and I can’t write then).

And partly because every single morning is a struggle to get myself into a state where I can function at all.

Here at the retirement community I’ve had the ability to sleep later in the morning, and to take naps whenever I need to (or should) take them, I have been able to compensate – and get enough total sleep during a day so that I’m not a complete zombie (there’s a reason sleep deprivation is literally torture).

But it’s mostly fear

I have learned, grudgingly, to give in to the sensation of losing control of my own mind – because I try to master my fears.

But I have never liked the loss, and I fight it – especially when I’m tired and my decision-making faculties are diminished – and I can literally force myself to stay awake if I think something bad is going to happen that needs me to be coherent to deal with it.

This is NOT improved when I wake up in the morning and something new hurts.

Or I find the body position I’m in has resulted in one ankle pressing the skin and flesh on the other ankle into something completely flat that aches and cramps as the blood returns, quite painfully.

Or the medicine that I took right before sleep has decided to dissolve in the back of my throat and wake me with uncomfortable pressure in the middle of the night.

If I could skip sleep

I would. Almost every night.

But I feel worse without it.

And I know intellectually that sleep is so critical that a form of torture is to not let people go to sleep.

I also take 3-5 half-hour naps during the day to rest my brain: if I haven’t had enough sleep the night before or days before, those naps can turn into deep sleep with nightmares during the day. Even with an alarm.

The lockdown and the coronavirus make it hard to let the day go

The tireder I get, the less I can use my mind to suppress the things that are worrying me – as they are worrying everyone on the planet right now: my personal situation re medical services, the lives and careers of my children, and of my family in Mexico. The uncertainty of tomorrow.

Knowing we haven’t had a case here (probably), and wondering if we will – given the news that the virus rips through senior communities leaving devastation in its path.

Since it’s a constantly changing situation, we can’t relax into a new routine, because nothing is routine now.

So I have trouble sleeping.

I’ve tried most ‘solutions’

But I either can’t take them (I tolerate very few meds) or they require me to do something at a time my brain isn’t capable of it.

And you can’t cure existential angst – it’s real.

Meanwhile, I brush my teeth, make sure I have something I can eat in the middle of the night, do my stretches for restless leg syndrome, say my prayers – so that when I reach that point every night where all of a sudden sleep is worse than continuing awake, all I need to do is lie down.

And the battle to stay asleep begins.

Because it’s never a one-time decision.

Things that keep me from staying asleep:

  • hunger
  • uncomfortable binding around any part of me
  • anything bumpy under me
  • pain
  • worry
  • a thought in the middle of the night that must be written down
  • sometimes (!) fiction
  • being too cold or too hot (repeat several times each night)
  • gut pressure (what the heck did I eat?)
  • thirst
  • the sound of the firetrucks and ambulances coming to the lobby
  • outside sounds (do they really have to do these things mid-night?)
  • rain
  • husband’s breathing
  • funny tastes
  • a muscle that twitches every ten seconds for hours
  • etc.

I can now consume cottage cheese in the middle of the night without waking – much. Which then requires that the next chunk of ‘sleep’ be done sitting up a bit.

If I’m desperate, I turn the computer on and play sudoku or something – after about an hour and a half (one sleep cycle), my body is given permission to try again.

And eventually it takes. And sometimes I can sleep enough into the morning to almost have a decent number of hours’ worth total sleep.

I don’t think it will get better for a long while – the world has turned and is now essentially unstable.

Who wants to go to sleep when it might be your last time awake?

Which is silly, because ‘going in my sleep’ is my preferred method of checking out!

Because I’m not ready. Honest. I’m in the middle of a novel, the middle of a trilogy, and finishing them is the plan.

Even if ‘plan’ has become a joke.

Hope y’all do better at this sleeping thing than I do.


 

Riding out the storm in a CCRC

A Continuing Care Retirement Community (CCRC) is a giant bubble.

I went swimming (okay, floating around) in the indoor pool for the first time in almost a month, since I got the flu.

Not another soul around.

On the way back, I went outside for a short bit – and we had dinner with friends.

This is as normal as it’s going to get. Our hatches are battened down. We are in a virtual lock-down – no one in from the outside who isn’t necessary.

Food selections are far fewer – but still someone else’s job. The servers, many of them high school kids and college kids, are doing a lot to keep us clean, and counter and door knobs wiped – and we’re going hard doing the same.

It’s going to be long – we were estimating it will take at least a couple of months. So we are cautiously supporting each other, and happy we moved here – this would have been soul-killing in NJ, even though there are so many more potentially infectious people here.

I don’t know what will happen – apparently this is Level 2 – and they have plans up to Level 5!

I wonder if the service was as good on the deck of the Titanic.

Outside people – staff

First, our staff. For 350 or so people, we have 200 staff.

TWO HUNDRED PEOPLE who go home every night and come back the next day.

All of our staff live in Davis and the surrounding communities, including Sacramento.

Outside people – family and friends

A very large percentage of our residents come from the city of Davis (where the University of California, Davis, is located). Many taught at UCD, reared children in Davis, and/or still have a child or grandchild in the city.

For Sunday brunches and holiday meals like Thanksgiving and Easter and others, we have to make reservations in advance because so many family members come here. For a quite competitive price, it is easy to have your whole family come here for the holidays. After, while the grownups are talking, it is easy for a few of the parents to take the more wiggly kids swimming to tire them out.

So the connection to Davis is strong – and large.

We have been asked not to have any nonessential visitors – INCLUDING family members. No restrictions on going out – yet. Our oldest from San Francisco will not be coming.

Outside people – everyone else

Firefighters and ambulances are common here – they respond to all kinds of 911 calls, from falls to potential fatalities.

Outside workmen are here all the time, involved in ongoing maintenance and refurbishing the 10% of apartments that turn over in a typical year. There was a guy walking on the roof on the other side of the building this morning. Our roofs have just been replaced – possibly some kind of inspector.

Delivery personnel, including post office employees, are here daily – the front desk handles a mass of packages from all over. These people are now being asked to stop at the front desk and take a temperature scan, and their entry into the building is being minimized.

Staying occupied and involved will be up to us, individually.

All other groups – and we have concerts, lectures, trips, movies – from the outside are being canceled. We are mostly staying in our apartments – not congregating in groups of more than 20 has been requested by management.

We’re trying to ‘flatten the curve’

All we can really hope for is slowing the contagion. The concept is well delineated in a graph from various sources; FastCompany has the story AND several versions of the graph, including one that emphasizes what place like our CCRC are trying to do.

The idea is simple – even for those with a limited science/math background: our healthcare system (NOT uniformly spread over the whole USA) has a certain number of beds in intensive care (under a million), of which about 10% can support critical patients who need help with breathing (about 90,000 beds).

If we have too many people getting to the critical point where they need breathing support (like currently in Italy), then there literally will not be enough of these hospital beds to go around, and doctors will have to make tough choices about who gets one, AND THEY’RE ALREADY PLANNING ON THROWING OLDER PEOPLE AND PEOPLE WHO ARE ALREADY DISABLED or ILL WITH OTHER PROBLEMS (like ME/CFS) UNDER THE BUS – BY DENYING THEM ACCESS TO THE LIMITED BEDS.

So it is crucial to have people get sick at a slower rate.

Because we have no tools to STOP the virus yet. No vaccine, no immunity.

Slowing contagion is done by increasing the distance between people beyond 6 ft. (droplets from coughs make it about that far). Not going out. Not bringing people in.

And by proper cleaning techniques for surfaces (the CCRC staff plus residents are decontaminating surfaces frequently).

And by not transferring any virus particles to ourselves: proper hand-washing, and NOT touching our faces with hands which might be contaminated.

By letting medical personnel know if we have any of the symptoms: fever, cough, headaches… so a sick person can be further isolated if appropriate – and helped to get better.

It still takes SEVERAL WEEKS in intensive care to recover, if you’re one of the critically ill. During that time, you will be occupying a bed and having a lot of help with breathing, and taking a LOT of time from medical personnel.


That’s it for the current state of our waiting, quietly trying to conserve resources and delay the onset of the inevitable as long as possible.


Be sure you have books to read, ahem – long fat complex books – while waiting out the storm.

Maggie I have loved too briefly

s-l500

Robot – Emotional support – Miniature riding horse

From Sep. 12, 2019 to Jan. 29, 2020, I had Maggie to ride.

Maggie is an Airwheel S8.

Like a bicycle seat on a post on a hoverboard. ‘Maggie’ for the magnesium alloy she is made of. Maggie is black.

When I rode her, all it took was a tiny shift in my center of gravity to zoom off in all directions.

She is broken – I hit a curb.

My entire life changed when she became part of it, and I don’t know if I’ll be able to get her fixed (she’s Chinese, from somewhere near Wuhan). I’m back to dragging myself around with a walker; because I have ME/CFS, and little energy, it is literally dragging myself.

Some day I will need a scooter or a wheelchair, but not yet.

Meanwhile, I mourn. I don’t know when I’ll get another, or Maggie fixed.

I am SO glad I have had her. She was my 70th birthday present to myself, and the bigger gift was that I could ride her, and will never have the regret that I didn’t try.


 

You’ll never guess what I’ve done

Alicia sitting on an Airwheel S8 (a bicycle seat on a platform with gyroscope stabilization)

ALICIA SITTING ON MAGGIE, MY AIRWHEEL S8

Start with the obvious: what the heck is that?

Her name is Maggie because she is made from a magnesium alloy.

Conceptually, think of  a ‘seated Segway-type device’, and imagine me zooming around the Davis greenway this afternoon, just to get out of the house.

In addition, I have Trixie, my adult trike:

img 0797

with her basket:

img 0798

for days when I have energy for exercise (and don’t even want to think about plugging her into an outlet).

And lastly, I have my trusted Sylvia (Who is Sylvia?), my Invacare walker (no pic).

These are the devices that I use to get around our new home (University Retirement Community at Davis, California).

Maggie requires the least energy from me.

Here’s the picture of one of her siblings (from an ad):

Airwheel S8

I bought her on Ebay for around $500. There are more, but I have the feeling they may be produced at the factory in batches. I got the two-year Ebay Fair Trade Warranty, which I hope never to have to use, and joined the Electric Unicycle Forum, so I have a place to ask questions (Maggie is in one of the subcategories). These devices are powered by electric motors, and gyroscope stabilized.

How did you find Maggie?

Starting over three years ago, I googled ‘seated Segway.’ Segway doesn’t make one, but I can’t stand for very long, and need the seat.

Also, I have very little energy, and I try to use it for my writing (you all remember my writing, right?).

I watched videos on Youtube, with my favorite being this. It is short (23 seconds) and so cool. I wanted to be her.

Then I checked Ebay, and found several vendors offering the Airwheel S8.

The rest has simply been convincing myself that I could do this. That it wasn’t the craziest thing someone my age (late 60s when I started looking) could even consider. That I should try it quietly riding around the corridors late at night (the corridors even have hand-rails – I haven’t needed one once).

Why?

But I knew I needed something like this because this community of around 350 people are mostly in four floors of a single building, and the halls are very long to get to places.

I can’t do so many things because I don’t have the energy to get to the rooms where they happen. Even going down to dinner was painful and energy-sucking; I did a lot of it scooting backward while sitting on the walker’s seat, looking over my shoulder.

I want to remain INDEPENDENT as long as I possibly can. I don’t have the energy to push myself in a manual wheelchair.

And I am simply not psychologically ready for a powered wheelchair or scooter (besides which, they occupy a lot of space, both in halls and when parked).

But what if you fall on your face? Won’t you look foolish?

Ayup.

The thing that surprised me the most was how easy it was.

Charge Maggie up (3 hours max). Push the red button on the base. Push the red button on the remote – and she comes to life; beep! Sit on the saddle; beep! Put one foot on the base, dare lift the other foot onto the other side of the base.

Ride into the living room and startle the husband. Go out and try it in the hallways. Done. Go home and wonder if maybe watching the Youtube videos taught me subliminally – or it really is just that easy. Ayup.

Show people in small quantities.

Within a week all pretense is over, and I’m showing off every chance I get – haven’t been this cool and the center of attention in decades.

Do you have to balance?

Not much. It’s as if you were sitting on a bicycle seat on a post on the ground. Maggie does the stabilizing by reading your slight tilt, and feeding power to the wheels to follow your commands: slight lean forward or backward to go (move toward neutral position to stop), press on the seat with your inner thigh to twirl.

I am far more stable on Maggie than on my own two feet. Irritating, but I have no choice – the nerves to the muscles on the back of my legs are damaged, and only transmit a small amount of my instructions. On Maggie I can literally just sit there, not moving at all.

Going for a ride

The hardest movement (gulp) was the first time I was faced with a downward slope. A tiny downward slope. I held onto Maggie and walked down it. The next bit was an upward slope, so I tried that sitting – rock solid moving slowly up the slope. The next downward one (gulp) I just rode down, just as stably. Huh. Within ten minutes I was doing the slope up and down to the underground garage.

Since then, curb cuts. The bumpy things they put there for blind people to sense (way too bumpy, if you ask me – poor blind people!). Driveways. Speed bumps!

The biggest danger is cracks in the sidewalks and between cement sections of sidewalks and streets – anything uneven. Maggie scoots over them while I hold my breath the first time. The asphalt paths around here have deep fissures, so I do have to watch where I’m going.

Inside, I come to almost a complete stop at corridor intersections – don’t want to knock any of my fellow residents down.

Enough for now

Many more things have been occupying my time, and I’ll post about some of them (sorry it’s been so very long since I blogged).

Adjusting to the LDN (low-dose naltrexone) has been tricky. Adjusting to the social life has been time-consuming.

But I’m finally writing consistently again (my beta reader thinks I haven’t lost my touch), have some control over where the energy is spent (we’ve used the pools a lot in the hot weather), and, as the dining room manager said tonight, “You seem much happier since you got Maggie.”

Happiness it is. I had a crazy idea to save my energy – AND IT WORKS!

Now all I have to do is reconstitute some of my singing options from New Jersey, here at URC, and I’m set in a good place.

Husband admitted tonight that he’s proud of me – and seems to enjoy explaining Maggie to the masses.

Stay tuned. Questions welcome – I’m turning into such a ham: I stop, demonstrate, and talk about Maggie anytime someone smiles!


Pride’s Children NETHERWORLD is proceeding. Prepare by reading PURGATORY – I haven’t had ten seconds for marketing, and the readers have been commensurately few. If you like it, please recommend me to your friends.

And I’m working on getting the Prequel short story TOO LATE published.


 

New after a year Low-dose Naltrexone

Baby coffee plant with around a dozen leaves in a blue and white ceramic pot

I WOULD RATHER SAY I’M WRITING REGULARLY

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

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

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

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

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

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

Something has changed since the move.

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

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

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

It isn’t the time commitments

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

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

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

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

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

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

as frequently as I need it to.

For as long as I need it to.

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

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

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

To give the ol’ brain some help

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

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

I want less brain fog.

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

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

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

But back in New Jersey I could still manage to write

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

And you don’t mess with what works.

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

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

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

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

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

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

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

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

What does the future hold?

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

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

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

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

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

I’m on it.

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

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

And how are you?