I haven’t posted here for a while because of my struggle witih all of the problems caused by my Delayed Sleep Phase Disorder — including not being able to find any Sleep Clinics in my area that know how to deal with this problem.
Finally, I did a search for someone, anywhere, who is an expert in cicrcadian rhtythm disorders. I found one a Harvard and emailed him. Not only did he respond quickly, but he immediately referred me to his colleague at the Sleep Clinic at Beth Israel Deaconess Hospital in Boston, and also gave me some advice about when I should be taking my medications — which depends on my specific circadian rhythm.
A telehealth visit with the Clinic was quicky scheduled, and, during that appointment, I found out that there are saliva tests I can take that provide data about my specific circadian rhythm. I was also told to get a test for my iron level, because I might need to go and get an iron infusion. I never knew that iron levels can affect sleep.
I received the test kit in the mail the other day. The process of gathering up the saliva is complex, and the results need to be immediately frozen and shipped out with an ice pack. The cost could be as much as $350 because Medicare does not like to cover it, but if I can fix this debilitating disorder it will be worth it.
I might have to go to the Boston hospital at some point, but my daughter said she will drive me.
Meanwhile, I went to my Primary Care to get my blood pressure checked, because the wrist blood pressure machine that I have was giving very high readings. At one point, the machine told me that my blood pressure was too high to even register. When the nurse took my blood pressure, it was higher than it should be, but he suggested that I try a few things before I am presdribed any meds. I admitted that salt is a big thing with me, and I had been binging on bags of Cheetos, which are even saltier that potato chips. So I am investigating other ways to flavor food, and I have severely curtailed my use of salt. But the readings I am getting on my home machine are still high. Blood pressure affects sleep, so I have to take this seriously.
I am still tired all of the time, despite sometimes sleeping for 10 hours. I am not a happy camper, but I will follow through with the Clinic’s suggestions and see where I wind up.
Because my daughter is strugglng with A-Fib and asthma, I limit my excursions out into the pandemicked world to avoid bringing anything home. When I do go out, masked and careful, it’s to run errands, and I come home exhaused. Mental? Physical? All of the above.
How bad do I have to get, mentally, to get help? Now I am bouncing off the walls in some kind of manic episode.(Not the first one, as of late.) My daughter thinks that I am getting to be bi-polar — or maybe I have been all of this time but have been able to manage it. But now it is all out of control. We are still looking, but I am getting very discouraged. I need to find someone who will both do therapy with me and help me manage my meds.
I’ll bet you didn’t know that I’ve really been crazy for all of these years.
If you read this and have any knowledge of available psychologists or psychiatric nurse practitioners who are still accepting new patients, please let me know.
I want to go to sleep and never wake up. (Don’t worry, I won’t do anything about that; it’s just how I’m feeling).
I am contacting neurologists throughout my region to try to get help for my Delayed Sleep Phase Disorder, but I have had no success, despite the fact that DSPD is a neurological disorder. They will treat insomnia and dementia. But not the neurological problem that I have. And it is not that uncommon. One out of 600 adults suffers from some form of Circadian Rhythm disorder.
The other day, I came home from CVS and left my car running in the driveway. I leave doors ajar and faucets running. My cognitive functions are rapidly deteriorating. I no longer know when to take my meds, since day and night, for me, are scrambled.
I have never been closer to a mental breakdown. I almost welcome it if I could get drugged into oblivion.
It has been three months since my last post. I have spent these months searching for medical help with my Delayed Sleep Phase Disorder. None of the so-called “sleep” doctors I’ve been to ever mentioned the possibility of DSPD. In desperation, I just sent an email out to a neuropsychologist because the stress has affected my usually-easy-going temperament, and I don’t even like myself any more.
Also, during these few months, the family brought a rescue dog home. He was smart, sweet, and cute, but he would not stop biting when playing. He went back to the rescue. So, last week, they brought home a cute, sweet, gentle rescue kitten, who is still sequestered in the upstairs bedrooms because their current prissy cat refuses to have any of it.
My plans, after the holidays, is to go the shelter and get a senior cat who just wants to snuggle. I need the companionship. I need the touching.
I need to find a way out of his personal sleep hell. It has affected my digestion, because when I eat depends on when I sleep. When should I take my meds? I often don’t even know what day it is. It’s making me crazy.
ADDENDUM: My daughter just told me that when I got home from the store yesterday, I left my car running in the driveway. It’s a good thing my grandson noticed the car’s lights were on. I am definitely losing it, fast.
A maze is a complex branching (multicursal) puzzle that includes choices of path and direction, may have multiple entrances and exits, and dead ends. A labyrinth is unicursal i.e. has only a single, non-branching path, which leads to the center then back out the same way, with only one entry/exit point.
These two structures have different, although related, meanings. Yet they are incorrectly used interchangeably all of the time
A labyrinth, while sometimes having very convoluted-seeming pathways, really only has one way in and one way out. Walking a labyrinth invites patience, focus, care, introspection. The goal is not to find your way out or in. That’s all laid out for you. You can’t get lost.
There is no set ritual for walking a labyrinth, but there are books and lectures to assist you in performing a labyrinth walk. The basic advice is to enter the labyrinth slowly, calming and clearing your mind. This may be done by repeating a prayer or chant.
A maze, on the other hand, invites you on a challenging journey to find your way in and your way out. Its pathways are meant to be disorienting and its goal is to confuse you. According to Wikipedia:
A maze is a path or collection of paths, typically from an entrance to a goal. The word is used to refer both to branching tour puzzles through which the solver must find a route, and to simpler non-branching (“unicursal”) patterns that lead unambiguously through a convoluted layout to a goal. (The term “labyrinth” is generally synonymous with “maze”, but can also connote specifically a unicursal pattern.) The pathways and walls in a maze are typically fixed, but puzzles in which the walls and paths can change during the game are also categorized as mazes or tour puzzles.
The Minator lived in the middle of a MAZE – a maze with such complex pathways that Theseus, sent to kill the monster, might not have been able to find his way out after he completed his task. So he tied a ball of string to the entrance to the maze and unwound the string as he went in so that he could follow it back and be able to get out.
So, while a labyrinth can be classified as a “maze,” a maze is not the same as a labyrinth.
This is what I was thinking about the other night, waiting for sleep. (Sleep doesn’t come easily or me).
I am thinking that some folks seem able to walk the safe, set pathway of the labyrinth life-model. Some by choice, like cloistered nuns and monks, who are relieved of the kinds of personal choices that are constantly confronted by those who find themselves navigating various stressful life mazes. Others, because of personality traits or very careful controlled planning, find their lives moving within the ease of the Labyrinth. There are still others who allow themselves to be absorbed into a cult mentality that provides the boundaries and makes their choices for them, making hard life choices simply by giving them a labyrinthian framework to follow. If they don’t deviate, they will make it to the goal (however the cult defines it). Organized religion also provides that clear pathway, so much easier to navigate than that messy maze.
Most of us, however, can’t avoid the stresses from the constant choices with which we are confronted along the maze-like journey of our lives. We constantly bump into dead ends, go around in circles, sometimes just sit down wherever we are, too tired to go on. I also think that if you are a creative person who engages with life to find inspiration, motivation, questions and answers, you have no choice but to take your chances in those messy mazes.
Like a Stone Labyrinth
Life leads you.
You set your alarm,
choose your shoes,
gather friends for tea,
count your changes.
Until one day a corner comes,
slipping you a glimpse
of that line of stones
shaping your shadow’s edge.
And then a perfect black cat,
with eyes like glowing stones,
races across your path
and waits in the early ferns
for you to cross hers.
If I have strong enough marijuana to ingest, I can sleep, but I still don’t fall asleep until 3 a.m. If that stops working for a while, I revert to taking night time cold medicine — double dose. (I can’t drink alcohol because of my Reflux disease, and I can’t get a sleeping pill prescription because of my age.) My brain seems to ignore the effects of sedatives unless they are pretty potent. It makes me wonder if some synapses in my brain have become immune to sedatives.
When I do sleep, I dream — elaborate scenarios, filled with people I know and people I don’t. One of the people I don’t know is a guy. I never see his face, but he is obviously someone I am close to, emotionally and physically. He hugs me, holds me, whispers in my ear. Obviously, I am compensating for these things I no longer have.
I have been missing that kind of interaction for more than a couple of decades. That is how long I have been without a relationship with a man — more because of situation rather than choice. My situation has also taken me away from close women friends that I have had for more than 40 years. And Covid-19 makes it very hard to be optimistic..
So I have a much more enjoyable dream life than my awake life. And so I sleep. A lot. Yes, it’s an escape during these depressing times, and yes, I take an anti-depressant. There are days I sleep from 3 or 4 a.m. until my daughter wakes me for dinner the next day. I need to find a prescribing psychiatrist to determine if I should be taking something else and to help me figure out the rest.
For now, I am addicted to sleep and the dreams that come.
Years ago, I saw an episode of “Ally McBeal” that featured an old woman who is dying in a hospital and was put in an induced coma. When they woke her up, she insisted to be put back in the coma, where she lived a whole other life as a happy, young wife and mother. She was much happier in the coma, and she was dying anyway. I get it. I’d rather be sleeping and dreaming rather than experience the dreariness of what my daily personal life has become.
I used to be able to amuse and entertain myself creating stuff — sweaters, upcycled t-shirts, learning to paint and draw, cooking….. Not these days. I used to dance for exercise. Not any more with my escalating arthritis and torn rotator cuff that will never really heal. I used to go for short late afternoon walks. Instead, I now sleep.
Maybe the results of the coming election will lift some of my depression. But not all of it. I have to figure out how to get rid of the rest of it. I’m assuming the psychiatrist will help.
But in the meanwhile, my life will be what it is, and my dreams will be my escape.
It’s so frustrating that my sleep issue is one that so many elders experience. We create vehicles that explore outer space, but no one has figured out how to solve the problem of elder insomnia (which must be associated with how the brain ages). And neither has anyone figured out how to make a removable partial dental bridge that actually fits and works.
I never worried about getting old. I figured that I would deal with it when it happened. Well, it happened, and I’m not dealing with it very well these days. Objects seem to fly out of my grasp. I’m constantly misplacing things. If I get down, I can’t get up without help. I trip when there’s nothing there to trip on. The technology that I used to use without a second thought now requires too much figuring out. It doesn’t help that, back in March, I accidentally sent my removable partial denture down the garbage disposal, making it unusable, and it’s taking forever to get a new one. I lose track of my finances and find myself owing more than I thought. My crazy sleep pattern doesn’t help, of course.
It wouldn’t have helped if I had worried about getting old before it happened. There’s no way to have known what it was going to mean for me. Everyone is different. My mother lived until she was 94, but her last 10 years were lost in dementia.
I wonder who those old people are who go out dancing, marathon running, paddling canoes. Of course, I’m assuming the Pandemic has put the kibosh on all of that now — unless they are the deniers. Good luck to them, I say.
I finally let my hair go gray more than a decade ago, and I was very happy with it. Only now, my hair is thinning. Not so happy, now.
The other day I took a magnifying mirror outside so I could see my eyebrows, which are also thinning – except for the long wiry white ones, which I plucked out. I suppose I could get one of those eyebrow stencils, that so many of the folks on tv seems to be using, but I think they look horrible. Not many choices here for me.
Over on Ronni Bennett’s blog, she has been chronicling what it’s like to get older. Exactly my age, she is now chronicling how she is dealing with the pancreatic cancer that is literally killing her. She is heroic in dealing with her situation. I wonder how I would handle it.
Don’t get me wrong. I am grateful that I can still drive, blog, see the tv, chat on the phone with the one close friend I’ve been able to make in the ten years since I’ve moved here (more on that another time). Grateful for the support of my family, especially during this time of quarantine.
The Big Picture these days is like a Gordian Knot. From the domination of the patriarchy and its greed for power and resources, to the negation of any kind of true social and legal justice, fixing the Big Picture is going to take public persistence, strategic action, and (ultimately) creative cooperation to either unravel or discard the current system.
As a White, progressive, middle class extended family, we support working toward re-building our society into a world view that values all life, that prioritizes ethics, equity, compassion, and diversity, and that supports the development of the best of human potential to solve problems in ways that meet the needs of all sentient beings. We make an effort to find common ground – even with antagonists – as a starting point, and often that starting point begins in learning about, understanding, and accepting the truth of each person’s personal journeys and experiences. But too often antagonists don’t want to find common ground, and so there is no place to start or proceed, especially since we are living in a world that seems to have lost all shades of gray.
Decades ago, my (now) adult son was mugged and beaten by three men of color who robbed him of the meager amount that was available via his ATM. Because he was nurtured to understand the influence of the local environment in which these men most likely lived, he was able to move beyond anger and “hate”. As an adult, autistic and afraid of violence, he still lives his life committed to social justice and intersectionality. The road he travels is bumpy, indeed. But he persists in the best way he is able: by intelligent research,analysis, and writing.
When my grandson was 7 or 8 (he is now 17), he became enamored of firemen and their uniforms. Every week, he visited our local fire station, getting to know the firemen personally. Finally, they gave him a discarded uniform, including sections of the hose. He was so excited, he even wore the stuff grocery shopping.
I suppose his love of “costumes” was reinforced by the fact that we are a family with some history in theatrical performance, and his progression into costumes of “authority” was fueled by his feeling secure and protected when he wore them – fire fighter, EMT, detective, police, Dr. Who, Jedi.
So, despite all of his commitment to fairness, ethics, justice, and the goals of Black Lives Matter, and despite his acknowledgment that our system of policing needs to be overhauled, he cannot ignore his empathy toward the plight of some law enforcers – the cop who gets shot and leaves a wife and baby behind; the cop who doesn’t come forward and report unnecessary police violence because he is afraid his partner won’t give him the backup he might need in violent situations; the cop who needs his job to support his extended family.
In addition, my grandson is involved with an online game along with a young POC policeman from the Midwest who has become his friend. That cop has an unmarked police car that is his to drive and even take home. But he does not want to park that car in his driveway because he is afraid to make it public that he is a cop; he is afraid of his family being victimized by opposition forces.
The backlash my grandson gets from his “social justice warrior” friends when he tries to explain his feelings about the police, in his words, “hurts his soul.” But he perseveres in trying to explain why he feels the way he does.
We talk about these things over the dinner table. I tend to come down on the radical side of issues. He is a reminder to me not to forget that each individual has a personal history that is often ignored by critics – a history that might have room for some deserved “walk a mile in his shoes” empathy.
Many of today’s police are trained to believe they must be invincible and to accept violence in order to survive. In some ways, they are victims, whose own fears and bigotries have been co-opted to support a narrow view of law and order. My grandson reminds me that there often are understandable reasons why many of today’s police do what they do; there are understandable reasons why some folks are driven to rob convenience stores, at lethal gunpoint, for basic necessities. To keep our humanity, our empathy, strong, we need to be able to see some gray within all of the overwhelming “either/or” culture.
While Rudyard Kipling was a man with controversial political views, I am one of those who is able to look at art apart from the personal reputation of the artist. So I share with you a personally edited version of Kipling’s “If”, dedicated to my grandson. Edited pieces are in bold.
If you can keep your head when all about you
Are losing theirs and blaming it all on you
If you can trust yourself when all folks doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating, And not worry if you seem too wise;
If you can dream—and not make dreams your master;
If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:
If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings And move beyond the stress of loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’
If you can talk with crowds and keep your virtue,
Or walk with Kings—nor lose the common touch,
If neither foes nor loving friends can hurt you,
If all folks count with you, and some too much;
If you can fill the unforgiving minute
With sixty seconds’ of your soul beguiled, Your love of life will have no limit, And you’ll find your destined place, my child.
I invite any readers to open a discussion of what I wrote here (harkening to the style of the original “blogosphere.”) Or at least leave a comment.
In 1967, I was married and had a five year old. While others were in Washington protesting the Vietnam War, the most I could do was make a peace banner and hang if off a branch on the tree half-way up our driveway.
Their colorful protest methods were tailor made for the television cameras .For example, once they poured into the vast main concourse of Manhattan’s Grand Central Station 3,000 strong, wearing their customary capes, gowns, feathers and beads. They tossed hot cross buns and firecrackers, and floated balloons up toward the celestial blue ceiling. They hummed the cosmic “Ommm,” snake-danced to the tune of Have a Marijuana, and proudly unfurled a huge banner emblazoned with a lazy “Y.”
While Yippies were a radical bunch, their basic philosophy paralleled the movements today to establish equality in all areas of American life: We want everyone to control their own life and to care for one another … We cannot tolerate attitudes, institutions, and machines whose purpose is the destruction of life, the accumulation of profit.
The Yippies used mockery, ridicule and silliness to call attention to the wrongs of our society. Imagine how our current president would be affected by this kind of outrageous public contempt. What if a new generation of Yippies performed an exorcism on the White House, the way they did it on the Pentagon in 1967 at the “Be-in” protest against the Vietnam War.
This is how it went back then:
The initial conception of the protest had been to occupy the Capitol, but that might have sent the wrong signal to the public, suggesting that the marchers wanted to shut down the democratic process and thus were offering only more political negativity.
So, instead, they came up with the idea of an exorcism that would levitate the Pentagon 300 feet. Since the five-sided pentagram was symbol of the occult, representing evil forces at work in the world, the Pentagon was a natural symbol of the evil war and itwould serve as a far more resonant target than the Capital.. Time magazine later reported the intention of the proposed ritual would turn the Pentagon “orange and vibrate until all evil emissions had fled” and the war would come to an immediate end.
On the makeshift altar before the Pentagon, a number of competing rituals began simultaneously to unfold. Ed Sanders, of the rock band the Fugs, delivered an impromptu, sexually suggestive invocation punctuated with repeated calls of “Out, demons, out!” Allen Ginsberg declaimed mantras for the cause.
Two hundred pounds of flowers were trucked in and distributed to the crowd. When military police and marshals confronted the protesters, images of gun barrels blooming with daisies became the iconic photographs of the day.
As we approach November, I can’t help wishing there were a new version of the Yippies to dramatize the absurdities of our current Cheeto-in-Charge. I’m not suggesting that they disrupt the convention; rather I’m suggesting that for the two months before elections, a swarm of costumed political pranksters organize “guerilla theater” events to draw the attention of the public and the media to (my words) drive tRump even more crazy.
If he is even the least bit superstitious, I’m sure that anything smacking of magic and mystery will fuel his paranoia and insecurities. So how about an exorcism on the White House to rid it of negative energies — racism, bigotry, misogyny, elitism, etc. etc.
While there are no more Yippies, perhaps a gathering of witches:
ON MIDNIGHT LAST Friday, all over the United States, an alliance of magical practitioners called the Magic Resistance gathered Tarot cards, feathers, orange and white candles, pins, water, salt, matches, ashtrays, and unflattering photos of President Trump. The objects are prerequisites for a binding spell, an incantation typically used to keep someone from harming themselves or others, like a magical straitjacket.…
..Magic (and particularly witchcraft) has been a form of protest for decades, probably centuries, but protest magic has burst into the media and broader public consciousness only twice in recent memory: during the 1960s and now, during Trump’s presidency. In the ‘60s there were the yippies, but also the Women’s International Terrorist Conspiracy from Hell—W.I.T.C.H.—a pointy-hatted wing of the women’s liberation movement.
In 2016, the anonymous W.I.T.C.H. movement was resurrected by a group in Portland, Oregon, inspired by the injustice they see in the world around them, and in their own backyards ….. Sometimes they hand out tarot cards at events, edited to include a message such as “A vote for the health-care bill will mean DEATH for millions of Americans” on the death card. On their YouTube channel, they posted a video of one of the rituals they performed before a protest: the “binding” of Donald Trump.
The exorcism of the White House can be done virtually on a specific night over Zoom or some other platform. With enough chatter about it over social media before hand, perhaps the mainstream media might also cover it. The point would be to make our Hitler-Wannabe nervous and insecure as he is surrounded by the notion that mysterious enemy forces, over which he has no control, gave gathered to erode his power and his sanity. What great fun to add some fun to ensuring that he loses the election.
These are the sites I used for background information:
All around me. All around my insides as well as my outsides.
I am used to being able to have some control over my life of 80 yeas. I get it that Covid 19 is in the driver’s seat right now. One of my “talents” has always been that I am able to find some pieces of myself to hang onto even in the midst of various forms of chaos; but I can’t seem to find any of those pieces.
As grateful as I am for the support and protection of my family, that all comes at a cost. And the cost is my sense of self at a time when very little is making sense at all. My reality has succumbed to the total chaos that rages all around me.
I am bummed that I don’t seem to be able to handle any of it. Mindfulness? Meditation? Forget it. Chaos rules my mind. I just want to sleep until I can wake to a better reality. And so I sleep. A lot.
I used to be able to gird my loins and launch myself into some creative craft project that would, at least, surround me with a brain buffer. I used to be able to take that chaos and re-purpose it into pretty decent poetry.
Is it so terribly hard now because I am old? Because I have used up my finite resources? I feel totally depleted. I don’t know who I am or why I am.
My late once-husband, who tended to be single-minded, once told me that he wonders what is at my “core”; he saw me like an onion. The layers get pealed back and there’s nothing at the core. And this is how I saw him.
.House cactus. You stand firm and fundamental in your solitary nesting place apart from your leafing, budding sill-mates. You remind me of someone I know
So, I am an onion. Each layer is a period of my life that I created and lived and survived. My layers are what I am. Does that mean I have nothing at the core? Nothing solid, impermeable? Does it matter?
Maybe it does, if I find myself adrift in a chaos that is being absorbed by whatever is left of who I am. Do I even have another layer in me, or is that all there is?