Author Archives: Elaine

No Help in Sight

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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’s All Going to Hell

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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.

Hah. Another all nighter!

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After my all-nighter the other day, I just stayed up all the next day, fell asleep in my chair for a couple of hours in the afternoon. After taking some MMJ, I fell asleep about 4 am and slept for 15 hours. It doesn’t help that I had great dreams, filled with people and things to do. No wonder I don’t want to wake up.

It’s now about 2 am. I’m losing track of what day and night it is. I am either going crazy or I am dying. I don’t know which I prefer, since I have no reason to stay alert and alive, anyway.

I need a reason. I think I found one at the Thomas O’Connor Animal Shelter. A sweet looking 8 year old couch potato cat. I will make an effort to make that happen.

I also have to get the MMJ under some kind of control. If I take too little, I still don’t fall asleep. If I take to much, I don’t want to get out of bed and stay there all day. That, alone is going to drive me crazy.

Tomorrow, I will call the shelter. I have to find a reason to stay sane. And alive.

And I will look of a neuropsychologist who takes my insurance and does telehealth. It can’t get any worse. If it does, I’ll just refuse to ever get out of bed. It’s not worth it.

It’s going to be an all-nighter.

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It’s 3:30 am. By now I have usually taken my Remeron and also 35 mg of marijuana and am on the verge of sleep. Last night I did that, fell asleep about 4:30 am, and slept for 12 hours. Which means I got up in time for dinner. Their dinner was my breakfast. Enchiladas. That’s what I had for breakfast.

The truth is, I never know when I’m going to fall asleep even though I go through the same routine every night. I take my Remeron at 11:30 pm and take my marijuana edibles (THC/CBN) between 12 and 1 am, with the lights down low. I get ready for bed at 2 am and am in bed by 3 am.

But that doesn’t mean I will necessarily fall asleep right away. There are nights (days) I don’t fall asleep until 6 or 7 am. There are some mornings when I’m still awake while my son-in-law is up getting ready for work.

For a while, it was “asleep by 3:30 am and up by 12:30 pm.” And I could live with that. But as time goes on, my sleep schedule gets more and erratic, and I don’t know how I’m going to be able live with that.

And I am having a hard time productively using those night hours when I am awake. I guess, psychologically, for me, night time has always been for sleep. Or dancing. It’s like I’m on my old dancing schedule: I used to go out a 11 pm, dance until 2 am, and be asleep by 3 am. Sometimes, now, I actually put on music during those dark hours and dance. But it’s not the same. Nothing is the same. I am caught in this limbo of a non-life.

Since I have an overwhelming backlog of yarn, I started to crochet a sweater from what seemed like a simple pattern. Made continuously from the top, down. Half double crochet all the way, with some increases. What is making me crazy, is that every time I make the indicated increases and then go to check the number of stitches, I get a different number. It’s making me crazy at 3 am. So I ripped it all out and am starting again, and I’m still never getting the number of stitches I’m supposed to have. I’ll try again tomorrow.

Eating on this crazy schedule is also a problem. If I wake up around noon, no problem. I have “brunch.” And then dinner is around 5:30. By 10 pm, I’m hungry, so I have a snack. And around 1 am, I’m hungry again. So, maybe a banana and chocolate almond milk. What I need to do is stock up on some yogurt.

And when should I take my vitamins? If I take them with dinner, will they increase my energy at night so that sleep becomes even more difficult?

My isolation has become toxic. I don’t even see much of my family. We used to at least have dinner together, but the “dog experiment” messed with the old patterns. It was an “experiment” because, while we all loved the dog, who was very smart and was already learning to respond to commands, he was not able to be “cured” of biting. We know he just wanted to play, the way he might with other dogs. Except that he had not been around other dogs to get the message from them that biting them was not OK. It all got very complicated, and he had to be taken back to the Rescue folks.

So, the family will be looking at more middle aged dogs who tend to be couch potatoes. And, while they are looking, they are fencing in the yard, in anticipation of finding a dog that is a better fit for this family.

Meanwhile, here I sit, at 4:14 am, not sure what to do now, except to just stay up for the rest of the night and try to make it through the day.

I binged watched some stuff that is streaming: Evil, Midnight Mass, Chuck, and now I’m watching Why Women Kill. Maybe I’ll just watch more tv.

Maybe I’ll look on Pet Finder and see if I can find an older cat to keep me company. Their mean prissy “don’t touch me” cat can just suck it up. And if they finally find a dog, he will have to suck it up too. My comfort/happiness/ is just as important as theirs.

I just don’t know how I’m going to manage living like this.

Ooops, I did it again.

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With my DSPD, I tend to fall asleep between 3 am and 6 am. Two nights ago, however, I was never able to fall asleep at all. So, I got out of bed at 9 am, took a shower, and sat down at my computer and ordered some Sleepy Time Cheeba Chews from my local medical marijuana dispensary. There are 20 chews for $30. Each piece is a 5.43 mg of a combination of THC and CBN.

I haven’t had any edibles for a while because they are so expensive. At least they are for me. 5 mg is considered one dose. It usually takes me 20 mg to have any effect.

Last night, I didn’t want to take any chances. I had to fall asleep. So I took 30 mg. around 11:30 pm. Got me totally stoned, so that all I could is lie in bed and space out. And I didn’t fall asleep anyway until 3 am.

I’ve done that before, took too much and just had to ride it out. It’s not a bad sensation, but it’s not really what I’m trying to do. I’m trying to fall asleep.

It is now after midnight, so I’ll try taking 3 chewies first, and it that’s not enough, take another one. They take from 1/2 to 1 hour to kick in. In the meanwhile, I’ll get ready for bed and work on a crochet project if my arthritic thumbs can take it. Maybe watch some tv. Or read. When I start getting sleepy, I’ll go to bed.

It’s all trial and error. No one knows how the cannabinols will affect an individual. But hey, I’m a risk taker, right?

Alone, alone, all, all alone

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The title of the post is from The Rime of the Ancient Mariner. It resonates with me these days, mostly because of the COVID pandemic and my choice to limit my contact with the outside world.

Combine that with the dark early morning hours when I am alone because of my DSPD, along with the upheaval in this house as my daughter and grandson focus on training their new dog while trying to accommodate the existing prissy cat, who wants none of it. She doesn’t like me, this cat. Never has, and nothing I try to do changes her mind.

I miss the touch of a living creature. My own old cat died about 8 years ago. It wasn’t a great life for her here; she was confined to my two rooms because she attacked the two other cats that lived in this house at the time, and she refused to develop even a tolerance of them. And they were here first.

I live in a house, but it’s not my house. There is a cat who lives in this house, but she is not my cat. There is a new dog who lives in this house, but he’s not my dog.

I am grateful that my daughter and family welcomed me to live with them as I advance in age. It was my best alternative.

But I miss the soft purring on my shoulder, the silky fur brushing my forehead, the rough tongue licking my cheek.

I miss not being alone.

So, here I am at 2 A.M……

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While I’m waiting for that “sleep switch” to kick in, I’ve been trying to track down other bloggers around my age to see if we can develop into a virtual community of kindred spirits. That’s what I had back in the 2000s, and I miss the virtual camaraderie.

As part of my efforts to lesson my feelings of isolation, I am working with my local senior center to try to put together a weekly Zoom group of older folks who are disabled or are self quarantined. I only go out when I have to — medical appointments or grocery shopping. I would love to make new friends, and these days, Zoom is the way to do it.

I did spend most of my afternoon sending out my poetry in response to several “call for entries.” I have been pretty successful getting my poetry published, but it is three years since I have sent any out. At some point I will add a “Poetry” link to my primary menu.

Beginning next week, I will be part of a Zoom-based poetry group. I just love when synchronicities kick in and I become aware of the ongoing spirals that my life is on. I dreamed of a married couple with whom I was close friends for decades, but then they moved away. I contacted to tell them about the dream, and they put me in touch with the leader of the poetry group. The leader of the poetry group was one of my ex-husband’s college students and my daughter was a flower girl at his wedding. Circles into spirals.

Obviously, I have my depression under control. If only I could do that about my Delayed Sleep Phase Disorder.

Three or four a.m. has become my usual bedtime. Will I ever be awake again during those morning hours when the air smells fresh and the birds are just starting to sing?

It’s Not Insomnia, It’s DSPS

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I don’t have insomnia, I have Delayed Sleep Phase Syndrome.

Over the past decade, I consulted with various sleep specialists, none of whom ever mentioned DSPS as a diagnosis. I finally had to diagnose myself. All of them told me that I, indeed, had a sleep disorder and provided various suggestions, all of which I tried and documented here. The last sleep study I endured, several months ago, required two Ambien to even get me to sleep on their schedule. Then they woke me up after 4 hours (5 am) because I had to leave, and I was barely able to walk out of the lab and find a place to sit and wait for my daughter to pick me up. I have found that few doctors do the investigations necessary to actually find an accurate diagnosis. It has become cookie-cutter medicine. One size fits most.

Three months ago, I had a serious emotional meltdown, which prompted me to find someone to prescribe more effective anti-depressants, since there would be days I would only get out of bed to eat and go to the bathroom. Struggling to change my circadian rhythm — and failing over and over — finally sent me on an internet search to see if my 3 or 4 am to noon or later sleep schedule was something others were experiencing. And they are. Many. All of the world. Almost all just learned to live with it because nothing worked when they tried to change it. One woman who lived on the east coast took a job on the west coast because she figured that would put her bedtime at midnight, and she could live with that. But it didn’t take long for her body to relapse back to a 3 am bedtime, even on the west coast.

This household shuts down around 11 pm each night. That leaves me with a good four hours to find something to do that won’t wake them up. It’s so easy to just sit, watch tv or read, and eat. I wish I could use that time to write poetry.

Anti-depressants, at the potency at which I am now consuming them, dull the sensibilities that I need to be inspired to create poetry. Even my prose becomes drab and spiritless. But now that I have a diagnosis and an actual official name for what I am experiencing, I will try to ease off some of what I began taking to climb out of the Major Depressive Disorder that I fell into because of all of my failed efforts to change my circadian rhythm.

What I wonder is, why now, since most folks with DSPS are adolescents or young adults. I think there’s a connection to the 5 year trauma I lived through taking care of my increasingly demented mother while dealing with the constant harassment and abuse heaped upon me by my brother. During that time I had no set sleep schedule and often had to resort to sleeping pills to get any rest at all. While enduring my recent meltdown, I realized that I really do have PTSD as a result. Knowing is always better than not knowing.

I’m back writing on this blog to fill up some of that time until 3 or 4 am, when my sleep switch activates. That’s really what it feels like. While I feel relaxed and tired during those wee morning hours, there comes a time when I simply fall asleep, as though a switch is flicked. There is nothing I can do to make that happen. When my brain is ready, it shuts off. And then I sleep deeply for 8 or 9 hours and wake up rested.

So, this is my life now, at age 81. It could be worse, and I try to be grateful that I can still see and hear (with help) and drive (but not at night) and I don’t have any serious medical conditions. I can live with that.

Mad as the March Hare

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It’s March. Lost, mindless Oestre chicks. Hares gone Mad with abandon.

March Madness is a crazy time, a neither/nor time. Neither winter nor spring. An in-between time. Neither asleep nor awake.

Mad March targets the tales of those who hide behind the shroud of surety and secrets, takes hold of souls wrapped in remnants of reason, sending them into the mad March wind, freeing the poet’s wonder to unseat what is mean, what is mad, what is best left to the whinings of past seasons gone to seed. Beware the March Hare, unless she is your cup of tea.

A Labyrinth is Not a Maze.

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From here:

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.[1]) 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.