Still Not Sleeping

I thought it was time for an update on my struggle to fix the fact that I can’t/don’t fall asleep until 4 or 5 am.  After that, it’s a restles sleep until 1 or 2 pm, unless I have to drag myself out of bed for an appointment — which is what I had to do on Monday to drive to Boston for an iron infusion.  My daughter and grandson drove me.  I slept in the car back and forth.

Why an iron infusion?  Well, this whole effort has been an education.

For example, the sleep clinics around her are just really “sleep apnea” clinics.  That’s all they do.  They do not deal with any circadian rhythm disorders, which is what I have — which is why I am going to the Sleep Clinic at Beth Israel Deaconess Medical Center in Boston.

The first thing they had me do is take an at-home melatonin saliva test over several hours during the day.  Melatonin levels are supposed to peak between 2 and 4 AM.  My saliva test shows that mine peaks at 3 to 4 PM. Totally upside down. That’s going to be hard to change.  I will be taking a 24 hour melatonin saliva test next week to get an even better profile.  What most folks who take melatonin supplements don’t realize is that you need to take the supplement in relation to when your melatonin levels peak naturally, and there’s no way to know that without testing for it. If your melatonin levels are on the usual schedule, you should take the supplement two hours before bedtime.

The next thing they had me do was go to their infusion center for the iron infusion, because (who knew) ferritin iron levels affect sleep.

They also are insisting that, based on the two sleep studies I had done locally over the past several years, I have apnea and need to get a bipap machine.  I was trying to avoid that, but I’m going to do whatever the say.  They obviously are taking my disorder seriously and are approaching it from all angles.

One of the disturbing side effects of the sleep disorder is a worsening of my reflux because I don’t eat meals at normal mealtimes.  Often, when I finally get up, it’s almost dinner time, and, since my daughter cooks, I wind up eating dinner when my stomach really should be getting breakfast.

Just to add injury to insult, my severely arthitic knees are slowing me down, so I just finished getting a series of hyaluronic acid injections in both knees.  I am getting around much better now, but the relief will not last forever.  I just want to be able to do some gardening, once the weather stabilizes.

My focus on fixing my sleep has pretty much taken over my life; I’m too tired to deal with much more than putting one foot in front of the other,  I have not been able to lift myself from the depression that is worsened by my sleep disorder.  Even the meds aren’t helping.

So, I have signed up to take a three week Ketamine Therapy program.  More on that to come.

Other Aprils (05/15)

Tank tops and shorts
on the first warm day of April,
sprawled on the dorm lawn
in adolescent abandon,
air smelling of
baby oil, iodine,
and sweet spring sweat.

The Eiffel Tower
on the first warm day of April,
arm locked with arm
among the winds of Paris,
air smelling of
wine, tulips
and a lover's sweet caress.

Boy child and ball
on the first warm day of April,
laughter on a learning curve
stumbling in wet grass,
air smelling of
new mud, wet pine,
sweet sun after rain.

Contemplating the dappled shade
on the first warm day of April,
glider swing creaking
its soft lullaby,
air smelling of
lavender, memories,
and sweet seasoned dreams.

The Fragility of Friendships

I first posted this several years ago.  I am now 82.  I came across it while surfing through my old posts, looking for fodder for a new poetry project.  I thought it is worth reposting — with some editing.

Making friends is easier when you are young.  The potentials are all around you — at school, in the neighborhood, your church, your teams.  If you are lucky, some of those friends stay with you throughout your life.  

Such is not necessarily the case as you get older, move, find a new job, get married. If you are lucky, you find new friends wherever you are.  I was lucky for decades after I settled into a job and a community and joined organizations with like minded folks.  For forty plus years, although I lived alone, I was rarely lonely.  I had a group of women friends who gave my life the kinds of rich interactions described by Jane Fonda and Lily Tomlin in this video.  Watching the video stirred up in me profound feelings of loss; I left  all of my friends behind when I moved to a new state to live with my family.  I call it my “assisted living”, and there are great advantages for an 80 year old to live alongside  kind and nurturing offspring.

But as wonderful as family can be, they are not my close friends — the five women (originally six) in the photo strip.  For. 40 years, we shared events, feelings, frustrations, vacations; We all were without partners at the time (although some came and went, pretty much operating on the periphery of our female friendship).

The first photo shows us in our glory days. I was the oldest– in my mid-forties.  The youngest was 10 years my junior.  While our personal histories were different, we shared the common grounds of politics, agnosticism, irreverence toward authority, an appreciation of belly-laughs, and a need to have fun.  We met when I ran a discussion group for single women.

Over the decades, the dynamics of our group changed, as one distanced herself, one (who often chose playing golf to hanging around with us) also fell off our radar.

Eventually there were only three of us to continue the friendship.  And then I moved away.  I still keep in touch with the two I left behind, but it’s not the same.  No longer face-to-face, it’s more difficult to hold onto that feeling of intimate connection.  Now one of the two is battling breast cancer.  I recognize that change is a part of life, but there are some things I wish hadn’t changed.

I left my old life 20 years ago to become my mother’s caregiver.  Ten years ago, I moved to live with family.  Since I moved, I’ve made several efforts to find friends.  I have made one close friend.  Am I spoiled by the intimate and supportive close friendships I had in the past and so I am not as open as I once was?  

Part of the truth is — while I want to have friends and to have some fun — I am tired of the effort it takes to find kindred spirits at this point in my life.  At age 80, I am also physically tired, with aching knees and a non-fixable torn rotator cuff.   I am resorting to trying the Rummikub player group at a local senior center.  It was a game my former group of friends used to get together and play, armed with several bottles of wine.  Lots of fun and laughter.

Is this what it’s like for many single women over 75 who find themselves severed from their former lives?  I would like to start an older women’s discussion group (I was really into the consciousness raising groups of the 1970s).  The challenge is to find some women with the same need. And senior centers around here don’t seem to be a place to find them.

There are so many things we don’t appreciate until we don’t have them any more.  Close friends fall into that category.

Go and watch Tomlin and Fonda.

 

 

It’s All Going to Hell

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.

It’s going to be an all-nighter.

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.

Alone, alone, all, all alone

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……

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

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.

“to sleep, perchance to dream”

Yes, that’s from Shakespeare.

Boy, am I doing a lot of sleeping and dreaming. As a matter of fact, my dreams are a hell of a lot more engaging than my life these days. It gets so I don’t want to get out of bed, because if I stay there and fall back to sleep, I will have more adventurous dreams that are more interesting than any of my daily doings.

My dream world has very specific landscapes that include a section that is some odd representation of the campus where I went to college; a distorted version of the part of the city where I worked for 20 years; a kind of Catskill Mountain vacation hotel where I once attended ballroom dance weekends; and a weird version of an apartment complex where I used to live. I am always trying to get somewhere among those places, but it’s usually a matter of “you can’t there from here”. On those excursions, however, I might meet up with friends, go dancing, play with cats, and come up with a good first line for a poem. But then I wake up, and it’s all gone where dreams go.

No matter how hard I try I can’t reclaim a normal sleep schedule. I often don’t fall asleep until early morning hours, and then I sleep until afternoon. My sleep got messed up more than a decade ago when I was taking care of my demented mother. A search of this blog for “caregiving” or “dementia” will unearth full details.

I have tried to get control of my insomnia (search “insomnia” if you are curious). Medical Marijuana worksto get me to fall asleep, but it is awfully expensive because it takes a double dose to have any effect on me.

There actually have been more than a couple of times when I didn’t get out of bed for more than 24 hours. To be honest, I there are times that I would just as soon not wake up. I kind of identify with a 1999 episode of Ally McBeal, in which “Ally’s favorite teacher from high school is dying, but she has a wonderful dream life which she would like to remain in. Ally decides to get a court order to force the hospital to put her into a coma.”

In my dreams, I have relationships, friends, hugs, interactions, adventures — kind of the opposite of life with Covid-19. (I do live with family, but that’s not the same as hanging out with peers.)

On the Late Show last night, Bill Gates suggested that it might be close to a couple of years before we can settle into some kind of normalcy. How are we all going to keep from going off the deep end before then? Will I even live long enough to see a “new normal.”

In the meanwhile, lacking motivation, energy, and inspiration, I continue to avoid my pile of half-done creative projects that are wasting away in the corner where I piled them months ago. And, also in the meanwhile, I have tracked down a former therapist and have started, again, trying to find my muse, looking for some fuse that will propel me out of this mindless funk.

Do Not Go Gentle

Dylan Thomas wrote the poem that begins “Do not go gentle into that good night.” It’s very easy to fade away into old age, to pretend all is OK, to try not to be a burden, to keep our pain and sadness to ourselves. I guess it’s one thing if you are old and terrifically healthy and still run marathons and such. It’s another if your bones acknowledge the wear of every year — and that is the situation with most of us.

Most younger folks have no idea what they might be in for because we often try to accommodate to their expectations of us. Well, I say that we need to own — and own up — to whatever fragilities we have earned. Let the rest of the world become more aware of what the realities of aging are for most of us. Maybe then they would be more patient when we drive more slowly, or take longer at the check-out lines, or struggle with hearing loss.

I refuse to pretend that I don’t need help getting up and down stairs or getting out of a chair, or opening a jar of pickles. For sure, getting in and out of a car.

My family, with whom I live, understands my struggles because I don’t hide them. My reality is not very gentle: my gait isn’t always steady, my fingers don’t always hold sure, my rest isn’t always enough. And I think that is the reality for most of us, and it is a reality that most of those who are still young will one day face. They might as well see it coming.

So I believe in complaining — in the sense of being honest about what it is like, for most of us, to be old. We should be brutally honest, rather than gentle, about admitting — as Bette Davis supposedly admitted — “Old age is not for sissies.”

This is what I think about as I lay, sleepless at 3 a.m.

But I think of other things too — the projects I would like to do if I could find the energy and focus, for example. I am realizing that most of my life has required a great deal of both, and I have always had to move fast, decide quickly, shift gears while still in full-speed mode. I never had much patience for long-term planning (not a good thing); I’ve never had expectations of perfection (a good thing). But I always had the energy and focus to get done what had to be done.

Now, I spend an awful lot of time sitting in my rocker/recliner, staring into space, not thinking, or planning, or hoping. I spend an awful lot of time awake when I shouldn’t be and sleeping when I should be living.

Life with Covid-19 sucks, and it sucks even more if you are physically feeling your old age, isolated from your peers, and disconnected from outside stimulation. Yes, that’s how I feel, and I have to believe that I am not alone.

There was a time in the history of this weblog that talking to myself, here on these pages, got me through some rough times because there were folks out there eavesdropping with whom I eventually connected in a reaction of mutual support and camaraderie. That connection was the whole purpose of personal blogs, back then.

But it’s a different virtual world, now, and if all I do is talk to myself in these pages, that’s fine. I learn a lot about myself that way, and, although what I learn is not always pleasant, it’s enlightening.

“Too soon old; too late smart”.

Or as my Polish grandmother used to say “starość nie radość”.