Sleep still won’t come.

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Months and years have gone by as I unsuccessfully struggle to find something to help me fall asleep. I have blogged about it various times, the latest here:  I never did the Ketamine Therapy for various reasons.

Over the years, Ihave undertaken several steep studies, the results of which say that I have apenea and need a CPAP.  But, I say to them “Once I manage to get to sleep, I sleep.  I just can’t FALL asleep.  A CPAP will not do anything to help me fall asleep.”

Last night I did an at-home sleep test, which required that I wear a strap around my chest so that a sensor was where my heart is, a tube around my ears and into my nose so that my breathing could be tracked, and a sensor on my finger to gauge my oxygen levels.  Even though I took some of the mariijuana gummies that often help get me sleepy, I was awake all night.  Well, I might have dozed off now and again, but mostly I watched the hands of the clock move through the night.  All of the paraphernelia I had to wear did not encourage sleep.

I know that we are advised not to get medical help off the internet, but the various doctors I have been to can only advise me to use a SAD light in the morning and go and sit before it.  That’s the standard way to fix a Circadian Sleep Disorder.  But I am so tired in the morning that I just can’t get myself out of bed until almost noon.

I have a theory that I can’t seem to get the doctors to consider, so I have been researching the way neurotransmitters have to work in order to support sleep and stave off depression. Severe, chronic stress, sleep deprivaion, and some drugs can cause neurotransmitter depletion. Some researchers believe that insufficient levels of neurotransmetters could lead to feels of sadness, depression, and sleep problems. One of the therapies that specialists use is Amino Acid Therapy, which provides the specific nutrients that the body needs to built its own neurotranmitters and rebalance the brain. I have been taking supplements, but apparently they are not enough.

Without an amino acid infusion for neurotransmitter balancing, it’s not unusual for patients to deal with an absence of dopamine or GABA, which means that they have difficult time resting, relaxing, and sleeping. Most importantly, neurotransmitter balancing reduces stress. With these natural chemicals, patients return to the point of equilibrium and feel more in control of themselves.

There are other theories that I am researching, including one that involves the brain producing an enzyme when under severe stress that diminishes the effectiveness of the “happy” hormones that the neurotransmitters send out.

My Circadian Sleep Disorder began during the five traumatic years I spent caregiving my mother while we lived with my brother in his house.  I slept when she slept, forced myself to stay awake when she was, and had to survive abuse from my brother.  When I finally moved out into my daughter’s house, I spent two years healing the best I good, but my sleep never went back to anything near normal.

I have always been a night person, but I still was able to fall asleep on a dime.  Not any more.

My plan is to discuss all of this when my doctor calls me with the results of the sleep test.  A Neuropsychiatrist is the specialist who can test for neurotransmitter functioning and prescribe a treatment.  There is one locally, and my goal is to get an appointment with her.

I desperately need to knit up my raveled sleave of care.

 

It’s a different Christmas

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Everything changes.  I know that.  My extended childhood family celebrated with an overwhelming calender of Polish traditions.  (See the poem at the end of this post: https://www.kalilily.net/2019/12/24/its-just-another-christmas-eve/)

I don’t really even celebrate “Christmas”.  I”m more of a Solstice honorer these days.

But it is Christmas, and I am going to send my estrranged brother an email and wish him the best.

The last time I tried to do that for his birthday, it didn’t turn out well.  Wish me luck.

 

Getting Back in the Personal Blog Saddle

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More than 20 years ago, my son, Bix (who is autistic but didn’t know it back then) got me into blogging.  The personal connections that I made back then helped to get me through some rough caregiving years.  We all posted every day, whatever was on our minds at the moment — politics, culture, health, family, mutual support, cats. We commented on each other’s posts and kept conversations going. We were a real community; we got to know each other pretty well.  Some of us even found a way to meet in person, but even those of us who never did, still developed real friendships.

But, times change, priorities change, culture changes. Life happens.

My last post pretty much explains why I have been otherwise occupied.  I am on my last great adventure — the adult love affair of my life.  At 82.  It has it’s challenges, especially since we live an hour away and each of us lives with our daughters.  But we are figuring it out, together.

Now that we are past the Solstice and into a new year, I’m going to make an effort to post more often.  There are still things I care about, struggles I and others are going through.  Maybe there will be a way to slowly build another blogging community, but even if not, I will again follow the example of my son and get my blogging hat back on and see where it goes.

One of the things that has gotten my brain interested in writing again was a request from my daughter to write my story for my grandson, Lex.  The request actually came as a gift last Christmas from Storyworth.com, which provided a question every day that I could answer, with the idea that it would all be printed into a book at the end.  I opted just to start telling my story (I just finally started), and I have until January 16 to finish it.

My circadian sleep disorder is still not under control.   Medical marijuana usually helps.  I manage it the best I can.

And so it goes.

 

 

We are Pisces. We are water. We flow.

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There is much I need to document here about what is going on with the Delayed Sleep Phase Syndrome that is wrecking my life, physically and psychologically. No one has helped me find a fix, but I am still working on it.  I will get to that at some point.

What is making it all bearable (as a result of a very recent synchronicity) is a man I met unexpectedly because of some kind of glitch with match.com.  Both of us had been members in the past but are no longer.

Out of boredom and curiosity, I recently joined Zoosk, which is a dating app (I didn’t want to date; just wanted to see what is out there) for educated elders. It must be associated somehow with match.com, because I got an email from match.com telling me that they have a match for me in Longmeadow, which is the next town.  Out of curiosity, I clicked on the link.  Unbeknownst to me, the link took me to a different profile — one that caught my interest because he plays the djembe and is a Buddhist.  So, for the hell of it, I sent him a brief reply, saying I also play the djembe.

Since he is no longer on match.com, he was surprised that his profile was still out there.  Being tech savvy, he somehow managed to find out who I am.  (I never use my regular email or name for stuff like that.)  He sent an email to my regular email address and used my actual name.  He said he wanted to check and see if it is really me or someone trying to mess with him.  He gave me his name and a copy of a document to prove he is who he says he is.  Of course, I Googled him and found him on FaceBook and Linkedin.

Many emails later, discovering that we were born a day apart (same year) and have so much in common it’s spooky, we decided to meet face-to-face, which we did yesterday.  He lives an hour away, not in the next town.

At 82, we both have been presented with a chance to find some kind of intimacy again, a chance to have a best friend as a partner and to share the good things that we are still capable of sharing.

It continues to be mystical and magical and it all takes my mind off my troubles, which of late have included two ambulance rides to the ER with unstoppable blood rushing from my nose and a blood pressure so high it didn’t register.  Sleep deprivation wreaks havoc on the body’s functions.  I am working on getting my blood pressure under control.

At the age of 82, we both have our health issues and complicated histories.  But we are Pisces.  We are Water.  We Flow.

Life.

 

he crushed my soul

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He crushed my soul with his criticisms and accusations.  With his threatening body language and cornering strategies.  The times he chased me, shouting over my sobs, while I tried to close a door between us as he pushed right through, a video camera in my face capturing my tears, my angusih.

He crushed my soul, and so it disappeared. Fled somewhere to lick wounds, heal. It has been lost to me now, for years, although I keep searching, calling.  Did it hide in the safety of the forest outside his closed windows, finding asylum among the wild turkeys and grouse, the qentle deer, the lone tortoise, the wandering bear, the wise owls and crows, and the deep anonymity of night?

Did it follow me to this sacred ground, protected by family and the magic of love and caring?  Is it waiting, now, in the dense forest outside my open window while I search for ways to bring it home?  Does it remember the magic we made together, loosing the spirits of stones and burrowing things, crafting the wonders of chance into worth?

Grounded in Mother Earth, I reach out into the ether, feeling for some sense of soul, lost still, and dreaming of finding its way home.

Still Not Sleeping

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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 they 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 arthritic 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.

Channeling Granny Weatherwax

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The thing about witchcraft,” said Mistress Weatherwax, “is that it’s not like school at all. First you get the test, and then afterward you spend years findin’ out how you passed it. It’s a bit like life in that respect.

A witch ought never to be frightened in the darkest forest … because she should be sure in her soul that the most terrifying thing in the forest was her.

“And sin, young man, is when you treat people like things.”

 “Don’t do anything I wouldn’t do, if you ever find anything I wouldn’t do.”

“Don’t try the paranormal until you know what’s normal.”

“They say a little knowledge is a dangerous thing, but it’s not one half so bad as a lot of ignorance.”

“She knew a cutting, incisive, withering and above all a self-evident answer existed. It was just that, to her extreme annoyance, she couldn’t quite bring it to mind.”

“Only Granny Weatherwax really knew Granny Weatherwax.”

Other Aprils (05/15)

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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.

Out of Focus

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I wote this in 2004, four years into being the full-time, live-in caregiver for my mother, who had severe dementia and the object of the abuse heaped upon me by myi brother. It is a reminder that I have been through writer’s block before.
I think I remember a time when I could focus on one thing at a time — a poem, a person, a pleasure — when the process was as important as the product. I’m trying to remember when the last time was that I felt that focus, that stillpoint. Oddly enough, I think it was was a decade ago when I used to go out on Thursday nights to dance the Hustle for hours on end. I would follow the lead with such total focus that all I was aware of was my blood humming to the rhythm of the bass and my body carving sharp arcs through the smokey air.
I think I used to know that same kind of focus when writing a really good poem, feeling the rhythm come, hearing the hum of swarming words. But that was when I lived alone, with long, quiet moments to feed my focus. That was when I would have hours of down-time at work, alone in my own office, with nothing to do but let myself succumb to the processes of dream timethink what happened is that I got really good at my job — multi-tasking, meeting deadlines, serving many masters. Scheme thinking. Quick thinking. No time to dream, alone, in a corner with a window.

I think what happened is I learned t.o care too much. I think what happened is that I let the world nibble away at my layers so that I lost my deepest secrets.

“The Many Breasted Artemis,” my shrink once noted, as I unloaded my distress at being expected to always be the nurturer, the feeder, the source of unlimited resources, the problem-solver, the responsible one.

I thought that when I retired, I would be able to find, again, that dreamy focus. Instead, it takes me until midnight to finally breathe evenly and deeply, to let go of all of the knowing. It takes me until midnight to finally feel the yearning for deep secrets.

But to have secrets, one has to have a life beyond the giving of care.

I’m waiting for my time to come again, when I will, again, simmer and stir, ladle, at last, into mounds of midnight words, that witch’s brew.

The Fragility of Friendships

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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.