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.

Channeling Granny Weatherwax

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)

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

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

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.

 

 

I think I know what Karl Jung would say.

I sleep a lot and I dream a lot.  The other day I got my second Shingles shot, and this time I had a reaction.  Not only was my arm really sore, I developed a low grade temperature. I was toally wiped out. As usual, though, I didn’t fall asleep until 2:30 am.  And I had one of those dreams from which I just don’t want to wake up.  This is how it went:

I am at some some sort of State Fair kind of place, and it’s time for me to go home. As I leave, I pick up a small bunch of flowers and stick them in my pants pocket. My pants have lots of pockets. I plan to give the flowers to the man I recently met. My other pockets have money in them, both coins and paper.

I have to get on a bus to get back home. Crowds are crowding into the waiting buses, but I am having a hard time finding the bus I am supposed to get on. I am looking for a bus that will take me to Albany NY, where I used to live. I keep asking people what bus I should get on and I keep getting different answers. I finally get on a bus that is very crowded. I keep asking if this is the bus I should be on and saying where I want to go. Everyone seems to be planning to get off at different places. It is hot and crowded and noisy. I feel I am not being helped because I am an old lady. So I start doing a Mrs. Maisel act – shouting funny things at various people and using “fuck” a lot, like Mrs. Maisel. People start paying attention to me and laughing and relaxing. At the same time, I keep trying to call my ex-husband to tell him I will be late, but my phone isn’t working. So I ask if there’s anyone who can help me figure out what I did to screw up my phone. A black “homie” guy says he can help me, so I give him my phone. It becomes obvious that he is not going to do anything or give it back. So I kiss him on the lips and lick his cheek, and his other homies laugh and tell him to give me back my phone, so he does.

As I do my schtick, I say I am 85 five years old and make a big deal out of it because I don’t look that old. One girl on the bus asks if she could see my driver’s license, so I give it to her and she lets everyone know that I am only 82 years old. She says she is a college reporter and she would like to do a story on me after we all get home. I say OK.

Little by little people keep leaving the bus, until there are only a few of us left who will be going in my direction. We get off the bus at a road that has appeared in my dreams before. I realize that I have to cross that road to catch the bus going the other way. I also realize that the flowers I had stuffed into my pocket were all dried up and crumbing, so I throw them away.

Finally the bus comes and some of us get on. When I go to pay the $1 fair, I keep trying to fish out the quarters I have in my pocket, and at the same time, the paper money keeps falling out. The guy behind me helps me fish out the quarters and hands me the money that had fallen out. As the bus continues on, I see a roadside store that I had been to in another of my dreams. The landscapes I am seeing go by are ones familiar to me from past dreams.

Then I am at my apartment and I am excited because I am about to see the man I got the flowers for. My deceased cat, Calli, is waiting for me but she has become feral, and won’t go inside. So I put cat food and water out for her outside the patio door. The man lives in an apartment across a park from mine, so I go to him.

We kiss and he holds me and I feel wonderful. He laughs when I tell him about my adventure.

Each time I get up, I return to the dream. There were more interactions with others on the bus, but can’t remember the specifics. I wake up hot and sweaty because I had turned the heat on at one point when I got up to go to the bathroom. I have been in bed for 12 hours, from 2:30 am to 2:30 pm.  I could have gone back to my sleeping and dreaming, but I figured 12 hours in bed was more than enough.  Maybe I can find my way back there  tonight.

 

The Power of Persistence

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.

Getting Nowhere, Fast

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).

 

No Help in Sight

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

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.