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.

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.

Hah. Another all nighter!

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.

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.

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.