Category Archives: Major Depressive Disorder

The struggle to be heard.

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To be “heard” is to be visible, to be acknowledged as valued and appreciated.

Today is the 55th birthday of my incredibly articulate late-diagnosed autistic son.  Today he posted about marking the completion of his having to date traveled 32,120,000,000 miles around the sun.

His writing is thoughtful, moving, honest. But between his autism and what looks like is going to be diagnosed as a bad case of Chronic Fatigue Syndrome, the only place he can hope to be heard is over the internet. He really needs to write his autobiography, but that’s a challenge I don’t think he can find the “spoons” to master.
He  ends his post with this final poignant statement:

Thirty-two trillion miles is a long way to travel, and that doesn’t even include the miles accounted for by Earth’s rotation, let alone the rotation of our solar system around the galactic focus. That’s a lot of mileage I’ll be accruing even as my autistic and myalgic fatigue increasingly keeps me confined within a one-mile radius here in downtown St. Johns.

The passage of every mile, be it on foot or on orbit, subtracts a portion of life. I’ve already traveled a considerable portion of the way toward my death, and now I’m closing in on the reality that I mostly will move only as the planet carries me around the sun. So, then, maybe all of this is why I’m here, once again writing into the great and yawning abyss of the web: as my real geographies contract, perhaps I’m reaching—flailing, really—toward those ethereal, untouchable geographies.

For now, anyway. Until I quit on it again, or everything else up and quits on me. Which, at some point, it will, and must. As it will, and must,  for everyone.

So it goes.

Here we go again.

Happy Birthday, Bix. I wish I had the magic that could take away your pain –existential and otherwise.

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My son Bix tells me that blogs are back.  This blog never really went away; I just did.

The odd combination depression and the peculiarities of my personality negated any effort at creativity.  I just wanted to sleep; nothing caught my fancy.  But ending my brief (1 1/2 years) relationship and getting on more effective meds did the trick.  (I think that he ultimately hoped for companionship, while I hoped only for a final romantic adventure.  We were both disappointed).

But now blogging is back, my son says.  And because mine has never gone away, many of  my posts still get read when somebody googles a topic about which I posted.  For example, my son recently posted this:

Tfw you’re googling for what was in the Greedy Bastard at Mad Dog in the Fog and on the first page of results is a blog post by my mom referencing one of my own where I talk about heading down to an antiwar protest that I have no memory of attending.

That referenced post of mine was from October 2002.  Yup.  Once something can be caught by google, it’s there for eternity. It’s one way of getting a feeling of leaving some kind of legacy, I guess.

It’s almost October, and if I look back in this blog, I find that October is when I come to life creatively.  I am looking back on my life in general quite a bit these days — finally recognizing the times that I was my own worst enemy.

There is much to write about these days.  I wish it were 20 years ago and I could be back with those folks in the old blogging community and get into those ongoing conversations we would have about life, the universe, and everything.

But that’s OK.  I’ll just continue here anyway, because when I talk to myself, I tell the truth.

 

Dooce is Dead

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“Dooce” was the blogger name of Heather Armstrong.

The pioneering mommy blogger Heather Armstrong, who laid bare her struggles as a parent and her battles with depression and alcoholism on her site Dooce.com and on social media, has died at 47.

As a personal blogger back in the early blogging days, Dooce inspired and pushed the envelope for many of us trying to establish our own authentic voices on the internet.  As she succeeded in writing herself into existence, she paved the way for personal bloggers, like me, to use that public format as a way to navigate our ways through tumultuous personal times because we did not have to feel isolated and unheard.

For me, it included years of being an abused caregiver; the five days I sat with my mother while she died;  my debilitating struggle with not being about to fall asleep; my experiments with medical marijuana; and my ultimate sleep solution with an unusual pharmaceutical.

Like Dooce, I suffered from depression, but unlike her, I have been able to control mine, and, in association with that, to finally fix my sleep problem.  For years, I tried to convince doctors that my inability  to fall asleep was a matter of inefficient brain chemistry.  While my depression meds triggered certain neurotransmitters that produce the chemicals that supported mood, they did not deal with dopamine.  After doing extensive reading on the subject, I was convinced that my brain’s inability to trigger dopamine was behind both my mood swings and my sleep deprivation.  A psychiatrist finally prescribed Abilify (which triggers dopamine) and my problems were solved.

I think of what Dooce endured as she struggled to find a solution to her depression.  Her depression grew worse, leading her to enroll in a clinical trial at the University of Utah’s Neuropsychiatric Institute. She was put in a chemically induced coma for 15 minutes at a time for 10 sessions.

She finally committed suicide.  What if her struggle could have been lessened if she just were given the blend of meds that would have balanced her brain chemistry?  Why isn’t there  more research being done to produce the pharmaceuticals that will help brain neurotransmitters produce and maintain the necessary balance of the chemicals necessary for mood balance: dopamine, serotonin, oxytocin and endorphins?  One big motherfucker happy pill that balances imbalanced brain chemistry.

Dooce committed suicide because life’s pain was more than she could handle.

Last night on the series “911: Lone Star”, a character with the last stages of Huntington’s Disease commits suicide, using what looks like helium inhalation. I happen to believe in the right of an individual in terminal stages of an illness to choose to end their life on their own terms.

I also believe that folks should be more comfortable talking about death and dying. ,  Back in 2010, there was a movement to set up “Death Cafes”.

At a Death Cafe people, often strangers, gather to eat cake, drink tea and discuss death. A Death Cafe is a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counselling session.

I, for one, would love to  have access to a Death Cafe, and even suggested that a local senior center hold one.  The idea was never even considered.

At  age 83, I think about dying, since it could happen any day, now.  I also think about living, and doing what I can to make what life I have left continue to be a hoot.  But I would love to meet with kindred folks who, like me, want to be emotionally ready when the time comes, not matter how it comes.

Dooce is dead, too young, too fraught with pain.  There had to have been a better way for her.  There has to be a better way for all of us.

I’m Dreaming of Dead People

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The one possible side-effect of taking Abilify that I have developed is having disturbing dreams.  I dream every night, and, except for occasional nights when I dream of still-living people — like work colleagues and former friends — my dreams have been filled with people in my life who are dead:  my parents, my ex-husband, my cousin Lorraine, one of my former boyfriends, my former boss, and even a guy I dated my freshman year in college who, I heard, died years later on an operating table. I was surprised that I even remembered him, as well as his name.

My dreams are fraught with frustration, as I navigate Escher-like landscapes in which I rarely find a way to get where I want to go.  The landscapes, based vaguely on places I have worked, lived, and danced, and are dark and distorted.  The people I encounter (not just the dead ones) make me feel uneasy, as though I know they don’t really like me.

I am always trying to get someplace, and I always can’t find where I parked my car. My efforts are thwarted by people and circumstances over which I have no control.

When I first started taking Abililfy, I had actual nightmares in which I was afraid for my life.  I would wind up forcing myself to wake up, and then I would lie there trying to figure out from where it was all coming.

There was a time, before I developed (and solved) a Circadian Rhythm problem, that I always had vivid dreams filled with color and sound and engaging adventures.   I still dream in color, and often hear sounds, including conversations, the actual words I can’t remember after I awake. It feels like I’m living in some alternate dystopian reality.  It is all too  real and unnerving.

I hope other dreams will come — sweet dreams the realities of which are comforting rather than disturbing.  For now, I will continue to try to figure out why I am always lost and searching and why there there are all of these dead people complicating my dream life.

I am still here.

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I am still here because I have a “mediocre autistic” superbly articulate blogger son who got me into all of this more than two decades ago and still continues to remind me why we bloggers blog.  “Because we can’t NOT.”

Most of my recent posts have been about my struggle with a Circadian Rhythm Disorder wherein I could not fall asleep — usually not until 3 or 4 am, and sometimes not at all for 24 or more hours. This went on for years, despite my suggesting to my doctors (after much reading and research) that my problem is probably a matter of brain chemistry — the lessening of the functions of the neurotransmitters responsible for the hormones that regulate mood and sleep (and many other psychological responses as well).

I tried  taking amino acid supplements, which are the precursors to the production of those “happy” hormones.  I also tried various herbal supplements that supposedly help with bringing on sleepiness.  All to no avail.

All it took was one psychiatrist and a prescription for Abilify (added to my current anti-depressive) to solve the problem.  Within a week, I was back to a “normal” sleep pattern, no longer depressed, and full of creative energy.  The answer was dopamine; that’s what my neurotransmitters were failing to transmit.

While am not a big supporter of Big Pharma, and while I hate the ads on tv for depression medication, the hard truth is that Abilify is working for me.  It’s almost miraculous.

It makes me angry to know that my problem could have been solved years ago, had any of my doctors thought beyond the typical environmental suggestions for fixing sleep problems.

Finding a psychiatrist was depressingly unsuccessful until I stumbled upon Talkiatry.  I used Linkedin and a Google search to check out the psychiatrist to whom they assigned me and found that he had impressive credentials.  He spent more than on hour with me on on a telehealth visit and discussed with me all I had been through.

I agreed to try Abilify.  And, now, here I am.  I continue to have follow-up telehealth visits with him as he checks in on how I am doing.  So far I have no side effects, although I am having frequent very disturbing dreams.  I will discuss that with him during our next virtual visit.

At age 83, I want to enjoy this last phase of my life, despite the typical aches and pains of aging.  Now I can.  Drugs.  Sometimes you just have to.

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.

The Power of Persistence

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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

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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).

 

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.