Category Archives: depression

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.

Like Lazarus

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Like Lazarus, this personal blog periodically comes back to life. This time in the midst of major world crises — war and death, planetary destruction, political insanity.

I am feeling lost in the middle of all of this — tired, unconnected, useless.  The tiredness is overwhelming.  Nothing inspires me.  So I sit down to write to try to tap into that place deep within me where there must still be signs of life.  It takes an effort just to do that much.

I  continue to struggle with the inability to fall asleep.  A combination of Abilify and Melatonin seems to have begun working.  Time will tell.  The Abilify was prescribed (added to my depressive meds) because last year I was diagnosed with Bipolar 2, which means, while I don’t get manic, I do have periods of significant mood swings that affect my life.

But I am still tired during the day, and nothing seems to pique my interest — no crafts, no projects…  I only occasionally leave the house.  It doesn’t help that the magnificent maple tree outside my window is intently shedding dry brown leaves instead of turning its usual Autumn color palette. The brittle leaves are piling up in inches-thick mounds.

Notice that none of my neighbors have leaves in their yards.  It must annoy them to have the breezes send some of ours onto their well-manicured lawns.  My son-in-law usually mows the fallen leaves into mulch as the season progresses, but this pile-up is overwhelming.  When he has time, he will figure out what to do with them.

I have plenty of time, but I can’t seem to figure out what I want to do.  I check the calendar my senior center and circle programs to consider.  But all I do is consider.

The one thing that keeps me going is my relationship with the man to whom Match.com accidentally sent me, even though I canceled my subscription years ago.  The same age as I am, and a fellow Pisces, he amazes me with his perseverance and positive attitude. We both struggle with health issues (I had my right knee replaced last June), and we live an hour’s drive apart. So getting together can be a challenge, but we manage.  And having lunch every other Friday with him and his sister is also an incentive.

I saw something on the senior center page that I am considering.  They are looking for town residents to help “build an age-friendly community….help shape the future of an Age and Dementia Friendly East Longmeadow”.  Well, I sure know about age and dementia, and I sure would like to become part of some community.

Meanwhile, the poor Palistinian people are being annihilated.  Where is there justice in all of this? Gaza is about the size of Philadelphia; Israel in a little smaller than Massachusetts, but has a strong military.  Although Israel is fighting Hamas, it is killing  ordinary Palistinians who  have nothing to do with Hamas. Looks like David and Goliath, and Goliath is going to win. Why isn’t neighboring Egypt offering to take Palistinian refugees, who are caught in a cage with no way out?  Gaza and the innocent people in it are fodder. And America is backing Goliath.  At least, why aren’t we working with Egypt to rescue the women and children of Gaza?

 

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.

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.

 

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.

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.