The F word

 Posted by on April 19, 2012 at 6:00 am
Apr 192012

Enough already with the critics and detractors. I haven’t been doing a very good job lately of keeping current with documenting my personal story, which was and is one of the primary purposes of this blog.

Despite the gruesome pictures from an earlier post, I am not currently experiencing any horribly disfiguring outbreaks, lumps or other obvious manifestations of poor health. The skin on my left leg has healed nicely and is completely intact, with no breaks, scabs or sores, for the first time in more than a year. The mystery lump on the right side of my face, under my jaw, has shrunk considerably, though I can still detect it. My smile is still crooked, due to what I assume is now permanent facial nerve damage resulting from Bell’s palsy. I also have a few persistent skin sores on my shoulders and back that are resisting healing.

I can fall asleep anywhere, anytime.

Other than these minor nuisances, my body seems fine, for the most part, and people who have known me for some time, assure me that I “look good”. What is not so obvious is the extreme fatigue (the F-word), weakness and tiredness I have been experiencing for six months or so, and an excessive need for sleep.

When I try to understand for myself, or describe this aspect of my health to others, I can’t help but think of my mom, as I remember her, during my pre-teen and early teenage years. Incapacitating fatigue was a familiar companion for her too, for good reason.

One of the images burned into my memory so vividly that I can still recall it, is the day my dad brought my mom home from the “mental health hospital”, where she had been treated for severe depression, probably in the late 1960s. I was too young to remember what led up to her treatment, but I’m pretty sure it was the stress of being the mother of six kids, struggling to make ends meet, and trying to keep things together after my dad had been seriously injured in a car accident.

The inpatient facility was in Hays, Kansas, 100 miles away from Colby. There were a few times when some of us kids were allowed to make the one and a half hour ride to Hays with my dad, but we were not allowed to see Momma for some reason. Some other adult tagged along to distract us at the local shopping mall, or putt-putt golf course, while Poppa visited Momma in the hospital. I’m not even sure why we were there.

The story—as I recall it, anyway—was that the doctors tried to enforce an admissions agreement that Mom would remain under their care, and control, until they chose to release her. After seeing the results of their treatment, my dad—a former WWII Air Force Lieutenant—had a different plan of action.

Following weeks of treatment that ultimately included several rounds of electroshock therapy, Dad drove to Hays alone, and returned to our farm home with a woman I barely recognized. Mom was white as a ghost. She reminded me of what my young mind imagined a body might look like if it had been hung up in the local meat locker plant at near-zero temperatures. There was no flash of recognition in her face as she walked in the back door to the house, or even eye contact, for that matter. Dad led her, as she shuffled zombie-like, to their bedroom, and for whatever reason, I have blocked out any further recollection of the next few months or years. I don’t think I saw much of Mom, though, as she confined herself to the safe space of her bedroom.

The Blakesley Hotel in Colby, Kansas

A couple of years later, when I was 14 or 15, the exciting news was that my family was going to move to town, where my parents were to start a new business adventure. Dad sold his interest in the family farming partnership to his brothers, and bought a rather quaint and unique old 24-room hotel near downtown Colby. I wasn’t even aware of the disharmony in the larger Barnett family; I was just living a dream-come-true by getting off of that boring farm and becoming a “townie”. No more riding a bus to school, or three-mile bicycle rides each way, just to go swimming in the community pool.

This move to town proved to be more than I had hoped for. I had never traveled further than Denver, about four hours away, but living in a hotel provided opportunities to meet people from all over the world, as they passed through the lobby and registration area of this small inn, far from the Interstate highway in this podunk little town in the middle of the Kansas plains.

There was the Persian rug salesman from Iran. There was  the couple from Australia, who lived with us for months, after one of them had a heart attack during their around-the-world retirement tour. There was the closeted male homosexual trucker who took me out for a meal, and ended up having me for dessert later that night in one of the hotel rooms. My first experience with live porn was watching a young couple fuck by peering through the keyhole of their room. There was always someone new coming through the front door.

Momma at lunch May 26, 2010

But where was Mom? I rarely saw her, other than at the dinner table. The first several years, my parents lived in one of the small hotel rooms upstairs, over the office. In fact, it was the same room they spent part of their honeymoon in, or so the story went. My mom still took a lot of pills for her depression and mental illness. Pills to wake up; pills to help her fall back to sleep. She would come downstairs only long enough to eat a meal, and then went back upstairs to bed. With very few exceptions, she seemed to be incapable of functioning beyond those two basic activities: eating and sleeping. She gained a lot of weight and has struggled with obesity ever since.

That is the kind fatigue I have been experiencing lately. I find myself going back to bed, after being up only a few hours, even though I had far more than 8 hours of solid sleep the previous night. I can fall asleep within minutes, just about anytime, regardless of how much sleep I’ve had. I can’t blame the pills, because I no longer take any psychotropics.

This level of fatigue is not completely new to me and there have been other times in my life when I have spent a lot of time sleeping. Several years ago I was prescribed Provigil, a drug used to treat narcolepsy, to help me stay awake. The drug worked. I didn’t sleep, but it was not unlike being on speed, which meant the payback was hell. Like so many pharmaceutical solutions, it was not sustainable, and probably caused other problems.

My first recollection of severe fatigue was when I had mononucleosis as a teenager; the second was recovering from Hep B in my early 20s, both of which occurred while I was still HIV-negative. There have been other bouts of severe fatigue that have lasted for months, maybe even more than a year. Those periods have always ended, and I expect and hope that this bout will pass too, and the sooner the better.

When a person spends so much time in bed, sleeping, there comes a point of being willing to do anything to try to shake it off. Yesterday I mowed the yard. Today I feel like I plowed 40 acres instead. I need to hang a small piece of sheetrock on a bathroom ceiling, but the muscles in my arms refuse to lift it up over my head. Six months ago I was not only hanging sheetrock, but loading it into and out of my pickup by myself.

I relate to those people who have Chronic Fatigue Syndrome. That’s what this sounds like to me, but because I’m poz, it has to be due to the HI virus instead. The other explanation might be that the fatigue is a symptom of depression, and I know that. Like my mom, I’ve lived with episodic depression all of my life, and I’ve grown accustomed to the effect of its own unique ebb and flow in my life.

While I don’t doubt that I may be depressed, it doesn’t feel like the acute depression I’ve known it in the past. I also ask myself: which came first? Am I fatigued because I’m depressed, or am I depressed because I’m tired of being so damned tired all the time?

My energy and strength were both very high last summer; so much so that I was spending 12+ hour days renovating a house. Lifting, carrying, hauling, moving. One of the things I was doing differently that I am aware of is high dose intravenous vitamin C, which seemed to improve both my energy and my mood. I’ve begun doing IVC infusions again recently, though I cannot afford to do it as frequently as I might like.

The other correlation with the latest bout of fatigue that is pretty obvious is a sudden decline in CD4%, starting last October, though that correlation doesn’t explain previous bouts of fatigue. Still, I haven’t given up on reversing the decline in that marker, without resorting to ARVs, and I’ll be writing more about those efforts in in a future post.

There is one other thing that you should know about Mom, and the impact she has had on my own life. After many years of taking fistfuls of pills for depression and mental illness, one day more than 40 years ago she flushed them all down the toilet and put her faith in God for her recovery from depression. It worked for her. That I credit her own personal strong will more than divine intervention is irrelevant (and irreverent). The fact is, my mom changed once she quit all the psychotropic drugs she was on.

She became active again, and practically ran the hotel for years. Her and dad tore down an old Army chapel and hauled the used lumber out to Colorado to built a beautiful, solar heated home in the foothills north of Colorado Springs.

There is no question in my mind that witnessing this powerful act by my drugged mom as a teen probably influenced my own decision to flush the ARVs first, and then the two dozen other pharmaceutical drugs I was taking in 2006.

Mom turns 88 next month and may—in many ways—be in better health than she’s been in for a decade or two. She now takes only a very few drugs for things like thyroid deficiency, and she wears a narcotic patch to help her cope with sciatic nerve pain. Her weight fluctuates, and she rarely leaves her apartment, where she lives alone, with only the most basic assistance with her daily needs and housekeeping. Most importantly, she is today one of the most contented people I know.

Oh, and she still sleeps. A lot.


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  3 Responses to “The F word”


    Jonathan, you write with such emotion, clarity and humour. It is a gift from you to us.


    Hey Jonathan,
    Great post. The old hotel reminds me of my favorite author, John Irving and The Hotel New Hampshire!
    Glad your mom is doing well and hopefully you’ll being doing well too.

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