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Category Archives: Medical research

When I’m In the Hole Every Direction Is Uphill

I am writing this primarily for the benefit of other sufferers so that they know that they are not alone.

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Well – it’s one of those days, and has been for the past three days now. A storm front has been pushing in from the West, and it has been taking its sweet time. I feel as if I’m walking around with a lead blanket thrown over me, and even though the sun is bright, I cannot enjoy it, because it makes my eyes sting, and suppresses me as if I was having the lamp of an interrogator shown squarely into my face.

This is what I refer to as being in the Hole. Yeah, I know, Alice In Chains had a song by the same name. But this hole is not a drug-of-choice induced hell. I didn’t elect to go into this hole, I was pushed by an unknown force. I was dragged kicking and screaming into it.

But if you’re one of us, I’m not telling you anything that you don’t already know about. I’m just here to tell you that I understand, and to reassure you that you are not mad. The Hole is real.

The problem with it, is that I never know where the edge is until I get there, and I never know how far I’m going to go in.

For the past three days, I’ve started out with the ‘Okay, I can do this’ attitude. But right in the middle of it, I slide directly down the dreaded ‘Okay fuck this’ slope of desperation within the span of a minute.

The only recourse is that damned bed. How I hate that freaking bed.

I’ve grown to where I even dread eating, because I know it is going to hit me like a sledgehammer. I like food, and I like to eat, I just hate what it does to me anymore.

This is what makes it so damned hard to plan anything. And we can try to explain it to others, but the usual response – the eye rolling, the sighs, and the ‘I’m tired too, after working all day’ lines – serve no other purpose but to anger, and farther isolate us.

And we begin to worry. Even close family members may become preoccupied with work, or find reasons to leave us alone. As they grow more distant, they do not realise that, when we are having bad days, ignoring and avoiding us makes our depression more difficult to manage.

We begin to wonder if cherished loved ones won’t suddenly abandon us on the days we need them most. We may even begin to fear that those same individuals may one day leave us completely. We have no reason to feel this way, and that, too, angers us.

We all know that no amount of work has ever left us feeling this drained. And we all know that when we wake up in the morning, we aren’t going to feel much better than we did the night before, irrespective how well or long we sleep.

Sometimes we wish we’d never wake up, because this kind of life leaves one very little to look forward to, especially when those who claim to love us push us away with their apathy.

Many days, we are left only to one another, and ofttimes, distance forbids us from sharing thoughts, tears, and the day with one another.

I do not know who many of you are; others, we have consoled one another late into the night on social media platforms. Our faces do not matter. Only our understanding. Because we are the only ones who truly believe one another without reservation.

Our club is not one of pride, and our bond is not one of secret handshakes, but of desperation.

If you are having one of those days, take heart. I go into that hole often. As lonely as it can sometimes feel, you are not alone.

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CFS Worst Case Scenario (Typical Day)

I’m going to write a bit today, not about music, but about this damned affliction that I have mysteriously been strapped with, generally referred to as Chronic Fatigue Syndrome.

I’ve only attempted to relate this disease in one or two other blog entries, but it seems to garner a decent bit of attention when I do, so I’m going to take a stab at it today, primarily because today is one of those days that I almost think that I’d be better off dead, although that may sound a tad harsh.

No, I’m not contemplating suicide. I don’t have the guts to do that to everyone else involved in my life that such an action would inevitably and adversely effect. The stigma surrounding CFS alone is bad enough. The inability, or unwillingness, of the scientific community to get to the root cause of the disease is enough to drive an individual into deep depression, and to withdraw from society.

No fun can be had. No breaks can be taken. Nothing is available that will alleviate the constant dull headache – the constant pressure at the top of my eyeballs and consequential sensitivity to sunlight. Nothing can take away the God-awful feeling of constant sluggishness that I feel from the moment I rise to the time that I fall asleep.

I have most recently described the feeling as one of having a constant hangover, coupled with that of coming down with influenza. I am aware that this may be impossible for those who do not suffer from the affliction to identify with this notion, or even believe that it is possible to feel this way 100 percent of the time, but I can assure the reader that this is the way that it is.

And then, I have to awake and begin the day. The difficulty of having to get through a day, accompanied with these symptoms, cannot be over emphasised. There are things that need to be done around the house, and I have to do them. The smallest tasks are sometimes nearly impossible to surmount, because the symptoms that I have just outlined are only baseline symptoms. Sometimes they are considerably worse, and other days they are marginally better. On the better days, it almost reminds me of how good I used to feel. If one is not careful, this will bring on a bout of depression, and I learned that lesson the hard way, so I must put that out of my mind, and be glad that I’m having a “good” day. It is almost laughable to refer to it as good.

One has to rest several times while washing the dishes. One has to rest after cleaning the cats litter boxes. One has to rest while sweeping and mopping the floor. One has to take breaks while cooking a meal.

Some have asked, why not use a dishwasher? Because washing dishes gives me something to do.

Others have asked why I don’t order out. Because it’s too expensive, and again, cooking gives me something to do.

One inquired, “Why don’t you lose the cats, dude?” Because the cats give purpose to my life. I talk to them, I fuss at them, I cry to them, and I tell them my troubles, and they respond by nuzzling and marking me. Sometimes that in and of itself is annoying, but I tolerate it, because if I were completely alone, I would begin to question the value of my life, and that is best not to ponder.

What it seems that many do not understand, is that as humans, we want things to do. If we begin to strip away ‘doing’ in order to ‘not do’, then our lives reach a point to where we feel useless and unnecessary.

Lacking the ability to do an honest day’s work anymore, one’s life becomes amazingly empty. I used to imagine having nothing but all the time that I required to do nothing but write and record my music. Having reached this point however, has been a mixed blessing, as recording music has become a major task. Singing is a task. I have to pause the process and rest between verses, because singing requires an incredible amount of energy. Either it always did and I didn’t notice because I had a seemingly endless store of it, or it did but it didn’t matter because I had said endless store.

These dishes – the litter boxes – the mopping and the sweeping. These tasks have taken on new meaning in my life in the past nine years, and if you can’t imagine how that must feel… you should consider yourself very fortunate indeed.

A Sample Day In The World Of Chronic Fatigue Syndrome

Successfully dragging myself from the bed at 6:58, I’d gotten dressed. As I sat there resting afterward, I found myself mulling over the discussion that I’d had with five new friends that I had discovered on Twitter the day before.

A lively exchange ensued, an we typed freely as if we’d known one another for years, and in a way – we had. We all suffer through the same relative hell. I can really connect with someone who speaks my language. No one else does.

“I need to get in there to try and start writing while my brain is fresh.” I told myself.

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‘Fresh’ is a relative term these days. I knew that by 11:30 – which in normality, would’ve been my “wide awake and running on all eight cylinders” time – I would be approaching worthlessness. On a good day, I might even be able to stave off ‘The Fog’ until 12:30 with the application of copious amounts of coffee and nicotine via vaping.

Here, one might say, “Oh, I have mornings like that all the time,” or “There are studies that suggest that too much coffee is bad for you,” or “nicotine is a dangerously addictive drug, and may be carcinogenic.”

Well, let me take this opportunity to clear up a few misunderstandings. I’ll take these in the order in which I presented them.

1) No, you don’t have mornings like this. Don’t patronise me because it pisses me off more than you could ever imagine.

In all of my 51 years before contracting CFS, I never ‘had days like that’. Never.

Not even on those ‘mornings after the night before’ when I was in my twenties. After playing music while sweating profusely, expending energy as if there were no tomorrow, drinking tons of beer afterwards, smoking cigarettes, and staying up until 2:00 in the morning.

2) Coffee and Nicotine are what keep me running – no – idling until the effect wears off. You have your drugs, I have mine, and I utilise them for a completely different reason now. My headache is usually anywhere between a dull ache above and behind the eyes, to a really bothersome piece of shit on the crown of my skull. Caffeine keeps it at bay. In my world, that nullifies all of the studies anyone can throw at me. I won’t take aspirin for reasons which I’ll outline later. Nicotine actually provides a bit of sharpness to otherwise dulled cognitive skills. Gives the brain a bit of an edge, albeit a dull one. Vaping removes all of the bad things relative to smoking and leaves you with the single saving grace. Besides, although it may be addictive, so are lots of things that the FDA approves, except that nicotine doesn’t come with a laundry list of side effects.

Besides, I’ve been through the entire health kick, beginning in my thirties. Lived the life. Quit drinking, quit smoking, quit eating at McDonald’s. You get the picture. But a little wasn’t enough, so I kept going. I lost a little bit of fat, began walking. Miles. After a few months, I began weight lifting. Then I bought the Trek 1000 and began the cycling routine I’ve written about before. I was in the best shape I’d ever been in. By God, I’d earned it too.

Until I was three months into my 51st year. Within a two week period, I went from 50 – 70 mile rides to feeling as if I were fighting the gravitational pull of Jupiter.

I had a doctor say, “Well, you are getting older…” Then I outlined the above scenario. No. Not that quickly did I ‘get older’.

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Okay! So I’m dressed and up. First order of the day: Make the freaking coffee. Drink a big glass of water. Then clean out the litter boxes, and fill the water bowls. Sitting down to rest afterward, of course. The activity that I just described ‘exhausts’ me. I inhale deeply, and blow out forcefully as if I’ve just completed a half days work.

Yes, it is embarrassing to admit. What else can one do? I’ve just gotten started, and already I feel the same way I felt when I finally lay down the night before. This is no exaggeration.

Nonetheless, having only begun I get up after a couple of minutes, grab the floor duster and do the kitchen. This is something that requires a serious application of sustained energy. Then sit down to rest. Huffing and puffing.

Repetitive actions are the worst. I used to do building renovation. Carpentry, drywall, painting, laying tile. All of those tasks require repetitive action. Hammering, sanding, sawing, or the constant back and forth motion of brushing or rolling paint onto a surface. Hell, I can’t even knead dough now without giving out, so I can’t enjoy baking bread like I once did. Sometimes preparing a meal takes two entire days.

The CFS affects every part of my life, and completely ruins what was once a great living.

But hey, I’ve got to begin writing, and it is now 7:30. Time’s a’wastin’ as my grandfather liked to say. So I park my ass in front of the computer. I have the screen turned down to perhaps 33% brightness because the disease has also affected my eyesight. Bright sunlight or artificial light makes my eyes burn and hastens the headache. Nobody knows why.

I gather my thoughts and begin typing. This time is crucial, because no one is up yet. It’s Saturday and the others are sleeping in. Which is groovy, because the slightest thing is capable of distracting me. Gone are the days of multi-tasking. I’m lucky to be able to concentrate well enough to do any one thing well.

Paleface is pawing at the water bowl. It is empty. Did I not fill that damn thing up? I stop what I’m doing to inspect. The one that he has chosen to drink from is bone dry. What the hell is wrong with me?

Did I not mention the constant forgetfulness that accompanies CFS? I look back across what I have typed. I haven’t mentioned it. What the hell is wrong with me?

I begin to type again. After two cups of coffee and working for some time, I ‘come to’. I am hunched over not unlike Quasimodo. I feel as if I’ve sat this way for a week. I straighten up and it hurts. I check my phone. Did I hear it alert? Where the hell is my coffee cup? Holy shit. It’s 9:30. I haven’t thought about what to do for dinner. If I don’t get cranking soon, I won’t have dinner done by 6:00 this evening. I’ll feel as if I’ve been beaten with a hose by then, so I have to start now.

And speaking of eating – sooner or later, one must eat. I hate eating these days, because this signals the end of my morning. Food does me the way that Valium used to. It hammers me like one cannot imagine. I have to lie down and sleep for two or three hours after eating, and I’ve tried everything. Eating lighter, different foods, nothing works. I can eat a few graham crackers with peanut butter (crunchy) and have a spoonful of honey. BOOM. The ‘edge’ afforded by the caffeine and nicotine becomes as dull as a rubber knife within fifteen minutes.

After I wake up around 4:00, I never regain the edge that I’d achieved that morning. It’s like running on fumes the rest of the day, until, finally, I will take two aspirin, one Benedryl, and go horizontal at 9:00. I’ll feel marginally better in the morning, but not for long.

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But that doesn’t matter. People are stirring now, and my concentration is shattered. I have to get dinner going.

You guys have a good day. Captain out.

The Mercurochrome Link to White Knuckle Gaming

That does it. I’m suing everybody for everything. Nothing is my fault and I just realised it.

I thought I was over it. The Nintendo 64 had been sitting on the shelf for years, untouched.

Sure, I’d played the 64 with my son when he was a kid. You know, why not? I had the toys, the candy bars, the paregoric, the mind-numbing Loony Tunes. I had the comic books, the Matchbox cars, and the model locomotives. Shouldn’t he have had a chance to enjoy it all, too?

So his mom bought him a Nintendo 64. The games were largely innocuous and cute: Zelda, Mario 64, Rainbow Six, Mohammad Ali Championship Boxing, Madden 98 (nothing to make him want to go out and mutilate anyone like the Black Sabbath, the Judas Priest, and Blue Oyster Cult did that I used to listen to), Aerial Assault, Star Wars… Oh…..and Mario Kart.

I looked at the dust covered gaming console too long. I remembered too much. Suddenly, I was a recovering heroin addict who was having his old drug of choice proffered to him again.

God damn Mario Kart. Images of Peach and Yoshi drifted through my mind. My blood boiled anew. I slowly reached for the device, and my palms were already moist with perspiration.

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When I was a kid, we’d all be outside playing, and sometimes one of us would fall and tear part of our tender little bodies open. It was an occurrence that we all dreaded and that we would try to wish away. One day, I ripped my knee open pretty badly. All of the other kids stopped playing to assess the damage as well, and looked at me solemnly.
“Are you gonna have to go home?” they’d ask.
Another would inquire, “Do ya’ll have Merthiolate or Iodine?”
“No,” I’d answer, “all we have is Mercurochrome.” My response would send a shudder throughout the group that you could feel and see.

Mercurochrome is how I developed my four octave scream. Even today, uttering the word even makes me tingle in a way that is vaguely uncomfortable. It conjures up something dark, evil, and foreboding. Mercurochrome.

Now, any compound which has, as its root words Mercury and Chrome, can’t be too good to smear into an open wound of any organic being. But as a kid, we were all routinely dipped up to the neck in this shit.

The kid who lived across the street from me rocked incessantly and would cry when jets flew overhead.

Another who lived farther up in the neighborhood would suddenly snap and beat other children up. He’s the only twelve year old I ever knew who had the “hundred yard stare.”

Me? I had a little fling with OCD. I hid it most of the time, but I’d give it free run when I was out playing by myself. I say the same word over and over and over and over and over and over and over. I’d hold my breath and then stagger it until I got it all back in time with something that I didn’t understand. I was a slave to ADD all throughout my time in school, although I wasn’t diagnosed until I was in my forties. All of my afflictions came out in the form of art or music or mailbox bashing. I got over the bat wielding, but the effects of the Mercurochrome still make themselves apparent in my music from time to time:

http://www.reverbnation.com/johnnynowhere/song/10524830-equinox

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Or…..when I play Mario Kart.

And before I know it, there I go. I’m hooking up the console…desperately seeking RCA patch cables. I can’t find them after a two hour sweep of the house, and I find myself hunkered over my project bench, soldering cables up in the sweltering heat of the halogen lamp… and I know that it already has a hold on me. By God, I’m giving it to Mario Kart. Next I’m blowing in the cartridge, washing my hands, using alcohol and then talc.. getting ready.. to win. Charlie Sheen is right. It is all about winning, and my son’s ancient Nintendo 64 has shown me the way.

I go white knuckle so fast, and want to kill Toad and that stupid little lizard. As a matter of fact, I get to where I can’t stand my own driver. I’ll crash him into walls and see if he can virtually die if he pounds the wall hard enough. I hate the controller. I want to jerk the game out of my mind by the roots because I know that I’ve blown the lid off of my self-imposed moratorium and am completely re-addicted. I won’t stop until I win every course, curse every driver to hell, or hurl the controller through the television screen in total disgust.

Or until drained, I slowly rise from the couch and turn off the set and awaken from this video induced hypnotism. My God, it’s two thirty in the morning. It seems like it was just eleven a.m.

Telling myself to just unplug the game and put it away, hide it in a closet, or take the evilness to the Goodwill outlet to bait some other poor fool, I go to bed and cry myself to sleep at night.

But the console sits in the floor still. Until the next time that I look at it, and feel that shiver of excitement… and then the uncontrollable rage.

So you see.. none of this. is.. my fault.

I’m suing everybody.

Johnny Nowhere is a songwriter who is currently undergoing therapy.

Chronic Fatigue Syndrome Primer for the Unafflicted

I generally don’t write about my ‘self’ in my blogs. Most of my readers don’t even know who the hell I really am anyway…not that it matters. I mostly stick to the peripheral stuff, that most often being music, and less often the insanity of politics.

Today, however, I want to discuss a physical malady that a lot of people, including my ‘self’, seem to be suffering from, which, in my opinion, is a wholly misunderstood and misrepresented affliction: Chronic Fatigue Syndrome, or CFS (also known as Myalgic Encephalomyelitis in Great Britain and Australia), is a physical affliction which is poorly understood by most medical professionals, family members, defense attorneys, judges, and…well, anyone who doesn’t suffer from it.

Moreover, I’m primarily writing this article in defense of those individuals who are being forced to live with the frustration, the humiliation, and the downright anger that results from having to live with this ‘disease’.

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My beloved Trek 1000 road bike leaned against the wall covered with a light coat of dust. I walked over to it and gently rolled it out from behind the chair where I had begrudgingly rested it years earlier. The tires were deflated. I removed the frame mounted pump, and with effort, re-inflated the tires. To the familiar, gentle clicking of the drive assembly, I wheeled my bicycle outdoors where I washed every part until again it gleamed as I once always kept it.

I stood there afterward for a while holding it steady, looking down the steep drive that I had muscled it up so many times after all of my rides, and began to cry. I knew that I had climbed the drive for the last time, and the reality of my mortality finally overcame me.

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Almost eight years ago, before CFS came a-calling on yours truly, I was a very healthy 50 year old who weighed a strapping 167 pound with a BMI of 12%. I was then an avid road cyclist who regularly took 50 mile rides, and who sometimes would ride another 25 just because I felt like it. I worked eight hour days as a carpenter, or more accurately, a self-employed Jackass-of-all-trades. The point being made here is that I was, and always had been, abundantly energized. I loved physical exertion. I relished sweating. Conquer and overcome, that was my credo.

Then, one November morning, while working at my craft, I observed that I didn’t feel quite ‘myself’. A day or two earlier, I’d noticed that I had a swollen lymph gland in the fold of my upper leg and my lower abdominal area. The client that I’d been working for dropped by, telling me about his morning, and mentioned that he’d just been to get his influenza shot, and that I should take advantage of the deal he’d received.

“I may have already waited until too late,” I replied, “I feel as if I’m already coming down with it.”

“Not to worry,” he assured, “Since you’re about to wrap up here we can start on our new project any time next week you feel like it.”

After completing the job, I went home and prepared for the week of misery. All of the signs of the influenza were there: eye pressure, raised body temperature, dull headache, lethargy, and that uneasy feeling that it usually brings.

Days passed. The flu never came, yet the feeling of impending illness hadn’t left. In addition, I was beginning to feel extremely exhausted. I could hardly vacuum the studio, or clean the ashes from the fireplace without having to sit and rest. Naturally, this was cause for concern, after all, I NEVER got freaking tired.

The next week I was sitting in front of a physician, explaining my symptoms. Copious notes were taken, blood work and x-rays were ordered. All results turned up negative. Next came the MRI, the stress test, another MRI, more blood tests, more this, and more that.

Five weeks later, I felt no better, and still there was no prognosis. Each time I went back to the clinic to get my results, I was prepared for the worst. I knew they were bound to finally find something that was going to be bad, and terminal. Still, nothing.

Eventually, I became sick and tired of being sick and tired. “Piss on it,” I declared. “I’ll train this crap out of me.” After all, that is what I’d always done, just push through it. And with that I donned my riding attire, hauled my rollers out onto the veranda, and pushed my bike outside. I hopped into the saddle and started riding.

After a few short sessions throughout the following days, which left me consumed, I was really irritated, and was intent on knocking this stuff out of me. I was at least going to train for an hour, come hell or high water. I finally did.

That was the longest, most grueling hour of my life. After I’d finished, I virtually fell off of the bike. I actually nearly collapsed. My muscles felt as if they were made of lead, and my muscles were burning badly. My head was pounding. I was gasping for breath.

This left me exasperated; my resting pulse rate was still 52 beats per minute. My blood pressure was 112/60…but I felt like I was 101 years old.

That was the last time that I attempted to ride my bicycle. I was convinced that I was dying.

And I was going through hell trying to explain to doctors and others how I was feeling. I told one, “After staying awake all night, you know how disoriented you feel by noon the next day? That’s how messed up I feel all of the time.”

To another I explained, “When you were a kid, did you wonder how Superman must’ve felt when he was weakened with Kryptonite? Well, now I know.”

To yet another I said, “Imagine waking up with a hangover, only to discover you are coming down with the flu. That’s how I physically feel all of the time.”

They kept telling me that they could find nothing wrong with me. To add insult to injury, I was asked on multiple occasions if I thought that I might be suffering from depression. I was appalled that a self-diagnosis was even suggested.

“Hell no”, I assured one physician, “but I certainly am suffering from a bad case of frustration, in that my condition is being written off as mental illness. I’m suffering from a physical affliction, I tell you.”

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And that was only the beginning. I had to put myself through the humiliation of deciding that I was a broken individual. I had to shatter my self-esteem and start the process of filing for disability. That took over a year.

In the end, I was denied my benefits. It was determined that I wasn’t ‘disabled according to law’. I was furious. It was only much later that I discovered precisely what ‘according to law’ implied.

In every case trial, the defense of Chronic Fatigue Syndrome has been presented, argued, and won by these jackass disability attorneys, as a mental condition. In order to win cases and thereby receive their fees, the attorneys choose the failsafe argument, because they know that an emotional illness cannot be disproven.

The winning argument, revolving around a false premise, sets an precedent, and every other case argument is based on the last determination. Every case takes ‘law’ farther and farther from the truth, but the lie obviously satisfies the Social Security Administration. The disability attorneys that you see on television promising that they’ll win your case are, in effect, authoring these erroneous laws.

Therefore, if you, or anyone you know, suffers from CFS, it is only in their mind, according to law.

It has become a wicked doubled edged sword for me. Bad Karma.

You see, I was once one of those who believed that people only suffered from imagined illnesses, and that all they needed to do was get up off their asses and get a job.

I once wished I could retire and devote all of my time to my craft.

Now however, nature having forced my retirement, stripped me of my energy to carry out the work of my primary occupation, constraining me to draw on my resources in order to make ends meet, and faced with a dreary life of struggling to maintain any semblance of a daily routine…

I swear I’d take a good days work and a long bicycle ride over a million dollars, because all of the money in the world can’t buy back what I want most.