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The Chronic Fatigue Cycle of Life

I’ve felt horrible the last four days.

I’m lucky to have a peanut butter sandwich on days like those. Cooking a full meal is akin to climbing Mount Everest. If it weren’t for boiled eggs, oatmeal, and milk, I’d probably dry up completely.

This morning however, I woke up at 5:00 without a headache. This, in and of itself, already puts me in a more positive frame of mind. After cleaning litter boxes and filling food bowls, I sit to rest, and vape while I quaff two cups of coffee. These are the only two ‘treatments’ that I rely on to get me into ‘work’ mode. Sometimes they make a big difference. I don’t trust doctors or the FDA anymore. How can they prescribe something to treat my condition, when they claim that they don’t even know what the hell has caused it?

I look at the studio equipment that I disassembled over a year ago. I really want to put that thing back into the operational mode, but today there are more pressing matters to attend to. The house has gone to hell over the last four days and I simply have to clean up.

I start the dishwasher, and drag a load of clothes into the laundry room. As that process plays out, I run my big, yet lightweight microfibre floor duster, then draw a big pan of hot water, and add plenty of bleach.

I have a big kitchen, a big den, the laundry room, and a bathroom to mop.

I’ve been in the ‘process’ of tiling the floors for the past two years. A few years back, my son helped me take up all of the carpet, because vacuuming that nonsense was becoming close to impossible for me.

I have three portions of the kitchen in a sort of ‘grid’. I mop one grid, then rest, vape, and drink more coffee while it dries. Then move on to the next portion. I have the entire floor done within an hour. Sufficiently warmed up, I start on the den, which is also where I ‘live’. My bed and everything is in there.

The rhythmic back-and-forth motion of mopping is beginning to make my back ache and tire, but I do my best to ignore the pain.

Half-way through the den, the washer signals that the laundry is ready to go into the dryer, but it really is nice outside today, so I haul the bed linens out to hang up and dry. Sun dried bed sheets are one of the finer things in life.

Another hour later, the den and bathroom floors are finished. I rest up and look at the studio equipment again. I’ve got at least twelve sketches of new tunes recorded into my phone, and I feel pressed to get them properly recorded.

I haven’t produced a new CD in almost three years, and am beginning to think that the format is a waste of time and energy. Owing to the fact that I am a visual artist as well as a songwriter, it only follows that I feel it necessary to do all of the cover art and liner notes myself. I’d like to just quit production of CDs, however the artist in me eschews mp3 files, and feels that in order to truly release songs, they must at least be recorded to CD to count as a ‘work’. I come from an era that the purchase and ownership of a physical product was part and parcel of a ‘music collection’.

I reflect on my immortality, and hope to the heavens that I do not die, leaving a bunch of orphaned tunes on my phone.

After putting another load into the clothes washer, I sit down at my desktop to work on a generation of my on-line genealogical tree that has been giving me a problem, but this is not what I really want to do. I see enough of this on days that I can do little else. Besides, the light from the screen hurts my eyes.

I need to get back to work. After folding the dried clothes, I empty the dishwasher, and then sit down to rest and vape. Darn it. Where did the time go? It’s a quarter to eleven, I’ve drained an entire pot of coffee, and I need to cook something. Won’t everyone be surprised when they get home! Oh, boy! A hot meal.

But I’m already feeling the effects of my efforts, and I’m thinking that tacos sound extreme enough for what is left of my energy reserves, so I start cooking the meat and chopping the onions. Repetitive motion tasks seem to be the worst. Onion chopping kills my arm now. The onset of fatigue is so quick that it still leaves me incredulous, but there was a time that I was capable of butterfly curls – 50 reps of 25 pounds – without breaking a sweat. Glory days.

After eating, I’m shot. Food affects me like a Valium, and sleep becomes unavoidable. While lying in bed and checking my Twitter feed, I glance across the room at my recording equipment once more. How many times in the past few years has this scenario played out? I can only hope that tomorrow will be as productive as today was, but experience has taught me that tomorrow I’ll most likely feel as if I’ve been beaten with a rubber hose because of today’s efforts.

If I’m lucky, I’ll feel better in a few days and will be able to begin the cycle all over again, but my chance of ever getting the studio back together looks slim from this side of life.

By the way – in the event that something unexpectedly happens to me, the code to open my phone is PEnnsylvania 6 – 5000. If there are any tunes on there, I would like to think that one of my musically inclined colleagues will take it upon themselves to finish those tunes for me.

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.

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.