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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.

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About Johnny Nowhere

Johnny Nowhere is a songwriter/composer and owner of Hell Paving Company, music publisher. Johnny doesn't really exist outside of the music industry and Facebook. He is simply a figment of my imagination.

4 responses »

  1. Filing for disability with M.E is one of the most stressful, time consuming tasks I have ever done, I have family members etc who help me with it, but it is a so demoralizing and undignifying, I, thankfully, haven’t had to go to appeal, my case was reviewed a couple of years ago, but they soon figured out their reasons were bogus, it is the only time that having Dystonia alongside M.E has benefited me. But it so sad that with this disabling illness we have to fight so hard to have enough money to live, when we’d happily bypass a million dollars (or in my case pounds) just to be well enough to work and earn, and ride bikes, like most of the human race can do. People need to start accepting that M.E is a real very horrible illness, which deserves recognition.

    I love your post. 🙂

    Reply
  2. Wow. This is eloquent and heart rending. Thanks for sharing our reality so poignantly.

    Reply
  3. Classed as a mental health illness by law despite being classed as a neurological illness by the World Health Organisation – how obscenely ridiculous! Thanks for having taking the time to tell your story and help raise awareness of the ill-treatment of people with cfs/me.

    Reply
  4. Johnny after several sleep studies and such my tiredness was attributed to narcolepsy. I know how you feel about the fatigue. Tried some natural health stuff in Music City but Im not feeling it. Short of having take a specific regulated drug called Zyrem, which Ive declined take, Im not sure how to proceed with this for the rest of my life. I look back at my early years and I had energy like a ADD gazelle. Got to working at night and going to MTSU, miss some classes, sleep in… I attributed it to the shift work. Be on one of my training flights with instructor and wish I was taking a nap…… 20 years later and I feel more and more drained. My wife being from overseas doesn’t really understand medical issues because they dont emphasize Biology and such. (Go to college for management degree and you only take the associated courses.) I look back and see how much of my life Ive pissed away feeling like this.

    Reply

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