You, ME and CBT

I remember when a doctor of mine suggested I incorporate cognitive behavioral therapy (CBT) and graded exercise therapy (GET) into my treatment plan. She might as well have said, “Hey Jamison, I’d like you to try smoking cigarettes to treat your symptoms. Start slow, maybe a few a day, but your long-term goal should be to smoke at least a pack a day. Sound good?”

Now if you just said, “Wait, there’s no way a doctor would ever suggest a treatment that’s as harmful as smoking cigarettes,” or something along those lines, let me tell you, that comparison is not hyperbole. At least not as it pertains specifically to GET. On the other hand, CBT doesn’t seem to be harmful, but I’d classify it as a method of coping with the byproducts of a horrible disease rather than an effective way of treating that disease. 

If you have never heard of CBT or GET (don’t worry, most people haven’t), or why they are so controversial (and often harmful) pertaining to MECFS, I recommend you read a pair of recent articles (links embedded below) outlining the debunking of most, if not all, of the evidence which previously suggested the two were effective treatments for MECFS. Perhaps the best example is a 2011 study from the Lancet, a highly regarded medical journal. The study, which is widely referred to as the PACE trial, was recently disproved by a swarm of independent analysts, after a court ordered the study’s raw data be released to the public. 

While CBT and GET were only two suggestions made by my doctor, and she compiled a long list of other treatments which included supplements, pharmaceuticals, and nutritional ideas like organic juicing, CBT and GET stood out like a pimple on an otherwise pristine forehead. 

This doctor of mine arrived late to the party, or so to speak. That is the incredibly sick person party. So I’m going to cut her some slack, especially since my experience with the last doctor didn’t turn out well. Besides, I can’t say it was the only time these treatments have been suggested to me. 

A family member of mine who works in the medical field suggested both GET and CBT, as did a good friend currently attending the top medical school in the country. It just shows how ignorant current medical professionals can be, and how the fault lies in our schools of medicine. 

In the six years that I’ve been sick I have tried both CBT and GET. I’ve worked with therapists who swear by CBT and doctors who insisted GET was the key to my recovery. I went from deadlifting more than 400 pounds when I was healthy to, as a concession, doing light yoga, going for short walks, and occasionally riding my bike. While it’s hard to say if these things were harmful in the long run, one thing is certain: they didn’t make me better. They obviously did not keep me from becoming bedridden. 

In my eyes anyone who thinks CBT or GET is an effective treatment for MECFS should walk up to someone with HIV/AIDS or Parkinson’s — both horrible diseases — and try telling them graded exercise and cognitive behavioral therapy will improve their condition. MECFS can be just as severe as these illnesses. I can’t imagine exercise or cognitive behavior having any lasting benefits for someone dying from HIV/AIDS or withering away with Parkinson’s. This, of course, is my opinion, which I will admit is based on limited knowledge of the aforementioned illnesses. 

The truth is, however, CBT and GET have been proven ineffective, if not counterproductive, at treating MECFS. And anyone who is at all skeptical may want to read the correct information on the topic before recommending them to a sick person. 

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Smashing Pumpkins And Other S#%t

I love to break things. Yeah, I know, who doesn’t? But I get such a satisfying feeling when I break something. Maybe not a bone, or a really expensive gadget, but breaking something cheap and discardable is satisfying. VERY satisfying! 

In 2011, after I was sick for a year, but had yet to learn much about MECFS, I remember being so incredibly angry — angry about the uncertainty of my health, angry that I had an invisible disease only I could see. At least back then I had some energy I could use to unleash my anger. I broke ceramic plates and cups, wood cutting boards, and on one occasion, I even destroyed two pumpkins and a ridiculously large zucchini my neighbor gave me. My buddy, Thomas, and I took our baseball bats to the backyard and pitched the giant produce to each other. Soon pumpkin guts were flying everywhere including at my face. It was fun and cathartic. I haven’t experienced such catharsis since. And seeing as today is National Pumpkin Day (I know, there’s a silly day for everything. I still can’t believe I forgot to celebrate National Oysters Rockefeller Day. WTF?), I must say I miss bashing a big pumpkin. 

Taking a baseball bat to a pumpkin was my way of coping, and while I have always paid a physical price for my outbursts while I’ve been sick — usually immense pain and weakness for a few days — at least back then it was an option.

These days it’s not an option. There’s no smashing pumpkins or breaking plates, and any physical outburst even remotely resembling those acts will send my health into a free fall. Rightly or wrongly, I still justify my furious actions by the awfulness of my situation and the disease that causes it. I do my best to stay composed, at least in the presence of my caregivers. When I’m angry, on the verge of exploding in a tantrum to rival that of even the worst toddler, I take a breath and firmly say, using my limited vocalization, “I need a minute.” Those four words make up a significant portion of my daily speech allotment. Some days I can only whisper my need for privacy, but eventually I get my point across. 

Then, after my caregiver has left, I find a light object and in one short, tense motion I hurl it against the wall. Bam! 

Over the months I’ve thrown everything from sunglasses and remote controls to seashells and tanning goggles. 

Before I got sick this sort of conniption would have been cathartic for me, to a certain extent it still is, but now my rage does not come without consequences. Almost immediately after I throw something in anger, my muscles seize up and fill with acid. The pain and burn is so severe I have no choice but to remain completely motionless. Then a profound weakness consumes my muscles and a sort of apoplexy hits as I remain unimaginably still, thinking to myself, “Why the hell did I just do that, was it really worth it?” A few minutes earlier the answer would have been an emphatic “Yes,” but dealing with the repercussions after the fact is a much different story — a story full of remorse and sorrow. 

MECFS is a debilitating disease which has left me severely deficient of key hormones like cortisol — crucial to processing anger and stress. And this only affirms my belief that there really is no healthy way to deal with anger when you have MECFS. 

Some people have suggested meditation, or worse, cognitive behavioral therapy (CBT). I don’t hesitate to throw my sunglasses at these people. 

“Hey, have you tried meditation?” Well, let’s see I’ve been sick for six years, do you really think you’re the first person to bring up meditation? As a matter of fact, I have tried meditation many times, I even went to a meditation group for awhile. It was great. I love meditation. But I want you to try something, if you will, or maybe just imagine yourself trying it. Stay in bed all day, don’t get out, just stay there. And when your stagnation becomes too maddening because you’re antsy from staring at the ceiling all day and you have yet to figure out how to eat, bathe, use the bathroom or drink water, then and only then should you close your eyes and try to meditate. 

The truth is, internalizing the trauma of being bedridden only makes it worse. It’s like someone telling you not to move or hours and then reflect on how it makes you feel and what kind of mental calisthenics you can do to sit still even longer. 

Forget that! Every fiber of my being wants to throw something at the wall, or break a window, or punch some stranger in the face (#sorrystranger), or do some hardcore drugs and wake up on top of a refrigerator in an unfamiliar house spooning a blowup doll who bears a striking resemblance to Whoopi Goldberg. 

Too much? Sorry. But see what I mean? These are the kinds of thoughts and emotions I deal with on a daily basis, and I have no way to cope besides: (A.) hurt myself in a fit of rage, or (B.) go insane trying to deal with the anger about my physical ailments by using some cognitive behavioral hocus pocus.

I often think about how I dealt with anger before I got sick. It was so simple: I put on mellow music from Jack Johnson, took a few rhythmic breaths, gripped a long metal bar and threw around a few hundred pounds of iron until my body was exhausted and my mind was finally at peace. And if for some reason lifting weights didn’t assuage my anger, I would run up a bunch of stairs with fifty pounds strapped to my back, or do some push-ups wearing a plastic sauna suit to sweat my frustrations away.

It is the mere thought of these past methods of coping that help heal my current frustrations the most. And until I can exercise again, until I can take a Louisville Slugger to an overgrown zucchini, well, I may just have to settle for throwing my sunglasses. 

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Gym Tales: The Guy In The Wheelchair 

“Excuse me?” a soft voice says coming from behind me. 

I slowly turn to face a woman wearing matching workout attire and a disgusted look on her face. 

“It seems the gentleman in the motorized wheelchair, um, well, it looks like he’s . . . he’s tracking feces all over the gym,” the well-mannered woman says as I try to rouse myself from a daydream. 

“Uh. I’m sorry, say that again.”

“The guy in the wheelchair?”

“Yeah?”

“He’s traipsing his own feces everywhere.”

I will never forget that interaction. It took awhile for the thought of someone smearing his own bodily waste on the floor to register with me. After all, dealing with human feces was not, as I understood it, in my job description. Besides, how could a man, albeit an incontinent man in a wheelchair who was unable to walk, leave tracks of feces everywhere? My first thought was he would have had to, well, hold on, hold on . . . let me give you the backstory first. 

Before I was a trainer I worked the front desk at a very large chain of gyms whose name just so happens to correlate with the number of hours in a day. Okay, all right, I’ll just say it, I worked the front desk at 24 Hour Fitness (they can’t sue me if I have no money, right?). The building I worked in was an old mill with original brick work and exposed steel beams. It was a joy to look at. The job, however, was not a joy. 

Before we get to the meat of this story, I want to mention how odd it was to work for a company whose name suggested it was open 24 hours a day when, in fact, it closed twice a week. In other words, one would think the gym never closed, but it did every weekend evening at ten o’clock, which made my job exhausting. 

Not only did I have to clean the entire gym, re-rack all the weights, and lock up before closing, I regularly had to explain to disgruntled members why our operating hours directly contradicted the company’s name. I would unenthusiastically say, “Yes sir, I know what the name says. No, I don’t know why we close early on weekends. I don’t make the schedule.” 

While working for the company, it would offer ridiculously cheap memberships on a promotional basis. This would attract people who couldn’t normally afford a gym membership, like homeless people. These individuals would strategically use the facilities to shower, stay warm, and store their belongings. A smart move in my opinion, but they too were outraged when alas they found out the gym closed, leaving them with no place to go. One such individual of special note was an octogenarian who, as far as I knew, lived in his wheelchair. He was almost always accompanied by his son, who didn’t seem to be very nurturing. The son was a middle-aged man who appeared to not bathe often, had matted hair, and always presented the demeanor of a meth addict. The father, on the other hand, was unable to speak, so I didn’t know much about him except, well, that he had horrible aim when defecating. For that reason I grew accustomed to calling him “the poop bandit.” Let me tell you why . . . . 

As a front desk employee I got paid minimum wage, which at the time was $8 an hour. I was a college student; fine, a low wage is to be expected, but damn did the company get its money’s worth. Let’s see, first there was no sitting allowed — none whatsoever. And management made this clear by not providing a chair for front desk employees. But still, even leaning or sitting on the cylindrical desk was forbidden. Every time I even thought about sitting down, a posture Nazi came out from his lair in the sauna to repeatedly beat me with one of those elastic exercise bands. I’m kidding, but really, I did get yelled at a lot. 

Next, I had to clean the bathroom every hour, on the hour. As someone who frequented the gym I appreciated this amount of cleanliness. That said, how ’bout paying a guy more than minimum wage to clean up poop? Ah, now we’re getting to the good part. 

So every hour I would walk into the guys’ bathroom, making my way through a crowd of naked bodies with greasy overgrown hair, then an overwhelming conglomeration of a dozen different cheap colognes. I would then proceed to wipe down every surface, encountering more body hair and debris. But my favorite part was trying not to retch every time I had to wipe up a mysterious bodily fluid. Saliva was a pretty regular occurrence, but every once and awhile I’d find a bulbous glob of congealed yellow, green, or worse, off-white fluid that made me want to not only quit my job, but burn down the entire building. 

On one particular day I was attempting to sleep standing up, which is almost possible when you hate your job as much as I did. So I was rocking and swaying, then the nice lady mentioned earlier taps me on the shoulder. 

She tells me an elderly member of the gym used one of the toilets, or tried to, and instead stepped in his own poop. Oblivious to the mess, he mounted his motorized cart and somehow managed to run over more feces leaving brown tire marks all over the gym. 

As you might imagine I was thrilled at the news, and my first task was to find the incontinent man. One might think this would be easy considering he literally left tracks everywhere he went, but I couldn’t find him anywhere, and by the time I got back to the front desk, sure enough, there were brown tire marks leading right out the front entrance. No joke! 

So there I was with a gym full of poop and nobody to blame. What did I do? I geared up with every protective layer I could find, no hazmat suits unfortunately. Then I got to work scrubbing the bathroom clean. The one bright spot was I got to pass on the task of cleaning the rest of the gym to the night custodian who, when he showed up for work, looked like he just ate an apple full of maggots, or well, someone asked him to clean up human feces.