This is Why Exercise Can’t Cure Illness

This is Why Exercise Can’t Cure Illness

One of the most annoying misconceptions about many chronic illnesses is that you can transcend the symptoms by exercising or doing physical therapy. This untruth is especially bothersome for people with Lyme disease, fibromyalgia, myalgic encephalomyelitis (MECFS), and other illnesses that aren’t acquired through inactivity or poor lifestyle choices. Take Lyme disease, some of the most healthy, active people get the illness. These people are hikers and fitness nuts who become severely ill and can no longer do the workouts and activities they love. The same goes for people with MECFS. But for some reason, perhaps because people fail to see the stark contrast of these patients’ lives before and after they get sick, there is a persistent belief in society and the medical establishment that if only they started to exercise again they would heal themselves and get back to their old way of life.

People with Lyme and MECFS frequently get grouped in with people who have certain acquired conditions for which exercise can be an effective treatment. But for those of us with severe Lyme and MECFS, treating our illnesses with exercise is like putting middle schoolers in college classes and expecting them to do well, not drop out and be filled with resentment for the rest of their lives.

This is how I feel when someone insists that exercise is a viable treatment for my condition and I should do physical therapy even though there is an illness still wrecking my body. The problem is: the illness isn’t done doing damage and exercise will only cause more harm. Nobody heals a broken leg by running a marathon. For those of us with invisible illnesses, healing through exercise is pretty much impossible, and probably harmful, especially when our energy is needed to heal, not cause more stress. That is, after all, what exercise is — stress. By going for a run or doing push-ups, or even just stretching, you are putting your body under stress. For some people this stress is a good thing–the muscles break down, heal, and become stronger. But there’s no doubt that your body is doing strenuous work, of which a sick body either cannot do or cannot recover from. A sick body can’t handle the stress of exercise. It’s that simple. And if anyone knows this it’s me.

Before I got sick in 2010, I was a fitness instructor and competitive bodybuilder.

I used to throw weights around the gym like pillows and flip giant tractor tires in my backyard.

But then I got sick and had to learn, stubbornly of course, that exercise was not going to make me better and was probably going to make me sicker the more I did it.

Still, I fought this realization every chance I got. Even when I knew riding my bike was going to leave me curled up in a fetal position on the bathroom floor, I still went out for a ride. I still pushed the metal frame out to the street, swung one leg over the seat, hiked up my pant leg, and pedaled out into the world as briskly as my ailing muscles allowed. I felt the cool sea breeze whipping around my face, I smelled the foliage and saw the bright sun shining across the suburban landscape. But quickly it became clear that my muscles were pretending to be fine, they were trying to do what I wanted, and maybe they could for a few minutes, but then the facade faded and I returned home to find my own personal Hell waiting for me on the bathroom floor.

Every time I went through this vicious cycle of brief satisfaction followed by lengthy misery, I told myself I would never do it again. But I also told myself that it was absolutely worth it. And that’s probably why, despite my earlier and better judgement, I kept doing it.

Eventually my body put my mind in submission. It quite literally stopped going along for the ride. It was done pretending that it could keep up with my active lifestyle. My body just couldn’t work out anymore. I tried to do light forms of exercise, like foam rolling or stretching, but my inexplicably inflamed muscles gave out before I could even start the workout. And now that I’ve been bedridden for three years, even thinking about stretching is dangerous because the margin for overexertion is so fragile I inevitably overdo it and hurt myself.

The other day, for instance, I realized “Hey, I haven’t flexed my arm muscles in a long time.” So I did. I flexed my biceps and boy did I regret it. I slowly twisted my wrist inward and felt the mushy muscle pop, as if to say “Hey, remember me? Why don’t you use me as much as you used to?”

My entire arm seized up and I experienced pain of which I had not felt in a long, long time. The initial pain was probably a strained muscle. This happens all the time to deconditioned bodies, but what separates a sick person’s injury from that of a healthy person, is the debilitation and prolonged recovery. I literally couldn’t use my right arm for an entire day, it was profoundly weak, in excruciating pain, and immobile. The injury had a ripple effect through my entire body. I became nauseous and weak; my whole body throbbed with inflammation. Why? Because I flexed my arm for a few seconds. Unbelievable.

And then there are my past attempts at rehabbing. Last summer I was able to get myself out of bed for the first time in two years. I was even able to stand on my own. Then my health took another dive and any aspirations of continuing to rehab were put on hold. I haven’t gotten out of bed since.

Now imagine being someone who used to lift more than 400 pounds and having to cope with such profound weakness and an inability to rehab. Imagine being anyone with such an illness and having someone tell you that the same thing that just hurt you, the thing that makes you sicker, will make you better.

I can’t even count how many times someone has gently suggested that I try some sort of exercise to improve my health. And every time I resist the urge to go on a sardonic rant. I’ve had people tell me to exercise because my muscles will atrophy (which is true, but when you’re sick there’s not much to do about it). I’ve had people offer to make me workout plans to “get back in shape,” to which I wish I had said, “No thanks, I used to be a trainer, if I was able to exercise I would make my own damn workout plan.”

But the most annoying suggestions come from doctors and other medical professionals. Because they have impressive credentials their suggestions automatically carry more weight, but they can be just as ignorant as laypeople. I don’t think I’ve seen a doctor while I’ve been bedridden who hasn’t suggested I exercise in some form. When I was at my sickest point, barely able to move in bed, a doctor examined me and prescribed a few physical therapy sessions. I didn’t make it five minutes into the first session before I had to stop and nurse an injury. It’s amazing how even the most helpful, knowledgeable medical professionals still can’t resist the urge to suggest physical therapy or graded exercise therapy.

Perhaps these doctors have good reasons, at least in their minds, to believe that exercise is a viable treatment option for illnesses that leave the body so debilitated the patient can’t even sit up in bed. After all, I imagine some version of this is what many medical schools teach, although I’ve never studied their curricula. And then there’s the societal notion that exercise is never harmful and is always a good thing, if not the answer to many health problems. Just take a look at the countless number of studies done about the benefits of exercise on chronic diseases, as if these conditions are dough just waiting to be shaped by the same cookie cutter over and over and over again. I’m sure someone has done a study about the adverse effects of exercise on chronic illnesses, or at least I hope they have. Though, I’ve looked and can’t find any such study. Perhaps it’s been buried by the bevy of redundant studies insisting that the opposite is true.

Personally, if I was a researcher, I would want to think outside the box. Why would anyone want to do a variation of a study that has been done so many times before? Especially when it leads to misconceptions about some very sick people. Just look at the damage that continues to be done by the PACE Trial despite it having been debunked.

Still, I truly believe that most people who think exercise is universally beneficial tend to have one thing in common: good intentions. They care about and want to help sick people, otherwise they wouldn’t even bother making a suggestion. Their hearts are in the right place, but their heads aren’t. Unfortunately, the only way they know how to help is by offering unsolicited advice about something they know little, if anything, about. Even though I wish these people wouldn’t offer their flawed input, I try to remind myself that despite their ignorance, their motives are good. They aren’t telling me to exercise because they think it’ll hurt me, even though, in actuality, it certainly will.

I also try to remind myself that I used to be ignorant about the same thing. I used to be the gym rat, the sweaty guy flexing in the wall-length mirrors. I used to write articles about the best way to exercise on a diet and how more people should do Olympic-style weightlifting. I can’t say what my reaction would have been back then had I come across someone as sick as me now. I like to think that I wouldn’t have known what to do, but I would have been smart enough to acknowledge the gravity of the situation — how sick the person was and that their ailments far exceeded my scope as a fitness expert. But, like so many people who ask ignorant questions and offer unsolicited opinions these days, I very well could have told them the same thing: Just go exercise.

Luckily, my outlook changed. I was about a year into the illness and I was writing an article about working out at the beach. I realized, “Fuck, I can’t do these exercises. What am I doing? Why the hell am I trying to do squats with a piece of fucking driftwood on my back when I can’t even go grocery shopping?”

The realization made me very sad, it still does. I had my favorite thing, the thing I loved to do most in this world, taken away from me. But that’s life. It’s not fair, far from it, but I’ve learned to adapt to the unfairness of my circumstances. That is, after all, the only thing we can do to move forward.

A few things before you go:

1. Thank you for reading!

2. SATURDAY, MAY 12th is International ME/CFS Awareness Day. There are protests and advocacy events planned in more than 100 cities around the world. Please join in. You can find the event nearest you or simply take part in advocacy on social media using #MillionsMissing.

3. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would be very grateful!

4. If you would like to donate to support this blog I would be equally grateful!

Smashing Pumpkins And Other S#%t

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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Jamison Hill Has A Cold 

Jamison Hill Has A Cold 

Jamison Hill, holding a shot of Jameson Irish whiskey in one hand and a glass of kombucha in the other, sat at the end of the bar between two gorgeous women who were waiting for him to speak.

Jamison was sick. He was the recipient of an exceedingly common ailment. So common in fact, most people call it insignificant. But when it afflicts Jamison it is very significant. It can throw him into fits of intense panic, paranoia, and even obsessive bouts of cleaning. It can be life-threatening. Jamison Hill has a cold.

Okay, this is the part of the post where you say, “What in the name of Goose Gassage is he talking about?” Well, first off, thanks for tolerating that weird introduction — an homage to one of my favorite pieces of writing. And now let me explain. 

My favorite magazine article ever written is Gay Talese’s “Frank Sinatra Has a Cold.” What is most fascinating about the article is that Talese never actually interviews Sinatra. Instead he observes Sinatra from afar for a few weeks while he has a cold. Among other things, Sinatra comes across as a crabby, entitled celebrity. In one passage Sinatra is in a bar and pokes fun at a young screenwriter’s footwear. Apparently he didn’t like the guy’s boots. Come on Frank, not everyone wears Spanish leather, or whatever the hell kind of shoes celebrities wear. 

The two become combative, then Sinatra says the writer’s last work, a movie called The Oscar, was “crap.” The odd thing is that Sinatra was actually in the film, so he was calling a film he appeared in crap. This makes about as much sense as spitting in your own food. But hey, I’ll hold my judgement. He did, after all, have a cold. 

After reading the article I came to the conclusion that perhaps it’s not a good idea to hang out in a bar when you’re sick and then try to make fun of someone who wrote the screenplay for your last movie. That lesson will definitely come in handy for me one day (#ThanksFrank).  

Sinatra’s pattern of arrogance and irritability continues throughout the article. And oddly, I can sympathize with him; well, except for the entitled celebrity part. Having a cold is just about the worst thing that everyone in the world will have to deal with countless times in his or her life. Although a trip to the DMV is a close second. Personally, a cold turns me into the worst version of myself and the world’s biggest baby. And that was before I got MECFS, a disease that makes a hug feel like you just got locked in a basement with that gimp guy from Pulp Fiction. 

Ouch!

Since I came down with MECFS six years ago, the occurrence of a cold has gone from hyperbolic inconvenience to life-threatening siege on my body. Now the latter may still seem like hyperbole, but let me elaborate. 

I’ve endured three colds, or flus, or whatever you want to call them, since I’ve had MECFS. The first, about six months in, was not too bad. I recovered in a week. The second, January 2015, was horrible. It is the reason I became bedridden. I hadn’t been sick in almost four years and I distinctly remember saying I wouldn’t catch the bug that was going around. Jinxed it

While my health had been declining gradually the previous year, the cold nearly took me out for good. One day I was walking around outside, the next I was too weak to brush my own teeth or get out of bed. There were other factors too. I may have taken too much generic cough medicine, which I’ve heard is chemically similar to crack or meth or one of those adult party favors. 

In many ways, 18 months later, I’ve yet to recover from that cold. But I have recovered some; just enough to catch another one. 

Like many awful things, my recent cold started mysteriously. On Friday, October 7th, my allergies were really bad. Or so I thought. My sinuses were inflamed, eyes burning, all that fun stuff. And now a few days later it’s a full-blown mucous party in my head. And in case you’re wondering: there ain’t no party like a mucous party, ‘cuz a mucous party don’t stop. 

Who would have thought I could fit a Coolio and Sinatra reference in the same blog post? 

Anyway, whenever I get a cold I panic. Big time! Maybe not externally, but on the inside it feels like a mix between “Uh oh! I forgot my wallet and the cashier needs me to pay for the 27 bags of avocados I just had her ring up,” and “Whoa . . . I just took ‘shrooms in the middle of the desert. Why did I just take ‘shrooms in the middle of the desert? Hey, hey, guys? Why am I in the middle of the desert? Guys? Guys?! Hey wait, where did everyone go?” Yeah it’s that bad, because being sick on top of being sick with MECFS is a scary thing. I mean how many sicknesses can a guy handle? I already have three active viruses roaming my body like one of those iRobot vacuums (which I really want). Can I really handle a cold on top of it? And if I can’t, what would that mean? 

Well, luckily my body has handled this recent cold fairly well albeit worse than my pre-MECFS days. Within three days I went from sitting up, talking to my cousins, eating scones, and letting enough light in my room that people could actually see me and my abundance of eyewear, to not doing any of those things. Once again my room is dark, I’m drinking meals through a straw, and while I can still talk a little, my voice sounds like I just spent the last 50 years smoking cigars. 

The good news, however, is I feel confident with my IV treatments I will recover much quicker than my last cold. A good sign is the fact that I’m writing this post. I may feel like crap, but if this cold were as bad as I expected it to be, I would not be writing this. I would have lost all modes of communication. I would have had to go back to using hand signals and the tedious alphabet spelling system I still have nightmares about. I would have had to keep my eyes covered at all times and my phone would have resumed its depressing status as an extremely overpriced paperweight. None of that has not happened, but the thought still haunts me everyday: I can’t go back to that life. And to think I lived like that for over a year. I’m not entirely sure how I did it, but then again at some point in the future I may say the exact same thing about this damn cold. 

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