It was at about the six-month mark that I realized my case of mononucleosis from last year might be morphing into ME/CFS. It was a shocking thought.
I’d started lifting weights at 15. Annually, I spent more than 1,500 hours working out, and by the age of 22, I had devoted over 10,000 hours of my life to the gym. By Malcolm Gladwell’s standards I was an expert at exercising. Most of my workouts were between two and three hours long.
Each time I walked on the gym floor I was entering a proverbial weight lifting marathon. I would grab two 80-pound dumbbells and do lunges from one end of the gym to the other—50 yards or so. Then, I would go to the leg press and fill it with as many 45-pound plates as it could hold and do as many reps as I could.
That was just the warm-up. No matter how you slice it, my workouts were primarily about pushing my limits. I wasn’t so concerned about being healthy or even looking good—although those were nice sidebars—my workouts were about pushing the envelope and getting better and better.
It was a healthy stroking of the ego, for sure, but it was more than that. Sure, I would lift heavier weight than most other people in the gym, but I was never one of those guys grunting in the corner of the gym to get people to look at me.
In fact, attention was the last thing I wanted. When I was weightlifting, I was in a zone I did not want to be broken from. Weightlifting for me was about being in a zone of muscle and power. I loved it.
The exception to my introversion in the gym was working with clients. I would typically take my clients through an hour high-intensity circuit workout. It took considerable energy just to demonstrate exercises and correct form, and for them it was a major workout, but for me it was small potatoes. (Little did I know what having little energy actually was.)
I remember sitting down for an initial consultation with a client. We had never met before and I was filling out a medical history form on her; I asked how many colds she had had in the past year, she responded with only one. I immediately thought, “She’s healthier than I am.” I had caught at least seven colds that year and had the flu and pink eye as well. Additionally, I had major insomnia that, at the time, I thought was genetic. Ironically, these are all typical signs of over-training and over-exercising.
Then finally, the Sunday after Thanksgiving, I went for one of my marathon-like workouts and the walls started closing in. I was dizzy, with chills and intense heart palpitations. I thought I was dying, or at least having a stroke. It was a scary mess. I was eventually diagnosed with mononucleosis, and later, when I didn’t recover, ME/CFS.
A year or so after my acute infection I began to see Dr. Daniel Peterson. Now I was sitting as a passenger while my mother did the driving to Lake Tahoe. Dr. Peterson was the first doctor to take the time to hear my concerns. On the first visit he saw me for over an hour, a shock after my 10-minute visits to my general practitioner.
We both had high hopes for his treatment—antibiotics and immune modulation—but over the course of a year, my condition merely seemed to ebb and flow, without any sort of definite progress. Exhausted by the effort it took to seek treatment, now, three years after falling ill, I have taken a hiatus from doctors.
My case of ME/CFS seemed to come out of nowhere. Looking back, though, there were definitely signs of illness on the horizon. I don’t like to attribute any one thing to getting sick, but the combination of the college lifestyle—drinking games and kissing girls—along with over-training (and more synthetic supplements than I care to recall) probably spelled disaster to a weakened immune system. Of course I know many people in similar situations who are healthy. It’s simply unfair to blame the illness on anything I did, or could have done differently. Still, throughout my illness I have not been impervious to beating myself up.
Since my initial onset, there have been countless moments of depression and remorse for the life I currently live, sadness for the life that I left behind, and anger for the helplessness of having an illness no one seems to be able to understand, and most don’t know exists. Initially, I was shocked and frustrated with the thought that I might never be a fitness model, a competitive bodybuilder or even a personal trainer again. Not being able to squat twice my body weight, or flip that giant tracker tire in my backyard again seemed unimaginable. In the midst of overwhelming frustration I find myself using what little energy I have to let out my anger, or any other emotion I am dealing with at the time.
However, after letting the tears flow and breaking a few inanimate objects, I always make it a point to get centered again. After all, it is only human to be angry, sad and/or depressed when faced with illness. Whenever I am coping with stress and various emotions, I try to just give in to the moment, but not to let the emotions consume me. In other words, I let myself experience what it feels like to be angry, sad, or depressed, but then immediately come back up for air— and experience how it feels to be the antithesis of those emotions.
This is a personal coping mechanism, which may not work for everyone, but I use it commonly. The process has been cathartic time after time. I may have had to buy my mom a new set of dishes from time to time, but in the end it’s worth it. Just as there is no feeling like having a good cry, or breaking a kitchen plate on the ground, there is no feeling quite the same as hope for the future.
Whether it is getting pumped to cook yourself an awesome dinner, or perhaps have a family member visit, looking to a brighter future has been an invaluable tool for me for staying optimistic with ME/CFS.
In this regard I’ve found that finding new dreams and aspirations are pivotal to healthy mental activity. In fact, I’ve found no aspiration is too small to have an influence on my happiness. Getting out of bed and stretching, or standing up while I do the dishes—even if only for a minute—is certainly better than nothing. On good days, I get by with a few squats or pushups. I aspire to do these exercises as much as my body will allow, and even if I can only do five reps, I will take it over none at all.
Finding Purpose Again
One day—if my body allows—I would love to reconvene with the old path I was on, but just because I can’t do that right now does not mean I don’t have a purpose. It is unfair to think that I don’t have a purpose, because purposes whether committed to or ignored are always present. Finding a purpose with my life has helped me to stay optimistic.
Whether it is to bring awareness to the illness, or somehow become a millionaire before I’m thirty (in my dreams), having a purpose has always been key for me. Old purposes have showed up in new ways and new purposes have manifested themselves during this big life change.
Not letting my limitations keep me down is one purpose I have. Staying centered and focused on what I can do – and celebrating that – instead of what I can’t do- is a clear purpose that takes work each and every day.
I firmly believe my purpose in life is also still fitness related. I can’t go out and train people anymore, but yoga and meditation, for instance, have really served me well while battling ME/CFS. That may sound a bit odd coming from a guy that used to only lift weights, but the truth is, with this illness you have to work with what your body allows.
My passion is exercise, and if I can’t deadlift 400 pounds, then I would much rather do yoga instead of sitting around wishing I could lift heavy weights again. Plus, I look at it all as an important part of fitness – and hopefully part of my rehabilitation process; you have to walk before you can run, or in my case, do yoga before strength training.
I now have the option to learn and advocate for an illness that I didn’t even know existed three years ago. ME/CFS may not be my passion, but it has certainly become my fight. While I still have hopes of training clients again I am a writer working from home now. I refuse to let my certification lapse, and have even trained a couple clients through video chat, which is, surprisingly, just as taxing as being there in-person. I have also been working on a non-fiction book based on my experience with exercise addiction and ME/CFS. I hope to have it finished sometime in the next year.
Moderation and Patience
This illness has taught me two vitally important things: moderation and patience. I now aim to work within my body’s limitations, instead of running it ragged, and I do my best to show patience with it whenever it does run out of energy and well-being.
Before my days of lying in the shower and sitting to do dishes, I was the sole survivor of a fatal car accident. There was only one other person involved in the crash, but walking away from it without a serious injury was a miracle to me. Sure, it was a traumatic experience, but it was still an experience, and that is exactly how I look at any bad things that happen in my life.
If you can find one—just one—good thing that came from an experience, than you are lucky to have had it. In the case of ME/CFS, or any other real illness/disease for that matter, it is an experience that not many other people will get to have. Just like I will never know what it is like to face the struggles of breast cancer, many people will go through life without ever feeling the symptoms of ME/CFS.
You may call that lucky, but—for their sake— but they will have their own fights and I hope they find wisdom in them. I’m looking for wisdom in mine.