Today, May 12th, is International M.E. Awareness day. There’s nothing I can say about this horrible disease that I haven’t said already on this blog. But I can share another part of my journey and battle with the disease with you. 

It’s bewildering to think I used to get up every day and lift hundreds of pounds, thousands if you count the cumulative amount of weight I lifted each workout. 

Every morning I ate some weird hippie cereal, drank some weird hippie drink, then got on my not-so-hippie bike and rode to the gym. There, if it was leg day, I would do some foam rolling, dynamic stretching, and then get to lifting. Deadlifts were my favorite exercise, probably because it was the exercise of which I could lift the most weight. My max was 425 pounds more than twice my body weight at the time. 

It was thrilling to lift that much weight, but also painful. The symbiotic mixture of pleasure and pain reminded me of the feeling of having a tattoo needled on my skin. It was a wonderful pain, the kind of pain that made you forget about what you thought was pleasure; pain was the best pleasure. 

When you can’t tell the difference between your own pleasure and your pain then you’re an addict.

Margaret Atwood

The enjoyment I got from the pain of lifting heavy weight may have actually been at the core of my addiction. I was addicted to exercise and I couldn’t stop doing what some people never do in their entire life — lift heavy weight. 

I was a competitive bodybuilder, but even that — the thrill and vanity of sculpting my body, then posing on stage in front of hundreds of people — was not my addiction. Rather, I was addicted to the process of striving for something I could never obtain — perfection. I always used to say, “Working out is the most important thing to me,” which was true. Sure, there were people more important to me, but people aren’t things and working out was the single thing I cared most about. 

Exercise still has a special place in my heart; it will always be a big part of me, regardless of my physical condition. The fact that I still feel that way after such a long absence is a reflection of how much fitness has done for me. 

I remember a conversation I had with my friend, Keith, who mentored me in bodybuilding while I was in college. One day he explained how my workout routine — a meticulous four-hour daily gauntlet of grueling lifts — may have actually been counterproductive to building the ideal bodybuilding physique, one made of lots of muscle and minimal fat. I thought about what he said — something I had considered myself prior to the conversation — and knew he was right. Excessive exercise is actually counterproductive to the ideal bodybuilding physique because you end up burning muscle, or at the very least not optimizing muscle gains. But I didn’t care. And that’s when I knew I was addicted. Like an alcoholic not caring if his drinking adversely impacted his career or family or anything else, I didn’t care that my dependence on exercise to cope with the stress and monotony of life, or the trauma from the fatal car accident I was in, took away from my family time or schooling or work or even my bodybuilding and modeling aspirations — the main reason I worked out so much. It was quite the anomaly. 

Even as I got sick and my health began to deteriorate, I refused to give up exercise. I remember going to the gym in a haze of sickness — weak and disoriented — trying to lift heavy weights and failing miserably. It was like someone just zapped away my strength. Poof. I literally lost half my lifting ability overnight. In my feeble attempts at lifting in the weeks following the initial onset of my illness, I could barely deadlift half my max. Soon I lost my ability to lift any weight at all. 

During a brief improvement in my health a couple years later, I tried to lift again. But I was dismayed to find I could barely lift a 25 pound kettlebell. The many months of resting had depleted the thing I had tried so hard to conserve — my strength. 

Shedding a bit of my stubbornness, I tried yoga and other forms of exercise that were not as harsh on my body. But I still rode my not-so-hippie bike on good days and a couple times I even tried to train a few clients through video chat. 

Those virtual training sessions were the hardest on my body, but also my psyche. I felt out of place, like a phony, telling someone to exercise and eat healthy when doing so had made me sick, or at the very least had a null effect on my ailing health. I couldn’t train myself, why the hell was I trying to train someone else? 

Because I loved it! If I couldn’t treat myself to the beautiful pleasure/pain I could bestow the feeling upon someone else. But alas I couldn’t even do that. Not for long, anyway. 

After my second virtual training session and consequential inability to care for myself, I realized I had to stop. No matter how much I loved it, and how blissful it was to exercise for a few minutes, spending days in bed and having people bring me food because I couldn’t take care of myself felt selfish. 

Now, seven years after my last heavy lift, the only reason I have kicked my addiction to exercise is because I physically can’t do it. These days I can barely lift simple items like my phone or a magazine. But as depressing as the comparison is, I find it sort of motivating — a challenge to conquer, however insurmountable. 

I may be physically weak but I’m getting stronger and as much as I miss lifting heavy weight, there is something inspiring about starting from scratch and working my way back up. 

So now here I am, shuffling my body to the edge of my bed, dangling my feet to the ground, and shakily planting them there. 

[wpvideo iXIdRTzD]​

Then there’s this walker — an instrument of my rehabilitation — of which I grip the bars in an almost identical way as I used to grip the bar before doing deadlifts. I may have even done the same “pre-game” ritual of shaking my shoulders to ready them for the weight they were about to lift. The real difference was, however, that as I lifted my upper body to a standing position there was no weight attached to me, no 400 pounds of artificiality, just 165 pounds of meat and bones. And I must say, it was the most satisfying lift of my life. 

I wasn’t expecting to use a walker for fifty years, sure, but hey, it’s good practice. I suppose. But I must also say, this lifting of my body to the standing position was painful. And not the enjoyable pain I described earlier. This pain was evil, unadulterated pain. It was the my-body-doesn’t-just-hate-me-my-body-is-going-to-kill-me pain. I hadn’t put any weight, let alone 165 pounds (or however much I weigh) on my hip, knee or ankle joints in more than two years. So naturally those joints were pretty unhappy, even as I popped Advil in my mouth like jelly beans. 

The irony of once being addicted to exercise and now finding myself rehabilitating my body is not lost on me. I hope nobody takes offense to me saying so, but I am very much an addict in rehab. And while it is by no means a conventional addiction or rehab, I am here nonetheless — hoping to recover. 

Thanks for reading and subscribing to my blog. Please take a few seconds to mention M.E. Awareness day on social media or to someone you talk to in person. It would mean a lot to all of us fighting this awful disease. 

And for those of you with the disease or close ties to it, please check out the tele-support group I just learned about. I haven’t been well enough to participate but I hear it great and hosted by the Solve ME/CFS Initiative, here’s the info:

It takes place every Saturday at 8pm EST. 

Dial-In Number: (712) 770-4700

Enter your Access Code: 915110 followed by # sign.

27 thoughts on “Standing ”

  1. I get 8 minutes of cardiac rehab now, after the stents. 2 min arms rowing, 4 min rest, etc., to the last 2 min leg rowing. Twenty minutes, twelve of it rest. Three times a week. And I’m immensely grateful for that much, because before I had nothing.

    It’s all done keeping my HR under 93 bpm – not letting myself attempt to go aerobic.

    I was never an athlete like you, but I loved hiking, and walking, and haven’t really been able to move much in the past ten years, so even this little bit is a real pleasure. Recumbent. Standing hurts – but it’s the spinal stuff.

    I hope you can slowly work your way back – but please be very careful you don’t set yourself back by trying to do too much at a time. ME/CFS will get you if you overdo it.

    And you have photos and videos – pretty impressive. We give up all kinds of things in life, but at least you had them.

    I hope they figure this out so you can get back to Life, Interrupted.

      1. Everything about getting better from this disease seems counterintuitive – but the pacing works for me, the rests work for me, and I’m trusting these tiny bits of exercise will work for me.

        Since I’m already not taking the drugs they want me to take (after careful reading of relevant papers), I figure the least I can do is do the ‘cardiac rehab’ – which is what we’re calling this tiny bit of exercise – which is ALSO the same thing as the Klimas protocol (not going over anaerobic threshold for me), it ought to be good.

        My more experienced friends caution it takes months before you feel the results.

  2. Hey!!!🎉🎊💓🎈🎈🎈🎈I haven’t even read the post yet, just saw the title and the first pic! Excited beyond words for you! Now I’ll read the post.😂

  3. Wow, your story is inspiring. I had one injury where I tore my ACL and Meniscus. The doctor said I had no ACL remaining. They had to use tissue from a cadaver. I was in a full leg brace for a few months. It was tough because I have 2 dogs and a toddler. I didn’t have any help with my dogs or my toddler. It was hard.

    You are definitely an inspiration and once I too was hard core into the gym. I’m not so much anymore and now my left knee is hurting. But, I’ve been taking collagen and the pain has gone away. Collagen is great for repairing tissue and preventing bone loss.

    I don’t know anything about M.E. and what you are experiencing. But, in the very short span of time in comparison to your struggle…I can empathize. I’m not sure if you can recover from M.E., as I don’t know enough. I can only wish the best for you and hope that you remain strong and keep standing. <3

  4. Cool post, Jamison, and I’m so proud of you! The stronger you get, that initial pain should get less and less. I’m elated! 👍🏻🤠💓💪🏻🖖🏼✌🏻👌🏻😅😌☺️😍

  5. Change your wording from hoping to recover to I WILL RECOVER 👍 fantastic post, feel the support and love willing you on in your journey back, feeling excited for you Jamie. 😊🤗

  6. Hey Jamison, that’s brilliant!! Brave and inspiring of you to share with us.
    I try to think of recovery as an adventure, sometimes twisted, sometimes amazing, mostly painful but making me stronger, always a process taking me somewhere usually unexpected, like talking to you from across the Atlantic Ocean and most of America from my room in a wee village in Scotland….never give up xx

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  8. I share a coping, resolving, growing, healing technique (CRGHT) I have developed
    It consist of an alphabetical index of the ways people have learned how to CRGH
    The accident and your illness have challenged you to learn how to CRGHT In turn I would like to ask you to assist me and others by going through the alphabet and think about the CRGHT techniques you have incorporated or are aware of as each letter described a technique we can use.
    Art admire, appreciated create, design, draw, explore paint
    Build stuff relationships life saving technology
    My intention it to then incorporate your insight into my list to share with others.
    I can then return the favour by sending you the full list for you to share with others should you care to. CRGH is a skill we can all benefit from improving.
    I hope you will consider my offer
    Best wishes with your CRGHT

  9. Thanks for sharing, Jamison. I recently started following you and am amazed at your inner strength and fortitude. You may not know it, and your may not want to be, but you are an inspiration.

    1. Wow Jill, that’s incredibly sweet! Thank you! As a friend recently told me: “It’s my little corner of the Internet” and honestly I love sharing it with wonderful people like you. Please keep in touch!

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