What’s YOUR Excuse? Who Are You?

Nearly 7 years ago, I could barely walk.

I’m fed up with telling my fibromyalgia diagnosis story, which I’m sure can be found here somewhere, but I’ll tell you what happened after the year of blood tests and radiology. I started walking two and a half minutes out the door, and then two and a half minutes back. That was how I started. That was the limit of what I could do.

Fibromyalgia (among other neuromuscular disorders) is characterized by exercise intolerance. When normal people exercise, they feel fantastic afterward. They have energy and motivation for the rest of the day. I did not.

What many of you don’t know is why I started noticing problems in the first place. I began an aerobic training routine on my then-fiancé (now exbf’s) XBox. The “game” is called MyFitness, and it customizes workouts for you. I got up at 5:30AM to do that shit. Then I’d go to work feeling like I had the flu. Then I started randomly falling.

The falling is what got me in to the doctor, not the pain I’d had since I was six, not the cognitive hiccups where my brain confused words, not even the constant fatigue. That had been my life for so long, I figured that was just me. Falling for no reason while I was crossing the street, however? That was a wake up call.

My doctor initially thought I had MS at best, ALS at worst. A year of testing later, a neurologist confirmed I had fibromyalgia. She said “Yep, you guys have exercise intolerance, but exercise is the only thing that will start repairing your muscles. Start slow.”

So I did. I reported my progress to my online support group. You’d think I’d introduced television to Spanish Inquisition-era Europe. I was pretty much met with “Burn the witch!” and understand why. Most of the people in my FMS support group took even longer than my then 32 years to be diagnosed. They had tremendous damage and extremely sensitive pain receptors. Their doctors had put them on Fentanyl patches and disability payments.

I had asked my neurologist if this would be my fate. “God, no,” she said. “You’re pretty far gone, but you’re not dead and you won’t die from this. You just have to do some work. And here are some anti-seizure drugs and muscle relaxants. They help.”

Kinda. The work did more for my body and spirits than the drugs. I started walking 7 minutes a day. 10. 15. I bought myself a cheap ass recumbent bike on Amazon and got up to an hour three times a week of exercise.

My body was performing better, but the fatigue and pain and cognitive stuff continued to be an issue. I also wasn’t losing much weight despite working my ass off. A friend suggested I see an endocrinologist. Yes, I had low thyroid. More importantly, I had celiac disease.

The only “cure” is a gluten free diet. I lost 40lbs in a year without trying, simply because my body was now able to digest fat, and I stopped being hungry. I also got off every medication–all the medication–even the anti-depressant I’d been on more than half my life.

Then my “almost marriage” fell apart. I moved to LA, kind of exercised, mostly didn’t. I ate a bit better. I lost another 20 lbs. I gained back 10.

Four weeks ago, an extremely kind (and tactful) friend whose wisdom I trust above all recommended a personal trainer to me. I investigated this trainer. He seemed a little intimidating, and I couldn’t figure out what his experience with neuromuscular disorders was, but the evaluation was free, and I made the appointment. As you all know, he destroyed me the first day, and my pain threshold was challenged for the subsequent four days to a degree I had not felt for years.

My car had some fairly expensive trouble. Despite using crutches to get around, I was so convinced I could challenge and overcome this pain, I broke down in rare tears thinking I might not afford to start training. My generous and extremely thoughtful roommate helped me with some of that expense (and tire changing and ride giving and overall listening) so I could sign up for a month.

If you had told me three weeks ago that I’d be eating 1200 calories a day of protein and green veggies, and doing 60 bar push ups, 60 ring pulls, 45 deadlifts, and voluntary interval cardio, I’d have told you that you were high.

If you told me that nearly 7 years ago, I would have thought you cruel.

I no longer know who I am. People who read my old blog years ago read the exact same sentiment as I was going through my medical tests. I could no longer do anything. I was the girl who went out dancing; I was a happy cook and cheerful homemaker who could no longer lift a pan or push a vacuum. I had to redefine myself as a person who couldn’t.

I am now a person who not only can, but must. I enjoy the discipline of eating properly. I enjoy being challenged by my trainer to push the thresholds of pain and strength. And bitches, I enjoy this definition I’m starting to see. And the 15 lbs I’ve lost.

I don’t know who I am right now, but I enjoy meeting her. As I edit that old blog so I can publish it as an ebook, I see how that girl felt and I want to shake her. I want to slap her sometimes. She put up with so much crap. She succumbed to despair a lot. She used humour to drag herself out of it, and that is the one consistent thing we have in common. But I don’t know who she is. I don’t like her. No wonder she hated herself. She was a fighter, but she gave up in so many areas. She made excuses for others. She ate a lot of donuts.

I hope in a year to look back on this blog and say “I don’t know that girl any more. But I’m grateful for what she’s done for me. I’m grateful she surrounded herself with quality people. I’m glad she found friends who care about her enough to call her on her weaknesses.”

For once, I’m enjoying not knowing who I am. It’s like going to a party and finding myself talking to someone fun only to realize they’re super famous for doing something awesome that I never even heard of because I am a shy bookish introvert. I’m like “Who is this fierce bitch?! I dig her!”

Maybe in a year, I’ll know her. And she’ll take me places I’ve never before been. TAKE ME, FIERCE BITCH! Let’s go!


4 thoughts on “What’s YOUR Excuse? Who Are You?

  1. Zoe Tyler says:

    Your journey is so touching, I hadn’t realize a lot of it, even following you for so long on Twitter. I just wish you’d give yourself a break, though, that you did the best you could do at every step. Your faith (fighting spirit) is inspiring.

  2. Good for you, KJ. If pain is to be your constant companion, might as well make it your bitch.


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