I have a long list of illnesses (see it here). In 1995 when I was fifteen, I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Saturday, March 24, 2012

Motivation

  UC = ulcerative colitis     BM = bowel movement  

"The cheif cause of failure and unhappiness is trading what we want most for what we want at the moment."  -Zig Ziglar

What I want (DESPERATELY) at the moment is to lie down and relax after a long day at work.  Instead, I lace up my running shoes and head out to beat the pavement, because what I want most is to reach my fitness goals.  One thing I have learned recently is how to be my own inspiration.  I have never met (nor can I find) anyone else who is trying to do what I'm doing, so I have to do it all on my own.

It may suprise some people that more days than not I actually consider skipping my workout, even when I'm healthy.  I have a little conversation in my head in which my inner couch potato tries to rationalize my need to rest to my inner athlete.  Every day I have to somehow dig up the motivation to make myself get out there.  This effect is tenfold when you add a dibilitating disease and intense side-effects from hardcore meds.

Another motivator:
new work-out clothes!
Motivating one's self can be one of the most difficult things about being an athlete.  When you have health challenges to boot, you do WHATEVER you gotta do to make it happen.  I've learned to take advantage of the moments of the day when I feel less fatigued.  If I think I can muster the energy now, I go now, because it might not be there in an hour.  In fact, it probably won't be.  Even if I'm tired, I remind myself that I will be even more tired later in the evening, so I'd better get it out of the way.

Today after work, I was so fatigued it took everything I had to finish grading that set of papers before I got in my car to drive home.  This is the precise moment that I had that conversation with myself on whether or not I would work out today.  I was sooo tired I could barely keep my eyes open and was leaning heavily towards the going-straight-to-bed plan.  But I knew I would regret it, so I didn't decide right away.  What I did instead was turn the radio station to a really upbeat song, crank the volume full-blast, and scream the lyrics at the top of my lungs all the way home.  By the time I pulled in my driveway, I was ready to go running.  The key to motivation is flexibility and creativity... you do whatever it takes to get you going.  Use a strategy until it no longer works, and then switch and find something else that does work.  You can always cycle back to it later.  A good mantra can also work well, if it's the right set of words for YOU.  Find a phrase that makes you feel empowered, pause the TV, and repeat it to yourself as you get off the couch, as you lace up your shoes, as you walk out the door.

When we feel like life is holding us back, it's usually more of a mental game than a physical one.  One other strategy I rely on heavily to keep myself going is visualization.  When I feel like I just can't run any further, I picture myself enjoying the end result of what it is I'm working towards.  I don't just picture what I want to look like (hint: defined abs), but I really feel what it's like to have it.  I envision myself as a super-fit athlete playing chasing games with my super-fit future-partner on our runs, looking and feeling fabulous together as we flirt in the sun.  Or I'll fantasize about scoring the winning points as the lead jammer in a roller-derby bout and impressing all my team mates in the process, high-fives and hugs all around.  Or winning a boxing match, or crossing that finish line as my friends and family cheer me on, or successfully fending off an attacker.  Whenever I lose myself in these dreams, I find myself running faster and farther with less pain and discomfort.  It doesn't matter what the dream is, as long as it keeps you going.

Facing the kinds of health challenges that some of us face on a daily basis for months or even years on end can easily lead us to feel like helpless victims of our own lives.  Yes, I am sometimes tempted to just give up, give in, and allow myself to drown in my own weakness and self-pity, letting the disease and the drugs take their toll.  More often than not, though, my challenges don't make me feel weaker, they make me feel stronger.  Let me explain...

My friends and family may be around to offer help when I'm sick or moral support when I'm down, but ultimately this is a journey I walk alone.  No one in my life will ever fully understand how much steel will power it takes for me to put on my running shoes when I am utterly exhausted, nauseated, and weak with stomach cramps.  None of them know how difficult it is to make myself KEEP running fifteen minutes in, when I start feeling that deep-set ache in my ribs or shoulders, signaling that my body is running out of glycogen or oxygen faster than it should because of the immunosuppressing drugs I'm on... as I force myself to continue, taking deeper breaths and silently urging my body to release the fat stores to give me the energy I desperately need to keep going.  No one knows how sometimes painful it can be thirty minutes in to clench up and continue pounding that pavement while even more blood is pooling up at the "out chute," begging to gush forth at the slightest jostle of the wrong muscle.  No one knows how much determination it takes to push myself for that hard kick at the end of my run that used to feel so envigorating but now makes me feel like my heart is going to explode due to the prednisone.  None of the other hundreds of runners at that 10k knows that I'm running the exact same distance as they are while carrying double the weight.  This is the journey that I walk alone.

All of this knowledge, though, does not make me feel helpless and sorry for myself, as one might think.  This knowledge makes me feel more powerful.  The extra challenges do not make me weaker than other athletes; they make me stronger than other athletes.  I am going the same distance, lifting the same weight, and making the same progress all while hurdling these huge obstacles that average athletes aren't contending with.  This knowledge makes me run harder, faster, longer.  It is what I was thinking about during my run today, and my pace ended up being faster than that of my last race.

We all have different challenges in life, and we have no choice but to play the hand we're dealt.  Don't allow your challenges to get in the way of living the life you want.  Don't allow what you want at the MOMENT to take precident over what you want MOST.  Whatever your goals are, whatever journey you're on, and whatever obstacles you're facing.... walk towards them head-on.  You may stumble along the way, but then you pick yourself up, dust yourself off, and continue on.  Learn to be your own inspiration, and fight for it.



T H I S   W E E K ' S   H E A L T H   L O G
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My Condition:  Mild/moderate ulcerative colitis since 1995, severe pancolitis since 2011.

Current Symptoms:  hardly any cramping, loose BM 2x/day, some mucous, some blood, moderate amount of gas.

Prescription Meds:  azathioprine (100mgs tapering on), prednisone (40mgs), Asacol HD (4800mgs), mesalamine enema.

Current Side-Effects: constant fatigue, weakness, shakiness, elevated heartrate, arrhythmia, insomnia, inability to concentrate/loss of focus, increased appetite, occasional nausea, moon-face, ultra-sensitive teeth, thinning skin, elevated white blood cell and platelet count, anemia/low hemoglobin count (carries oxygen from lungs to rest of body).

Supplements:  creatine, BCAAs, CLA, L-glutamine, glucosamine, whey protein (post workout), casein protein (before bed), Omega-3, calcium, vitamin D, vitamin C, biotin, multi-vitamin.

Diet:  Breakfast – spinach/bell pepper scramble topped with salsa, whole wheat english muffin.  Lunch – large salad with diced chicken or turkey and low-cal dressing.  Snack – protein bar or rice cake with natural peanut butter.  Dinner – extra lean ground turkey, nonfat refried beans, bell pepper, and sharp cheddar in a whole wheat tortilla topped with guacamole, baked tortilla chips on the side.

Exercise:  Mon – 60 mins weight-lifting (upper body “push”).  Tue – run 2.5 miles, walk 2.5 miles.  Wed – 60 mins weight-lifiting (legs). Thu - run 3 miles, walk 1.5 miles.  Fri - 60 mins weight-lifting (upper body "pull").  Sat - skipped the long run due to an unforseen bad reaction from the previous night's alcohol.  (Lesson learned: do not mix alcohol with immunosuppressants.)

Stats:  height 5'7", weight 144 lbs, body fat 15%.

Have Tried:  Lialda, Endocort, Prednisone (dependent), Canasa, Cortico-foam, probiotics, L-glutamine, licorice, various other supplements, Specific Carbohydrate Diet, FODMAP diet, various other dietary changes.


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5 comments:

  1. I have bookmarked this blog and will pull it up and read it ANY TIME I have that urge NOT to run. You are truly and inspiration. BRAVO!

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    1. Thanks for the support, Divalicious! :-)

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  2. Thank you for this blog. I linked from Healing Well and it's increadible how much we have in common. To include the severity of the disease, the drugs we've tried and the drugs were are currently taking (on Asacol, just started Imuran 100mg and tapering off Prednisode). I'm athletic as well and am struggling so much with the fatigue and muscle loss. Thank you so much for sharing. It really helps. ~M

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    1. :-) Thanks for the comment. It's nice to know we're not entirely alone in this (though it may feel like it). The idea that I could be helping/inspiring someone else with my journey helps to keep me going. :-)

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  3. Good to see someone that isn't just feeling sorry about themselves. I feel so many people when faced with these kind of things, just give up. It's easier than pushing yourself, but in the long run your going to be in worse shape. I am just at the beginning of this journey, since I was just diagnosed. I have been doing pretty vigorous exercise for three years, with only mild symptoms. Now that I'm on the med I know that this may get tougher, but I'm not going to simply give up.

    For me my motivation is my wife and son, to be able to runaround and be crazy with him. Also, I have a pic from when I was at my heaviest, so when I feel like just stopping, I just look at that pic, and think never again.

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