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Posted on 6. March 2014


By Jamie Stewart

Most lives are defined by achievements: graduations, marriages, having children, getting the well-deserved promotion. These achievements help us to define who we are. When dealing with a chronic illness, achievements are measured in a different way, or at least they are for me.

The most mundane activities have now become an achievement. Getting out of bed and working eight hours: achievement. Taking the dogs for a walk: achievement. Going on a date with my wife: achievement. Dealing with daily stress and keeping it from triggering a negative response: achievement. 

For someone with a chronic illness, life is a game of energy management. Recently, I decided that I needed to become more active. Activity has been shown to benefit all aspects of life. But I'm scared. How much is too much? Will I be able to move the next day? Will my pain levels increase? All were valid concerns, and I weighed them carefully. Finally, I decided that the only way I would know would be to try. So one night a couple of weeks ago, I coyly said to my wife, "I'm going to use the elliptical."

 I was immediately dodging my wife's daggers because the last time I tried to exercise I ended up in bed for a week. Fearing for my safety, I quickly added, "It will only be five minutes - I promise!"

Three years ago, 60 minutes on the elliptical machine was just a way to kill time. Turn on a sporting event, hit level 10 and be off. Sweat would soon drench my shirt, and by the end I felt great! My stress was gone. I felt stronger. Most importantly, to me, I felt as though I did something that would improve how I looked. Back then, exercise was all about vanity. Lifting weights and pushing my body wasn't for health reasons - that was a side benefit. The real reason I did it was so I could keep from buying bigger pants while continuing to drink beer and eat chicken wings.

As I stood there contemplating using the elliptical for the first time in almost a year, I figured the best way to keep from overdoing it would be if I didn't turn on the power. No resistance, just a nice easy five minutes. I didn't use a timer; I let my body decide when I'd had enough. After what easily felt like five minutes, and because my legs were burning and rubbery, I stopped to catch my breath. I took a mental assessment of how I felt which was pretty good, and pulled myself back upstairs, triumphant! I was greeted by my wife who said, "I thought you were going five minutes?" I panicked. Was I really on it that long? Crap, I should have used the timer! "Sorry I didn't mean to go so long," I stammered. My wife countered, "No, you were only on it for two minutes. I timed you because I thought you would overdo it."

While I was relieved that I had kept up my end of the bargain, I was also dismayed that I had regressed that far. Two stinking minutes is barely long enough for someone to sell you some new T.V. gizmo.  But then I realized, why be upset? This is my starting point.

I am happy to say that I can now go seven minutes. I know, it isn't a lot, but it's the best I can do right now. The key is to consistently improve. The days of pushing myself to the point of physical exhaustion are gone, but that doesn't mean I can't improve my health.

It's hard to admit that I am so physically weak. I feel like the 98 pound weakling in the old Charles Atlas advertisement. Still, I hope that someday soon I can power on the elliptical. That will be an achievement, and I just might treat myself to some wings and beer. 


Comments (8) -

10:46 AM on Friday, March 07, 2014

I was really taken with your story. I, too, have to make different choices than I did 4 years ago when I was diagnosed with CVID. Today, it is: can I clean a room in the house today?; can I do things 2 days in a row without wiping out?; can I meet a commitment to a friend or family member?; can I maintain any energy in the last week before my IVIG? Some days I just feel as if I am walking in water, and I realize I need to give myself permission to do next to nothing that day. Other days, I relish achieving anything! I just try to take it one day at a time and listen to my body.

8:22 AM on Saturday, March 08, 2014

Without knowing your chronic disease it is difficult for me to relate to your comments.  I agree with your position that we must give ourselves credit for each and every one of our achievements.  I have 5 auto-immune diseases, each of them produces significant fatigue, one of them produces significant pain and I have been receiving weekly IVIG treatments for 9 years.  I cannot work and am totally disabled.  Some of your comments give the impression to me that we should not push ourselves.  It is this impression that I react to negatively.  I believe that we have to push ourselves to our physical limits.  For most of us our chronic diseases do not threaten our mortality.  They negatively impact our quality of life, but they won't kill us.  What will kill us is sitting around and not being physically active.  Push yourself to your limits on a daily basis.

11:36 AM on Monday, March 10, 2014

Bravo on starting "somewhere".  While we each have our own story, limitations, etc, we can all do "something" no matter how small the start. The effort counts, and listening to your body is wise.  One of these days you WILL be able to power on the elliptical, and when you do you might start out with a lower time than with no resistance, but that's okay.  Give yourself permission to let your body be your guide.

1:28 PM on Monday, March 10, 2014

After being hospitalized with my third case of pneumonia, I was diagnosed with CVID 3-1/2 years ago at the age of 37.  At first I thought I would have to give up running and cycling, activities I had participated in for years and really loved doing.

After a few months of treatments and feeling pretty good I decided that I was not going to let having CVID stop me from doing those things.  6 months to the day of my diagnosis I competed in and finished my first full marathon, in my goal time of under 4 hours.  Since then I have competed in 5 half marathons and 3 century rides.  Last year I decided that I was going to start competing in triathlons, with my goal this year to compete in a Half Ironman.  Sure I have to listen to what my body is telling me so I don't overdo it.  That's just part of the game.

My point in this is not to brag about my accomplishments, but to hopefully inspire and motivate others with CVID and other PIDs to get out there and do the things they love but thought they couldn't.  I applaud you for getting back on that elliptical, keep with it and you'll be back up to that 60 minutes before you know it.

Bob Furniss
5:35 PM on Monday, March 10, 2014

Your story is one of inspiration.  I was diagnosed about 15 months ago... and unlike some, have found a new normal through IVG...  late last summer I biked for the first time - and like you instead of miles, it started as blocks.  Lately there have been some new issues and I have stopped all together....  but perhaps your story will be the catalyst for walking/riding again...  Thank you for sharing your story!

Linda Thornrose
12:55 PM on Friday, March 14, 2014

Thanks for the inspirational story.  We all have our differing levels of limitations, but you encourage us with your experience.  I guess the most difficult thing I still deal with (after ten years of IVIG after diagnosis) is pacing myself.  It is different all the time, making me feel I am chasing my tail at times.  But, of course, we cannot give up.  I love this forum where we are able to share successes, failures and different ideas to help keep us trying.  God bless!

6:56 AM on Friday, March 21, 2014

I used to pride myself on how much I could get done in a day. If ten things needed to be done, and it took me all day and half the night? That was success. Now living with IBM, if I get two out of three done. Now that is success.

It has taken me awhile to accept that portion of my life. My type A personality had to take a backseat. It's not easy, but I'm a work in progress.

10:32 PM on Saturday, February 13, 2016

Very interesting article. Keep up the good work


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