My Story: Irritating and Insipid Inspirational Instructions

My Story: Irritating and Insipid Inspirational Instructions

Angelika Byczkowski

Angelika Byczkowski

If you can dream it you can do it!

If you think you can or think you can’t, you’re right!

Never give up!

These common sayings irritate me every time I hear them.

They imply that accomplishments are a matter of will, that mental desire and determination translates into achievements.

They imply that my chronic pain should not be a limitation for anything I really, truly, deeply desire to achieve.

I always prided myself on having practical dreams: own a horse, hike up mountains, ride my bike all over roads and trails, pursue my interesting high tech career and never completely retire, write stories and poetry enough to fill books, be one of those “old ladies” who wears purple, remain young at heart and in spirit.

I dreamed these dreams, thought about them, and I even lived them. I believed in them. I would never give them up because I knew that “where’s there’s a will, there’s a way”, and by golly, I had a strong and stubborn will!

But time passed and things changed.

I aged, my body changed, and by my late forties things were going seriously wrong. I couldn’t understand why it was becoming harder and harder to keep doing what I was doing, let alone make any progress.

My occasionally annoying back ache became a constant screaming nag, my intermittent joint pains became snarling beasts, and my uncomfortable muscle pain became crippling agony. All the mysterious pains I’d managed to work around all my life were now metastasizing into innumerable and insurmountable roadblocks.

I kept riding the same bike trails with the same friends, but those last miles uphill became more and more challenging. The pain in my legs would become excruciating and even after resting, would pick up right where it had left off. At times, my frustration would build into such a helpless rage that I would dismount, throw the bike down, and limp away in tears.

While programming computer systems at work, my back pain would grab hold of me and steadily escalate. I’d fidget, stretch, and squirm at my desk, trying not to lose my train of thought.

When I just couldn’t tolerate sitting any longer, I’d finally get up, angrily shove the chair aside, and drop to my knees so I could continue thinking and typing. This would only work briefly until my knees began hurting, but at least it gave me a break before getting back in the chair and starting the cycle over.

At meetings, my increasingly restless movements in my chair to evade my increasing pain drove my co-workers to distraction. I’d have to get up to stretch and pace at the back of the room until my hips were in flames, then seek out my chair again and start the cycle over.

In the computer room, I’d be setting up and connecting computer systems trying to keep track of all the cables, but I couldn’t stand still for long. The pain would burn in my low back, hotter and hotter, distracting me and making me clumsy as I fumbled with the cables.

When I couldn’t take it anymore, I’d finally just drop the carefully sorted cables and storm out of the place, out to the parking lot to my car, shove myself into the seat, and slam it back all the way to recline and finally relax those muscles in spasm.

Unbeknown to me, my body had been breaking down due to a genetic connective tissue disorder. By my early 50’s, I was finally completely overwhelmed by the painful symptoms and increasing limitations of my genetic connective tissue disorder, Ehlers-Danlos Syndrome (EDS).

My body is genetically programmed to produce defective collagen, resulting in weak connective tissue, which is part of almost all structures throughout the body. It’s most noticeable in my joints because the ligaments holding them together are loose and getting looser. I’m like a string puppet on loose strings whose joints can snap together painfully misaligned and dysfunctional.

Eventually, I had to face some painful truths:

No amount of dreaming was going to allow me to do what I wanted. No matter how much I thought I’d be able to continue, I couldn’t. As long as I refused to give up, my body was becoming more broken, crippled, and useless.

All these supposedly wise sayings about dreaming, desiring, and willing, no longer apply when the body fails us. We can only use the mind and spirit to overcome our limitations when our bodies cooperate.

When it’s working “normally”, we’re able to ignore our body and take its serviceability for granted, never doubting our physical ability to simply function in our lives. Yet this basic functionality is exactly what chronic pain and fatigue steal from us.

Our mind lives within, and is thus dependent upon, our body. When its neural, chemical, or electrical environments no longer function properly, the mind cannot simply overrule this physical reality. When besieged by chronic pain and fatigue, we are forced to struggle with even the most mundane tasks, whether they involve physical or mental effort.

No amount of desire or dreaming can eradicate or circumvent the unrelenting assault of chronic pain.

Angelika blogs on chronic pain and illness at EDSinfo.wordpress.com.

 

Authored by: Angelika Byczkowski

There are 6 comments for this article
  1. Old Texan at 2:04 am

    Ours is a fickle future… like a shark we must swim or die. Daily since childhood I have pushed back at the struggles that are inflicted upon us, it often seems like quicksand is swallowing us up and we must fight with all of our will to survive each day.

    I admit that I have not been able to have the strength to win each and every day and have admitted defeat and begged the powers that be to suck me under and end this charade.

    But, the powers that be will not comply and like a cat with a mouse seem to enjoy the sadistic game and enjoy prolonging the inevitable forcing us to continue to live when death would be more merciful.

    I enjoy reading your articles, and can totally relate to your position… I wish you the best for whatever may be best for you!

  2. marty at 5:26 am

    Thank you for sharing your story. I probably could have written it myself since it is so much like my own. Chronic pain has def changed me. How could it not. But we keep moving on praying that we make it thru each day.

  3. John-David Biggs at 4:16 am

    Dear Angelika,

    Though I help people with many kinds of chronic pain, I would not pretend to understand what it feels like, and thank you for writing about your extreme condition, nor would I suggest I could help you directly. But you might find some support or gain some insights if you wanted to join in my fledgling weekly webinar, designed to bring people together who have found are are searching for long lasting solutions to their conditions.
    It’s called the Wednesday Webinar – MS and Autoimmune, and chronic conditions.
    It’s on today or any Wednesday, and his hosted through the zoom.us webinar platdorm.
    Here’s the link if you’d like to drop in anytime, and your experiences may inspire others on their journeys.
    Here’s the link, which I think should do for any Wednesday, as its a regular meeting.
    Join from PC, Mac, iOS or Android: https://zoom.us/j/929989249

  4. Mark Ibsen at 8:54 am

    So sad to hear what you’re going through.
    You are right, the slogans you are using or have used aren’t working. I wonder what would happen if you picked some new slogans?
    There must be a way through this agony, but slogans that are meant for young football players do not effectively apply to the chronically Ill.
    God bless all of us with challenges that seem to have no obvious solution.
    Getting adequate pain relief would be a start, and I see that you and many others are thwarted.