My Story: Chronic Pain Behaving Badly

My Story: Chronic Pain Behaving Badly

Angela Byczkowski

Angelika Byczkowski

For those of us suffering from chronic pain, it’s like carrying the burden of an uncontrollably noisy, spitefully unruly, and perpetually cranky toddler wherever we go, whatever we do. It simply cannot be ignored.

No matter what we’re doing or where we are, it can erupt in a tantrum, by circumstance or accident, foreseeable or unpredictably, and we are utterly at its mercy. It constrains our activities, interrupts our peace, limits our social lives, and results in nothing but grief, apologies, and feeble explanations.

Chronic pain comes to rule our lives by its sheer obnoxious intrusiveness, derailing all our plans and desires, exhausting us with its incessant demands, sending us on an endless (and often fruitless) quest for relief.

Pain rampages through our lives vandalizing everything we value, and often overwhelms our ability to cope. It becomes difficult to follow our hearts when pain is constantly grabbing at our sleeves, saying: “Wait a minute – what about me?”

Of course, we’d like to say: “Yeah, what ABOUT you? Just leave me alone, I’m busy.” If only that worked.

Pain is like a troublesome two-year-old who has just learned the word “NO”.

Fascinated by his ability to stop all forward progress, he learns to use the word at the slightest provocation, a habit that becomes so deeply ingrained, that a “no” will sometimes jump out without him being entirely sure why. But then, of course, he must stick with it, defend it, and insist on it as a matter of principle.

Parents are comforted by knowing cranky toddlers will grow out of it, but not so with pain.

In fact, those “No’s” only become more strident and disruptive:

No, you cannot drive 2 hours to visit family.

No, you cannot clean house before your guests arrive.

No, you cannot go hiking like you did just a month ago.

No, you cannot go see a double-feature movie with friends, or go dancing, or to a street fair, or to a concert with them.

You can’t go anywhere with anyone if you won’t have complete control over how you’ll appease the pain in your body. You must be able to move as little or much as your pain insists, keep yourself in the right positions for the right amount of time, rest frequently, eat and drink just when and what you need to fuel your body, all at a pace conforming to the energy levels of the moment.

At its most extreme, this means giving up on an activity entirely and taking your body with its screaming pain HOME RIGHT NOW. Because home is where we build our nests of comfort and security.

Over long experience with the idiosyncrasies of our own pain, we learn how to build a cozy space for relief, usually involving a soft bed or couch, many pillows of various sizes arranged in special configurations, several blankets to chose from, ice packs of different shapes, various wardrobe selections, and exactly the right herbal (or not) hot or cold beverages to suit the particular crisis.

If the pain is really bad and we’re really lucky, we might even have a muzzle for this screaming toddler in the form of effective medication.

Our nest becomes our sanctuary and salvation. Though it cannot save us in the worst circumstances, we can generally relax there and allow our pain to calm down and drift off into a less intense sensation. Like a cranky two-year-old we’re trying to pacify, we put it down in a familiar, temperate, quiet environment, and then begin the agonizing wait for it to fall asleep.

This is an all too familiar vigil for pain patients. We wait for the pain to unwind, to finally drop off to sleep, or at least to slip into a fitful doze; we wait for time to pass so the remedy can take effect; we wait for, hope for, the anticipated relief to arrive… eventually. And sometimes it does.

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

 

Authored by: Angelika Byczkowski

There are 6 comments for this article
  1. Debby at 7:03 pm

    I love your wording on this..you explained the pain and the expectations so well. I also feel like I’m full of shards of glass with infections running through my body…Be well, everyone.

  2. Jane Langer at 2:33 pm

    You described it so very very well!!

  3. Cynthia at 2:08 pm

    Thank you for putting it into words so eloquently. I feel a little less alone today thanks to you.

  4. BirdLoverInMichigan at 7:49 pm

    “…and allow our pain to calm down and drift off into a less intense sensation.”

    Isn’t that the sweetest gift we with Ehlers Danlos Syndrome, or similar chronic pain conditions, get in the course of our difficult days? It’s a sad, short-lived and yet wonderful experience.

    I think this essay can vividly explain what it’s like to live with our invisible and fatiguing suffering to at least some of those who rarely experience pain and can’t remember much of it anyway. After all, how can they understand what we feel? But people who are parents surely can relate to the pressure of dealing with a needy child. This is something definitely worth reading, especially for the skeptics and naysayers who can’t understand what it’s like being us. If I were queen, I’d make this required reading for everyone who’s a medical professional or a Social Security Disability judge. In fact, I’d put THEM at the top of the list.

  5. Grame at 10:57 am

    I do believe you’ve read my mind. Beautifully expressed.