New Guest Post - Shawn Sparks

On a roll here - this guest post is by Shawn Sparks, on the issue of dealing with chronic pain.

            Living with chronic pain is hard.  Period.  Normally, when one falls and sprains an ankle, it hurts.  It may hurt a lot, leaving one incapacitated for a period of time, and on crutches for a time while it heals.  One may even need anti-inflammatories and pain medication for a time to cope with the pain, again.. while it heals.  Most of the world deals with pain that will heal, they have an end in sight, so it's tolerable because it will, at some point, go away.  On the other end of the spectrum are people with conditions like fibromyalgia, who constantly experience intense pain that even I couldn't fathom. These people are understood by the medical world as needing constant relief from debilitating pain.  Those with conditions like Scoliosis and Parkinson's disease have outwardly obvious clues that they live in chronic pain.

I reside in the middle.

            I categorize my chronic pain level at a 3-4 on the common '1-10' pain scale.  That's every minute of every day, with a few exceptions from time to time when the planets align, and for whatever reason, the tendons, joints and bones all decide to take a break at the same time.  This is rare, I might add.  On the other end of the scale, I rate my worst moments at a 9.  I am certain that someone without my condition, or even accustomed to living with pain, would rate their experience of my most intense pain at a 12 or higher and would have a hard time coping with it at all.  I understand that it could always be worse, so I call it a 9.    

            Because I constantly live with pain, I have learned to cope with it fairly well.  I can walk when it hurts, and not show the world.  I can push myself to be active, knowing I will regret it later, but also wanting to experience life and not come to the end with regrets of not having done the things that excited me.  During these activities, I again have conditioned myself to ignore the pain and experience the pleasure of whatever it is I am doing.  This has been a hard thing to teach myself.  Some of it is mental training; for a time, I would consider that pain is just another sensation the body experiences, much like tickling, easing into warm water, or receiving a massage.  With this mindset, I am able to let my pain be there, but not be discomforting or distracting, just be there.  Believe me, this rarely works as fully as I just stated it, and is no way to deal with it when it flares above what is omnipresent.

            I recently had a dear friend who lived with Interstitial Cystitis take her own life.  I bring this up, because of anyone in her life, including her own parents, I understood.  I understood that she could no longer live in a body that was in constant pain.  She was dependent on pain medications, but the dosage she needed was only really available in the hospital, so she spent a better portion of her early twenties in the ER.  Because she did not have outward clues to her condition that caused her constant extreme physical pain, no one understood that such a young, healthy looking person could require such pain relief so frequently, if at all.  She, of course, couldn't live in an in-patient facility for life on a Dilaudid drip.  There is no cure for IC, and the treatments she would get could only last a couple of months, and even then, only reduce the pain, not make it go away.  Because she NEEDED such high doses of medication, she was labeled by her family as an addict and a junkie.  She was flagged at every local hospital as a drug chaser.  She could not get the relief that she needed, and made the choice to say goodbye.  I do not disagree with her decision.

            What I have found in myself is that I too am always seeking relief from physical pain.  Whether it's through mental tricks, prolothreapy, chiropractic or narcotic pain killers, I am addicted to those moments of relief.  I love them.  I cherish them.  I live for them.

            In my quest for relief, there was a period a year ago where I made the conscious decision to let myself take pain medication on a regular basis.  Morning, noon and night.  Norco with my morning coffee, and whenever I felt it wearing off, I would take more.  All day.  Every day.  I became physically dependent, but not oblivious; I knew what path I was headed down, and chose to continue.  For me, it was a trade off: live in a foggy-headed state, become slightly ill if I didn't have opiates in my system for 12 hours and be a little mentally slower in exchange for a period of time where there was little to no physical pain twenty-four-seven.  Ironically, this is also the period of my life when the woman I mentioned earlier showed up in my life.  What a pair the two of us made!  Through it all, I continued to see my chiropractor and prolotherapy specialist, and openly discussed my medicine use, as well as how each aspect of my treatment was affecting me, for better or worse.  They were conscious choices, and I discussed my decisions with my friends and family as well to try to circumvent some of the judgments that I saw happening to my aforementioned friend.

            When I moved from California to Texas, I was without insurance for a year.  This was a hard period, since I had set up a fantastic system of care for managing my pain, and not only did I move away from this support and care, but I also had no insurance to rebuild it in my new town.  During the period without insurance, I did the research on sports medicine chiropractors, pain management specialists, orthopedists and even found a prolotherapy clinic, but had no way of funding any of it.   Relief would have to wait.  Fortunately, with a little foresight before leaving California, I was able to wean myself of the opiates, stockpile some for emergency use and return to the mental battle with my pain.

            When my medicine ran out, I found myself seeking more, and had even more insight to what my friend was going through.  What I found myself doing was seeking pain medication wherever I could, and without visual clues for the world to see that I have a condition that comes with chronic pain, I would appear to be a drug seeker looking for pills to get high on.  In a sense this was true, but the high I was seeking was the high that comes when the pain subsides to less than overwhelming, not the high that those who don't understand living with chronic pain think we are seeking.

            After a year at my job, I finally transitioned from a temporary to a regular employee with benefits, and am able to get back to the chiropractor which is just as much a high as anything. However, I am again peering down that path of maintenance-level pain medicating.  I was able to get a prescription that has refills, and find myself taking a couple of pills at the end of the day to shake off the pain like many folks come home to a glass of wine to shake off the stress.

            As I consider my motivation for writing these thoughts, I understand that I am compelled to express that there are those of us in the world who live with pain in ways that the general public, our acquaintances, friends, doctors and even families cannot truly see or understand because we have no real visual clues to 'prove' that we are in physical pain every minute of every day, and sometimes we look to pain medication for some relief.  Sometimes it even gets us to a point where we do not seem disabled, and not in need of such things, but the world cannot understand that it's the medication that is helping us keep this facade of normalcy.    Sometimes we make the conscious decision to habitually take narcotics simply to reduce our omnipresent pain, and it's worth it.  It's worth the trade-off when you've spent decades in physical pain.  Just taking a little of the edge off is enough to justify the physical dependency, the foggy-headedness and the judgments that come from those same people who can't ever truly understand what living with a seemingly invisible disability is.

            In some of the circles that this may pass through, it will be preaching to the choir, and hopefully some of my thoughts help find familiarity with their own situations and not justify, but truly validate their own need for relief.  However, I hope most that it can reach some of the people with whom we interact with and help them understand where we may be coming from, and perhaps withhold judgment of our choices when we are trying to ease pain that they may not be able to see, but we have been experiencing for years, or even decades.

You can read more from Shawn over at the adults/teens with clubfeet group on Facebook - 

http://www.facebook.com/groups/24892886820/

And if you aren't already a member of that group, sign up! Many clubbies await your attendance!!