Frankly, I Don't Give A *$%!!

I recently found myself in the awkward position of trying to explain to someone near and dear to me why it was I was unwilling to commit to an engagement three weeks ahead of time. She would not accept my "no" but rather adamantly advanced her agenda--that of getting me to attend a meeting "that would change my life for the better."

Clearly she was not listening to me, hell-bent on racking up points for netting a new member for her organization du jour. But in all fairness, I accept some of the responsibility for our frustrating conversation. Perhaps I was not speaking clearly. Maybe I was being too diplomatic. But in all honesty, I was afraid to out myself as a fibromyalgia sufferer.

I was too embarrassed to admit that I function on finite energy and when all the energy I have on any given day is spent, I have no reserve from which to borrow. I was too much of a coward to acknowledge that the daily pain with which I live requires my best energy to manage. I was too proud to acknowledge that the overachieving, success-driven, self-actualizing woman she once knew had retired her superwoman tights and cape long ago. Now my favorite outfits consist of silk pajamas, fuzzy slippers, and a heating pad.

I didn't tell her that I'd rather spend time listening to birds sing or the ocean roar than listening to a motivational speaker pump up an audience; that I'd much rather spend a quiet evening laughing and talking with her than sharing the details of my life with a bunch of people I do not know. I did not tell her, "Frankly, I'm not looking for new friends, new projects, or new inspiration," though I wish I had.

Indeed, I wish I had told her,"If you really want to help improve my life, come on over and finish bringing in the groceries from my car. Better yet, offer to go grocery shopping for me!
Take the overdue books back to the library. Maybe you could bend down and pick up the shells that FuBu knocked off my desk. Would you be willing to brush Mookie's coat? How about vacuuming the carpet for me? You want to help improve my life? Gift me with a weekly maasage for a month. I'm pretty sure that would provide a tangible improvement to the quality of my life."

At 3:00 in the morning, I regretted that I had not said any of those things. But in the light of the day, I realized: Why expend the energy? She wasn't listening anyway.

Pain, Pain, Go Away: Dealing with Chronic Pain

I knew last week when I mentioned I live with chronic pain, I would receive a lot of inquiries. I heard from several fibromyalgia sufferers, people like myself, who seriously need the support of others who deal with this mysterious ailment and desperately want the compassion of others.

I also heard from the curious, the stoic, and, the cynical, those who believe fibromylagia is just the syndrome du jour of yuppie middle-aged women. And so it is when you reveal an uncomfortable truth about yourself. People have questions. Some have doubts. All need information.

So this week, I am going to address the innocent, yet frustrating, refrain: "You don't look like you are in pain."  Earlier this evening, I went in search of a pictorial depiction of pain. I wanted to see that which I obviously do not resemble. Here is what I found...the ubiquitous pain chart many hospitals give patients after surgery or other painful procedures to assist us in describing the undescribable.

Okay, so we all can agree, there is no resemblance between YaYa and the happy faces gone awry above.

The faces actually have some credibility; its the verbal descriptions that are an insult to anyone struggling to function with pain. Who is going to take seriously: "I hurt a little bit"? Who is going to prescribe a pain killer for: "It hurts a little more"? When does "It hurts even more" become "It hurts a whole lot"?

Years ago, my Mom, a nurse, taught her children certain words to help explain unpleasant body sensations. We learned terms to describe degrees of discomfort. I seem to remember words like: "soar, achey, throbbing pain, burning pain, and stabbing pain." All of which, by the way, can describe fibromyalgia, along with the phrase "electric shocking pain" which is my term for the neural pain that can accompany this disorder.

Pain is such a subjective phenomenon, and there does not exist a universally accepted chart that accurately depicts everyone's experience. I did discover a verbal explanation that sufferers could find helpful. This pain scale, designed by Andrea Mankoski, is considered useful in describing the severity, if not the quality, of pain.

(Whenever a medical professional  asks you to rate your pain from 1 - 10, ask for a pain scale so you can be sure you're speaking the same language.)
 
0 - Pain free
1 - Very minor annoyance - occasional minor twinges.
2 - Minor annoyance - occasional strong twinges.
3 - Annoying enough to be distracting.
4 - Can be ignored if you are really involved in your work, but still distracting.
5 - Can't be ignored for more than 30 minutes.
6 - Can't be ignored for any length of time, but you can still go to work and participate in social activities.
7 - Makes it difficult to concentrate, interferes with sleep You can still function with effort.
8 - Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.
9 - Unable to speak. Crying out or moaning uncontrollably - near delirium.
10 - Unconscious. Pain makes you pass out.

Throughout the year, depending on such things as the weather, my workload, my level of physical activity, my weight, my mental health, the stress in my life, and the quality of my sleep, I fluctuate between six and eight on this scale. 

Since so many people are visual learners, I have made an effort to show you my pain levels. To do so, I solicited the help of a familiar cartoon character: Wile E. Coyote(WEC).

1. WEC reading a book = I feel fine.


2. WEC holding a  help sign = My head, neck, and shoulders are aching and burning; I am waking up frequently during the night due to the discomfort.







3. WEC with mousetraps attached to his
extremities = I am hurting everywhere;
sleep is painful and sporadic. I know my pain
will increase because the quality of my sleep is decreasing.

 

4. Boulder crashing down on WEC's head = Heavy fatigue has set in. I am experiencing "fibrofog"--difficulty thinking and concentrating.



5. WEC is crashing = So is YaYa. My hips and legs throb; I feel dizzy and nauseous from the fatigue and pain. A fibromylagic flare-up is in effect.

6. WEC experiences a complete crash and burn =  Unfortunately, once I have a full-fledged flare-up, I   do not know how long it will last--sometimes weeks, sometimes months.  Luckily, with a multi-pronged approach to treatment, I am able to keep my fibromyalgia in check most of the time. Some  patients must stop working if their flare-ups persist and worsen.  
                                                                               

Next week: Dancing to the beat of a different drummer.

              

A Delicate Balance

A visitor recently questioned me about the stacks of river rocks he saw throughout my home and on the balconies.

"What are these," he asked in a curious little boy kind of way.

"They're rocks," I replied.

"Yeah, but what are they for?"

For a moment I was stumped.

I have used these smooth stones to adorn my space over the past few years, after once seeing an impressive number of them along the perimeter wall of a local beach. Stones, washed up from the sea, not of uniform size, placed precariously one on  top of another. They spoke to me then; they speak to me now.

Each stack is a testimony to aspects of life: the startling beauty of nature in its nakedness; the power of turbulence to shape, smooth, and polish the rough and rugged; and the harmony present in simplicity.

 Lately, these rock altars have reminded me of the balance which has become the essential tempo of my life; for, I live with a chronic illness that drains me of energy in a minute, visits me with pain for hours, and can rob me of sleep for nights on end. I am one of 10 million Americans who suffer from fibromyalgia, a chronic pain disorder characterized by:
                                                    
                                                too little energy
                                                    on top of
                                       impaired memory and concentration
                                                     on top of
                                        not enough restorative sleep
                                                    on top of
                                   widespread musculoskeletal aches and pain
                                                    on top of
                                              soft tissue tenderness
                                                     on top of
                                     too many mental and physical demands

Each day, I must strike a workable balance between these asymmetrical elements of my physical world and the desires of my spirit for inner peace, love, joy, and acceptance.

My stone altars are a testament to what a delicate balance that is!