National Fibromyalgia Awareness Day

 

Today is National Fibromyalgia Awareness Day. Why do I care? I have fibromyalgia.  I’ve lived with it for over 20 years. It took away my career as a litigation attorney, my zest for life, my direction, my passions, and so much more. It brought me, among other things, constant fatigue, insomnia, depression, anxiety, foggy thinking, decreased cognitive function, impaired memory and concentration, and debilitating pain. Mind you, the symptoms vary from one person to another, but the bottom-line is that they change the person you were and as a result, your life.

When I created this blog, I choose not to make it about my fight with fibromyalgia, but one about my journey as a seeker determined to excavate my inner self as a means of unearthing my true self. I am determined to reclaim my life, tranquility and sense of self. Although I have discussed it in this blog, it is rare that I discuss my battle with the disorder. I prefer not to welcome the pity that often results. Nevertheless, the disorder is greater than me, and it is more important to educate people.

What is fibromyalgia? This post will not go into every excruciating detail about the condition. If you are interested in that, I urge you to go here. In brief, the website for the National Fibromyalgia Association (NFMaware), sums the condition up as follows:

“Fibromyalgia (pronounced fy-bro-my-AL-ja) is a complex chronic pain disorder that affects an estimated 10 million Americans. While it occurs most often in women, it can occur in men and children, and all ethnic backgrounds. For those with severe symptoms, fibromyalgia (FM) can be extremely debilitating and interfere with basic daily activities.

The symptoms range from, among other things, insomnia, memory and other cognitive impairments, lack of concentration, digestive disorders, to debilitating pain, overwhelming fatigue, isolation, depression and anxiety. As it affects so many people, it is more likely than not, that you know someone with the disorder.

Although there are medications to treat it, treatment is largely haphazard and by trial and error. Because no two people display the same symptoms, it is difficult to formulate a one pill treats all formula. I’ve tried countless treatments, both conventional and  non-conventional, but the beneficial effects are fleeting.

Personally, the pain is my most formidable foe. It is my constant companion, and what ultimately led me to stop practicing law. I was a good trial attorney and I loved my job. I was an Assistant Attorney General for the State of Texas and, like everyone else, my caseload was heavy and stress was the norm. As a trial attorney with an active practice, I was in constant contact with clients, opposing counsel, the courts and witnesses.  As a litigation attorney for the state, I travelled constantly, tried cases throughout the state, appeared in court, interviewed clients and witnesses, researched, read endless documents and case law, and wrote one document after another — all with no problem. I moved from one case to another, remembering case specific facts and issues with the greatest of ease.

About two years before my resignation, pain became one of my primary symptoms. In order to perform my job to my own high standards, I had to increase the pain medication that held the pain in abeyance. Still, over time, the pain increased such that I was unable to concentrate. In meetings, I would zone out. During client and witness interviews, I would lose my train of thought, ask witnesses to repeat themselves and forget where I was in the course of the interview. During depositions, I would confuse cases and as a result, the facts and issues, and most troubling for a trial attorney, the same thing happened in court, during hearings and in trial.

Reading case law and documents, and writing, is inherent to a litigation practice, and doing so became interminable. Documents that previously took me a few hours to write, took days. I would find myself reading the same paragraph over and over, still not fully comprehending what I was reading. Preparing for trial became an arduous task. Travel was painful — literally. As soon as it was possible, I’d rush to my hotel room, collapsing in bed, in too much pain to eat. During trial recesses, I’d rush to the benches in the back of the courtroom, to lie down, if only for five minutes.

Mentally, I went from taking things five minutes at a time to one minute at a time. I thought that if I could get through the next minute, all would be well. Although I tried to deny it, the day came when I had to admit that I was no longer able to do my job, not in a way that was acceptable to me, and after a six week leave of absence, I never returned. Without going into detail about the aftermath, suffice it to say that my life spiraled out of control. I was a mess, physically, mentally and emotionally. Though it was the second hardest decision that I’ve ever had to make, I applied for disability.

These days, I can’t work. Even though I take obscene amounts of pain medications, I still experience pain daily. On the subjective pain scale of 1-10, the typical day finds my pain level hovering around 5. Unfortunately, there are too many days in between, when it reaches a 9 or 10. Those days are the worst, because all that I can do is suffer through them. As I write this post, my pain is about a 7 and climbing.

Isolation is also a problem. When I first stopped practicing law, I withdrew from friends and family. I thought that it was to protect them from my condition, but I’ve come to see that it was to protect myself from their pity, discomfort and inability to understand what I was going through. In reality, I built a prison, from which I still struggle to free myself. Yet, the future looks brighter.

This is my story, and although it is but one, it’s a start. My goal in writing this post, was to educate. If I reach only one person, I am satisfied.  I ask that, if you feel compelled, do share it with others.

If you know anyone with the disorder, I urge you to reach out to them. One need not have the disorder, to empathize. The most important thing is to make a connection, not out of pity, but from a place of love and compassion. It will help ease even the worse symptom.

I know that this is not the most sexy topic, but if you have made it to the end of this post, I sincerely appreciate and thank you.

postsiggie2

But, You Don’t Look Sick

“Dear God, I want to thank you for being close to me so far this day. With your help, I haven’t been inpatient, lost my temper, grumpy, judgmental, or envious of getting one. But, I’ll be getting out of bed in a minute, and I think I’ll really need your help!”

I stumbled across this prayer while reading a Kindle sample of the book “You Don’t Look Sick: Living Well With Invisible Chronic Illness,” by Joy Selak and Dr. Steven Overman. The prayer was sent to Ms. Selak by a friend with fibromyalgia–a condition that I know well.  Nevertheless, neither fibromyalgia patients, nor any group for that matter, can stake any special claim to this prayer, as it has universal appeal to each and every one of us.  Anyway, the prayer, though humorous and most mornings, all too appropriate, is not the real reason for this post.  


In November 2010, I began a blog post titled “You Don’t Look Sick,” much like the title of the book.  The post was in response to yet another “but, you don’t look sick” encounter that occurred earlier in the day.  In that particular encounter, I was just getting out of my car at the grocery store where I’d stopped to go to the pharmacy. Before I could get both feet on the ground, a woman, that I did not know, violated what any reasonable person would agree was my personal boundary.  One of the store managers sheepishly stood behind her. (I knew him well.)  Pointing her little bony fingers in my face, she said to him, “See what I told you. She is one of those people illegally parking in spaces reserved for disabled people.” You see, in my haste to get to the pharmacy, I’d forgotten to put up my hang tag. Dennis, the store manager said, “Lydia,  would you please use your hang tag?,” and he turned around leaving me to deal with the still unsatisfied and irate woman. 

She proceeded to accuse me of illegally parking with someone else’s reserved  parking hang tag and threatened to call the police and more.  I made a sincere effort to calm the lady, but there was no reasoning with her.  Finally, she uttered the words that I’ve heard time and time again, “You don’t look sick!” so that tag cannot be yours.” At this point, my patience and attempts at reason were spent and I slammed the car door and stormed into the store, before I said something that I’d surely regret later. 

Long after I returned home and the immediate sting of the incident had passed, the woman’s words continued to reverberate in my mind. I have no doubt that there are those who will read this post and consider my response as unjustified, overly sensitive, and in the category of ‘making a big to-do about nothing.’  For those without an “invisible chronic illness” or with no contact to one who has such as illness, it is often difficult to understand what it is like for those of us who do.  I mean, who can blame you when there are patients who are still confronting doctors who refuse to acknowledge their condition because it cannot be substantiated by x-rays, CT scans, MRI’s, blood work or any other means of diagnostic tools.  The underlying message becomes, in order to be deemed “sick,” there must be objective evidence supporting your illness; for example, a broken limb or a bald head (indicating a potential chemotherapy recipient or cancer patient).  The problem is further compounded when pain is the primary symptom because there is no objective way to measure it. 

On its’ face, “you don’t look sick,” (often with the emphasis on the word ‘look’) is seemingly innocuous and usually said with no malicious or bad intent.  Nevertheless, to those of us in the throes of a chronic, invisible illness; this otherwise harmless statement, raises yet another obstacle in the fight against the illness. If wishes were true, I’d gladly turn over both the hang tag and the parking space.  


Enhanced by Zemanta

The Day After

You're my blue skyImage by bella lago via Flickr
I lay awake with a blanket over my head. I can already tell that it is going to be a beautiful day because of the sunlight pouring through holes in the blanket. I don’t talk. I don’t move. For more than an hour, I just lay there, perfectly still, like a horizontal statue, listening to the voices of my husband and mother as they talk in another room. After a while, my body is stiff from not moving, so I uncover my head to take a look at the beautiful day that beckons outside my window. From past experience, I know that there is no certainty that I will have an opportunity to enjoy this day.  Fibromyalgia (fibro) has no respect for deep blue skies and sunny days, holidays, birthdays or other special days.  Fibro works on its own timetable, with no concern for my wants or needs. So, it is with trepidation that I work up the courage to test my body, to see if this latest skirmish with fibro pain has run its course; to see if pain will rule on this beautiful day. So far, so good as I gingerly step from the bed and into this beautiful day.

Blessings, peace and happy holidays, lydia marie

Enhanced by Zemanta

Lesson From A Eulogy

224/365Image by CR Artist via Flickr
As a lover of books, there are tons of them on my “read someday” list.  Last night, I choose a book from that list and within the first 10 pages, I knew that it is one of those books that will stay with me forever. I will  come back to it again and again for its’ many lessons. Unfortunately, I am, as my Mom used to say, “hardheaded” and it takes me numerous attempts to accept even the most integral lesson. If you are interested, as I am, in living your life to its fullest, perhaps this book can offer you some wisdom. I encourage you to buy or borrow this beautiful and inspirational book. 

By now, you are probably thinking, “What book?” The book is Patricia Digh’s “Life is a Verb: 37 Days to Wake Up, Be Mindful and Live Intentionally.” http://goo.gl/WB1d. Ms. Digh intends the book as a guide to “living each individual, glorious day with more intention,” however many days you have left in your life. The book reminds us that we are meant to be active participants in our lives, not passive bystanders watching our lives flash before our eyes. Who among us, couldn’t use such a reminder every now and again? But, what insight did I glean within the first ten pages? It came via a eulogy. 

Ms. Digh wrote about a dear friend who was told that he had only a year to live. All that we know about how he lived that year is through a, seemingly close, friend’s eulogy. As an attorney, I should jump up and shout, “Your honor, that is double hearsay,” but this is not the courtroom, this is the real world and for personal reasons I can assure you, this passage left me deep in thought. I can imagine the speaker, standing before a large group full of people, saying these words about his recently departed friend:
“He continued to live the very life he had been leading before his illness. This was his life. His account of his days, his heart of wisdom, lay in the very passions and commitments which he embodied daily. Day by day, this determination not to run away from his life took more and more courage. The pain increased. The exhaustion mounted. And yet, just three nights before his death, [he] was still in the classroom, still reaching out to others, still using every bit of his energy to make the lives of others better.” http://goo.gl/WB1d.
The passage was so striking to me, because it was so contrary to how I handled my own illness after I had to stop working over six years ago. Before I get to the after, perhaps I should explain how I came to stop working.



Fibromyalgia caused me to halt my active litigation practice. I believe that I’ve had fibromyalgia since 1996, so it has been with me for quite some time. For those unfamiliar with fibromyalgia, it differs from one person to another. 
“In trying to explain fibromyalgia, the American College of Rheumatology uses an effective analogy. They say that for the person with fibromyalgia, it is as though the volume control is turned up too high in the brain’s pain processing areas. Consequently, they endure chronic pain across much of their body, despite no evident source of that pain, in addition to a wide range of other symptoms including chronic fatigue and muscle soreness.” http://www.myfibro.com/what-is-fibromyalgia.

If you are interested in more details about fibromyalgia, please refer to “What is Fibromyalgia” link on  the home page.


By 2004, the pain became such that enduring it one day at a time became, after a while, one hour at a time. Later when that too became too onerous a time frame, my mantra became “if I can just get through one minute at a time.” The pain was unrelenting, and none of the doctors, medications, or alternative therapies were of any benefit. There came a time when one minute was far too great a goal to meet, so “one second” became the new target. Of course, it goes without saying that my time finally ran out, and I could no longer hold on. I had to stop working. In hindsight, that is the day that I stopped the fight and surrendered to fibromyalgia.


The man from the passage in “Life is a Verb” died, but he died as he lived, participating in his life, not running away from it.  I, on the other hand, though in comparison, blessed to have a chronic illness and ever more fortunate to live through a recent diagnosis of a bilateral pulmonary emboli, can I say the same about me?  The answer is a resounding “no.” No, I ran away from my life thinking that doing so would distance me from this illness, from the pain, but as Jon KabatZinn aptly states “wherever you go, there you are.”


The eulogy provides me a framework for living life in spite of my illness. To my knowledge, there is nothing in the “Dummies” series on how to deal with illness. Fibromyalgia has been an anchor around my neck for so long and I’d allowed it to drag me to the deepest, darkest depths of the ocean, far away from life as I knew it.  For me, the meaning of the eulogy is clear, living a full, intentional and meaningful life and illness are not mutually exclusive. It is possible to have both. I am ready to live my life, illness and all. I am not running anymore. I’ll be right here.


If we remain open to them, the opportunity for a lesson learned may well be found in the most unexpected and unlikely of places– even a eulogy.


Life Is a Verb: 37 Days to Wake Up, Be Mindful, and Live Intentionally


Wherever You Go, There You Are (ROUGH CUT)


TAKE NOTE: Links to Amazon go to my affiliate account, which means I make a small commission if you purchase the book through that link.

Enhanced by Zemanta