Lydia 2, Fibromyalgia 0

Taken by LKW in Sante Fe, New Mexico

For far too long, fibromyalgia, and the accompanying pain, has dominated every aspect of my life. Not only did it force me to stop doing one of the things that I loved, that is, being a trial lawyer, but it also led me to take an involuntary hiatus from my life. In the last 1-1/2 weeks, I realize that I am eager to retake the life that I am meant to live.

When I stopped practicing law, and took disability, I never knew how I would feel from one day to the next. For that reason, I stopped accepting invitations from family or friends, for fear of disappointing them with my all too often declinations or cancellations. After a while, people stopped asking me, and I didn’t blame them for it. I mean, if I had a quarter for every invitation that I’ve declined since I dropped out of life, we would be wealthy, by any standard.

Although I didn’t intend to, I made myself a prisoner in my own life, and it became the norm. I also stopped traveling, even short distances. With the exception of trips to California to visit my daughter and her family, I declined most trips that were less than a few days in duration. Over time, I learned that if I were to travel, it required careful planning.

The main question to consider is the mode of travel: ground or air. I’ve learned that it is most important to chose the one that will get me to my destination with the least amount of stress and pain to my body, mind and spirit. In general, air travel is preferable because I can reach my destination faster, and I can get up and walk around much easier. Car trips lasting no more than 45-90 minutes are also doable, while I must avoid longer ones.

I’ve learned that the longer and more rigorous the travel schedule and mode, the longer the time that my body needs to recover from the effects of the trip. Although it does not eliminate my need to recover, air travel has less of a negative impact on me overall.

In recent weeks, I’ve also discovered that no matter how inexpensive Megabus, and others like it, may be, bus travel over long distances does not agree with fibromyalgia and chronic pain condition. My elderly Mom and I wanted to celebrate a pivotal birthday with one of my sisters. My Mom is at an age that she refuses to endure the added stress and demands that TSA, and other security concerns, places on air travel. So, in order to allow her to make the trip, I agreed to a bus trip from Austin, Texas to New Orleans, Louisiana.

Well, I am here to tell you, I can say that I’ve been there, done that, and I never will do it again. I would still consider it for trips of no longer than a few hours. Less than a day after we returned from New Orleans, my husband and I joined friends for a three day trip to Sante Fe, New Mexico.

The very fact that I agreed to either trip is out of the norm for me. As I mentioned earlier, with the exception of trips to my daughter in California, I rarely accept invitations to travel long distances. In fact, when my husband asked if I wanted to accept the invitation to Sante Fe, my initial inclination was to say, “No!” Nevertheless, I hesitated, and before I could stop myself, I agreed.

I surprised myself, and the look of astonishment on my husband’s face was priceless. My only regret came when the date of the trip had to be rescheduled to take place within days of returning from New Orleans. My concern was that there was little to no time for my body to recover between trips. Nevertheless, I was determined that, for once, I was not going to back out of the trip, no regrets allowed, and fibromyalgia and pain be damned.

As I write this post, both trips are behind me. During the trips, my pain did not magically disappear, nor did I expect it to. The lack of sufficient recovery time between trips, and insufficient recovery time post-travel was definitely a problem, though not an insurmountable one. Also, I think that it led me to catch a bad cold from my poor husband who spent the ENTIRE trip in bed with the flu.

Although all did not go as planned, I managed to hang out with our friends, Julie and Jeff, and to enjoy the beautiful adobe family home in which we stayed. It was within walking distance of the main cultural arts district, which I loved. I also enjoyed a couple of local restaurants, and to experience a little bit of the Sante Fe vibe. I look forward to going back.

In hindsight, both trips leave me feeling as though I am on a journey towards beginning my life anew. Post-trip, I must acknowledge that fibromyalgia definitely impacts what and how much I do. My pain level is inarguably much higher than it would be had I remained home. Yet, I was out experiencing and living my life instead of viewing it from the sidelines.

For once, fibromyalgia forced me to become a spectator in this thing called life. Life is to be experienced interactively, and it is my intention to do so. I am not saying that I will accept every invitation or opportunity that comes my way. However, I am going to engage in as much of life as I can taking my physical limitations into account. I have already agreed to a trip to Paris and Florence with my daughter early next year.

I like the following quote by Zachary Scott: “As you grow older, you’ll find the only things you regret are the things you didn’t do.” Over the years, fibromyalgia and pain has caused me to regret having missed out on so many things, but no more. I’d rather create memories borne of the magic and beauty that this life offers.

What about you? Do you have an illness, condition or something else that keeps you from living your life to the fullest? If so, please join me in regaining your power, and all that you are. As they say, life is meant for living, so let’s do it.

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.  

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The Long Lost Memory

Pen & JournalImage by Bob AuBuchon via Flickr
Early this morning, as I opened the Harry Potter book that I was re-reading, I discovered two pressed flowers–one a ranunculus and the other, a petite red rose. From their condition, it is obvious, that I’d placed them there some time ago. After appreciating their beauty, I began wracking my brain to recall the circumstances that led me to place these flowers in this book. When? Why?

I have purchased hundreds of flowers over the past years, and there was some reason that I pressed and saved these particular flowers. Perhaps they were especially beautiful; perhaps they held some special meaning to me. What is it? Where is it?  I can not remember. Is the memory buried so deep in my subconscious mind that I cannot easily extract it, or is it, as I fear, that the memory is gone, a long, lost memory, never to be remembered, that special meaning forever lost? Gone to rest where all lost memories go.

I was lost in thought thinking about my life and all of the things that I have done, and people that I have met, knowing that some of these memories are forever lost to me. It saddens me to know that there will come a time when my future self may forget the import and significance of any number of today’s meaningful moments. This is further punctuated by the fact that I have holding over my head, testing to determine whether my “memory issues” are due to the medications that I take for my chronic pain condition, or something much more sinister. Although the testing still scares me a bit, my faith allows me to feel somewhat positive about the outcome, whatever that may be.

The happenings of my life, big, small and seemingly insignificant, form my memories.  Those memories remind me of the trials, tribulations and circuitous routes that I have taken to become the person that I am now, as well as the person that I will become.  They comprise the sum of who I am and I don’t want to forget them. If I do, I lose bits and pieces of me. 

Over my lifetime, I have journaled intermittently, but consistently for more than ten years. Within a matter of hours, my journal has grown from one of those things that “I should do” to something that “I must do.”  It is now my historical record of the sweet, special and important memories in my life, so that in the  future, I won’t be mourning the loss of a long lost memory. It will have to do.

Blessings and peace,
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