Tired, Tired, I Feel so Tired is a poem that I wrote during one of the flare ups of my chronic anemia in an attempt to express the deep fatigue that was robbing me of the freedom to live life to the fullest.
I recently read an article entitled, “No Fatties”: When Health Care Hurts by Carey Purcell which touched on the biases in care that fat people can face when seeking medical care. As I read the various stories of those whose pain had been ignored, sloughed off as the result of their weight, and sudden, unexplained weight gain being dismissed as nothing more than the result of eating to many burgers, I could not help but recall my own experiences with the medical community that have left me less than thrilled whenever it is time to visit the doctor.
The flurry of emotions raised by this article run strong and deep through my soul like a quiet river that with the slightest rain rises into a ragging torrent. Most days I quietly forget the pain, as I focus my mind upon the daily struggle to keep meaning and purpose in my life along with the battle that comes with living in chronic pain. But there are days that wound rises to the surface and the tears threaten to come rolling down. In order to silence the pin pricks of irritation at being treated as somewhat less than human, I have done the unthinkable in that I have to a great degree shut down the person I once was. I have allowed the battle to alter the course of my life and erase the dream I once cherished.
The change began with simple steps that were almost imperceptible. Little moves such as changing the channel whenever a medical clip or episode of a favorite show came to close to my own experience and threatened to touch a chord I would rather remained silent. Soon I was no longer watching once loved shows like Emergency, Mystery Diagnosis, Quincy ME, programs that had inspired me to hope that one day I might help the suffering and sick too, because to me they had become nothing more than idle tales. Ultimately it progressed to closing the books and shutting down my hopes and dreams of becoming a doctor or at a nurse practitioner.
Even though I had known for a long time that it was coming, the day it finally broke through my thick head that my dream was over, it felt as if my heart had been run over by a mile long bullet train running at full throttle. Tears filled my eyes as I looked down upon the pitiful remnants of the dream that been the driving force of my life since I was five, and finally admitted to myself that like Humpty Dumpty, all the glue in the world would not put it back together again.
I would like to say that when the truth finally knocked its way into my brain, that after a few hours of mourning, I rose from my bed of tears stronger, wiser, more resilient, and with a sweet calmness worthy of emulation. I would like to say that it was such, but sadly for days, weeks, even months I was touchy, moody, and at times only tolerable company as I grieved for the cavernous void in my heart that I had no clue how to ease.
With bitter sorrow I listened to every tidbit of the active world around me. The green eye of envy rising to the surface as I was barraged at every turn by fresh tidbits of my peers success until I dread to hear the phone ring lest it was some loved one sharing news with my Mother that they were certain would bring smiles of delight to our face. News that at other times might have only brought forth a dry smile and a momentary pang of longing that was easily smothered by the abiding hope that one day soon my Mother would triumphantly be able to declare that her daughter had finished premed or graduated from nursing school.
But now that the battle had been conceded, now that I had admitted that my life’s purpose had been defeated by the superior foe of chronic pain and misery, I was like a flimsy dot of a life raft lost at sea. Rising and falling on the storm maddened waves of uncertainty and loneliness and pounded by the beating rains of despair. Like a haunting melody the unforgiving wind declared that I was nothing but a useless blob, a worthless blood sucker sucking the life of my aging parents. With fiendish glee the flashing lightening and earth jarring thunder would announce that my future once so bright and hopeful was doomed to ignominy and failure.
During this bleak time my pain was made more acute as imaginary images of my frightful fate, terrorized my dreams and haunted the most peaceful moments of my days. Like the midnight sectors of Dickens strange Christmas tale, my eyes were tortured by the fearful realization that one day the comforting arms around me would be no more, and that I would be left pale, friendless, and jobless to face a future wandering the streets begging for the stale crumbs of human sympathy.
When I was in high school, one of my favorite weekend activities was to play Monopoly with my Mother. If it were not for homework and household chores my Mother and I would have played the game all day. We loved going round after round, hoping and waiting for all the properties to brought up so we could make our exchanges and build our hotels.
As I look back on those enjoyable mother/daughter afternoons, I remember that despite nearly always loosing the game, I would have such fun. But there was always a low spot (not counting my nearly perfect record of landing on Park Place or Board Walk after it was brought), that made my heart tremble. And that was landing on the community property space. There were so many dangerous cards to chose from such as pay poor tax, pay school tax, or the dreaded hotel and homes tax.
But one bright spot to the day was the unexpected joy of lifting up the card and discovering that I had chosen the get out of jail free card. That wonderful card which would allow me to get of one jam without having to pay a penalty and having to fork out 50 dollars that I did not have.
As I think about it now, I imagine that to some people it must appear like I or any other chronically ill person has managed to land on community property and by the luck of the draw pull out this special card. This wonderful card that allows us at any moment to get out of work, chores, and any other unpleasant life duty. To many it may seem like if something is too boring, to demanding, to exhausting, dirty, disgusting, stressing, etc we get to pull this little ace from out of sleeves and declare that we are now privileged to get out of work and got and do the things that we really want to do.
The past few weeks have not been my best. I have been caught in the throws of a miserable flair up that has left me feeling cold, tired, and painful. To add to the misery my digestive system has been under constant attack so that some days my appetite drops to nearly nothing while my weight has increased.
Fortunately even in some of the most miserable times, if you look hard enough, you can find something to be grateful for. For me that has been the constant support of my family and my sweet little pup Happy who I sometimes get the unnerving feeling actually likes my sick days because when I am sick I end up camping out on the sofa where he can spend the day curled up on my lap.
Something else which has brought a smile to my worn face is the beauty of several hibiscus plants which have spent the last several weeks in bloom. Greeting me with their gorgeous blooms as I take my short backyard stroll. They have been a source of comfort and joy reminding me that even though there are moments that I tempted to think that life is nothing more than pain and misery, there is a great deal worth smiling about if only we open our eyes and take a good look at the simple wonders all around us.
I know that it has been quite awhile since my last post. I have wanted to post for quite some time, but have been enduring a rather strong flare up that has left me curled up in a tight ball for days on end. Leaving me little time to accomplish important task like helping with the dishes or assisting with the family budget. By the time I was ready to log onto Word Press my small bank account of energy had been overdrawn and it was not long before I had to turn off the laptop and curl up in a tight ball once more.
The past few months have been far from easy. Filled with long days of pain, fatigue, miserable migraines, the intense body chill of Reynolds, and a slowly increasing heart rate it seemed at times like someone pressed the pause button for my life. Though it has not been easy, I had one great comfort. The sustaining trust that I was not going through the hour of trial alone. My confidence that every groan, every ache, every tear of misery had been marked by Jesus.
In those long hours of suffering I found myself often thinking of what it must have been like for Jesus during those last few hours before the cross. My iron low leaving me cold and struggling to get the strength to walk the few feet from my room to the sofa, I wondered how after being beaten multiple times and having already lost a fair quantity of blood, Jesus endured what must have felt like an eternal walk from Jerusalem to Golgotha. Then, weak and in great physical pain he was hoisted upon a crude cross.
Thanks to another flare of my iron deficiency anemia I have not only been enjoying a debilitating bout of fatigue, chills, and ghost pale skin, but I have been dealing with another round of vegetarian pica. Vegetarian pica is a term that I created to explain my sudden desire for and acceptance of meat when my iron takes a rapid plunge. Having been raised a vegetarian, I had no taste of desire for meat. Growing up the idea of consuming the dead body of a sad faced cow or chicken had no appeal to me. I much preferred my vegetarian hot dogs made of unfeeling soy than the ground up body of a once living and breathing animal.
Due to a miserable infection I have been unable to write for the past few weeks. I knew for a month that I was developing an infection but it was one of those cat and mouse type of infections that left me miserable one day, and the next the symptoms seemed to subside. My nasal cavities felt miserable, but the pressure was too mild for me to go to the doctor and confidently declare that I was having another sinus infection.
Then a couple of Sunday mornings ago, I woke up with a full fledge infection. I was dizzy, feverishly achy, had a miserable head ache, and my sinuses throbbed like base drums. At that point I was more than confident that I had an infection and was eager to go to the urgent care and bring an end to my misery.