I understand I have to live with you forever from now on. What I don’t understand is why I must be the one that informs everyone, family and friends, and doctors about how I feel while living with you. Why it is my job to tell others about the latest research that might assist me in accommodating you? You, my host who lives and thrives inside my body, shouldn’t you take some responsibility since you entered me? I am exhausted just from learning how to join our lives into one entity.
You entered my brain, joining in my cognitive abilities. You live within my central nervous system and inhabit my muscles and connective tissues. Despite entering into all three of these areas, you choose not to speak. Not to offer up a clue about what I should do with you. My relationships don’t know you so they can’t offer me anything except their support. The longer you conjoin with me, the less support many of my friends and family are willing to offer. Leaving me to suffer and speak for you by myself.
How did you enter me? Why don’t my doctors understand you instead of asking me questions and more questions about how I feel with you living in my body. My host. You have changed me. You have created a new mind and body, without asking me if I desired it. Your like a tale out of a horror story, a vampire, a viral pathogen or zombie who sucks my old life out of me, creating something unwanted. The difference between you and these tales of unrequested body snatching, is their always some cure or perhaps a perverse joy the person invaded feels. Quite often the changed person eventually figures out what they have become, and, often someone who loves them finds a cure; allowing them a way out of their new host virus.
In my reality based, nonfiction world life, no one has a way out. No one has a cure. We are left with putting bandages on unseen wounds. Bandages that fall away as we continue to morph through different stages of your invasion each day. I already stated that I never agreed to allow you inside, but as you have entered me, consider leaving a trail of breadcrumbs that will help me to find the path back to my old world.
Please Fibromyalgia, can you leave these clues soon. I just can not always seem to find my own way anymore. Words escape me at the wrong times; doctors visits are too often one of these times. Words fail for my family, my friends, and the people staring at me as I lumber through my day shielding my eyes from the glare of stares. Stares of strangers who ponder if I am an abnormal creature or a creative liar. I desire to share with them that I live with my host, Fibromyalgia, but have learned that it is a waste of time. All because you remain hidden from their eyes while winding through my insides.
This exhaustion has become frustration. You make me sad. You make me hurt. I don’t sleep well and then I have to keep carrying you around while exhausted. Your weight is heavy. I did not choose you, but I will learn have to learn how to best continue carrying you. You can be very sure that I will search for the magic spell to compel you to show me my breadcrumbs.
Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Advisor