Death is chasing me. I feel it, breathing down my neck, slowing taking away pieces of me a little at a time, unseen but felt in the recesses of my mind as my body feels broken, weak, chewed up and spit out and a tangled web of pain, fatigue, weird sensations that are unexplained and sucking out my energy and leaving me feeling hollow inside. My body is dying and I feel it’s process.
I have so many conditions, problems, syndromes, and disorders. My life taken over by all of these issues until they are the center focus, forcing my attention away from living, my kids, my husband, my life. I can not think away the pain. I cannot relax my body and hope my central nervous system will quit firing and finally calm itself, easing the pain that consumes me. Interestingly enough, when I relax my body fully, the pain in my hips get worse. The pressure intense. The opposite of relaxing and alleviating some of the pain.
I am not normal, I never have been. My body is not like most people, I don’t present like the text books teach and I don’t react to things like most people do. My body is different and that makes me a zebra among the horses and the problem is that doctors often forget that zebras exist at all. They don’t know what to do with me, how to explain me or my problems so they simply blame me for them instead.
I have ME/CFS, Fibro, IC, UC, migraines, mitral valve prolapse, tachycardia, POTS, some other weird thing with the top chamber of my heart after exertion, gastritis, and many more issues both seen and unseen plaguing my existence and embarrassing me to deal with so much and have to explain it to each new doctor I see causing the light to go out in their eyes and the walls to rise as they immediately shut down and think I’m too much, too much for them to handle and that my mind must be in constant state of anxiety or depression or what have you, causing somatic symptom disorder and that I must be overstating things and allowing my mind to create more issues than there are. An overly anxious female probably assuming some kind of conversion disorder or seeking attention, drug seeking, an unexplained pain in the ass for doctors to deal with.
But I am dying. I feel it. I know my body and my gut is screaming at me to find it and explain it and fix it but how do you make them listen when so many tests come out normal or when they do find something it’s an isolated finding and they leave me with no answers, no explanation, no understanding of the cause of it or if it could be what is taking over my life due to the pain of it.
The biggest problem I’m finding with medicine, beyond the female bias, is that they piecemeal everything. A specialist for this a specialist for that, seeing tiny pieces of me and completely missing the whole. The complete picture, the pieces of the puzzle that might very well fit together and allow the picture to be understood, seen, and explained… Where are the whole body doctors who make sure nothing is missed, left behind, or forgotten? Where are the puzzle solvers?
I sit here waiting on the medical community to do their jobs and figure this out. Why do I have to spoon feed them every single bite? Why do I have to google my own symptoms and point out all the possibilities and ask for specific tests, doctors, whatever I can to get to the bottom of the feeling like death has got me in it’s clutches and is pulling me down.
Weight loss. Over 10% of my body weight in a few months. Muscle atrophy which happened very quickly. Bloated when I eat. Lack of appetite, nausea. Night sweats, though not constant. A low grade fever that comes and goes for over a year. Swollen lymph nodes in three separate locations both left and right side. A chronic cough going on over one year now. Easy bruising that comes and goes. Bleeding sore gums that come and go. Sound like cancer to you? I know it does to me. And yet, I still fight to be heard. To be taken seriously. To be examined. Wasting my time, my life, my hopeful recovery. Maybe its all in my head. Maybe I am an overly anxious female. Or maybe I have cancer. Maybe I’m dying. Maybe my body is telling me something, my gut, intuition, and they are simply ignoring my cry.
I feel death reaching for me. I feel my body dying. Slowly. I feel it. Like being poisoned. And this slow gradual process has just sped up. Like a train gaining speed, it’s approach getting faster now and I feel it more than ever before. Will they listen before it’s too late? Will they heed my call? I feel like I’m rotting from within. All I can think about are my children. Please don’t take me too soon. Please don’t take their rock from them. Grant me healing and life. I want to live.
My life might change today. This might finally be the day I know…