Central Sensitivity Syndrome | A Survivor's Guide

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ABOUT ME

meI have suffered with multiple, progressive, and debilitating central sensitivity syndromes all of my life, but I have also survived them. I was born disabled in 1981, was totally and permanently disabled by age 15, housebound disabled by 19, but not properly diagnosed until I was 21, and did not begin living a life within my limitations until I was nearly 23 years old.

Needless to say, my lack of diagnosis forced me to live a life that was impossible for me to live. As such, my quality of life was very poor, socially, academically, at home, and occupationally. While this is true for many survivors of Fibromyalgia Syndrome (FMS) Myalgic Encephalopathy (ME) or Chronic Fatigue Syndrome (CFS), Myofascial Pain Syndrome (MPS), Sensory Processing Disorder (SPD), my story, experiences, and symptoms veer from the norm.

everyone-is-a-genius-but-if-you-judge-a-fish-lgMy CSS did not appear later in life, but from the start. My CSS has presented as counter-intuitive in regard to typical treatments in many cases. My treatment was something that when handed over entirely to the medical community it left me looking at spending the rest of my life inpatient with a very short life expectancy never capable of walking, using the toilet by myself, or even bathing myself alone ever again. That’s when I took the reins and took over my own care and devised my own treatments on my own with a little guidance from the chronic pain management community.

The result? Living entirely independently, with a high quality of life, and feeling gratitude every day for how far I have come. I am still disabled, that is likely to never change, as my conditions are believed to be the result of congenital herbicide poisoning (mutation) mixed with a family history of anomalous CNS disorders (genetic), and a personal history of multiple occasions for PTSD due to a highly delayed proper diagnosis.

IMG_2836I created this page not to seek attention to my suffering, to meet other survivors and sit around dwelling on our limitations, nor to offer medical advice (I’m a philosophy of mind scholar, not a physician). No, I created this page with the intention to share my findings in order to help others who are looking for what I have found (whether patient or physician), to focus on the obtainable, and to help them discover, acknowledge, and find gratitude in the unusual gifts they have within rather than the usual gifts that everyone else possess.

You were born unique. You were born capable of doing something that the rest of mankind cannot. You and you alone are uniquely qualified to fulfill that task. Never stop seeing what others cannot see. Never stop hearing what others cannot hear. Never stop creating that which does not yet exist.

See – Hear – Pioneer.

I live a highly spiritual (non-religious) urban monastic lifestyle. I spend the majority of my life in silence, solitude, meditation, and study. I live a life of celibacy, sobriety, service, and relative poverty. I may have been born with a highly debilitating neurosensory disorders, but I have never let that stop me from achieving my goals, whether personal, professional, or educational. I’m a compulsive autodidact and I spend the majority of my time with a Pomeranian rescue named Emi.

emishotsMy idea of a great time is being in the quite surround of nature. My idea of a great adventure is exploring nature and the deep innermost recesses of the mind. I am a philosophy scholar. My area is Philosophy of Mind with expertise in Exceptional Experiences. ExEs are typically labeled as religious or spiritual experiences. My approach to ExEs is science-based, with an appreciation for religious, spiritual, and cultural narrative.

Medical/Institutional Designations

SSA/SSDI: Totally and Permanently Disabled – Housebound – 22-Hour Rest

If you are designated as “totally and permanently disabled” by Social Security Disability it pretty much means you have been found unable to work any job on the planet. Since I’m “housebound,” which means I cannot leave my home without severe pain and other symptoms and risk of injury, it makes working outside of the home impossible. Housebound in this case means I spend about 99% of my week in and around my home and 1% of my week running errands, physically visiting with family, or going to appointments. I have about 1 good hour in me outside of the house before it’s a mad dash home before all hell breaks loose.

Think of it as having a severe allergy to pollen – you can only handle so much before your mind and body start going haywire and shutting down, literately and painfully. I also have about 1-2 hours a day I can get things done. This include physical therapy at home, art/creative therapy at home, mental exercises (e.g. critical thinking and memory), picking up around the house, personal maintenance, taking the dog out, etc. In the end, this basically means that even if I could work from home and neglected all of my personal needs, I still would not make enough money to get off SSDI. Believe me, I tried for over a decade to no avail. I do how ever write for myself and self-publish books, so I do have get a “paycheck” and I do “work.” To live the way I do, you HAVE to have a passion, and cause, HOBBIES.

The rest of my time I’m either sleeping (9-10 hours per night) or laying in a reclined position, at rest, with a wireless keyboard in my lap, a wireless mouse at my side, and a 50″ TV across the room as my monitor hooked by HDMI to my laptop sitting on a ottoman to my left. Needless to say, my entire life is pretty much online. I read online, Netflix, text friends and family members, and work on my web stuff all from the comfort of a tri-fold futon with a futon mattress and a 6″ memory foam mattress pad.

VA: Permanent Incapacity for Self Support – “Helpless Child” Designation – Survivor

The “helpless child” designation in my case through the Veteran’s Association can be defined briefly as someone totally and permanently disabled before the age of 18 that is a child of a veteran who died due to a service-related illness. In my Dad’s case, it was Lung Cancer due to his Agent Orange exposure in the Vietnam War.

To find a loved one lost is to find one’s self without breath, without gravity, and in the absence of a physical presence once dear. However, while the physical may be laid to rest, consciousness endures. January 21st 1950 my father was brought into this world. He was a son, a brother, a husband, a father, an uncle, and a grandfather. He was a brilliant man, a scientist, a hero, and he was loved by, and an inspiration to all who knew him. He was selfless, kindhearted, and courageous. The night of January 21st 2012, we said our farewells as he passed and joined our Lord. He is at peace and cancer free, but he is still with us, not just in memory, or in heart, but in spirit. I dedicate this book to the memory of my father for without his great capacity for compassion and understanding I would not be the woman I am today. Father, you changed my life and views of the world only for the better and you have inspired me in ways without words. May you look down and smile upon us as you find yourself in divine company, safe, complete, and finally at peace.

Medical Information for Physicians »