When I got full body Reflex Sympathy Dystrophy (CRPS), I had developed Centralized Pain. None of the Neurologists, Physical Rehab Specialists or Anesthesiologists I saw were ever able to explain why smells, tastes, sounds and light touch became excruciatingly painful. It was as though my senses became a means for by body to become a self contained Medieval Torture Chamber. I wasn’t able to live independently because I was so debilitated from my RSD that was caused by a post concussive syndrome with persistent whiplash. I had a Traumatic Brain Injury in 1994 and was born with Ehlers Danlos Syndrome but was only recently diagnosed with EDS. So, my neurological issues were fairly complicated and overlapped with early childhood post viral auto immune syndrome along with a connective tissue disorder that became more progressively more painful and degenerative over time.
The progressive neurological and physiological degeneration made my Sensory Processing Disorder increasingly more excruciating over time. Yet, no Dr was ever able to explain why I had developed this complicated problem with sensory input. I coped by calling it my “spidey senses”. I couldn’t even bear the smell of onions or garlic being cooked in a distant part of the house… and one day, the sound of a neighbor’s wind chime caused me such agony that I begged my Mom to find it and make it stop. It was more than 5 houses down the street and yet it sounded like it was in my bedroom. Light touch felt like shards of glass on my skin and people feared touching me. My isolation became more unbearable and I became increasingly filled with despair. Knowing that my suffering was affecting the lives of those around me was harder than living with 24/7 debilitating pain. I lived with a heating pad on high, satiny soft clothes, I wore soft, “Ugg” styled boots year round because everything else was too painful, I had to have sheets made from Bamboo or Eucalyptus and I never went without ear plugs.
The only person who could give me any insight was my Mom, who is a Licensed Marriage and Family Therapist. She had experience with children who had SPD.
Now, after living with this for 15 years, I am in a much better place. Thankfully, Hyperbaric Oxygen has transformed my life and my senses are less painful than before. However, I use a weighted blanket, have soft, satiny sheets made out of wood pulp and I live a very quiet life. I had to let go of friends and family who bring conflict, judgement and drama. It’s been a hard journey but self care has been central to my path to healing. I know that I have chronic diseases but Healing & Wellness are not beyond my reach. It’s because of my health issues that it’s more important than ever before that I do everything I can to support my special needs.
I will be posting more personal stories and videos… along with more information on things that have helped me to not be bed ridden anymore. Although, there are still days and weeks when I am still bed ridden from my pain. However, I try to not beat myself up over it. I find that honoring my body serves my wellness in the long run.
Understanding the complex facets, like Sensory Processing Disorder that comes with Centralized Pain, RSD/CRPS, Arachnoiditis, Chronic Fatigue Syndrome, Autism and other medical diseases and syndromes is crucial to taking care of yourself and your loved ones. The person with SPD is affected as are those in that person’s life.
This article is both illuminating and filled with vital information on SPD. I hope you can read it and share it with anyone who can benefit from it.
“When a gentle glow feels like a spotlight and everyday sounds hurt your ears, life can get anxious and painful. But there may be an upside to being a highly sensitive person.
— Read on www.bbc.com/future/story/20160617-the-daily-pain-of-having-extreme-perception