When I was first diagnosed with ME/CFS, my doctor strongly advised against shopping in big box stores. “For at least a year,” she cautioned. Not one to comply, and still in a state of denial about the severity of my illness, I talked my husband into to taking me to a store that offered motorized carts for disabled shoppers. Half way through my adventure, I knew I was in trouble. It was not the distances one had to walk that presented the challenge (as I had naively thought), but the overwhelming sensory stimulation.
ME/CFS affects, among other things, the central nervous system. As I understand it, the nerves are not able to cope with any additional stress, and this includes the sensory input. My therapist defines it for my consideration as the amount of sensory load that my body can handle at any given time. By determining this, I can better manage my progress and avoid crashes.
Consequently, I exist in a bubble – fragrance-free, controlled lighting, minimal noise input, and reduced visual stimulus. I avoid either hot or cold foods, and am overly sensitive to touch. Minimal sensory stimulation has become my norm.
What frightens me is the thought of integrating back into modern life, where the senses are constantly accosted without thought for consequence. From my perspective, it takes a finely tuned nervous system to cope in our over-mechanized, image-popping, aurally-bombarded, scent-driven society. I marvel at those who can manage it, and my heart goes out to all who cannot.
One Woman's Quest 