By fall of 2001, my CFS symptoms towered over me.
I couldn't read more than five minutes, before the fog and inner tremors would rear up. I felt like huge adrenaline rushes were coursing through my arms and hands, felt like I was shaking apart. I could not formulate clear thoughts. My face and lips would go numb, speech was difficult. My hands and fingers would get clunky and everything would have to stop.
I still had no idea what I was dealing with, or how to cope. Except for this -- when I could no longer function, I would go to bed. Sleeping, or even just laying with eyes closed in a quiet room for 20 minutes, would sometimes take the edge off my symptoms.
I had IBS, and was gaining weight at an astonishing speed. My hair was falling out. My hands and arms, legs and feet were puffy and sore with edema. I had pain in my neck, shoulders and arms, which would stab here and disappear, only to reappear elsewhere, coming and going like shards of flashing light. Pain messages gone nuts.
My sleep was completely dysregulated, with no pattern to it. I might sleep all day and be up all night, or sleep a few hours at a time or maybe sleep for 14 hours. And still not feel rested when I awoke.
I moved like a ghost on the outside of my family's life. My husband Alan kept the household running, and did what he could for me. Neither of us had any idea what was going on, or where it would all end. We lived this way for many years.
Grim picture. Grim life. The good news is, everything I described here has changed for me over time.
When I went on a low-carbohydrate diet, for instance, the IBS symptoms left within 48 hours. Within three months my hair quit falling out. Other symptoms were slower to change, but all of them have improved and some have disappeared.
I'll talk more about these things in future articles.