This last week I spent four days lilac. It was marvelous, glorious, wonderful. Beyond comprehension. The world was my oyster and there was no problem too big for me to handle. In contrast, my chronically healthy husband had the respiratory flu. So he sat here hacking away and bitching and moaning and blowing his nose as I experienced the joy of each moment like it was a gift of from the gods of health. Sure made me realize what a drag I must be to hang out with when I am whiny and feeling sorry for myself. It also renewed my acute memory of what hell this illness really is. I'd forgotten how good feeling good felt! Never one to look a gift horse in the mouth I refused, absolutely positively refused, to live anywhere except in the present tense of each pale purple moment. They don't come often enough to squander. My seasoned habits and cranial neuropathways kept trying to drag me back to the misery of the past or fear of the future. It's where I spend most of my time. But I felt so darn good I absolutely refused to live anywhere but in the heartbeat of the moment and over the course of the four days whenever my mind would wander kept dragging myself back to the present.
On the morning of the fifth day I woke up curious, as I had the previous four, becoming increasingly more hopeful with each passing day Fibromyalgia just spontaneously went and cured itself for some who knows why reason. But my neck was sore and stiff, it felt like there was something on it, like a big pocket of air under the deepest layers of my dermis. Of course there was nothing there when I reached back and touched it. The very mild stirrings of a headache were starting to rise. I bargained with myself to ignore these symptoms, chalking them up to a psychosomatic fear of Fibromyalgia. Or I was getting the respiratory flu from my husband. Either way I was not ready to give up my string of lilacs, no not at all, let alone the possibility Fibro might come rushing horribly back.
But, alas, seeing as this illness is NOT an imagined up psychiatric response to stress and depression, mind over matter did not prevail. Slowly but surely, bit by bit, over the course of the day my usual state of being, the one where I have that illness called Fibromyalgia, came back to me. By the end of the night I could barely move my neck. It was swollen and tender to the lightest touch. I had a terrible headache radiating up my skull and into the frontal lobe and felt shaky, nauseous and like I was getting the flu. Smack me across the face, it hit me! One reason this illness is so damn terrible is because one of four possible things were happening to me, but I had no way to tell which one it was. 1) Fibromyalgia was coming back or flaring. 2) I was getting the respiratory flu. 3) I laid on my neck funny the day before at the pool and it was strained or twisted. 4) I was having hemorrhagic strokes again. Two years ago I had two. Directly proceeding an intense feeling of "well being" and manic behavior and a thunderclap headache. So while my behavior this past week didn't fit the textbook definition of Cerebral Vasculitius RCVS, the condition which caused my strokes, there were enough parallels to cause alarm.
Really? I may be mid stroke and am just supposed to put my bathing suit on and go down to the hot tub with my husband for his habitual Friday night scotch and cigar? Knowing "lucky" doesn't even begin to cover how I lived past the last round? So yeah, that's it. One thing that is so freakin' terrible about Fibromyalgia is you think you may be dying, but there usually isn't anything they can pinpoint as wrong. Save for the handful of times there are. See I walked around for four days between stroke one and two, acting like a complete loon, convinced the headache making my head feel like a watermelon hit with a sledgehammer was JUST Fibromyalgia.
Thanks for joining,
P.S. The outcome following this article is I did not have strokes or get the flu. But Fibromyalgia did come back...