And God Laughs
I told God my plans and He laughed. So now I am living, laughing, and loving according to His Plans.

Sleep is for Sissies

My brain has no inherent circadian rhythm. Without the support of (expensive) medications, I do not follow anything that comes close to a 24 hour sleep wake cycle. This poses difficulty when trying to exist in a world that seems rather attached to its 24 hour clock system. It is especially ironic that the same issue that makes it almost impossible to function during the day without medical support also frequently causes frustrating and challenging insomnia at night. I can never independently fully wake up or fully fall asleep. I would like to request repairs be made as that has to be covered under the 50 year, 50,000 mile warranty. :)
So tonight I can not fall asleep. I have tried all of the usual tricks. I laid quietly and listened to an audio book, and while I learned a great deal about Obsessive Compulsive Disorder I learned nothing about sleeping. I listened to soothing, calm classical music and remembered why I hate riding in elevators with built in speakers. Since the idea of warm milk just creeps me out, I had hot ginger tea (awesome tea with ginger, vanilla, and coconut). I even tried counting sheep but that never works for me. I start out all right, but then I start to ponder why it is sheep you are supposed to count instead of anything else. Sheep are not particularly cute animals, nor do they tend to be pleasant smelling. Why not count hummingbirds, or butterflies, or cows jumping over the moon, purple elephants, or frog bumps on a log? Then my imagination becomes bored and so my sheep start appearing in costume - frilly tutus, flapper girl dresses, tuxedos, kilts, etc. By that point I have lost count and am still wide awake.
I have tried sleeping with my head at the head of the bed, at the foot of the bed, and diagonally across the bed. I have done the frustrated sleeper rotisserie where you turn every few minutes from front to side to back to side and back to front. I have read chapters of Awakenings (ironic title, I know) and besides feeling even more assured that trying LDopa was not a good option, I am no closer to sleep than when I woke up this morning. So I have decided sleep is for sissies. I am going to use my hours of sleeplessness to accomplish something - what I am still a little foggy about but I am not going to continue the cycle of a sheep fashion show and sleep rotisserie any more. I will do something productive until my brain figures out that it is dark outside, and it is late, and that on the schedule is this sleep stuff. Anyone for some hot chocolate? :)
3 comments:

chamomile

No time for more now. Barbara


Unfortunately I am allergic to Chamomile, so while it could potentially help me sleep it is debatable whether I would wake up in the morning ;)


Rats! Wish I could suggest something effective. Don't give up trying or pestering the medical community to help you. Well, that was unnecessary, eh?

Barbara


Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."



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Wild Olive

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Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back

Ataxia- difficulty maintaining balance and coordinating/executing movements

Dysphagia- difficulty swallowing due to any number of causes including muscle weakness and poor muscle coordination

Adipsia- the absence of a sense of thirst



Other Medical Issues- Lupus Anticoagulant (autoimmune disease that causes me to tend to form blood clots and has already caused two deep vein blood clots and one mild stroke), Migraines, unknown connective tissue disorder, abnormal gastric motility, allergies, history of v-tach and severe sinus tachycardia, changes to my echocardiagram that include leaking valves and a new murmur, low blood pressure, ataxia, untreated PFO (small hole in my heart that increases the risk of stroke), chronic lymphadema in my left arm, Hashimoto's Thyroiditis, Narcolepsy/Idiopathic CNS Hypersomnolance (believed to be a result of the dysautonomia and my brain's inability to regulate the sleep/wake cycle), mild hearing loss, malformed optic nerves, polycystic ovarian syndrome, pernicious anemia, vitamin deficiencies


* Title comes from an old Abbot and Costello routine that I chose to memorize in 6th grade and absolutely love.
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