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

Six Degrees of Exhaustion

Did you know that the concepts of tired and exhausted actually have multiple levels and degrees to them? That there is a complex and complicated system of quantifying these ideas for which the English vocabulary is seriously lacking? Well today, free of charge, I will offer the Cliffs Notes edition on degrees of exhaustion, or layers of tired (depending on if you want a pop culture reference, or a classic literature Dante reference).

1) Tired- you could continue what ever activity you are engaged in for a while longer, but it would be more comfortable to sit down and rest; with proper motivation you can find the energy to get up and going again

2) Drained- you are mentally tired as well as physically tired and are uncomfortable unless sitting or reclining

3) Sleepy- you are nearing the point of needing to sleep, and activities are becoming difficult

4) Groggy- it is time to sleep, your ability to focus and concentrate is gone and you are comical to observers as you are "sleepy drunk"; this is a great time for those not groggy to engage you in a conversation and laugh hysterically at your answers

5) Exhausted- you may or may not be sleepy/groggy but it is a physical effort to move your body; you debate whether or not you really need to go to the bathroom that badly because of the amount of energy required to get there and back; you ignore itches because scratching them is an effort

6) Beyond exhausted- sitting up requires vast amounts of energy which you do not have, and you discover that odd body parts like fingers and eyelashes suddenly weigh a lot; Activities that involve movement are a joke and you long to be just tired. You watch enough TV and DVDs to reach a point of detesting most programs, and you actually wear out an iPod from overuse listening to music and audiobooks. Sleep does not change this state, you fall asleep beyond exhausted and wake up the same way - sort of like a really warped version of ground hog day. And there is not enough Starbucks in the world to create the necessary energy.

My energy levels fluctuate between days last month when I wheeled myself 1 1/2 miles home from the store to more recently when I have been bouncing between exhausted and beyond exhausted. I keep telling God that I have too many things to do to be tired, and He keeps laughing and reminding me that this whole thing is out of my hands. Sometimes it is a little annoying, the whole "God is always right" thing! It makes debating and arguing in prayer a bit one sided and predictable. Not that it stops me or anything though! :) Today is totally my fault because yesterday I pushed myself far beyond the limitations of my body in order to prove a point to myself in cooking dinner. The cost benefit analysis at the time said it was worth it, and I still agree. Besides, I am too damn stubborn to play by the rules of this body. I am still the one in charge here, regardless of the coup it is trying to throw on the government. But for today I am curled up on my bed watching DVDs and pretending that it is because I am that into them instead of being at level 6. :) Denial is more than a river in Egypt!

Way back.. in 2005 I was sick and the Dr's thought I had Legionaires...they never really diagnosised the end it was mostly pneomonia...(sp?) anyway-- I remember being at level 6... I even was on oxygen to help me out and that seemed more trouble than good... that being said I get how you might be feeling... on the other hand that is pure devils' advocate... do you think that your "stubborn will to not play by the rules of YOUR body" is an issue?
DArlin... do what you can but don't over-do...
or a shmoo might come and get you!

Job 8:21

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

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Wild Olive

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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