Definitions for common words I use to describe my daily experiences to those who are close to me – and therefore familiar with what I’m trying to say. That way if I’m up to posting, I can without worrying that what I say won’t make sense. I hope what Im trying to describe will make a lot more sense and allow me to post/write more often. I hope.
Hit the wall:
This is what I call it when I’ve crossed the threshold of available cellular energy. Once this happens, my most energy-dependent tissue and organ systems begin to malfunction further. Brain, heart, eyes, lungs, muscles. I would describe this as an almost violent experience. While I can usually gauge how quickly my batteries are draining, that ‘threshold’ is invisible. And many times I’m surprised when I ‘hit the wall’. Some days something as simple as trying to mop the floor will do it (surprise!), on better days I might be able to do a little more but this is always a looming threat. Once this happens I’m in a state of emergency. I need the world to stop immediately and I need to completely eliminate all energy expenditures – physically, visually and mentally. Any energy spent after this point will severely increase the intensity of symptoms, it becomes a very slippery slope downward. The harder I hit the wall, the longer my recovery to baseline will be – often I never recover and my baseline is (so far) permanently lowered.
Here’s a very short (not all inclusive) description I recorded one day after ‘hitting the wall’:
17 April 2012 – I just hit the wall, hard. The first thing that happens is a buzzing/tingly sensation washes over my whole body. Face included. I feel my face tightening, abdomen tightening. Now I notice my whole body feeling like the flesh is tightening. I’m feeling numb and as I write this, I feel myself rocking back and forth slightly. I feel a little unsteady, shoulders fatiguing from trying to write , even though my elbows are on the desk. I feel my eyes getting tired, they feel sore from trying to see what I’m writing. The area immediately around my eyes feels tingly and tight. Brain slower than earlier, feel even more confused.
Once I’ve hit the wall, all of my symptoms steadily intensify. Movement becomes harder steadily. Pain increases steadily. Eyesight worsens steadily. Legs become more and more unsteady. Soon my heart will start to hurt – I will get a sharp, burning/clenching pain almost immediately as I speak and that ramps up in intensity as I continue to try to speak. This pain then quickly fades once I stop speaking. Same thing when I am laying in my Son’s bed trying to softly sing him to sleep. I’ve noticed that I sing (softly) exactly 3 words of a song, then I have to stop – catch my breath for 8-10 seconds – then sing another 3 words (exactly 3)… and so on and so on. **** This pain produces a leak of Troponin****
My baseline is my average level of symptom intensity, pain, mobility issues, confusion, etc. My baseline varies. If I have a ‘good day’ and do too much – which might actually be very little – my ‘good day’ turns into a bad day quickly and my baseline will be lowered for weeks or months.
My batteries are what I call my available cellular energy. My batteries start the day with a finite and variable amount of charge, and discharge steadily over the course of the day. The more I try to do (physically, visually, mentally), the faster my batteries discharge.
One of the issues I have is perceptual. It literally feels like I’m living in a movie or a dream. I feel like a mindless robot, going thru the motions of life. And it seems as if I have very little ability to direct my actions like I once did. I am fully aware of reality, but it feels as if I’m 3rd person view watching the movie of my life. Depending on the intensity of this issue (varies with baseline), its another complicating factor for me in communicating my conscious thoughts or interacting with the world around me in any normal way.
This is what I use between portions of a task or between different tasks to keep me from getting as lost or confused. I take 3 – 5 mins in the dark, quiet garage. For example, if my son wants to show me something after I eat, I must take a break – or a page separator – first. Or if I’m trying to make my morning eggs, or any meal, it must be broken down into smaller tasks over time. I heat the skillet slowly – page separator – come back and get the plate and silverware out – page separator – set the butter on the counter and get my supplements ready – page separator – … etc.
Page separators help me be able to mentally follow my minimal routine and slow down the confusion.
Scraps of Paper:
My cognitive issues and mental impairments are still significant and worsen according to my baseline. It was worse during the first 3-4 years, I couldn’t communicate complete thoughts even on my best days. To fight back, I began writing whatever fragmented thoughts I had on small scraps of paper in the hopes that someday I’d be able to assemble them and then be able to communicate my needs to Doctors. Eventually as my mental impairments slowly and slightly improved, the scraps of paper got bigger – with more thought on them. Years worth of tortured thoughts, I kept them all. This was/is like therapy to me and I feel has helped me rehabilitate my mind somewhat.
Recorded Scraps of Paper:
Around year 2 I began wearing a recorder around my neck. I could speak faster than I could write. I often lost track of my thought when writing, so this helped greatly. Except that most of my recordings only made sense to me as it’s filled with tangential ramblings. But my thoughts were coming out – even if they weren’t as helpful as I’d hoped. I fought back…
If I do end up posting more of my ‘scraps of paper’, you’ll see many of them begin with “garage sessions”. That’s when I’m alone in the garage trying my hardest to think and get out coherent thoughts – then record them. It’s like mini-therapy to me.