Tuesday, November 24, 2009

Be Here Now: Finding The Right Word to Describe How I Feel

Every day, I spend some time trying to tame our wild kitten, Sir Hiss. I feel a bit frustrated and worried about the whole undertaking. I have no experience, have found little information on the Internet, have not been able to talk to a real, live person to trade tips and tricks about the process and I am left wondering if I have done the right thing by trapping him in the first place.

We have a veterinary appointment on Wednesday and I envision coming back covered in cat scratches and bites...

Part of the taming process involves spending time with Sir Hiss. Considering that we really haven't gotten to the holding and petting phase, this time is more about hanging out and staring at each other. But since I am not really supposed to be staring at him, I migrate over to the book shelf, take out a book, sit down and spend some time reading while the kitten stares at me.

This is how I've discovered my copy of
The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide over the past few days. I admit I have been mostly skimming it, but today I made a discovery which lead to a revelation. In a nutshell, I learned the importance of using the right words to describe the symptoms of my chronic illnesses.

Driving the housing van on EMPTYImage by hectorir via Flickr

I say I have chronic fatigue syndrome. I also say a lot in conversation that I am tired. The truth is that I am not tired, I am fatigued. Fatigue is a constant deficit of energy that makes it impossible for me to get as much done in one day as a normal person can. In order to complete the number of tasks, chores, errands and other activities a normal person can accomplish in one day, I need several days to a week and sometimes even more time. I am currently plagued by a decreased capacity to function normally due to dysfunction of my central nervous system. My energy fuel tank leaks and the level is always hovering near empty.

It is important to make the distinction between tired and fatigued. I can not tell you how many times I hear other people say, "I get tired too." when I say I am tired. After my revelation, I agree, normal people get tired. Normal people get tired when the exert themselves, whether physically or mentally. I am fatigued even when I am resting. Normal people start their days with an energy fuel tank that is closer to full than empty. Normal people don't wake up tired; I envy them because they wake up rested, refreshed and ready to tackle their day. Normal people bounce back from being tired to being energetic once again. They just don't have a constant energy deficit like me.

I hope I am making sense...

Running on emptyImage by Frederic Poirot via Flickr

Beyond commonly used words, I think prostration is a better word for my symptom of chronic fatigue. Extreme exhaustion or lack of energy is the definition of prostration. Lying face down on the ground out of reverence or deference to someone or something is a more commonly referenced definition of prostration. Which is apt, since I often feel like I am flat out wiped out and can barely resist the urge to just fall flat on my face and succumb to the forces of gravity. My preferred positions are reclining and lying down. That is how fatigued I am now.

Even when tired, I don't think normal people have to fight to remain upright against the forces of gravity.

Secretly I want to be just tired and I miss the days when I complained that I was tired too. Maybe that is why I have been using the incorrect word to describe the physical feeling of my chronic fatigue. Maybe I am just mentally tired of running on empty...

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1 comment

Renee said...

You are so right about the fatigue and how difficult it is to describe it. It is so overwhelming...have to have it to understand it.
Nice description!