PEFFS

I have included the “dictionary.com” definitions of each of these words for your edification and entertainment.    Seeing is a lot of work and how much I see and what I see is really dependent on PEFFS.    I define PEFFS as follows:
PAIN:   They physical pain I feel from the act of seeing.    The seeing pain of bright light the crushing pain of eyes that have done too much work.
FATIGUE:  The mental intellectual act of seeing.   The work my brain has to do to compensate for a lack of vision.
ENERGY:   The physical or mental power I have to expend on seeing.
FUNCTIONALITY:   The mixture of mental and physical capabilities I have to see and do things
SEEING:   They physical and mental act of observing the world through my eyes.
PEFFS impacts everything how I work, how I play, what I do to work, what I do to play.   The relationships I have and don’t have.    To get through a day with my disability I manage four things: Pain, Fatigue, Energy, Functionality. Each can be problematic.
Pain.
With my back pain these days is brutal. I am a big suck when it comes to doctors and me wanting a great big needle in my back tells you I am in a ton of pain. Without the back issues pain is still my constant friend. Light is the biggest cause light and over use of my vision. Light alone can impact me like little needles in my eyes. Light can be so brutally painful. I also have pain when I’ve overdone it and have fatigued myself to the point where I can no longer function. There are times where I have strained myself so much I haven’t been able to consciously see for a number of weeks.
Fatigue
Well this one may be obvious but its back to that energy budget I talk to. This is a limited quantity for me. I can only take so much fatigue being so tired working so hard. I have limits. Its a hard pill to swallow that I know some of my mortal limits. This one clearly defines what I can and can’t do and the work I can and can’t do. Back to not being able to function. When I was at Microsoft I would regularly get to the point where I couldn’t function. Microsoft is a culture of reading. Email documents presentations etc. and they are unfriendly to those who need some help. I could never communicate successfully to Microsoft that buying me gear is only part of the solution. Some consideration accommodation some new ways of working and collaborating and communicating were also necessary.
Energy
Energy and fatigue were in my mind one and the same for a long time. This is the way I fell after eating a fine meal or great cookies. I have a favorite but I’m not letting the cat out of the bag. This is how I feel listening to great music or after a great / good sleep. Energized. Well I have learned that I can feel energized and fatigued and get totally frustrated at still not being able to do anything or have to lay there because doing something hurts too much visually. At Microsoft I would get so frustrated as I knew I’d have interesting thoughts and things to contributed but not have the wherewithal to do it because of fatigue not a lack of energy or passion.
Functionality
This one is all the cool tricks I use thanks to my cognitive abilities. Thanks to being able to think my way through the problem and find a way to see. I am very functional when I have the energy not in excruciating pain and am not fatigued or not overly so. People see the functionality and don’t understand why its there one day and not the next. Drove Microsoft crazy.
Seeing
The creme de la creme the pinnacle. I love participating in opera. Its the pinnacle of performing arts. Dance, Singing, Staging, Costumes, Scoring, Make-up etc. Its the tops. Well seeing for me is the tops. I have the functionality which combing with what I can squeeze out physically and I have the capability mentally and physically. Its joyous. It really is. I can understand why people would say they would most of all hate to loose their sight. People don’t understand that I live on the razors edge. I am the paradox I can see but I can’t. When all is aligned I can do glorious things. But when they’re not I can still think glorious things its just I can’t communicate them visually. I truly am a blind man stuck in a sighted world. But with the cruel tease of seeing occasionally.
func⋅tion⋅al
–adjective

1	of or pertaining to a function or functions: functional difficulties in the administration.

2	capable of operating or functioning: When will the ventilating system be functional again?

3	having or serving a utilitarian purpose; capable of serving the purpose for which it was designed: functional architecture; a chair that is functional as well as decorative.

func⋅tion⋅al⋅is⋅tic. (of a building or furnishing) constructed or made according to the principles of functionalism or primarily as a direct fulfillment of a material need.

4

Also,

en⋅er⋅gy
–noun, plural -gies.

1	the capacity for vigorous activity; available power: I eat chocolate to get quick energy.

2	an adequate or abundant amount of such power: I seem to have no energy these days.

energies. a feeling of tension caused or seeming to be caused by an excess of such power: to work off one’s energies at tennis.

3

Often,

4	an exertion of such power: She plays tennis with great energy.

5	the habit of vigorous activity; vigor as a characteristic: Foreigners both admire and laugh at American energy.

fa⋅tigue
–noun

1	weariness from bodily or mental exertion.

2	a cause of weariness; slow ordeal; exertion: the fatigue of driving for many hours.

3	Physiology. temporary diminution of the irritability or functioning of organs, tissues, or cells after excessive exertion or stimulation.

4	Civil Engineering. the weakening or breakdown of material subjected to stress, esp. a repeated series of stresses.

pain
–noun

1	physical suffering or distress, as due to injury, illness, etc.

2	a distressing sensation in a particular part of the body: a back pain.

3	mental or emotional suffering or torment: I am sorry my news causes you such pain.