The CYA/VOICE! Dictionary was created
by YPWC Heather Freese to help YPWCs define some of their unique CFIDS
experiences. Following is a compilation of all the definitions published in
Youth Allied By CFIDS.
who takes daily shots has experienced this phenomenon. You can go for weeks
sticking the needle in your leg/arm/behind with little or no pain and then
suddenly, WHAMMO, one day it hurts like the devil for no known reason. Example:
"Ouch, bad stick, BAD STICK!!!!!"
way you feel when your mother asks if you want chicken or fish for dinner and
it's like the fate of the free world hangs on your answer. Your brain
frantically hops back and forth, chicken-fish, chicken-fish, chicken-fish, until
finally you break and scream, "I DON'T KNOW!!!" Example: In response to your
mom's question about dinner, you calmly and rationally say, "I am having a
decision crisis now, please proceed without me."
Dining aíla Floor, phrase. (From Jim and Holly Moore) One "Dines aíla
Floor" when one is simply too tired and dizzy to sit upright at the table, but
still wishes to enjoy a meal in the company of others. One simply takes oneís
plate, fills it up and slithers ever so elegantly to the floor to consume the
feast. Example: While stepping over two or three flatbacking feeders, one might
remark, "Oh, I see you have decided to Dine aíla Floor this evening. How lovely,
Defensive Eating, n. Defensive Eating occurs when you load up
on extra healthy food before a planned activity. Example: Before class my family
observes me gorging on turkey, V8, peanuts and salad. Through a full mouth I can
then say "What are you looking at? Iím practicing Defensive Eating!"
The Duh List,
noun. (From me.)
The Duh List originated when a fellow YPWC friend was visiting this summer. We
surmised that there are certain stupid things that happen that make us feel ill,
which we donít even realize because they are so stupid. Elements of the Duh List
include: Do I need food? Water? Should I be asleep now? If you run through the
Duh List sooner or later you hit something that makes you go, "Duh!
Thatís why I feel so crummy!" Example: I was tapered off a medication and
told that if headaches and dizziness occurred I should probably go back on. A
month later, while having constant and seemingly inexplicable headaches and
dizziness, the Duh Factor kicked in and I realized that medication reaction was
on my Duh List. (Note: In case I havenít said "Duh" enough in this column, thus
filling up my Duh Quota, it should be duly noted that the words "Doi" and "Doh"
can be used as Duh replacements in a pinch.)
Quotients: the units persons with CFIDS (PWCs) use to measure the amount of
energy in their bodies at any given time. EQs can be eaten up quickly by
activity, stored for future use by flatbacking (see "CYA/Voice" dictionary in
the Winter newsletter), or bottom out suddenly, leaving you in a state I call
"Unplugged" (totally disconnected from any energy source). Example: "I stored
up a week's worth of EQs just to walk through this store, and now I can feel
them dripping out of my body one by one."
Familial Interpretation, n, phrase. The ability of the family
understand its PWCís vigorous gestures and inventive speaking as he/she
struggles to communicate during moments of brainfog or skipping.
v. After the
expenditure of energy, this is the state of total flat-on-your-back rest you
must have. Example: "Oh, I'll be just fine if I flatback for a couple of
Frompy, adj, (from me, Heather) The state of feeling so grouchy, frumpy and
irritable that you simply must stomp about the house muttering to yourself in
order to remain sane. Example: After a long day of being poked and prodded at
the doctorís office, you return home to the sound of your neighborís remodeling
and also discover that someone has eaten your cookies and moved around the
organized piles of junk in your room. Upon being asked what is wrong you throw
yourself on the floor, kick your hands and feet into a frenzy and wail, "I feel
How Arenít You? phrase. This is the question we wish people would
ask us instead of "How are you?" since responding to that means saying "Not
great" or "Still sick." If instead we were asked "How arenít you?" then we could
say, "Great!" "Cool!" and "Most Fabulous!"
n. Sometimes no matter what you say people donít understand that you
should not eat even a bite of their birthday cake/rolls/cookies. Saying, "Iím on
a diet," garners gasps of dismay and explaining your entire CFIDS care plan can
get tedious. This is when you should employ the Imallergic Excuse, by smiling
and chirping, "No thank you, Iím allergic."
cognitive day that is not so neato. When your brain is incognito you may find
yourself saying things like, "Gee, that bright is really light," or get stumped
spelling your own name. Example: While throwing your socks in the toilet and
trying to flush the clothes hamper, you smack yourself on the head and say,
"Man, am I incognito today!"
Inventive Speaking, n, phrase. When two or more words are meshed
together forming a word incomprehensible except to the PWCís family members.
Example: "Could I please have my blippers?" Translation: "Could I please have my
Myalgebra, n, (from Rebecca Moore) Myalgia (aches
pains) induced by math overload. Example: While staring at the numbers, plus and
minus signs and various other intricacies of algebra, your brain slowly begins
to send sizzling signals of pain and suffering throughout your body until you
cannot add two and two together without getting five. At this point you are
technically allowed to quit by stating "myalgebra is really acting up on
disobeying your medications. For example, by staying up until 5 a.m. after
taking melatonin and several other sleep-inducing drugs, you commit pill
like those fluffy little Star Wars guys) Person WithOut CFIDS: Those
disgustingly healthy people who have never experienced even a stuffy nose yet
feel qualified to comment on our state of health. Example: "That teacher who
told me 'just push yourself and you'll feel better' is such a classic PWOC."
Note: this term can also be used in a derogatory way when muttered under the
breath or yelled loudly. Nobody outside the CFIDS community will get it.
Example: You are going through the mall in your wheelchair and notice some uggo
people staring rudely. Either mutter or yell, "What are you looking at, you
alternative way of saying that you are doing your shots right now. If it's a
particularly Bad Stick you can take your mind off it by singing to the tune of
"Breaking Up is Hard to Do." (It's an oldie; ask your parents.) Just replace
"Breaking Up" with "Shootin' Up." Example: "Get away from me, I'm shootin'
up!" Note: you might want to be careful to whom you say this. It can have
negative connotations if you don't specify that you're shootin' up with B12 and
not something illegal.
Skipping, n. When a person with CFIDS gets stuck
one word or phrase, much like a skipping record repeats a word or a measure of
music over and over. Skipping allows the person with CFIDS (PWC) to pause
without an embarrassing silence, simply repeating the last word or phrase over
and over, while the brain rests and develops the rest of the thought he/she is
trying to express. Example: Rebecca preparing for a trip: "But when, when, when
we, when we, when we get to, whenÖ" (Obviously the word "airport" was eluding
her.) Usage: "Rebecca, youíre skipping again!"
youíve violated your diet and cheated with, oh, say, pizza and ice cream,
sniggly is the funny, happy, twirly way you feel just before you crash. Your
personality shifts into high gear and you find yourself singing Broadway
showtunes to anyone who will listen. The world is one big giggle, and you giggle
enough to snort, which makes you giggle even more. Hence sniggly, a word
you may repeat many times just for the fun of it.
Thing, noun. (From me, Heather, again) "Thing" is the universal
word I use when I suddenly cannot find the word for the, well, thing I am
wanting. Example: At the lake I cry, "Oh, look! Look at the, the...THING!!!"
"The groundhog?" "Yes! Groundhog! Exactly what I said."
n, (from Sandy
Becker) The language spoken by uncoordinated hands and brains in E-mail
messages. Example: "I signed my E-mail as ĎSnady B.í rather than ĎSandy B.í I
must have been speaking typoese again!"
n. The feeling
that you have never done any of this before (opposite of deja vu) - used when
trying to remember how to do the simplest things during brain fog.
n. This is
the phenomenon that occurs when you are tired and speak strangely, kind of like
Yoda from Star Wars. Example 1: "Chelsea, I'm sure what you are saying is very
wise, if only I knew what you were talking about!" Example 2 (from Heather): I
wanted to say, "Mom, could you please put up the barrier so the dog can't get
into my pink room?" What came out was, "pink dog room stopper." Dad has further
elaborated to tell me at times, "Heather, you're speaking Yodish."