CFS glossary a (mostly light hearted) look at the experience

[Guest guest]

· A Happy Christmas: Warm feet for the first time in 3 ½ years.

Abdominal pain: CFS Symptom most common in teenage sufferers.

Unlikely to be

\l " Somatisation " disorder (although teenagers often experience

being treated as such).

Acupuncture: Alternative reason for becoming a human pincushion.

Alcohol Intolerance: Severe reaction of nausea and poisoning as a

result of drinking alcohol.

Also Known As: Chronic Fatigue Syndrome (CFS) is also known as:

· Myalgic Encephalomyelitis (ME),

· Myalgic Encephalopathy (also ME),

· Chronic Epstein Barr and Chrono Mono (pre 1988),

· Nightingale's Disease (Florence had it),

· Ramsay's Disease (Dr. Melvin Ramsay),

· Chronic Fatigue & Immune Deficiency Syndrome (CFIDS, the USA

name),

· Post Viral Syndrome,

· Yuppie Flu (Good old 1980's),

· Neurasthenia (19th century),

· This Bloody Thing (one of my favourites)

· and plenty of others….

Analogy: Common way of trying to understand CFS :

· " CFS is like your car battery has gone flat, and can't

recharge. "

· " CFS is like a Tamagotchi you have to look after, it is

unbelievably demanding, no matter what you do it just gets worse, and

when you think it's dead it starts again. "

· " Coping with CFS is like learning to surf huge waves, and

just when you think you can manage to stay upright, a whole lot of

dumpers come along. "

Analogy Alert: Warning given when you feel an analogy coming on.

Anti Depressants: Drugs frequently and blithely prescribed for people

with CFS. See \l " Depression " , \l " Miracle Cures " , \l " Serotonin " .

Bad Fairy: I'm still looking for that bloody spindle to have it

forensically analysed. And dusted for finger prints.

Bath: A stage in the illness when you are well enough to support your

head out of the water instead of drowning.

Bath Pillow: Hook to hang your head on to keep from drowning.

Beanie: Winter Wardrobe essential. Protects from headaches due to

cold. Most heat loss happens from your head. See \l " Temperature "

Bedridden: Usually at the beginning of CFS, and after every

\l " Crash " . Can last days, weeks, months or occasionally years. Stage

before \l " Management " can be used.

Belief: Top of everyone's Wish List.

Bent Toilet Roll Holder: Reminder of those really bad days when it

was used as an aid to stand up.

Blob Out: State of being when lying on the floor and watching light

entertainment on TV without moving for several hours might allow you

to recover enough energy to get into bed.

Boom/Bust: Method of living with CFS where 'when you feel good, you

go for it'. And then \l " Crash " .

Brain Fog: Can't think, can't remember, can't talk, can't see.

Bureaucratic Forms: A full week's work for someone with CFS.

(Exception: applying for the \l " Disability Support Pension (DSP) "

can take a month).

" But you look so well! " : But I am so ill.

" Can't you try a little harder dear " : Social pressure to exacerbate

symptoms; akin to inviting a diabetic to a lolly party or a hay fever

sufferer to a pollen festival.

CFS Carer: Someone who develops \l " Brain Fog " and \l " Exhaustion: "

in sympathy.

CFS Researcher: A rare breed.

CFS Sorry Day: A day in the distant future when officialdom

recognises that they shouldn't have stolen CFS children from their

mothers, forced them to exercise, and made their CFS worse.

 

Children: The delight of a CFS sufferer's life, but very hard to care

for.

Chronic Fatigue: Only ONE of the symptoms of CFS, sometimes wrongly

used to label and trivialise illness as if it is just about being

tired.

Chronic Fatigue Syndrome (CFS): A serious and debilitating condition

which combines extreme exhaustion with an array of other

\l " Symptoms " .

Clear Wee: Sign that you are drinking enough water.

Clunk: The sound heard when a non sufferer finally gets some kind of

understanding of what this illness is about.

(Usually delayed in family members but occasionally heard in friends,

acquaintances and doctors after they have met someone else with the

illness, or seen a segment about it in the media).

Cobwebs: Something to look at as you lie in bed. The longer you are

ill, the more there are to look at. Sometimes found in corners of the

mind.

Coffee: Drink I long for but can't often have.

Cold Feet: Discussion of these is a perfect conversation starter.

Concentration: Small units of time lasting anything from 3 seconds to

several minutes (on good days).

Constant Companions: Sipper bottle and hot packs.

Consumption: Old name for a cluster of lung illnesses including

cystic fibrosis, tuberculosis, emphysema, and asthma. Just as ME/CFS

may turn out to be a cluster of illnesses with a common dysfunctional

pathway.

Conversation: Sorry? What did you say?

Crash: When CFSella's body clock hits its own individual version of

midnight and turns into a pumpkin … or pumpkin soup. See

\l " Bedridden " .

Crawling: Mobility on a really bad day.

Critical Mode: A state where your needs must be met immediately. Most

notable when you need to lie down (why don't they have day beds in

supermarkets?), and also when you need to eat (mandarine in handbag).

Cytokines: The cause of flu like symptoms. In CFS the theory is that

when the virus is gone the cytokines forget to disappear.

Deep Yellow Wee: You're probably dehydrated, so you need to up your

fluid intake. Taking vitamin B2 supplements can also be to blame.

(Cosmopolitan Feb 2000 p150 - Information comes wherever you can get

it).

Delayed Payback: You do something, you feel a little tired, but fine.

Two days later you can't get out of bed.

Denial: The belief that it hasn't happened, that it is not as bad as

you think, and that it won't last for very long. Particularly

embraced by absent parents or other extended family and by many

sufferers in the early stages of the illness.

Depression 1: Mistakenly seen as the cause of CFS symptoms.

Depression 2: What you get when you are very ill, your life falls

apart, no one knows what is wrong with you, your friends desert you

and the medical profession treats you as if you are mad.

DHEA: A steroid treatment investigated by the Newcastle pain research

team. Made famous by Alistair Lynch's drugs scandal. It is

interesting that he never tested positive to steroids so does this

mean he was merely replacing a depletion of natural body steroid?

Diabetes: Collection of weird symptoms thought to be " all in the

head " until an obscure hormone tucked away in the pancreas was

identified.

Diet: Something which ends up very limited when you remove all the

foods that do (or might) cause an adverse reaction.

Disability Sticker: Ticket to go shopping.

Disability Support Pension (DSP): Official recognition that at least

Centrelink believes you.

Income support (of the subsistence kind).

 

Distance Education: School which has the highest number of enrolled

students with CFS since most schools can't cope with CFS disability

students.

Doctor Bashing: Conversation between sufferers after one more

frustrated round of seeking some help.

Dot Points / Bulletted Lists: Reading material you can actually

read!. See \l " Paragraph Books "

Eating In: Boiling the rice, or making the toast, or pouring boiling

water over the 2-minute-noodles, hoping that brain fog or exhaustion

doesn't set in before you burn toast or pot/kettle dry.

Eating Out: The challenge to find a restaurant which:

· You can afford,

· Serves foods which don't contain preservatives, mayonnaise,

stock cubes or anything else you happen to be allergic to,

· Has no steps,

· Chairs that don't kill the fibromyalgia,

· Isn't a long hike to the nearest place to park, and

· Doesn't take so long to serve food that the \l " Energy

Budget " runs out before it arrives.

Electric Toothbrush: Energy saver for people with CFS who are very

ill (but who are well enough to hold a toothbrush).

E-Mail: What passes for social intercourse for CFS. The ability to

have a relationship with people without having to talk and listen

when you don't feel up to it.

Energy: Not quite sure, I used to know…, something to do with

batteries and lightning I believe.

Energy Budget: The concept that with CFS you have only a limited

amount of energy you can spend in a day (or a week etc.) and must

therefore spend it wisely.

Equivalence: Two hours of classes is equal to 1½ hours conversation

is equal to one slow walk to the shop on even ground is equal to 3

minutes of standing.

One set of stairs is equal to vacuuming the house is equal to one run

for the bus, any of which wipes out a week of anything.

Excitement: A rare state which comes upon you when you experience an

absence of CFS symptoms. Spontaneous reaction is to dance about

ecstatically, however this immediately causes the symptoms to return

and so is not advised.

Excuses: Things you have to have ready to explain why you can't do

the things others think you should. Including investing in their

\l " Miracle Cures " . Excuses work best when they are not sarcastic.

Almost impossible to think up at the spur of the moment due to

\l " Brain Fog " .

Exhaustion: The night a spider drops down from its web above the bed

onto your face and you lie there and watch it walk away.

Failed Patient Syndrome: The way a patient who fails to get better

within a month is made to feel, as they go back to the doctor again.

( " failed patient syndrome' p77 in Louise Samways 'The Chemical

Connection' 1989.) See \l " Good Patient " .

Feels Like: CFS feels like you've got a bad case of the flu, jet lag,

a shocking hangover, morning sickness, altitude sickness, run a

marathon AND been hit by a bus.

Fever: Ranging from a slightly risen temperature which is just enough

to make you feel disgusting, to high, sweaty fevers.

Fibromyalgia (FM): Something which can tell if rain is in the air

within 24 hours or 100 miles. Measurement is in units of pain.

Fibromyalgia In The Hips: Induces funny walk.

Food: Nutrition which must be supplied

· at the right time,

· in the right quantity,

· of the right ingredients,

· takes no time or energy to prepare,

· and (if you're lucky), that you like!

Friends: Body of people who fall away.

Fun: Very tricky, but possible, with a lot of planning, and an eye on

the after effects.

Goals: Something you aim to give up on.

Going Downstairs: Sensation of precariousness due to balance

problems?, inner ear problems?, low blood pressure?... Need rail.

Good Patient: A good patient is one who goes to a doctor, accepts

treatment offered, and gets better. (If only!)

Grief: Natural, painful feelings of loss. Such as: loss of health,

the loss of hoping it would be a short term illness, the loss of

work, friends, income, plans…., at every relapse, and when each

\l " Miracle Cures " doesn't work.

Gut Motility: The time it takes for food to move through the gut. For

people with CFS it is often very, very slow.

Headache: Two hours after the strongest painkillers, torture

instruments are still being used on your brain.

Health Care Card: Something which stops you spending all your funds

on prescriptions.

Home Help: Council subsidised worker of more value than a specialist,

a psychiatrist and a social worker combined. But with CFS harder to

access.

Honorary Degree In Logistics And Planning: Should be awarded to every

person with CFS who achieves anything at all in 3 years of illness.

How are you?: Tricky question.

Human Glutathione S-Transferases (GST): A polymorphic group of

detoxification enzymes. GSTs are multi functional proteins which

protect against carcinogenesis. GSTs have catalytic properties. (A

catalyst is something which facilitates a reaction but is not changed

by it afterward.) This info is needed to begin to read Dr Cheney's

research.

Ice Baths: Treatment option tried by some Spartan or desperate CFS

patients.

" If I Don't Do It, It Won't Get Done " : Painful truth. See \l " Push

Through " .

Increased Sensitivities And Allergies: Itches, splotches, bleary eyes

and breathy gasps develop suddenly and unexpectedly as a result of a

distressingly wide variety of foods, chemicals and anything else

coming your way.

Individual: We have CFS in such variety!

· Your main symptom is pain, mine is fatigue.

· I am best at 10 a.m., you kick in at midnight.

· You see getting a wheelchair as 'giving up', I see it as a

means to a life.

· You relate to some of these definitions, I relate to others.

· My muscles ache at the end of the day, yours start screaming

first thing in the morning.

· You go grey, I go rosy.

Internet: Lifeline, communication channel, information source,

shopping method. (Remember shopping?). Note: The internet isn't very

easy to afford on \l " Disability Support Pension (DSP) " !

Iron: Implement which gathers dust.

Mineral supplement.

(Best not to get these two confused).

" Its All In Your Mind Dear " Stories: Anecdotes which people with CFS

collect. These include things said to them by doctors, family

members, and total strangers. There is a subtle form of this implied

and not spoken, and more difficult to deal with.

Labelling: Once a label has been given to a person, it may be there

for life, and effect the way that individual is treated by others,

eg. \l " Munchausen Syndrome " .

Lactic Acid Theory: That in CFS, levels of lactic acid build up in

the blood after a few short minutes of exercise, inducing pain and

exhaustion. See \l " Massage " , \l " Marathon " .

Let The Games Begin: When you've used all your consummate skills to

get into a school/course/university/employment and you find out that

4 of the 9 buildings you must use are CFS unfriendly and you just

know you have to fight for all the basic rights all over again.

Lymph Nodes: Things which swell to half golf balls in neck and groin.

Management: The elusive goal of people with CFS to while away the

time while waiting for a) Recognition and b) Treatment Options.

Marathon: What a well person has to undertake to experience the

symptoms a CFS sufferer has after running for the bus.

Massage: Athletes have these to eliminate lactic acid build up from

their muscles. This may be why a massage feels so heavenly and so

essential to someone with CFS.

ME/CFS Society Of Victoria: Group of very ill people who try to

support very ill people.

Medical Paper: Something almost unintelligible but especially totally

unreadable when suffering from \l " Brain Fog " .

Medicine Cupboard: A history of trial and error.

Memory: Damn! It's gone again.

Miracle Cures: Anything which hasn't been proved as working, but

which people with CFS are constantly plagued with offers of. They

nearly always cost a lot of money.

Mothering A CFS Teenager: Looking after someone with the physical

demands of a four year old, coupled with the super sensitivities of

an adolescent.

Munchausen Syndrome: Medical name for a malingerer; faking illness.

Given to patients with CFS by those who think medical science would

have picked up something which was really wrong with them.

Munchausen Syndrome By Proxy: Similar but blaming it on the mother.

Given to the mothers of CFS sufferers, who are concerned about the

medical treatment given to their children, and say so. See \l " CFS

Sorry Day " .

Muscle twitch: Looks and feels as if your muscles are jumping out of

your skin.

Mycoplasma: The smallest of all mini bugs. Implicated in CFS.

Neurally Mediated Hypotension (NMH): Lowered blood pressure due to an

abnormal reflex interaction between the heart and brain.

New Paint: Instant wilt for CFS sufferers with chemical intolerance.

Okay: Quick answer to tricky question " How are you? "

Old Age: State of being which even teenagers with CFS can easily

relate to.

Orthostatic intolerance: Intolerance to upright positions. See

\l " Standing Up " , \l " Neurally Mediated Hypotension (NMH) " .

Other Answers To Tricky Question " How are you? " : Kept polite and

short, since they'll need a good half hour if they really want to

know.

" Not too bad today, thanks. "

" I'm crook. "

" Fine thanks. "

At supermarket checkouts they are surprisingly sympathetic to: " I

feel like a grasshopper that's just hit the windscreen. "

Over One Hundred Thousand: An estimate of the number of Australians

with CFS.

Pain Rush: Sensation you get when you turn off pain suppressant

techniques to relax enough to go to sleep. See also \l " Waking Up " .

Pallor: The spectrum of interesting colours CFS faces can often go,

not only pale. Who says Rudolf has to be the only one with a glowing

red nose?

Palpitations: Your pulse is bounding fair like it's trying to jump

out of you, it doesn't have a nice rhythm to it and you swear you are

at least having a heart attack. But… surprise, surprise, it's just

another CFS symptom.

Paragraph Books: Forget it. The page swims half way through paragraph

one.

Payback: What you get as a result of \l " Push Through " . Severe

exhaustion and exacerbation of various symptoms, eg. headache,

nausea, sleep disturbance.

Perfectionist: What you have to be to cope with CFS, since you

haven't the energy or resources to make mistakes.

Politicians: People that you want to contact to explain the reality

of CFS and the need for government support and funding for research

and services. But you are not well enough to.

Pollyanna: As in:

· " I can't work, I feel dreadful every minute of the day, but

at least it isn't fatal. "

· " I have a dreadful headache, I'm so nauseous, I feel like I

have been run over by a bus, but at least I am not as bad as I was

last week. "

· " None of my friends contact me any more, but at least I don't

have to struggle with talking to them. "

Post Exertional Exhaustion: The real name for the fatigue in CFS.

Prognosis: Estimated duration of the illness. In CFS this is

guesswork but these days " experts " hazard a guess at 2 to 5 years (or

shorter, or longer).

Psychobabble Theory of CFS: Widely accepted theory of CFS, now being

challenged by good research.

Pump Up: Something that athletes do before a race to focus willpower

and summon adrenalin. CFS people can sometimes do this to \l " Push

Through " , causing a \l " Crash " , or \l " Delayed Payback "

Push Through: When you know you should rest but keep going. See

\l " Pay Back " .

PWC: American internet shorthand for People With CFS.

Ramps: No better than \l " Stairs " unless you have a

\l " Wheelchair " .

Rash: Something else which some sufferers get and nobody seems to

know anything about.

Re-Challenge: The idea that if you have eliminated foods from your

diet because you had an allergic reaction you should trial it again

later to see if you still get the reaction. Otherwise your range of

foods becomes very limited. See \l " Diet " .

Remission: Time when you have hoped you are cured, but then find out

you are not.

Research funding: Not known in this context.

Respite for Carers: Rare but essential. Has stages:

1st: Urge to cry all the held back tears.

2nd: Urge to spend time talking about the patient.

3rd: Rediscovery that " I used to like doing stuff like this. "

4th: Time to go back and start again.

Respite for Sufferers: There is no respite for sufferers.

Restless Legs: The closest you get to dancing, usually also a

nocturnal pursuit .

Semaphore: What you do with your hands when talking is too hard and

telepathy not quite working. Note: this doesn't work well on

telephones.

Serotonin: The reason so many anti depressants are recommended to

relieve pain and help with sleep disturbance.

Seven Dwarves: Wilty, Fluey, Burnie, Weary, Bleucch, Dopey and (if

you're lucky ) Doc.

Shopping Around: Taking the 'No Junk Mail' sticker off the letterbox.

Shower: Activity after which you need a good lie down and a cup of

tea.

Six months: Amount of time the illness must be endured before you can

even get a diagnosis.

Sleep: Mysterious and elusive. Or forever holding you in its grip.

Sleep Disturbance: Common difficulty, often described as 'tired but

wired'. Lack of sleep then exacerbates all the other symptoms, which

makes everything so hard that you can't sleep.

Smell Overload: The way coping with a strong smell takes so much of

your concentration that you can't hear conversations, put one foot in

front of the other, or think at all.

Somatisation: The conversion of mental experiences or states into

bodily symptoms. Not generally connected with CFS in any way.

Something Precious and Rare: A doctor who understands.

Something Truly Wonderful: A doctor who tries to understand AND does

home visits.

Stairs 1: Obstacle. One flight up takes a full days \l " Energy

Budget " .

Stairs 2: Basic law of physics: the hardest work (ie. expenditure of

energy) is to lift ones own body-weight through a height. See

\l " Ramps " .

Stairs 3: Climb one flight of stairs and you cannot absorb any

information for the next x number of hours.

Standing Up: A sinking feeling. A sensation of wanting to just melt

into the pavement. A quick way to feel sicker. Avoid queues.

Stress: The next person who talks to me about stress I will punch in

the head.

Strict Management: Method of finding limits and staying within them

so that there is no carryover \l " Pay Back " . Limits are extended

only after 3 weeks of no payback.

 

STUFFED: CFS Teenagers group (Victoria): " Suffering Teenagers Unite

to Fight Fatigue and End Depression

Stuffed: The most accurate technical and medical term yet devised to

describe the feeling of exhaustion for CFS patients.

Superheroes: Well people who jump tall buildings. CFS sufferers who

get out of bed in the morning.

I'll bet you thought all superheroes wore leotards - the truth is, we

are just in our jammies. ©KS'99

Supermarket Trolley: Prop to lean on as you make your way around the

aisles.

Symptoms: As in " you don't run through the symptoms, the symptoms run

through you. " Neverending grist for conversation between sufferers.

Some examples are; " Which symptoms do you have at the moment? "

(conversation starter)

and " My joints aren't bothering me so much, but I am getting strange

things happening with my eyes… "

Symptoms List: List some 50 items long which are remarkably

consistent across all sufferers and all countries and evidence that

CFS is not " all in your head " .

Talking: MmmmRrrrrWwwww Can't right now. Try \l " Semaphore " or

telepathy.

Temperature: 80% of body energy goes into maintaining body

temperature, too much heat or cold depletes all energy reserves.

The Cochrane Library: Internet site available to registered users,

usually doctors, so that they can look up a review of papers written

about an illness. The current information on CFS is done by

the " Cochrane Anxiety and Neurosis Group " and weighs heavily on

psychological factors.

" Thingy " : All purpose substitute word when you can't think of the

right one. See \l " Brain Fog " .

" Thou canst take up thy bed and play football " : Media representation

of Alistair Lynch, the football star with CFS who brought CFS to

public attention. See \l " DHEA " . A relapse doesn't attract the media.

Three To One: Epidemiological ratio of female to males who contract

CFS. Is this another reason why research funding is so scarce?

Time 1: Something you have enough of (and I mean enough!).

Time 2: Something you never have enough of. Trying to fit a full days

responsibilities into the two hours you can manage out of bed, and

spending the time in bed planning for them.

Total Bed Rest: Not recommended except when there is no choice!

Toxic People: We all know some. Avoid them.

True Friend: One who can actually hang in there for the duration of

the illness.

Two Hours: Maximum time between meals. Most people with CFS need to

eat a small meal or snack every hour or so. Symptoms are exacerbated

if the meal is not eaten when needed, which results in the sufferer

becoming too ill to want to eat at all (let alone to prepare food).

See \l " Food " .

Unrefreshing Sleep: Waking up tireder than you went to sleep.

Vacuuming: A thing you can't do any more, but come to wish you could.

Victorian Board Of Studies (VBOS): An agency which is so enlightened

it allows, when necessary, CFS students to tackle VCE exams from

their bed.

Visit To A Doctors Surgery: A full days \l " Energy Budget " .

Visiting Teacher:

· Endangered species.

· A teacher who acts as a bridge between home and school and

will fight for students disability rights, devise strategies for not

dropping out and assist with work at home.

· An essential service for CFS students which often takes a lot

of insistence to get.

Vitamins: Something which almost all CFS patients try but there's not

much consistent evidence for which ones work. (We each have our own

collection).

Waking Up: The hardest part of the day. Opening your eyes and

consciousness floods in to tell you what's hurting.

Water: Precious liquid, needed by all bodies, especially sick ones.

· Hard to drink when you feel furry mouthed and nauseous, but

it can make a difference.

· At least two litres a day is recommended (even for well

people).

· Water will cure a headache caused by dehydration!

Water Sipper Bottle: It takes less energy to drink water out of a

sipper bottle than in any other way. They are portable and,

hopefully, not too heavy.

Well Being: A delightful concept. People with CFS have been known to

have it in between \l " Pay Back " , \l " Brain Fog " , \l " Crash " ,

\l " Sleep Disturbance " and the \l " Seven Dwarves " . It is known to be

fleeting.

What's In A Name?: A chronic underestimation of the level of

debility!

Wheelchair: Energy saving device. A \l " CFS Carer " is needed for it

to be any use, unless it is motorised.

'When I Get Well' List: That list in your head of all the stuff

you'll do once you recover; like vacuum, climb Everest …

 

Whiteboard: Reminder device for " to do " lists such that it is easy to

rub out the " can't be dones " .

Wonder Woman Of The Year Award: Occupational Therapist who saw what

was needed and organised hand rails, shower stool, wheelchair, ramps.

Wrote letters to lobby for a taxi pass, and school ramps thus

allowing a real life within limits.

Wooden Spoon To The OT: Occupational Therapist who wanted to talk

about reaching activity goals and was concerned about self inflicting

limitations on life style.

Zone Out: a technique employed by people with CFS to switch off all

mental and most physical functioning to have a rest, even in a

crowded room. Like putting your computer on standby.

Zzzzzzzzzzz: If only.

 

 

The CFS Glossary is available in booklet form for just $2 a copy

from the ME/CFS Society of Victoria

" http://www.vicnet.net.au/%7emecfs/ "

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