THE TOXIC FATIGUE OF LUPUS

[Guest guest]

THE TOXIC FATIGUE OF LUPUS

BY GLORIA ROSENTHAL

Almost all lupus patients have heard the phrase

" But you don't look

sick " and we cringe inside, knowing the speaker's words do

not convey

the speaker's true meaning: " You can't be so

sick if you look so

well " .

The fatigue that comes with lupus elicits the

same reaction. Try to

explain the feeling to a friend and the response is often " I

get

tired, too " . I want to pounce on those words

and say " tired? You get

tired? I want to screech that the fatigue that comes with lupus

is as

unrelated to a " tired " feeling as a hang nail is to a

broken arm.

Calling toxic fatigue a tired feeling is like

saying a major flood is

a minor trickle of water.

So let's talk, first about what lupus fatigue is

NOT. It is not a

tired feeling. It's not a " want to take a nap " feeling.

It's not

a " lazy day, think I'll take it easy " feeling. It's not

a " wish I

didn't have to do this " feeling. What it is: is a full-body

exhaustion that makes you feel as if you have no bones, that if

you

didn't have skin wrapped around your body, you

would melt down into

nothingness like the Wicked Witch of the West. Or

that you are a

melting candle, except a candle has a wick and there is nothing

in

your body that feels that solid. On the other

hand, your bones can

feel so heavy that lifting your arms to wash your hair in the

shower

is a chore akin to a weightlifter hefting a 200

pound barbell. His

task is easier, though, because as soon as he puts the barbell

down,

he's through. But after you've soaped your hair,

you have to rinse

it. That means those bone-weary, heavy arms must be raised again

and

after the shower, these " barbells " must

be toted around all day long

for they cannot be discarded like the

weight-lifters toys.

Eating too, is an exhausting habit, especially

restaurant dining.

There must be something in the atmosphere and a

three course meal

that makes the lupus body say. " Hey hold on there, why are you

lifting a fork so many times? " or " You broke off one

piece of roll

and now you want to exert that physical activity

again for another

piece? "

The toxic fatigue of lupus also forces you to

make major decisions.

Will you make yourself a cup of tea, which means

dunking that heavy

teabag, or settle for a glass of water - and how many ice cubes

can

you use without making the glass too heavy?

Am I exaggerating? Of course, but just enough to

get a point across,

a point that the fatigue that accompanies lupus is not like any

other

feeling. It is indescribable, but I know that as

these words are read

by my fellow lupoids,

heads will bob up and down in instant

recognition, though that frantic activity (head

bobbing) will create

yet another bout of exhaustion.

How do I handle this extreme exhaustion? If I'm

home, I get into bed

when it hits though the toxic feeling that accompanies the

fatigue

makes me think that once I do that, I will never

be able to get up

again. However, experience tells me I will come

out of it and will

feel better when I do. I never refer to this melting away as a

nap;

it's my afternoon " coma " and my husband tells me it is

almost

impossible to wake me. If he must do so, it some

times takes ten

minutes of gentle shaking (and maybe one minute of bulldozing

tactics).

If I'm not at home when it hits, and I push

through it from sheer

will, it will be with me for the rest of the day. Even if I give in

to it later, even if I crawl into bed after it has been with me

for

hours, I will not shake it. Years of dealing with

it has taught me

why this is so: the fatigue that comes with lupus

hits hard and wants

to be pampered but it knows, better than I do,

just how much coddling

it needs. If I bow to it, I'll revive. If I

don't, the fatigue shakes

its finger in my face and says " Okay kid, you asked for it;

now it's

the rest of the day for you " . And so for the

rest of that day, I am

that wicked witch, that melting candle, that weightlifter. I try to

work around it. I tell my good friends they have to pick up for lunch

out. If I drive to them in the morning, later, with fatigue as my

passenger, I will have a foot that's too weak to depress a brake

and

arms not strong enough to turn a wheel. Some

people understand, some

never will. Perhaps this will help the ordinary fatigued person see

that there is nothing ordinary about lupus exhaustion. I'm glad

I'm

finished here, because my body is warning me that

a bout is coming

and I'd better be going. My bed looks inviting

and my fatigue will

thank me for " putting it there " by giving me a few good

hours later

on.

Much Love,

Deanna

LUPUS Serenity Prayer...

Lord,

grant me the serenity to accept the things I cannot change, the courage to

change the things I can, and the wisdom to hide the bodies of doctors I shot

when they said, You're perfectly healthy, it's all in your head "