How to Explain Lupus to Friends .. with Post-It Notes

[Guest guest]

How explained lupus

to her family and friends using post it notes.

Lupus

and Post-it®

Notes

Post-it® Notes

The difference between being healthy and having a serious

illness is not about being physically different, but having a different mind

set. The difference is in how we make the choices in how we live our daily

lives.

I have a friend I will call Shirley. She is wonderful

person, is healthy physically and has a wonderful mental outlook on life. She

brings sunshine to work every day.

One day

she and I were discussing how long it took to get ready for work. She laughed

and said, “I am the ‘Queen of Snooze Alarms’. I can get ready

in about ten minutes and be out the door.”

“I envy you,” I said. “I wake up at 5 am every day so I can be ready to

leave the house by 8.”

She seemed surprised by my statement and asked,

“Why does it take you so long to get ready?”

I just smiled and said, “Between the Diabetes, the

Asthma and the Lupus, every morning I have to fight the wolf before I leave the

house.”

“Normally, a person gets up in the morning, goes to

the bathroom, brushes their teeth and hair, gets dressed and eats breakfast.

The only choices a healthy person has to make are ‘What do I wear

today?’ or ‘What cereal do I have today?’” I said.

“Not me. I fight a battle every morning.”

Shirley just looked confused. I thought of all people she

would understand what I go through living with Lupus. She and I talked all the

time. We discussed my doctor’s visits and lab work. She had even had to

take me into the emergency room when I collapsed at work.

I realized then that if she didn’t have a clue

about how I really felt, how could I expect anyone

else to know. I needed a way to explain to her so she could understand.

I looked around for a minute and then handed her a stack

of Post-it® notes. “Here. Now I want you to write out what you do in a

single day, but just write one thing on a note, then go to the next. Just go

till lunch.” After a few minutes, she said she was done.

I took her notes from her and proceeded to go through

them one at a time.

I looked at her and showed her the note. “Wake up

and go to the bathroom.”

Not saying a word, I added to her note:

Try to

get out of the bed to reach the clock. Realize you are late because you

were ill the night before and didn’t get to sleep till after 4 am.

Wait

for the pain to recede so you can stand up to reach your inhaler.

Use

inhaler and hold onto dresser for support as you try to breathe.

Take a

step and wince as your leg muscles spasm.

I had run out of room on her Post-it®

note and continued on another one.

Holding

onto the wall, hobble to the bathroom hoping you don’t wet your

pants because the spasms are now flowing over your entire body.

Reach

out and pull oxygen tank into the bathroom with you.

Sit on

toilet and do a breathing treatment while going potty (anytime you can

accomplish two tasks at once – do it!)

Try 3

times to stand up as your knees won’t straighten out to allow you to

stand.

So now instead of one, I

handed several notes back to her.

I took her second note and read, “Take a bath and

wash hair.”

To this one I added:

Slowly

undress as your back is now having spasms so badly, you are unsteady on

your feet.

Hold

onto the wall, bracing yourself as you lift your knees so you can step

into the tub.

No bath .. only showers .. you may not be able to stand up after taking a bath and

will be stuck in the tub.

Realize

you cannot wash your hair this morning as you cannot get your arms above

your head.

Rinse

off without getting your hair wet as you know you won’t be able to

dry it.

Dry

off in segments of time… resting in between wipes, sitting on the

toilet seat to rest.

I handed her back more notes.

Her third note read, “Brush hair and put on

makeup”

I added:

Attempt

to brush hair and realize you will have to leave it till later as you

still cannot get your arms above your head.

Put on

sunscreen even though you work inside. Fluorescent lights at work make you

ill because they give off UV rays and Lupus makes you photosensitive.

Put on

minimal eye makeup as you realize you are shaking too badly to hold the

mascara steady.

By this time, I can see by

her expression that Shirley was beginning to understand. I take her fourth note

and read, “Get dressed and put on shoes.”

To this one I added:

Steady

yourself and sit on bed while you catch your breath from taking a shower

and wiping dry. Put on oxygen if fingers look a bit blue.

Test

how well your muscles are behaving now. Are your joints able to bend yet?

Realize

that you still cannot make a fist as the joints in your fingers are still

too stiff.

Spend

almost ten minutes getting your bra on because you cannot fasten it from

behind and must fasten it in front then turn it around.

Pick

out a pullover blouse instead of a blouse with buttons as you can’t

do buttons this morning.

Sit

down to rest in between articles of clothing to catch your breath and to

allow the muscle spasms to slow down before putting on next article of

clothing.

Allow

yourself five minutes between each article.

Sit on

bed to pull on jeans, and then realize you can’t zip them as your

fingers won’t close on the zipper pull. Take them off and sit down

to catch your breath.

Five

minutes later, pull on elastic band pants.

Realize

feet are swelled today, so that means no dress shoes.

Wear

the Velcro tennis shoes today as joints won’t allow you to tie

shoelaces.

Getting dressed took 10 notes

to accomplish all the tasks.

As I reached for Shirley’s 5th Post-it® note, I

realized she was crying. “Stop.” she said. “I can’t

take anymore. I never realized how much I took for granted. How do you live

like that?”

I

smiled and told her, “It's not hard once you get used to respecting time.

This is how I live. I have to make choices. If I need to do something, then I

must allow extra time so I am able to finish the task. If I want to do

something fun, I must weigh the results against the energy and pain involved in

fulfilling a trip to the mall or a walk in the park.”

“I have to measure how much time I spend in the sun

going to and from my car to the house and into work. I know that I can

withstand only 10 minutes in the sun before I begin to break out in a rash. I

know that if I stay in the sun longer than 20 minutes, the UV rays will trigger

several days to a week of pain.”

“I have to put special lens on my computer to

filter out the UV rays put out by the monitor. I have to put special filtering

lenses over the fluorescent lights in my office as they too give off UV

rays.”

“My whole life is making choices

and exchanges. Is ten minutes standing in the sun at the park watching my dogs

play worth the hours of pain I am going to endure from the lesions that will

break out on my face and arms?”

“If I want to go to a party, I must plan ahead and

take extra prednisone to ward off any allergic reactions to someone’s

cologne and to keep me breathing so hopefully I won’t have an asthma

attack. I must remember to not take any pain meds in the morning so I can

drive.”

“My life is literally filled with Post-it® notes. I

couldn’t survive without them. My short term memory was damaged by being

on a ventilator from an allergic reaction. My memory is also affected by the

Lupus. Some days are good, other days I need to put a Post-it® note on the dash

of my van so I will remember where I am supposed to be going.”

“I have a map in my van made from a large Post-it®

note showing the main streets in town so I won’t get lost. Even though I

have lived here all of my life, I will be driving, come to a stop sign and will

forget which way to turn to get home.”

Shirley looked so sad. “I think I understand a bit

better. I don’t know if I could live like that.”

I smiled, “Yes, you could. I can. There are a lot

of people in the world living like this. I am not the only one with Lupus or

another severe illness.”

“I live life, have fun, work, and have wonderful

friends. I just use my time differently than most people. I am aware of how

much time I am allowed and don’t waste it on

post-it notes that I know I cant start -- let alone finish.”

Shirley gave me a hug and said, " Now I

understand. " I don’t think she really understood completely just how

much time is involved in living with a severe illness like Lupus. I don’t

think she truly understands, but it’s a start.

I hope she understands that when I do get to spend some

time with her, the time is special to me as I have put her name on a Post-it®

note.

At least now maybe she will

understand and not complain when I say I can’t meet her for lunch or to

go to the mall. It is not because I don’t like her, but is because I

literally have run out of room on my Post-it® notes.

© 2002 “Rion” Sewell

Hugs,

Deanna