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 Brenda “Rion” Sewell


Thank you 3M for developing Post-it® notes! They are part of my life-line.
 http://www.3m.com/us/office/postit/



Contact the Lupus Foundation of America or the local Chapter that serves your area for more information about lupus, or the programs and services the LFA offers including support group information and physician referral.

Lupus Foundation of America., Inc.
1300 Piccard Drive, Suite 200
Rockville, MD 20850-4303
301-670-9292  800-558-0121
http://www.lupus.org
 


Searching for ways to deal with the depression, the frustrations, the questions about lupus, I joined a support group online.  LUPIES has been a wonderful gift.  I have learned more from the information I found on the support web site from other sufferers of Lupus than I did from my doctor.
Thank you fellow Lupies!    May your days be pain free!

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All literary works and original artwork by Rion on this page,
unless otherwise noted, are the sole property of Brenda Sewell.
I do not mind sharing but please ask me first.

© 1998 - 2004 Brenda "Rion" Sewell

Email me at brendarion at cfl.rr.com

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