Sunday, September 26, 2004

Living a Double Life Part 1

I find myself increasingly in a life with my feet planted in two different realities.

There is the “Real World” (nope…not a tv show…lol!). The Real World is the world that many of us spend a lifetime convincing ourselves that we belong there.

This is the world of attachments, responsibilities, linear time, relationships, work, and recreation.
Then there is the world that I have slammed into in the past few years. This is the world I tried to avoid at all costs. This is the world of chronic illness. In this world I no longer exist as a professional career woman. This world is empty of trivial relationships that sap energy. This world forces me to look at life through sparkling clear eyes that have been cleansed by knowing teeth gritting pain on a daily basis.

In the world of lupus, the struggle every morning is not waking up to the alarm clock, diving into the shower, chugging down a cup of coffee and heading off to a full day of work at the office or home.

The alarm clock rings and I sleep through it. I never fell asleep until 3:00 am. I was wracked with abdominal pain that would not allow me to lay down and fall into a coma sleep.

I am gently nudged awake by my Hubby. A gentle soul, he would let me keep on sleeping, but he knows how important it is to me to wake Little Bear, and prepare our child for school.

The heat from a shower or bath leaves me weakened. My legs shake like a runner’s after a marathon, my hands tremble and will not co-operate, and my mind slithers into a dense fog of fatigue from that wonderful morning ritual of cleansing. I wait for bathing until everyone has left the house. I have to plan to lose half the day to recuperating from a hot shower or tub soak.

I love coffee, but I can not chug anything in the morning. My mug of coffee lasts from 7:00am until after noon.

I have to take 6 to 7 pills every morning in order to keep my body working. The pills also keep the lupus at bay, hoping that we can prevent further damage than what has already been done.

Before the pills, some food needs to be eaten. Still achingly sick from sleep deprivation and nausea, I have to chew on toast . I try to ignore the nausea while I get dressed and take Little Bear outside for the bus.

We go outside early so I can enjoy the fresh air with him before the sun starts beating down. Even so, I am under a huge golf umbrella that brings in a lot of curious stares from the early morning joggers and schoolchildren on our street.

Then the pill taking ritual begins. That usually takes 30 to 45 minutes. I often gag from throat constriction and once in awhile I throw up. That really screws up the day because you have no idea how much of the dosage got into your system before the pills and toast decided to run away.

I am heading nowhere as the remainder of the neighborhood enters the daily rituals of the work week. I have to wait an hour or more for the medication to begin to release me from the pain.

That is my time to write.

I don’t know what the day will bring. I make many plans, to do the dishes, to write back to my pals, to organize a cupboard, maybe spend some time enjoying a novel. Ninety-nine percent of the time… those plans fall apart. Some faction of the lupus decides that today is its turn to rebel.

Wham, my legs won’t work today, Pow, my mind can not grasp language…so no reading…not even a phone conversation…Zoom, I can not stay awake, but I can not fall asleep…my mind refuses to grant me a break…so I sit and play cards…or just stare off at the room.

I have learned to avoid looking out the windows on days like this…seeing the sunshine and the green grass only makes me cry…wishing I could sit out there and let the sun kiss my face. I am learning to avoid despair. It wastes precious energy.

This quiet time between 8:30 am to 3:30 pm is the daily spiritual journey that opens the mind to places you can not visit in the noisy Real World without concentrated effort.

I have time to think. I spend hours worrying over a little prayer notebook, making sure I have not missed anyone…even when your body freezes up on you…you can still pray.

I watch our pets. Furry friends that were often taken for granted when I was still living fully in the Real World. Now they are my lifeline. They gather around me ; doggy at my feet, one kitty on my lap, the other snoozing under the computer desk. They embrace me with their unconditional love. Eager and bouncy when I am playful and bored, quiet and gentle when I have to take to the bed.

I am learning about reverence towards all living creatures.

Lupus is a unrelenting teacher.


thebaabee said...

My Sweet Friend........ How I ache for you.  How I know what you are going through.  How I hate Lupus as much as you do.  Love you so.....Lu

kgreenb101 said...

Wow, your journal is amazing! You have a tremendous amount of courage, I applaud your struggle and your passionate writings! God bless you! You are an inspiration to us all!!!! Keith

ladyssigh said...

KGreenb101 sent me this link to your journal as I'm struggling to live with Lupus as well.  It's a terrible disease that seems to attack without rhyme or reason.  It's hard to make people understand, as well - they don't see it as a serious disease because it receives so little attention from the medical world (and is that because it's primarily a woman's disease, or because black women. esp. are affected?  I dunno - seems suspect to me, at least).  Right now, my only goal is to get through the day without crying.....
Keep goin', girl - and I'll be keepin' you in my prayers..

derasta said...

I appreciate you explaining what your days are like, I really didn't know what the effects of lupus had on a person and now I get a glimpse of it...thank you for sharing that....

lrttklly said...

Hi Ladyssigh,
      I wish I could send you a hug through this internet line... (((((gentle hug))))).
      I am so very sorry that you are suffering so with lupus.
       Yes, lupus is not getting the attention it needs from the medical researchers. I mean... think about it... most major fundraising in the US is done by a celebrity advocating for awareness and more research.
       Any celebrity with lupus is not going to be working for long, nor having the energy to advocate.
    Just my opinoin... but, if you hang around long enough at my journal... you will find I am very opinionated...LOL!
    Are you aware that AOL offers online support for people with lupus? We have a Message Board and Chatroom. Here are the links:

General Discussion

Lupus Support
You may want to consider popping over there for a bit to see what you think. There is no need to suffer alone. There are lots of us lupus folks out here to meet.
     Many blessings to you.