August 25, 2004. I just want to be normal. Last night
I wanted to just be normal, if even for just a little while. I needed to feel as though I have some sort of purpose.
I wanted to do something, anything, to contribute, no matter how insignificant.
So I sat out to prepare a meal. The meal consisted
of boiling a box of mac and cheese and heating up a few hot dogs. By the time the meal was prepared I was
too sick and tired to eat, let alone clean up the kitchen. My legs and feet swelled and felt as though they
weighed 100 pounds each, throbbing with pain. I hurried to sallow three pain pills, two more than prescribed on the
bottle. Three, because one or two no longer makes a difference. The pain remains but I am so drugged it
doesn't seem to matter anymore.
The life of a Lupie is based on weighing each daily
task and calculating how much pain and fatigue will be the result if we decide to attempt a task. More often
than not, we just lay in bed, all day, making up for the day or night before. Seemingly watching TV but
really unable to concentrate on anything as thoughts of what our life used to be take over. Feelings of regret,
sorrow, anger, frustration and uselessness begin to set in. We morn the loss of the life we used to know.
The person we used to be. Depression is a constant no matter how hard we try to make the best of a bad situation.
Our families and friends try to understand but no one,
other than another auto-immune sufferer, really knows or understands our daily struggle. Besides, we try
to cover-up the pain and fatigue because "We just want to be normal".