Saturday, September 14, 2013

One Extreme to the Other!

Fall air came in Friday morning! It went from one extreme - mid 90's - to low 40's at night. Today it was 65 degrees at noon. I LOVE the cooler weather, but this extreme knocked the wind out of me. It changed so quickly that my body couldn't adjust. I ended up in bed for the past two days. Can't wait for the cooler temps to set in for the season and stay. Want to be able to go outside, start walking again and build up my system. Since I've been slowly deteriorating, the walks will be short.

A few weeks ago someone made the statement "lupus is not a social disease." She's a nurse and very familiar with its damage. What she meant was that with this disease, you can't plan ahead. Every day is different. When you stop, you stop. When you're swollen so badly you cannot move, you stop. When the pain is so extreme you cannot function, you don't sleep. When you don't sleep, you cannot have a normal day. Normal? Where did that come from?

When you can't get involved in activities like most people, they tend to forget you. What she should have said was lupus is a lonely disease. If people don't understand, they don't ask. They just avoid. Unfortunately, people are the same everywhere. Just like in Alabama, many days pass that I don't see another person. It is on days like this I am so sick I can barely walk across the floor. It is on days like this I need a friend.

Some people are uneducated by the illness. They react - withdraw as though it is contagious. It isn't. But instead of finding out, they walk the other way. Have experienced this for many years now.

Then there are those who say I don't have enough faith. That's why God doesn't heal me. Those I categorize as ignorant. They did their damage along the way until God taught me that people are more concerned about themselves than anyone else. Easier to point a finger and blame me.

Oh horrible disease, why did you have to claim my life after my brother's death? The extreme stress of caring for him, caring for my dad and working full time pushed my body to the brink. Why did you have to rob me of so many possibilities by the time I turned 35?

Where most are so concerned about their own lives, family, home, work, inner circle, I am thankful for the one person who steps out of that circle and understands. Where most are too busy to care, I am thankful for the one who does care. They are few and far between.

At this stage of my illness, I cannot get involved in different activities because my body simply will not hold up. I cannot dive into a world of "busy" life because I cannot function. So I have to rely on my faith. Once my eyes open in the morning, prayers are said and I attempt to get out of bed, this horrible disease determines what kind of day it will be.

It is definitely not a socially welcoming disease. It is a lonely one.

 

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