the REAL cost of Lupus
by, 10-30-2012 at 06:48 PM (6834 Views)
What do I mean by the real cost?
Lupus costs in every way!
Lupus causes us many difficulties.
Lupus causes us many hard ships.
Lupus causes our health to fail.
All of these things are a cost of having Lupus.
These are not what I am referring to.
As humans we identify people by there traits and personalities.
We say this is a kind old woman,
Or he is a grumpy old may.
Even she is a busy body.
These traits make us what we are.
We prefer to associate with people who have likable traits.
These traits and the modifying of them, is the real cost of Lupus.
I am not the person I used to be.
This simple line has been the excuse for many arguments.
But for me it is the truth.
Lupus has changed the way my brain reacts.
Lupus has modified my ability to be me.
I used to be a happy easy going person.
As my world was taken away from me, I began to hold on to anything I could control.
This sounds harmless enough.
It usually is.
But when more and more is removed, you hold tighter to what is left.
Today my abilities to use my brain are very modifies from what they used to be.
As growing adults, we expect to learn and become better people.
Lupus has caused the opposite.
My ability to have emotions has been compromised.
Now the only emotion I have is extremes, either good or bad.
There is no ˝ way. There is no slight rising of emotions.
There is only on or off.
My ability to reason has been compromised.
Any judgement that is against what I am trying to say, or be, is now a personal attack.
I am unable to calmly discuss differences of opinion, which effect me.
I hold on to me so closely, that any difference of opinion is seen as an attack on who I am.
Add this to my emotional on switch and sparks fly.
My ability to sit back and let others take control is also compromised.
I am happy to sit back and let others work.
I am happy to sit back and watch others play.
But challenge my way of doing something, and I will interrupt you and try to take over.
I have only been diagnosed with Lupus for about 3 years.
But I have suffered from it for about 35.
I have had it defining who I am for all of those 35 years.
But I did not know it. I was unaware of my Lupus, and what it was doing to me.
Last week the real cost was brought home to me in a very real way.
I have known my wife for over 30 years.
We were young lovers, way back then.
Circumstances drew us apart, but we were to reignite our relationship.
It took about 12 years for our separate lives to cross paths.
I had just left the Airforce, and she had just left her husband.
That was almost 19 years ago, and today we are separate people again.
Lupus is the cause of our relationship demise.
My children still love me deeply; they just cannot live with me.
My wife has grown hard to my indifferences.
She does not understand the new me, and dislikes this new person.
For years she has seen the changes, and accepted them.
But eventually the old person dies, as Lupus takes over.
This new person does not understand how to do many of the things, we as interacting people need to co-exist.
I have lost the ability to communicate with small talk. I no longer understand it, and cannot continue to engage in it.
I have lost the ability to communicate through emotions; I cannot sit quietly and enjoy a beautiful sunset with someone.
I have lost the ability to see someone else’s point of view, if it differs from mine.
I have lost the ability to use and see personal queues. Subtle queues are no longer evident to me.
I have lost the ability to be me.
I need to learn how to overcome what lupus has changed.
I need to learn how to be me again.
Life is a journey…..
It starts with 1 step.
Today is my first real step.