I know that most of us with chronic invisible illnesses have shared some of the same experiences.  This being said, I am going to share a phone conversation I had this morning.

As many of you know I have not been feeling great during these past few weeks.  I have been experiencing strange headaches.  It actually feels as if my brain is lose in my skull.  And, I feel woozy.  These headaches are not being relieved by my usual "big gun" meds.

I was speaking to a friend who I haven't spoken to in quite a while.  A friend with whom I used to work with.  She called me this morning to see how I was feeling.  I should learn by now to just say "fine."  But I figured since she was calling, she was concerned.  So, I told the truth.

I explained how my body was feeling.  How fatigued I have been and how much my body aches.  I spoke about these new headaches.  And, how they have actually brought me to tears.

Her response to me was that I probably needed new glasses.  While this may be true, I proceeded to clarify my symptoms.  She told me that this happens to her and she just has to wait it out and she feels fine.  She said that her joints hurt her after a long day.  That her memory is not the same.  She said, "Let's face it we are getting older."

During our phone conversation I kept thinking that this woman has no clue what is going on.  That her phone call to me was simply a obligatory call.  At that point I stopped trying to explain my illness.  I decided that it was not worth my energy to speak about this to someone as ignorant as she is.

The sad part of the whole thing is that I was so happy to hear from her.  This phone was supposed to be uplifting to me.  I thought I was past grieving for what has been lost in my life.  I missed my old "friends."  I missed my old life.  In a strange way, I was happy for this phone call.  After it ended I felt relieved.  I felt better about losing my old life.

It made me thankful for those that I do have in my life who understand me completely.  Those who have caught on.  Again, I have to say how wonderful my husband has been through all of this.  He has shown the most wonderful compassion.  He cares for me.  He acknowledges that when I have a headache, it's not always just a headache.  That there can be something more serious going on.  He remembers everything about my illness.  He worries.  He appreciates the effect of my illness.  I am grateful for him and my children.

It's a beautiful autumn day.  The trees are blowing with the morning autumn wind.  Leaves are falling.  This has me remembering a time past.

On days such as today I used to rush to get dressed and go outside with my broom and rake in hand.  My obsessive personality would force me to clean up every leaf that fell.  I would take strange pleasure in seeing a clean sidewalk and lawn.  Happy to view the large black bags filled with the fallen autumn leaves.

Fast forward to this morning.  I can no longer go outside and snatch up every fallen leaf.  I no longer want to.  I am taking great pleasure from seeing all the leaves on the ground.  This is what autumn is all about.  No need for me to rush out and clean everything up.

I believe I have changed.  And, I am sure that this change is for the best of me.  Things are the way they should be.  My life and the leaves are right where they are supposed to be.

Just as I can't change the leaves falling to the ground.  I was never able to get every last one anyway.  I cannot change the path that my life has taken.  Things are different.  Things change.  I now know that I can live with these changes.  I am still ill, but being ill doesn't have to have me.  I will go along with the flow of things the best way I can.

I can rejuvenate my spoons by learning how to use them.  The first and most important way to do this is to learn to accept and not stress.  Life is good.  I am learning to be thankful for what I have rather than grieving over what has been lost. 

The Sunday Seven from Charley

THIS WEEK'S QUESTION:
Of the movies in your current DVD or VHS collection, name seven (in no particular order) that you have watched enough times to make your friends suspect that there might be something wrong with you but that you can't imagine not watching again.

I got this from Dawn's journal Carpe Diem - Seize the Day

1.  The American President

2.  My Cousin Vinny

3.  Pretty Woman

4.  Moonstruck

5.  Uptown Girls

6.  Steel Magnolias

7.  Something to Talk About

Okay, I admit it, I am hooked on Julia Roberts' movies.

 

I can smile

I have realized that I am the only one that can change the way I look at my new life.   It's very odd because when I was healthy and worked like crazy all I wanted was free time.  My life was fast.  Everything was done quickly.  I had no time for ME.  I worked.  I came home and did everything around here.  I slept and woke up and played the day again.

   

Now I have all this time on my hands and was feeling bad for myself.  I made excuses for these feelings.  I believed that I was allowed to wallow.  But, in my wallowing I lost a huge part of me.  Yes, things are different now.  My energy level is minimal.  I hurt constantly.  That still is no excuse to think the way I was thinking.  My life is changed but that doesn't necessarily mean it has to be over.  There is still life in me.  I have to start to concentrate on me.  My children are pretty much self sufficient.  Everyone has their own things to do.  I will find mine.

                 

Maybe I will write.  Maybe craft.  Whatever.  I cannot defeat this demon Lupus but I can control how it makes me feel.  I can smile. 

      

Tagging

1)   Go into your journal archives.
2)   Find your 23rd posting.
3)   Go to the 5th sentence of that post.
4)   Re-post the text of that sentence, with a little explanation.
5)    Tag 5 other people to do the same.

I am inept and ill chosen in spirit to handle this weighty thing that has been pressed upon me. 

This is from my journal entry of  Sunday, February 27, 2005.  It was one of those times when  I was feeling overwhelmed by my illness.  These days (weeks) come and go.  There are times that I am up and times that I am down.  This is the life of a Lupie.

Let's see who I can tag?  How about.....

Karyl

Christina

Jazz

Jackie

and Loretta Life with Lupus

Have some fun.  It's pretty interesting to go back and read some of your past journal entries.

MY NAME

Could someone tell me how to make sure that my name doesn't come up as a spelling error? 

I am pretty positive that I am spelling my name correctly.  Although lately, my mind has been empty.

Do you know what it's like to be alone all day?  I'm so lonely.  No one to talk to. I used to be the type of person who had loads of friends.  I was the one who would talk to everyone and anyone.  I did have two very good friends.  But, unfortunantely, as I grew sicker my friends grew more distant.  It's a common thing for people to disappear from your life when you are going through an illness.  Especially when you have a chronic illness.  I changed.  My illness changed me.  My emotions are changed.  My entire life is changed.  I no longer can do the things I once did.

I am very lucky to have a loving family.  A husband who cares for me without thought for himself.  He has proven time and time again that his love for me is forever.  For this I am grateful.  I am proud to be his wife.  My children are loving and I am proud of them.  But, they go about their business.  And, well they should.  I would not expect anything else.  I am not one of those mother's who want their lives to stop because mine is different.

It has just be hard for me to find my nitch.  A new nitch.  I am not complaining.  I am just thinking how much different things have become.