Monday, March 11, 2013

Who Is the Real Me? Please stand up.

Many years ago, there was a show on television called "What's My Line?"  I bet most baby boomers remember it.  The celebrity panel had to ask questions of three contestants and figure out who the real scientist studying the life cycle of beetles was, or which boy had a record contract.

As far as I know, I have no panel here, but I have been sick so long that sometimes I feel like asking, "Who is the real me?".  Sometimes, I wonder how much of my staying home has become agoraphobia and how much is the fatigue that goes with Chronic Fatigue Syndrome/Me.  Have you ever felt that way?  Do you feel like being sick has affected you psychologically, or you wonder if it has.  It is hard enough to have physical problems, but to have to fight the psychological affects seems altogether unfair.

I would like to share a comment I made on Holley Gerth's blog post, Your door Is going to open.  

First of all, Holley, I absolutely love that red door. I have been thinking about colorful doors: I may have to add that to my list of want-to-do’s-someday. Secondly, I needed that, and I am absolutely afraid to ask for help from people at church. I’m the minister’s (of music and senior adults) wife, and it is very embarrassing to me I have been a shut-in for several years. I make it to church when I can, but the people here don’t know the real me, the outgoing me, the one that wants to be out and about in church and around our community. There I said it. Sometimes, I think if I had a husband that didn’t have to leave early, I would find it easier to get to church, but is is exhausting. Sometimes, I feel so very alone. I miss having girlfriends to do things with and stuff like that. I miss entertaining and bringing people home for meals. I feel so stuck in this area, but I am hoping that will change.

I don't know how many of you feel like there are portions of life passing you by.  I am definitely in favor of living life to the fullest you are able.  However, if you have been sick for a long time and you have experienced many flare-ups and a lot of total exhaustion, it changes your life.  I don't think other people realize how lonely we can get for human contact, especially if we were outgoing people before we got sick.

The plain truth is that having chronic fatigue changes your life in ways we could never have truly imagined before we were sick.  I hope somebody reads this that is in your life, that does not understand;  because, it is so very hard.
Today, I close with tears in my eyes that our lives have been changed so dramatically.  We are blessed to have the support we have online.  Some of us have become friends with strangers from other cities, other states, and other countries.  We do know people that understand, because they have Fibromyalgia, Chronic Fatigue Syndrome/ME, Lupus, MS, POTS, or the various other diseases that suck away our energy.  

Gentle Hugs to all of you.  I understand.


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It's always lovely hearing from you. xoxo, Deborah