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If you only knew what it feels like to be me, you would never ask questions, complain or wonder again.  You'd learn to limit your expectations and you would always have a back up plan.

So let's see if I can explain it to you.  You know how your body feels when you've got a high fever?  That achenes and heaviness that permeates your muscles and joints?  On a good day, that's how I feel.  I ache from my chin to my toes.  If I've been doing all the right things, such as being careful with my diet, taking my medication, and getting just the right amount of exercise, it doesn't get any worse than that.  I've learned to live at this level of pain.  On a scale of 1 – 10, you would call it about an 8.  I call it "normal" and call it a 5.  A pain level of 5 is the best that I can hope for.

But let's just say that I've run out of my medication before our insurance problems are resolved.  Or that I've started to let the stress of being unemployed get to me.  Or that I'm mad as hell at you and don't know how to express it without it escalating into something ugly.  Maybe I splurged the day before and ate a hamburger.  Any of things will push me up to a pain level of about 7.  Now my legs feel too tired to hold me up if I try to stand.  Walking down the stairs is painful and difficult.  My balance starts to be challenged, and my left leg might just start its sexy little dance.  At this point, I've got two choices.  I can take a hot bath and go right to bed, or I can keep pushing myself and try to ignore the extent of my pain and overwhelming fatigue.  More often than not, I'm dumb (or stubborn, or whatever) enough to keep pushing myself.

When I go to bed for the night, things get really interesting.  My legs start to demand to move and don't want to be still.  Then the pain starts to escalate.  At this point, I realize that sleep is out of the question.  It doesn't matter how tired I am, I won't be able to sleep.  It's only just begun but there is nothing that I can do to stop it.  My muscles feel like they are clenching and tightening with no release.  

Usually at around 2 o'clock, I turn the television back on and settle in for a long night.  I get up and pace because if I don't move, I'll explode.  It seems as though my pain level increases by the minute until I'm hitting a pretty steady 8 or 9 on the pain scale.  The tears usually start now.  The tears and the questions together.  

The best way to describe the pain now would be the pain of overworked muscles.  If I've climbed a mountain with a 60 pound pack in the heat of the day, I couldn't hurt more.  Every muscle, joint and nerve in my body is exhausted.  They each scream out in agony and remind me that I am not whole but am inherently defective.  I begin to doubt my ability to function in this world and wonder when it will ever end.  Is my life destined to be filled with pain and agony?  Is this all there is in my future?

I question God.  I know, logically, that it is not proper to question Him but I can't seem to help it.  I find myself wondering how this can be a part of God's plan.  Where is His wisdom in all of this?  I used to think that there were lessons to be learned and that this illness was given to me in order to teach me patience or strength or to recognize my own limitations.  Now?  I don't think that it's part of lessons or plans.  I often wonder if the purpose will be shown to me at some time.  Or is it punishment for all the wrongs throughout my life?  

At around 4 o'clock in the morning, I get so tired that I have to sleep.  At this point, if I can usually doze a little bit.  I fade in and out of consciousness until about 6:00.  Then I give up and get out of bed.  When you get up and start complaining about how bad you feel or about how you didn't sleep worth a crap, I try to be sympathetic.  I try really hard not to roll my eyes and blast you for being an inconsiderate hypochondriac.  I help our son get ready for school and do other minimal little things until I feel like I'm going to drop.  And then it's back to bed, where the choices must all be made again.  If I stay there until I feel human again, the pain will lessen over the hours and the next day will be better.  If I continue trying to muscle though it, and meet everyone elses expectations, I'm in for a repeat of all of the above steps.

This has become my life.  I can choose to accept it and try to make the best of it, or I can let it beat me.  By beating me, it will either kill me or make me insane.  So every day I make a choice to fight; to become more than a patient with a horrible life-limiting illness.  Some days I feel strong enough to live through all of this and other days I wonder how anyone can be expected to live through this much pain and exhaustion.  Regardless, the sun will rise again tomorrow and I will try to get up and function like a whole person.  That's about the best I can hope for.

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Member Comments

    • 0 votes vote up vote up

      Suzann wrote Sep 26, 2010
    • Queenbee, my prayers are with you. I don’t understand about suffering either, even why it exists. I wish the very best for you and a life free from this pain.



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    • 0 votes vote up vote up

      Vikki Hall wrote Sep 26, 2010
    • Qbee I am so sorry for your pain and all that you go thruheart



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    • 0 votes vote up vote up

      Jo46 wrote Sep 26, 2010
    • Queenbee-I pray that there are better days ahead for you.



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    • 0 votes vote up vote up

      Linni wrote Sep 26, 2010
    • QueenBee, your post sounds like my days and nights on a regular basis! i know what you go through and how you feel...(the illnesses may be different, but have the same results ) i will keep you in Prayer heart



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    • 0 votes vote up vote up

      Cynthia Schmidt wrote Sep 26, 2010
    • I echo what the other ladies here have said. And, you can always express how you feel and what you‘re going through here. We may not be able to remove your physical pain but we can offer you emotional support and understanding.



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    • 0 votes vote up vote up

      Rose Nino wrote Sep 26, 2010
    • I am with you as well Queenbee. AND believe me, like Linni say’s, I to know how you feel. For I have been there myself. Please, please know that you are in my thoughts and prayers. heartheartheart



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    • 0 votes vote up vote up

      Cheekymonkey wrote Sep 26, 2010
    • Dear Lady, I am triely sorry for your pain. I know how that makes you feel. On one hand your so grateful and full of love because you can feel the love and concern even the prayers by all of us. And on the other hand you want to scream....at no one and evrryone. This is where your path is now. Unfortunately , our paths of physical and mental pain because they do go hand in hand are our own...noone walks the same BUT what we all do walk is our compassion and willingness to always be there....thats HUGE and I know! So, vent,cry laugh be mad we...I will be here for you with comfort,love and support. That really counts that including yourself are here for women we might not know or that we are not going through the same things but we are a constient you and all of us can count on.
      And you get up to face a new day that shows your a strong,coragous,brave women.
      You are in my prayers and when your at your wits end write we will answer.
      Hugs to you,
      Cristen



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    • 0 votes vote up vote up

      Marya1961 wrote Sep 28, 2010
    • We need to exchange phone numbers as we are mirror images of each other...there are days when getting out of bed is a chore and other days I can conquer the world...I feel your pain and will say a prayer for you, if you feel the need to talk, message me.heart



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    • 0 votes vote up vote up

      Queenbee wrote Sep 30, 2010
    • Thanks, ladies for the kind words!  I’m amazed by the outpouring of love and support that I’ve received and appreciate each and every one of you!
      Thanks for sharing this piece of my life!!
      B



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