Friday, March 29, 2013

A good life put on HOLD

When the Doctor diagnosed me with Meniere's Disease, I had only a small inkling of what I was in for.  At first I felt relief.  Finally I knew knew what was wrong with me and that it wasn't something that was imagined in my head.  Now I'm not sure what to feel.

I promised I would never lie on this blog, so here goes.

My life sucks.

I went from fully independent, fully functional, fully mobile to being unable to drive, sleep, get around and do simple tasks.  I force my self to eat because I must, not because it fills hunger.  It's hard to eat when you feel like throwing it right back up.  My world is sloshy, tipsy and the headaches are unbearable.  I'm considering on buying a cane.  It's hard to get around when things like walls and door frames are always a colliding hazard.

I'm finding it difficult to be a mother.

This one kills me.  Happy, dance in the kitchen mom is gone.  Go on vacation and hikes mom is put on hold.  Hell, it's all I can to do to make dinner and sit through it without passing out.  "Race you up the stairs" has turned into "I need you to help me up the stairs".  My bone crunch hugging boys don't dare touch me anymore for fear they may make it worse.  I'm having difficulty writing my books, siting to paint or doing anything that I love and crave for creative release.  The light has turned of in my head and all that is left is fog.

This isn't curable.  There is no fix.  And worst of all, it isn't terminal.  I so wish it were.  I'm 33 and I feel like I am 80.  How long am I going to live like this?  Another 30, 40 or 50 years?  Endure to the end never sounded so eternally long!   It's as if God said, good job, girl!  You're so healthy and strong!  And Satan replied, Not so fast.  She can't have it that good.

How am I going to live with this?  I'm not sure.  Somewhere there has to be an answer, some sort of relief that isn't a .9mm shot to the head.  Until then, I'm going to keep forcing food down my throat.


  1. I feel your pain. Really. My fabulous WunderGuy was diagnosed with a brain tumor while still in his 20's. In a single second, when his first seizure hit, both of our lives changed. He had brain surgery, but, like you, he will never be back to the way he was. He hasn't driven in over 10 years, can no longer work, still seizes, has constant hand tremors... and yet... And yet:

    He is my hero. He's a wonderful father to our daughter, a great husband, and a genuinely awesome human being who takes daily strength from the fact that this world is only a proving ground. It's only temporary. We are never promised a life without pain. In fact, often, we have discovered, it's the heartache and fear and difficulty that forces us to grow faster and better than we did before tragedy struck.

    None of this, of course, makes living with or coping with a debilitating condition any easier. Hugs and prayers to you and to your family. You've got a long road ahead of you. One day... one moment... one breath at a time. You've got people who love you and who will help you through. I know you feel sidelined now, but I have no doubt that you will find a way to put your chin up, soldier on, and charge back into the fray. 'Cause you: you're my hero, too.

  2. So sorry you have to go through this. Don't get down on yourself for feeling bad. It's ok to think like sucks and it's okay to be angry and upset. (.9mm=not okay just FYI)It's a huge adjustment and no one can expect you to be able to deal with everything now. Hang in there.