Leanna's Winding Path

9 August 2011 – I Hate My Life.

This is not meant to be negative, just honest.

No apologies.  So strange to hear that statement from Miss Pollyanna, always so upbeat without a single negative thing to say.  It’s something you’ve been waiting for me to say.  Please don’t ask how I’m feeling.  I’ll only lie and say fine or well, which is true when taking life from second to second, but not an honest overall assessment.   I can’t keep up the front.  It’s true.  I’m living as a functional invalid, and I hate it.  I can’t walk.  I have to have constant supervision to make sure I don’t fall.  I get envious of seeing everyone around jumping out of their chairs, riding their bikes, and going for their runs.  My legs can barely even pick my body up. 

And I’m a difficult case.  No one can tell me what is wrong or when or how it might get better.  They all say that everything is great.  But it’s not.  My CT scan shows that the shunt is working perfect.  There is some dead tissue in the cerebellar region, which may be causing balance issues, but no one really knows.  Nurses and doctors say, “I’m so happy for you – that the shunt worked”

I was receiving in patient therapy, which was very good.  It was 3 or 4 hours a day, very intensive, and I was making great progress.  I don’t know what happened.  As soon as I got home, I couldn’t walk anymore.  How could I get so much worse so quickly?  No one knows.

So I wait and hope for relief.  Herb hates it too.  He’s my primary caregiver.  No matter what, it’s challenging for him.  He has some relief, bike riding which helps to keep him sane.  He really is awesome, but our regular interactions are arguing, because he needed me to admit how much this sucks.  He doesn’t get a break rom his caretaking duties except when we have a visitor.  With no relief, the best that can be done is to stage me in some part of the house, and try to place the proper props in my arm range.  Like now, I have my computer, phone, calendar, milk, cookies, and laundry.  He also manages most of my calls.  He get’s tired of dealing with it all.  It does freaking suck.  I’m surprised it needs to be confessed. 

Please don’t be confused.  I do not hate myself.  I love myself.  I love Herb.  I still believe in myself and know that I am on my way to healing.  I am not hopeless.  I am confident I will be well.  It just bites now.  Hopefully the in-home health care will help.  Hopefully this is temporary.  I’m strong willed at least.  I certainly live on the positive side of life too; but there is this sad reality that is there when I think about it.  It is impossible to make plans unless you are visiting me.  I am very lucky to have so many visitors.  Lot’s of people have asked how they can help; well here is how.  This challenging disease doesn’t just affect me.  I know you love me.  That is evident by all the visits, well wishes, and cards.  Visit Herb too.  Call him to talk to him, forget about me.  He needs to talk.  He needs relief.  I can stay in my propped position for an extra hour.  Just get him out of here and let him focus on something else.  He needs it as much as I do.  Bring food.  Help with projects when you visit.  Be a distraction from it all.  We love to laugh.

It almost makes me sick to post this.  It’s truth.  Makes me feel like I’m giving in.  I’m not.  I’m not always in this state either.  It happens.  How could one expect anything different from the current situation?  Tears are frequent.  But I’m not giving up.  Trust things will get better.

Leanna