Sunday, December 09, 2012

Dysautonomia 1, Jennifer 0

I didn't fill in a title right away because I am not sure where I am heading with this post.  I've always tried to have a half full perspective on things.  Anytime I feel disheartened, I always think to myself "It could be worse."  It can, but tonight those words just aren't soothing me the way they always have.  I feel discouraged in a way that I can't quite talk myself out of.

I feel defeated.  I feel like I have been trampled on without anyone even noticing me lying flattened on the ground.  My strength has been pushed to the limit both physically and emotionally.  Although I now have a name for the hell this disorder has caused me for over 17 years, it doesn't really matter.  There is no cure.  There are medicines that control your symptoms.  I live with the limitations as a constant reminder that I am sick and as hard as I try to not let it define who I am, I can only do so much.

I really hate it when people ask me how I feel because all I really want to do is scream at them and say "NO!  I am not okay.  I am not getting by.  I am not hanging in there."  I have said all these so many different times to count because this is what people want to hear.  They can't handle the truth... I can picture Jack Nicholson saying it that way too.  I don't mean this in a demeaning way but unless you live it, or live with someone that suffers, you can not possibly understand the toll it takes on your body and soul.  I'm glad, because I wouldn't wish this on my worst enemy.

Do you really want to know how I am doing?

I hate waking up in the morning (actually its more afternoon because of the insomnia).  I know I should be thankful that I woke up because I know there are people out there that have to live with the fact that a loved one didn't.

The idea of getting dressed fills me with dread.  Not only because trying to find something to fit this bloated, sick body of mine is a huge undertaking, but the effort it takes to "get dressed" leaves me feeling like I've run the Boston marathon.  Forget looking in a mirror, it has become my worst enemy.  Taking a simple shower is an ordeal.

I am so sick of doctors and medications and yet I know I should be thankful that I am in a country where I have access to them. At least for the moment anyway, until Obama gets though with hijacking the healthcare system.  You know I had to get political somewhere in here.  :)

I used to love Christmas shopping or for that matter anything with my mom.  We would share a day when we could just talk and laugh, and we would have fun no matter where we went or what we did.  I did a little Christmas shopping the other day and thank goodness that Walmart has those carts because there is no way I could have lasted 5 minutes without one.  Unfortunately, not a whole lot of stores are equipped with them.  After one store I am ready to call it a night.  I feel that loss deeply.

I think the biggest loss at the moment is my family.  We go through the motions but I can't help but feel that I am a burden.  I have always been active in my kids lives.  There wasn't an activity I would miss, whether it be soccer, awards, plays, concerts, etc.  I was PTA VP and I loved it.  Everything has changed.  I am a shell of the person I used to be.  I cannot just go out on a whim. I cannot stand for any length of time.  If I am sitting, when I go to stand, I get lightheaded.  I can't drive, or go anywhere by myself.  I never realized that grocery shopping, and errands would become a luxury, or  I would miss the fact that I could just run the boys to the mall, or a game.

  I love my husband with all my heart but I know this has taken a toll on him too. He runs himself ragged trying to be a father, a husband, caregiver, income supplier and I see how hard it is.  He would never admit it, but I can't help but think that a day comes that he will resent me for all of the things that we missed out on not only as a couple but a family.

I hate the fact people stare at me and wonder if I am pregnant or just fat.  It is humiliating and beyond frustration when I barely eat anything and yet look and feel like an elephant.  I get angry that I am on this hideous diet where I can eat chicken, rice, potatoes, and strawberries. (There are a few other things I can have but have to be gluten, high fructose, and dairy free)  I want to be able to eat birthday cake, a big cheesy slice of pizza or a PB&J sandwich.

I hate that I get out of breath from simply walking a few feet.  I hate the limitations holding me back from the simple things in life.   I think what I have the hardest thing accepting is when I see other people complaining about things that I would give my right hand to be able to do.  I feel myself getting more jaded and bitter the longer I suffer.  Deep down I know I am blessed.  I have an amazing family, a roof over my head, (although not for long, thanks again Obama) enough food to nourish my body (although it's yucky) and a personal relationship with my Lord.  I guess sometimes I just need to have a little pity party before I have to put on my big girl panties and suck it up.  Appreciate what I have and stop complaining about what I don't.  Although I must admit that is a whole lot easier said then done.  I don't know if anyone will actually read this whole thing, but if you do happen to make it down here, thank you for listening!!

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