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!!