Monday, January 13, 2014

As Good As It Gets...

I'm angry, and then because I'm angry...I'm more angry. Why? Because anger is an emotion that gets me nowhere. If it motivated me to make a change that would be one thing but all it does is make me tired and sad. So, I guess what I really am is tired and sad. At least anger fires people up and unites them in a common bond, tired and sad just makes people think you feel sorry for yourself and that you just need a kick in the ass to get yourself straight.

I'm sick and no matter how much I do the right things, I don't get better. No matter how many doctor appointments I attend, toxic meds I pump into my veins, books I read about my illness, surgeries I have to scrape the illness out of my joints, I will be sick...no matter how hard I try to change that.

No matter how much I know, how many people I educate, how many PSA materials I create, pins I pin, Facebook status updates I make, or blogs I write, I will continue to get emails from friends and family telling me how ill they are with the same disease I have.

No matter how many doctors I educate, explain, cajole, harass, reach, they will still possess misinformation about my illness. They will still offend me by not understanding, insult me with their careless remarks as if just because I have dealt with this disease for so long I cease to be a person with feelings, who might hurt because I am ill. They will still insist if I just tried that one elusive med out there we could solve all of my problems. If I just cooperated better, was more compliant, if I just stopped letting my body refuse to accept these drugs and let them work.

No matter how much I explain to my family or friends they will still misunderstand, still leave me out, still think I'm making a mountain out of a molehill, that I'm selfish because we always need to accommodate my disease. They will still hurt my feelings as if they don't exist anymore because we stopped talking about how I feel about my illness years ago to make it more comfortable for them to be around me. They will still think that getting better is around the corner and if I just cheered up a little I could help myself into that remission. They will still give me their opinions, unasked for. How I could just feel better if I did this or why aren't I doing that, I must not really want to feel better.

What I can't seem to make anyone understand is that I don't chose this life. I don't chose to be sick, take toxic meds that make me more ill, let people cut me open and screw my insides back together. I don't chose to wonder which surgery will be the one that makes my husband finally so tired of being with me that he leaves, understandably. I don't chose to mother my child this way. I don't chose to be a difficult to treat patient. This is not my choice, I get no choice, I just get dragged around in a body that doesn't work, doesn't cooperate, won't play fairly.

I'm tired, not kill myself tired, that's what most people don't understand, I don't want to be dead, I want to live and be healthy, normal, like most people are. I want to have a life that doesn't require me to be a genius about my disease, constantly plan ahead for it and most of all worry if I'm going to get to live it. I want my life back, the one that I used to enjoy, where I didn't disappoint everyone, where I was actually a lot of fun to be around.

Is this it? Is this as good as it gets?

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