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?