My life is chaos. Extremely organized, disciplined chaos. Everything about my life is planned out yet I have no control over what happens. It is all scheduled--every hour of every day. I recently came to a startling realization, and am trying to come to terms with it. With disease, so much of my being is changed by it, and it's hard to separate myself from my RA. I am not my disease, I just have to live with it. But how am I supposed to remember who I was before my disease? How am I supposed to remind other people that there is more to me than a diagnosis? How do I do these things when every aspect of my life is controlled by my disease?
It's easy to say that the pain associated with RA is controlling, but when I really look at it I can see the extent to which it does. Even tiny seemingly insignificant aspects of my daily life are dictated by something I have little ability to change. When I get dressed in the morning, the pain level in my hands will determine what I wear. When the day comes to a close, my disease forces me to sleep or else fatigue will consume my body. Inflammation makes me think long and hard about every piece of food I put into my body knowing that I may regret it later. The nodules in my feet will determine the shoes I can put on (and we know heels are out of the question). My energy levels will decide how much activity I can do in a day, or during a week. Side affects from medicines mean that I can't enjoy the sunshine the way I used to without quickly burning as I did today. But it is so hard to follow the needs of my body when I see everyone else around me living with the luxury of ignoring the needs I am facing every moment.
Don't get me wrong, I am lucky. I am fortunate that I can still do what I am doing. I can go to school, I can take care of myself, for the most part I am physically able. But all my little victories like eating healthier, or having a regular sleeping schedule are much less sweet when I know I don't have a choice. I don't choose to go to bed at 9:30pm most nights, I need to. I don't choose to wear my tennis shoes to class, I have to. I don't choose to avoid chocolate, my body requires it. Admittedly I don't always do what my body wants me to, but if I want things to go more smoothly it is necessary.
How am I supposed to find myself in this? Where does the disease end and I begin? I feel like I am not holding the reigns of my life, like I am stuck in a whirlwind of chaos. I am completely scheduled--every blood draw, infusion, refill and medicine. I have reminders to set up needed appointments, contacts between insurance and care providers, and alarms to take this pill or that. I have everything taken care of, and nothing to show for it.
No amount of planning can prepare me for life autoimmune, as I am at the mercy of my disease; completely and utterly powerless.
