As a kid you spend most of your life waiting to grow up, to be the one “in charge”, to be your own boss. I mean, sure, there are still rules as an adult that you have to follow. But for the most part you get to call the shots on things like bedtime and what you eat for dinner. Who you spend your time with and how you entertain yourself when you’re not working. As a kid you get what you’re given, and you have little to no control over what that is. The beauty of being an adult is that you get to decide.

As an adult I have always had a thing about being “in charge” of myself. I worked where I wanted to work, I paid my bills on a schedule that worked for me (and the creditors obviously). I made decisions about spending based on what I felt was comfortable to me and I decided who I would spend my free time with, and where and how I would spend it. I have never been a huge fan of waiting for others to take care of me, in any sense. Unfortunately, every thing about chronic pain requires me to depend on someone else to be responsible for some aspect of my life and it is making me crazy.

In the medical aspects of my life I am completely dependent on my doctors to make decisions that will benefit me more than they will harm me. I can ask questions, request treatments or medications, do research and see different professionals but ultimately, I am at the mercy of their decisions. At least, until I find a way to perform surgery on myself.

When I left my job in September 2013 I knew that things would be different in my life, but I had no idea it would be this hard for me. While I do love the freedom to take care of myself as I need to, the lack of control over most aspects of my life is almost suffocating. The biggest issue for me is not having my own money. This is truly my own personal form of hell. I knew that I would have to be out of work before I could start the disability process, however, the idea of waiting for someone else to decide if I am indeed, in as much pain as I say I am is insanely frustrating. It’s another piece that I just simply don’t have control over. My financial situation depends on another person’s decisions.

Things around the house are different too. Because my body doesn’t play nice and there are things I just cannot do anymore I have to depend on my family to do them for me. Things like vacuuming or taking out the trash. Simple things like cleaning up after themselves so I don’t have to do it later. It’s so frustrating to know that the house has not been vacuumed in over a week and be forced to keep asking someone to do (and watch it not get done) or do it myself and pay for it for days afterwards.

Looking towards myself, I depend on my own body to allow me to do the things I want to do. I depend on my pain to stay low so that I can get my errands taken care of, or so that I can go to a movie with a friend. I am free to make whatever decision I want to but the reality is that if my pain says “no”, I’m not going anywhere.

Being able to take care of yourself, in any sense of the phrase, is the biggest aspect of being an adult. It’s how society deems you successful and mature in life, and this illness has managed to take away so much of that from me. I know that it won’t always be this intense, and that there will be times when I am able to make more decisions for myself, on my terms. But right now I am just really tired of saying things like “Yes, I can do that. Depending…..”

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