SO...I'm going to start a disclaimer here and now. The contents of this post may annoy/anger or offend you. It was not, nor will it ever be meant for that. However, I will say that if you are easily offended, don't read this post. Disclaimer over.
OK, so around the time I turned 10 or 12 years old, I started feeling absolutely terrible. Not just "I don't feel good I think I have the flu" kind of terrible. I had absolutely no energy, I had headaches all of the time, I slept more than I was awake, my stomach started to have all kinds of problems, and I just did not feel like myself. Anyone I talked to basically told me I was "depressed" and that "there was help available for me." To be fair, I do have some psychological issues. I've always been a very sensitive person with a very tender heart. Up until recently I always tried to give people the benefit of the doubt and be as trusting as humanly possible. But something never really felt right. Over time, this progressed to the point where I lost a lot of weight, continued to spend a lot of time in bed, and my grades began to suffer. I had always been a good student and it was nearly impossible for me to complete any of my required work at school. But again, my issues were said to be anxiety and depression related.
It wasn't until I was 18 that I realized my issues were more severe than I first thought. That was when I had my first seizure. I have outlined my story in the About Me page, so I will stop here. But now we are fast forwarding to where I am now. And where I am now is close to the most distressed, distraught and hopeless I have ever felt. I am being forced to look at whether or not I can go back to my job, whether or not I can continue practicing as a nurse, if I can work at any other job or if I am forced to realize the reality that I know at some point will come, that I officially can not work. My hope and prayer is that I am not at this point yet. I am not, in any way ready for that. However, I will be forced to deal with the reality if it presents itself. My hope is that I will be able to stabilize my dysautonomia and that will help me get some sort of idea as to what my baseline is and at what points I can function. This process will likely not be a short one, and meanwhile I am close to being a basket case. I am so frustrated, scared, and unsure of what is next.
It makes me so upset sometimes to see where I am and realize just how long it has taken for me to get here. Twelve years is far too long to go without a diagnosis and some relief. It's really a big step but it doesn't actually feel like much of a step. This just is not acceptable to me, but I have been forced to live with this reality. Society does not understand my disease, nor does the medical community. While I still do not have an official diagnosis, I also know in my heart that a Mitochondrial disease is the answer. This is not a reality I am realizing lightly, it brings me great sadness and makes me feel absolutely powerless at times. It has made me realize that I am not in control of my body, as much as I wish I were.
I am so sick and tired of hearing "but you don't look sick." or "You're too young to deal with that." or "Have you tried prayer?" "Have you tried coconut oil? gluten free diet? lactose free diet?" On the prayer thing "Did you really give God the power to heal you?" None of these comments are necessarily maliciously intended. However, they can be incredibly difficult to hear. Sometimes I really get frustrated and want to ask what I need to do in order to make my illness easier to handle for the general public. Then I think "Are you flipping kidding me?!" I'm the one with the disease and I'm trying to make it easier for people so that they are more comfortable with it. What a croc! I've always been one to think more of others than myself. Only lately have I realized that I need to do what I can to help myself and think slightly less of others. The fact that I'm a caregiver and tend to put others first will always be true. It's a part of me that will probably never die. Which, honestly is how it should be. I don't want Mito to change everything about me.
Here's the thing. I'm angry. I'm so freaking angry right now I can barely see straight. My anger is not necessarily directed at God. I'm angry with Mito. With my body. My body never does any of what I want it to most of the time. I feel so incredibly out of control of my body and it is absolutely heart wrenching. I can only solve this problem on my knees, asking God for direction and peace in all of this. It's the only way I can make any sense out of this. And even then I realize it will still be difficult.
I need love and understanding more than anything right now.
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