But I'm at a loss as to what I should actually post. I'm so frustrated right now, and I know that is a common theme in many of my blog posts, if not almost all of them. However, I want people to know I'm not a generally "negative" person. I tend to look toward the more optimistic outlook in life, but this disease has changed many things about me.
What I mean to say is, it seems my disease process is progressing. That leaves a ton of unknowns. Ever since last Tuesday, I have been very anxious about many things. Namely, the next time I have an energy crisis or a seizure, will I be permanently unable to speak or move? Will I be able to resume caring for myself at my "normal baseline"? Worrying constantly about these questions isn't going to do a thing, and I know that. But I am faced with the realities of living with Mito every day. I can't forget about it, no matter how hard I try. I can't run anymore, doing the simplest of tasks takes a lot of energy out of me and a lot more time than they would other people my age. And yes, I know by comparing myself to others my age, I am giving myself a very unfair disadvantage. I get that. I'm my own worst advocate at times. But here's the thing: I'm the ONLY person (at this point) that can truly advocate most effectively for myself! Relying on other people to do this for me is not fair to me. Most people that I have relied on to advocate for me have let me down. I can not trust them. But that leaves more unanswered questions.
The reality is, the next energy crash or seizure I have could result in my being dependent on others for all areas of my care. In the event that this would occur, I would need to have many specific things in place for myself. I want to be able to get people to understand the means by which I communicate when I am unable to speak. Namely, eye blinking. It's fairly simple, actually. One blink means "yes", two blinks means "no". But other words and phrases that can not be communicated using only blinking. In addition, having others care for me could be very difficult for me personally, because I am used to caring for myself. Other people will not know the way I prefer to have my hair fixed, the easiest way to keep me the most comfortable, what medications I take when, and many other things. Thinking of all of these things is very difficult emotionally for me. It takes a huge toll on me, because I know that most 20 year olds don't have this on their minds. And they shouldn't. But this is the reality that I have to live with. No matter what, this is the body I was given, and I can't get away from having Mitochondrial disease, no matter how much I may want to.
I realize that in the long run, all of this will make me a stronger person. At least, that's what I hope for. I can't imagine having to go through all of this for nothing. But I know that I'm not. God is not the reason for my suffering, but He will surely help sustain me through it. After receiving the sacrament of anointing for the sick on Saturday, I feel relieved that my sins are forgiven and also a sense that the parish is praying for me in the midst of this very difficult illness.
But I have SO much to take care of.
I have to double check on my appointment with Dr. M and make sure that it is scheduled, then talk to my friend to see if she can go with me to the appointment. I have to talk to my primary care doctor's office about a) getting an appointment with him, b) changing my pain medication from a more acidic medication to something like Tramadol which will help with nerve pain and other kinds of pain, c) getting a copy of my own medical records to put together a medical binder to keep all of my information in. Yes, essentially I have a LOT to do. It's very overwhelming.
And I still have three more days to work before I have a day off. Ugh. Oh well.
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