Thursday, March 21, 2013

Remember Who You Are

Chronic illness is a weird thing. If people are aware of and understand the illness, sympathy is a given. If people are not, sympathy becomes rare. Sharing breeds awareness. Awareness leads to acceptance. Which leads to change. The atmosphere around Lyme and Cos needs to change. 

I apologize in advance for the initial rambling, but I promise it will tie together in the end. 

This week, as I said, my official blood test positive of Lyme came back and I was finally diagnosed with Bart and Babs. Off of some meds and adding several more. It took me 2 hours today to organize my week in pills into the correct baggie for the time and dose of each. I have 4 bags per day: breakfast, lunch, dinner, bedtime. I think I am somewhere around 30 pills a day, but I will be adding 4 more as soon as they arrive in the mail. 

 My disability case is approved, but I still have to bring in papers to... Honestly, I am not sure why. Every call I get finds me in a very confused and disoriented place. It is very difficult to follow directions in that state. Last week, I requested an email or letter detailing what I need. I think I have everything. My friend, Sam will be taking me to the office tomorrow.  
I was very lucky. I applied in September, so by their rule, Oct 1. My technical disability began 2 years ago. I got my approval letter a few weeks ago, but like I said, I am not sure what that means as I don't think they have decided how much help I will be awarded. No matter what, I know that meds and doctors will still be very difficult to afford.
Anxiety is a common symptom of Lyme and Friends. This means, I freak out about what being awarded means, and how I am going to budget (Yes, I am trying to do the math without the numbers. I can't help it; my brain does it without permission.). I freak out about being alone in the apartment even though we live in a secure building. I freak out about the clutter, no matter how much people tell me the place looks great. I constantly have this feeling like I am late for rehearsal. )SMs will know how bad that is.) I am constantly on the edge. Learning to let go of that which I have no control is a very difficult practice. 

Part of growing up is learning who you are. Part of having a serious infection in your brain is having behavioral impulses that contradict your self. I don't blame the bugs for my actions. I take responsibility for them. But, at the same time, my actions are infected. Learning to stop infected actions and impulses is one of the hardest things I have ever done. There is still a long way to go. Trust me, by no means, have I gotten them under control. Learning that they are a symptom makes it much easier to accept why I have the impulses, which in turn makes it easier to not stay mad for example. (Also, the extreme anger is almost always followed by fainting and having seizure-like episodes.)  It is far too easy for a chronically ill person to become lost within the fight and the symptoms. There is a fine, fine line between continuing the fight for ones life and the entire life being lost within the fight. In this case, the person begins to lose his/her identity. 


All of this is what has been happening. Of course, this is the abridged version. But hopefully once can see why with all of the legitimate concern and stress of forcing food and pills and not giving up mixed with the symptomatic anxiety that suddenly, while quite content, I completely break down and cry for an hour. Alone. (Have I mentioned that I am extremely extroverted?) 

Something else I have learned that definitely applies to me, and I wonder if other Lymies have this too:
People who knew me before I went neuro (bacteria passes the blood-brain barrier and all sorts of not so fun neurological things happen), I feel know me better. I feel like they know the me that I know. The one that gets trapped inside the painful tremoring body that hates everything  They know my drive, my heart, my passion, my artistic voice... They know me. Somehow no matter how sick I was, I was able to push through and get my work and play done. No one knew just how sick I was until I had pushed myself too far and my body gave in to the disease. I long for the days where I am only that level of sick where I can still be productive. Isn't that messed up?! But, it's the closest thing I remember to being well. 
Recently, I have been trying to cultivate relationships with people in my community and deepen current relationships. What has been weird for me is that when I speak to people from college, who knew me before my body was completely broken, I feel as though they are reaching into my heart and pulling my true self out to show me again. I sadly become so overwhelmed with trying to sleep, forcing food, choking down pills, and fighting through a bureaucratic maze to get help to survive, that I do lose myself. Life becomes the fight. 

This is not what it should be. Right now I must fight. I mustn't forget why. If I lose myself, then I will have no reason to fight. Tonight, I was so overwhelmed that I called a friend from college and left a slobbery voicemail. He called me back. We talked for an hour. He reminded me that one does not need to be strong every moment; to remain strong, purging is required and I should cry. (I spent many years not crying in front of anyone. Bad idea.) An hour later, we were laughing about the past and dreaming about the future. 

For those who are sick, call your friends. Those who are well, call your friends no matter how sick or well. 

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