I know I am not updating this blog very consistently. I keep trying to write, but am having some brain problems. Most of my energy is in strengthening my body to prep for the IV antibiotics. And eating. Eating takes an unnatural amount of time an energy and causes pain.
If you have just stumbled on to this blog or have been following for a while, know that my original purpose for writing is to share the trials and tribulations of someone dealing with chronic neuro-Lyme and co-infections. I have a hard time sharing. Not because I don't want to, but because my life is so complicated and painful that I fear sharing even the most simple facts seem like this is the place I come to complain.
That has never been my intent. I want to chronicle my experience. The medical, social, emotional, financial and other aspects of my life aren't unique to me. Many other Lyme patients have similar stories. My goal is to document as I go. I have such terrible memory sometimes so this also serves as my little reminder. I know there are too many people who write Lyme off as psychosomatic and its suffers as crazy or just depressed.
It is isolation that causes me the most pain. I am so used to the physical pain, that most days, I just swallow it. However, some I lose my mind. I collapse regularly on my floor screaming, tears flooding from my eyes. Sometimes, with luck, I make to my couch or bed. With 3 to 4 doctor appointments a week, it seems like I can never rest. I know that sounds like nothing compared to a full time job. But I have worked full time. This is 24 hours of hard work. Even sleeping is hard. If I don't do everything just right, I can't stay on top of who I need to call for which medical problem or schedule the appointments or figure out how to get there. All of this is exhausting and causes physical pain. But when combined with the isolation it is nearly unbearable.
Nearly everyday I want to quit. I want to quit the meds and the phone calls and the appointments and the tasteless food. I want to quit. I want to quit with the hope that the rhetoric about just get a job and you'll be better or some equal falsehood, might come true. I will not heal if I quit. The only way out is through. That is the toughest of all my pills to swallow. Hint: not believing in something or likewise believing in something so strongly does not make it true.
My blood tests were positive. Lyme rarely tests positive even when it is Lyme. I will not stop. I will not just give it up because you don't believe in evidence. Even if my fight is a minute to minute ordeal, even though right this moment I want to quit, it's not actually something I am capable of doing. Do I will complain to myself, distract myself with Hulu and choke down my dinner pills. To be followed in two hours by the bedtime ones. Hopefully, I will sleep alright so I have the energy to fight tomorrow. I started today on Empty.