I go see Dr. B., for a follow up at the wellness center. I take my Dad with me because he has been out of the loop and doesn't fully understand what lyme disease is. Dr. B. tells me all of my co-infections are negative as is my lyme test. I was expecting this, but it still disappoints me. Imagine actually wanting to hear that you have a confirmed illness! Anything is better though than wandering around in a sea of uncertainty. He explains to me that because of how the spirochete lives in the cells, it is not unusual to continue to get negative tests. His strategy is to test me weekly for the next few weeks, to see if we will get a positive test. He is also continuing to create a paper trail of my symptoms, something the doctors must do for insurance purposes. This is crazy!
My sleep cycle is completely disrupted again. I explain to Dr. B. that it feels like my body doesn't want to stay asleep. It takes me an hour or two to fall asleep and I am again waking at 4 am and just lying there. It is torture to be so exhausted, but my body won't allow me to sleep. Dr. B. says that is my nervous system keeping me awake. I have been off of doxycyline now for about 2 months. The symptoms, while not intense, are slowly creeping back in. My muscles are violently twitching, I am irritable and feel disconnected, and I can feel that burning, creeping, toxic feeling in my muscles.
I see a therapist now. She is helpful and understanding. I think what she has given me mostly is validation. Just to hear someone say to me, "yes, what you have gone through is hard," makes me feel like I have been heard and that is contributing to the healing process. Also, it has been nice to speak to someone outside of my inner circle. As much as I know everyone loves me, I feel like sometimes it must be hard to hear from me about constantly not feeling well. When someone says, "how do you feel?" I don't know what to say anymore. It's been a year since people knew something was really wrong with me, and it feels like sometimes at this point, people must think, enough already! My Mom has been a constant source of support, but she has the entire family to listen to and sometimes I just want to give her a break. The therapist has said to me, "it's hard to acknowledge sometimes that we are valuable enough for people to continue to support and love us, despite our illness or faults or whatever." So true. It's this feeling of "people will love me while I am sick to a point, and then I really should start to get better or their patience will go away and they will get tired of it." And me!
I am anxious and restless for life, but I know I still don't have the stamina to go at it like I did before I got sick. I feel like I am keeping whatever is wrong with me at bay right now, like the 4 months of antibiotics pushed it back, but it's still lurking in there. I feel like if I were to allow myself to get very stressed, and tired, I would be right where I was this time last year. I am terrified I will be curled up in bed again, in the fetal position, in so much pain I can't move. I tell my sister that I am in hell, and I can't believe this still hasn't ended. She reminds me that it is a process, and says again to remember how far I've come since last year. It is just so frustrating, because I want to go sprinting hard at life again. But lyme disease is a marathon.
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