I attended a Lyme Disease conference yesterday and have been feeling emotional ever since. I woke up from a dream this morning filled with a feeling of humiliation and horror. You see Lyme is in my brain and though it is greatly improved I do still struggle a bit with written language. In my dream I had written a press release for work and submitted it to the newspaper and they printed it “as is” full of garbled typos. My Lyme brain in black and white on display to the world. Uggh!
The rest of this post is about the deep sadness I am feeling about the degree of suffering I saw yesterday mixed with gratitude about being in a room full of people who really understand. I am okay if you want to jump off this post here since I am writing it more for me than for you but before you do so, please know this. Everyone who goes outside is at risk for this disease. The only way to protect yourself is to know MORE than your average doctor about what to do if you get bit by an infected tick. If you haven’t read my prevention post, please check it out here or I highly recommend this one from my doctor.
I have been in tears off and on since last night thinking about all the suffering, determination and hope that I experienced yesterday jammed into one room. It breaks my heart to see the people walking with canes, or struggling slowly in obvious pain, the tired faces, the lovely young woman with her hands curled into claws and the stories of children who’s childhood has been disrupted. I connected with acquaintances I have met in other contexts who it turns out have Lyme too. We shared hugs with the words “I’m sorry you have Lyme, too.” It was good to connect with others like me who are mostly functioning well and trying to make it through days of crazy medication regimens, spending hours preparing healthy food and trying to find the balance between work and rest, family obligations and activities that support healing.
I am grateful for a new framework of hope, working toward recovery rather than the elusive cure which basically means living in peace with the Borrelia bugs in my system.
As far as my treatment goes, I am not done. I started a two week “medication holiday”/detox on Friday. It appears that my gut has been revolting against the antibiotics and my liver is ready for a break. I am really tired today and along with the ever-present tinnitus, my knees are aching and the nerves in my toes/feet are burning, but – my gut is way happier than it has been in a couple weeks. I thought I was past this level of symptoms but apparently am not. I am hoping to bounce back some as I get further into the detox. In the meantime, nap time is calling my name!