Part 11 of 13 of Anna’s Story at CanadianLymeStories.com
The day after I was unable to go to the store to get dinner, a thought came to me: ‘This is what it is to be low functioning.’ It gave me a new level of empathy for people struggling with these issues long term in their lives.
It was also a ray of recognition in the relentless gloom blanketing my mind; a revelation that did nothing to relieve my anxiety, but did help me to realize that this was part of a series of effects I had brought on by taking my medication. I could (almost!) see them as cognitive symptoms: most of which I had not even realized I was experiencing during the thick of being sick with Lyme.
Back then, when I was sick but didn’t know it, my mind just wasn’t what it used to be. I could tell that. But I could not get enough of a corner on it to figure out quite how, let alone why. Events (many of them) like having arranged and paid for a birthday party and then having another mother send invites out for the same day had had me close to tears.
When I called the other mom; a busy, capable lawyer with three children, her response had differed so strongly from mine; ‘That’s great!’ she said, ‘We’ll bus the kids from one party to the next, and the parents will love it!’ that I could tell that I wasn’t exactly operating at optimum levels. The idea that I was broken made me sad, but not proactive. Then again, it still seems far out to me to think my response was being dictated by an infection in my brain. At the time I came to the much more obvious conclusion that I was a complete loser.
The drops also brought on physical symptoms: something that maybe was or maybe wasn’t osteoarthritis in my finger, vision problems like floaters and blurred vision, pains in the bottom of my feet at one point, in just my heels at another. There was a heaviness in my chest I couldn’t name until I read it described as ‘air hunger.’ (So gross.) I had digestive discomfort. I had stiffness and sore joints.
I also felt sad. There was a lot of that; sad and agitated and exhausted and lonely and like I needed to get out and like I needed to go to sleep for 8 hours… all at the same time. More than once I changed into running clothes, sat on the edge of the bed, and woke up 3 hours later in a sticky, drooly sweat.
I keep coming back to this, but doing the cure really did help me work though an emotional aspect of the past few years. All the anxiety and non-functioning had played havoc with my self-esteem, which, like everyone else’s I’m sure, was based on my ability to function and get things done. Revisiting all these aspects of Lyme was upsetting and disgusting in many ways — but it did help me reframe the difficulty I had been having with my life as a byproduct of illness rather than just a weak personality or laziness.
I also think it is important to note here that ‘Lyme’ should, perhaps, be in quotations. It was very quickly apparent to me that the actual Lyme was only part of it.
The other infections; Bartonella, Babosia, Protozoa, were no less awful. BB1, that went after the actual Borrelia burgdorferi brought on some symptoms, which, when they started clearing, morphed into others. Co-infections and, perhaps, other opportunistic organisms taking advantage of a compromised system all need to be factored in: this was clearly, by this late date, an overall health problem.
Can you address ‘Lyme Disease’ without looking at Candida? Do you not need a liver flush or mitochondrial support? Each individual’s system has its own weaknesses and innate constitution. Each one, it seems to me, will to some extent, need different supports. This is very difficult, personalized doctoring. And it is absolutely not a situation that you can check out of as a patient, no matter how much your brain has checked out.
Perhaps this is why it is so hard, and so often dispiriting. You need to keep watch on what is working and what isn’t; and yet you need to give each thing time to work and not panic when you start to feel worse (potentially quite a bit worse) for quite a long time. And you need to do all this with (at best) half a brain. This is why it seems to me that everyone needs, desperately, to surround themselves with people and institutions that will help.
On to Part 12: Bravery
Keywords: Treatment, physical symptoms, anxiety, co-infections, cognitive symptoms, difficulty of treatment