Friday, January 2, 2009

What goes up...

Every time I start to get optimistic and write something like "I think I'm finally making some headway against the neurological symptoms of this disease" or "Neurontin (generic name: gabapentin) has so far been a big hit," reality steps in and hits me in the face with a frying pan. And instead of little stars and twittering birds dancing around my head like in a cartoon, I get laughing spirochetes. They mock me. Jerks.

The last couple of months seem to have followed the same pattern. I'll feel like crap, suffer through a die-off reaction, then slowly start to feel a teensy bit better. Then I'll have four or five days where I begin to think "Gee, maybe I'm getting better!"

At first I'm nervous because I don't want to over-extend myself (a major flaw of mine), so I'm really cautious. Then after three days, maybe four, I think it's going to stick, so I make plans about what I'm going to do. I'll start a project. I'll get excited.

And then--BOOM--just when I think things are looking up, I come crashing back down.

I was feeling (relatively speaking) pretty good from December 20 - 25. I signed up for classes at the Tai Chi and Qi Gong studio nearby. I almost finished reading a book. I went on a long walk through the snow. I had coherent conversations!

And then I declined. On Monday (December 29), things started to get pretty rough. By today, I just couldn't get out of bed. I tried. Failed. I eventually rolled out onto the floor and crawled my way over to a chair that I used to pull myself up to standing.

I'm taking a sick day.

It's been difficult emotionally. The brain fog has returned, along with the word-finding difficulty. Yesterday I found myself standing in the aisle at Whole Foods, cart full of groceries, wondering what I was doing. What was I supposed to do next? I had a piece of paper with all of the items crossed off. So what now? What do I do?

I guess "What now?" is the ever-present question in chronic illness. All of my excitement and my plans have been put on hold...again. From yoga to reading to cleaning up my snow-and-ice-damaged garden, it's all on hold. Indefinitely.

I am not good with the indefinite. I like time lines and lists and organization and plans and expectations. Without these things I feel lost. Honestly, it terrifies me. My entire life has been a quest to find order in chaos, to establish that I have power and control in my own existence.

At the heart of my Lyme struggle--physically, mentally, emotionally, spiritually--is a search for balance. To find peace between order and chaos. Perhaps wellness lies between illness and health. Perhaps wellness is balance.

Addendum: I just read over my post and something hit me. What are my plans for this evening? Why, I'm attending an anyi despacho ceremony, lead by Rose De Dan, the woman I see for shamanic healing. And what is an anyi despacho ceremony? Rose writes:
A despacho is an ancient ceremony that melds the assembling of consensual reality (the world we all agree exists here and now) with offerings and prayers to the Spirit World for the creation of ayni (balance and harmony) in our lives, healing and release of energies that are standing in our way of fully stepping into who we are becoming--our limitless possibilities.

Hmmm...fitting, no?


  1. I'm guessing that you probably don't like to sleep on your back, right?

  2. I tend to sleep on both sides, as well as my back. Why do you ask?

  3. Oh, Anna. I wish I could make it all go away....