I am bouncing back from a particularly shitty relapse. I’m feeling overwhelmed and hopeless, like I can’t manage my own life anymore. The worst part of this relapse and aftermath has been mental. If you haven’t heard from me in a while, you are not alone. I prefer to be wiggy in private. To add to all this crap, it’s been four years since I was bitten by a tick. FOUR YEARS. I’ve read anecdotal evidence that people have relapses around the same time they were bitten. If so, it makes perfect sense that I relapse now. On top of that auspicious milestone, heat causes some Lyme patients (me included) to feel much worse.

This one blindsided me. I was, I thought, on the road to real recovery. And so began valuable lesson #1 with Lyme ‘recovery’: plan to relapse at any time whether you like it or not. The hallmarks of any valuable lesson is suffering, humility, pain, and a bunch of other emotions I avoid. Denial, my old bitch of a friend (denial is female in my world), came for a nice visit until I dragged my ass to my LLMD. It seems that my bugs like my brain. It’s where they hide when I’m feeling good. He announced the return of bartonella. YUCK! Bartonella is the worst. Sore feet, sore teeth, ear pains, headaches, neck aches, muscle aches, creaky joints, muscle cramps, watery, itchy, achy eyeballs, and mental problems. I love a good euphemism, and “mental problems” is right up there with “small setback” and “not too bad”. Why is it so hard for me to admit to depression, anger, anxiety, hopelessness, lack of motivation, and obsessive compulsiveness? Everybody has some of these feeling sometimes. If anything, I should announce them like a badge of honor, because I have bugs in my brain.

Denial left the house and self-pity moved in. I wallowed around with him (of course self-pity is male!) like a pig in a mud bath for a few weeks. I cleaned. I cooked. I slept a LOT, walked the dogs and gardened very early while it was still cool. That was all I could manage. Self-pity is that friend who doesn’t like any of your other friends. After that, I had hours to fill with all those fab feelings of worthlessness, sadness and guilt. I was able to read some ‘beach read’ books, and the sheer mindless entertainment helped a little.

It wasn’t until I found Downton Abbey that self-pity had a challenge. I know, I’m late to the party. At this rate, I’ll probably start GOT in 2022, and Breaking Bad in 2024. What can I say? I was hooked. Katie will remember this as the summer her mom sat in the cool dark of her bedroom at midday, the sunlight cracking the edges of the blackout curtains, lost in the delicious machinations of the Crawley family.

My relapse was also worse because I had four months of relative clarity and sanity. Is it harder to bounce back mentally each time my brain becomes inflamed? Is it harder for anyone else in this situation? I meet so few people who suffer from episodes of an inflamed brain. Is the quality of the crazy different if it’s a chemical imbalance, rather than an illness-induced debilitation? These really aren’t the kind of questions I can ask most people. There is the possibility that I won’t ‘work through this phase’. What if I never truly get well? What if I have to live a different kind of life than I thought? What would that look like and would it be so bad?

In a sense, I’ve been given the gift of getting my priorities straight. What adjustments am I willing to make to concentrate on what matters most to me? And what matters to me the most? At the end of the day, how do I want to have spent my time? This is not an easy task. The options all have good and bad sides.  What irks me the most is the adjustment I am struggling with now: the loss of endless possibilities. The emphasis is on ‘endless’. That part of the equation is simple. I can’t do it all. I have to make the hard choices in order to stay healthy. This must be what makes Dad worry so much—he is far more aware of the implication of limited possibilities than I am.

What I must do is what I have always done, and that is to find the positives in relapsing. In that, I have boundless confidence. It’s what I do best, even with an inflamed, fragile brain (and for me, my brain is my vanity, my Achilles’ heel) and low, low self-confidence. As with all things Lyme, this will pass and I will feel better, at least for a while. If I can figure out my priorities and can handle my new levels of expectations, then everything else should be gravy, not the other way around.



I’ve had a bad week. Normally I’m loathe to admit this, but it is pertinent to this post. Today is, so far, a good day. I walked the dogs, ate breakfast, and began to clean. I like to clean. It is a zen-like activity for me, one of those empty tasks that allows the brain to unravel knotty problems or work through troubling emotions. I wanted to clean so that I could move back into my own bedroom. This month has been filled with family and friends who have stayed at the house. Because my dad is eighty-seven and my dad, I insisted that he take my bedroom this time. That is because I had a friend staying in his old room. I moved downstairs to the basement spare bedroom (which has its own bathroom and is quite cool and comfy) and stuck my brother  Mike on a cot in my office. I would have put him downstairs in the cool and comfy room, but he has a bum hip, smokes a pack a day, and drinks endless cups of coffee. My office is next to the back door and the kitchen and it’s on the main floor, so no stairs. Anyway, it was chaotic. Now we’re back to me, my dad, Katie and Cris, her lovely boyfriend who is here four or five nights a week.

While growing up, my home was calm, clean and ordered. My mom wanted it that way. We often battled—I felt her standards were ridiculous. Saturday mornings were the worst. I couldn’t leave until my room was mom-clean. She checked under the bed, in the closet and inside my dresser. I had many diversionary tactics: the paper (I read it from cover to cover by age 11), American Bandstand followed by Soul Train (I’m a Soul Train girl 100%!), and watching golf or tennis with my dad ( a lifelong tradition, as it turns out). Nothing lasts forever. At some point I dragged myself to my room and turned on some music. Once I started, it wasn’t bad. I have a deep appreciation for the crisp, fresh smell and suppleness of clean towels and sheets. I love knowing where things are. When my cousin Ginger moved in with us, I was twelve. I remember how vehemently annoyed she was that everything had to be done just so. Over time, she became a much better and more cheerful cleaner than I, and I resented her for this. Now, of course, I love to kvetch with her over the things we suffered together (ask her about cross-country skiing!).

I’m not quite sure when I realized I liked an ordered household, but I do. When Lyme drove me into my home for days on end, an almost maniacal need for cleanliness took hold. Katie would tell you I was OCD about this, and she may be right. Lyme settled in my brain and stirred up all kinds of synapses that should have been left alone. Those times could best be described as an acid trip on downers while sick with the worst hangover ever. Looking back, I’m not sure how I endured those days. Maybe the fact that my brain was inflamed and not working right made time warp, so that days flew by without complaint.

Whenever I felt well enough, I cleaned and shopped for groceries before I did anything else. If you’ve ever been sick for a long time, it’s better to be sick in a clean house. Waking up to dirt and mess is disheartening when you’re well, devastating when you’re ill. If you felt bad already, seeing all that chaos simply drags you down further. But maybe that’s just me. I don’t think so, I think my need to clean, like my need for exercise and sleep, takes precedence in my life. I value it, so I make time to do it. Things I don’t value, like sitting in front of the TV or going out drinking, I don’t do.

This isn’t saintly, nor does it make me a better person (wait…I think it might! Doesn’t the Bible say cleanliness is next to Godliness, or was that Ben Franklin? Anyway, this atheist feels pretty fucking holy about cleaning) but it does make for a nice place to wake up to, no matter how shitty I feel. This past year, much to my chagrin, I also discovered I’m a bit of a Nazi bitch about control over my house and kitchen. I wanted a roommate. I asked an old, dear friend to come and try it out. It was apparent to me that I don’t like anyone else cleaning and straightening my home. I would not do well with a maid. Well, I might. Perhaps I’ll win the lottery and find out. I wasn’t pleased to uncover such an unflattering side to myself, and I can’t truly blame Lyme for it.

Don’t expect me to apologize for my cleaning problem. Keep asking me to come over and clean your house. So far, only a few friends have enjoyed this bonus (Alex and Vilja, I’m looking at you!). To my friends and guests: it’s nothing personal, I just do it all better than you. And I like it.