priorities

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.

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toil

It has been almost six weeks since I began to seriously participate in my own life again. This sounds rather pathetic, but after three years of unrelenting illness, this is a major accomplishment. The problem is, what is my life? There is nothing, outside of staying in Denver, Katie, and my Dad, that is the same. Let me backtrack to when I would define my life as being on an even keel, way back in early 2011. That was the year my mom died, and the year my ex quit his job. I started graduate school in January of 2013, five weeks after we decided to divorce. Since 2011, I have hit every major life stressor (death of a loved one, loss of income/job, divorce, move, school, and major illness) except for pregnancy and marriage. Wow. It looks pretty grim when I list it all. I’m tough. I know that, I’ve always known that. I’m resilient, something I didn’t know until recently. I mean, I knew I didn’t react to calamity like other people, but I didn’t define that as resilience. I defined that as life.

We all have our limits, though, and when I started trying to do what I once considered normal activities, I got depressed and anxious. I felt hopeless for more than a few hours at a time, a rarity so foreign to me that I didn’t recognize what it was. Who was I trying to kid? I couldn’t do life anymore. I was so out of practice that keeping things together felt impossible. In some ways, being sick was easier. I was stuck. There was no way I would go back to being sick if I could help it. I didn’t know what I was moving towards, but I had to move forward anyway. This is the classic definition of cognitive dissonance. I was being flung outside my comfort zone (whatever that was) to an unknown future. I had four choices: Ignore and deny (of course I’d like this one!), dwell in being nearly well and redefine well (yuck!), accept where I was and make small, real changes (hmmm…), or act like I was well and jump in (okay, but…). I didn’t like any of the choices, really. I wanted everything to fall into place magically, without the awful, churning middle phase. I figured I would make small goals and keep at it, and something would happen.

Nothing much has happened. I’ve had false starts and setbacks. I’ve redefined the goals. One thing I didn’t do was stop. Gradually, (well, maybe not gradually, I didn’t have this epiphany until today) a daily satisfaction set in. The beginnings of schedules and structure appeared, by simply doing it over and over. I found I was working eight or nine hours a day, doing all sorts of different things. Applying for jobs, writing cover letters, researching companies, working part-time as a lifeguard, working part-time from home, cleaning, cooking, reading submissions for a literary review, writing my blog, fixing my website, learning technical writing, and refreshing copy editing skills. Whew! I have become busy! Some days I have to accept that I can’t return fully yet, and I can’t beat myself up for that. Other days I can charge ahead and do everything on my list, and then some.

I haven’t gotten my dream job. I haven’t finished my book. My website still has bugs that I haven’t figured out. I’m only a quarter-way through the copy editing book. I’m half-way through the technical writing book. What I have gained is the intangible. The satisfaction of a day well-spent. My brain is slowly returning to normal, much more slowly than I’d like. The challenges are immense: am I able to retain what I’m learning? Am I making mistakes that I can’t see? There are still cognitive gaps that aren’t apparent until I’m confronted with them. For instance, a friend asked if I’d read Willa Cather’s My Antonia. Of course I had, I’d read the prairie trilogy years ago, then reread My Antonia again. I’d written about the book in grad school, for Pete’s sake!

I couldn’t remember a thing about the book, except that I’d read it. Another time, I went to a play with a new friend. They were playing 80s music before the play. I couldn’t remember lyrics I used to know by heart. The whole cognitive deficit part sucks, but the stimulation of learning new things has been restorative. We’ll see how successful I am at retaining what I’ve learned. I hate my sorry-ass brain at the moment.

I don’t like this phase. I don’t like being in limbo in virtually every aspect of my life. Oh, I know. It will make me a better person. It’s another fucking opportunity for growth. I’ll get there. Blah, blah, blah. I don’t think about those things. I can’t. The unknowns are too big. Maybe the way out of an existential crisis is simply doing things and moving forward every day. My mind, to paraphrase Camus, must stop watching itself and start acting.

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body

I like my body. I’ve never quite trusted it, because it was broken when I was seven. I fell out of a tree and fractured my skull. I was in a coma for about a week. It’s funny what you remember about hospital stays, especially when you’re young. I definitely remember the nurses coming in and taking my temperature (they did it anally back then, HELLO!). I I remember the doctor’s name: Dr. Fountain. I remember him sitting by my bed with his watch, asking if I heard the ticking. I don’t remember that my answer fazed me one way or another. At seven, one accepts change easily. I remember my Nanny gave me a Snoopy stuffed animal with a built in radio. We listened to a baseball game together in my hospital room. I went home to a new house, because I managed to fall on a Sunday afternoon at my dad’s new bosses’ house during a relocation.

The whole year after my fall is a large chalkboard with four or five sentences, the rest erased completely. My brothers found a live bat in the yard. My dad held its quivering body in a towel wrinkled by its tiny claws. I had daily headaches and dizzy spells. I practiced on our new grand piano in the new living room. The house was a modern, open ranch with tile floors. I loved to bang out loud, lively pieces. The notes hung in the air and crashed throughout the house. That was power.

The next insult to my body was deeply personal, another kind of power wielded by my brother without my consent. I have never and will never forgive him.

I had a partially detached retina when I was 17. The surgery was routine. However, my horrified parents got to listen to me hit on the poor orderly while I was high on some magical pre-surgery drug. Afterwards, I was rolled into a storage room with a rubber glove filled with ice over my eye. I must have been considered a low risk patient. After that I had many minor and major surgeries, all having to do with my faulty lady parts. That’s all I need to say about that. All told, I’ve had eleven surgeries; four major and seven minor. Great preparation for Lyme.

My mother was a functioning anorexic for most of my life. At the end, she became a non-functioning anorexic, and it killed her. She was 59 lbs when she died. One of the gifts she gave me was a healthy body image. Whether she did it on purpose or not, I am grateful. She taught me that my brains and personality would last far longer than sex appeal. She taught me that a strong, healthy body was the most important thing. These lessons didn’t sink in as easily as I make them sound. I went through a dork phase that was epic (pixie cut, blue granny glasses and braces for buck teeth). I fretted over my looks like most young women. To this day I think my head looks like a potato in pictures. My boobs weren’t big enough. My legs were too skinny. I rarely dieted, however, and always exercised. I abused my body with drugs and alcohol and had lots of sex. But I never quite trusted that I was indestructible.

By the time Lyme hit, I had lots of experience in dealing with physical setbacks, or, let’s be honest, the problems that can happen if you’re female. Endometriosis, ovarian cysts and scar tissue wreaked havoc inside of me for years. It was a relief to have everything taken out. I developed an allergy to morphine and food sensitivities. Lyme was no walk in the park, far from it, but I had experience. I am tough as nails at enduring. I consider my body ‘temporarily offline’ right now, as it has done off and on throughout my life. I’m babying it along, taking special care with diet and rest.

On my worst days, I hate my body, both in appearance (I’m starting to bear a startling resemblance to Mr. Peanut) and performance (another day of aches and fatigue). I tried positive imagery, imagining the billions of little spirochetes, bacteria(s?), and protozoans dying and being swept out of my body. What I usually got was gross negative imagery, of squiggly microscopic creatures burrowing in my brain and eyeballs, teeth and joints, heart and liver. This was a new kind of battle for my body, unlike any other I had endured. I’m almost well now, and my body is the last to know it. I tell my body every day that I am better, I should feel better. So far, the body does what it wants. I still like it though, it’s the only one I’ve got.

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stamina

I have lost my stamina. I’ve become the person others look at to feel better. You know, the “my life sucks, but it could be worse, I could be as sick as Melissa” line. I know, because I’ve done that. Haven’t we all? One of my guilty pleasures used to be “Toddlers and Tiaras”. Yes. It’s horrifying. But I had the satisfaction of knowing I wasn’t one of those  moms. It’s disconcerting to be on the minus side of the equation. You walk this line of wanting to appear strong and in control, but also being honest about being ill. It is shocking how much energy Lyme uses up. At the height of my illness, November through March of last year, there were days when stepping into the shower required a pep talk. There were times when Katie had to drive me everywhere, carry my purse and all the shopping bags, and sometimes handle the transaction (I’ll write about how I lost my mind…I’m simply not ready for that yet). I will be forever grateful to her for how she stepped up. I’m just now realizing how hard it must have been on her, seeing me wander through the house, dark circles under my eyes, a shadow of her once indefatigable mother.

On one of my doctor visits this June, we discussed what I could and couldn’t do, because I was starting to feel better. As in all things Lyme, it depended. It depended on how I felt that day, what meds I was currently on, how my liver was functioning, how hot is was (Lyme patients are notoriously sensitive to heat), etcetera, etcetera, etcetera. I was given a few guidelines. I could swim, but start with 300 yards and no more than 500. I could play pickleball, but be careful. I could go back to work, but not full-time. He cautioned me several times about doing too much. Of course, I ignored some of the advice. What did he know? I had stamina! HAHAHAHA! Lyme likes to fuck with you, and the joke is always on you.

By mid-July I was in full relapse mode. It was as bad as it had ever been. Damn, I was pissed! And humbled. If you’re not humbled by Lyme, you have an ego of Trumpian proportions. There is something powerful about hitting bottom. If you’ve never been there, I’m not suggesting a ride down, but if you’ve found yourself there you know what I mean. I wallowed down there a while and reached the strange nexus of choosing to rise and also not giving a damn. You get stripped down to what matters in your life. The problem for me is as I rise back up, I start to give a damn once again and I second guess myself. Worse, I let myself hope without any expectation or guarantee that what I want will happen. This messes with my head. I’m not the same person I was before Lyme. I had stamina. The definition of stamina is “the ability to sustain prolonged physical or mental effort.” Well, I could sustain the prolonged physical effort of surviving at the bottom for a long fucking time.

But what if there is no bottom, just a boulder to push up an endless hill? Don’t we all feel like life is a Sisyphean punishment sometimes? I hit a point where I could see, for the first time, the possibility that ending your life could be preferable to suffering. This is quite different than contemplating suicide. It’s the acknowledgement that everyone has a point where the suffering is too much to bear. At what moment did I choose to crawl upward, Lyme be damned? At what point of suffering would I give up? I would never put myself in a position to get Lyme again (although I’m sure I could bear it—we can all stand much more than we think).

Stamina has a cost. I am weaker that I was. I have to plan for the possibility that Lyme may have altered my life irrevocably. I have no idea what the future looks like. I hope there’s love and happiness and meaning and purpose. I need stamina to create this reality with what is left after Lyme. And I want to get back that “I don’t give a damn” attitude, because I was fearless. I haven’t lost all of it, but doubt creeps in. I’m not a shadow of my former self.  I’m morphing into a better self. It is as hard as being sick. Sometimes it’s harder, because I was already pretty great. HA! There’s that I don’t give a damn attitude. I’m going to need that. And stamina.

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relentless optimist

It’s high time I started writing about my life and Lyme disease. There’s more to life than Lyme, and there’s more to Lyme than most people know. My experiences are depressingly familiar to anyone who has been misdiagnosed, and then diagnosed with Lyme disease. I’ve lost nearly a year to Lyme, a long slog in which there were no guarantees that I would ever be well, or that the medicines would stop making me so sick.

Before I go further, I suppose I must define how sick I was. The clearest measure has been what close friends and family have told me now that I’m almost back to normal. “It was bad, really bad” was a phrase I heard over and over, from my dad, my daughter, my close friends in Denver, and a two close friends from Minneapolis and New York who saw me during this time. I don’t have a handle on this, I was too sick to notice how the hours, days, weeks and months slipped by. I do know that I marked my days by the most minimum of measures: medicine, food, pets, and more medicine. A good day meant getting up, making the bed, and doing the mundane chores that make up a life: grocery shopping, cleaning the house, doing laundry. It was as if by doing those basic things I wasn’t as ill as feared. But I was.

Now I smile when I wake up. I don’t lay there assessing how I feel. I get up, get my coffee and face the day. I still take medicine, and I still have bad spells. That’s okay, what’s harder is re-entering my own life. It’s like I’m rusty at living. Interacting with bureaucracies, handling schedules and work and play, they all seem more difficult than they should be. What comes easy is waves of joy. Joy that I have emerged, mostly intact. Joy that I have people who care about me in my life. Joy that I can drive myself wherever I want to go. It is the simple things. Sometimes the simplest things are unappreciated until you can’t do them.

A friend of mine, a curmudgeon of the first order, once called me the ‘most relentlessly optimistic person he’d ever met’. I chose to take this as a compliment. Things this blog is NOT about  include the science of Lyme, a catalog list of my symptoms, and whining. There are several fabulous sites about Lyme, http://ilads.org/ is one, https://www.lymedisease.org/ is another. I am interested in how having a chronic, serious disease has changed me, for better or worse. Often, when I was having a bad day, I imagined myself on a self-imposed pilgrimage, where my only job was to contemplate my past, present and future. This is how it turned out.

 

 

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