With so many things I can do with my time, I have quite honestly never been bored. Even in waiting rooms, hospitals, airports. I’ve always been an active person, so when I got sick or better yet, progressively became very sick, activities began dropping off to the point that my main activity now is work.
These past few years I’ve spent much of my time not at work in bed. Still, I could never say I have been bored. In pain, nauseated, yes. When first diagnosed, I really struggled to read anything more than a few sentences due to the severe brain fog and lack of concentration (many are diagnosed with ADD before Lyme disease).
I occupied ( occupy!) myself with reading a lot of blogs and news stories. I’ve listened to music. I’ve watched mucho Netflix. I’ve used my happy memories to escape from the present symptoms I might be experiencing.
I’ve never understood this idea of “being bored.” Do you? What kinds of things do you like to do to keep yourself occupied or if like me, to keep your mind occupied?
I know we all ask ourselves this same question at any given time of the day, week, or year. But since beginning my journey with a chronic illness, I ask it even more than I used to. And now when I ask, sometimes, I don’t know the answer and that is so freaking scary.
An introspective person by nature, I live in my inside world much of the time. And I like it. In fact, if I don’t get enough of that time on the inside, it makes me a little bit cra cra. Stressed. Deflated. I’m not anti-social, just to clarify. I like people. Learning the intricacies of human nature is something of a calling for me; I am a hard-core people watcher. At least I used to be. I used to be better at people. You know, observing them, listening to them, interacting with them. My core has always been my sanctuary. Then along came Lyme.
Although not a fan of worn out cliches, Lyme indeed threw me a “curveball.” Not in the sense that I had my life all planned out and wham, but in the sense that, well, I never saw it, this, Lyme disease, coming. Then, in reality, everyone can use this cliche. I mean, I would guess that most of us are not sitting around thinking, “oh, today something life-altering will happen to me.” It just does. It happens. We do our best to deal and to move on from whatever is thrown at us.
It’s just sometimes, I feel like I missed the curveball. I missed the pitch, the swing, hell, I missed most of the game. It’s almost as if I have been plunked down onto the field, and we’re well into the 8th inning, and friends, I am not winning. I don’t have a strategy anymore. I’m confused about what inning it is. I’m calling a time out with none left. It’s a weird feeling. Maybe not so much as a feeling of being altogether lost, but a feeling of being very disorientated.
Everything about me seems more vague than it ever was before. Lyme has seeped its way into my neurological system, into my brain. Weaving itself into my memories, my thoughts, my ideas, my authenticity, I can’t navigate my way through any of it. I keep telling myself that my foundation, the true me is there, stable, indestructible, unwavering, and most of the time, I feel that this is true. But there are the other times. The times where I struggle to find my way back to Me, to the inside world. Lyme chips away at short-term memory. It can produce “‘a microedema, or swelling in the brain,’ says Bernard Raxlen, MD, a Greenwich, CT, psychiatrist and secretary of the International Lyme and Associated Diseases Society (ILADS)…”
Not remembering how to spell words, how to say a certain word, how to have conversations, are only a few samples of the brain issues related to Lyme that I experience. “This [Lyme disease] affects your ability to process information. It’s like finding out that there’s LSD in the punch, and you’re not sure what’s going to happen next or if you’re going to be in control of your own thoughts,” Dr. Raxlen adds. Ergo the missing of the curveball pitch. Ergo the forgetting of people’s names, of what I just read, of what I just said 5 minutes ago. Even my long-term memory is in shambles sometimes. I try to recall something, digging deep, sifting through that soupy glob of eating cotton candy at a carnival when I was six, scrubbing dishes at the little Mexican restaurant where I worked when I was nineteen, and throwing bales of hay into the wagon when I was ten, all the while merely just trying to remember how to say “FHA” without stuttering 10 times when I get the the “H” on the phone with a customer rep. And, yes, this did just happen to me. Embarrassed doesn’t even begin to describe what I felt as I struggled to get the sound out of my mouth. Let’s try lost, disconcerted, terrified. Yes, that sounds about right.
How will I be able to stay whole if the very center of myself is starting to fade away? If I can no longer reach my inner sanctuary to have a clarity of vision? To know Who I am, my true authentic self?
Who am I?
Holding on with all of my might, embracing all the pieces available to me still, I’m going to get my head back into the game with as much clarity as I can muster, so to speak.
Take care Warriors.
Until next time – B
**If you get a chance, check out “This is Your Brain on Lyme” by Sillia. It explains in much greater detail and with less philosophical musings, the effects of Lyme on the human Brain. A huge thanks to Sillia.
Navigating the nasty mess that is living with chronic illness, keeping in mind the sage wisdom of Lil Wayne ,"Bitch I'm ill not sick," Just out here trying to be the illest.
