“This is a book about diagnosing and treating Lyme and other tick-borne infections. But it is also a book about hope. Hope is a central human emotion, misunderstood and often mistaken for optimism, as Jerome Groopman reminds us in The Anatomy of Hope. Having true hope, he contends, is not about holding a rosy and unrealistic prospect for the future. It is not, “Just think positive.” Rather, hope is clear-eyed. True hope is seeing a viable route out of the darkness while acknowledging the obstacles that impede your journey.” –Phyllis R. Freeman, PhD in the forward of Dr. Richard Horowitiz’s book Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease
I love that last line. Hope isn’t just blind faith; it’s recognizing that to get to where you want to be, you’re going to have to go through some shit to get there. That, to me, is less scary than just sitting around, hoping to miraculously get well. It makes me feel a little more in control of my world, even though, logically, I am keenly aware that my world is currently completely unpredictable.
I guess I prefer the illusion.
There are obstacles. That’s for sure. It’s not even 7:00 in the morning, and I’ve been up for nearly three hours already. Don’t misunderstand. I am NOT a morning person. I’m not one of those people who’s chipper and perky when she wakes up. I’m the one who will lie in bed, hitting the snooze button until I’ve wasted all my time. It’s a throw your hair in a ponytail, frantic morning routine here, and we forget something nearly every single day. I put my make-up on in the car on my way to work. (Yeah, I know that’s a bad idea.) And I firmly believe the world would be a happier place if life started after 10:00 a.m. But then again, I’d also like to reinstate mid-day nap time and milk and cookies.
Admit it. Our lives probably peaked while we were in kindergarten.
I am awake because if I don’t drag myself out of bed and get my morning regiment started, I will be in toe-curling pain. I’ve been reconditioned; pain will do that to you. I automatically wake up between 4-4:30. I shuffle down the stairs, taking mental inventory of what hurts on this particular morning. I know that no matter how badly I ache, I have close to two hours before I’ll feel relief. So I have to get started or I’ll regret it later.
First, I take my probiotic and magnesium, which both need taken twenty minutes before I eat. I distract myself with my cell phone. I send a motivational image to my closest friends and family, wishing them a beautiful day. Everyone should wake up to a loving message, right? I don’t feel very positive or motivational, but they don’t need to know that.
I check status updates on Facebook, peruse Zulily and Pinterest, and sort through my emails. I try not to notice that my chest feels tight when I breathe, that I can’t sit with my legs crossed because my joints are already aching, that the wrist brace I wear for compression has become too loose to be effective.
Then I eat. I have to or the next dose of medicine will make me sick. I know this from several head-in-the-toilet experiences, which I have no desire to repeat. I’m trying to change my dietary habits, gradually, so I swap the 2% milk for almond milk. I eat a bowl of oatmeal rather than the brown sugar and cinnamon Pop-tart. Yeah, I’m the poster child for bad eating habits. I’m working on it.
After breakfast, I take my morning dose of medications: a beta-blocker (to regulate my heart rate), nerve blockers, an anxiety pill, an anti-inflammatory, and a couple oral antibiotics. I have various prescriptions for pain, but I save them for when I can’t stand it anymore. I’ve learned mornings are actually my best times physically. I know as the day progresses, I will get worse; so, I wait.
I move to the couch, rubbing a numbing cream on my knees. I don’t know that it’s helping. It’s supposed to take time to build up, and I’m willing to try anything to be able to walk without excruciating pain by the end of each day. Then I wait some more. In a little over an hour, the nerve blockers will kick in, and I will feel the closest to “normal” I’ll feel all day. I distract myself with books –mostly ones about Lyme Disease, mind-numbing magazines, and variety of blogs. Everyone in my house continues to sleep, and I laugh at the irony in all of this.
I’m the sleeper-inner. I’m the one perpetually late for work. Yet, now that I don’t have to get up early and I physically can’t go to work, I’ve done all this before the rest of my family even wakes up. I think of that saying. “God must have a sense of humor, and we are his favorite sitcom.”
By 9:00, the house is alive. Our four children —sometimes five, if my stepson is home —gradually make their way down the stairs. Before my illness, the two youngest would’ve snuggled in bed with me for a while before we started the day, but now they know once Mommy is downstairs, she’s staying there for a while. Stairs are, for lack of a better word, a real bitch. Assuming my knees and hips are cooperating, it’s the shortness of breath that causes me to pause midway up. I’ll lean against the wall and wait for the tightness to lessen and for my upper back to stop hurting as much. It’s a chore to get upstairs, so I limit my trips. I calculate. And the little ones have figured this out, so they come to me, and our morning snuggles now take place on the couch.
From 9 to 11:00 is my window. It’s the timeframe I generally feel my best. Never great. Never even close to the normal I was months ago. But at the very least, somewhat functional. I can stand in the kitchen long enough to make the girls’ breakfast cereal. I do a few small housekeeping chores, picking up small messes and folding laundry. I write thank-you cards. I pay bills. I make phone calls, confirming doctor appointments and refilling prescriptions. I do nothing labor intensive, yet, by noon, I will be absolutely exhausted.
Not tired. Exhausted. There’s a difference. I get frustrated when people complain about how tired they are. Tired people can take a nap, then they’ll likely wake up feeling better, more energetic, recuperated. That’s not what I feel. I gave birth to four babies; I remember sleepless nights and zombie-like tiredness. This is different. It’s fatigue so deep that even if I slept the rest of the day, I would still wake up feeling exhausted.
You know how your whole body aches when you get the flu? How every muscle is sore? Even the hairs on your head seem to hurt? That’s the exhaustion that slams into me by noon, and I know I am finished for the day…except I can’t be because life keeps moving whether you feel well or not.
So I grab my IV bag from the refrigerator and lay it near the fireplace for it to warm to room temperature. (Another lesson learned the hard way —cold IV fluid stings.) I eat again because I don’t want to throw up. I take another handful of pills, adding a steroid to the lunchtime barrage. Then I gather all of the IV drip paraphernalia —two saline syringes, one syringe of blood thinner, alcohol swabs, the IV tubing.
I have mastered the ability to give myself the IV antibiotics, and somehow, I take pride in the fact that I am now able to do it entirely by myself. It feels like I’ve accomplished this Herculean task, even though I realize people do this and so much more everyday. The IV takes about an hour from start to drip to clean up. My girls snuggle up on the couch beside me, playing with their iPads or watching TV, and I thank God that they are mellow, easy children.
By this point, it’s close to 2:00. My home health nurse has recommended that I try to walk to the mailbox each day for some physical therapy. Now is the time; I’ll hurt too badly to move soon. We lace up our shoes and go for our “walk.” What was once a five-minute blink of an eye is now a thirty-minute production. Getting to the mailbox isn’t so bad; getting back is always questionable. My hips lock up, my knees begin to swell and hurt, my chest feels like an elephant is sitting on me. My balance is a little off, so I rely on my daughter’s hand and my cane to keep me moving.
I notice my vision is blurry, even with the new glasses, but I know that once I rest, that will probably improve. Halfway back down the driveway, I can no longer lift one of my legs. I shuffle like an elderly man, and I breathe like a life-long smoker. Just two months ago, I was a healthy 37-year-old who enjoyed jogging three miles every other day. Today, my driveway feels like the course for a marathon.
And I am walking with a cane.
But we make it. I collapse onto the bench just inside our door, concentrate on just breathing for a good ten minutes, and then wrestle my shoes off. I can already feel my knees tight against my sweatpants. I’m going to need to pack them in ice after putting on more cream. I can’t get up yet though. I still feel like I can’t get enough air.
By the way, the technical term for this condition is “air hunger.” At this moment, I feel like air starvation might have been a better label. My whole body is shaking, and if there weren’t children home, this is the point in my day where I’d break down into angry, frustrated and selfish tears. But I’m Mommy right now, and I have to be okay. Or at least look it.
I convince the girls that it would be fun to snuggle up in Mommy’s big bed and watch a movie. This, too, is a production because I have to plan carefully. I can’t breathe well enough to make more than one trip up those God-forsaken stairs, so we gather everything we need very carefully. Sippy cup, snacks, ice packs, cell phone…and up we go. The girls know I’ll have to stop mid-way up, and they pause with me, cheering me on with their beautiful smiles and loving eyes.
It must be scary for them to see their previously solid, predictable, rock-of-a-mom suddenly appearing old with an IV port in her arm, purple bags under her eyes, and barely able to climb the stairs. But they hold my hand and love me anyway. Children are pretty amazing that way. They’ll tell you exactly what they’re thinking (as in…boy, Mommy, your belly is getting big), but they always, always adore you.
After an hour or so in bed, my knees fabulously frozen, the pain is manageable. Other joints ache, like my wrists and elbow, and the muscles in my legs are sore. My vision has cleared up again, but the right eye is drooping from overuse. I have a little palsy in my right cheek. I’ve gained so much weight from the steroids though, I’m pretty sure I’m the only one who sees past the “moon face” enough to even notice the palsy. My chest is tight and my back hurts, but my shortness of breath has eased up since I rested for a while.
At bedtime, I will swallow another handful of pills, this time adding a sleeping aid, a muscle relaxer, and more probiotics. I will make the trek up the staircase one more time for the night. I know should take a bath, but my body is too weak, and with the PICC line in my arm, even just the thought of this is overwhelming.
If I’m lucky, there won’t be an “episode” tonight. These are hard to describe. It’s like barbed wire has been wrapped around a joint, usually my knee. It is random and immediate. The wire tightens and twists, and the barbs dig into my bones. I can tell you with absolutely certainty that this pain is worse than childbirth. And, yes, I gave birth to a nearly ten-pound baby —naturally and without drugs —so I have earned the right to use that analogy. It’s mind-numbing, and when it hits, I’d do absolutely anything to make it stop. But there is no quick fix for it. More ice, pain medicine, elevation, and lots of tears. Thankfully, it usually passes in twenty minutes, but that twenty minutes sure feels like an eternity to everyone in this house.
And that is the most frustrating part of Lyme Disease for me. It’s unpredictable. From one day to the next, from one minute to the next, the symptoms ebb and flow. My chief complaint today may not even materialize tomorrow. But something else will. It effects nearly every system in my body —neuro, cardio, muscular, joint, respiratory. Sometimes simultaneously, sometimes separately. By 6:00 in the evening, I’m counting down the minutes until I can go to bed. I’m exhausted. I hurt. I want to go to sleep with the hope that tomorrow I’ll be a little bit better.
It’s the hope that keeps me going.
I don’t wear rose-colored glasses; I know that life is going to be hard for a long time. There are daily obstacles. I’m not sure if I’m overcoming them or just learning to adapt to them, but I know I’m trying like hell to get well. I am a fighter. I always have been, and when I look at my family, I know I have to do whatever it takes to get well.
I’ve been sick for almost two months, and I’m still trying to figure out the “route out of (this) darkness.” I spend a lot of time researching —reading books, medical articles, and website; learning about homeopathic remedies and detox methods; educating myself of how dietary changes can help; meeting with my team of doctors. I know that I will suffer from the affects of Lyme Disease and co-infections for the rest of my life, so if I want to get any resemblance of my old life back, I have to work, physically and mentally, to make that happen. Since so little is known about the disease and treatment, it can be overwhelming to navigate.
But I will.
Life, in general, is one navigational error after another. It’s messy. But sometimes wrong turns make for the best stories. Heck, if it weren’t for several wrong turns in my life, I wouldn’t be where I am today, married to my best friend and raising five amazing kids in this perfectly imperfect old house.
We will survive the obstacles, we will remain realistic yet hopeful, and in the end, good will come of this.
This is my story. I get to write it. Sure, there may be chapters I’d rather omit, but it’s my story nonetheless.
(The material for this post came from a journal entry I wrote on December 29, 2014. I’m sharing it to educate others on the potential severity of this disease and to provide support to to those already suffering from Lyme. That is my goal with A Broken Crayon — to educate and to support. Please help me do this by sharing this site with others. Thank you for being part of my journey. Let’s color together!)