When Lyme Turns Blue

Sometimes we stop writing blog posts. We stop answering calls or text messages. We don’t go outside. We avoid social media. Sometimes, we avoid social. So many things we wish you knew about our disease; the faltering of our mental health is not low on that long list.

Sometimes, Lyme makes us sad. It pulls, and paws, and drags us under until we are so disoriented by the darkness, we just stop moving and welcome the rest.

Depression is not a powerful force; not a fierce warrior. It is not strategic and doesn’t attack. It is, instead, a slow sluggish thing. A blob that slithers and slips and lumbers onto our backs when we aren’t looking. It’s only super power? Sheer weight.

The heaviness presses until tears fall and angry, fearful, frustrated words squeeze out. We want to, but cannot contain them. The burden is too much. We cry, talk to ourselves, our God, friends who know. We are prickly, easily irritated in ways we don’t understand. Thoughts, that should maybe remain private, tumble out like pebbles before an avalanche. But the crumbling of the load, the torrent we were expecting, that may have let in some light and air, doesn’t happen. The last of the tears and the words skid to a feckless stop at rock bottom, but the weight remains and pins us to the precipice, trapping everything inside. This sad parasite has cut off our emotion. No more crying. No more words. The relentless pressure smothers all sensation.

That’s when we go away; when we welcome the dark cloak our unwanted passenger has thrown over us. We’re too tired to look for anymore light.

Lyme disease causes depression. Like so much about Lyme, the mechanism is not clear.

Is it the bugs themselves? The little corkscrews twisting into our brains, throwing us off balance, making us see things that aren’t there, and forget things that are? Is it because they are making warm little nests in our heads that shove aside rational thought, knowledge of recent events, the way home from work? They pervert our perspective. Along with their infectious co-infectors, they take over, invading the limbic system wreaking havoc with our feelings and ability to remember. They hijack the pre-frontal cortex until we cannot make decisions, plans, or follow a recipe; until our personality is unrecognizable. They both dull and heighten our senses and do whichever, whenever they please. Captivity can lead to depression and hopelessness. And we are prisoners, no exit left unguarded by those that have conquered our domain.

Maybe the depression comes from loss. We have lost jobs, mobility, cognition, money, goals, and marriages. We keep looking but cannot find our old selves, and we miss them. In the beginning, we were buoyed by our stubbornness – – back when we had no idea what we were really in for. We thought it a matter of determination, that we could will ourselves better, climb into the ring and go as many rounds as needed to beat this disease to a bloody, lifeless pulp. We frustrated loved ones who wanted to help because we continued to insist we could do it ourselves. But now that slovenly despicable weight of gloom wears us down and we give in, and sometimes, on and off, we give up. Some of us once dreamed of hiking the Appalachian Trail, or traveling the world. Some of us just wanted to go to work everyday and take care of our kids, garden, pets. But most of us have had to come to terms with new limitations. We’ve had to lower the bar. Once the worst of the pain subsides, and some of the fog clears from our brains, we can mostly, despite all that’s missing, find contentment but not always. Losing can cause depression and hopelessness, and we have lost much.

Maybe the depression comes from so many unbelievers. They are the majority – – some are physicians, some researchers, nurses, family, friends. They speak to us with condescension, even if they don’t mean to. Imagine losing the ability to walk, being struck with a sudden dementia, having seizures, falling, hallucinating. Imagine a sudden debility or a debility that creeps up slowly so that you don’t know how much you’re about to lose until it’s too late. Imagine having lab tests that prove your body full of infectious disease. Imagine being treated for four years, or ten, or twenty and still your tests return positive. Then someone laughs at you, maybe even your doctor, and tells you Lyme disease is not a chronic infection or that it can’t be contracted in Ohio, or California, or Flordia – – or wherever you live that’s not the Northeastern United States. They dismiss the evidence before them because, they say, ten days, or thirty of antibiotics – – if you’re lucky enough to get that much – – will “cure” you. Think about that. Years of treatment doesn’t erase the disease and you can prove it – – can prove it’s thriving inside, but the person in front of you says not to worry because you don’t have it anymore as if their magical unbelief is all it takes to eradicate your affliction. Denial of personal, undeniable truth can make you feel crazy. It can lead to depression and hopelessness. We have been denied.

Maybe it’s all the pretending. The pretending is so draining. Maybe that’s what makes us depressed. It’s been a few years that we’ve been sick now, and it seems there’s a time limit for lifelong illness that is, surprisingly, not the end of life. We’ve been making excuses well past the time allotted us by the healthy people. It might be different if we were in wheelchairs, or our hair had all fallen out, or our skin were covered in boils and we were clawing ourselves raw with shards of pottery trying to find relief, but most of us look okay. Inside we tremble with fatigue, our hearts are skipping beats, our brains are working overtime to think of the simplest words. When we feel like there’s not enough air, don’t worry, we’ll turn around so you can’t see us gasp. When our joints throb and our skin hurts and our bones ache and our muscles spasm – – it’s alright – – we’ll make sure you don’t know. We’ll keep our anxiety and depression to ourselves and if we can’t, we’ll find a reason to stay away until we can put our “good” face back on. Pretending is exhausting and can lead to depression and hopelessness. We are pretenders, afraid to be “that person” – – the one who’s always sick, who doesn’t feel well, who can’t go, who can’t stay.

We don’t want to be sad. We don’t like being depressed but sometimes, Lyme feels like this.

When You’re Stuck With a Fake Disease

When my test results came they were covered with multiple +’s. My doctor assured me that, yes, I was truly sick; that the myriad of symptoms harassing me were not the imagined folly of an attention seeker, or an attempt to get out of work. They were, he said, signs of a real and, while not curable, treatable disease. I hobbled from his office that day on legs stiff with pain, climbed into my vehicle, put my head on the steering wheel, and wept.

Relief.

I was not glad to know I was sick or to be sick, and had no idea the long road ahead of me. I was simply happy to know I was not insane. In my body, I carried a pathogen – – a wiggly, sneaky spirochete that could be identified under a microscope. So now, when people asked what was wrong, I could say definitively, “I have Lyme Disease.”

Little did I know . . . truly little . . . this disease, at least the chronic version, came wrapped so tightly in politics, it had been strangled into a mere syndrome. Just a collection of symptoms and the claim of unknown etiology.

Once again, almost three years later, I am in my car with another laboratory report. This time, a Lupus panel. I requested it because I suffer so many of the symptoms. This page is full of “negatives” and “within ranges,” and I am weeping. Not out of joy as one might assume but frustration, plain and simple. I was hoping for the words, “positive,” “elevated,” or “out of range.”

You may be thinking, I am insane after all. This has to seem crazy and probably offensive to those who have Lupus. I may, indeed, at this point, be a little mental, and I really do not mean to offend. I will try to explain my desire to be diagnosed with a progressive, awful disease.

As a nurse, I knew going in, there was no test to confirm Lupus. A positive on any one of the many tests commonly run does not mean one has the disease, while a negative does not mean one doesn’t. Confirmation involves, as with most autoimmune illnesses, a battery of tests that could all mean something else, and the clinical diagnosis of a physician based on symptoms.

This has to be exasperating for Lupus patients, always leaving them with a hint of doubt, a bit of worry; the possibility they may have something else instead, afraid they may be on the wrong track. They probably feel some days they would give anything for pathogenic proof.

But, as I have learned, a clear etiology doesn’t always hold up in the court of medical or governmental opinion. A wiggly, active, clever spirochete in your blood, muscles, joints, and organs does not, for some reason, necessarily make a convincing argument.

So I wanted a Lupus diagnosis. I wanted it because it is legitimate in the eyes of the world. And if I am going to have the symptoms of a real disease, I would like people to believe I have one. Lupus, MS, ALS, all count. They are not referred to as “post disease syndromes.” They garner, as they should, sympathy, empathy, walk-a-thons, telethons, marathons, ice bucket challenges. Celebrities raise awareness and money for these ailments. And all the governmental agencies that hold the power and the purse strings take them seriously and search for cures.

These afflictions should get attention. They are serious and devastating and treatment needs to continue to advance. But the horror of one disease does not negate the horror of another.

So I am in my car, weary of explaining; of the questioning looks, implications, and innuendos. Did you see a tick? Did you have a rash? Lyme disease makes your knees hurt, right? It’s caused by a bacteria? I didn’t know that. Well, at least it can’t kill you. Just a few weeks of antibiotics and you should be good, right?

I am in my car thinking that I am done; done feeling defensive and trying to prove this is genuine. Just because I am sick, doesn’t mean I have to become an activist, does it? I can just close up and know within myself that I am really ill. Someone else doesn’t have to believe me.

I am in my car thinking maybe I am crazy; maybe this is all in my head, and I do not really have crippling pain, suffocating fatigue, memory loss. What if my sometimes stumbling, drunken-like gait is put-on, but I’m so nuts that I don’t realize I’m doing it. What if some psychosomatic invention is causing the muscle spasms, the shortness of breath, the heart palpitations? It’s been awhile since I have had doubt about the truth of my condition, but somehow this piece of paper takes me back.

I am in my car crying, experiencing all the symptoms of multiple real diseases that people believe in and care about; suffering as much as some with MS or Lupus, but stuck with a “fake” disease, just this left over syndrome that is supposedly “cured” by 21 days of antibiotics but has cost me thousands over the last three years.

I fold up the results and tuck them in my purse. I don’t even tell my family they were negative. I think they might be disappointed too that I am not sick with something they won’t have to defend or explain. This paper in my purse, doesn’t mean I don’t have Lupus, but it means I can’t say that I do. Maybe I’ll talk to my doctor about testing for something else, or maybe I’ll pretend I’m well. Maybe, as hard as that is, that would be the easiest.

Lyme feels like this.

Sunday Driver

To the long line of drivers behind me, I am sorry. Please know that I am likely not even aware I am driving 40 mph in a 55 mph zone. At some point it will dawn on me, and I promise to hit the gas and make my way to at least 45.

If I could only contact each of you and explain; convince you that my snail’s pace is the best thing for all of us. I just need a little extra time. It’s been awhile since I’ve driven.

Maybe if you’d known me before I got sick. Maybe then you wouldn’t sigh, or roll your eyes and ride my bumper. You might even cheer me on if you knew all I’d been through to get back in the driver’s seat.

Maybe if you’d known me when I was a home health nurse, logging more hours in a car than I can count, you would show some grace. Twenty years, I drove from house to house providing treatments and medicine to those unable to transport themselves. I drove on roads that looked like driveways in weather that forced most to stay inside. Maybe you would see me in a more heroic light; be grateful and consider I may have once cared for someone you love. You might even stop shouting things like, “good grief,” or “c’mon lady,” or worse.

Maybe if you’d seen me on my last day of work; watched me turn in my nursing bag, computer, and name tag; saw me hug, and cry, and say good-bye to my friends and co-workers, maybe then you would find some patience. If you had witnessed my devastation, how helpless I was to save my livelihood in the wake of this microscopic army; if you had seen me when I was a whole person and watched that last piece of my old life crumble, leaving me barely standing – – an isolated ruin. Maybe then your testy fingers would cease tapping the wheel.

If you had watched me grow frustrated when my light switch would not start my dryer, or witnessed my panic when I could not remember the way home, or glimpsed my daughter’s face when she realized I was seeing things that were not really there. Maybe you could find it in your heart, to stop slamming your palms on the wheel, and instead smile and feel happy that some of the cobwebs have been cleared from my mind and, even with an occasional wrong turn, I always find my way home now.

I want to go faster. I do! I long to feel the confidence of a drive at the legal limit of speed. I hate making you wait, being that person who slows everyone down. I want to feel the wind blow my hair and turn up my radio. I want what you want right now while stuck behind me and what you will have as soon as I am out of your way.

I have been forced into the passenger seat for two years, sitting passively saying, “Turn left, now right. Take me to the grocery, then the pharmacy, please. Can we stop at the library?” Or, worse, I ask to be taken, to attend to an errand, and I hear, “Oh, I can drop that off for you!” or “What do you need? I can pick it up and bring it home.”

Being a passenger after having been so capable is like being a very hungry baby, whose mother is distracted and doesn’t bring spoon to mouth quickly enough. And just like that baby wants to grab the spoon and do it herself, so I ache to grab the wheel and deliver myself wherever I need and want to go.

So maybe I will speed up, but then again, maybe I will just pull over and let you pass me by, asking yourself, “What’s wrong with her? Why doesn’t she get off the road?” I won’t get to tell you that there is, in fact, a lot wrong with me but not as much as there used to be. I understand you cannot wait, but the road ahead has been here a long time, and she and I have some reacquainting to do. I am going to look out the window, feel the breeze, listen to NPR, listen to pop music. I am going to choose where to go next. And I am not, nor can I be, in a hurry.

Sorry.

Lyme feels like this.