Wednesday, June 29, 2011

Better Living Through Lyme

by Spirochicks Contributor

Well, all right. Not “better.” How about “more focused?”
A few days ago, I woke up clear-headed for the first time in nineteen days. I reveled in the lack of rubber cement in my brain. And then I was really mad. It’s hard to untangle the thoughts in a linear progression-- they all arrived more or less together, like email after a long server malfunction. The upshot was that two of the most important things for me to focus on right now are my health and my career, and that I’d sacrificed one in a misguided effort to protect the other.
Six years ago, when I started my current job, a woman senior to me, we’ll call her Dana, took an instant dislike to me. I’m not unique in this regard--she is verbally abusive, to some degree, to a lot of people. I can take constructive criticism and I don’t shy away from confrontation, but I can be bullied, and Dana had my number. Eventually, she was in a quasi-supervisory position, reviewing some of my work. Her feedback was sometimes truly helpful, but it was laced with vitriol. Sometimes her language was frankly abusive (unless in your world “lazy” and “stupid” pass for constructive). I did everything I could think of to placate and please her. None of it worked. It’s been awful, but I’ve never thought of saying anything to my boss other than “Okay, it’s still bad now I’m going to try this...” Not a fan of confrontation, he’s been okay with letting me muddle through on my own.
Dana was the source of a tremendous amount of stress for me before Lyme came into my world. My very first herx started on June 3. It’s been bad. My doctor ordered me to work from home, half days, if I worked at all, while I weathered the worst of it. Afraid working from home would draw Dana’s wrath, though, I opted to go in every day. I’ve been sitting at my desk clocking in my four hours, utterly unable to do meaningful work and so exhausted I wanted to cry. The morning my brain de-fogged, the stupidity of this hit me. What Dana thinks of me has no effect on my career, really. What I’m doing to my health in the name of appeasing her...well, that’s extremely unproductive. So I went straight to my boss and told him I couldn’t take it anymore. And an hour later, my work was being funneled to two other seniors for review. A source of agonizing stress for years gone just like that--poof.
I’ll give you that doesn’t sound very exciting, or brave. It would be a more exciting story if I’d gone to Dana directly, defending myself and my fellow abused colleagues in a barrage of verbal glory. But this, I’m learning, is part of how I have to move forward, separating the things that are worth my energy from the things that aren’t. I’ve spent more than enough energy on was time for someone else to have a turn.
Since my Lyme adventure started, I’ve thought about parallel-universe me, the one who doesn’t have Lyme. I imagine all the things she is doing that I am not, that I can not do right now. No, this is not a soothing exercise. When I jettisoned Dana, though, for the first time, I did something I’m pretty sure parallel-me is not, was not, strong enough to do. I’m not saying I’m grateful for the Lyme. It’s making me take my SUV-sized life and cram it into a Civic. I’ve just started packing the Civic, and there are a lot of things I want to put in there. Not loading Dana leaves more room. Getting the blasted spirochetes to let me load the stuff I want is part of the challenge, but learning what to leave on the curb is a good lesson in coping too.

Tuesday, June 28, 2011

Guest Post: The Thief Inside of Me...

By Sarah A, Guest SpiroChick

Editor's Note: In May Sarah submitted this visceral and gripping story about what her Lyme Disease is like on her worst days. We editors sometimes work in Lyme time... slow as molasses. Regardless, we wanted to share part of her harrowing journey, for Lymies and non-Lymies alike.

I wanted to write about what it's like to have Lyme, on a day with a lot of symptom flare -ups, which unfortunately are almost every day for us with Chronic Lyme. A good day for us would be enough pain for a normal, healthy person to go to the emergency room. That type of feeling is the bottom of our pain scale, and on most days, we are wishing we were only feeling a "good day's" worth of Lyme pain.

The worst mornings I wake up sobbing almost as soon as my eyes open. It's hard to explain what it feels like to go from unconsciousness (usually brought on by all the painkillers and muscle relaxers I needed to take in order to lie down for more than twenty minutes without a severe muscle spasm) to waking up and feeling pain flood into every inch of my body. It is an overwhelming feeling that I have never been able to get used to. I never consider medicated sleep to be real, actual sleep. It's just a dark hole I fall into for a while, then they fade off, and my whole body, nerves, and muscles start screaming all at the same time.

My first reaction is to struggle into some sort of position that may alleviate some of it, but I can barely move. I have so little strength in my legs, and my hands are too crippled to lean on them to get up. The only way I can get up on my own is to do a full sit up with no help from any muscle besides my stomach. Some mornings I can accomplish this, other days I am trapped by the pain, squirming and unable to get up or turn over.

If I didn't take the pills, whether they be one of the endless prescriptions of sleeping pills, painkillers, muscle relaxers, or a combination of all three, I would not sleep at all. My body feels completely exhausted, but I can easily not sleep for days, so I choose the black hole of unconsciousness over the hell of being awake and feeling all the pain that creeps into every inch of my body.

I take my medicine at 5am every morning. The schedule consists of probiotics, vitamins, and my anemia medicine with food. Two hours later I take a time released muscle relaxer that helps make the spasms less intense; on top of all that, I also take four painkillers. I try as hard as I can to sleep a little bit after that because even if I'm not tired, I feel my body's exhaustion and it is hard to even lift my hand or finish a sentence. All the resources of my body are being used 24 hours a day to fight an intruder that has been taking over my body for over a decade.

It's also around this time that I must get up and go use the bathroom. Depending on the pain, I may be able to get up with crutches but on the worst days I need someone to help pick me up out of bed and literally put the crutches under my arms that I can no longer lift more than halfway without severe pain in my shoulders.

I have to stand frozen with the crutches for about a minute while the pain in my body shifts to different muscles. My legs are weak and when I start to walk they wobble very clearly. With every step I feel as though my legs are going to give out, shaking under me with no balance. All I have are the crutches that are buried under my arms, since my hands are too crippled to grip them the correct way, I must lean on them completely in order to use them at all.

My bathroom is pretty small for a person using crutches, so moving around in there can be tricky. I think most disabled people have a map in their heads of every little spot on the floor of every room where they believe is the optimal place for a crutch or their cane, or what part of the wall to lean on, to try and minimize as much pain as possible. These actions are very deliberate, thought out movements, every step is slow and concentrated, one wrong twist of my body causes pain that takes my breath away.

When I get back to my bed, I must fall backwards onto it, sort of collapse, instead of sit down slowly like a normal person. My knees are too damaged and weak to support me if I tried to sit down like a normal person. I have to hold on to the handle on my crutch and try to lower myself as much as I can, and then when I'm there, just fall down. Sometimes the falling is hard because I know sudden movements like that bring on muscle spasms or shooting nerve pain.

Although most of the joints in my body have been damaged, most permanently, including three fingers on my right hand I have not been able to use in years, the fingers on my left hand, the toes on my left foot, my ankles, both knees, my elbows, wrists, shoulders, and most of my knuckles are at this point damaged to the point that they need to be replaced if I am to use my hands properly ever again, most of my pain at this point is muscle pain. I would say that the pain I go through on a daily basis is similar to the symptoms of fibromyalgia.

Sometimes people have a hard time understanding how one disease could affect every single system of the body, some people even say it is impossible; that the patients are crazy or lying. The Lyme bacteria, shaped like a corkscrew, burrows into any part of your body it wants to; your joints, muscles, heart, organs, eyes, and even has the rare ability to cross the blood-brain barrier, which means it has the ability to imitate most mental illnesses. I think if you could imagine your entire body saturated with tiny corkscrews eating you alive, it becomes a little easier to understand how someone could have such varying symptoms, and such immense pain.
During the afternoon, around one, it's time for me to take all my antibiotics; I am usually on two at the same time, which I take with food to help minimize my chances of throwing it up. Given that the doses of antibiotics Lyme patients have to take, sometimes it's hard to keep it down, as we really aren't meant to be taking such high doses, and sometimes for years, all of this adding to the toxicity growing in our sick bodies from Lyme die-off. 

I have to wait a few more hours before I have to take my next time-released muscle relaxer, which honestly, and like just about everything else, has started losing its use as I am feeling that it is no longer keeping the spasms from getting so intense.

For some reason, evening and night are my worst times for pain. Spasms become so intense I can't breathe, with the muscles so clenched I cannot expand my chest in order to get air into my lungs. I try to scream for someone to help me, but it's hard when I can't take a full breath. Finally my mother hears me and runs down, I try to tell her I can't breathe, and tell her to push on the spasm on my back. I have to literally scream to get through the pain of pushing the spasm out. It's almost like being stabbed, and I always feel like I am bruised whenever this happens

If I try to lie down, I start to shake uncontrollably, to which I need someone to wrap me in all the blankets we have and try to warm me as best as they can. At first thought to be a Lyme problem, we now suspect it is a symptom of the Ehrlichiosis, another tick-borne infection I am trying to fight. The shaking of my body is so intense every muscle in my body clenches, my jaw locks and all I can do is stare straight ahead and try not to concentrate on the pain.

Honestly, I hate crying about the pain, I hate breaking down when I take two steps and realize I might not be able to take a third at that very moment. I have a pattern, I take a drug that starts to relieve some symptoms, and for several months I enjoy their absence, but then a relapse always comes, worse than the time before, excruciating and seemingly endless.

Seeing the pattern of how much worse these relapses are, I realize with a clear and logical mind that I will most likely never be cured of this disease. It has stolen from me my future, friends and family that I loved, dreams I had, and accomplishments I dreamed of achieving. Now every day I wake up just to try and survive another twenty-four hours. This is my occupation, the job I have had for over a decade now, having become an expert on how to try and keep myself alive.

In the end I know one thing, either this disease will win, or I will beat it. The stale mates are too excruciating for me to deal with, I don't want a future filled with needing the help of those I love, or a life where the things I love are heart-breakingly out of my reach. With every relapse my world gets smaller and smaller, sometimes just confined to my bed, imagining other places I wish I could be, defying my pain and disabilities, enjoying something beautiful that lies beyond the walls around me.

There is not one thing during any day that I do because I want to, my life is calculated out into time schedules, cups of pills and medicine to try and keep it all down, vomiting so much that I throw up blood, waiting and wishing for sedatives to help me black out of this suffering for even a little while; even when I know how much pain will be flooding back into my body as soon as I open my eyes.
May was Lyme awareness month, and I see so many of you living beautiful lives, getting married, having children. I have come to believe I won't have the chance to accomplish some of the wonderful things those I love have. Buying a house and having kids, because of the chance of passing Lyme on to a child I cannot have a baby of my own, I would never risk it.

So, Lyme disease awareness; I suppose all I really want to say is, if you can wake up every morning and get up, go to work, kiss your child, walk out the door, and enjoy your day, please remember that for all of us with Chronic Lyme, we woke up one day, and had those things, (or the opportunity to obtain them) taken from us, and changed forever. It never got better for me, and I will probably never recover. So please, to all those out there, especially with children, take all the precautions necessary to keep your family safe. If I could keep one person from this nightmare of living inside a prison that is my own body, at least some of the pain would have been worth it. 

Please be careful, I want nobody I love to feel this kind of pain, only to understand it, and save themselves from its reaches.  And please, pass this note on, and perhaps save someone else from this fatal infection.

Sarah has battled Lyme disease for well over a decade. She has never known what it was like to live a normal adult life, as she has spent all of it with chronic pain and illness. She spent a lot of those years misdiagnosed with other illnesses, and treating things she didn't have. She is currently writing a book on her experiences with the disease, and currently lives on the east coast of the U.S.  This was written for Lyme awareness month last year. Sarah thought it might be helpful for family or friends of those suffering from the disease, as we aren't always able to articulate exactly what it is like to live inside our bodies.  You can email her at with any questions or comments.

Thursday, June 9, 2011

How do you think about your health?

by Ozone Amanda, Spirochicks Contributor

I do not “have” lyme disease. I have suffered from the effects of lyme disease for years and am currently working to recover from severe lyme infection, but this disease has never been part of my personality.

It’s taken me a while to arrive at this idea. It may seem like mere semantics, but I’ve found that the times I felt the sickest, the weakest, the most trapped-on-my-couch-because-I-had-no-energy-to-move not only corresponded to times when the bacteria and its co-infection friends were on a rampage, but also to times when I believed—without consciously being aware of my belief—in the power of the bacteria. In fact, the rampage may have been aided by an unconscious, further suppression of my immune system, due to depression.

I read about the intelligence of the lyme bacteria, and its prevalence in ticks and other blood-sucking insects—encouraged by warming patterns of climate change, and the limited population of natural predators for carrier animals, such as field mice. All of this information, while helpful in the long run, built the profile of a threatening, menacing, crafty bacteria, which was attacking me and would be very, very difficult—if not impossible—to get rid of. The difficulties of infection are valid, and my fellow lyme sufferers will probably agree that it sometimes feels like the Borrelia burgdorferi (Bb) bacteria is a formidable enemy. But, to give in to the power of the bacteria and disease, is to forget how powerful our own bodies and immune systems are.

On days when my hair is falling out, my stomach refuses to digest, my head feels like one big gray cloud, and I can’t function to do basic chores, my body may not seem very powerful. But, as intelligent as any bug may be, our immune systems are highly evolved and have the ability to fight. Sometimes, it takes only a few days or weeks—as with a cold. Other times, our systems need extensive help—whether from prescription drugs and herbs, or complimentary treatments like cleanses, ozone, intravenous vitamin C, diet, bodywork, psychotherapy, or support groups.

I’ve come to believe that many times we unknowingly get in the way of our own healing. For instance, I probably needed therapy after the passing of my mother, nutritional help to correct my diet, and the courage to leave a job that felt oppressive. Not attending to these needs for many years likely compromised my immune system, and who knows if I’d have gotten this sick if I had listened more to my body and lived less in my mind.

Healing is always a personal journey and everyone’s circumstances are different. But, I know that, for me, health has seemed much more possible and my body has felt much stronger since I took back the “image of power” from colonies of single-celled Bb and remembered that my body, too, is strong. I practice feeling my body, becoming aware of its complaints and movements everyday. It’s had some rough times but, underneath it all, it’s strong and preparing to kick the fight up a few notches. I believe in my health, and know that I am recovering from lyme disease.