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 woahscience@gmail.com with any questions or comments.


Kim said...


Thanks for being so brave and sharing this. I'm so sorry that you're living this way. It's too much. I'll send positive thoughts for recovery for you and I really hope people (doctors, IDSA, family and friends) start to wake up to the reality of Lyme.

Alix said...

Sarah, you are so brave to wake up every day with the possibility of having days like the one you describe. I love the line about how our best days would compare to a normal person's. They would be in bed, and we are like, "woo hoo" I only hurt half as much as normal!

Anonymous said...

You are incredibly strong, Sarah. I know it takes a lot to share your story as you did. Thank you for not only sharing so openly, but for educating the community while doing so. I hope that your story is heard, and that you are indeed able to publish a book. I can't wait to see it on the shelves some day, and in the hands of those that need to acknowledge this disease.

Sarah said...

Thanks for all the kind words, every body, I'm happy to share and hoped it might help with educating others that might not be able to understand us so well.

I hope you're all doing well.

Keith Smith (themadchemist) said...

Hey Sarah

themadchemist is back! Greets and cheers to all.

I'm a 46 year old that contracted Lyme at 4, we now believe. I lost my dream job 2 years ago and completely understand your dilema.

Rather then tell you how brave you are, because we all know that, as we have been there, the one thing I will ask is this, have you tried ditching the probiotics?

Taking probiotics while on antibiotics is like mixing acid and base. The probiotics replenish the microbiotal flora of the stomach so that upon the next ABX dose large amounts of the gut bacteria die off and causes GI distress as well as lowering the ABX making it to the bloodstream.

At least for me this was the case.
I have found with each different ABX I take, it takes days or weeks to kill off the GI flora before the cramping and acidic GI is reduced. Probiotics prevent this stablizing of the GI tract. Probiotics should only be used post ABX therapy.
If you drop the probiotics, expect it to worsen briefly before getting better.
With my protocol sometimes I'm on up to 3 ABX, so there's a bit'o experience behind this - although what works for one doesnt for others.

I've been on ABX steady for years and the last 2 without probiotics has been much better.

something to try?

My biggest wake up was never really understanding just how much effort rolling over exerts on the body. You Lay until the effort of moving becomes less then staying. I so well understand the prison ones body can become. and also the loneliness of isolation that neural effects illicit.

You should look into the Marshall Protocol. I know spirochicks doesnt endorse any one avenue but I have been on the MP since Nov 2008 and am better for it.
I still have a long way to go, but the MP gives me hope. It also allows reduced ABX due to its method of re-engaging the immune system.

Believe it or not - I can now cause a herx from moderate exercise. I feel my immune system coming back on-line. Will I ever be ALL better, who cares, for now just better is good enough.
Who of us would ever of thought getting to go to the grocery store would be a highlight.

Keep up the fight

Shine On
themadchemist (spirotech)

Nourishing Words said...

Sarah, your story touches me deeply. I cried reading it, first because I share much of your path and then, because your experience scares me. I suspect it scares each of us to know how very sick you are. You obviously have tremendous strength and courage. Please know that reading your story goes a long way toward making me feel like I am not alone. Thank you for sharing.

Lyme Disease said...

I am so sad to hear what troubles you're going through. Even though I am not in a VERY bad condition from Lyme infection, I do feel very sick on daily basis.

The headaches and pain are insane, at least I can move normally around.

Got Bless