It Sucks In Here: Understanding Lyme-Related Mental Illness

Lyme-related depression and anxiety can seem like elusive concepts to people that have never experienced them. I mean, it must be weird to watch a healthy-looking woman not function properly, especially when it seems like she has a choice in the matter.

“Why won’t she just get out of bed and do something? She’s been under the sheets all day.”

“There she goes again … freaking out. She says she can’t breathe, but I’m watching her do it right now.”

“When will she stop worrying about every little thing? She has a great life. She needs to appreciate it more.”

I don’t blame healthy people for not getting me. Sure, it can be frustrating when my illness is not understood, but I can’t negatively judge others for NOT feeling what I feel. That was a confusing sentence. But you get it, right? I can’t blame healthy people for not stepping inside my body and strapping on my nervous system. In fact, I wouldn’t want them to. It sucks in here. A lot.

In an effort to help others understand the wild world of Lyme-related mental illness, I’ve decided to blogcast my story. So, here goes …

The panic came first. Like torrential rain. The sky opened up one day and BOOM. If you’ve ever been in the midst of a scary situation, if you’ve ever been mugged or been dangerously close to falling off a really high cliff, that’s the feeling that flooded my body … except it happened when I was listening to a story in my sixth grade classroom. Nothing situational sparked the fight or flight response. It just appeared out of nowhere. I couldn’t catch my breath, my pulse was racing and I felt like I was spiraling towards a horrific death. When this kind of thing happens you wonder about your sanity. Like if you started hearing voices with no people in front of you, you might ask yourself: Am I okay? Which I did. And the answer was ‘No.’

The torrential rain worsened. I accepted my mental move to storm city with grace, but it was hard. Bouts of disassociation soon followed the panic. I would walk into my own home, visually recognize it, but be unable to feel a connection to it. All of the memories to the space where my family and I resided were in my head, but the feelings weren’t accessible. The comfort I usually got from sprawling out on the couch had suddenly disappeared. It was no longer my couch.

And, unfortunately, the disassociation spread. It spread into my body. I began to look at myself in the mirror and see “just a person.” Not Sarah. It wasn’t me. Like some protagonist in an avant-garde horror film, I wasn’t in my body. In fact, I didn’t know where I was. I just knew I wasn’t where I was supposed to be.

The anxiety and depression crept in during the midst of all this. My chest cavity began to grow a ten pound bowling ball that still sits there today. Carrying around that weight at twelve years old was a difficult adjustment, and sent me to bed frequently. After full days with that “giant, new friend,” I slept. And slept. Sometimes I didn’t want to wake up because it was too hard to do stuff with the bowling ball attached. I frequently prayed to get my life-before-the-ball back. I would try to remember feeling light and free, enjoying myself at social gatherings and after school activities … not struggling through them. I began to worry constantly about stuff I’d never thought about before. I developed phobias about being poisoned, dying of rare diseases, falling off of bridges and burning in airplane crashes. These phobias invaded my dreams that always ended with me awakening in a pool of my own sweat.

I didn’t want anyone to know about my invisible bowling ball, weirdo worrying or torrential panic, so I exerted more and more energy to appear normal. In fact, I tried extra hard to be flirty, goofy and aloof. For a year or so I played the role of “a ditzy girl” in an effort to disguise my pain.

Collage made in high school
Collage I made in 1997

High school played out in a similar way. When my parents discovered what was going on, therapists were introduced, medications were prescribed and I was watched more diligently. I developed a nasty habit of cutting myself in an effort to “feel again.” I wanted to get back into my body so badly. I wanted a ticket home. I hated feeling so disconnected. I wanted to bleed out my pain, or at least mask it with a different, tangible kind. The cutting led to a suicide watch that I tried to explain was completely unnecessary. But, who’s going to listen to someone with an invisible bowling ball growing out of her chest?

My body was so profoundly noisy, I didn’t notice what could have been an incredibly telling symptom of Lyme for a long time. Once I recognized it, I didn’t share it with anyone because I figured it was the true sign of a crazy person. The ants invaded slowly. They crawled up and down my nerves at all hours of the day. They crawled into my head, my heart, my stomach, my arms and legs. I had no idea that what I was feeling was actually nerve irritation from the spirochetes (bacteria that causes Lyme). Instead, I figured I was headed for Nurse Ratched’s ward in One Flew Over the Cuckoo’s Nest. And nobody wants to be HER patient. I didn’t share this symptom with anyone, in fact, until I received my diagnosis at 32 years old. For me, this was the scariest of all symptoms. In the back of my mind I figured admitting to ants crawling all over my body would be what finally got me committed to a psych ward. People feel that kind of stuff when they are schizophrenic or on a bad trip. So I dealt with it.

And I dealt with it. And I dealt with it. I’m lucky that I finally found a medication that muted some of my symptoms in college. But it was definitely a half-mute, like what you do when your girlfriend asks you to turn down the football game. It still helped me to function though: the meds in combination with a kick-ass sense of self-awareness that I cultivated over years of therapy and journaling.

Smiling through pain at 15 years old
Smiling through the pain at 15 years old

My self-awareness is what helped me navigate through a variety of incorrect diagnoses that got smacked onto my medical record like big ugly stickers at the dentist’s office. Let’s review them, shall we? There was major depressive disordergeneralized anxiety disorder, panic disorderborderline personality disorderbipolar II disorderspecific phobiapremenstrual dysphoric disorder, and the ever popular seasonal affective disorder. As you can probably imagine, I’m not big on mental diagnoses anymore. In fact, I try to stay as far away as possible. When doctors give you these kind of diagnoses, be careful because you get a big, fat scarlet “A” scratched across your forehead. It’s a packaged deal. You’ll never go into an office again with “just an ear ache.” You will be the “mentally unstable girl with an ear ache” … so you will be questioned about whether or not what you really feel is ear pain. And you can pretty much apply this situation to any complaint you may have in the future.

So you can imagine how my illness played out. Years of “well it seems like you are under a lot of stress, Ms. Herbert. Have you seen a psychiatrist recently? I have the name of one you’d really like.” Years of symptoms that kept accumulating like dirty cockroaches that I’d sweep under my bed. Years of doctors treating me like “a young woman with a pretty rough past.” Years of crying in exam rooms with no answers. Years of hitting a big. fat. wall. All this, while I was acting as a fantastic breeding ground for Borrelia Burgdorferi that would one day show up clear as fucking day on a blood culture.

My body is now a battle ground. I shove antibiotics, herbs, supplements, homeopathics and other prescription drugs into my mouth on a daily basis. Some of them kill the bacteria, which release toxins and make my mental health much worse. These drugs increase the crawling sensation, the panic, the anxiety and depression. They also turn on a massive fog generator that coats my brain in a thick mist. The mist makes me forget basic words like “spoon” and “umbrella.” It takes away my short-term memory and impairs my long-term memory as well. When the generator is on I can’t read, or follow plot lines on television very well. It obstructs basic knowledge I can usually access like “Where am I going?” or “What am I doing right now?”

It’s like I’m driving a car across the Golden Gate Bridge on the foggiest day of the year. I’m squinting. I’m looking for cues that I’m moving in the right direction and not hitting the vehicle in front of me. I can’t see, but I need to keep trying in order to stay safe. 

Sometimes all I want to do is hide under the covers with my bowling ball, my fog generator and my ants. I don’t want to get up and worry about random shit that only happens in nightmares. Sometimes I need to complain about the battle going on inside of me. My internal warrior is incredibly proactive, so advice like “try to appreciate the good things in your life,” or “get up and try to do more stuff” doesn’t feel appropriate or helpful. I’ll never forget when I’d finally mustered up the courage to tell one of my friends in high school about my struggles. She responded with “you’re too pretty to feel that way.” She didn’t know any better … I know. But those words stung. And most Lyme patients have been and will continue to be stung throughout their battles, which is why they might get extra sensitive and angry sometimes.

No more hiding : )
No more hiding : )

The most helpful thing you can possibly do is listen. Listen like you mean it, without looking at a clock or chiming in with a story about your friend’s friend that has lupus or cancer. You won’t be able to feel what we feel, but we will love and appreciate every second you spend with your hand on ours focused on what we are saying. And we want to be there for you too. Even on days when we can’t. We want to get out of bed. We want to breathe like normal people. We want to appreciate all of the beautiful things in our lives. It’s just hard sometimes. Because it sucks in here.

Why I’ve Become That Crazy Lady At The Mall

I’ve become that crazy lady at the mall. The one that overhears your conversation and chimes in. Yes her. She is me. But, why dear God why have I become her?

Today I went shopping for a dress at Anthropologie to wear at an upcoming wedding. I’m not my best after the IV treatment, so I did a lot of “leaning.” I leaned on the clothing racks, on chairs, the walls and the counter at the cash register. Needless to say, I was leaning on the counter when I overheard a discussion about Lyme disease. The woman buying clothes had just been bit by a tick. She was talking about whether or not to go to the doctor. She’d just had a baby and was concerned about antibiotics getting into her breast milk. So, naturally, upon hearing this predicament, I became “the lady.”

I’m not super outgoing so it was a bit painful to interrupt their conversation without knowing the least bit about either of them. I’m sure I turned a nice bright magenta to go perfectly with the pinky golden dress I was buying.

I told her my story. Gave her a bunch of ILADS facts on rates of infection, subpar testing etc. I urged her to go to the doctor. It just so happened the woman working the cash register had a lot to say as well. Her boyfriend had Lyme … So it made me feel less nusto-pants.

From the look on her face … We scared the bajesus out of her. Note to self: Work on your delivery.

Moral of the story (because there always is one) … I’m proud to be the crazy lady at the mall. I’m not going to tattoo a Lyme awareness ribbon on my cleavage or anything, but I will give people the information that no one gave me. I don’t want you to suffer. At all.

And I might buy a green hat … with sparkles … to get into character next time.

Taking Back My Nervous System with IV Rocephin

IV Rocephin Treatment for Lyme

I feel that I can safely say stage 1 of my treatment has come to a close. I managed a major recovery. I spent money on a yoga pass a few weeks ago, and have even ventured out on a few hikes on level ground.

That being said, I know I’m not in remission due to the ongoing neurological symptoms I still struggle with, as well as the occasional lung flares.

I had my first IV Rocephin treatment today, followed by a Meyer’s cocktail. I felt fine and dandy until a couple of hours ago. When I herx, all my symptoms come flying back as if I was never rid of them, which can be quite frustrating. My blood pressure is up, nerve and joint pain are at an all time high, in addition to muscle twitching and shortness of breath. I’m staring at the clock with a bunch of ice packs on my chest and arms. To fight Lyme, you have to brace yourself. The bugs don’t go down without a fight!!

Anyone reading this who might be losing hope, please don’t. I’m soooo much better than I was and you will be too. Everyone heals at their own pace. Herxing stinks … It just does … Any way you slice it. But just remember that you have to go down a couple flights of stairs to climb higher than you were before.

Symptoms

My guess is that your symptoms are all over the map. Mine were. Dr. Richard Horowitz calls tick-borne illness a Multiple Systemic Infectious Disease Syndrome (MSIDS) for a reason: many of your bodily systems are affected. If you think you might have Lyme, look into it. Your doctor’s opinion that your aches, pains and discomforts are all in your head or due to “stress” (my personal favorite) are just that … an opinion.

The bull’s eye rash is not a make or break sign. According to ILADS, “Fewer than 50% of patients with Lyme recall any rash.”

Don’t make the mistake I did. Trust your body. Your problem may not be as elusive as you think. If many of these symptoms ring true for you, find a Lyme Literate Medical Doctor (LLMD). If you don’t know how to find one, email me. I will help you. Tick-borne illness is treatable. You can get your life back.

The following is an incredibly comprehensive list of symptoms given to me by a friend with Lyme. Take a look:

http://www.anapsid.org/lyme/symptoms/

I also suggest filling out the Horowitz Lyme – MSIDS Questionnaire. This will give you a sense of how likely you are to have Lyme. Don’t forget to look at the final page to tally up your score.

https://drive.google.com/file/d/0B9hqzwuTdy6kLWdQdHNIaHZTa2c/edit

New Treatment for Lyme: Not Your Average Infection

Lyme isn’t your average bacterial infection, so treatment plans are usually only effective for so long. In addition, my doctor believes I’m suffering from at least one co-infection (aka another tick borne illness like babesia or bartonella). So our plan for now involves swapping the amoxicillin for plaquenil (a common treatment or preventative for malaria). I’ve taken this once before while traveling. I completely forgot the vivid dreams that come along with its consumption. I call them “technicolored hallucinations” because they are unlike the hazy scenes that normally accompany my sleep. While this could be a recipe for disaster, I’m lucky that my trippy slumber has only produced soul-pleasing entertainment with some top notch visuals. Last night I mentally visited various townhouses, only to discover that the ceilings were actually expansive galaxies: midnight purples and blues caked in sparkling stars … magnificent.

I’ve definitely herxed on this medication, with increasing amounts of pain in my joints. Herxes are always bitter sweet. I know that bad shit is dying, but my body usually takes a dive and I lose my regular functioning. My lungs seem to be less affected this time though, which is a bonus. I’m pretty jazzed that I can walk small amounts without huffing and puffing on other pedestrians in my path.

Due to my ongoing neurological issues, I will be starting IVs once weekly of Rocephin. My doctor will increase this IV treatment up to 2-3 times a week if I tolerate it. Then I will start back on the hyperbaric oxygen chamber. I will climb in right after my IVs to give the artful bacterial poos a real run for their money (P.S. I’m sorry I didn’t post more information on HBOT … I’m working on it right now).

With all this medication, I have frequent blood tests in order to make sure my liver and kidneys are functioning well. I’ve rocked all tests thus far! Yippee.

Dear Lyme, You Will Not Win.

Dear Lyme,

I did an hour long meditation last night. During the meditation I focused on my body and you, my disease, as separate entities. I envisioned my body as completely clean, free and healthy. I then envisioned you next to me, not inside of me. You floated freely, but I did not allow you to enter.

I rejected you. I rejected the notion that I am sick. I rejected my pain.

I embraced healing. I embraced my natural health. I embraced my functioning body.

As you know, I made the choice to jog today (some might call it walking while sweating profusely … whatever). I kept it up for 20 straight minutes, while I separated from you … flying further and further away from your negative energetic vortex. So you know, tomorrow I’m shooting for 21 minutes.

Yours truly.

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The Story of A Caretaker

I met my boyfriend on Match.com. Writing that makes me cringe a little because I never pictured myself as the “online type.” My younger sister pushed me into constructing a profile.

“Everyone does it now. It’s totally normal. You’ll find a much better guy on there then you will at a bar.” And she was right.

Dane and I hiked into Marin Headlands one Sunday afternoon. Looking back on my decision to venture into an isolated location on a first date … yeah, not my smartest move. I placed my mom on speed dial in case anything went wrong. When I saw Dane decked out in the latest REI attire and a license plate that matched his hometown on the website, however, I breathed a little sigh of relief. He looked just like his picture, with bright green eyes and a chiseled jaw line (way out of my league). He spoke genuinely and gently as we made our way through Cavallo Point, underneath the Golden Gate Bridge and up the bike path into the golden hills.

At the time, some symptoms of my disease had already emerged. Bouts of lung pain, shortness of breath, bladder irritation and general malaise accompanied me on my trip with him. That being said, I was so used to my discomfort that it didn’t take away from our time together. I mentioned that I was getting over a virus, and–in turn–he showed a sweet understanding and told me not to worry.

When we reached a nice vista we settled into the dirt, gulped down some water, and opened up. Dane and I both wear our hearts on our sleeves, so it was easy for us to share our positive impressions of one another. My heart did the cliché pitter-patter and the rest is history.

Fast forward six weeks … Dane had moved into my small apartment close to seaside in Sausalito. Besides the bow drill that he had crafted out out of wood from the Adirondacks, he didn’t take up much space. Dane is a simple man when it comes to living his life. While he is very introspective, and offers a lot of depth intellectually, his routines ground him into a steady existence. I loved his consistency and the ease with which he expressed his love for me. Coming from a rocky home as a child and a marriage that ended in divorce, I had been craving stability long before Dane showed up. He was a welcome image of the life I wanted, and had been working with my therapist to create for myself two years prior. I connected with him on a spiritual level, felt strengthened by him and inspired by his ideals. I knew that we would teach each other to grow as human beings. And, if we failed, we’d spend the rest of our days outdoors laughing at our dumb jokes.

Lyme disease crept into our relationship slowly. A few weeks into our courtship, on a picturesque jaunt to Fort Baker, I tearfully admitted my struggles to him. Dane thanked me for my honesty, which opened the doors to more communication. From the very beginning of our relationship, Dane has shown me nothing less than complete acceptance of who I am as a person. For that I am grateful. A year into our relationship I received my diagnosis. When the tears came again (get ready folks, I cry a lot), Dane’s eyes got a little watery too. We were both so happy that I could finally put a name to my illness, and looked forward to the day when I didn’t have to struggle.

Along with Dane came an amazing family with members that had also been stricken by Lyme at points during their lives. In the big picture, I don’t see this as coincidental. If you pay attention, the tapestry of your life has an intricate design with many patterns and signs that serve to support you. Dane’s family possess many of his qualities that I love so dearly, and they accepted my diagnosis with open arms … as did my own family.

This story must seem really peachy … and it is … but I’ve glossed over the battle … so let’s get to the meat of the post.

“Hurricane Lyme” hit in the middle of my nursing program. By the time my symptoms started worsening, Lyme had taken over our lives. Our conversations, our jokes, our cabinets, our excursions, our bedroom design, our sleep cycle all revolved around the disease. Selfishly I thought: well why shouldn’t our lives be dedicated to curing this disease? I’m in pain. I’m suffering. I want to get better so we can just forget this ever happened. I was weak, had limited mobility and reduced coping skills because I was JUST TIRED. Tired of all the bullshit. Tired of appointments. Tired of spending my money and my mom’s money on treatments. Tired of dissociative episodes. Tired of not doing yoga. Tired of not being myself.

What I failed to consider on many occasions was how my illness had affected Dane’s wellbeing and our relationship.

Side note: This post is not intended to detract from the incredible burden of chronic illness. This is simply one girl’s reflection on her own experience.

Dane watched me wither away. The girl with strength and sass with whom he’d fallen in love rarely showed her face at home or at social gatherings. I became incredibly vulnerable, sensitive and irritable, many times accusing Dane of thinking I wasn’t being productive or I was being lazy, when really those were my own insecurities. I hated the fact that I had transformed into a much more helpless human being. I felt guilty that Dane had more responsibilities around the house, that he had to listen to my whining, and that we could no longer go hiking. Dane, a sensitive man himself, felt the negative energy I was carrying and took it on as his own. He fell victim to the hurricane just as I had.

I think we all strive for a peaceful, happy and positive existence. When you live in a home with someone that suffers consistently, this kind of existence gets compromised. As a caretaker, you are always expected to help. If you aren’t suffering, then you should do what you can to alleviate the pain of the individual that is. But the helpers are affected by the disease as well. Dane’s patience wore thin because HE was JUST TIRED. Tired of all the bullshit. Tired of going by himself to dinner parties. Tired of waking up in the middle of the night to comfort me. Tired of Lyme talk. Tired of me not being myself.

And he was entitled to those feelings.

Chronic disease mows over your plans too. The family we wanted to start creating … that got put on the back burner. I will not be in possession of my nursing degree for awhile either, which will affect my employment status, putting more pressure on him to provide. Dane has had to compromise over and over again. God bless him … he keeps doing it … but any normal human being is going to feel disappointed and stressed in this situation.

Dane wants a normal existence as much as I do. He wants to take off on the weekends without worrying about my health. He wants to engage in conversations that don’t revolve around my illness. He is sick of talking about Lyme disease … and I don’t blame him. He wants our kitchen cabinet back, the one next to our stove that used to house all of our coffee mugs and is now spilling over with medication. He needs a cheerful Sarah to show up every now and again to comfort him on HIS bad days, and be his cheerleader when he has lost his motivation. Dane and I are both stricken with Lyme disease, so he will deserve that survivor badge as much as I when all of this is over.

I do not want to lie and say that I no longer expect too much from him. It’s a work in progress. There are days when I am worn out and have nothing to give but anger and resentment. I joke that Dane should put hazard tape around me and the television so no one gets too close, then run like the wind … far, far away. Despite my bad days, I have greatly improved in my coping skills. I practice mindfulness, which has given me the tools to sit with the pain, and accept where I am in my life. I’ve picked up writing in order to work through my emotions. I also spend a lot of time trying to anticipate Dane’s needs and creatively find ways to meet them (creativity is key when you don’t have a lot of energy).

Our relationship is weathering “Hurricane Lyme,” which–frankly–makes me feel proud. It is not easy to go through this or any long term illness for that matter. I call it a hurricane for a reason … it’s destructive. So, I would never judge a relationship that didn’t make it through the storm.

I wanted to post this story, however, as a tribute to an amazing man that will forever carry my heart. Thank you Dane for everything you’ve done for me.
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