Two Steps Forward … Three Steps Back

Well the battle continues while sitting inside my townhouse for the 9 thousandth millionth day of treatment (just let me be dramatic). Apparently the progress you make will come back and bite you in the a%^. The medication helped some of my chest pain and started to lower my blood pressure, which is great. Today, however, I walked out my front door to give my dog a little entertainment only to discover that I can’t feel my left foot, thigh and part of my cheek (the one on my face … my tush is intact .. thank goodness). My first instinct was to pinch everything, which really got me nowhere. This led to panic (which I do a lot). Then, I realized that I’ve had this feeling before, just a lot less intense.

I wrote a few of my Lyme friends, and apparently this is par for the course. I feel like I’m regressing, but they counter that this could be the spirochetes hiding in my nervous system where there is less blood flow. I’ve got a lot of antibiotics in my system in addition to antimicrobial herbs, so perhaps they’ve taken cover. Neuroborreliosis is nothing new … but no one can prepare you for the fear when it manifests in some new way. I feel like the subject of some cruel science experiment. Signing out.

Latest elephant journal Publication: Hot Body In a Box

HOT BODY IN A BOX: WHEN FAT CONTROLS US

I’ve been silly. For the last few weeks, I’ve driven twelve miles to a local spa to bask in the radiant heat of the far infrared sauna. With each visit, I’ve sizzled alone—no other occupants in sight—in my one piece bathing suit.

I didn’t think twice about donning my bathing suit until today. I looked at the glass door with curtain drawn, lock in place. I glanced over my left shoulder, then my right. Just me. Party of one. I wasn’t hiding my unshaven legs or my two half-painted toenails. So why was I covering up the rest of my body?

As soon as I asked the question, the answer came flying out of my subconscious. I didn’t like staring at the extra pooch (as I so lovingly call it) that found its home around my mid-section when I dropped my regular workout routine.

I’m glad I was honest with myself, but the answer still made me mad.

I’m the naked friend: the one who slaps on some big ol’ panties and laughs at my saggy tush. I waded into Ross Lake with nothing on but a headlamp because I wanted to feel free on vacation. I fought hard during my twenties to befriend my cankles, and I don’t own a full-length mirror. Why was I struggling with this?

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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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Bay Area Lyme Foundation

Thank you Bay Area Lyme Foundation for your support along my journey. This independent non-profit works hard to improve testing and treatment for individuals suffering from Lyme disease. If you have time, read about their research efforts.

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