How Violin Music Has Guided Me Through the Dark Times of Illness

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I don’t know what time it is, hell, I don’t know what day it is. All I know is that it’s dark, the cold breath of night hanging over my windows. My rib cage is rising and falling, automatic, the bones sharp and bendy. I can’t see much and my body is contorted with pain, pillows roughly scrambled beneath the heaviest joints. I can feel beads of sweat crawling off my skin and the involuntary twitches. The dream is still vivid.

Terror dreams. I’ve been having them for some time now, an escape from one hell into another. The moment my body refused to move, the dreams became ever more real. I would wake up paralyzed with fear, hands locked into fists. It would take hours for the images to drift away, the eyes to soften. But then as fear subsided, the rage resurfaced. It oozed hatred and anger and it wriggled and writhed through my bones. It screamed in my mind. Only the occasional tears would escape the horror show, evaporating on my dull, white face. I was trapped and there was f*** all I could do about it.

Being sick with an undiagnosed illness that binds your body to bed in knee-jerking agony so that you can’t do jack-shit except stare at the ceiling and accept your fate is horrific enough. But witnessing life from its most outer periphery, isolated, robbed from any sense of existing while everyone gets on with their lives is gut-wrenching.

The spell of isolation rips you to your core. There is nothing but you and your mind. Fortunately, the exhaustion numbed it for most of the time, like television static, an enigmatic blank screen, eyes shifting left to right. In this outer world of solitude, you are suddenly naked and exposed. Your very existence questioned. If every day means a world of pain and sleep, and your most exciting outing includes crawling out of bed to get to the loo, then you might start to ask yourself, what’s the point in living? These questions burn through your mind. The answer is hope, and however inconceivable it might be, you cling for dear life to this tiny, illusionary concept of hope. And hope that this f***ed up situation will vanish like those terror dreams.

It didn’t, of course. And so listening to the days fading by became my next favorite hobby. The sound of the gate opening, the crashing waves in the distance, traffic, birds in the garden, a far-away lawn mower. Together they formed the glue to my daily life. Silence turned into sound, and sound became my freedom.

So captivated by these auditory cues, I would track them throughout the day, wait for a particular bird on its morning call or listen to a neighbor returning home. A deep and intrinsic realization dawned on me, and that was the beauty of the unheard. We live our lives so preoccupied, so “busy,” trying to maintain our sense of control in the mad and ever-changing world that we forget to listen.

Sound is the most beautiful currency in our human world. We can simply close our eyes and let the sound waves take us to distant lands. We can be as sick and as exhausted as it is possible to be, yet we can still listen.

And so, headphones strapped to my ears, I thanked technology as I was swept away from reality into another sound dimension – that of classical music. There is no other form of music in which you can listen to a piece over and over again and discover new moments crystallized in time, new feelings, new emotions. The violin was my voice of preference, maybe because of the birds outside. As soon as the instrument took to the stage my mind flew with the sound of autumn leaves and across the sky into distant universes. I was free, drifting in a fantasy land of music and sleep, my anger dissipating like fragmented storm clouds. I had never felt so at peace; I could have died and I would have been happy.

Like a key in a lock, a small and narrow beam of light was let into my life. It took the form of musical notes, but it was something. From then on a slow and gradual battle begun. It took almost a year before I could properly stand for more than five minutes at a time, and from that very moment I picked up a cheap Chinese-built violin. It sounded horrific, competing with the foxes at night. But it was a focus and a guide. The longer I could stand, the longer I could play (much to the disappointment of my family who had to listen to this). And thus the process continued.

Though I would never call myself a violinist, barely even an amateur, picking up the musical instrument has changed my life. Four years later I was diagnosed with Lyme disease in Germany and have since been on treatment. Now I’m working, laughing, still scrambling up and down the path to health, and to this day, I continue to play.

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What Life as a 'Functioning Lymie' Looks Like on Days You Don't See Me

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I look fine. I may seem fine. I probably sound fine. There are some new photos on Facebook from a couple weeks ago of me out with friends, smiling and having fun, having a few days of normalcy that are momentous and rare to me, but would probably not be a big deal for others – just a normal part of life. They were taken during one of those glorious and all too rare periods when I had several consecutive days of energy and feeling pretty good. (Today is not one of those days.)

But what people don’t see are the days in between – the days I spend in a hazy purgatory of fatigue, fuzz, pain, swelling, isolation and my body’s betrayal against life itself. I have to work tomorrow and I know that somehow I will pull together like I always do and put everything I have into doing my best at work, doing everything I can to just seem normal and do my job to the best of my ability. Thankfully I have been blessed over the years to stagger along in this manner as a functioning Lymie.

I also have a gathering to go to after work tomorrow and this is causing me distress. Why? Not because I don’t want to go, but the complete opposite! I want to badly and it is vitally important to me. But I don’t usually do anything after a work day because I just spent the day giving 100 percent to my job and I will be drained, tired and numb. Instead of having fun I am worried I will just be in a haze of fatigue, and rather than enjoying myself I will be a half-human whose mind is only about 30 percent present and therefore will get about 30 percent benefit. These are the challenges faced by the upright and mobile Lymie. Spoons, anyone?

That said, when others can’t see the sickness (I haven’t lost hair, I don’t have an IV port or a wheelchair, I’m not gaunt or jaundiced), how can I convey what it’s like to be a functioning Lymie?

I also know that the yoyo-ing makes no sense to outside observers, those who don’t understand chronic Lyme; how can you be having fun at a festival one weekend and then in bed unable to socialize the next? Trust me, it’s complicated. Frustrating isn’t a strong enough word for those of us that live through it. It is like being baited with tastes of life and constantly having it snatched away again. So what is life like when I’m not doing so well, and you don’t see me?

I wake up at 10:00 a.m. and don’t feel like moving. I feel groggy and heavy and “hungover.” I had a hard time falling asleep last night, like most nights. It’s a catch-22 because the stuff I take to help me sleep can also leave me feeling tired the next morning. Despite getting nine hours of sleep I don’t feel rested at all. I may need to take a nap today. My brain feels like it is still in that state of shutting down – you know, like how it feels when you are in the process of trying to fall asleep? It is doing the opposite of what it should be doing, being as I am trying to wake up.

I do haul myself out of bed and I try and have some caffeine to counteract my wayward brain and body. I also take my morning pills. Since they are supposed to be taken away from food I wonder as I do every morning whether creamy fluids (hemp and flax milk) are a problem. As usual, the matcha green tea latte isn’t doing it as far as waking me up, and although I am not supposed to have coffee, I reach for it anyway, hoping it will be my nectar of life. Sigh. I know this will continue the vicious cycle of inflammation and irritating my iGg reaction, but I so desperately want to feel awake. Choices, choices…

I then decide to take a bath with Epsom salt and baking soda to help with the pain and stiffness and to help me detox to (hopefully) help with this hungover feeling. After my tea and coffee and morning pills I feel too nauseous to really eat. I will probably have a bite of something here and there, but on most days like this, breakfast and lunch sort of meld together and meals get messed up. I also have my two doses of meds, morning and night, that have to be taken two hours away from food and other pills. I am already off schedule and my day just started. I pretty much know that my dose of cholestyramine will get skipped yet again (like it does most days) because it also has to be taken four hours away from food or other pills. Then there are the pills to be taken with food… Might not get those in today either. This is impossible. I spend maybe an hour in the bath catching up with Facebook  and mail, listening to my current audiobook, reading my Bible app and playing Candy Crush and Words With Friends.

I eventually drain the water and spend at least another 30 minutes sitting in an empty tub because after a bath or shower I usually feel weaker. I’m more lightheaded, struggle a little with feeling breathless and have a harder heartbeat. Something to do with POTS, I think…

I finally get out and get dressed. My equilibrium is off and I’m a little tippy. This is not entirely normal for me and I attribute it to a herxheimer die off reaction. I look down at my body, which I usually try and avoid at all costs; it is swollen, the edema is especially bad and my legs are jiggling like a waterbed (you think this is an exaggeration – it is not). The water retention makes my legs much bigger than they would be. It has been about seven years since I have worn jeans or slacks because of aforementioned fluid. Did I mention it also hurts? Imagine the worst sunburn you have ever experienced. Now picture the deep muscle ache of a hard workout after having not worked out for months. Got it? OK. Now combine the two together and imagine them not on your skin or in your muscles but in all the deep tissues in your legs. Now imagine that pain is constant and you’ve had it for so many years you can’t remember a day without that pain. This is a further incentive to keep a strict diet because increased pain and swelling can be almost instantaneous with ingestion of “bad” foods. (Although I fail so often with a bite here, a nibble there…and remember the problem of coffee!) Thankfully, for the most part, it has been improving. Today the fluid is bad , but the pain is maybe a four out of 10.

I see my face in the mirror for the first time today and it is of course all puffed up, most notably under my eyes. This is also my normal now and I wonder what I would look like “un-puffed.” I do get glimpses from time to time. It’s now into the afternoon. I haven’t eaten much, I feel fuzzy in my head and I’m tired despite my green tea and coffee. I really don’t know what to do with myself today because I’m too tired, so I sit on my bed with my phone. I would love to go on a walk or a bike ride, but I feel like I can’t even force myself to get up and go do anything. I have my standard low-grade headache; this is something I actually don’t really complain about or even acknowledge because it is so normal I don’t know what it feels like not to have a headache.

Many of you wonder why I don’t paint or do something artistic on my days off like this. It’s hard to explain. There is a definite disconnect in this hazy purgatory where you are aware that there is a part of you that can do those things and enjoys doing those things, but you can’t access that piece of yourself even if you wanted to. Believe me, I’ve tried! I’ve sat down and tried to paint on days like this and it’s like trying to draw water from an empty well…it just doesn’t happen. So here I sit, another day of nothing. Another day of waste. A day where the tears do come. Another day sacrificed to the hungry Lyme gods that eat our lives and our souls, one apathetic day at a time.

I’ve given so many years of my life to days like this they can’t be counted. I’ve given my 20s, and now most of my 30s. Only Lymies will understand this, but this disease eats youIt eats your body, your mind…what makes you you. It also eats your time on this earth, like water eroding the shoreline. Today I need to focus on spiritual things, because on days like today that are empty nothings sucked into the void, I have nothing else.

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Thinkstock photo via Thomas Northcut.

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A Peek Inside the Brain of Someone With Advanced Lyme Disease

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A peek inside my Lyme-filled, neurologically impaired, frustrated brain:

Pain. Unbearable pain. Like a pack of wolves is ripping your legs to shreds, piece by piece. Like someone took a thousand hammers to them, smashing away the ligaments and muscles. A type of pain you cannot see from the eye. You look normal. Healthy. We chronic pain patients become a pro at hiding pain, at blending in. It’s just part of the job.

Then there’s the lungs. Every labored breath feels like a 40-pound bag of flour is sitting on your chest. Worst of all is the brain. I was a former athlete, yet I spent four years needing a wheelchair and was often bed-bound. Trapped, like a prison cell. But the bars are invisible, and to the naked eye it looks like nothing’s wrong.

The physical symptoms aren’t nearly the worst though. It’s the neurological stuff. I can handle pain, but when your brain is under attack, it’s infested with millions of spirochetes spiraling their way into every crevice of your tissue, cells, muscles. When your brain is in a battle, you’re not you. You lose your personality. In a matter of a week your reading capacity drops grade levels. Your IQ drops and if you’re lucky, maybe some of it will come back one day. I cannot put into words the feeling when you can’t remember how to pick up a pencil and write. You can sit there for hours and hours, simply staring at it. But nothing changes. You’re no longer you.

This is the reality of advanced, neurological Lyme disease. I’ve come a long way. A hell of a long way. There’s a light at the end of the tunnel – that, I’m sure of. But some days – those days where you’re alive but not really living, subsisting off pain narcotics just to get through the night – those days feel like that light is an oncoming train. That said, there are tomorrows for a reason. Tonight might be one of those nights, but I know without a doubt that there’ll always be better days to come. So you take your treatment, distract yourself from the pain and live to fight another day.

This is my life as someone with advanced tick-borne disease. And sometimes the only relief available is to say to yourself “tomorrow is a new day.”

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Thinkstock photo via Digital Vision.

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Building Myself a New Life From Lyme Disease

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I never thought my life would follow this trajectory. Ever since I was young, I’ve had a clear vision of how I thought my life would turn out: college, writing career, house, family.

Well, at least I got the college part right. I was on track with a couple of writing successes, but then that career took an unexpected departure into the realm of foreign exchange, and several other detours followed. I bought a house on my own when I was 27. Instead of a husband and children, my family consists of my parents, siblings, friends and two lovable mutt-faces. They say if you want the universe to laugh, tell it your plans.

I have a feeling it hasn’t stopped laughing since.

When my health problems started to come to the forefront five years ago, when I almost lost my life to Lyme disease, I had to once again re-evaluate my goals. Dreams had to be put on hold. I couldn’t look too far ahead in case…

Well, in case.

Life was completely upended, irrevocably changed. Everything became a matter of just getting through, of simply surviving.

I worked hard to hold onto what I had. Even though I could barely walk, could barely stay awake for more than a few hours at a time, could barely read or write because my neurological issues were so bad, I forced myself to go to work for an hour or two at a time just so I could maintain some sense of normalcy. Just so I could be sure I still had a job.

Six months into my diagnosis I didn’t think I was going to survive the summer, so I put a plan into motion to publish my first book – a middle grade novel based on my childhood in which I spent many years caring for and watching my grandmother decline from Alzheimer’s disease. Publishing this book meant starting my own business. It meant putting something personal out into the world. And, if the worst were to happen, it meant having something to leave behind.

But instead of getting worse, I got better. Little by little, in small increments over the course of two and a half years, the symptoms began to fade. I worked longer hours at my foreign exchange job, eventually using my skill set to excel my way into a promotion. I took a weekend job at a used bookstore – something that had always been a dream. I began to build up my business not just as a publisher of my own books, but as an editor and creative coach to help others realize their own writing goals. Most importantly, I became an advocate for patients with Lyme Disease – blogging about my experiences and hosting awareness events in my local community.

In short, I began to build back my life.

Things were different the second time around. I was in the middle of a relapse when I resigned from my corporate job due to stress. I tried taking temp jobs until I could figure out my next move, but the Lyme symptoms were returning in full force and, barely two months later, I found myself bedridden again. I sunk into a deep depression. Lyme Disease was hell the first time; I’d struggled so hard to hold onto everything, and I didn’t know if I could do it again. I didn’t know if I could survive a second time.

I didn’t know if I wanted to.

Slowly, slowly, over the course of six months, I began to get better again, but things were different this time. I didn’t have a job to fall back on, and I couldn’t get one because I didn’t know from one moment to the next how my illness would affect me. From neuropathy and joint pain to unbearable fatigue and neurological issues, my health was once again in serious decline. I couldn’t drive farther than a few miles without getting confused and lost. I couldn’t stand a few minutes without every ounce of energy draining from my body. I didn’t know where to turn. I didn’t know what to do.

I had to swallow my pride over and over as I clambered to maintain some sense of control over my life, but this life I’d worked so hard to build for myself – my career, my home, my sense of independence – was slipping through my fingers faster than I could catch it. And so, feeling useless and helpless, I did the only thing I could do when I was stuck in bed for days at a time: I wrote.

I wrote through the pain of this illness. I wrote through the fatigue. Word by word, often completing only one sentence a day, I poured those feelings of loss and grief, of guilt for being a burden on my family and friends, of abandonment by society and the medical community all into my novel. This, I thought. This was the book of my heart. This was everything I could ever want to say to the world – about life, about this disease. If I didn’t survive my illness, then maybe it could help someone else survive theirs.

And if I did survive by some miracle, then maybe my book could help the world understand that the struggle with Lyme disease goes so far beyond the fatigue and the pain.

I survived a second time.

I reached remission from my initial diagnosis after two and a half years of treatment. I was in remission for a little less than nine months when I relapsed. Six months into my second round of treatment, I started to get better. Then, inexplicably, I began to feel much worse. In the spring of 2016, strange new symptoms began to crop up – low-grade fevers, burning sensations in my feet and a sudden decrease in energy once again. We believe I was re-infected with new co-infections, complicating my recovery.

I cried. I prayed. I begged for some relief. I saw a new Lyme doctor. I shook off what little pride I had left and applied for disability. Then, in the rare hours I didn’t spend sleeping or taking medicines and supplements or soaking in an Epsom salt bath, I got to work. I pushed forward with publishing my book – writing and rewriting scenes that were originally nothing more than a jumble of letters and disjointed sentences, thanks to the brain fog and neurological decline. All the while, I continued blogging about my Lyme disease experience, sharing articles and anecdotes on my blog, on Twitter, on Facebook. My doctors and medicine saved my life. Writing and sharing my story with this Lyme community saved my weakened spirit.

The September release of my novel, The Last Letter, put me in touch with some wonderful people and organizations at the forefront of the battle for Lyme disease awareness. I began to cross-post my blog with The Mighty, a great community for patient advocates to share their stories and their voices. I became a contributing writer for new Lyme-related content with Global Lyme Alliance, a leading non-profit organization doing amazing work for the Lyme community both in helping to fund world-class Lyme research and bringing awareness to the general public. In March, I was invited to speak on a panel and share my patient story at a nursing symposium on their behalf.

I couldn’t have ever imagined life would bring me here – with a second book that has the capability of helping so many Lyme patients know they’re not alone in their fight, or sharing my story on stage with hundreds of compassionate people willing to listen, willing to learn. It’s certainly not what I wanted for my life – to still be so sick it’s taken me two weeks to recover, to still be struggling so much financially that I’m always in fear of losing my house, losing my beloved dogs, losing money for the medicine that’s not just sustaining me but saving me.

Even now, when I think about everything I had, everything I worked so hard for that I lost to this disease, I struggle to remind myself I didn’t choose this life of illness. Of course I’d rather be healthy and working a traditional job to ensure my personal independence and financial security. Of course I’d rather be physically healthy enough to leave my house and go somewhere other than the doctor’s office or the grocery store. But this is the life I have now. This is my reality. Day after day, I have to judge the limitations of my body and adjust accordingly. Some days, I can meet friends for dinner. Most days, it’s hard enough to walk from the kitchen to the couch.

I can’t sit back and let my life crumble around me. The fire within me won’t let me and, besides, I’ve worked too hard for too long to allow that. And so, I’m doing the only thing I know how to do: I’m reassembling my life, piece by piece. This time, instead of holding on to what I had in spite of this disease, I’m trying to build a life for myself around this disease – something that will allow me to be independent and financially secure through recovery and into remission. And if this disease comes around again after that, I hope it’s something that will sustain me as I fight to survive again.

I don’t know what this new life looks like. Truthfully, it’s hard to see past tomorrow. But I never imagined my current life would look like this, when I was making those dreams all those years ago, so maybe there’s something to surrendering your plans to the universe, after all.

It’s not as easy as it sounds. Even now, I’m struggling to keep my worries at bay, to keep myself from sinking into a depression that comes from instability. But I’m trying to take comfort in the knowledge that I’m doing my part – that I’m working hard at my own recovery, working hard to create some semblance of security in the face of this illness, working hard to reach people and help them find the courage for their own story. If I can find some purpose in the destruction Lyme leaves in its wake, then maybe it’s this: a brave new life.

In the meantime, I’ll keep building.

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Thinkstock photo via MrKornFlakes.

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The Things I've Learned From Falling in Love, by a Fiancée With Chronic Illness

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Note from the writer:

In May of 2016, I wrote and published the article Dear Future Husband, From Your Chronically Ill Wife. I posted that article on my blog, submitted it to The Mighty, and watched as the hundreds of comments poured in. I had a huge response to that article, and the stories that people shared in their comments either broke my heart, or touched me in a way that made me feel greatly compelled to write a response.

I’d like to point out that at that point in my life when I wrote that article, I had dated my fair share of despicable men that treated me poorly, and that piece of writing was my hopeful plea to someday find someone better. At the time, I had lost my sense of what it truly means to be loved by somebody, and I surrendered to the plain fact that nobody in their right mind would love me the way that I had always dreamed. I felt like I wasn’t deserving of love because I’d be subjected to unbelievable amounts of hate in a way that broke me down and made me feel like “the sick girl,” with nothing else to offer. I have Lyme disease, and because of that, I felt like love wasn’t in the cards for me.  

The good news is that I’ve come to know that I was wrong. I was wrong to think I wasn’t deserving of love. I was wrong think I’d never fall in love the way I had always dreamed. I was wrong to think that nobody would ever love me.

​People expressed in their comments on that article that they love to hear success stories. So I’m grateful for the opportunity I have to share my success story.

“I always thought that there was someone out there who was made just for me, and I’m so grateful that I finally found her!”

I sat in the car with my fiancé the other night when he said that to me. He looked at me with so much love in his eyes and I was filled with a tremendous amount of gratitude for him. It was dark, and the only light that washed through the car widows was the moonlight and the faint porch light that made it possible for me to see the handsome man that sat next to me. Every heartbreak, every betrayal, every tear, every ache, and every pain in my life seemed to lead to falling in love with this man, and knowing that now I have him, gives me hope for my future and healing from my past. He is one of many things that makes my suffering completely worth it.

The man I love has taught me many things about true love that I never considered before. In a way, he’s flown me to the moon and back, and opened my mind to things I couldn’t see by myself. He’s taught me miraculous things that helped me to open my heart to him and trust him completely. There are things in life that we don’t always see, until we find the person that helps us see them. The lessons he’s taught me are part of what makes our love story so special, because I will always treasure these things in my heart.

​Here are the things he’s taught me:

True love does exist. Believing in true love is something I ceased doing after my long line of failed relationships. The men I dated taught me that soulmates weren’t real, love was painful, and that women (specifically a woman who has as many health problems as I do) were insignificant aspects of society. The sweet man I now have in my life taught me otherwise. He taught me that there is someone out there who makes you feel like you’re on top of the world. And when you find that person, you should cherish them, and never let them go. The connection I have with my fiancé is a connection I’ve never had with anyone else, and it’s something I will treasure for my entire marriage. I’m not a mere trophy to him, I’m the woman of his dreams that he loves unconditionally, whether I have Lyme disease or not. That alone means that world to me, and says to me that true love is possible, and that I have found it.

​Loving a sick girl really isn’t that hard. I found a man who supports me in every aspect, including my chronic Lyme. I found a man who holds me through my pain, and sticks by my side for better or for worse, in sickness and in health. I found a man who fights my illness with me, and does everything in his power to decrease my pain. True love extends to hardships and trials. True love endures through it, and grows even stronger as we work through those hard things together. Loving me isn’t hard for my fiancé because of Lyme disease.

When I wrote to my future husband in that article, I was right. He never imaged marrying a sick girl. But he doesn’t hesitate for a second to love me the way that he does. He doesn’t cease to love me because I have Lyme. He loves me even more because he sees the person that I am because of what I’ve been through, due to my Lyme. Loving a “sick girl” isn’t that hard, because he’s not in love with my disease anyway. He’s in love with my heart, my mind, and the things that truly matter.

True love sees beyond the chronic illness. “I’m not marrying a sick girl!  I’m marrying you!” The first time my fiancé expressed that to me, I realized that I’m not merely a “sick girl.” I have a chronic illness that limits my abilities and makes life a little more difficult, but my ability to love and be myself isn’t suppressed due to an illness that is out of my control. My potential isn’t limited because of Lyme disease. My spirit and soul isn’t altered because of the illness that my body houses. He always tells me that he doesn’t see me as a “sick girl.” He sees me as me. Lyme disease is painful and discouraging.  It’s not easy, and it adds extra complications to our lives. But in my personal opinion, Lyme disease isn’t a detour from our happiness. It’s simply a small bump in the road on our way to eternity.

God blesses me when I least expect it. The best love stories are the ones that are least expected. I believe I had to take time in my life to let God write my love story, and when He did, it was more than I ever imagined it to be. I’m incredibly blessed with a man who is there for me and fights with me in this daily battle. I truly believe God lead us to be together. God put him in my life at the right time, and it is through God’s Divine hand that we finally came together. I believe God had a glorious plan for me that I didn’t even have for myself, and because of that I’m able to find joy in the journey, despite my difficult circumstances.

Happiness is a choice. Life is hard! It is for everyone. We’re given trials to help refine us, but along the way, I don’t believe God wants us to be miserable. My Lyme battle helps me believe that happiness is something I discover in the little things. Then my fiancé helps me find the little joys in life that I struggle to see on my own. My fiancé helps me choose happiness, even amidst pain and suffering. When I found the one who brought me the utmost joy throughout considerable amounts of despair, that’s when I knew I had found something special. Something that I will always cherish deeply.

I’m not a “burden.” I’m not a “sacrifice.” I’m a blessing. Every day he goes out of his way to bless my life in little ways that bring me immense healing and comfort. Whether that’s leaving flowers on my doorstep for me to wake up to in the morning, bringing me something that makes treatment less miserable, learning to cook my specialized diet, or even just telling me how much he loves me and why. He makes little sacrifices for me every day to make my life more comfortable, but he doesn’t see them as sacrifices. It’s incredible to me that when you truly love someone, what seems like a sacrifice isn’t really a sacrifice at all. It’s an act of love, and it’s completely worth it because when you truly love someone, you’ll do anything for them.

Never stop dancing. About a month into our relationship he asked me, “How come we never dance?” He pulled me close to him and we slow danced in my basement for no particular reason other than to take a moment and make it perfect. I realized later that we originally met at a youth dance when we were about 15. I never thought that first dance would end up being the dance of a lifetime. Now, we dance at random moments all the time. Every time he asks me to dance, we create a perfect moment together and I realize that he’s taught me throughout our relationship that “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Never stop dancing with the people you love, because those perfect moments in life don’t last forever. I hope to spend the rest of my life dancing with my one true love.

Love can be the most healing medicine. When you find that special person that you want to spend the rest of your life with, you begin to inwardly heal from all of life’s ailments and afflictions. In no way does that mean that my Lyme disease is gone, or that I live a pain-free life, or that things are always easy. It simply means that now I have someone that wants to walk this journey with me.

He’s my rock and my helper. My companion and my partner. He’s my best friend and the healing that he helps me achieve is a blessing that I am eternally grateful for. Love plays a big part in my healing from all of my pain in life. One of the many things that led me to fall in love with him is that he made a sincere effort to understand what I’m going through. He made an effort to be a part of my life, even the parts of my life that aren’t all that pretty. Our relationship is a healing relationship for me. I love him so much, and I can’t imagine my life without him.

​It’s possible to find love even with a chronic illness. It’s not always an easy road, the first person you come across may not be the one, and there may be a load of heartbreak first… But just as I refuse to give up fighting this dreadful disease, I couldn’t give up hope that there was someone out there for me just because I have Lyme disease.  Lyme disease didn’t alter my love story. Lyme disease is just a simple appendage of my love story. It’s there, but it doesn’t put a damper on the fact that I’m marrying the man who was made for me, and whom I love with all my heart. I’m eternally grateful to him and all that he does for me, and all that he continues to do for me.

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How My Husband and I Cope With Lyme Disease Through 'Loving Kindness'

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The practice of loving kindness has new meaning for me since Lyme disease. No surprise that the pain and burden of Lyme disease pushed me to my limit. Loving kindness is good place to go for help.

It is funny, recently a friend of mine remarked that my hubby and I treat each other with love and kindness in a way that is visible. Different from the way long-term couples often interact. She said that she and her ex never managed to get there, to treat each other with respect and kindness even in difficult times. I was so grateful to hear her observation and know it is true. We practice loving kindness with each other in my family.

“Loving Kindness” Helps With Lyme

I said we made a conscious decision to be kind in our treatment of each other. We really try to be consistently respectful of where we are. Don’t say things in spite or frustration that tear each other down. Give each other the space and support to heal and live.

This became so important after our Lyme diagnoses. I was diagnosed first, and as unexplainable pain and brain fog really started to affect me, I could feel my husband’s impatience and lack of understanding. I didn’t know what was wrong or how to communicate what I needed.

We were driving an old car with unbalanced tires. I would ride with vibration suppression gloves on and my hands crossed across my chest to dampen the pain. On certain bumpy roads I would just withdraw and weep in pain. It was hard for him to connect to my experience, but he was still concerned, kind, respectful and tried to help.

I had no energy. I had to say no to most social events. He was feeling lonely and I was very isolated. The pain in my hands and extreme vibration sensitivity got worse. My symptom load increased. At that point I couldn’t push a supermarket carriage. By the time I had a diagnosis, it hurt me just to touch or be touched. My world was shrinking, and that affected him. My pain was shouting in my body, but he couldn’t hear it.

Lyme Support From a Place of Love

Love and kindness motivated his help rather than understanding initially. He wanted to help me however he could. So my hub was the designated driver, taking me to doctors and tests. Love and kindness helped me not to take my pain out on him, at least somewhat. It gave me the will to own my experience without lashing out too much. Love and kindness gave him the will to stay the course and help me rather than cut and run.

Later after his diagnosis he got Lyme-induced gout and was in terrible pain. I had to drive him around. He said to me, I really had no idea vibration could cause so much pain. I am so sorry you were so uncomfortable for months. Now I understand. We both understand about chronic pain and how to help each other treat each other kindly.

That was a real turning point for us. We both recognized how defaulting to kindness save tons of unnecessary arguments and stress. It kept both of us in a place that helped us heal more easily.

How do you get to loving kindness?

Remember “loving kindness” as a default way to treat people in general and loved ones in particular. It can be such a powerful motivator. When I am frustrated with myself or someone else, I try to bring to my mind a loving thing I or they have done in the past. Remember I am lovable and worth loving and they are too.

One way to connect into the feeling is metta meditation. Metta meditation can have some wonderful benefits. Studies have shown it can reduce stress and increase compassion in those who practice regularly. Metta can help how you relate to others, but also decrease pain and support healthy self-esteem.

My meditation practice includes the mantra. I start with myself and use these words.

“May I be filled with loving kindness, may I be peaceful and at ease, may I be well.” (times three)

“May we (me and my husband) be filled with loving kindness, may we be peaceful and at ease, may we be well” times as many times as it takes to feel.

I repeat this, expanding the “we” to include more and more people. For an example practice of loving kindness meditation, click this link.

“Loving kindness” is a solid place for me to go to support healing. Try the practice in your life, I know it helped mine.

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Thinkstock photo by lkoimages

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