Story 84

How has Lyme Disease affected your life? What inspires you?

A little less than a year ago, I was planning my funeral…something I never imagined I would be doing at the ripe old age of 33. Yet, here I was. Given the long-term decline in my health, it seemed I had no choice but to acknowledge this possible inevitability… Chronic Lyme Disease might actually kill me. But I’m getting ahead of myself – let’s rewind. I suppose I should start with an introduction.

My name is Amber Overholt and I’ve been battling Chronic Lyme Disease for the better part of my life. I was diagnosed in April 2014 and have been in treatment ever since. Like most suffering from this chronic illness, I’ve tried antibiotics, truckloads of supplements and countless holistic therapies. My symptoms have ranged from mild to debilitating, including fatigue, seizures, thyroid dysfunction, Bell’s palsy, migraines, memory loss, vertigo, hormone balances, cognitive decline, tremors, joint pain, anxiety, gastrointestinal issues and everything in between. But (believe it or not), I’m not here to talk about that. About the medications and treatments and the revolving door of doctors, but instead, I want to share with you some of the challenges I’ve endured and the lessons I’ve learned throughout my journey.

This is what I’ve learned about letting go…

Someone asked me recently what I felt was the hardest part of living with Chronic Lyme disease. Though I’d been sick for a long time, it was only within the last few years that everything changed. I was once outgoing and vivacious. I was always sick, but not this sick, so once upon a time, I did actually have some semblance of a life. I loved the spotlight and never missed an opportunity to socialize. I was an avid runner, a lover of fashion and music, with a heart for helping others. I was creative and articulate. I cherished my relationships and prided myself on being a “people person.” Some of this remains true but much of it has been lost, little pieces of myself chipped away, sometimes making me unrecognizable even to myself. How had I gotten here? So I really began to wonder…what was the worst part of this awful disease that has taken so much from me? This took some serious thought. Not to sound like a martyr, but there isn’t much of an upside to work with here… there’s the crippling financial debt caused by the lack of medical coverage for long term treatment, the never ending list of symptoms that can flare up any given day due to any number of environmental circumstances (including food, weather, stress, mold, fragrances and chemicals), the neurological and psychological impact of both the physical and emotional manifestations of the bacteria, the isolation of dealing with a disease few understand and even fewer care to understand… honestly, how do I pick just one? But as I continued to think about it, I realized that throughout this journey I have been faced with one recurring theme time and again: letting go. And that’s when it hit me- that has been the hardest part of fighting this battle. But it’s the hardest lessons that mold and shape us, and I believe learning to let go, while painful, has made me a stronger, better person.

Shortly after my diagnosis, I discovered a wide range of food allergies I had which had been contributing to the inflammation in my body and feeding the bacteria. This is not uncommon in Lyme patients and most have to follow a pretty strict diet. It may not seem like it to some, but not following said strict regimen can be fatal. It may not necessarily present as an immediate life or death scenario if someone with Lyme eats gluten or sugar or dairy (etc) but ultimately these foods feed the bacteria that is already working hard to kill us. So the diet thing is pretty important. That being said, I was already pretty healthy pre-diagnosis, that is, for someone who was constantly sick and had a myriad of mysterious symptoms and unexplained illnesses. I mean, I was a runner and fitness junkie who ate healthily, took my vitamins daily and always made it a point to stay well hydrated. I was kind of a perfectionist like that. Yet, I was always sick. People used to comment that I was the sickest “healthy” person they knew. I was an anomaly. For someone so health conscious, why was I always sick? At work, I lovingly became known as “Typhoid Mary.” So when I found out that 90% of my so-called “healthy” diet was actually making things worse, it was time for a complete overhaul. I had to cut out all gluten (and eventually went on a paleo diet, eliminating all grains), sugar, dairy, eggs, some nuts, whey, yeast, soy, corn, some nightshades and anything too high in carbohydrates. Um, excuse me, but what was left?

At first, I thought it might not be that bad. I looked at it as a challenge. After all, I was already disciplined and used to eating well. I was confident this would be a walk in the park. But let me tell you, there is a big difference between eating well and being allowed to have the occasional indulgence like ice cream or pizza, and suddenly not being able to eat anything you love. I spent the first several months feeling pissed off and hungry all the time. I believe this is where the term “hangry” was coined. And ultimately, I think this was the first time I was forced to learn about letting go.

My whole life had been turned upside down but it was the small things (which didn’t feel so small at the time), like changing my diet, that had the biggest impact, because it forced me to acknowledge every single day that my life was no longer the same. And if I had any hope of normalcy returning, I had to accept that these were the rules and I better follow them. Lyme had made me it’s bitch, and I didn’t take too well to that. I’m not one to be pushed around and I hate being told I can’t do something, so there were definitely some periods of denial and rebellion. But in the end, I came to realize that this was how it had to be, at least for now. After all, change can’t come without change right? And I wanted to get better, so I made up my mind I would do whatever it took. Albeit a brutal one, that was my first lesson in learning to let go.

Just when I thought I was settling into my new routine and I’d made all the changes my Type A/OCD personality could handle, Lyme decided it was time for lesson #2 and threw me yet another curveball. Despite my best efforts (and remember, I’m a perfectionist, so I really gave it my all) to adhere to my insanely strict diet, after a brief period of improvement, all of my symptoms came back with a vengeance. Avoiding dietary triggers definitely helped, and is still a crucial part of the recovery process. However, eventually other factors (such as stress, lowered immune function, other coinfections, etc) came into play, and as a result, so did the return of my symptoms, along with some new ones. Some of the worst among them included severe joint pain, brain fog, vertigo, migraines, cognitive decline (word jumbling, thought processing, memory loss, etc) insomnia, ocular pain, gastrointestinal issues, reduced immune function, shortness of breath, muscle spasms, and recurring upper respiratory infections.

Due to the worsening nature of my symptoms, I was forced to sacrifice other things in my life. I thought changing my diet was hard but soon I would realize things were going to get much worse. Once an avid runner, suddenly I could no longer run due to severe joint pain, respiratory problems, and decreased endurance. This did not work for me!  Running was my therapy! It was a major piece of my identity, of who I was. I kept telling myself it was only temporary but over time, things got harder instead of easier and before I knew it, I could no longer call myself a runner. Truth be told, it’s been over two years and I think I’m still mourning that loss.

I also had to accept other, less serious, but still significant changes in my new lifestyle. I found I could no longer tolerate alcohol anymore, which pretty much eliminated most of the social outings for people my age. Honestly, I didn’t even miss it that much at first. Along with the fatigue and the constant infections it didn’t even seem like that much of a sacrifice. All I wanted to do was stay in bed. So I traded in my stilettos for sweatpants. Wild nights of concerts and cookouts were eventually replaced by Netflix marathons and detox baths. I was too busy being exhausted all the time to really even miss having a life. I was just trying to make it through the day, one day at a time. But then came the biggest blow…about six months into treatment, I had to leave my job. I tried to keep working but the treatments were brutal, and my flare-ups were unpredictable. I worked in a fast-paced environment and eventually got to the point where I was no longer capable of keeping up with even some of my most basic job duties. I loved my job but each day just seemed to become harder and harder. To this day, only a select few know what I really went through as I tried to “power through.” I showed up even when I was vomiting or hadn’t slept for weeks on end. I fought through the crippling joint pain and debilitating migraines. I took naps in my car on my lunch break and sometimes cried in the bathrooms when I was in more pain than I could bear. I withstood ridicule and criticism when I became overwhelmed and frustrated because my brain could no longer keep up with the task at hand. I tried to hide symptoms in an attempt to convince myself that they weren’t really there. But in the end, I couldn’t avoid it. So here I was…no longer able to run, no longer able to work. My social life had become non-existent. And try as I may, I couldn’t even muster up the energy to grieve for any of it for the longest time.

My husband (who, for the record, is amazing and never once made me feel anything but loved), was suffering too. He’d never say it, but my inability to help out around the house or attend family outings left him feeling overwhelmed and frustrated as well. I felt like a shell of a person. I felt angry and helpless. I kept trying to convince myself if I did everything “right”- adhered to my diet, followed my treatment protocols, avoiding triggers, etc., I would bounce back in no time. This is just a setback. This is only temporary. I must have said that to myself a thousand times. Now, granted, I’m not dead, so in the grand scheme of things, this does still count as being temporary. It’s just a much longer version of temporary than I was prepared to withstand. But alas, I found myself being forced to let go of circumstances outside of my control. As I took a moment to reflect on my life, I was faced with the reality of all that I had lost…I was no longer a runner, no longer employed, and barely a wife…Who was I anymore? My entire identity had been stripped away by Lyme. My identity was no longer mine. It was a bittersweet farewell, letting go of the only me I had ever known, but it had happened and I couldn’t change what was already done. All I could do was accept it and move on. Lyme-2, Me-0. Sigh. Letting go sucks.

I tried to adjust accordingly and remain positive as I struggled to get healthy and take back my life. Unfortunately, it wasn’t long before I found out just how much worse things could, and would, get. I had already accepted my life was forever changed, but I remained consistent in my beliefs that my situation was temporary and felt certain I had already been through the worst of it, therefore reasoning that things could only get better. Wrong. You’d think after a while I’d stop tempting fate with my optimism. But hope is sometimes the only thing left to cling to in tough times, so there was no way I was letting Lyme take that from me too. Or so I thought.

After having adjusted to my allergen friendly diet, my new physical limitations and unemployment, I began to feel like maybe I was getting the hang of things. It was all about balance. I just had to take it one day at a time, do what I could, when I could, and soon enough I’d be back on my feet! Note to self: do NOT underestimate such a powerful and complex disease. This is your opponent. As soon as you let your guard down, it will attack. And attack it did. After turning my life upside down and robbing me of my identity, it came after my independence next. Lyme is greedy like that. It will take everything from you and then come back for more.

Another flare-up of new and/or worsening symptoms, likely stemming from coinfections like Babesia, Bartonella, Mycoplasma pneumonia, Epstein Barr, and parasites, came along and rocked my world in a whole new way. Now I was forced to deal with issues like heart palpitations, kidney dysfunction, nerve pain, severe social anxiety, sensory/stimuli overload, muscle spasms, incontinence, jaw clenching, ovarian cysts and severe depression.

Everything I did became hard. Washing my hair was hard. Doing my laundry was hard. Chewing my food was hard. Going to the grocery store practically caused panic attacks. The lights, the sounds, the crowds. It was overwhelming for me and I often had to have a chaperone to accompany me to public places. By the time I would get home I was spent. The entire experience, along with all of the stimuli, was simply exhausting. I struggled to communicate with people. I mixed up words or found myself speaking nonsense as I tried to form sentences. I became frustrated and embarrassed. I began to withdraw, retreating into my shell, and even the most casual social settings were too much for me to handle. Eventually, I could no longer drive. In addition to the almost constant dizzy spells I was having, my brain fog, cognitive decline, and anxiety made it unsafe for me to behind the wheel of a vehicle. At 34 years old, I felt like I was 80. Unable to do much of anything at all without assistance or supervision anymore, I felt utterly and completely useless. And I was helpless to all of it. I remember feeling as if I were being swallowed up by the world around me, disappearing into invisibility. I was isolated, lonely and scared. I felt angry and hopeless and bitter ALL the time. I watched as the rest of the world moved on without me—the people in my life were getting promoted and buying houses, celebrating birthdays and having children and traveling… I felt jealous of everyone who wasn’t feeling how I felt and felt guilty for not being able to be happier for them. I’d tried so hard to stay positive, to be strong, but my health only continued to decline and I was feeling defeated. I never thought I’d be someone who would allow themselves to give into that sort of mentality but here I was, ready to throw in the towel. Suicidal thoughts invaded my brain daily, but even in the deepest pits of my despair, I did not submit to them. I suppose I must have had more hope and faith left inside of me than I realized because somewhere, deep down, I continued to fight.

There have been many ups and downs on my journey with Chronic Lyme disease…periods of progress, and periods of regression. I don’t know if, or when, I will reach remission. I’m still in the thick of it all so I know my fight is not over, but I AM still fighting. I have not given up, and I WILL NOT give up. But I have learned a thing or two along the way. I used to believe that acceptance meant defeat. I didn’t understand that I could accept what was happening and still fight to change the outcome. I thought the two were mutually exclusive.

So I fought, tooth and nail, clawing my way out of the trenches, over and over again, and every time I hit another wall, I would grow more resentful. Though I was fighting for my health, and for my life, my inability to accept my circumstances also meant I was fighting against myself. It was like trying to run through quicksand. Only recently, was I able to understand that acceptance does not mean giving up. Rather, acceptance offers peace during, and in spite of, our darkest storms, when we need it most.

So I’ve let go of all the toxic emotions that I allowed to burrow deep into my tissues and bones, festering, and depleting me of energy and happiness and gratitude. I’ve let go of my expectations for what I thought my life “should” look like at this point. I’ve let go of all the social, environmental and physical pressures that managed to wreak havoc on my body for so long. I’ve let go of the old me and the identity of who I used to be. Instead, I choose to focus on who I am now, and who I am becoming each and every day. And while I’ve not given up this fight, I am finally able to let go.