Whew! It was a long time before I was ever able or willing to share my story on a public stage, but now that I have, I don't regret it for a minute. I think openness and vulnerability are important aspects to healing, but are often the ones we avoid at all costs. I know I avoided it for a long time!
I finally decided to share my story with the world, not because I think mine is somehow special or extraordinary- in fact it’s just the opposite. Mine is a human story- one of joy and of suffering- of living with a chronic and invisible illness. And I hope to connect with others who have similar stories, so that we can find connection and camaraderie and go on adventures in healing together instead of separately. And for those who are currently in good health, hopefully this provides some insight into another dimension of human existence, a different and perhaps illuminating perspective.
So my story starts out like this...
July 16, 2009- I awoke on a strange note. I couldn’t quite put my finger on what was wrong because it was unlike anything I’d ever felt before. It was like my entire body was buzzing- a tinny frequency that was strong in my feet and rattled everything up to my very brain. I was dizzy and off-kilter, but I had been training hard for my first triathlon so I chalked it up to electrolyte imbalance or muscular fatigue. As soon as I got to work and noticed that the floor tiles seemed to peel up and warp towards my legs as I slowly walked down the hallway, I knew that something was seriously off. Luckily, I only needed to catalog a few samples in the freezer that day and I could put off starting the next round of analysis until later. Looking back on that I am so grateful that I didn’t have to experience my full-blown collapse while standing over a laboratory bench.
I had just graduated with my B.S. in exercise science just two months before, and was poised to begin the master’s program in that same department in a couple short weeks. Everything was looking up: I had conquered undergrad, found a great boss and a great research group, and was ready to take the next step in what was sure to be a successful career in science. I was also in the best shape of my life, logging 30-40 miles per week running, riding by new carbon-fiber road bike up and down the hills by my house, and had just dipped my toes into swimming. My relationship was still new and filled with adventure- the sky was the limit on where we’d go next, which hikes we’d take, which restaurants we’d try, which vacations we’d plan. I could never have seen this coming.
That evening, I laid in bed next to my partner (also a scientist) while she combed the internet for possible pathologies and diagnoses to explain how absolutely terrible and strange I was feeling. I had become so dizzy at this point that I could barely move my head and my legs were twitching and trembling: it felt like my entire nervous system was under attack. Things were going haywire. But of course I’d never felt anything like this before and was scared out of my wits, gulping down Gatorade and water in any attempt to reach physiological equilibrium. It was nearing midnight before I finally relented and asked to be taken to the emergency room and endured the long dark ride with my head over a bucket, not because I was nauseous, but in an attempt to block out the overwhelming sensations that were assaulting my brain.
The next few hours were spent in the absolute hell that is the modern medicine system, which is evident even in the most quiet, efficient, and well-run hospitals. They still have to put you through the ringer, and you’ll still run into nurses and assistants who aren’t willing or able to make you feel relaxed and taken care of. Especially when you present with something so strange, sudden, and unknown. I remember it wasn’t a particularly busy night at the ER, but I could feel the probing eyes of the people in the waiting room and could almost hear their confusion at seeing someone so young and healthy-looking with such fear and pleading in her eyes. I wanted to punch them all. But I couldn’t of course: I was barely able to lift my head to talk to the intake nurse.
They hooked me up to machines, asked me a million questions and came to no helpful conclusions. So of course, the next course of action was to pump me full of drugs and deny me any real diagnostic tests (even though I had great health insurance). Because I was heavily sedated, I don’t remember all the details but I do remember reaching a point where it hit me that they wanted to clear my bed for the next patient and that there was “nothing else they could do for me”. I was still just as sick and miserable, only now I was also loopy and slow, so I gave in and shuffled out of the hospital and into the car, armed with Dramamine and a half-assed diagnosis of “vestibular neuritis”. My partner assisted me into bed and I slept away the next two days, caught in a pharmaceutically enhanced dream world where nothing was real and perhaps all of this was actually in my head after all?
After the drug fog lifted, another fog came to take its place- what I now know was the dreaded CFS brain fog. Where numbers and words didn’t make sense, where I had to ask my partner to repeat herself multiple times, where I couldn’t concentrate on anything for more than 3 seconds. I was so dizzy that I couldn’t walk to the bathroom without help, and I was subsisting on the fallback diet of orange juice and chicken soup. Over the next several months, we batted around the possibilities of West Nile Encephalitis, M.S., Addison’s disease, Epstein-Barr, and even brain tumors. I first saw a doctor on the college campus, who was competent and kind and took her time examining me and ordered all kinds of blood tests. All of which, of course, came back negative. She was at a loss and I was left feeling just a little less hopeful.
I remember doing hours and hours of my own research, writing down and tracking my symptoms, and testing out hypotheses. I even recall several afternoons spent in hot bubble baths or baking in the outside sun in the attempt to raise my body temperature enough to start killing off whatever germ had taken up residence there. What was once an easy walk around the neighborhood park was now a painful, dizzying, heart-pounding pleading to just-make-it-stop and shameful is-it-okay-if-we-turn-back-early event. Everything felt so out of control. But I figured it wasn’t bound to stay that way for much longer. Give me a couple of months of R&R and I’ll be right back where I was before, able to work and play as usual.
However, as the months dragged on, I began to feel the flame of hope start to flicker and fade, along with my patience. With the help of my amazing primary care physician, I lined up a series of exams and tests to try to nail this thing to the wall. Here’s just a sampling of the stops I made along the modern medicine boulevard in the first year of my illness:
· Head MRI = negative
· West Nile virus = negative
· HIV = negative
· Echocardiogram = negative
· Neurologist consult = inconclusive (she said I “probably have a virus”)
· XMRV Viral Culture DNA = positive
o If you remember this blowing up the media in 2010, then you may not have heard about the subsequent uncovering of research fraud a couple of years later. Sadly, thousands of patients lost a lot of money and a lot of hope in the scam that claimed to link CFS and XMRV. Myself, and my own mother were two of those patients.
· RA Factor = negative
· Cytomegalovirus = negative
· HHV-6 = low positive
o I had read a research journal article about Herpesvirus 6 and chronic fatigue and asked for the test. Unfortunately, it doesn’t have much clinical value and a low positive result doesn’t garner any medications or treatments.
· Epstein-Barr Virus = positive
o Of all the blood I gave, the bit that went to this test was the most useful. My results were high positive, with values above 8.0 reference interval (over 1.0 was considered positive), pointing to a possible reactivated infection.
Going off our only viable lead at the time, my doctor and I started me on a regimen of high doses of the antiviral medication, acyclovir, commonly used to treat the family of herpes viruses. There had been a few cases of severe CFS that were completely cured (according to medical literature, anyway) with a cycle of mega-dose acyclovir. When I swallowed that first pill, I was flush with excitement and hope- could this have been it the whole time? And was I about to get my life back?
Exactly two days into my antiviral treatment, I recall so clearly standing in line at the grocery store and suddenly feeling normal again. The dizziness was gone. I felt solid and clear for the first time in months. I felt like myself, ready to run and hike and play again. I stood there in my body, and I started to cry right there in front of all the nice people with their baskets full of apples and milk and bread. It was the most potent and powerful hope I’d ever felt in my life and I was simply overwhelmed with every regained sensation.
Sadly, after another couple of days, the magical ecstasy began to wear off and I noticed all my symptoms start to creep back in. To say I was devastated would be a gross understatement and I was plunged into a deep depression for several weeks. It felt like the one straw that I had finally grasped on to was yanked out of my hands and thrown into a fire. I was still interested in following this EBV hypothesis, but unfortunately the options for treatment are next to nothing. Most people just recover over time and I was told to simply wait it out.
So I waited.
Another few months dragged by, dotted by my failed attempts at finding a cure. I tried a self-prescribed plan of graded exercise therapy, and quit after three days because just two minutes on the spin bike (yes, I said TWO minutes) was enough to cause a full-blown flare up. Then, putting my exercise science degree to good use, I tried an anaerobic form of exercise instead: weightlifting. I pushed myself through 15-20 minute sessions with lots of rest between sets, but was pleasantly surprised to see that I hadn’t lost all of my muscle strength. When I wrapped up though, I was so tired and it felt like my entire body was buzzing (like a shorted circuit) and my face and feet were flushed and red hot. It didn’t take me more than two weeks to realize that this was my body’s way of saying “enough” and that it didn’t take much to “blow a fuse”. Another failed attempt logged in the logbook.
In the spring of 2010, I was feeling a bit better than I had the past summer and thought perhaps I was slowly recovering. I asked for another EBV test and my doctor was intrigued enough herself to order it. The results confirmed my own instincts: the titers were down significantly from >8.0 to between 2-3.8. Perhaps there was a correlation after all. But sadly, waiting was still the only option.
So I waited some more.
It was a full 11 months before I was feeling well enough to return to part-time work. Luckily, my boss was kind enough to give me my old position back and was willing to let my hours be flexible (I know that most people do not have it as good as I did). Being back in the lab and contributing something worthwhile was a bolster to my self-esteem and I started to feel myself getting a little bit better as the months went on. It was tremendously encouraging to be surrounded by people again, stretching my mental muscles, and earning a paycheck. Feeling valued and included once more in the “real world” was a powerful tonic that flushed some humanness back into my veins.
As I got back into the swing of things, I started incorporating some yoga into my routine again (I’d practiced off and on for several years) and was pleasantly surprised to find that it didn’t make me sicker- no “blown fuse” feeling if I respected my body and my limits. So I started practicing regularly, although at a much lower intensity. I remember the first time I was able to hold down dog for a full five breaths and it felt like a miracle. Soon I was developing some healthy muscle strength and definition again, and felt more in my body than I had since this whole thing started. After another year of practicing at home (thank you YogaGlo!), I was ready to rejoin my local studio for some group classes, and although I struggled to keep up in even a beginner’s class, it was so nice to feel part of a healthy community. Gradually I learned which teachers could accommodate my needs, which classes were more low-key, and which times of the day I could reliably feel good enough to go. All of these things were important in defining my personal boundaries and learning to respect my body’s limitations. But boy was that hard on my ego!
Woefully, I developed a shoulder overuse injury (probably from too many imperfect chaturangas) and was forced to scale way back on yoga. I dropped out of the studio and didn’t even come back onto my mat for several months. It was an incredibly difficult time- right when I found the one activity that I could handle and still feel good- right when I was starting to feel strong again- right when I almost felt normal (ish)…things kind of unraveled. I went to an orthopedist, then a physical therapist for a few weeks, who taught me exercises to correct the anatomical imbalance, which of course I would fail to do consistently (I know…).
Around this same time, however, I had enrolled in a couple of fun classes at my local community college- both to get the student loan sharks off my back and to stimulate my lazy brain again. I challenged myself to try new things, talk to new people, and regain some of my creativity with photography, writing, and mixed media. To be around others, engaging in discussions and evaluating art, was a wonderful feeling and although community college was nothing like university, it was a nice easy stepping stone of sorts to getting my old life back. I developed my photography skills and delved into some personal and introspective material, using the lens as a mirror of sorts to see myself and illustrate my fears and suffering. Several relationships formed out of those months at school, both challenging ones and supportive ones, and I felt myself grow and stretch just a tiny bit more than I had before.
After a year juggling my part-time lab job and several college credits, I decided I was well enough to re-apply to the university that I was working at. It not only could get my foot back in the door as a “real” scientist/student, but most of those costs could be covered for me as an employee. I jumped at the chance to rejoin (what I thought was) my tribe and signed up for two rather intensive courses- one lecture and one laboratory in the field of microbiology. Taking notes, asking questions, performing analyses…it was like I was home again, among my type-A high-achieving bright-futured peers, and I started making mental plans for again trying for a graduate degree. I relished the long walk between my lab and the classrooms and teaching labs across campus, striding with purpose and importance.
A couple of weeks into the 2012 fall semester, I bought a bike- a shiny, custom-designed single speed from a local shop (all my previous bikes had long been sold to make up for my lost income) and I had a little twinge of hope that I could finally feel the wind in my hair again. I rode loops around the neighborhood, drawing attention from all the little kids- because who doesn’t turn and look at a sweet white/yellow/pink bike? Then I decided I was ready to attempt the 4.5-mile ride to work and dug my helmet out of my closet. The first day was a rush, and I remember walking into the lab, cheeks flushed and butt sore, and feeling incredibly accomplished. My pride and excitement, however, was not understood by anyone at work, since 80% of them rode their bikes even further every day and why was this such a big deal? (exercise scientists, what can I say?) At least my partner understood why this was a huge hurdle for me, even when she had to pick me up some days because I was too weak and tired to ride back home again, and tirelessly encouraged me to keep on challenging myself.
In October, I made the courageous leap to once again apply to graduate school, this time in microbiology. Somewhere deep in my brain I had the hope of one day becoming a world-renowned ME/CFS researcher and I wanted to join the fight for respect, for funding, and for a cure. That choice felt good, and divinely purposeful- to push myself in the lab and in the classroom- to invest in a personal battle but also for everyone else like me who was suffering. So I lined up my applications, begged for reference letters, and started stacking my upcoming semester with classes that would prepare me for the long road ahead. But of course, we never truly know what is ahead, do we?
Around Christmastime, I noticed that my dizzy spells were increasing in both their intensity and frequency. This had happened to some extent before over the last 3 years, so I didn’t think much of it. I probably needed to just rest a bit, since I’d been tackling several home improvement projects after the semester ended, and was still working and now preparing for a potential stint in grad school. So I backed off a little and knew I could look ahead to some down time after the first of the year. I only needed a few more days, after all, to finish up these renovations and setting up my home office. It would all be fine, and I’d get right back to the semblance of health I had before.
New Years Day roared into existence with full-blown fatigue and severe dizziness, keeping me trapped in bed, clinging to my laptop and my orange juice. I was afraid to move much, so I sat there and watched movies and TV shows online (thank God I had just discovered the genius that is BBC’s Sherlock) and begged my partner to bring me soup and crackers. As the day wore on, I deteriorated into the nauseous, dizzy, shaking mess that I had been 3.5 years earlier, and even looking at the computer screen became unbearable. Around 9pm, bawling and trembling, I asked once again to be driven to the ER and endured another dark and terrifying car ride to the hospital
I don’t know why I was surprised, given my previous ER experience, or why I didn’t anticipate it, but the visit ended up being anything but fruitful. Once again the nurses and doctors were boggled, unsure of how to even examine me, unwilling to give me any real tests, and ended up pumping me full of Benadryl, Ativan, and a whole host of other things. Even through my terrified stupor, I could tell that the P.A. that was assigned to my case wasn’t interested in helping me whatsoever and perhaps even had a touch of homophobia towards me and my concerned partner. After a couple of hours, becoming more and more drugged, we finally gave up and made the long drive back home, where I proceeded to sleep a long dreamless sleep.
About 48 hours later I suddenly felt much better, and was hopeful that this was just some kind of hiccup and I’d be back to work in no time. I tried to do chores around the house as usual, working through the horrendous dizziness and managed to be relatively okay. At least for a few days. Then it finally dawned on me that I wasn’t actually getting any better and that this was a full-blown relapse. I hadn’t even thought that this sort of thing could relapse- I had just been going about my merry way thinking I was slowly getting better and perhaps it would always suck a little bit but I could count on making tiny steps of progress for the next decades of my life. The realization that I was once again back to square one was enough to throw me into a deep depression for several months, but the darkness didn’t truly blanket me until after my marathon of medical exams.
During those next few months I endured another battery of tests, this time with full force, having 3.5 years of CFS already under my belt. I found a physician who worked with chronic fatigue and hard-to-treat patients and was hooked up with the local huge research hospital system. I felt I was in good hands this time, and was confident that we’d uncover the culprit this time around. I was shuffled from specialist to specialist, poked with needles, hooked up to machines, and logged many hours driving on the highway even through snowstorms and hail and fog and wind. Here’s just a sampling of what I went through during the first part of 2013:
· TSH ultra sensitive = normal
· CBC panel = normal
· Vitamin deficiencies (B12, D, etc…) = normal except low Vitamin D
· Complete metabolic panel = normal
· Complete celiac disease panel = normal
· 24 hour cortisol = normal
· 21-hydroxylase antibodies = normal
· Adrenocorticotropic hormone = elevated
· ACTH challenge = elevated morning cortisol, no change with ACTH administration (this one really threw the endo folks for a loop)
· 12- lead EKG
o Sinus rhythm with occasional PVCs
o Low voltage QRS
· T4 and free T4 = normal
· DHEA-S = normal
· Prolactin = normal
· Testosterone = normal
· Evoked potential testing = normal
· Tilt table test = positive
o Diagnosis of POTS, neurocardiogenic syncope, dysautonomia
· Lymph B and NK cells = normal
· Neurology consult = normal
· Head MRI with and w/o contrast = negative
· Lumbar puncture
o Various viral PCR = negative
o Demyelinating disease presence = negative
I distinctly remember the lumbar puncture being particularly awful- not the procedure itself (the neurologist was very good), but afterwards the headaches made me feel like my brain was being stretched and dried against the sides of my skull. Everything hurt: light, sounds, smells, moving even an inch…were enough to make me groan and clutch my head. I spent an entire ten days after that doped up on Vicodin, drifting in and out of sleep and counting down the days until the office called with my results: I was dead sure they would find something. This was my last hope. Finally the day came when I was called back into the neurologist’s office, still in pain but buoyed with anticipation. They had sounded urgent on the phone, so I steeled myself for a real diagnosis- I hoped for anything. Even MS, even some strange infection, even cancer. Because that way I could know what the hell this was. I could put a label on it and treat it and tell people “Oh, I have X ” and see some semblance of recognition in their eyes.
But of course you know what happens next. I sat in the exam room, holding my partner’s hand, and the doctor walked in with a med student who was shadowing for the day. I could already feel the cursory atmosphere whoosh in along with their white lab coats, and felt my throat constrict a little tighter. There was no good news. Because there was no news at all. To say I was crushed would be an understatement. We piled back into the truck and I cried the entire way home. That night, I popped another painkiller and collapsed against the side of the couch and bawled my entire heart out, right there on the living room floor. I felt scooped out. Hollowed. Undone. This was it- my faith in medicine was utterly shattered.
The next several months dragged by, a blur of fear and depression. I had once again had to bow out of my job, drop out of school (I tried valiantly to switch to online courses, but the brain fog prevented me from keeping up with even the most simple concepts), put my future on hold, and worry even more about how the bills would get paid. Luckily, because of a past work promotion, I was eligible for disability leave, so I gathered all the strength and patience I had left to put together applications, submit paperwork, and endure long phone calls. It was one of the most trying experiences of my illness, and it taught me a lot about how our administrative and healthcare webs are strung- to have to beg for money from people in suits on the other end of a phone line because you’ve been struck with something they’ve never even heard of before is utterly humiliating. I had to contact every doctor, pharmacist, and specialist I’d seen, share my confidential medical files, expose my financial information, stomach the probing questions, and jump through hoop after hoop after hoop. Finally I was approved for short-term disability payments, then eventually I qualified for long-term as well, even though I had to file several extension requests since they didn’t understand that I wasn’t “better by now”.
It was over that first year of intense fear and struggle from the relapse that I began a regular daily yoga and meditation practice. It started out with a 5-minute “chair yoga” sequence that left me painfully out of breath, and evolved into 10 and 15 minute restorative classes that eventually I came to cherish. I made space for myself every afternoon, when my energy was the highest and my head was the clearest, to breathe and move in the ways that I could manage. This was also the era that I discovered Headspace, the meditation app that I still use and love to this day. Every day, I knew I could count on at least a half hour of healing, even if that sometimes meant just laying on the bed in silence. Looking back now, I believe this is one of the main reasons that I made the progress that I did, not just physically, but emotionally and spiritually.
In the fall of 2013, even though I felt pushed before I was truly ready (thanks to my disability leave being cut off), I returned to work part time to avoid losing my paycheck. But it turned out to be a short-lived affair, as the lab I was working for lost the funding they needed to keep me on board. So two short months later, I was out of a job- for real this time. Part of me was relieved, as it provided more time for me to rest and heal, but most of me was thrown into panic. I was still too sick for most employers to consider hiring me, and I’d already experienced several instances of discrimination when applying for new jobs. My partner was working tirelessly to hold on to her current job to provide us with great health insurance and some semblance of a paycheck, but several months later that too was gone.
The year I’d previously spent honing my photography and creative skills finally paid off when I decided, essentially out of the blue, to open my own photography business. I figured I’d been told I had a talent, and that I could pace myself enough to bring in some money while taking care of my physical self. So I threw what I could into launching my venture, and booked a handful of gigs in the summer of 2013 to get my feet wet- weddings, family portraits, new babies, and a commercial contract. It was a lot of work on shoot, requiring lots of walking, squatting, bending, and directing, and the editing process was intense and lengthy as well. And while I enjoyed making people and their families happy with beautiful photographs, I knew I couldn’t rely on it to be a full-time job and knew I’d have to keep looking for supplemental gigs.
So once the winter season approached, I began to expand my search for jobs that I could do from home, from the comfort of my couch. It was an ego-smashing time where I finally had to relent to these new restraints and boundaries and accept a new and unknown future. I had done some brief blog writing a few years earlier, so I pursued freelance writing gigs and combed Craigslist every day for a new opportunity until I found a couple hits. One company was an online e-book publisher that paid per book, and the other was a local tech teaching center. And while neither made me rich, and neither was truly fulfilling, they allowed me to afford my supplements and medications, and keep healthy food on the table. I pounded the keyboard off and on for months, until losing the e-book job (the company essentially went under) but quickly found a new position with a local marketing company doing copywriting, and I have stayed on since.
The idea for a personal blog had floated around the back of my head for nearly a year before I ever pursued it seriously. I had always read and enjoyed other people's writings about their struggles and healing and looked up to them like “there’s no way I could ever do that” and “I’m not that good of a writer” or at the very least “mine would never look as nice as theirs”. So I had taken a back seat, consuming instead of creating, waiting instead of taking action, too afraid to put my story out there. Too afraid of rejection, of pain, of harassment, of the utter and poignant vulnerability that comes with an online presence of such a personal nature. Instead I scribbled in my journal about what my blog would look like someday and planned out every perfect detail and told myself I would wait until xyz before I published anything. Until it finally dawned on me that xyz may never happen and that there would never truly be a good time to start.
But finally, early in 2015, I decided to just go for it, and get this website launched! As you can imagine, it has gone through many reiterations and redesigns over the past few years, but it is my passion project and I love every minute of it!
In April of 2015, my life was once again turned on its head and I was forced to endure many difficult changes in a short timespan. My partner left me and asked for a divorce, so I moved out of my beloved home of 8 years and thanks to the generosity of my parents, set up shop in my mom's house. I worked so hard to get on my feet again and find some way to pay my bills and afford my healthcare costs. Plunged into the social welfare system, I found that it is both challenging and enlightening to be a young divorced woman with no assets in this modern world. While this was one of the hardest things I have ever done, looking back, I would not have changed a single thing. I know now that the Universe was simply kicking me out of the nest, and pushing me forward into bigger and better things. Of course, there is still a lot of pain and betrayal lingering around, but this is a daily practice for me, learning to let go, forgive, and focus on what I have now, instead of what I used to have. Life has interesting ways of showing us the light, doesn't it?
At the beginning of 2016, I put myself into a gnarly relapse after a course of doxycycline (for a stubborn sinus infection). It took me a while to regain my strength and stamina. In February, I shelled out a chunk of money to see a naturopath, and had so much hope for that to finally be a turning point in my illness. And while I was impressed by the initial visit, it's clear that she wasn't truly invested in me or my health, and I was essentially forgotten about after I walked out of the door. I admit, the disappointment still stings, but I did gather some good knowledge (a new diagnosis of Lyme Disease) and a new perspective on my condition and new potential treatment options to try. I took this learning opportunity to make lots of new changes in my diet, supplementation, sleep routine, and detox methods, and it's done wonders!
These days, I still have my down days, but they are much less than they used to be, in both frequency and intensity. My herbal protocols and other self-care techniques (influenced by the Primal Health philosophy) have really turned things around for me, and I feel like I get closer to my ideal state of wellness each and every day! Because of these breakthroughs, I decided to put my educational background and my personal experience to work, and become a Certified Health Coach, so I can help others with chronic, invisible, and complex illness.
We’re all struggling with something. So the question becomes not “how is my suffering different from yours” but “what do we have in common” and “how can we help each other along?”
Thank you for reading, and I do hope you’ll join me on my journey...