white blood cell between red blood cells

How Babesia, One of Lyme's Co-Infections, Has Changed My Life


For most, it starts with a symptom. There may have been others before, but they seemed normal: an achy joint, headache, being extra tired, a flu-like feeling. And they didn’t last. They came; they went. Eventually though, a sign of sickness, so bold, so brash crashes into our awareness and stops us. It may stop us from walking, remembering, speaking, moving, eating. Lyme embeds itself in every part of the body so it has a lot of choice as to how it will damage us.

This is the way we discover we are sick. This one loud signal becomes the bellwether, and all the others begin to ring out until they are a cacophony of indicators and any pretense of health is finally done away with. These symptoms shift and move, take turns. Like a pot of soup, some float to the top, but with a stir those sink, and a different set rises. It’s no wonder it takes so long to put them together, to give them a name. To realize they are Legion.

Lyme patients tend only to recognize the signs by looking back. In the midst of it, doctors try to sort it out. They name a condition to go with each symptom and a drug to go with each name. But when we finally find that one physician whose eyes and mind are open, whose medicine has kept up with the research, we get an answer. We exit his office armed with, and bewildered by, a new truth. We have something. We have Lyme disease. One thing that’s really many things. Legion.

We climb into our car. Dizzy, exhausted, aching, struggling to recall the way back home. But at least now we know why. On the drive, we say to ourselves, out loud, “Oh, that’s why last year I…” or “I remember feeling… It must have been the Lyme.”

The harbinger of my decline, I believe, was a protozoal parasite called Babesia. Most people don’t realize Lyme disease is caused by a bacteria, let alone that chronic Lyme is a whole army of infectious organisms. Although the symptoms of each do overlap, I look back to my beginnings and believe it was Babesiosis that rose up to conquer me first. I have two strains, but their symptoms are similar.

babesia in a cell

My Lyme experience started in a panic. Not anxiousness or nervousness, not fretting or worrying; a panic. My mother had passed. I thought that was why I was lying awake in my young son’s bed trying to protect him from the people I believed lurked outside his window. I thought her death was why I began blacking out – once, while driving, long enough to take out a mailbox. I thought that was why I was seeing things and people who were not really there. It was stress. It was normal.

It stopped, and I moved on thinking I was over it. But during the next seven years, these things would come and go along with other warnings.

In my pre-Lyme existence, I avoided doctors, but two weeks of nightly fevers, vomiting and diarrhea finally forced me to drag my embattled body into my physician’s office. He was surprised to see me. It had been three years, after all. But he managed a whole five minutes with me, ordered a complete blood count and told me to make sure I was up to date on all my “female things.” I complied, and one pap smear, a vaginal ultrasound,and stool test later, I knew I had a benign cyst on one ovary, blood-free stool and a hemoglobin of 9.6 – nearly transfusion-worthy.

 

Sometimes, I imagine the little parasites, like enemy submarines, swimming through my vessels, blowing up red blood cells. Lysis: it means “to loose” or to “unbind.” That’s what Babesia does to a red blood cell. Like a microscopic battering ram, it breaks down the cell wall so all the vital ingredients inside drift away and disintegrate. Other times, it inhabits the erythrocytes, forms them into little groups. “Sludging,” they call it. This clumping against the walls of capillaries, and arteries, blocks roadways built for lifeblood to travel. Red blood cells are transporters, delivering oxygen to every part of the body, and while they’re at it, dispelling carbon dioxide so we’re not poisoned to death. When I am doubled over sucking in air without relief from the feeling of needing it, when I can’t stop yawning, when my hearts jumps like a cricket in my chest or pounds like a hammer, Babesia is at work starving my tissues and organs of air.

I know Babesia well by now and am certain it inhabits every part of me, but it has an affinity for the hypothalamus and prefrontal cortex. I don’t know why this is, but I do know the consequences.

The hypothalamus is a stabilizer. Homeostasis is this gland’s job. It controls the body temperature, thirst and appetite. It lulls us to sleep or drives us to stay awake for sex. Oxytocin, that hormonal hug, is produced by this gland, and helps us feel relaxed, happy, loving, empathetic and overall more mentally stable. The prefrontal cortex houses the personality, and many forms of complex thought: problem solving, decision making, management of social behavior, concentration in the midst of distraction. It manages our moods.

Living with dysfunction in these areas, as well as with red blood cell killers means sudden shifts in mood and emotions, instant alterations in one’s physical and mental state, disruptions in cognitive capacity and depletion of energy.

I am on fire. A hot ache inside my chest, swells, then unfurls. It rolls through my torso, filling the length of all limbs, culminating in a stinging tingle to my extremities. I grip the arms of my chair and lean forward, gasping at the onset of this ignition. I want to tear off my skin, find my way out before my body erupts. Night brings fever and drenching sweats; I seek relief in a long, quiet soak, but the bath water is too warm. I feel my last breath coming; I think my heart will stop. Summer’s heat is a thick sludge. It seals me in, and I slog through, heavy and lethargic. It seeps into my brain, and I cannot think or understand.

I am frozen – my toes cold, pale. I know they will snap if I’m not careful. The sounds of shivers and chattering teeth reveal my location under layers of clothes and blankets. I go outside bundled in long underwear, wool and down only to find myself sobbing because despite the layers, I am unprotected. Glacial air knifes through my skin, my muscles, all the way deep down to the bones. Then I peel it all off like a wild woman trapped in a cage inside a pit of fire, clawing and scratching my way out, fearful once more of an impending detonation.

I am exhausted. The sleep of Babesiosis is a never-sleep. I close my eyes, but don’t rest. My mind is busy, one incohesive dream after another, after another. My eyes open in the morning, but I have only switched worlds from restless night to bone-weary day.

I am a wreck. A cluster of nervous paranoid anxieties fill my head and sit like a stone in the pit of my stomach. A heavy blanket soaked in despair, defeat and sadness drapes my whole self and keeps me pinned down, robs me of light and air. I cannot lift it, cannot crawl out from under so I let it hold me until it doesn’t.

I am numb. My personality has vanished. Where are my emotions? There are days, even when faced with the death of a friend, when I am unmoved. As I exist in this strange anesthetized pose, I am conscious of its oddness; I wonder in those moments why I am not crying, why I am making a pretend sad face as I hug loved ones. Why I feel nothing.

I am confused. Oxygen cannot be late to the brain without upsetting the whole operation. I am sick of standing, clueless, in the middle of a room, no idea why, nor what I am meant to do, and often no memory of getting there. I am weary of panicking when my phone calls are answered because I have no idea who I called or why, or can’t remember answers to questions like, “What’s your date of birth, your social security number, your name?” I’m weary of having to change passwords because I can’t get letters in the right order. Babesia inflames the brain, causes it to swell, blocking blood flow. I know when it happens because I become a fountain of tears: leaks sprung by jabs of despair, anger, frustration, happiness, fear. Emotions bundled so tightly together, fighting for control, they rule me until the Babesiosis is, again, muffled.

I am in pain. There are days Babesia sits in the middle of my forehead and hurts without relief for months. My neck is strained, fatigued. I cannot hold my head upright for long and feel as if I am stopping a locomotive with the back of my skull. At times, I think the little bugs are lodged in my throat because I cough and cough until it’s raw. My muscles spasm and ache, quadriceps unable to bear the weight of a magazine, deltoids feel as if I’d endured 10 tetanus shots the day prior.

Like the contents of my red blood cells, I am undone by Babesia. My personality – who I am – my emotions, thoughts, understanding have all been let loose. I am drifting away. Comfort and peace, things I once possessed, are now unbound. There do not seem to be any walls to keep me together or keep me safe, no place of rest that cannot be invaded by these creatures. “Loosed,” “unbound,” may conjure ideas of freedom, but this is not that. This is a disorientating, perplexing shove from behind into open air with no sense of place, no certain hope of landing.

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Thinkstock photo via Rost-9D.

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Wendy Simpson

My 31-Year Journey to a Babesiosis Diagnosis


I always say to others with a chronic illness that getting diagnosed is half the battle. But what if that battle takes 31 years? What does it take to motivate yourself to seek out a diagnosis for most of your life, and is it worth it? I believe the answer to that is yes!

I grew up in a suburb of Chicago, and when I was 16, I worked as a camp counselor across the street from the Sand Ridge Nature Center. It was a forest preserve we would take our campers to a few times a week, and we spent the rest of the time at our day camp site.

At the end of that summer, I was entering my senior year of high school. And that September is when I started noticing a slowly growing number of symptoms and deficits that no one else around me seemed to be experiencing.

I could barely get up in the morning or stay awake in my 1 p.m. class. I had random stabbing pain in my shoulders, and I could barely walk home after school. I would fall asleep as soon as I got home. I couldn’t work and go to school. I got lost driving to places I had known all my life.

In college, I could barely stay awake during my first and last classes. Every time I went to the library to read, I would read the same paragraph over and over and have to fight to stay awake. Each afternoon, I would take a nap before dinner.

After graduating and moving to Chicago to first work in journalism, then advertising, and finally broadcasting, these symptoms were gaining strength and making it nearly impossible to work and support myself, but I had to keep going to pay my rent.

I was in my 20s when I finally started seeing a variety of doctors for my symptoms. Every test was negative, which was disappointing because you want to know what is wrong with you. The problem was, I had so many random symptoms by then — including weakness, fatigue, aching pain all over, headaches — that nobody could apply them to one condition.

I kept looking for answers. In my 30s, all my tests came back negative. In my 40s, I was married and living in Connecticut. I saw every kind of doctor in Connecticut and New York I could think of, and all my tests came back negative. I had been diagnosed with fibromyalgia in my late 30s and that was fine for a few years, but it didn’t explain why I felt like I was dying and why I would sometimes sleep for a month. 

A rheumatologist at NYU Medical Center in Manhattan said you may have something they haven’t discovered yet — and may not in my lifetime. He sent me across the street to the Hospital for Orthopedic and Joint Diseases for physical and occupational therapy, even though I had no diagnosis.

One evening in the spring of 2007, I was standing in the upstairs office of my townhouse and thinking to myself — what was I doing right before I got sick in the fall of 1976? What was I doing that summer? And it came to me. I was a camp counselor that July and August. I wanted to make sure I had that right, so I turned around and went to an expandable file where I had kept one W-2 from every job I’d ever had. And there it was at the bottom of the paper-clipped stack. The first job I’d ever had was as a day camp counselor in South Holland, Illinois in the summer of 1976, just one month before I got sick.

There was one type of doctor I had not been to yet, so I made an appointment to see an infectious disease doctor less than one mile from my house. By this time I was having all my symptoms, plus migraines at least five out of every seven days. In other words, I spent days on end in bed, weak and in excruciating pain. 

At my appointment, I told the doctor my symptoms and that I had been a camp counselor before I got sick. Then I looked her straight in the eye and said the thing that made all my previous doctors so uncomfortable — I said, “There is something wrong with my brain.”

The doctor got together with my neurologist down the street I had been seeing for pain management, and together they ran about 20 tests. And for the very first time in 31 years, one of those 20 tests came back positive. I was positive for Babesia microti, which is spread by deer ticks. Did the doctor treat me? Yes. Did I get better? Yes! Am I cured? Nope. I have chronic babesiosis (Babesia), which has symptoms similar to malaria.

Like I said, getting diagnosed is half the battle. It changed my life. I responded to treatment. The point is that I never gave up searching for a diagnosis, because regardless of what everyone else said — I knew there was something terribly wrong with me. And I was right.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

Man using laptop computer in home interior.

The Surprise Gift Multiple Sclerosis Gave Me


As the result of an uninspired performance in high school, I had very few exemplary academic achievements. In my sophomore year, I did take a standardized accounting test and scored among the highest in our school district. It was as much a surprise to my teacher as it was to me!

Performing so well on that test was a pivotal moment in my life because it prompted me to study accounting at college. My undergraduate degree led me to my first job where, after meeting my wife, the next chapter of my life began.

However, not long ago, a memory of my senior year of high school popped into my head. It was a surprising moment from government class.

It was for an writing assignments titled, “What does government mean to you?” I can’t say I remember what I wrote, although I do recall having a great time completing it. But it was the reaction of my teacher that shocked me.

He asked to speak with me as class was ending. I still remember the snickers from my classmates who thought I had gotten into trouble (I figured I was, too!)

Instead, my teacher told me he thought my paper was one of the best things he’s read in a really long time and that I should be in his Advanced Placement (AP) class – all just based on what I had written.

Although I was surprised and grateful, I was also just 16 years old, so it mostly went in one ear and out the other. And nothing more came of that moment.

Last summer, a good high school friend of mine asked if he could share my writing about living with multiple sclerosis with his students. He was inspired by my work and wanted to incorporate some of my stories into his lesson plans on how to write with meaning and passion. Flattered, I agreed. A few days later, we spoke in more detail about his class, and during the conversation, he referenced our high school days and told me he was always in awe of my writing.

My friend, who teaches children every day (including a job at the Kahn Academy) and has also spent time on stage as a comedian, is an extremely talented communicator himself. So I was stunned to learn my writing motivated him to become a better writer.

We all have our dream jobs and not many of us get to actually live them. The examples are numerous: An aspiring musician who works an office job because he has a young family and bills to pay or the lawyer who’d rather own a bakery but doesn’t want to risk trading a stable job for a failed business.

Working in an office or arguing before a judge isn’t who they are, but for whatever reason, it’s the road they’ve found themselves on. Choices made when they are barely 18 — the college they study at or what field they major in — sends them in a direction that’s opposite of their passion.  But if a genie came along tomorrow and granted them the opportunity to change paths, they would instantly take it.

Everyone understands these types of scenarios, and perhaps a few of you are currently living one.

But what if I told you there might be something out there for you — a passion or talent — and you don’t even know what it is yet?

I would have never become a writer if I wasn’t diagnosed with multiple sclerosis. Even typing that, I have to take a moment to let those words sink in.

This other part of me — that a prior teacher had alluded to or a friend had admired me for — would still be hidden away and lost in the perpetual motion of everyday without MS.

Living with MS isn’t easy for me — there isn’t a day that goes by where I don’t encounter blurred vision, shooting pains, tingling sensations, numbness or fatigue. How can something so devastating to my health and personal life also be the inspiration behind what I’ve now become?

And so I wonder — is my situation unique? Or are many of us living our daily lives unaware that we are only scratching the surface of our potential, an undeveloped talent or unknown passion?

I don’t have the answer to these questions but I think it’s worth it to take a few moments to pause and reflect on it. While you’re taking a moment to smell the proverbial roses, close your eyes and remember who you were while dreaming about who you can become.

Let your internal compass lead the way.

Follow this journey on A Life Less Traveled.

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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A Letter to Myself at the Beginning of My Journey With Crohn's


Imagine cleaning your room one day to find a mysterious letter from your future self. Would you dare open it? Would you take your own advice? I’ve always wished “future me” would send me a quick note to encourage me in the right direction, warn me of heartbreak or confirm I made the right decision.

If you were given the chance to chat with the old you, would you? Would you warn them about that bad breakup? Admit their favorite jeans are a hideous excuse for pants?

In 2013, I would have given my right arm for a mysterious note from a future self. I had no idea my life would take an unexpected turn when I became seriously ill before being diagnosed with Crohn’s disease. I’ve heard nearly a million pieces of advice and suggestions from other chronic illness warriors, but I always wondered what I would tell me. Well, this week I sat down and figured out just what I would tell the 2013 version of me.

Hi Becki,

It’s 2016 me — well, you. Crazy, I know! Right now, you’re buckled in, and the biggest, scariest roller coaster of your life is about to take off. You’re going to scream, cry and laugh more than you can even believe. But don’t worry, I’m here to give you pointers on how to get through this ride in one piece — well, with most of your pieces.

As this year began, you started to experience some less-than-glamorous issues. The bathroom isn’t the most fun place to hang out, I know. It’s hard to explain why you’re constantly going. And the poor, poor person that has to use it after you? Bless their soul.

“It’s so embarrassing!” you say. Well, get used to it, Buttercup: this is the easy part. Now I know you think it’s just a little stress. It’s not! Go to the doctor ASAP! They’ve seen and heard worse. Be honest and ask for help. When you finally do get help, do some research on the tests they are going to run. I promise, they sound scarier than they actually are. Never, and I repeat, never eat your favorite food before a colonoscopy prep and, no matter how drugged up you are afterward, you still hate In-N-Out Burger.

And get used to people looking at your butt. Not like “Dang, those jeans look good”… more of “When did that hemorrhoid appear?” You’re going to get really used to your rear end being the piece of you everyone wants to see/scope/talk about. You’ll become shameless real quick and poop jokes suddenly become the funniest thing in the world.The author, Becki Parker.

You’ll meet more members of the medical profession than you’ll be able to remember. They all have different methods, but their goal should be the same: to help you heal and function to the best of your ability. You’ll meet nurses that love you and some that you wish took a different career path. If you feel like you’re being mistreated or your needs are not being met, leave. Now. Do your own research and interview a new doctor. Learn new adjectives for how your guts hurt. This will help doctors and nurses greatly. If something looks or feels off, tell someone. Go to the ER. Who cares if they saw you last week? It’s perfectly okay to go back and ask for help. Roughing it out does nothing but harm. The nurses will learn your name and your life story, and they’ll become some of your closest confidants. They’ll be able to help the doctors track how your disease is progressing. Even the doctors will become your close friends and visit you during your many hospital stays. Remember to be kind to these brave souls that not only work crazy hours, but put up with many cranky and sick people, all with a smile on their faces.

Get used to the taste of broth. And stop being a snob about Jell-O. Just suck it up and drink the damn food. Liquid diets are here to stay — deal with it. You won’t like many of the tests, foods, needles or being cooped up, but that’s life now.

You’ll see people you thought were your friends disappear. You’ll try and try to keep those relationships alive, but sometimes you have to learn when you stop CPR and call it. You’re 21 and you’ve little to nothing in common with them anymore. And that’s just fine. And if you have to cancel plans, that’s OK too. Don’t push yourself; if you do, you’ll pay the price later.

It’s normal to outgrow people. It’s normal for them to not understand or learn with you. Adapt to your situation and respectfully move on. Learn to adapt to your ever-changing scenario quickly. It’s no use fighting change. You’re never going to be “normal” or like the old you again.

And that’s the bright side of this whole journey. You’re changing, you’re “abnormal.” The majority of people will never know what you’ve learned. They’ll never have the strength and courage you have. You’re growing into this strong, intelligent fighter. Every day you strap on your boxing gloves and step into the ring with an opponent that never tires or weakens. That kind of endurance is admired far and wide. Your new independence allows you to be strong enough to do things on your own and take control of your life. You’re going to laugh more than you ever have. You’re going to appreciate things more than you ever have.

Some days you’ll wear the pain and fear like the rarest of gems. But some days, you’ll wear them like a “Warning: Toxic” sign. Either way, that’s a-OK. You’re allowed to have rough days, and you’re going to have rough days. There are going to be days that you don’t think you’ll make it through. There will be days you don’t want to make it through. But you will. And you will be a better you for it. Your friends will be truer, your love deeper, and your compassion stronger. These are things people would kill for. Be proud of them.

Like I said, this is going to be the craziest ride of your life. But we’ll make it through. You’ve got this, kid. Don’t ever doubt that.

Sincerely,

The 2016 badass Crohn’s warrior Becki

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. Check out our Submit a Story page for more about our submission guidelines.

doctor talking with female patient in doctors office.

The Struggle of Finding a Great Doctor If You Don't Know Where to Look


If only there were a magical formula to find the right doctor for every patient! Much like slogging through the dating scene to find love, cutting through all the bad doctors to get to the good one is a struggle.

Looking back, there had been signs of Crohn’s disease in my life since I was a kid, but it wasn’t until I was finishing up my sophomore year of college that I knew something was really wrong. I was diagnosed in fall of my junior year and when I was told by my childhood pediatrician that I needed to find a gastroenterologist (GI), I simply called the first guy that showed up on Google. What a mistake.

In my defense, I was not feeling well and my metal shape was weakened by my condition. I was tired all the time and just not as cognitively sharp as I had been, so I didn’t put in the effort to find a good doctor, look up reviews online or take the time to call around and compare different GIs.

I paid dearly for my laziness and his ineptness. I got very sick, very quickly. When I came home for Christmas it was clear to my family that my doctor’s methods were not working, as I had lost 30 pounds in three months and was sleeping upwards of 16 hours a day. I was in no shape to do my homework on a new GI, but I lucked into the best care I could have asked for.

My new GI was thorough, caring, thorough and thorough. Where my previous GI had fallen short, she came through in every way. At this point, my intestine was 90 percent blocked, I had an abscess the size of a fruit and I had developed a fistula, so my only option to heal was surgery.

Losing control of my health to that extreme was a wake-up call, and since then I’ve taken a much more proactive stance on my health. It’s easy to believe that doctors are all good people with good intentions who care about their patients’ health. While I believe that’s true for the most part, I’ve learned the hard way that the only person who is going to make sure I’m getting the attention I need is me.

But ugh! That is so freakin’ hard to do! I don’t know about the rest of you, but I have a degree in broadcast journalism, which didn’t require me to take many classes on autoimmune disease (I believe the grand total of science classes I took in college is none). It’s hard to advocate or defend myself when I don’t know the ins and outs of what I’m advocating for or defending against. The good news is that I am fully prepared to stand in front of a camera and report on it after the fact.

So I lucked into finding a great GI, and when I graduated college I moved 30 miles away, a still doable if not desirable distance to cross for appointments. But the thing is, my body isn’t composed entirely of intestines (thank God) so I need doctors other than GIs to help take care of me. In my ideal world, I have a team of doctors who communicate amongst each other to ensure that I am healthy. Autoimmune disease is a b**** in that if I’ve got one, I’m probably going to get a few more. So that means finding doctors I trust in every facet of my health: primary care, GI, OB/GYN, dentist, rheumatologist, therapist, etc. But where do I even begin in making sure I’m getting the best health care when I’m not a health professional? In my amateur experience, there are two places to begin: word of mouth and the internet.

When I moved up to Los Angeles, I talked to some friends about their doctors and how they feel about them. This is a great way to get started. It opened my eyes to the different medical groups, practices and hospitals in my new home. The trick is finding doctors that are in my insurance network. Big thanks to the Affordable Care Act and a job with health benefits for keeping me insured.

Insurance companies make it very easy for me to find doctors that are in-network online. I can even enter a radius in which to search for doctors so I don’t have to drive too far. Since I moved up to LA this has been the primary way I begin my research for new doctors. It helps narrow down the field to my specific insurance, and from there I go to good old Google for reviews on each doctor. Nowadays Yelp is good for more than just assigning stars to the Thai takeout around the corner. Many doctors and practices appear there, and I find it’s a good way to gauge other people’s experience, while taking them with a grain of salt. There are other medically centered websites that focus on reviewing doctors, but I’ve found that fewer people take the time to rate on those sites.

From there, just jump in. It’s impossible to know what chemistry exists until you and your doctor meet in person. Of course, hopefully there’s not too much of a spark since you’re looking for a healthcare professional, but hey! If there’s more there, good on you for landing a doctor. If I’ve learned anything from “Grey’s Anatomy” they’re probably very smart, good-looking and prone to drama.

It’s taken me almost four years to reach a point where I am satisfied overall with my healthcare. I have definitely stuck with some doctors too long (I’m looking at you, old dentist!), but at the end of the day, after all the research and Yelp reviews, you just have to try the doctor out for yourself. Sometimes the care I received seemed good enough at the time, and it wasn’t until I went to someone new that I realized what I was missing out on. As my mom said, “Now that you’re happy with your doctors, it’s time to move and find new ones.”

P.S. I don’t suggest looking for doctors from your balcony. It will be a very slow route to finding the health care you need.

Follow this journey on Cool With Crohn’s.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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The Tiny Accomplishments We Should Celebrate in Our Lives With Chronic Illness


For many with chronic illness, our lives change drastically before we even receive a proper diagnosis of our disease. It took about seven years from the onset of symptoms to diagnosis for me. By the time I was properly diagnosed, life involved moving between my bed, my sofa, and my bathroom. I ate processed convenience foods, never exercised, felt depressed and frustrated, and spent the bulk of my life in front of a television set. I was a lump of pain and sorrow.

Recovering from a lump of pain and sorrow to find some humanity and function isn’t an overnight transition. Many people misunderstand diagnosis and the start of treatment for chronic illness. They think diagnosis and treatment will make me well. But that isn’t the case. It is called “chronic” for a reason. It does not go away. It keeps affecting me. I don’t get “better.” Wellness can come and go like the tides. It is an elusive and complex concept for those of us who cope with chronic conditions.

I have multiple co-occurring conditions. And the most affecting of those are fibromyalgia and complex post-traumatic stress disorder. I work constantly to achieve the greatest possible wellness despite these conditions. But neither of them are going to simply go away or be healed.

And because my illness will never go away, the lump of pain and sorrow is a tempting state to remain in full-time. I believe all of us with chronic pain and mental illness would be totally and completely justified if we chose to be the lump of pain and sorrow for the rest of our existence, because these conditions can be terrible, life-altering and incurable. We could just keep living on in this painful, psychologically affecting state — indefinitely.

So, it becomes easy for some to focus on what you cannot do. I cannot clean my house alone. I cannot vacation. I cannot go dancing. I cannot work. I cannot pay for things. I cannot cope with various aspects of life. I cannot, cannot and cannot.

list of accomplishments and pen
Christy’s schedule of accomplishments.

But I believe the way to wellness is not through the “cannot.”

The way to wellness lies in the celebration of even the tiniest of accomplishments.

About two years ago, I was constantly struggling with the fact that I could never finish my “to do” list for the day. I did not have enough energy. I couldn’t sustain projects until their end. I couldn’t move. I couldn’t think. I was overwhelmed by the need to nap. So, to alleviate some of the “beating myself up” that the list was inspiring, my therapist suggested I pick only two or three things to do each day.  And that gave birth to the “big three.”

The big three were written down on a dry erase board — three tasks per day. And they started out as the most simple of tasks. “Shower.” “Dishes.”  “Pay bills.” I would cross off the three items as they were completed. And every time I crossed one off, I would have a miniature moment of celebration. (“Woohoo! I showered!”) I used this process for over a year before graduating to what I use now, which is an expanded version of the same concept, and now contains eight spaces (three of them filled with meals to achieve more balanced eating).

The other day, as I was shifting some stuff around in my office, I discovered the big three template, and I realized that I had moved past that marker of success naturally, on my own, as I began to find greater wellness. I got off of the sofa slowly and methodically, with celebrations of each and every accomplishment — no matter how small they might seem.

I now celebrate all the tiny things in my new eight-spaces-per-day calendar. I still celebrate showering. I celebrate eating, napping, cleaning and even watching “Game of Thrones.” Because they fill a space in the plan for the day, I celebrate them as amazing accomplishments.

Managing my life in microscopic accomplishments helps me feel like I am getting somewhere in life. And a side effect of that feeling is that it starts to offer me encouragement, faith in myself and in my body, and the hope that a tomorrow I can be proud of is just over the horizon. Celebrating the smallest of accomplishments gives me joy. And joy is a catalyst for more joy.

Christy Bloemendaal after shower
Christy after accomplishing a shower.

Allowing myself to celebrate mundane tasks — ones that healthy people may take for granted every day  — allowed me to tackle increasing my wellness in very small increments. And it helped me look at the positive side of things, instead of always dwelling on the negative. It made me take pride in my ability, instead of feeling the shame and stigma of what I wasn’t able to do.

Today’s list includes breakfast, food prep, lunch, writing, dinner and the aforementioned watching of “Game of Thrones.” And while that list might seem silly or inconsequential to some, it is huge for me.

It is an amazing transformation to behold when you compare my early big three to today’s list. And it is even greater when I see that every single item on that list is meant to make me even better, if possible.  Naps and yoga and meditation and doctor appointments and swims all get put on the list. Because those are tasks that improve my life and increase my wellness and make me even more able and more joyful.  And I celebrate each one of those tasks. (“Woohoo! I made waffles and went to the rheumatologist!”)

So, if you have chronic illness, try celebrating all of the miniscule tasks you can. Woohoo! You brushed your teeth! Woohoo! You left your bed! Woohoo! You walked to the mailbox! Put all the thought and energy you are able into joy over the little ways you are tackling life. And if you love someone with chronic illness, support them in that celebration. Tell them how amazing they are, even when they accomplish nothing of (seeming) consequence. Celebrate with them!

Think of the ways you might treat a toddler. We cheer when they take a step or share a toy. And that is the type of unbridled enthusiasm that I put toward my list for the day.

Doing so has helped me gain wellness. And there is no guarantee that I will remain as well as I am today. My situation could change in an instant. Then I will go back to a “big three” list, or even a “Woohoo! You got out of bed!” celebration. Because I know the only way to cope with the illnesses that plague me is to keep fighting for the smallest achievements and keep looking toward positivity and hope.

Celebrating all the little things makes that coping possible.

So throw yourself a party (on the sofa, in your pajamas, alone or with a BYO-Everything-and-clean-some-stuff-while-you-are-here invite). Celebrate all the things you can accomplish, and toss aside any thoughts of what you cannot. And keep on doing that — indefinitely.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

Real People. Real Stories.

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