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What It Means to 'Make It Through the Day' With Fibromyalgia

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“I made it through another day.” It’s what I say to myself every night before I go to bed. Sometimes when I say it I’m thoroughly exhausted, others not so much. I know when I finally fall asleep, it won’t be for long. I have a long night ahead of me, and all I can do is push through it.

Every morning begins the same way — with pain. Before my husband gets out of bed, sometimes before the sun is up and the birds start chirping outside my window, there’s the pain. It’s heavy, and it weighs me down. On a good day I just ache, but on a bad day I feel like I have arthritis. Every joint throbs and curses me with every movement. It is unrelenting; it wants to break me and it wants to defeat me, but I won’t let it.

For awhile, I lived in denial that I had fibromyalgia. It seemed like a throwaway diagnosis. I urged my doctor to do more tests, convinced that I must have some other condition. I was convinced she was wrong. It wasn’t until I had my first flare-up that I had to believe the truth. I have fibromyalgia, and this is going to be my life.

My husband and I were in Ocean City, New Jersey enjoying a walk down the boardwalk. It was April, and there was still a chill in the air. The cold seemed to go right through me and no matter what I tried I just couldn’t get warm. I persevered; I wanted us to have a great time and enjoy our kid free weekend together. I pushed myself too far and by dinnertime my symptoms were progressively getting worse. The first thing that went was my appetite. I was so nauseous that the thought of any food disgusted me. I forced myself to eat a little and made excuses as to why I wasn’t eating. That night I couldn’t sleep — my entire body vibrated with pain and nothing made it go away.

When we returned I knew something had to give; I was tired of living this way. My kids have gotten used to the fact that Mommy can’t do everything. They’ve witnessed me too many times on the couch, curled up in a ball in tears because I can’t make the pain go away. They help me as much as they can and sometimes do more than they should. I’m their mother; I should be able to take them for a walk or chase them around the park or swim with them without feeling like I have been hit by a Mack Truck the next day. This is what makes me angry; this is what makes me fight with every ounce of strength I have because this is not the life I wanted, but it’s the life I have.

I used to be the mom who took her kids for hikes in the woods; we rode bikes, went swimming and we played sports. We were a very active family. I have twin sons who run around the house wreaking havoc and want to me chase them. Some days I can — I let the chores fall by the wayside and the kids and I spend the day running around like we used to do. We may not have clean clothes tomorrow, but we had fun today. Every day is a choice between what I have to do and what I want to do. I know I can’t do it all — those days are long gone.

Now I track everything I do and everything I eat. I take a host of supplements and pills that only take the edge off the pain. I have to come to terms with the fact that I will never have another pain-free day again. In fact, I’ve lived with this for so long that I don’t remember what it feels like not to have pain, and that scares me. It terrifies me that one day I might get to the point where I can’t stand it anymore. I have had those days where the pain is just too much, where I’m screaming on the inside, “Please God make it stop.” Then I stand back up; I push myself a little more because I have a family that needs me. I will never give up. I will never stop.

When I finally climb back into bed that night, I say to myself, “You did it, you made it through another day.”

Follow this journey on Scattered Wrecks.

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The 2 Tim Burton Characters That Help Me Cope With My Pain

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One of the biggest challenges of my life was growing up with fibromyalgia. The pain affected every aspect of my life. Most of my grade school years were spent in medical offices, and homeschooling. When I was able to be at school, I was happy to be around people my own age, but being out of the social loop, I struggled to maintain peer friendships.

My 6th grade teacher also has fibromyalgia. She knew how difficult it could be. Not only did she helped me to feel a part of the class, but she also introduced me to “The Nightmare Before Christmas” at the class holiday party. Little did she know how much that film and Tim Burton’s other film, “Corpse Bride,” would impact, inspire and comfort me for the rest of my life.

“The Nightmare Before Christmas”

I was captivated by the film’s music, imagery and Sally. Sally, the leading lady, is a living rag doll from Halloween Town. She was the first film character I could completely relate to. I saw Sally as shy, smart, caring and willing to go against the grain. More than anything, she wanted to be a part of life. But, being a rag doll, Sally had physical challenges, just like me. Sally did not have a steady walk, would often fall apart and limited who she interacted with.

Living with fibromyalgia, I have suffered from chronic joint pain that affects my walking. During times of severe pain, I could only walk with the help of braces and walk aids, like canes and walkers. At times I had to use a wheelchair. The severe pain was so devastating, it made me felt like I was falling apart. But every time Sally fell apart, she always managed to either sew herself up or had her creator, Dr. Finkelstein, sew her up.

Dr. Finkelstein is Sally’s overprotective father figure. He tries to shelter Sally from the world, but by keeping her under lock in key. His overbearing behavior makes Sally resentful. My life seemed to parallel with Sally’s. Being a pre-teen with fibromyalgia, I was beginning my teenage rebellion. I also viewed my parents as being overprotective and overbearing. But what I didn’t take into consideration was Mom’s experience. She also has back problems as a result of multiple accidents throughout her life. She was just trying to protect me so I wouldn’t suffer more.

The most important lesson Sally taught me was that her physical limitations led to other abilities.  Through Sally’s determination to help those she cared for, including her love interest, Jack Skellington, she didn’t let her physical limitations hold her back. In fact, Sally used her unique knowledge gathered from her experiences to do a variety of things, including being Jack’s voice of reason, sewing, using herbs, and detaching her limbs to save Santa Claus.

“Corpse Bride”

At 16 years old, I was suffering from oropharyngeal dysphagia. Oropharyngeal dysphagia is the inability to swallow solid food and pass it into the esophagus. With my health rapidly deteriorating, doctors gave me six months to live. I was a filled with so many emotions, from resentful to sad to scared. With each passing day, I could feel my body shutting down. I felt there was nothing I could do but wait and die.

In the film, Emily, who is the corpse bride, was a murder victim. She was resentful, from being murdered, and also hoped her “one true love” would marry her and set her free from her suffering. Through her love for Victor, the male lead, Emily learned that only she could set herself free. She had to let go of her resentment and accept the reality that certain dreams could never come true.

Most of my resentment came from the doctors, who hurt me more than they helped me. I also had to acknowledge that because of my fibromyalgia, there were dreams I had to let go of. As much as I wanted to serve in the Air Force, be a Drug Enforcement Administration agent and continue dancing ballet, I couldn’t. By letting go of those dreams, I was freed for to create more fulfilling dreams. Now, I have a passion for writing, history, music, film and sociology. With all the joy and knowledge these passions have given me, I can’t imagine my life without them.

At 16, I was afraid to die. But Emily and the land of the dead helped comfort my fear. They showed me how people are so afraid of dying, they only start to live when they’re dead. Although I am not afraid of death or of facing a life with physical limitations, at the same time I do feel overwhelmed. But with heroines like Sally and Emily, who continue to inspire me, I keep fighting.

The Mighty is asking the following: Describe a scene or line from a movie, show, or song that’s stuck with you through your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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Woman With Invisible Illnesses's Disability Claim Was Denied Because of Photos She Posted Online

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What does being disabled look like when your chronic condition is an invisible illness?

According to a Tumblr post from Kayla Barry, a New York City-based comedian, if you want your disability to be taken seriously, then you shouldn’t look awake, smiling or alert.

Barry, known on Tumblr as Fibro-larious, shared a series of photos on Wednesday after her request for long-term disability was denied. Barry lives with chronic fatigue syndrome (CFS) and fibromyalgia – conditions that can cause widespread chronic pain and extreme exhaustion.

The post begins with a snapshot of the document she received denying her disability claim. The form asks, “Are the claimant’s self-reported symptoms and complaints consistent with the medical documentation and other information in the claim file regarding the claimant’s activity?”

The answer, pointing to her Twitter profile, states:

The material viewed show photographs and some activities that were posted between 9/8/14 and 7/30/15. There is nothing in the posts that identify actually when the photos were taken. However, the person depicted in most of these posts appears to be a young woman who is engaged in life activities, awake, smiling and alert. They do not appear to depict an individual who looks chronically ill.

Disability Denial

“The physician who was hired to make the decision on my LTD benefit appeal denied me based on “facts” like this one,” Barry writes in her post. Below the form, Barry shares photos of herself “engaged in life activities.”

Kayla Barry

“The few photos that “appear to be a young woman who is engaged in life activities” and “awake, smiling and alert” are FAKE,” she writes. “People always use social media to show the BEST moments from their lives, even if they aren’t the whole truth.”

“They’re called invisible illnesses for a reason,” she says. “People with chronic illnesses can look completely normal. They are hidden in plain sight.”

Barry then points out what she doesn’t share, the toll her invisible illnesses take after she gets to be “happy for a day.”

“I don’t share the three days I have to sleep to recover from one stand-up comedy set. I don’t share the intense pain my body is in after walking around in Central Park for a day.”

Barry updated her Tumblr later in the day to say she is working with a social worker on her disability claim, and has an appointment with a lawyer to discuss her claim.

You can read her full post below:

http://fibro-larious.tumblr.com/post/145948678177/the-physician-who-was-hired-to-make-the-decision

The physician who was hired to make the decision on my LTD benefit appeal denied me based on “facts” like this one. The twitter account he referred to as evidence that I’m lying about my illness is hardly active. Also, the majority of the posts are:

• Photos of pets
• Photos from Timehop (aka from years ago)
• Photos of things around my house

The few photos that “appear to be a young woman who is engaged in life activities” and “awake, smiling and alert” are FAKE. People always use social media to show the BEST moments from their lives, even if they aren’t the whole truth. I’ve had some great experiences in New York, so of course I am going to brag about them! What I don’t share on social media are the consequences of being happy for a day. I don’t share the three days I have to sleep to recover from one stand-up comedy set. I don’t share the intense pain my body is in after walking around in Central Park for a day.

They’re called invisible illnesses for a reason. People with chronic illnesses can look completely normal. They are hidden in plain sight.

The Mighty reached out to Kayla Barry for comment and has yet to hear back. 

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

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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.

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When I Feel Guilty About Discussing My Fibromyalgia Since It Isn't Life-Threatening

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I have fibromyalgia. There’s no doubt about that. And I don’t really care about the naysayers, the people who say it’s not a real disorder, the doctors who say it’s not real.

I know it’s real.

And still, I feel guilty a lot of the time. Too guilty to tell people about it — about having fibromyalgia, an invisible pain condition. Because to me, it’s just not in the same category as other illnesses. Fibromyalgia isn’t fatal. It’s not an ailment that will require lifesaving treatment.

I will likely live to a ripe old age with this illness, this pain, the brain fog and feeling lousy, especially since longevity runs in my family. I don’t believe it will be the fibro that will get me in the end, but something else: a bum ticker, a brain that turns to mush, a strange bump that starts out small — anything but what I have, which is fibro.

And since fibromyalgia isn’t going to kill me, it somehow doesn’t seem right I’d give it airtime. It feels impolite or selfish to even mention it to anyone outside the circle of my family. It feels too small and insignificant to disclose.

So I don’t talk about it. Even when I need to talk about it. Like when my neighbor knocks on the door and for the nth time, I’m in my bathrobe. “Are you sick?” she asks.

“Just lazy,” I say, and watch her barely hide her disapproval from my eyes, she of the treadmill and  power walk, the one who is physically fit.

I don’t tell her how most days I can’t get dressed because it hurts because of the crushing fatigue. Will she think I’m a kvetch, a weirdo, for claiming illness for something that may sound to her like a made-up disease? Will she see me as an utter narcissist to complain when there are people dying of breast cancer and ALS?

Somehow, being thought of as lazy, a slattern, doesn’t seem half so bad or selfish. Like I’m trying to steal sympathy away from the people who are dying from what they have, while I simply don’t feel well enough to get dressed today or most days.

And then there is work. I work hard at what I do. I believe in the mission of my workplace. But I confess I  fear telling my co-workers at Kars4Kids, where everything is about the kids, about my mostly adult aches and pains. How would this information affect my standing at work where at 55, I am one of the oldest employees?

Would I be seen as a slacker? On a bad day, if I failed to produce, would I be seen as a slacker? Not a team player? A kvetch?

Worse yet, could I be made redundant, that fancy word for “fired?”

So I say nothing and push myself, even on the worst days. I push so hard I do more than what two or three writers could accomplish in the same timeframe. I test myself, in a weird game of limbo, setting the bar lower each time, to see if I can just squeak in, to see if I can make my body do the impossible and get me through one more day at work.

They never suspect that in the mornings, my feet hurt so bad I cry when I stand on my own two feet, just out of bed for the day. They see me as capable, a work horse. 

My fibromyalgia is nonexistent to them, an invisible shadow they just can’t see.

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

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How I'm Learning to 'Radically Accept' My Life as a Young Adult With Fibromyalgia

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As an alumna of a top 20 university, the pressure to succeed in life is immense. Most of it is self-driven, though as a person with fibromyalgia, I know that I cannot fight to have the same façade of perfectionism and over-achievement as my peers. My chronic pain, fatigue, and other symptoms can stop me in my tracks if I don’t take care of myself. Because of this, throughout my time in college and grad school, I have had to let go of much of my unhealthy drive to achieve and “keep up” with my peers. To be honest, letting go has been one of the biggest reliefs of my entire life. I don’t harm my body and myself in order to triumph like I used to.

Emmie dressed in graduation garb, holding up her university diploma and smiling big
Emmie holding up her university diploma.

I’m learning to radically accept what’s going on with me as I simultaneously radically advocate for myself to get the best medical care possible. Sometimes, that radical acceptance means slowing down or even stopping, which is what I’ve had to do this semester in grad school on medical leave. To say that I was sad to have to take time off, at least at first, would be an understatement. In some ways, I felt like a failure. It felt like all my college peers were out getting incredible knowledge in classes, internships, jobs, service opportunities, and grad school acceptances while I was stuck on my couch for most of each day.

Some of the pressure I feel to succeed is not self-driven, however. Sometimes, it comes in the form of others’ comments, body language, and expectations of what a fruitful college graduate in America looks like. Entirely independent. Unstoppable. Moving up the career, social, or education ladders at lightning paces. I know that they don’t mean to imply that I am lesser because of my body’s differences, but it can sting. I’m just as capable as my peers, but I live in a body that’s smaller than my expansive dreams.

Some of my peers this semester, in efforts to comfort and empathize with me, have told me that I am living the dream, getting to relax while they toil away at work. It feels like a slap in the face every time someone tells me that. It is not a dream to live with a disabling condition that can make you feel insignificant if you don’t give yourself grace, concluding that you’re doing the best you can. Recovery – going through physical therapy, exercising, practicing mindfulness, engaging in individual and group therapy, reading self-help books, journaling, eating healthy, sleeping 9+ hours a night, going to doctor’s appointment after doctor’s appointment (up to 8-10 in a single week, for me), to name just a few activities – is hard work, and that’s not to mention the responsibilities that I still have to do outside of maintaining my health. It is not “relaxing” to have a day off living in my disabled body.

When I went to visit my alma mater this spring (I had some time and figured I’d make lemonade out of lemons!), I went to a meeting of one of my old extracurricular activities. Many of my college friends keep up with my life on my blog and Facebook. However, one of my friends didn’t know that I was taking time off. She came up to me and asked, “How’s grad school and being on your own?! Would you tell me about time and money management?” I was completely shocked. I’ve been living with my mom, barely able to do anything for myself – she even has to open my pill bottles for me because my hands hurt too much. The other friends I was talking with were similarly shocked.

I looked at her and said, “I’ve actually been out on medical leave. My adulthood is looking really different from your image because of my poor health, but I’m making it the best I can. I’m living with my mom, and she has been absolutely amazing. I know that I will do something great with my life, even if I can’t finish a graduate degree, and even if I don’t have good enough health to work part-time or full-time. It’s OK to ask for help. None of us is truly independent anyway.” I then went back to the conversation I was having with the friends who know me better.

There is no shame in accepting your limits; in fact, there’s great peace. You are enough, right now, just as you are.

Emmie smiling, and holding up the palm of her left hand, on which she wrote in black Sharpie in all caps, “I am imperfect & I am enough!”

Follow this journey on Illness to Wellness.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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