Today, it's time for something more serious. I've thought for a while that, since it's one of my causes and so vastly misunderstood, I should share my story about living with fibromyalgia. I hope it will help more people understand what we fibromyalgics face. Keep in mind that the condition has a whole slew of symptoms and causes, which means that its sufferers have different experiences. This one is mine.
*Editor's Note 11/28/16: Additional context can be found in this later post, written after I was further diagnosed with OCD. For even more information about my experience with chronic illness, click here.*
We can ignore that I've always been clumsy and ill at ease in my body--that's true for many people. More significant is how long it took for me to learn to crawl. When I did start crawling, I did so primarily on my knees, not my hands and knees. My mom called it "the Kira shuffle." Even after I learned to walk, I preferred to move in that way. When I did walk, I put all my weight on the balls of my feet. I walked on my toes all the way until sixth grade, when I taught myself to walk normally due to social pressure. And all of that because walking in a regular fashion caused sharp pains in my heels.
Interestingly, my great-grandma on my mom's side also hated to have people touch her hair, though she never had fibromyalgia. Maybe she had the gene. Or maybe not. Who is there to know?
I was an anxious, moody child. My ballet teacher informed my mom that I was "the only three-year-old who PMSed." As I grew older, and as my youngest brother went into the diagnostic process that would lead us to autism, my mom realized there might be something strange about me too. We thought then, around my sixth grade year, that it was sensory integration disorder. We theorized that that me and my brother had different versions of it. It would explain my moods, my brief but terrible stint of melissophobia in fourth grade, my clumsiness, my persistently awful handwriting, my strange walking habits, and the fact that I couldn't stand to wear regular jeans. It even fit with the semi-constant headache that I had suffered from since the melissophobia.
Back when I was in elementary school, I realized that I had trouble breathing while running. Trying to participate in active-type sports caused sharp, unmanageable pain in my chest. Despite a lack of diagnostic evidence, my doctor decided I had exercise-induced asthma and excused me from such activities. In middle school, however, they required me to use an inhaler and participate in P.E--and the inhaler didn't work.
Halfway through my eighth grade year, my youngest brother got his autism diagnosis, and I got a new one, too: vocal cord dysfunction, a little-known breathing disorder where the vocal chords constrict in stress or exercise. Since my throat and chest both hurt when running, that seemed right. I was excused from strenuous activity in P.E. after that.
The next year or so went by without any new physical issue. I will mention that, from the moment they began, I had severe problems with my periods. Most notably, my cramps would, perhaps a fourth of the time, become so bad that I ended up on the floor screaming and throwing up. It's the worst pain I've ever felt, the worst I can imagine, far past the reach of rational thought.
Sometimes, fibromyalgia is set off by an illness.
When I was in tenth grade, the swine flu pandemic happened. I remember people had two different reactions: either it was the end of the world or a ridiculous thing to worry about. I was more on the latter side. Then I woke up, Halloween morning, sick--my hips and head hurt badly, and I was coughing. I mentioned that I spent a lot of time trying to compensate for my lack of normalness. On this Halloween, I decided that a normal teenager would go to their friend's party despite their illness because normal teenagers aren't responsible. Ironic, the extreme consequences of that moment.
When my friends and I went outside to check out the decorations down the street, I went into a coughing fit. I almost choked, and my friends had to rush me back inside. I went home, telling my mom I felt sick. I had an 101 degree fever. The next morning, Sunday, I stayed home from church, incredibly sore and ill, and fell asleep. When Mom came back, I had a 103 degree fever.
For the next two weeks, I was in and out of school as my fever came and went. After I'd relapsed pretty badly, with a horrible cough, I forced Mom to take me to the Urgent Care, where I was diagnosed with H1N1 (swine flu) and bronchitis. They put on a nebulizer for a while. I got better... until I woke up at three AM on a Thursday morning with piercing pain in my left ear. We went to the Emergency Room, where I was told that I had relapsed again. A couple days later we went to my regular doctor, and she told me that, in fact, I now had strep throat.
Eventually, I stopped being sick. Except for one thing: my hips wouldn't stop hurting. I'd wake up in the middle of the night, in too much pain to even scream, feeling as if a burning sword had been thrust into my hip. I'd immediately flip over, and lay shaking for a while. It kept getting worse, even moving into my left knee. I was losing sleep and becoming more stressed during the day. Finally, in March, after an orchestra performance that landed me in tears, I told Mom we needed to see the doctor because this wasn't okay. Just after my sixteenth birthday, I went to the doctor, and was diagnosed with reactive arthritis, a temporary form of arthritis set off by a virus or bacteria. It was supposed to go away by June.
The pain lasted through the summer, but I stayed hopeful. Then I started eleventh grade.
On the first day, as the stress from the start of a chaotic new school hit me, I became very, very sick. The pain I had been suffering in my hips and knee expanded out across my torso and down my legs. That night, I couldn't sleep from the pain. I could only cry. And it didn't get better. Through the week, the pain spread, up my face, through my fingers, into my chest. It terrified me.
This wasn't reactive arthritis. What was it? If it was real arthritis, I might never be able to do the things I loved again. I might have to quit cello.
We made another doctor appointment, as I suffered through my transition into full-blown fibromyalgia. I hurt all over, all the time. I felt distant from everyone else. I was too tired to move. As a natural result, I was really emotional. That was the hardest part. No one understood how much pain and stress I was under. They thought I was freaking out for no good reason. But it was all I could do to make it through the day.
When we got to my doctor, we realized I was in trouble. She didn't know what it could be. So we started what would end up being a half a year of blood tests and x-rays and potential diagnoses. I was lucky. The average fibromyalgic at the time spent something like seven years trying to get diagnosed. Yet it was difficult waiting for the results to come back only to find nothing--I didn't have arthritis, or a common blood problem. My bones looked fine. We went back again--did I have leukemia? No, thank goodness, though not knowing almost seemed worse right then.
Meanwhile, the weather was getting colder, and it was becoming very clear that I was now extremely sensitive to it. It was only early October, I was having to go to bed at nine every night. I never had a moment without pain--and the kinds of pain! You don't understand how many kinds of pain there are until you've had a condition like this. There aren't even words for most of them. The pain is everywhere and in all kinds of ways and at all kinds of levels.
Negative result after negative result. My thyroid was fine. My chest was fine. My blood was fine. Everything was fine. Except for it wasn't.
Finally, I chose to look at something my doctor had mentioned, but passed by because I'd thought that my pain was only in my joints--this weird, scary word, "fibromyalgia." My pain wasn't all in my joints, I was realizing. My ribs hurt too. And my head. And the middle of my shin. As I researched fibromyalgia symptoms, things started to, horrifyingly, amazingly, click. Pain for more than six months, all over the body. Fatigue for more than six months. Sensitivity to cold. Upset stomach. Confusion. Emotional instability. Clumsiness. All of that, and no positive test results to show the physical happenings that caused this agony.
Often in fibromyalgia, there are 18 "tender points," quarter-sized areas in specific places of the body, which hurt with only the slightest application of pressure. At the time of my diagnosis, you had to have 11 of these to be diagnosed, along with an appropriate combination of other symptoms. In the end, I had 15 of the tender points. I had fibromyalgia.
It's hard to explain the mix of feelings that came with my diagnosis. At first, I was incredible ecstatic, because finally I had a real answer, something I could tell people when I felt sick, something to explain my problem. But then came the shock and grief, leaving me a confused mess of laughter and tears.
Fibromyalgia has no cure. All you can do is manage the symptoms, and only by a complex and potentially dangerous combination of treatments. To this day, no one really understands the disorder, although it's clear that the entire nervous system in a fibromyalgic is turned up far too much due to a strange combination of chemical imbalances. Even for those who manage the disorder, an incredible amount of sacrifice is required.
Grieving isn't just for the death of a loved one. It's also for the death of possibility, and for the next few months, it felt like every possibility had died. Every day, I'd think of ten more things I'd never be able to do. Ski. Give birth. Play basketball. Rock climb. Ride a bike. My relationships with others, in that instant, shifted dramatically. They say in relationships with fibromyalgics, there are three entities--the fibromyalgic, the other person, and the fibromyalgia itself. I believe it. Most of the time, it feels like my body is a whole other person, weak and yet incredibly demanding, a parasite and a victim, whose needs I am constantly obligated to meet.
I had to deal with the transition between my previous life and a life in which I had to constantly consider my body. I had to stick to strict limitations in order to preserve my highly limited energy for the things that mattered, and I had to prioritize everything. School and church came before friends, writing before music, sleep before anything else. (Sleep is a key need in fibromyalgics, due to a chemical imbalance in the brain that constantly interrupts our Stage 4 sleep, with Stage 4 being the deepest level and the one in which body restoration occurs.) I also could no longer do anything significantly physical. Even standing or walking for more than a few minutes hurt badly. Always, always, I felt sick and confused. It was like standing in a glass box. I couldn't quite reach out, no one else could quite get in, and in the meanwhile, I was suffering.
It was a long up-and-down slope, but after a while, I got through the grieving. The turning point came when I decided to fight. After all this awfulness, there were a few key decisions I had to make. I had to choose--would I quit school? Go on half time? Quit cello? Quit my morning church? All things that could be done, none things I wanted to do. But as I agonized over the choice, three people came with the exact things I needed.
The first was my best friend, who said the words I'd wanted to hear--that this situation was really tough, that she didn't think she could have lived with it, that I was really strong. (This often isn't what people with chronic illnesses want to hear--it can become upsetting when we're struggling to fight our way through and live our lives. That kind of rhetoric comes close to the viciously ableist idea that those who are sick ought to die. But at the initial grieving point, and from my loving best of friends, it was perfect for me.) Then my Government teacher stepped in during the middle of a fire drill to tell me that he was there to help, and that he thought I'd be able to figure out where my limits were. Finally, in orchestra, I lost it because the concert was the next day, and I messed up, and I didn't want to face the fact that I might be unable to play anymore. As I huddled in a corner crying, my standpartner came. He didn't say anything, he just gave me a hug. After that, I knew that I couldn't give up. I couldn't let go of orchestra. I couldn't let go of school. I had to fight, because I could, and because I was loved.
By the end of eleventh grade, I finally got into a routine I could manage, and things improved. I began to almost forget what it was like to not be disabled, which is a good place to be for those of us who are. There were still struggles, though. I'm one of the unlucky third of fibromyalgia patients whose condition worsens over time. As such, I came back senior year, twelfth grade, for registration and immediately realized I wouldn't be able to go to school the way I was now.
So Mom let me take the leap and try antidepressants (one of the few medications designed to correct any of the neurological imbalances in fibromyalgia), despite her major concerns about the dangers of use in teen. And they worked! Marvelously. It felt like a miracle. For the first time, I didn't feel sick. I was still tired and sore. I still had to take really good care of myself. But it was like waking up after two years of sleep and realizing I could be a part of the world again.
The medication didn't have any adverse effects for me either, which is a huge bonus. So I managed to get through high school, and now I'm in college, living it out.
It's still not easy. I'm still disabled, and I still have to take really good care of myself or risk severe sickness. And people still don't understand. But I'm okay for now. I'm used to it. The fact is, when your body is your worst enemy, you can't do anything without first taking care of it. You also have to hold onto the strength that lets you keep fighting. It's a difficult balance, but one you learn to keep.
Come back Wednesday for another post--a bit of humor to lighten things back up.
Images via krasgmu.net, Wikipedia, Leonard Smith on Pinterest, butyoudontlooksick.com, and The Huffington Post.