*For a follow-up on this post, click here.*
For well over a year, I have been struggling.
Struggling isn't new for me. I developed OCD at the age of eight, which led to BDD at the age of eleven, suicidal ideation at the age of thirteen, and trichotillomania/dermatillomania at the age of seventeen. I wasn't diagnosed, and therefore didn't get treatment, until the age of nineteen. I still have to contend with my OCD, most especially the tricho/derma aspect, daily. My family is a hotbed of mental illness and confusion, and of course, I dealt with the usual amount of bullying and academic pressure and friend issues growing up.
On top of all that, when I was fifteen, on Halloween 2009, I caught H1N1, followed by bronchitis and strep throat. My first symptom, hip pain, never left. In fact, it spread until, by the beginning of my junior year of high school, I'd developed full-blown fibromyalgia. I was, luckily, diagnosed only two and half months later.
It took months for me to get through the inevitable grieving process that comes with the forever loss of a healthy body and the privilege that comes with it. I researched and read and learned all the scary statistics; I figured out my priorities and readjusted my expectations. I finally came to a place of acceptance, and with outside support, an adjusted lifestyle, and antidepressants, I got my fibromyalgia into a manageable place. I've discussed my condition and related experiences here before, so you know all that.
That was four years ago. I thought I was done grieving. I thought I only needed to reach "acceptance" once. I was wrong.
One statistic I read back in the day shows how confused and uncertain information about fibromyalgia is: approximately a third of fibromyalgics, it stated, improve over time, a third remain in the same condition, and a third worsen. I don't know how true that is, but I do know that, from the get go, I have been in the unlucky final group. Though the antidepressants pushed the progression of my condition back a miraculous amount, and continue, I'm sure, to hold nastier symptoms at bay, I am still getting worse. I have still been getting worse.
To be an adult with a chronic illness is, though not as heartbreaking as being a child with one, more of an issue. College showed me that. When you have to prioritize everything because your body has strict energy limits, you tend to cut out a lot of smaller stuff to focus on bigger, high-priority goals. Unfortunately, in adulthood, smaller stuff needs taking care of. Living mostly on my own in a college apartment, I found it all to be quite difficult. Keeping the apartment clean, going shopping, cooking food, all present tremendous challenges for me. Issues of transportation, too, in a small town where "you can walk everywhere," cut me off from most everything but my classes. I made one friend in my entire time at BYU-Idaho, and she was one of my roommates (the best ever, BTW).
As I struggled to keep up with basic responsibilities in a body that keeps hurting more and more and requiring more and more rest and causing more and more trips to urgent care, I became depressed and overwhelmed. My last couple of years at college, I essentially had the energy for two activities: schoolwork and sleeping. I took a multihour nap once a day and still needed at least ten hours of sleep every night. Though I am quite religious and attended a religious college, in these past years, I've managed to attend church, on average, less than once a month.
My first semester as a senior was the worst of all (and makes me all the more grateful for my wondrous roommate). I spent every waking second dying for sleep, I experienced very little happiness, and I lost my ability to complete almost all basic tasks. The kitty litter would go uncleaned for a month at a time. I'd forget to shower multiple days in a row and shaved even more sporadically. I ordered delivery for dinner every night because cooking and shopping were the equivalent of climbing Mt. Everest. Important emails, often for Ch1Con business, went unanswered for weeks. My entire blog queue got posted, and I struggled to keep up with posts ever after. I even dropped, almost entirely, my writing projects. In my life and in my brain, there wasn't room for most anything besides schoolwork.
Halfway through the semester, it was very clear that I had to make lifestyle adjustments again. I had to give up something that, the first time around, I'd fought not to let go of: cello.
After my diagnosis, when I'd had to rearrange my life to maximize my limited energy towards high-priority tasks, I'd mourned so many activities and possibilities that I had to let go of. However, one of my greatest fears was that I'd lose the cello. In that moment, I realized how much orchestra really meant to me, on a deeply emotional level. Thus, despite the physical difficulty of playing cello, I managed to force it into the priority area that made the cut, so to speak.
Now I had to excise it, after only just managing to grab it out of the jaws of my OCD. In a lot of ways, it was the right time to quit. Playing cello no longer has the personal meaning it once did--for the current moment, I've gotten everything out of the experience that's necessary for me--and at least I knew now that I had gained that much control over my OCD. But it was still a wrenching, heartbreaking decision that I made literally on the deadline of the withdrawal period. I was forced into this decision, like so many others, by my own body.
Though I'm no longer at the incredible level of fatigue and confusion that I was before I quit cello, I haven't made any kind of comeback. Since that moment, I have struggled to motivate myself into doing anything, everything. This past semester, each essay I was assigned felt like a fully loaded wagon I had to pull uphill on my bare shoulders. All I want, what I still cannot drag myself away from, is to sit in bed and watch TV. My brain and body continue to reject basic responsibilities, and almost anything I can think of to do seems like an impossible, monumental task.
I've spent years now fighting my own body, ignoring the signals it screams, "pushing through the pain," refusing to "give up" or "give in", "overcoming" like a good little sick girl, "not letting it take control," and I've finally stalled out.
I don't want to do it anymore.
Most people have no idea what it's like, living this way. Every single task, every second, is a battle that drains not just my physical, but my emotional energy. I am engaged in an eternal war with the body I am dependent upon and the fact is, it's not just an uphill battle. It's a losing one. I cannot defeat the fibromyalgia. It will just keep getting worse and taking more and more away from me, even the things that define me most. I don't remember what it's like to not be in pain anymore. I have no idea what it would feel like to just be a person, not a mind-plus-body. I can't even tell when I have an actual injury or illness, because I'm so used to ignoring the pain. All I know now is that every inch of my body at every moment is a burden, and right now, it feels like this mass of flesh that I reside in wants nothing more than to destroy me.
For years, I think, thanks in part to the OCD, I have been driven by the idea of "supposed." I have done so, so many things, dragged this body through invisible coals, because I'm "supposed to." Church, school, jobs, basically leaving the house at all. I am plagued by "supposed," and I know that this is one of the facts of life. Everyone has duties and responsibilities, things they do because they have to. Everyone knows society's mandate to be productive citizens. The problem is, right now, everything is a "supposed" for me. Even the things that I value the most, things I love, like writing and singing, are "supposed"s. Because I am "supposed" to fight it, I am "supposed" to live my life despite it, I am "supposed" to be productive and happy and fine, but "supposed" just isn't good enough anymore. With me living in this body, "supposed" and "have to" and "gotta" are not enough.
I need to want it. I got through this the first time because I wanted it, I can see that now. But I am out of wanting. My one want that I'm still feeling is to read, all the time and all of the books, as usual--but reading is easy. I watch Netflix too, and most the time I don't even want that. It's just easy.
This week, I went to the urgent care for an ingrown toenail. It's been there a long time, I'm pretty sure, but because I can't tell the difference between fibro pain and "real" pain, I didn't really pay that much attention until it became visibly infected. Yesterday, waiting in the office, I told my mom about all of this, and she said that the reason I can't seem to find a "want" that will help me overcome this right now is because it's overshadowed by a much bigger want: I just want to stop feeling awful.
She was 100% right, and I teared up a bit, because it's rare that someone without chronic pain understands. But that's exactly it. I know, somewhere, the shadow of the wants that I've held my whole life, the wants for family and writing and publishing and just life, still exist. But I can't see them anymore past the massive want I have for relief.
I'm not sure how to overcome this. We are looking into new treatment options, and maybe it'll do something, but you learn to be skeptical living like this. It's part of coping with the reality of constant sickness. So I'll be gentle with myself, and I'll hope that my wants can rebalance, so that my want to live is greater than my want for peace, even if my fibromyalgia continues to be awful. Not because I "have to", not because I'm "supposed to", but because those wants still exist somewhere. I know that much.
There is, at least, always new hope for the future, as slowly as it comes. Medical science is beginning to recognize fibromyalgia in more significant ways, and research is expanding to fill in the profound gaps of our knowledge. We know now that fibromyalgia is a neurological, not rhematological, disorder with real, measurable imbalances and physical symptoms. We know that there is actual inflammation evident in the peripheral nerves. We know that genetics play a key part that can lead to better diagnostic testing, and, as of today, a new study on optic nerve fibers showed that fibromyalgia, despite past belief, may be a progressive condition like arthritis or multiple sclerosis.
Although none of this directly points to the much-desired cure, it can only help. I believe in a future, even if it's past my time, where this pain ends. Yesterday, in order to fix the ingrown toenail, the doctor pried the nail edge up from under my skin. In order to do that, he numbed my toe with lidocaine shots. When my toe went numb, I couldn't stop giggling. (My mom asked the doctor if he'd accidentally given me laughing gas.) It felt so strange and wonderful.
Because I can't remember the absence of pain, sometimes I wonder if the pain I feel is actually exactly what everyone else feels, and I'm somehow overreacting to it. This was a nice reminder to the contrary, and on top of that, a really novel sensation for me. I didn't realize it until my toe went numb, but even in the places where I'm not actively hurting, all throughout my body, my nerves hum. That numbed toe was a sudden silence, and I was stunned by it.
The doctor said he'd never heard someone call a numbed part "quiet" before, but that's the best description I have. The hum of my nerves isn't an actual sound, but it feels like sound, and if I were to pick a note, I'd say my body's average tone is a steady droning D. But here, for once, a part of my body was quiet, and for a moment, I could imagine what it would be like to feel that way all over. To have a quiet body would be a miracle to me--to be able to live hearing only myself in here, not also the constant hum and scream of my nervous system. I think it would feel like being invincible.
Even though that reality, for people like me, isn't nearly as simple as a lidocaine shot, I do believe it's possible. I think quiet does exist.
(For the record, the quiet wore off and became a scream, undoubtedly amplified by my very best friend, fibromyalgia. My surgified toe's pain level wasn't the worst I've ever felt, but it was unbearably high on my pain scale. Luckily it's much better today, but holy potato can my body be cruel to me. Why me, it's not fair, etc., etc. Anyway, I love you all, and I'll see you on Tuesday!)
Images via thehealthflash.com, [my own], notensions.blogspot.com, healthylifewho.com, t-nation.com, and booksdirect on Tumblr.
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