Unfortunately, the medication change has had almost no effect on my physical state. I'm still in severe pain, all over, with no relief. I suffer from muscle weakness and loss of balance, and I have truncal titubation tremors whenever I exert myself much more than I am now (and right now, I'm almost on bed rest). I need naps, like, a lot.
It's something. It means that I can finally make some progress with my writing again. But it's not the miracle I'm looking for. It's not enough for me to have a life again.
This past week, my interstitial cystitis also decided to flare up yet again, making it almost impossible for me to get the sleep I so desperately need. Not only can I not wear pants right now, I can't wear underwear either. I spend all day with my heating pad on. Even then, my bladder is like a never-ending siren shrieking inside of me. I decided to try a bladder instillation, where they put medication into your bladder while you're awake (as opposed to a hydrodistention, where they also stretch your bladder as far as they can, a process so painful it must be done under anesthesia). It helped for a few hours, and then my pain became even worse. I'm still waiting for it to settle. I hope that it does.
I'm also now dealing with the Specific Carbohydrate Diet on top of the already very strict IC Diet, for two weeks while I take an antibiotic to help with my IBS. I am ridiculous hungry, and I really hope it's worth it.
And so the fight goes on.
It's pretty hard to find a happy way to describe constant, all-over-body pain that cannot be cured and will never go away--and that was when I was fifteen. I didn't have interstitial cystitis yet. I didn't have tremors. I didn't need a cane. I was able to attend school and church and write and play cello and do basic chores and even have a social life. My pain and fatigue levels were significantly lower. In basis, my condition was much better than it is now. But no matter how bad the symptoms are, chronic pain is always horrific.
So I decided that even if I couldn't make "happiness" out of the fibromyalgia, at least I could refrain from seeing my body as the enemy. I could think of our relationship as something besides a fight. And that would be better, right? That's how I came up with "Bodiline". Most of you are familiar with "Codi", the inspiration for my novel COCA--Bodiline is a similar concept. I created a "person" to represent my sick body and in that way was better able to manage all the pain signals and similar messages coming into my brain.
However, unlike Codi, Bodiline was weak and young. Because I was determined not to make it a fight, I envisioned my body as a sick little girl, desperate and helpless, who I was dragging along behind me. Every so often, I had to stop to take care of her. I tried to make it a duty, not a burden. After all, who's gonna get mad at a helpless child? I tried to see myself as a mother in this relationship.
I got it wrong. I got it so, so wrong.
In part because I saw Bodiline as a weak child, I had no reservations about pushing her as much as possible. Between that and the difficulty of interpreting the messages from a body that's constantly sending false warnings, I became used to ignoring symptoms up until they became so severe I had no choice but to listen. I've talked about this before in my posts about chronic illness, but it wasn't until recently that I realized how bad it had become.
Looking back now on the past three years, the years in which my interstitial cystitis was slowly developing, I can see now that I was also getting steadily sicker. There were warnings signs--oh man, were there a lot of warning signs. If I had recognized them, perhaps it wouldn't have gotten to this point. If I had realized that I was pushing myself too hard, perhaps I could have found a way to adjust and re-prioritize the most important parts of my life, instead of "dragging" Bodiline along until I ended up losing everything to my illness.
Basically, I pushed my body to this point. I'm not sure of all the details--there's still the possibility that I'm missing a diagnosis or two--but if I hadn't ignored all the signs, I, at the least, would have gotten proper treatment sooner. Before it got to this point. It's also quite likely that I pushed myself into an extended flare simply by overworking myself.
But the good news is that, in becoming so sick that I have to face it, I've gotten the chance to learn. I can recognize now many of the warnings signs that cropped up as I became sicker and sicker: increased nap-taking, skipping church and classes, doing basic chores even less than once every other week, constantly ordering out instead of cooking , and even writer's block. Yes, as it turns out, the writer's block I struggled so much with when it came to writing and editing COCA was actually a huge red flag saying, "YOU NEED TO SLOW DOWN." I so rarely have writer's block that I didn't know how to interpret it. Now I know.
I've also realized that I had an entirely false perception of my own body. "Bodiline" is not the truth, and she's not a healthy way of approaching my illness. "Bodiline" is denial. My body isn't a dependent, suffering child. My body is an aggressive roommate, and she will punch me in the face if I push her too far. Unfortunately, I'm stuck with her for life, and I have to compromise with her, even though it means losing a lot of what I want to have and be. If I don't compromise, she'll take everything from me anyway. That's exactly what happened this year.
It's still strange to me to think that disliking my own body is actually healthier than my previous way of thinking. But that's the way of things. I've always gotten mad at people who use optimism and positive thinking as a substitute for facing the truth. I've spent so much time arguing that smiling at a problem won't make it go away. But that's exactly what I tried to do. "Bodiline" was denial. "Bodi" is acceptance.
So I'm changing my ways. I'm learning to temper myself. I'm throwing away my old rule book and writing a new one. Hopefully, in the process, I can become well enough to go after my most important goals again--with "becoming an author" at the top of the list. I look forward to that day.
Images via gifhunteress on Tumblr and ar15.com.