As I write this, I’m still debating whether to post it. This blog has sort of become a public diary in a way, expressing thoughts and feelings I wouldn’t dare to say aloud. I don’t typically share my deep feelings. My friends and family all know me really well, and I don’t hide things from them, but there are things I typically would keep between myself and my therapist.
But she’s out of town this week so I guess the Worry Warrior audience will have to do.
I went in for my MRI on Wednesday. I was nervous because I’m claustrophobic and I couldn’t take any antianxiety meds because they make me sleepy and I was driving myself. So, clad in the fabulous paper smock and shorts they provided, and after assuring the technician for the millionth time that yes, I’m sure I’m not pregnant, in I went. And I did really well. I closed my eyes and focused on my breathing, thought about the books I’m currently reading (I say books, but people who know me well know it’s actually fanfiction…), and made it through. I did open my eyes once, simply out of curiosity, but shut them again almost immediately.
Then, once I had put actual pants on, I went down the hall, got bloodwork done, got my flu shot, and picked up my medication refills. All in all, it was a productive morning. By this point I was exhausted because I had been up since 5:30 and I actually had to slap myself in the face a few times to stay alert while driving home. I took a nap, then around noon I made myself lunch and checked my email.
Wow, I thought, pulling up my notification email, the results came in quickly!
It read: “Miss Harrington, I am very pleased to say your results came back normal.”
Nothing else. No follow up, explanation for my various symptoms, or next steps to take so I can go back to living my life. Just this doctor’s feelings, and the word ‘normal’.
But I don’t feel normal.
At this point my anxious stomach decided to show up, so I threw the rest of my lunch away and went back to bed.
At least it’s not something bad like cancer, I thought, trying to console myself. But then what is it? Why can no one help me?
I’m not proud to admit it, but I called in ‘sick’ and rescheduled my meeting with my advisor that afternoon because I was just not able to get back out of bed. It wasn’t a complete lie; I was still exhausted and probably could have used the extra sleep. But I also could have come in. (David, if you’re reading this, oops… Sorry.) My alarm went off again at 5:00 and I forced myself to get out of bed and head to campus for my LGBT 101 class. It’s a once a week, so missing once is missing a whole week’s worth of material. But I did the bare minimum. I waited until the last possible moment to get out of bed and leave my apartment. Didn’t eat dinner, didn’t even brush my hair. Just threw on my sneakers and barely made it on time.
Luckily that class we mostly watched informational videos, so my contribution was not required. When I remembered to do so, I took notes, and exchanged the necessary pleasantries with my classmates. Then, when class ended, I stood up, and immediately fell back into my seat, dizzy as hell and with shooting pain in my back. After a few minutes, when I was sure I wouldn’t fall over, I left the classroom and made it back to where I had parked in the garage.
And then I lost it.
Anyone passing by my car would have thought a madwoman was behind the wheel. I cursed at the top of my lungs, punched the seat next to me, and sobbed like I was going for an Oscar. I was furious. I was frustrated. I was confused. I was in pain. I stayed that way for at least 20 minutes, letting all the emotions out in the relative privacy of my car parked in a dark corner of the garage. Then, I pulled myself together, as I always do, and drove home.
I called my dad and chatted with him for a little bit, which always makes me feel better. I came home, struggled through my French homework, emailed some professors, and went through the motions of being a good student. Once the basic necessities were done, I crawled back into bed, not bothering to change my clothes or brush my teeth. Just curled up in a ball, my back still throbbing, and scrolled through social media on my phone, hoping to find a distraction interesting enough to take my mind off the pain.
What’s the point? What is the point of making all these appointments if no one can help me? What is the point of studying French if my mystery illness makes it almost impossible to remember simple vocab or understand when someone is speaking to me in English, let alone a foreign language? What is the point in trying if I’m on my own? What is the point in any of this? Why am I here? Why am I alive if my life is just pain? If this is life, do I really want to live?
Then, there it was. A sign from God, the universe, or simply the Facebook algorithms that decide what posts I see.
“If you need help, here are some resources”. It was some websites and links to free online counseling, and then at the bottom, the suicide prevention hotline.
Without thinking, I called it. After the prerecorded message instructing me to call 911 if I, or a loved one, was in immediate danger, I was connected to a friendly sounding woman who introduced herself as Alex. Funny how things work sometimes, right?
I think it is important to note here that I am not suicidal. I don’t want to kill myself; I don’t want to die. I just sometimes don’t really want to live either. And that’s enough of a reason to call.
We spoke for over an hour, going over my feelings and frustrations, my thoughts and worries, and my complete lack of solutions. We went through online support groups for chronic pain, and together, remembered that life is so much more, I am so much more, than this illness. Even if sometimes it doesn’t feel like it.
So there it is. Most of the time I try to hide how hard it all is, but this time, you’re seeing the raw truth. You were getting the truth before, it was just strongly, strategically edited. But this time it’s straight from the horse’s mouth. You know, if the horse was named Alex and could type.
Having a chronic illness, living with chronic pain, and not knowing for sure what comes next is scary. It’s fucking terrifying. And it’s hard as hell. And yeah, sometimes it makes me question why I’m here, what I’m doing, if it’s all even worth it.
But then I remember that it’s in those moments, those moments of hopelessness, that I am at my strongest. Because despite it all, I’m still here. And for now, that will have to be enough.
TwinTalk is Alex’s vlog channel with her twin sister! Check out her latest video on her health updates!
Hi everyone! For those of you who don’t know, I underwent a diagnostic laparoscopic surgery on Monday to look for the cause of my pelvic pain.
Since I was 17, I’ve been on continuous birth control to skip my periods due to extreme fatigue, nausea and vomiting, cramping, emotional upheaval, and debilitating pain. My first GYN told me it was all normal PMS stuff and that I would just have to learn to live with it like everyone else, but prescribed me hormonal birth control nonetheless. When I got to college, the pain continued and disrupted my life should I forget to take my pill on time or, heaven forbid, actually menstruate. That’s when I started doing research and talking to different doctors who told me that most likely, my pain was caused by endometriosis (for more on that, check out my earlier blog post, What’s Wrong With You Part 1). So, for two years we’ve been treating the symptoms, assuming we’d discovered the source of my pain, and deciding to put off surgery until I had a solid chunk of time to recover. Then Monday comes around, I go under, the doctors go in, and…
Nothing. Zip. Zilch. Zero. No endometriosis, no scar tissue, no cysts, no nothing.
Don’t get me wrong, I am relieved I don’t have endometriosis! As a painful medical condition without a cure, endo is not something anyone wants to have. But this begs the question: What do I have? If all my insides look hunky-dory, and believe me, they checked everywhere, what’s causing all the pain? Could this be part of my fibromyalgia? Or is there an underlying hormone condition spiked by my menstrual cycle?
We have no idea.
Right now, the only thing I can do is wait, and then discuss my options with my GYN at my post-op appointment next week. Until then, the thing I need to worry about is recovery, because even though they didn’t have to remove anything, they did cut me open in 5 places, and that’s something that requires a bit of recuperation.
I will admit, I’m feeling particularly frustrated. Part of me wanted there to be tons of scar tissue and endo so that I could have a feeling of justification for all the doctors who doubted my pain, and if I’m honest, so I could justify some of that pain to myself. In order to kill a monster, you have to be able to name it and right now it feels like we’re back at square one. I’m like Wile E Coyote after his rocket propelled skates shot him past the Road Runner and into the cliffside: back to the drawing board.
The positive is this; we’ve ruled out a few causes of my pelvic pain. And my fellow WorryWarriors know, sometimes that’s the best you can hope for.
Hi friends! For those of you who were waiting for this week’s blog post, that was supposed to be up on Friday, I’m sorry for the delay! As you fellow Worry Warriors and Spoonies know, chronic illness can get in the way of many of life’s activities and sometimes we have to prioritize necessities over wants. This week I’m changing medications and am dealing with all the lovely side effects that come with that, the least of which is a debilitating headache that keeps me in bed. I should have the next post up soon, but until then, I hope you’ll stick with me through the wait!