This is the second of two parts (thus far) of my "official" story about living with chronic illness. Read part one, "Fibromyalgia: My Story" here. This also acts as a kind of part two to my mental illness story, "Obsessive-Compulsive: My Story," which can be found here.
*Contains discussion of suicidal thoughts*
Chronic fatigue syndrome (CFS), also referred to as myalgic encephalomyelitis (ME), is a medical condition characterized by long-term fatigue and other long-term symptoms that limit a person's ability to carry out ordinary daily activities.
Interstitial cystitis (IC), also known as bladder pain syndrome (BPS), is a type of chronic pain that affects the bladder. Symptoms include feeling the need to urinate right away, needing to urinate often, and pain with sex. IC/BPS is associated with depression and lower quality of life.
Postural orthostatic tachycardia syndrome (POTS) is a condition in which a change from lying to standing causes an abnormally large increase in heart rate. This occurs with symptoms that may include lightheadedness, trouble thinking, blurry vision, or weakness.
-- via Wikipedia, the free encyclopedia
As of next month, it will have been four years since CUCUY (originally titled SAMMI), the most recent original novel I've written, first came into being.
These last four years have been, to put it lightly, challenging, and so has my relationship with CUCUY. From the beginning, I struggled with this book. Though I met the NaNoWriMo 2014 50,000 word challenge with ease, as I had for many years before, I didn't finish the first draft until February 2015. That, for me, was a heck of a long time. I was used to writing a book a year, each one within the space of a couple months, and then spending the rest of the year editing.
My struggles with CUCUY may have been one of the first signs of the chronic illness hell I was descending into. The fact is, I don't know when my chronic illness status changed from "stable fibromyalgic" to "deteriorating spoonie with multiple chronic illnesses." One of the weirdest things about having a chronic illness like fibromyalgia is that it becomes much, much harder to tell when something's going wrong with your health. After all, you're tired and in pain, everywhere, all the time, and the best way to live with it is to ignore it. Your body's natural warning system becomes the boy who cried wolf. I'd run into trouble with this before, but never so much as I was about to.
As the months passed, I became sicker and sicker without ever really acknowledging it. I began to have, at intervals of a few months, "bladder infections" that didn't show up in cultures. During the same period, I tried and tried and tried to get through my first batch of edits on CUCUY so that I could share it with my beta readers and critique partners. In late 2015, I was forced to finally acknowledge that my level of fatigue had gotten to the point where I needed to make changes: i.e. I had to quit cello (again). Still, I saw this simply as a sign that my stability with my fibromyalgia had given way to its initial inclination to worsen over time. I told myself that I would push through to the end of my Bachelor's degree, and then my doctor and I would figure out how to stabilize my health.
In June 2016, I realized that things weren't working out with CUCUY and I needed to take a break. I did so by giving into my new and unrelenting need to write a fanfiction. I'd already planned a full, novel-length story about what happened in between Avengers: Age of Ultron and Captain America: Civil War, and I enjoyed starting the project.
Except. My condition was continuing to get worse and worse, with fatigue and brain fog as the predominant symptoms. Other than a couple of chapters a week of my fanfiction, I had come to the point where I was unable to do anything besides schoolwork and sleeping. I was eating fro-yo delivery every night, missing church every week, failing to do the kitty litter, forgetting showers, and I felt like crap. On top of that, I had a worsening pain in my pelvic area that now required me to use a hot pad every night in order to sleep. But I still thought it was all just the fibromyalgia, and as I crawled across the finish line of earning my B.A. in English in July 2016, I clung to that theory.
In September, as I was starting my Master's in Library and Information Science, my primary doctor met with me and was quite alarmed at my condition, for which she had no answers. Still, it never occurred to me that this was anything more than fibromyalgia--until late October, when my pelvic pain went from troublesome to get to an emergency room right now. Within a week, I had been diagnosed with severe interstitial cystitis (IC), the first of three new diagnoses I would receive. Up to that point, I was unaware of the fact that I was experiencing severe pain while peeing, a key symptom of interstitial cystitis. But when I went to pee a couple of days after my first IC treatment, I was stunned at the difference. I actually had to look to see if I really was peeing. Thanks to the fibromyalgia, pain was so normal to me that it had never even occurred to me before to question what peeing felt like.
Unfortunately, from there, my situation continued downhill. I started having truncal spasms that no one could explain. I was also in an extreme amount of pain thanks to the IC, topped off by multiple episodes a month of the worst pain I could imagine, the kind that defies reason and turns you into a desperate animal. Soon, when I wasn't in various doctor's offices, either getting treatment for my interstitial cystitis or having my other symptoms shrugged at, I was spending all my time in bed. As my fatigue and brain fog worsened, my ability to do my schoolwork decreased, and at the end of the semester, I went on medical leave. My life became nothing but TV show after TV show, endless pain and endless exhaustion, with the only bright spots being the two chapters of my fanfic I wrote each week. I had never written a novel-length piece so slowly before, but it meant everything to me.
Still, it couldn't make up for the stagnation of my life, and as time passed with no answers, I became suicidal for the second time in my life. This was shameful to me; since I'd already been suicidal and come through it once, I'd thought I'd never feel drawn to that "solution" again. But suicidal thoughts are what happen when pain begins to exceed resources for coping, and there are many things that can cause that level of pain. If I hadn't had my mom and my urologist on hand to treat my physical pain during the many times it became unbearable, I'm all but certain I would have made an attempt on my own life.
In early 2017, I switched to a new antidepressant, and my brain fog improved dramatically. My mom said it was like I was suddenly present in my life again. Since all the doctors I'd seen had no answers about the spasms and fatigue, we made plans for me and my brother to go to Mayo Clinic in late July. Meanwhile, my interstitial cystitis was starting, very slowly, to improve. These three things gave me real hope again, and my suicidal thoughts died off.
Between February and July, I discovered a collection of food intolerances, and through them, that my diagnosis with IBS-M back in 2010 had been wrong (I actually have a minor case of IBS-C, plus food intolerances). Shortly before I went to Mayo Clinic, I finished my fanfiction, and it continues to be a piece with which I'm quite proud--all the more amazing when you consider that my brain was missing in action for most of it.
When I finally got to Mayo Clinic, my initial diagnosis of fibromyalgia was confirmed, and I was further diagnosed with chronic fatigue syndrome (CFS) and postural orthostatic tachycardia syndrome (POTS), with a more minor showing of orthostatic hypotension. I was told to wear compression stockings, drink more water, and eat lots of salt. I attended a clinic that was all about managing fibromyalgia/CFS. (The two conditions are extremely comorbid and are also quite comorbid with the other conditions I have. Basically, I live in the middle of a mysterious, incurable cluster of sick). Most of what I was taught at the clinic I already knew from years of living with fibro, but they had some advice on stretches and sleep hygiene that I hadn't yet applied. The overarching idea expressed in the program was that people with these conditions need to find their limits, aka how much they can do without setting off worse symptoms, and then stay right at the edge of those limits. Over time, with the help of other treatments, the limits expand and you're able to do more.
Back at home, I set to work making the recommended changes. With the compression stockings in particular, I saw an immediate, significant improvement in my fatigue. As the months passed, I continued to get better, and I both restarted my Master's program and restarted work on CUCUY. Unfortunately, my novel continued to confound me, and by the beginning of this year, 2018, I realized that I no longer felt any joy in editing it. In fact, I dreaded working on it. It took an incredible force of will for me to achieve only little bits of editing.
Then in July, I hit the plateau I'd been waiting for, indicating that I'd improved about as much as I can without an unexpected change in my body or the invention of a new miracle drug. So this is my new stable, my new norm as a person with multiple chronic illnesses. I'm very far from where I was when I wrote part one of this story, but I've also come a long way from where I was before Mayo Clinic. I'm not spasming anymore. Thanks to gabapentin and monthly bladder instillations, my IC pain has been halved. I'm able to leave the house for as many as six hours a week on a regular basis, including for church, and I can even handle a day trip every couple of months. I can do intellectual work for most of the day, albeit at a slower pace than before. I can also more or less keep up with a few basic chores. I'm able, in short, to live a happy and fulfilling life, though a very limited one.
Yet I wasn't happy. The realization that I'd hit my new norm set off a grieving period where my mental health took a major hit. I felt bitter and sad all the time, and I was falling into all my major "depression habits": eating too much, watching TV too much, forgetting to shower, forgetting to exercise, going to bed too late, waking up too late. I was unhappy with the now, where I was talking classes that I found boring and achieving very little when it came to my own books. I was unhappy with the future I saw before me, where my ability level wouldn't allow me to work as a librarian even if I could somehow find a nearby position in youth services. Most of all, I couldn't stop thinking about how much of a burden I was always going to be to my family, whether it's the one I was born into or one that I somehow manage to build for myself despite all this.
So I got to work beating my depression habits back with a broom, which helped a little. I restarted counseling with my old therapist, who pointed out how irrational and self-critical my perspective had become again--in essence, how my old nemesis Codi had taken the wheel again. Having someone there to help me see that my thoughts are irrational was quite helpful, since I'm usually able to control my OCD once I recognize it.
More surprisingly, though I find the class I'm taking right now plenty boring, it's been a very useful resource for my mental health. In this class, I've had to contact librarians to ask them questions for the purpose of analyzing how they respond. The questions were totally free choice, whatever we wanted to ask, and I asked two things that ended up helping me: 1) "Where can I find some self-help resources for emotionally coping with being disabled?" and 2) "How do you motivate yourself to do things?", with the "thing" being, in my case, editing CUCUY.
The resources I was given for the first question weren't that great, but they led me to a whole bunch of self-help books, some of which were good. I think I just felt a bit better reading about other people in situations similar to my own. With the second question, two pieces of advice stood out: 1) meditate daily and 2) make the thing you're trying to be motivated about a daily habit. So I started praying while I did my stretches every day, since prayer is a form of meditation and a habit I'd like to cultivate. I also started setting aside an hour at the end of each day to work on CUCUY. I've always been skeptical of the advice to "write every day," since, like most writing advice, it only works for some people, but I was willing to try anything to solve my "editor's block."
Across the past four years, I've had many different theories about why CUCUY has given me such a hard time: because I've been having a health crisis, because the subject matter is so interwoven with and thus triggering for my own OCD, because the craft itself is more complex and difficult, because I'm better able to see everything I need to edit now and it's too overwhelming, because all my friends are excited about it and it's too much pressure. In the end, I don't know if any of these were true or if all of them were true or if none of them were. All I know is that making a daily habit of editing worked for me.
Immediately, I was making more progress than I had in months. After about a week, I experienced a moment of enjoyment in my editing, which startled me in the best of ways. I'd been so afraid that I'd lost my ability to feel real interest and excitement in my writing. But the next day, I enjoyed it the whole time, and the next day, I began to look forward to working on my book. Soon I started working on my book extra hours during the day. As a result, my mood lifted a great deal. I don't know if my struggles with CUCUY were weighing on me more than I'd realized or if writing on a regular basis simply makes me happier, but either way, this change ended up being one of two things that had the greatest positive impact on my mental health.
The second thing was a major decision that changes my future. After a great deal of thought, I've decided that, once my current class is over, I'm going to quit my Master's program. I'm turning my attention away from librarianship and instead towards the possibility of making some money through editing. There are many reasons behind this decision, which I'll talk about in more detail next week, but my new disability level, including my inability to work regularly outside the house, is really the deciding factor. I want to be able to be productive despite my illnesses, and I honestly believe this is my best chance at that.
So with all these things combined, I'm doing well again emotionally. I'm continuing to work with counselor on fully stabilizing my mental health. I also continue to make decent progress with CUCUY, though there are indeed a lot of changes to be made. I'm determined to get to the end of these edits before I move on to a new project, so I will once again be missing NaNoWriMo this year. However, I hope to write something new during the next Camp NaNoWriMo (in April, I think?). It'll be my first new original novel in four years! And this year, I will be dressing up for Halloween again, for the first time since 2015.
Looking back, I'm amazed at how many resources I had at my disposal that allowed me to get through this period of my life. It's important, of course, to recognize that many people don't have the advantages that I do. I'm privileged to have parents who have been and continue to be able and willing to support me, both financially and practically. Though the town I live in comes with all the disadvantages of isolation, it also comes with all the advantages of being a wealthy area. These two factors significantly diminish the extent of the challenges I faced, especially in getting proper medical care. Even as someone with these advantages, I find the problems in our current medical/disability system to be a significant roadblock. I worry a great deal about what I'll do for health insurance once I turn 26. However, I know I'm far better off than many people who have chronic illnesses/disabilities.
I was also lucky to have the urologist I did when my interstitial cystitis was at its worst, as his willingness to take immediate action and his treatments set me on the path to stability and saved my life. Though I went to many different doctors who were unhelpful and even hurtful across the last four years, I still consider myself fortunate to have found a few that got me the answers and the treatments I needed. Many people with conditions like mine fight for years to get diagnosed. Good doctors (and nurses) make all the difference.
However, some of the important resources that have gotten me through the past four years are widely accessible and a bit unusual. I never could have predicted the impact that writing fanfiction would have, and before the idea occurred to me, I didn't expect to turn to editing as my day job. I find it amazing that a class for a degree I'm not going to finish was so helpful to me, though it's somewhat less surprising that a public library would be of use. (Support your public library! If the MLIS classes I've taken have taught me anything, it's how incredible public libraries and librarians are.)
In the end, though the past four years brought unexpected issues with both my physical and my mental health, thus changing the course of my life, help also came from unexpected places. I can never be too grateful for that.
Thanks for reading, everyone, and check in next week for a post talking in more detail about my decision to quit my MLIS degree.
Images via [my own], ao3feed-scarletvision on Tumblr, eand.co, moneydonut.co.uk, giphy.com, thebarefootwriter.com, and workingnurse.com.
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