Keeping Things in Perspective

Depressing. That’s the single word I’d use to describe yesterday’s medical appointment. When I saw him a few weeks ago, although I also received what could be considered unfavorable diagnoses, the appointment was couched in more hope, a possibility of answers and treatment. This time, the diagnoses and their ramifications hung naked, with no silver lining disguise. By definition, chronic illnesses or disorders persist; they do not resolve and many, by their very nature, do not have cures or effective treatment. It’s more about managing the symptoms, mitigating them if lucky, and attaining the highest quality of life possible. On good days, when wearing positive attitude rose-colored glasses, this feels like enough, a pill, though big and uncomfortable, is possible to swallow. On other “weaker” days when the pain is just too obnoxiously loud to be ignored, the sunny attitude is stripped away, leaving what actually remains, the somber outcome, the harsh reality. Most weeks are populated by both emotional responses, although in the weeks that are especially peppered with more excruciating and frequently debilitating symptoms, the balance tips in favor of viewing the bleak outlook with the pessimism that it rightly warrants.

The reality and prognosis painted in yesterday’s appointment was particularly disheartening because the first appointment presented the vague description of my health problems in sort of an intangible dotted outline of what “could” (but hopefully wouldn’t) be. Yesterday, the outline was traced in permanent black marker, with all the gaps and white spaces filled in with distressingly boldly somber colors. I left feeling unusual clarity and unusual hopelessness and sadness. Maybe it was the unrelenting rain and March-like temperatures despite the calendar’s insistence that it’s early June, but I felt literally and figuratively cold, wet, and despondent. I couldn’t even form words in my head, just a feeling of endless grayness, swirling around a vacant lot.

It’s easier to imagine a more optimistic picture when things are presented hypothetically. When diagnostic tests objectively present undeniable data that solidify the hypothetical into reality, the important keystone maintaining that hope is removed, and it all comes crumbling down. Although it’s always possible to view the same situation with a different (and more upbeat) attitude, in the former pre-information stage, it’s a genuine optimism, and in the latter, it is feigned, which takes endurance to uphold.

I’ve faced many disappointments and challenges over the years that I was able to overcome or at least tolerate as my new “normal,” like absorbing a small ball of black clay into the multi-colored amorphous blob representing my existence. At first, it adheres to the surface, marring the appearance with an unsightly blemish, but after a few days and continually rolling, folding, and spreading, the blemish is adopted and blended in to the whole. I have built a fortress to shield my flame of persistence and hope from the resounding winds of pessimism, blowing continuously from varying angles to try and extinguish its glow. I will not resign my efforts to hope for the best and put on a brave front. Bad news is just an impetus to learn more, seek alternatives, and be grateful for what I do have. I’m blessed. Nothing I face is terminal; I’m not dying, and that’s more than many people can say. My conditions may be degenerative and manifested in more substantial physiological damage than we initially thought, but all that really means is more joint and muscle pain and less musculoskeletal and GI function. At the beginning of the day or the end, this is still a way more privileged, lucky, and healthy life than many people inherit. How truly thankful I am to have been born into my life, with the parents, family, friends, circumstances, opportunities, safety, and blessings that I am so abundantly handed every day. Any setback I encounter is surely a dream for someone else in her battle in this world. I fight for myself to be strong and that becomes much easier when I view every breath as a gift and every circumstance as a blessing. So maybe I choose to edit that first word. Depressing. I’m not quite ready to genuinely call it neutral, but for now, I’ll settle for disappointing. But, I can work with that.

 

Insomnia

Lately, I’ve been sleeping worse than my “normal,” which is already borderline unworkable. I am not aware of a definitive reason for this backslide but I need to find some modifiable causes so I can get back on track. Usually, my insomnia is a product of PTSD or generalized anxiety, physical pain, or SPD problems, and I think that all three of these factors are present in my current bout. The other night, the pungent skunk smell woke me up suddenly at 10:27 PM and I was up for the remainder of the night. I wasn’t anxious, I just could not get comfortable and settle my body back down. Strong smells give me headaches, so eventually I took some ibuprofen to try to lessen the throb through my temples, a pounding so heavy that my head was rising and falling perceptibly on my pillow with each heartbeat. Once the medicine eventually kicked in, I seemed too alert and out of sorts to return to sleep.

Most nights, joint and muscle pain is the principle offender keeping me awake. I have recently learned that I have a connective tissue disorder and an immunological disorder that interact in an (im)perfect storm, saddling me with eerily puffy joints and pain that radiates outward to overly tight and achy muscles. My entire body feels the way the ears feel after an extremely loud concert, when they continue to reverberate with the auditory ghosts of the band’s drum kit. My knees alternate hues between my normal pale skin and flushed pink with each cyclical pulse. My mom calls the crepitus and extreme tightness my Tin Man body, but unlike that jointly metal man, there’s no oilcan equivalent that can lubricate my adhesions. They seem to spontaneously resolve enough to restore enough mobility to move around after a few days of an intensified flare up. Needless to say, more often than not, my body is its own drum set at night, with different joints conversing in palpable throbs. It’s not only painful and debilitating, it’s a sensory assault that exceeds my attenuated nighttime threshold. Lately, it does seem that this pain has ratcheted up a few notches in its severity, which surely is contributing my increased sleep disturbances.

Later today, I have an appointment to revisit the rheumatologist, so hopefully I’ll muster up the courage to explain the nearly constant pain that has characterized the last month or two and then get a more workable solution.

When I can’t sleep, I think, or more accurately, my mind floods with thoughts. Lately, I’ve been reading at night. It seems that finding connection and unprecedented compression in Charlotte’s Web was a gateway to discovering my appreciation for other fiction books as well. It’s still the case that I prefer nonfiction books, particularly those pertaining to science or health and biographies and memoirs are my favorite, but I’ve found that some literature mimics a memoir in voice, story, and tone and I can get engrossed in those too, as long as I’m patient enough to get through the first few chapters. I recently devoured two stories told from the point of view of Japanese-American characters and really enjoyed those and found two others centering around characters with Asperger’s that consumed my attention. Even when I wasn’t reading, I found my mind constantly perseverating about the storyline or characters. I’m sure this is normal for your average bibliophile, but that’s not a word I’ve ever used to describe myself. Until now. This interest is starting to collect all the ingredients needed to prepare a fully cooked obsession. When I’m not able to read, I’m searching for my next book because my acceptance ratio is still pathetically low. Thank goodness the library allows for twenty reservations; I’m only able to get into about one in that group, but when I do, it’s a race to read fast enough to satisfy my curiosity and intrigue. When the last page had been turned, I find myself needing to console my little heart ache that those characters aren’t real and their stories don’t live on as something else I can follow. I think that’s one of the magnetic qualities about true biographies and memoirs. The people are real and in today’s world of many people accessible via social media, it’s easy to maintain a “relationship” with those individuals who spoke to me.

Like many times, writing has again served as a vehicle to drive me to that “eureka” place. I’m suddenly wondering if my draw to read and my excitement that certain books cultivate is actually contributing to the insomnia from a two-pronged approach. First and more topical, my doctor recommended I read at night when I can’t sleep as a sedative to lull me back to sleep. It seems this, like many things in my life, had had the opposite effect and waking up to read serves as a treat so my subconscious rouses me to provide a dopamine hit splattered on the pages of my latest read. Secondly, the plots and characters penetrate that “I care about you” part of my brain, adding to the stockpile of endless thoughts and emotional responses to mull over at night when my eyes shut and switch is turned on to process the conveyor belt of amassed ideas. If the book contains suspense, danger, or some other peril the character must face, I worry constantly about his or her successful resolution. When characters are in stressful situations, I’m in perpetual angst. When they experience loss, so do I. I carry the burden of their woes, at least until I oversee their mitigation of the strife and even at that point, I seem fixated on worrying about what might have been. Maybe I’ll have to limit the reading time to available breaks in the day like waiting for a doctor!

Again, like most of my problems, there’s no single culprit here and as with many things in life, nothing is purely good or bad. On the surface, reading is a healthy habit but as someone who lacks the ability to easily find balance, I may need to implement a system to moderate my exposure to and timing of books. One thing I’ve learned is that I’m hypersensitive to nearly everything—changes, emotions, ideas, the environment, medications, to name a few. The most successful approach to introduce something without gravely disturbing any semblance of equilibrium is careful, deliberate titration, followed by a pause to assess the impact, and then either continued slow-dosing or rerouting, it necessary. While my instinct and modus operandi is always to go full-throttle with things, ultimately, this is rarely met with the success that I hope for or that I can possibly achieve with more gradual assimilation.