self.watch

Hi readers. It's been a minute!

I've been meaning to make a post documenting my experience over the first few months as my symptoms developed. I considered combining this post with the medical treatments I sought, but in order to not complicate things too much I've decided to separate that out into a future article. This post will focus on my physical and cognitive issues as they developed. Get excited!

Week One

My first week after my symptoms developed I spent trying to live as normally as I could, while also attempting to determine what exactly had happened and what had changed in my brain. I was not dealing with a great deal of symptoms at this time, but there were several things I noticed:

• Everything seemed too bright. Not in a typical 'photophobia'-like eye pain way, more like my head just couldn't really process all the light correctly.
• My vision seemed blurry and faded. Kind of like the contrast had been muted.
• Although there wasn't anything actually wrong with my peripheral vision, it seemed like my brain could now only really process a small fraction of my field of view. I remember it being apparent when looking at someone's face or watching TV; it was like I no longer could 'take everything in' the same way.
• Icepick headaches. Never had any kind of headaches before, but these were brutal; whenever I was in front of a screen, I'd have sporadic 2-3 second headaches (usually on my temples) that felt like someone was taking a dagger to my head.
• Tinnitus. Constant slight ringing in both ears that luckily was only noticeable when my surroundings were quiet. I'd have random flare-ups when using screens, though, where one ear would begin ringing extremely loudly and then remain muted for a few hours afterwards.
• Ghosting. I didn't know the term at the time, but I noticed that lights over a dark background (i.e. dark mode text) seemed to be doubled, with a ghost image just over the original. Almost like an astigmatism.
• Screen intolerance. Screens had gone from being my best friends to my worst enemies overnight. All screens, but specifically my phone, seemed extremely uncomfortable to look at and made it hard to concentrate. This also affected my ability to read, which I will reserve an entire other blog post to discuss.

On top of all these physical symptoms, I also was left with a strange sensation in my head that I best describe as feeling 'feverish' without the fever. Kind of like the fogged, sickly haze you feel when you're in bed with a high fever.

Psychologically, there were a few things I noticed. I felt this great sense of 'overwhelm' at basically any task I performed. In the beginning I thought it must be that my cognitive abilities had somehow been compromised; I'm not sure that's the case, in retrospect I think my stress tolerance had just been cut down to a miniscule level. It was frustrating, but also strange and foreign, since I had always been laid-back and stoic during stressful times. I also noticed that dusk would consistently bring about strong feelings of doom and despair. I distinctively remember one night -- I believe it was the Tuesday of my first week of symptoms -- when it just felt like my world was somehow over. This was entirely illogical; it had been just four days. The feeling was overwhelming, though, and proved to be somewhat predictive.

Despite this mysterious sudden onslaught of symptoms, I was able to work a productive week in the office, proving to myself that whatever happened clearly hadn't seriously eroded my abilities, which was my initial concern. The work was certainly more difficult though, primarily due to my distracting symptoms and issues with screens (I had four 4K displays at my desk). I also noticed that I was completely mentally exhausted each day coming home from work. Every day that week I came home with terrible eye strain and tension headaches. In bed at 9 PM became my new normal.

I recall feeling a good bit better on Friday. The symptoms were still present, but I was able to tune them out quite effectively and felt motivated and focused at work. That night I went out with friends and explored some of the Chicago bars I had been meaning to see. Too many beers and mixed drinks later I woke up Saturday feeling absolutely terrible. This was the beginning of a pattern I noticed: alcohol seemed to make my symptoms a great deal worse, especially the next day. Regardless, I decided enough was enough and booked a flight back to my hometown to be with my girlfriend and family.

Week Two

My symptoms took a turn for the worst this week. I'm not sure if it was the alcohol or just happenstance, but the change was drastic. I spent the week working from my girlfriend's apartment, fighting through my symptoms. Some of the new things I noticed:

• My vision had become a bit 'blurry' -- everything seemed a bit out of focus and slightly distorted.
• Everything seemed 'noisy' and fuzzy. I remember staring at the celiing and seeing this pulsating graininess. Everything seemed to be vibrating slightly.
• I began seeing random flashes of light in my central and peripheral vision. Little white and black sparks, as well as bigger blue flashes, without any clear cause.
• Started noticing halos and big colorful starbursts around lights. I always had perfect vision and excellent night vision, now it was difficult to walk outside in the evening due to the street lamps and car headlights.
• I had suddenly developed a massive cluster of floaters in my central vision. I had never experienced these before, and I was now easily seeing 100 or more when outside or looking at a bright background.

I recall visiting my family the following weekend and noticing how surreal and different it felt inside my childhood home. Everything seemed foreign; the colors were off, everything was grainy, the lights were too bright... in the moment it was rather terrifying. I remember my parents' faces being dark with this weird overlay, almost like light falling rain. This was the first of my experiences of familiar environments suddenly appearing different through my altered perception. Each time took a similarly depressing toll on my mental health.

I should also note a strange experience I had about two weeks into my symptoms while I was staying with my girlfriend. One morning at around 6 AM I awoke to severe abdominal pain localized in a specific spot on my left side, just beneath my ribcage. I wasn't a stranger to stomach issues, having many allergies as a child, but this by far the most intense pain I had felt, probably a 9/10 on the pain scale. For an hour and a half I was essentially curled into a fetal position hoping for it to pass, but it only seemed to worsen. I was getting ready to call an Uber to a local urgent care when I shifted my body and the pain entirely vanished within a few seconds. I'm still not sure what happened nor if it was related, but it was a scary experience nonetheless.

The Next Month

The following month I experienced an increase in severity of my symptoms, as well as a few new ones, while I continued to power through work. I tried my best to live my life like normal but it had become extremely difficult. Overstimulation made travel, exploring and socializing difficult. I recall waking up one morning and seeing an intense layer of static on the ceiling, like from an old TV set. After some research I realized I had developed the complete 'Visual Snow Syndrome' disease presentation. One other scary moment comes to mind; on a picnic with my girlfriend, I remember looking up to the sky and seeing it flickering between blue and bright pink. I rubbed my eyes and after reopening them this mass of bright sparkles spread across my visual field. It was surreal and pretty damn scary.

A quick summary of my symptom changes:

• My tinnitus had become louder and always noticeable. Rather than a typical ringing it sounded more like hissing or television static.
• Always-present overlay of static in my vision, especially noticeable at night time.
• Strange blue light patterns when in total darkness or with my eyes closed. Kind of like moving blobs of blue static. Not exactly a problematic symptom, but strange nonetheless.
• Severe difficulty reading. While at first this was only an issue with screens, I was now beginning to have trouble reading books, magazines, even billboards and food labels.

The Next Few Months

From July onwards I continued to deteriorate. My girlfriend and I planned a week-long vacation to Seattle to visit friends and escape to nature. The trip ended up being somewhat of a nightmare. Despite Seattle being one of my favorite places, my changed perception and overstimulation left me constantly feeling on edge. We booked a cabin in a beautiful forest a few hours out of the city, and I remember nearly going into a full panic after watching the trees sway in the wind. I recall this being a pivotal point where I recognized something was seriously wrong.

I somehow managed to continue contributing at work and delivering at a high level despite my condition. My photosensitivity had become rather severe and dealing with the bright fluorescent lights and my monitors was tortuous. I felt dizzy all the time; not off-balance per-se, but as if my eyes and brain weren't properly connected. It became difficult to walk at one point; my legs constantly felt off-balance and as if I were swaying on a boat. I began experiencing severe head pressure which would spike as soon as I'd wake up. My vision had become so blurred and distorted my dreams had become more realistic than real-life. My brain wasn't able to process peoples' faces properly; this was a strange, surreal pheonomenon, but my coworkers faces seemed distorted and artifically blurred when I'd look at them.

In October I went on a recruiting trip with my company back to my hometown. On paper the trip should have been great; five-star hotel, nice dinner, fancy drinks, get to catch up with friends. Despite only having a few drinks, the next morning I recall waking up and noticing my vision was literally dimmer; like everything was a solid 50% darker. I was anxious as hell going through the airport and hearly had a panic attack once I was on my flight.

I realized this wasn't going to get any better on its own, especially while I tried to balance work at the same time. I caved and filed for short-term disability in November.

There's a lot more to unpack here, including the psychological side of my downward spiral, the treatments I tried, and background on what could have caused my illness. I'll get to these in future posts, hopefully soon.

-A

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