I’ve sat on this piece for over a year now, unsure just how to write it. What I wanted it to say.
Last year I set out to start writing more focused on youth experiences and my own experience throughout high school and college with migraine, chronic illness, and disability. And I didn’t really do much of any of that as more health complications continued to come up.
So this won’t be a series. At least not one that’s on any kind of schedule with any kind of expectations.
It was mid Fall, my first semester at Clemson. My migraine attacks had been ramping up all summer, often leaving me so incapacitated I didn’t function beyond what was absolutely required of me. I’d get to class. I’d finish my work. I’d clock all my hours at my work study job. I’d work as efficiently as possible in off hours studio time.
Back then, available migraine drugs looked a lot different than what we have now. My most effective medication put me in a drunken state. I’d often walk arm in arm with friends approaching studio on days I’d taken my meds. Knowingly or not they helped me stand up straight and make it safely up and down the stairs.
I could get around campus okay.
I could usually manage a bare minimum level of focus as well, even if my brain was moving in slow motion.
The thing that’s tricky though is this fogginess that came from medications doesn’t look a whole lot different than the fogginess I experience during severe pain, especially severe pain mixed with being half asleep.
Many mornings, either in the middle of the night or as the sun was coming up I’d find myself in this exact same fog. Overwhelmed by the mix of pain and symptoms, the need to get put together for class and work, the need to get something in my stomach, the need to remember which day it was so I packed the right books and binders in my bag, and the pressure to just get through the day.
I didn’t have any formal accommodations during this first semester, so like any other student missing class would impact my grade regardless of how ill I was feeling.
Fumbling through that fog one early morning I awoke knowing that day would be a battle. I climbed off my lofted bunk and dug through the dark in my concealed bin containing all of my “technically you shouldn’t have these in your dorm” meds. I pulled out my regular dose of my abortive. Poured just enough water into a cup to swallow them. And quietly dragged my way back into bed hoping my rustling hadn’t awoken my roommate, who at this point in the semester had long decided I was The Worst Person Ever.
I fell back asleep quickly.
The meds coursing through my veins. The sensations one could really only describe as hallucinations took over and I sunk into a dream land for another hour or so.
Usually when I take meds before it’s time to get up they’ve started working and my pain is more manageable as I start the day.
But when I awoke, I felt even worse.
I was in even more pain and now I was extremely nauseated and light headed.
Between each deep breath I’d attempt to continue getting ready. My brain swirled. This pain was bad, how on Earth would I make it through my classes today? It crossed my mind how tired I was of always needing meds. I brushed the thought aside and pulled out my abortive, taking it for what I thought was the first time that day.
I managed to eat half a bowl of oatmeal, but barely.
And I pulled myself together like I had on so many days before and headed off to my Physics class.
Physics was held in one of the largest lecture halls on campus, I sat somewhere in the middle towards the front with a friend. Hundreds of students poured in, the noise and commotion only making every sensation I felt, worse. We settled in to begin the class, pulling out our clickers where we’d answer questions throughout the class as a way to notify the teacher of our attendance.
I remember breaking out into a sweat. I remember my friend trying to understand if I was okay, I don’t think my sentences were coherent. I remember deciding I needed to leave, something was very wrong. I thought my heart would pound out of chest. I tried to stand and stumbled a little, thankfully not substantially enough to draw attention from anyone who wasn’t in my direct vicinity.
My friend decided it was best if he came with on my walk across campus back to my dorm.
I don’t remember this.
I remember sitting maybe an hour or so later in my bunk bed, a cool cloth in my hand and some Gatorade to sip on. My friend from Physics was still there. I remember a question about what I’d eaten and it being clear I wasn’t suffering from food poisoning despite the deathly pale look across my face.
I hadn’t really eaten.
At some point it clicked that I took my meds twice. Caffeine filled high dose controlled substances that I was already consuming at a higher than normal dose as advised by my doctor. That I took on an empty stomach. With coffee.
The hallucinations came and went. Soft convulsions came and went, moving in and out of consciousness meant the time that passed wasn’t clear to me. Almost as if I was concussed and dipping in and out.
At some point my roommate got back and my friend handed her the baton managing my care while he went to his next class.
Eventually she coaxed me into eating a cliff bar and drinking another entire Gatorade. The food in my stomach and electrolytes pushed me on my first upward trend of the day. I was able to form clearer sentences. Able to articulate what had happened and how I’d messed up bad with my meds. The nausea was clearing too.
She left sometime during the afternoon to let me rest. I’d made it through the worst of it and now I had to go through the procedural steps of reaching out to professors and hoping this didn’t set me back too far.
By the next day, it was a thing of the past.
Campus life carried on, the world swirling around me, me swirling with it.
No one ever mentioned it. And it took me so long to really write about it because so much of that day is a missing puzzle piece and in the frame of mind I was in, I don’t fully consider myself a reliable narrator of how it all happened.
For a few weeks I was scared of my meds. Afraid of myself. Afraid of the consequences if I’d been alone, or in a class without a friend. Or if I’d had to walk back alone, would I have made it? Should I have gone to a hospital instead?
A bunch of 17 and 18 year old’s managing a maybe over dose might be on par with a handful of college experiences but it’s not like we received any preparation for what to do in the actual event of the thing.
When I’d gotten to campus I’d been told my meds needed to be locked up, which meant for all practical advice purposes, I couldn’t leave my pill bottle sitting out after I’d taken them as a visual reminder I’d already taken them. Campus made it harder to avoid the exact same outcome.
Instead, for the rest of that year I didn’t allow myself to take my meds until I was awake for the day.
These days I have a much more clear indicator that I’ve taken my meds: I leave either the bottle or the wrapper on the counter for at least two days after I’ve taken my meds.
I’m not sure when this habit started, it wasn’t an immediate thing once I was no longer on campus. Perhaps it started once I learned about how much meds were actually safe to take on a monthly basis and I had to try and be more aware if I’d treated.
The truth is, this serves me well for a lot of reasons.
With monthly medication limits I’m still tied to taking medicine only every third day, so leaving the wrapper on the counter tells me it’s too soon to treat even if we’re long past overdose risk and more critically, no longer taking meds that pose that risk.
With this, I also notate in my daily journals that I’ve taken a med and at what time, the practical side of tracking you know?
Since I’m no longer in school or working and take on mostly freelance projects, days and time don’t tend to exist in the same meaningful way so these visual indicators help me tell time as it’s relevant to my meds.
Earlier this week, this proved helpful in another way.
I mentioned earlier the way pain, especially at night can mirror the feelings of meds kicking in and the fogginess and such. And a few nights ago, in the early morning hours I imagined I got up to pee, felt quite bad and went through the whole process of opening the abortive package and leaving it right there on the counter following my carefully designed protocol so come morning I would remember and write down that I treated an attack last night. I crawled back into bed, the sun peaking through the blinds, rolled over wrapped in my thick fuzzy blanket and felt the soothing sensation of the meds kicking in.
I woke up feeling okay, a bit groggy but remembering I’d taken my meds I guessed they might still be kicking in and I’d feel better as the morning went on and I got some nutrients into my body.
I finished brushing my teeth, the pain ebbing and flowing at a level not quite where I’d want to take meds and stood staring at my perfectly clean bathroom counter perplexed.
After breakfast when I came back in to take my meds it clicked. My counter shouldn’t be clean. There should be a ripped open pill wrapper in the corner. I so vividly remembered taking my meds.
But as I traced my steps in my mind throughout the night, I had no memory of glancing at the clock on my stove to help give me an idea of what time I treated the attack. Which meant I never got up, never peed, and never treated this attack. I had dreamt it all.
My system worked again, because I knew that if in the next hour or so I didn’t start feeling better I could go and take my medicine as desired. No pill wrapper meant I hadn’t treated that day and that it’d been enough days since I’d last treated that I was completely good to go.
It seems so simple. Something visual to alert you that you’ve taken (or haven’t taken) your medicine.
But sometimes it isn’t obvious that it’s a habit we should build.
The rest of my daily meds all exist in a single cabinet and I’ve never once taken them incorrectly or forgotten about them. Sure I occasionally in a sleepy spell pick up the wrong bottle, look inquisitively at it, and then pick up the right bottle, but these daily meds aren’t something I need a system for.
My heart meds that I take with dinner, are a different story, and I had to learn this lesson all over again.
It’s so easy to eat dinner and take a pill as I’m glancing at the pile of dishes wondering if I can fit them all into the dishwasher and get up to clear my place setting only to turn around and stare at the bottle of pills attempting to conjure up the memory of the cold ice water swashing around in my mouth while I took my pill. But if dinner is the same every night and the process of cleaning up habitual, those memories blur together and it’s not all that reliable.
After missing a dose on two occasions someone online suggested I set the bottle on the other end of the counter once I’ve taken it and then move the bottle back in the morning. This too has worked for me.
I’ve never doubled up on my meds again in the six years since that day.
Maybe a lot of that comes from the incredible fear that day instilled in me. That I was one careless mistake away from being the campus tragedy that would grant everyone else A’s for the semester.
And now, folks stop by, have for years and I don’t have the privilege of having the perfectly clean space, nor do I have it in me to really care what someone may think of a singular medicine wrapper left on my counter.
Because that slight untidiness?
Keeps me safe.