You never think when you wake up that this might be your last day feeling "normal". When being sick becomes the new normal, when doctors diagnose and re-diagnose you, and some have to google your diagnosis because they've never heard of it before.
Some illnesses are slow building, and you can look back and see the evidence of it coming on for years prior. Narcolepsy was like that with me. I was the sleepy one, the lazy one, the one taking all the naps. It was all I could do to not nod-off while sitting up in High School (even though I adored school) and in university I scheduled my classes so that I could take naps in between them. Lunch breaks at work were always a battle between my hunger and my exhaustion, where usually the exhaustion won out.
I thought this was how everyone felt, and I was just not strong enough to fight off the need for sleep. I thought that every morning when people woke up, everyone felt as un-rested and drained as I do. Everyone said I was lazy, so I just figured maybe I was. Sadly, these were the good days. Around August of 2012, it got worse.
I graduated university in the summer of 2012 with a double major in Anthropology and Religious Studies, a full-time job at Starbucks, and a positive outlook for graduate school. I kept my job and moved back in with my parents (who lived nearby) to save money and focus on grad school applications and academic conference papers. I was motivated, happy, and looking to the future, but something was wrong.
I couldn't stay asleep, and it was making me more and more tired during the day. No matter how exhausted I was, I could only sleep for around 1.5 to 2 hours before my eyes would pop open. I'd lay back down and yet again, would wake up an hour and a half later. Wash, rinse, repeat. Every single night. I was fighting as hard as I could during the day to keep afloat. I'd go to work, take a nap, go to the gym, take a nap. All while feeling like I could drop out asleep at any moment. Functioning was hard, but I made it work somehow. I think it was less stubbornness and more denial that kept me moving.
Until the afternoon of September 26th, 2012. I'll always remember because it was the last Wednesday of September and I was terribly sad that my favorite pilates instructor wasn't going to be teaching the Wednesday classes in October. It was a normal enough sleepy day, running on caffeine and sheer will, I worked the midday shift, napped, and then hit the gym for a bit before heading home for an early bedtime. I was scheduled to come in the next morning and open at 4:30am, so my head hit the pillow at 8pm promptly.
Around 8:30 my back started aching a bit. I wondered if I was starting my period early for some reason (I get back aches, not cramps, during my menstrual cycle). Took a quick ibuprofen and laid back down to hopefully sleep.
10:30pm it was worse. The pain spread over to my sides and my gut began to hurt like someone punched me in the stomach. I'd had indigestion before, and this was not it and way worse. I tried to roll over and ignore it, but no matter how I positioned myself, it still hurt. I dragged myself into my parent's room and woke my mother up in tears. She gave me a Tums and a prescription painkiller she had leftover from an injury and helped me to the couch. I texted my coworker that I wasn't coming in the next morning, and cuddled a pillow and cried. About three hours later the pain just faded away and I drifted off to my normal broken sleep.
But the next day it came back. Then it faded away again. Then back again. Then gone. Sometimes it was just back pain, sometimes just stomach pain, sometimes both hurt and the pain wrapped around my sides and down my legs. It came if I didn't eat for a long time, it came when I ate something that wasn't dry cereal, and sometimes for no reason at all the pain came. It would hurt for anywhere from a brief 30 minutes to an agonizing 6 hours.
After a week of this I finally went to the doctor.
Much of what happened in those months, all the doctors visits, medications, and tests are a little bit fuzzy now. I'll try to go through it as cleanly and succinctly as I can, but memories are a bit scattered when you're at a different doctor 's office three times a week and changing medication almost as often, on top of being in intense pain and still having to go into work most days (thanks minimum-wage service job, for being shit about sick days and just leaving me to cry in the back room doing dishes).
The first guess diagnosis was that my lack of proper sleep was causing low serotonin, which can cause stomach pain due to the fact a lot (or most?) of serotonin is in the digestive tract. So I was started on an antidepressant that also doubled as a sleep aid. It had no effect on my pain or my broken sleep cycles. Tried a different antidepressant, also didn't work. Generic sleep aid was also no dice for getting me to sleep completely. Diagnosis: Sleep-maintenance insomnia. Medications: Rotating sleep medications/SSRIs, heavy painkillers, muscle relaxers.
I was referred to a gastroenterologist for my stomach pain, to rule out Crohns disease and ulcerative colitis. After a brief awkward discussion with a very attractive doctor about my bathroom habits, I was sent down for x-rays. Diagnosis: IBS (c-type) exacerbated by a redundant colon. Medications: Dicyclomine (anti-spasmodic), Miralax.
The gastroenterologist claimed that my IBS was not causing my back pain or sleep issues, and the prescribed medications only somewhat dulled the stomach pain. I started changing my diet to cut out foods believed to worsen IBS in most people. Sometimes it worked, but not all the time. I was still in pain, and I didn't have any real answers yet.
It was the middle of November now. I had managed to get my hours reduced at work to a mere 20 per week, and was often begging people to take those shifts from me while I dumped heavy painkillers down my throat and curled up on a heating pad. My mother had to help me get around sometimes because the pain was too much to focus. I took hot baths multiple times a day because it helped with the pain that ran down my back, across my hips and sides, and over my stomach all at the same time. I cried in the bath tub one night that I wanted to die, that I felt like my body betrayed me, and I know my mother cried too.
I was scheduled for an MRI to see if I had a slipped disk or something similar in my lower spine where the pain was. In case I did have a slipped disk, and since the appointment was over a week away, my doctor started me on prednisone, a corticosteroid. Prednisone acts as an immunosuppressant, has fairly strong side effects, and a very specific dosing pattern that tapers the individual off slowly.
Two days into the prednisone cycle and my pain had substantially decreased to a low roar. I was still taking heavy painkillers daily, but I could handle a short shift working the cash register (while sitting, I had a doctor's note for a stool). My doctor informed me that just because the pain was lessened, doesn't mean I was better, as the prednisone was just masking the issue rather than curing it at the moment.
Several thousand dollars and an MRI later, I had my results: my spine was fine. No slipped disk, no damage in the area they scanned, it was all perfectly normal for a woman in her early 20's.
By the end of the second prednisone cycle (yep, did it twice), my pain had been significantly reduced and I was attempting to get back to a normal life. I had no answers, no known cause. My IBS was being managed somewhat well on a very strict diet, and I still took prescription painkillers and muscle relaxers daily, just at a lower dose than I used to. During this whole ordeal I had switched primary doctors, gotten second opinions, gone to multiple specialists, and I was tired of it all. And I was still tired of not sleeping more than 2hrs at a time. Yeah, the sleep thing. It still hadn't been fixed.
January 2013 I was referred to a Sleep Centre for testing. It is like a doctor's office masquerading as a hotel. I was hooked up to wires and electrodes all over my head and body, measuring my neurological patterns, breathing, movement, and vital signs. Then I was shown to a small bedroom and told to somehow sleep with all the wires and crap stuck all over me. After the overnight test, I was kept there for the next day to run a secondary test consisting of multiple naps. I wasn't given any information after I had completed both sleep studies, just sent home and told to wait for a call to schedule a meeting with the doctor to get my results (if I had any).
I can't remember exactly how much time passed between taking the sleep study and getting my results, but I remember it feeling like eternity. I'd guess it was probably around a week or two later when I finally was able to go meet with the doctor and get my results. My firm, real results, guided by hard data gained from neurological readings and all that jazz. No, I wasn't hopeful. I expected another inconclusive result.
What was causing my inability to stay asleep was a neurological disorder called narcolepsy, where your brain in unable to complete a proper sleep cycle. My sleep cycle was, literally, broken. My brain would do REM at improper times and only went into deep sleep infrequently. Without the correct order and balancing of sleep stages, the sleep that I actually got was neurologically useless. I slept, but I didn't rest.
Medications: Venlafaxine (for REM consolidation), Nuvigil (stimulant)
I'll stop here for Part I. Sadly, there's more.