Being on the other side

Wow, I've been out of work for 3 months now. I have suffered from narcolepsy for almost 10 years, but this year for some reason, my body decided to start having cataplexy episodes. It's been a long, long road, but this post is about describing my experience as a patient on my own unit.

At the beginning of May, I arrived at work like normal for the first of 3 in-a-row night shifts. I got report on my patients and stood up to go meet them. After taking 3 steps away from the nurse's station, an overwhelming wave of paralysis swept over me, and I crumpled to the ground like a rag doll. There were no warning signs, no clear triggers. The nurse who had just given me report cried out in shock.

"Oh my gosh, what is this?? What happened?" Jenny asked. Unfortunately, this wasn't totally new. It had happened two other times before this, but both times at home. Within seconds, I regained full strength and sat up, feeling multiple pairs of eyes on me as I covered my face in shame. Jenny grabbed a mobile vitals machine and checked my vitals. Nothing abnormal. I admitted this had happened before, but it had been a while, and I thought it was just low blood sugar or something and never got it checked out. I started to stand up, and after taking a step towards a chair, I collapsed again the same way. Hitting the floor hard, I could hear shocked gasps around me as Jenny told me not to try getting up again. She ran for the charge nurse and a wheelchair while I waited on the floor in shame. When she returned, they helped me to a wheelchair and my charge nurse took me downstairs to the ER.

In the ER, they checked my blood sugar, vitals, EKG, labs, and more. When transferring from the wheelchair to the bed, I collapsed again, although others were around to catch me. The ER was chaotic that night. I ended up being boarded in the hallway for hours while waiting for a room. When I finally got a room, I realized how much pain I was in. I had injured myself in the first fall, so they put me in a C-collar, drugged me up with morphine, and sent me to get a CT scan of my neck and a brain MRI. My charge nurse returned to our unit but held a room in case I needed to be admitted. A couple hours later, they tried to get me up again to see if I could walk, and upon collapsing a fourth time, I was ordered to be admitted. They gave me the choice of whether or not to stay on my own unit, since they wanted me to be on a cardiac monitor, and my unit is a cardiac unit.

I know what you're thinking. Why would you want to be a patient on your own unit?? Honestly, my boyfriend discouraged me from going there, and I hesitated for a minute. But I've been floated around this hospital. Most units I have floated to do not reach the same high standards of care that I see on my unit. I was scared and embarrassed, but I'm also a creature of habit. I hate change, I hate being in unfamiliar places, and I thrive where I'm comfortable. While I knew I risked it being a little weird, I felt confident that I would be most comfortable with familiar faces in a familiar location. So I opted to stay on my home unit, and I don't regret it at all. But it was definitely... Interesting!

They wheeled me up to my home unit around 6am. It was embarrassing to be rolled past my coworkers like that, but that was honestly the hardest part. Once I was in the privacy of my room, I felt like I was just another patient. And boy let me tell you, is it strange to be the one in the bed! I got a lovely taste of everything our patients have to go through on a daily basis. Bloods draws at 4am, bed alarms, crappy hospital food, vitals every 4 hours, countless doctors visiting, working with physical therapy, getting gross and dirty while not allowed to shower (due to the heart monitor), and worst of all, hours and hours of sheer, brutal, relentless boredom. I ended up spending a lot of time just sleeping, and I was shocked to learn it only took 3 days in a hospital bed to lose a lot of my strength.

The one thing I did notice that I thought was funny was no one seemed to want to do a shift assessment on me! Not that I mind, but when I'm working at the bedside, I have to do a head-to-toe assessment of each patient once a shift and document it. You know, like listening to the heart and lungs, checking pulses, skin assessments, etc. I don't think anyone did an assessment on me once, mainly because I'm an otherwise healthy young person. So I don't blame them.

My parents visited me each day, but at first no coworkers did, which was a little surprising to me and made me a little sad. So I asked one of my nurses why it seemed like people were avoiding me when I was in the halls with PT and not stopping by. I wondered if my presence had made people uncomfortable. Turns out, the charge nurse from the first night had told everyone to "mind their own business" and leave me in peace. When she came to work that night, I told her to tell people it is fine to come say hi, because the boredom is sooooo real. From then on, a bunch of coworkers started visiting to talk to me and see how I was doing, which was really a big mood-booster for me.

My coworkers were all so great at giving me privacy and allowing me as much autonomy as was safe. My brain MRI came back showing a pituitary microadenoma (benign brain tumor), so I had to undergo many more tests, but ultimately, they decided it was not the cause of the collapses. I was discharged after 4 days with instructions to follow-up with various specialists. What followed was 3 months of agony in which I underwent every test imaginable. My neurologists did not think it was likely I had cataplexy, since I lacked the typical emotional triggers. But ultimately, they settled on it being an "atypical" presentation of cataplexy. I had several more collapses at home and at the store, but eventually was started on Wakix, my miracle drug. It has significantly helped me, and I'm now waiting for paperwork to come through to get back to work. Not being able to care for patients for 3 months has been challenging for my self-image. Being a nurse is everything to me, and I truly cannot wait to get back to the bedside. But more importantly, I have a new appreciation of what we put our patients through. I have been hospitalized before, but not since becoming a nurse. Seeing everything from the patient's perspective was interesting to say the least, but I'm extremely grateful for the great care I received.

Moral of the story: Don't be afraid to be a patient for your coworkers. While many units today have deeply toxic work environments that would be better to avoid, if you feel comfortable with your coworkers, there's no shame in being the patient. But honestly, this is entirely up to personal preference and based on the unit culture.