This post is part of the Epilepsy Blog Relay™. Follow along all month!
I kicked off 2019 with an 8-day stay in the University of Virginia’s epilepsy monitoring unit (EMU) in hopes of capturing a few seizures on a video EEG. The EMU stay is part of the evaluation I’m going through to see if I’m an epilepsy surgical candidate.
When the EMU stay was first discussed at my doctor’s appointment, I wondered how I could fit it into my schedule with work, etc. Also, the biggest question I had when it was scheduled: How will I keep myself busy for 8 days in the hospital?
No seriously, how will I keep myself busy for 8 days in the hospital?
I talked with some friends who had done EMU stays and they offered great advice.
- Bring a good blanket and your own pillows.
- Don’t forget some comfy slippers.
- Find shows to binge watch.
- Only pack button down shirts since the EEG leads get in the way.
Their tips were great and helped make the stay feel as homey as possible for my fiancé and me. During the stay, I kept a journal to keep track of my tips, here are some:
- Make a snack drawer with your favorites treats.
- A 1000-piece puzzle, books, and a few games kept us busy.
- If you’re there for awhile, ask if the hospital has laundry services.
- Keep a journal, since it may be tough to remember discussions with the doctors.
- If you don’t have a rescue medication, make sure to have the doctor prescribe one before you leave.
The hardest parts
There were two hard parts for me. The first was when my fall risk increased once I was off my medicines, since I started as a level 1, which meant I could move around on my own. Once my meds were off, I was primarily stuck in bed and needed my fiancé’s help with everything.
The second was how I felt off my medicines. I didn’t know what to expect, since I’ve been on meds in some form since 2006. As I tapered of them, I experienced side effects and when I was complete off them my brain felt like mush, I didn’t feel like myself. After I was back on my medicines, I was super lethargic for about a week. Be patient with yourself as it does take some time to bounce back and feel like yourself again.
The best part!
One last piece of advice, ask the nurses if the hospital has volunteer dogs that can come to the room. I know the surprise visit I had from Wali, a golden retriever and one of UVA’s volunteer dogs, really lifted my spirits. And don’t worry, the glue will come out of your hair, it just takes a few washes!
Alison Kukla, MPH, is a tested leader with demonstrated success in coalition building, campaign management, and engagement strategy development in a variety of fields at the local, state, and federal level. Alison is a public health professional with a Master of Public Health in prevention science from Rollins School of Public Health, Emory University. Alison is also a Person with Epilepsy, an Epilepsy Advocate and formerly staff in the Obama White House and EPA.