Dec 15 2023
Narcolepsy Perspectives – A Closer Look: Rorey’s Day in the Life

By Cara Weaver

Welcome back to Narcolepsy Perspectives: A blog about anything & everything Narcolepsy!

We’ve been taking a closer look at some of the people from our first edition and their stories, and we’d like to continue that today with Rorey Smith! You may remember Rorey’s advice from that edition where he talked about the importance of online support groups and how they’ve had an impact on his life. Wake Up Narcolepsy currently has nine weekly online support groups, including one dedicated to comorbidities that is facilitated by Rorey. Learn more here. 

After a long road of tests and specialists, Rorey was diagnosed with Narcolepsy Type 2 in January of 2021. He is going to take us through a typical day in his life, giving a closer look into the complexities of his conditions and what is going through his mind during the day.

“I wake up in the morning, and before I get out of bed, I do 20 minutes of bright light therapy wearing my luminette glasses. 

Then I have to take my series of medications, including my narcolepsy medications, spacing them out to get me through my work day. Then I put on my smartvest for my lung issues as a result of Sjogren’s for 15 minutes. Yes, another autoimmune condition.

I am finally ready to get around for work. Oh darn, I have a 9:00 am meeting, and I haven’t taken a shower or eaten breakfast – not to mention – it’s actually 9:03 am. I log into the virtual meeting, mute myself so I can go make some toast and warm up my oatmeal. I sit back down for the meeting, forgetting about my food until about 30 minutes later. My food is cold, but I need to eat it anyway because the next meeting has started. 

My primary care doctor calls during my work call. He needs to reschedule my appointment. I hang up and focus on the meeting. Rorey, they say, what is your recommendation? Darn, I missed part of the discussion. Call ends. 

Good, I can go take my shower now.

Nope.

CVS is calling to tell me that my 7 prescriptions are ready but my sunosi is on hold because it’s too early to order even though I am completely out of them.

Darn it, it’s infusion day for my third autoimmune condition that also causes fatigue: chronic inflammatory demyelinating polyneuropathy (CIDP). It’s a fancy name that basically means I hurt all over, but I carry on. 

I need to get my supplies set up because the infusion takes almost 3 hours. 

Do I finally take my shower now, eat, or finish setting up? 

I’ll set up, then take my shower, and then start the infusion while having my lunch and getting on to my next virtual meeting.

My work day finally ends. 

I look at my email and text a few family and friends, but not before I have fallen asleep at my work desk, waking up an hour or two later. 

Sitting upright at my desk as if I am still working. Great! 

I still need to have dinner, and one of my favorite reality shows is coming on. But I still have an hour left on my infusion because I fell asleep and didn’t put in the next tube during that time. Ok, I’ll just eat while it’s finishing up. All done, and my show has started.

I still need to do my second smartvest treatment for my lungs as well as my compression outfit for lymphedema. I choose my compression outfit because I can do that while watching tv. It takes one hour to do the upper and lower body compression. 

I am so tired by now, and this only makes it worse. I fall asleep and miss most of my show. I wake up and finish the compression therapy, and clean up the kitchen. 

I really want to go to bed, but I still have the smartvest treatment. I get myself up to have my chest pounded. 

Now insomnia has set in, so I can’t go to sleep. 

I sit down on the couch, talk to my sister, hang up, and unknowingly fall asleep on the couch. 

I wake up to go to bed at 3:00 am.”

It is important to remember that Narcolepsy looks different for everyone, which is why it is crucial to listen to stories without assuming you know what happens next. Each person with Narcolepsy goes through different challenges, setbacks and successes with their disorder and the only way to learn is to hear what they’re saying. 

Although work is a big challenge for Rorey, he expressed that it is also a large comfort to him. 

“Work reminds me that I am still able to contribute my skills and help others. Narcolepsy has not robbed me of my gifts even when it tries to rip off the vibrant wrapping paper.”

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