I really beat myself up over dropping my phones and breaking them. So I call it the cataplexy tax. Every cell phone I've ever owned, I have dropped. Narcolepsy type one is a rare neurological disorder that affects your wake and sleep cycles. My narcolepsy type one comes with something called brain fog. The way I would describe it would be like a hazy feeling.

Not feeling totally awake. Not feeling 100% aware. Kind of living in a daze. My name is Casey. I have narcolepsy type one. If I had to guess when my symptoms of narcolepsy type one started, I would say I was probably 13 or 14. I was always tired or sleepy during the day, but I was always told it was just contributed to me being a teenager.

I was diagnosed when I was 17 years old, but I was never told that I was diagnosed. I finally found out about it when I was 32. I was putting together a medical record book for my doctors. I stumbled across the word narcolepsy. That was a pretty big surprise. At least now I had a word to describe my feelings.

So, orexin is in charge of your sleep wake cycles. It's a neuropeptide. That's what people with narcolepsy type one with cataplexy are deficient in. Even though I do take medications, I still experience excessive daytime sleepiness where most days I have to take a nap at some point, I  still experience just that sleepiness feeling every day. It feels like somebody could tell me something, and unless I have it written down, I'm not gonna remember what they said.

Having a visual cue of being able to see what I need to do so I can stay on track. I also take cold plunges and ice baths, cold water washing my face during the day to kind of help wake me up. But if I feel a migraine coming on, that's usually my trigger and it tells me that I need to go take a nap.

I was accused of being an alcoholic. That's why they thought I could not wake up in the mornings. I felt a lot of shame from all the jobs that I had lost. My family shamed me about it. Everybody kept telling me, why can't you just wake up in the mornings? But nobody actually knew how hard I was trying. After I found my diagnosis of narcolepsy type one with cataplexy, I went online and I had started attending these support group meetings.

It's good to see everybody again this week. I was listening to these stories and it felt like they were talking about my life. It really gave me a sense of belonging, and It finally felt like I found my community and a place that I actually belonged in. Being on my feet and being able to walk around and be outside and get some fresh air and the blood flowing always usually helps.

Facilitating group meetings makes me very happy when people find our meetings, because it feels like we're adding another family member. Because with narcolepsy type one with cataplexy, you absolutely need a support system. And having people that understand and have the same lived and shared experiences is an invaluable asset. Narcolepsy type one has taken everything from me and now I'm rebuilding.

I've been homeless. I've lived on the street. I'm currently on a friend's couch right now. You know, my goals are to find a job or get back into school and gain my independence back. Giving up is not an option. Even though there's been a lot of days where you think about it. Narcolepsy is incredibly difficult to live with. I was in a really deep, dark place for a long time, and taking the first step by going to the support group meetings was a huge step for me.

It's helped me find a great sense of support. I can't imagine my life without it anymore.