- Narcolepsy
- Interviews
Ali's interview
How did all start?
I can trace my symptoms back to age 16 shortly after a bad case of mono, but doctors insisted it was depression or just part of being a teenager.
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed in 2007 after my partner at the time suggested I get tested for sleep apnea (which I also have a mild case of)
For what medical specialties have you been treated? What has been the most useful specialty for your?
I'm mostly unmedicated because I don't handle stimulants well. I'm working on getting Xyrem. I drink a moderate amount of caffeine & occasionally take modafinil for days when I have a lot of meetings.
What has been the most useful thing for you so far?
Sleep hygiene, disability accommodations at work & school, and support groups
What have been your biggest difficulties?
Medication side effects, insurance issues, feeling like I can't keep up with the rest of the world.
How has your social and family environment reacted? Have your social or family relationships changed?
I have an amazing support group, but I still struggle with not being able to stay awake through movies or late night shows & muscle pain from lack of restful sleep.
What things have you stopped doing?
I had to cut back on school & hours at work. I stopped making promises to friends about activities and events. I had to stop powerlifting & running.
What do you think about the future?
I'm optimistic. I'm grateful for the support I have. I try not to focus on what frustrates me because things can always be worse.
So far, which years have been the best years in your life? What have you done during them?
A few years ago before my symptoms got worse when I was able to be more physically active. I met my fiancé & did my first powerlifting meet.
What would you like to do if you didn’t have your condition?
Finish my bachelors degree, go back to lifting, travel, volunteer, do more freelance makeup jobs/projects
If you had to describe your life in a sentence, what would it be?
Sleepy, fun, ridiculous, cat-snuggling, nap party
Finally, what advice would you give to a person in a similar situation?
Communicate, ask for disability accommodations even if you don't think you'll need then, establish good sleep hygiene, eat healthy, connect with other people with narcolepsy, be an advocate for yourself!
