- Narcolepsy
- Interviews
VivRR's interview
How did all start?
I fell in the bathroom hit my head on the ledge that separates the shower from the bathroom stall. Had cerebral trauma w edema and immed afterwards developed Narcolepsy w Cataplexy
Do you already have a diagnosis? How long did it take you to get it?
Accident was in 1992, clinically diagnosed in 2004 . Started testing PSG's MSLT IN 2009
For what medical specialties have you been treated? What has been the most useful specialty for your?
I've been seen in Neurology only
What has been the most useful thing for you so far?
Learning to pace myself. Not to be too hard on myself when I'm having a bad day. As much as possible. Stay away from stressful people and situations, avoid my triggers if possible.
What have been your biggest difficulties?
Access to my medication. What works is not available here. I have a neck injury , therefore keeping my pain down so as not to trigger my Narcolepsy.
How has your social and family environment reacted? Have your social or family relationships changed?
Mother very understanding and helpful.
Rest of family and friends no matter how much I've tried to explain .... well don't really care. I've gotten statements like at least you're not dying from cancer. Grrrr
What things have you stopped doing?
Driving long distances
Working full time in my completed career
What do you think about the future?
I live one day at a time just doing my best.
So far, which years have been the best years in your life? What have you done during them?
Before I had Narcolepsy , I was highly productive active life. Private office and worked in a Public Health clinic.
What would you like to do if you didn’t have your condition?
Practice, travel, drive anywhere I want.
If you had to describe your life in a sentence, what would it be?
It's been real tough; I have become a different human being. Much stronger and wiser
Finally, what advice would you give to a person in a similar situation?
Make sure you have the appropriate diagnosis and treatment. Inform yourself so you don't freak out at your symptoms but don't obsess about it, join a support group online or in person.
