- Narcolepsy
- Interviews
nicolewashere's interview
How did all start?
Starting around age 10, presumably around the time I became ill with the flu, my family began becoming concerned of my recent bouts of excessive sleepiness. I would come home from school and sleep for hours, and still be able to go to bed and sleep all throughout the night.
Do you already have a diagnosis? How long did it take you to get it?
No. My mother began presenting her concerns to my pediatrician when I was 11 years old. This continued, with my own complaints until I was in my early twenties. After having a scary drop fall, seemingly out of nowhere, I began researching my symptoms. Once I was convinced I had Narcolepsy with Cataplexy, I arranged an appointment with a local Sleep Clinic. I was officially diagnosed July 2017, at 22 years old.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Sleep medicine.
What has been the most useful thing for you so far?
Xyrem, immediate release stimulants for sleep attacks, dietary changes, physical activity, and sleep hygiene improvements. I'm still working on building routines, that one hasn't been so easy.
What have been your biggest difficulties?
Creating routines and sticking with them. I'm the world's best procrastinator, in the worst kind of way. In the past, meeting deadlines and staying on top of school work was incredibly difficult. My social and speaking skills have seemingly regressed as my condition has progressed. Especially with the addition of cataplexy medication, which makes speaking up and connecting with others very difficult at times. Additionally, excessive dreaming has created a lot of stress, anxiety, and exhaustion in my life.
How has your social and family environment reacted? Have your social or family relationships changed?
My social life is very limited, these days. I am trying to improve this aspect of my life. As far as family goes, they have insisted that something was wrong far before I had even noticed my symptoms. My immediate family has been very understanding and supportive.
What things have you stopped doing?
I've had to stop drinking as much, which has been great for my body and bank account. I also had to give up my goal of thru-hiking, as I enjoy the benefits of Xyrem too much to give it up long term. I loved the idea of traveling, but I cannot do such things as often as I'd like, due to having Narcolepsy. I also avoid late nights if at all possible.
What do you think about the future?
I am very optimistic for the future! My treatment has completely turned my life around! I am now returning to school (third time's a charm!), and I'm looking forward to finally working towards a degree, without all of the extreme Narcolepsy-related issues I experienced in previous attempts. I plan to live life to the fullest and never take my abilities for granted. To be honest, I do worry about losing insurance coverage, a long-term partner, starting a family, and maintaining employment in the future - but I will deal with those worries when they present themselves.
So far, which years have been the best years in your life? What have you done during them?
The best years have also been my worst. For the last seven years, I have been proudly working as a professional Cosmetologist. I love what I do, and I am so thankful to have chosen a career that has accommodated my condition. I've discoverered a passion for helping other's feel their best, creating memorable experiences, and building personal connections. I have also found the things that make me feel better and be my best self; appreciating nature, hiking, physical activity, nutrition, and self-reflection.
What would you like to do if you didn’t have your condition?
Hike the Appalachian Trail start to finish. Maybe I'd travel often and not depend on having someone to travel with me.
If you had to describe your life in a sentence, what would it be?
Living the dream, trying to avoid the nightmares.
Finally, what advice would you give to a person in a similar situation?
Be your own advocate. Educate yourself on your condition, so that you can be your best advocate and educate others in the process.
