My Personal Awareness Celebration
This month I celebrate my birthday, but not only do I celebrate the day my mother presented me to the world, it also brings me to a new level of personal awareness. Every year I will gain 1 more year with the knowledge I have narcolepsy and all that goes with it.
World Narcolepsy Awareness Day happens on the fall equinox and, concurrently, my birthday.
Notable awareness days
It is strangely ironic that World Narcolepsy Awareness Day occurs at this time, though events for awareness occur year-round. Sleep Disorder Awareness Week can be found around June 1st to 7th, and March is National Sleep Awareness Month. Narcolepsy is classified as a rare disease and can also be included for the month of February.
I can tell you that these times are critical regarding awareness. A few years ago, I had no idea that my life would turn upside down. It wasn’t so much a shock but a convalescence of many life events in the span of a few months.
I was tired all the time
My diagnosis of narcolepsy was the least of my worries initially. I was extremely tired all the time. Even a CPAP for sleep apnea did nothing to put a dent in the sleep deficit that spanned most of my life. Yet, I still managed to take care of myself and my children. Just barely, though.
Co-parenting helped a lot because I was just too tired to manage everyone’s stuff. It worked, but sometimes it’s hard to forgive ourselves for a medical condition unknown at the time, but found out eventually. Should have known is always what we tell ourselves, but we couldn’t have known. No one knows everything, or at least I haven’t found that person yet.
A series of stressful life events and cataplexy
I changed jobs, moved 500 miles, got a divorce, separated my children and family, sold my condo, rented a home, moved other family in with me, moved into a hotel (after the rental home was not purchased due to maintenance issues), dealt with family medical issues, moved other family out, bought a home, moved into the home and dealt with damage/theft.
This was just a 4 to 5 month period at the same time as my narcolepsy diagnosis. I had minor cataplexy events throughout my life, but it became obvious when dealing with the stress all at once.
For months, I was worried that I would lose everything due to narcolepsy with cataplexy. The stress caused work-related issues that required a request for accommodations.
Doctors are not the only ones with answers
A few years ago, I was informed I had narcolepsy, yet still uninformed. It took me another 1 ½ years to learn that doctors were not the only ones knowledgeable on medical conditions. Though I knew about patient advocacy and have a good medical, scientific background, I had never studied narcolepsy.
Unfortunately, I spent a bit of time letting doctors decide the path forward and pave the way than really becoming self-aware about my own condition and treatment options. Then, I whimsically signed up for a Wake Up Narcolepsy (WUN) seminar. That became the turning point.
Joining a narcolepsy support group
I contacted the organizer and joined a WUN support group. The knowledge and level of awareness among individuals with narcolepsy was more useful in that group than the 10 to 15-minute appointment with a medical specialist.
Within a few months, I read more journal articles and discussed almost every topic I could think of, but I learn more every day. I appreciate the perspective these groups have given me as the truth of awareness increases your chances of finding the right treatment plan or best possible plan for yourself.
Let's celebrate advocacy and awareness!
So let’s celebrate these events to the fullest. Each year, this time is special for me. Not just because I’m another year older but that I can help spread awareness of a rare sleep disorder that impacts me and so many.
Advocacy and awareness create the space for improved diagnosis time, better treatment options, and overall enhances a person’s quality of life. Celebrate with me and help spread the awareness.
Are you celebrating World Narcolepsy Day? Do awareness days, weeks, or months have any special meaning to you? Share with us in the comments below!
Do any of your family and/or friends also have narcolepsy?