When working in traditional offices, I struggled with “sick days.”
I didn’t often get colds or flus. I just dealt with my narcolepsy with cataplexy, which was fairly stable and “well-managed” by the time I took these jobs.
Yet narcolepsy was still with me every day, to varying degrees — from minor annoyance to extreme discomfort — sprinkled over moments, minutes or hours.
I rarely felt fully “healthy” OR fully “sick” — like bed-ridden, throwing up, or contagious — things deemed worthy of sick days. My more invisible and consistent adversity was hard to measure, hard to explain to a supervisor & hard to decide for myself when to say “Nope, not today.”
I eventually got better at this though and realized I didn’t need to explain myself. I could say “I’m not feeling well enough to work today,” and walk away to do some self-care. (Read here about getting a nap space.)
For the past 1.5 years, I’ve had my dream job working for Project Sleep. Now, I make my own schedule, work at my own pace and do NOT commute three hours a day across Los Angeles.
Interestingly, now that my work is my passion, taking a day off means putting off something I feel strongly about, or delaying something where I feel my “timeliness” reflects upon my leadership skills or my nonprofit’s consistency.
However, by the end of World Sleep, I was zombie-esque and feeling down. Which I realize sounds odd because I had TONS to be happy about after a successful inaugural World Narcolepsy Day & World Sleep Congress 2019 in Vancouver, Canada. However, I was so depleted & indifferent on my route home on Thursday, I recognized that I needed another full day off.
Yesterday, I unpacked and made a big batch of minestrone soup. I bought three kinds of ice cream and four bunches of flowers and eucalyptus to fill my apartment. I watched YouTube aimlessly, walked lots and lay with my legs up the wall to bring down inflammation in my ankles.
Last night, I started doing my work in my dreams! Today, I’m feeling good enough to get back to this work in reality.
I’m glad I gave my energy wave its due course. Running a non-profit organization as a person with a chronic illness has many interesting dynamics, this is just one of them. I am proud to serve in my role and believe that our organization being run by a person with a sleep condition will serve us well in the long run, so long as I remember to take breaks as needed. Somewhat like choosing to walk/run a marathon – I must be disciplined in how I pace myself for Project Sleep’s longterm success.