Tags: Blogathon, Diagnosis, Disability, DSPS, narcolepsy
Julie Flygare, the author of Wide Awake and Dreaming: A Memoir of Narcolepsy, is hosting «Dear Diagnosis», a blogathon where she invites «all narcolepsy and chronic disease bloggers to write a letter to yourself on your diagnosis day.” To date, all responses are from narcolepsy bloggers. She needs one from another chronic disease blogger, I think.
Dear me in April 2004,
Elation! Finally a doctor who recognizes that you are not (just) lazy and inconsiderate. He understands so well that he asks about things you never realized were connected to your sleep problems. He asserts that you have a valid condition and even has a name for it: Delayed Sleep Phase Syndrome, which in years to come will be “uprated” to Delayed Sleep Phase Disorder.
Yes, you are on a high which will last several months, in spite of the fact that the treatment he recommends doesn’t really work. Thanking the heavens for the Internett, you will research DSPS and discover that its been known (but only to chronobiologists, apparently) for over 20 years. You will fill a couple of ring binders with scientific studies, learning to read and understand them along the way.
That overnight sleep study at the hospital in the early ‘90s that came up with “not narcolepsy” as a diagnosis should have rung a bell for that neurologist! Curses on him.
It will, unfortunately, take years for you to stop blaming it all on your own lack of self-discipline and to (re)gain some self-esteem. You will still have to make sincere apologies when you are late for work and miss appointments.
You will foolishly refuse to accept 100% disability when it is offered, going along with your GP who feels you should at least keep working part-time for social reasons. So you’ll be 40% disabled for a while, then 60%. Retirement age comes as a great relief.
You will actually start a blog about DSPS, partly for yourself but also in hopes of helping anyone who stumbles upon it. You’ll hear from thankful people; it’s great to be appreciated! You’ll find a wonderful support group, “niteowl”, online where intelligent and helpful people help each other learn. You’ll find other fora where you can help people. You’ll eventually start a wiki, then be a part of starting a non-profit, Circadian Sleep Disorders Network, to provide support, inform and try to spread awareness.
Your sleep specialist (yes, the same one as today) will tell you: “Now you can hang out a sign and start taking patients.” He’s joking, of course, but it’s a nice compliment.
In sum, your life will continue to center in large part around your sleep problems, as it always has, but increasingly in a positive way!
Me in 2013
Next post: 67. ~coming soon~