Friday, December 27

We're Still Here

About three and a half years ago, I was desperate. I had been existing with my husband's recently diagnosed illness, but just barely. We certainly weren't surviving, much less thriving. Actually, we were barely making it.

So I hopped online to find... something. And I did. I found lots of information that was quite beneficial and informative. Lots of clinical information, various research analyses, and even personal experiences. But the personal experiences were what appealed to me the most. Specifically, I longed for stories of other people who had spouses with Narcolepsy and Cataplexy. I wanted real life input on coping day to day.

I couldn't seem to find anything, so I decided to vent instead. That was my motivation. I wanted a place to spill my I'm-sick-of-Narcolepsy guts. When I wrote my first post, it was such a relief to say what I was feeling about Narcolepsy! In fact, this blog was private initially. But I wondered if there was anyone - just one - person who would take comfort in knowing that they weren't alone. So I made it a public blog instead. I was amazed - and touched - by the response. People from all over the world told me that they could relate. Emails and blog comments poured in faster than I could reply to them. I was truly grateful for the outpouring of support.

And then I stopped writing.

A little more than a year ago, my husband quit his job. As if that weren't stressful enough, I became very ill and extremely fatigued (turned out it was anemia). This blog was pushed to the back burner until my health improved. By the time I felt better, though, I wondered if anyone was even reading this blog anymore. Again, I was amazed to see all of the messages and comments you've left me! As I was reading some of them aloud to my husband, I choked up. There are so many of us who just don't know what to do. We have to encourage one another, laugh with one another, give virtual hugs and good advice...

My husband and I are still here, plugging away at staying happily married despite the trials of a disease that just doesn't go away. Thank you for motivating me to keep blogging.

From Wikia.


  1. Thank you so much for sharing. I will be a regular to this blog! My husband was just diagnosed with Narc. w/o cat. at the ripe age of 23. im scared and angry and sad and desperate. looking for some insight! thank you again!!

  2. I just found this blog and can't wait to share it with my husband! I was finally diagnosed last week with narcolepsy with cataplexy and have been looking for some resources to help my husband understand it better. I can't stop reading your blog. Please keep writing. ;)

  3. My fiance is narcoleptic and I'm so glad I found this. It really sheds light on the little tips and educates about the disease.

  4. Thank YOU! I'm so glad you're still writing. It's easy for us to look up the clinical definition of what we're dealing with, but that doesn't do justice in describing what it is like to live LIFE with it. So your experience, strength & hope is very much appreciated! I'm a 31-yr old narcoleptic, working & living alone and I refer those who are close to me to your blog in order to help them understand what I'm dealing with and to help them understand what THEY are dealing with when they deal with ME! So thank you!!

  5. I'm so thankful you are back. I hope you are feeling better! My husband is going through a rough patch...just over 30 years old. Guess now is when they say it peaks....and it has been bad. I often say I wish I could find a support group for the spouses of narcoleptics . We need help too! I'm thankful for the time you take out of your day to sit and keep this blog going. I often have thought of it and wished you were still writing. Glad things are looking up amd that you are back!