For so many years I fought the tiresome fight against weird diagnoses and ongoing fatigue. I know that my journey felt and looked like attention seeking, lazy, to those around me and even after the diagnoses my family still can not come to terms with the word... or the meaning or my response to the tablets.
Tonight, my thoughts race yet my mind finds it difficult to make sense of any observation...
Hi...I am a Narcoleptic... does it define me... No... does it challenge me ...Yes....do I feel like just giving up...a lot.... Do I have to explain myself to an unaware world, where expectations weigh much more than kindness... No... do I believe my Dr - I battle... yet the meds work..
Those are about the only words I could bring to myself after the diagnoses...
I struggle...I still have very bad days... doctors can not get to the point where meds make sense to my brain... my family can not stop telling me that they also get tired... and that I will get addicted to Ritalin...I long for silence and understanding...
Between the words I am sure you can feel your own energy a...even more depleted by the external world, in the midst of a life and death struggle to function everyday... yet I know - that just by acknowledging Narcolepsy, is huge... to all of you ...I am in gratitude to be able to join this website...I read your words with respect and I honour your journeys... it is tough... it is a pain no one can explain or understand... every morning when the meds kick in... it feels like the relief after years of intense pain.
Thank you for accepting me as a member and sharing your life...
Thank you so much for your reply... words do not come easy... and when it is acknowledged like you did ...I am moved with such appreciation. The name of my journal was "My Journey - My Narcolepsy". And after I found this wonderful website I changed it ...to "My Journey with Narnia". After reading for 2 days between lapses and sleeps and naps... lol... it was such a relief to know that I am really not alone and that my experiences are real and felt by others like me too. To stay within the energy of light and positive thinking is hard but not as hard as being awake at 01h00 knowing that a day of unproductive hours awaits.... the fear of being surprised by "the Sandman" blocks my creativity. And then I found you guys... there are many support groups online, yet this one is filled with people who are to the point... say things the way they are and really support one another even if it means you have to say words which others do not want to hear... authentic ...and I just love being here...
We're glad that you're here, Janria. This community is full of kind and supportive people who will reach out to support you, especially if you reach out to them. Join in the conversations or even start your own!
A large part of what keeps this place "real" and safe is the watchful eyes and hard work of moderators Elodie and Carol. Their names are posted on the MAIN page of the community, and they do a terrific job. It shows, doesn't it?
