My wife read my wall blog. While she had a good chuckle and significant sympathy, she also asked if writing the blog helped me with the emotions. I think I said, "yes," before I actually opened my mouth. I am astounded how much blogging has helped me. I shouldn't be surprised of course. As a writer and a writing teacher, I know that my students and I always feel relief. Expression of any kind is glorious, but it gets harder to remember that when one turns the focus internally.
I also love that people are reading this. Whether anyone comments or not, here or in person, the fact that friends and strangers find something in my words lifts my confidence and coping skills. Even a day like yesterday diminishes in terms of self-deprecation when I recognize that it will make a tremendous blog post - honest and humorous. More than that, though, is the sense that I am doing a greater good. By sharing my story I hope I am helping other narcoleptics and their friends and families. Whether it allows someone to feel less insane, or lets a person see that a sibling or friend faces true struggles and is not "simply lazy," I want to believe that I am helping. And, that too raises my own strength.
I know that reading the stories of other narcoleptics on Facebook and MySpace has been an incredible boon for me. Next weekend (wow, only five days away) I finally get to attend MOONS, a Minnesota based narcolepsy group. I missed an early meeting for a friend's wedding. It was absolutely the right decision, but I am now bursting to trade stories with other folks in a face to face setting. It will be stunning!
Having said that, I am also continuing my online quest to find more narcolepsy blogs and videos. I have listed a few other blogs on mine, but haven't seen any posts on them recently. I still hope I can find a few other folks like me - essentially people who won't shut up. I would LOVE to read their stories, whatever they are. My latest find are the videos. A dear friend sent me the first one, which I finally watched last night (sorry, mistawulf). The video was made by TogetherforPeace. I even found two others - discuscatcher and sofiarune. All three videos are great, and each is drastically different. More than anything, I appreciate the ways that these videos demonstrate the diversity of this disease. Each videographer has unique story, and yet all are rooted in this wacky condition. Eventually, I will figure out how to post their links on my blog - since they are simply trying to do what I am doing - processing the illness and hoping others will understand.
Oh, if anyone is wondering, my hand is still swollen. I might ice it some today, but I do find merit in letting the pain (which is not bad) remind me of my foolishness and my need to be honest mentally, emotionally and physically.
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2 comments:
hello, i just wanted to commend your efforts to work through this sleep disorder. do you know much about cataplexy? that is the number one symptom that i have that doesn't seem to have much research/information done on it. i have been able to manage my other sleep symptoms to a comfortable level without having to take medications, also. i had a sleep specialist tell me that medications were the ONLY way to go, but i was and still am determined to find a more holistic approach to this sleep problem. one of the greatest environmental changes i made that has allowed me to sleep more soundly throughout the night is to keep the dog outside of the bedroom, turn on white noise as soon as i go to bed (if you live in a city, it is incredible the amount of noise that can elicit sleep paralysis, and wakefulness. cars, sirens, trains, neighbors, etc.) and i also bought cheap white vinyl from the fabric store and keep my bedroom windows covered so even in the day my bedroom is pitch black. just changing these simple things in my own environment has helped my symptoms by probably 75%. i also take 1-2 10min or 20min naps a day and i try to take them BEFORE i even feel sleepy. also, instead of medication, i medicate myself with coffee. for me, it feels a little more natural than hard core perscriptions with side effects. i only need one cup in the morning. anyway, i found your blog because i have one too, but mine is about going without white refined sugar for a year. one of my reasons for doing this was/is to see if going without sugar helped to decrease my sleepy symptoms. the coolest thing i've noticed is that i don't have sugar highs and then crashes where i absolutely have to find a bed, quick. i am more awake, alert, and even-keeled throughout my day and i actually get to witness others crashing from sugar. anyway, just curious if you have had any cataplexic symptoms. hopefully not. they are the worst! i am constantly working on different ways to deal/treat this awful symptom.
:) Yay! Blogging helps! I know how you feel about that--it makes me feel a whole lot better too.
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