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Allison Echols
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CommunityMember0d09f7 Member
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All of the above...
Weddings, theatres, dinner parties, parking lots, bench seat at a restaurant. My kids graduation ceremonies (5 hrs long), public transport, parent participation days at school were a nightmare, during work breaks, the hair salon, any kind of salon… Although for me, the Cataplexy has always been much worse than the EDS. Still I experience all of the same emotions, fears, anxiety as described, from both.
What I am so struck by in this post, is the vague sense of normalcy or maybe it’s lack of significance these kind of situations invoke. If given a similar circumstance, P without N would find extremely significant (and not normal).
I am not criticizing the writer of the post at all… what I am struggling to contend with are inequities I see for other PWN and experience too often myself.
It is no exaggeration to say, I often feel compelled to normalize or minimize (for others) how challenging daily activities in life can become; like taking the city bus, to my overall sense of safety, autonomy and mental health.
This is impart because I do not want to impose upon or burden others with my ‘issues’ and a healthy dose of ‘I can do it myself attitude’ (noble not always wise). But, as time passes, more and more I feel required by society, and those closest to me to normalize my reality, or lose the relationship itself.
When daily challenges, and limitations cause a significant loss of quality of life, it is imperative that our caretakers, family, friends, take notice and react accordingly.
The longer my reality goes persistently unrecognized by friends, family, caregivers, even N Drs and specialists, the harder it becomes to reach out for help or support even in times of crisis.
Lack of understanding and empathy create isolation, insecurity and resentment.
False assumptions or negative perceptions, avoided or left unresolved create issues of trust (if you clutch your purse or sit on it, fearing you might fall asleep) some may come to believe you are neurotic, exaggerating or just trying to bring attention to yourself).
My efforts to minimize impact on those closest to me, has contributed to, rather than protected me from, their apathy and distrust.
It is understandable to me why a high percentage of PWNs end up with a trail of broken relationships and little if any meaningful support from people they can trust.
Lori.Foster Community Admin
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CommunityMember76981e Member
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Hello,, glad to be here. It was a toss up between falling asleep at John Wick 3 movie and the person I was with didn't wake me up. I have sleep apnea so let's just say my snoring is really bad...or falling asleep standing in the kitchen 2 weeks after a knee replacement. But the most embarrassing was on a blind date. It was he and I and another couple sitting at table. I was holding my coffee cup with both hands and had my elbows on the table ..I fell asleep and dropped cup. The look on his face was priceless but needless to say the re was no 2nd date!
Lori.Foster Community Admin
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CommunityMemberb35a7d Member
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Church. Everyone knows I have narcolepsy but it's still embarrassing. Falling in public. also.
Lori.Foster Community Admin
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CommunityMember2faef0 Member
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At the club (when I was younger), and while walking down the street.
Lori.Foster Community Admin
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Hi