Allison Echols
How can loved ones make holiday gatherings more comfortable and supportive for someone with narcolepsy? What strategies and tips do you have for communicating your needs with family and friends?
Twilight Sleep Member
Yes, for the most part, I feel as though my family and friends do try to understand.
However; because they don't live with narcolepsy, I find I often have to re-explain symptoms and make sure to bring up any accomodations I will need far in advance and may need to gently remind them.
I'm lucky that those around me are understanding and will try to accommodate both me and my partner, since we are both narcoleptic!
Lori.Foster Community Admin
I am glad you appreciate their efforts to understand,
Twilight Sleep Member
1. Wear a well-fitting N95 everywhere (including public outdoors) for at least two weeks before we gather. Loss of orexin is largely caused by neuroimmune disorder, and SARS-CoV will strongly affect anyone with narcolepsy. Keep us all safe, or we can't see each other!
2. Make sure anywhere we gather has a separate room (preferably dark & quiet but obviously we will sleep in any conditions) with a comfortable couch or bed we may nap in; even medicated, we are prone to sleep attacks.
3. Please don't gossip about or poke fun at how tired we are especially if we fall asleep.
4. Understand that if we experience cataplexy, it's because we're having a great time!! Strong positive emotions are a big trigger for these attacks.
Lori.Foster Community Admin
This is such a great list,
Tatiana Corbitt Member