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Fill in the blank: The hardest thing about living with narcolepsy is ___________.

What is the hardest thing about living with narcolepsy? Share your answers below!

  1. Financial independence!!! Poor decision making while sleep deprived and under emotional stress pretty much cost me my financial independence. I’m fortunate to have parent(s) that knew this could very well be the case in my N1 life’s journey and were financially able themselves to make it possible😀

    1. Started taking Baclofen about 8 years ago. added cannabis oil(I live in 🇨🇦)shortly after; cataplexy improvement noticed before the end of the 1st month but sleep took about 4 months. It abled me to continue working about 3/4 time for a few more years so that was good!!!

    2. I am glad you found something that is effective for you, . How interesting that the cannabis oil had so much impact. You just never know what might help. Thanks for sharing. - Lori (Team Member)

  2. No Energy

    1. Hi . I see you are new here. Welcome to the community! Lack of energy is such a common problem for people with narcolepsy. Have you talked with your doctor about it? There are medications that can help. Here is an article about the spoon theory and energy: I thought you might find it interesting and helpful when you need to explain your lack of energy to others. Wishing you the best. - Lori (Team Member)

  3. There are two different areas i find difficult. The first is the personal difficulties. The second area is the fact that, while I'm not seeking pity, most people are utterly ignorant about this chronic disease that is downright weird. No, it's,not psychological ( although my psychiatrist saw through my bipolar symptoms ( now in full remission). and,diagnosed it) It's neurological idiot. No, I don't sleep a lot. Takes me 8 hours, to get 4 hours of sleep. Cataplexy is not epilepsy but equally scary. And so on. My own mother doesn't get it. I was diagnosed 25 years ago. I don't know how to explain that this is my main disability. Tomorrow might be an awful day I spend with brain fog. Or maybe it'll be a great day. Can't make plans.

    1. I wish you had more support, . especially from your mother. I am glad you found this community though. Sometimes, having a few people who understand can make a world of a difference. Do you know anyone else with narcolepsy? Here is an article from one of our advocates about the benefits of having friends with narcolepsy that might interest you: Thinking of you and sending the best of wishes your way. - Lori (Team Member)

  4. The hardest thing about living with Narcolepsy is... life.

    1. We hear you, ! How are you doing these days? Are you able to get through each day okay? Warm wishes. - Lori (Team Member)

    2. exactly

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