Letter From a Person Living with Narcolepsy

Letter From a Person Living with Narcolepsy

Narcolepsy, Personal Story
Dear friend, Do you remember that time we had big plans to do something amazing on the weekend? I told you at the last minute that I really wanted to go but I just couldn’t do it.  Well, I remember it. Because it was hard for me to make the decision to take care of myself instead of going to do something fun that I was really looking forward to. What did I do that day? Instead, I spent the day making sure I had healthy food lined up for the week. As part of my self-care routine, I took a few short controlled naps. Focused on physical and mental health, I drank a gallon of water and meditated. I arranged my calendar for the week so I would not…
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Tell me how you take time to love yourself!

Tell me how you take time to love yourself!

Narcolepsy
Write down the five things that are most important to you in the whole world. I'll wait a moment while you do that…. If you are anything like me, your list may include values like independence or peace; it may consist of goals or aspirations, or people like your family or friends. But tell me, are YOU on that list? (more…)
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Loving Myself with Narcolepsy

Loving Myself with Narcolepsy

Mindset
Maybe the most important lesson I have learned about feeling better is just loving myself with narcolepsy.  I'm not going to lie and say it's easy.  But I do think this is especially important for people with a chronic illness. I have ups and downs and I'm constantly working to try to do it more consistently.   It's easy to get into negative patterns and tear ourselves down. It takes a lot of practice to reverse that so that we are consistently giving ourselves positive messages. (more…)
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Positive Affirmations

Positive Affirmations

Mindset
Harsh rays of sunlight are scratching at my eyelids, begging to be let in.  I squint trying to lift the heavy lids and figure out where I am at.  It doesn't feel like my pillow or my bed, and my window faces West. I'm never harshly woken like this in the morning. It's a hotel, and the "blackout curtains" they boasted about on their page do not reach the ceiling.  It must be nearly 7:00 am anyway, so its time to wake up. Even on vacation, I don't dare sleep in and disturb my circadian rhythms.  That would send me crashing into a cycle of narcolepsy symptoms that I don't like dealing with.   I can read all the tips for wakefullness in the world and work on my sleep…
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