Narcolepsy After Covid- A Happy Ending

Narcolepsy After Covid- A Happy Ending

Narcolepsy, Personal Story
I have seen multiple people asking what people's Narcolepsy has been like after having the Covid-19 virus. So I want to share my own experience of what narcolepsy after covid has been like for me. I recognize that everyone's experience is different, and I by no means intend to take away from anyone else's experience with the virus. But for me, the story has a happy ending. (more…)
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Is Narcolepsy Treatable Without Medication

Is Narcolepsy Treatable Without Medication

Narcolepsy
There is a long answer and a short answer to the question, "Is Narcolepsy treatable without medication"? The short answer is that yes, it can be treated in many ways without medicine. However, this depends on the results you are looking for. There may be multiple different "treatments" you will want to combine to get the desired results. Even if you do take medication for narcolepsy, you can combine that with additional treatments so you get the best results possible. (more…)
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What Causes Narcolepsy – A Natural Theory

What Causes Narcolepsy – A Natural Theory

Narcolepsy
I picked up Louise Hay's book, Heal Your Body: The Mental Causes for Physical Illness and the Metaphysical Way to Overcome Them. I wasn't thinking about what causes narcolepsy, just about healing in general. For the most part, I have a good handle on my health. I don't feel like narcolepsy has much impact on my day-to-day life anymore, and the migraines get better each time I face them and look at the underlying cause. Screenshot of Author's Kindle Notes But I figured looking at one more approach won't hurt me. This book lists a variety of ailments, suggests an emotional cause, and then gives an affirmation to help you heal the emotions that might be manifesting at the symptom. Louise Hay's Message Image by Author "For us to become…
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Taylor Schilling Claims to have Quarantine Narcolepsy

Taylor Schilling Claims to have Quarantine Narcolepsy

Narcolepsy
Less than two weeks after World Narcolepsy Day, I see the term "quarantine narcolepsy" on my newsfeed. When I learned that it was a reference to narcolepsy on Late Night with Seth Meyers, I was vaguely curious. Image by Christo Anestev from Pixabay Seth Meyers asked Taylor Schilling, known for her role as Piper in Orange is the New Black, if she has developed any new coping mechanisms during quarantine. She responded, "I think I've become a bit of a narcoleptic person like I hear like oh 'plague and pestilence' and then I go [ugly face] and I pass out again. [laughing] Like I just leap or I'll fall asleep in different areas and new places, it's uncomfortable." Seth responds, "That's interesting. So you just think you have like an…
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Learn How to Live with Narcolepsy

Learn How to Live with Narcolepsy

Narcolepsy
On Sunday, I was on a Facebook live chat with Project Sleep to share how I live with narcolepsy. First I read an article I wrote as part of the Rising Voices of Narcolepsy program. Then, Julie Flygare asked me some questions about how I manage narcolepsy and what my experience has been like.   You can watch that here. Our conversation helped me realize that I have done a whole lot more than I ever realized to live with narcolepsy.  Things that I just see as part of my habits and daily life now are actual strategies for treating Narcolepsy.  I know there are plenty of things that I didn’t think of mentioning in the hour we had Live. So I’ve tried to list them out simply below. This has…
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Relationships with Narcolepsy or Without

Relationships with Narcolepsy or Without

Narcolepsy, Personal Story
Building relationships with narcolepsy or other chronic illnesses can be a challenge due to a limited social life. I'm standing outside a huge fancy house with a glass of red wine in my hand staring at a sea of people I don't know.  I feel completely overwhelmed by the sheer number of people at the party, but at least half of them work with my partner. My partner has not even made it to the drink table due to so many people wanting to stop and chat.  I escaped, knowing the formal handshakes and cheek kisses that are obligatory in these social situations tire me out quickly. How I Handle It I gravitate toward the one woman I know, a friend.   We chat for a while until she also finds…
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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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How to Treat Narcolepsy

How to Treat Narcolepsy

Diet, Lifestyle, Narcolepsy
There are a million resources out there that will tell you how to treat narcolepsy medically including various stimulants, or other medications like Baclofen, or Xyrem. There are also some new medications being tested that sound promising, but I don't have any personal experience with those. For some people, when they receive the right combination of medications, their narcolepsy is managed well and they go on with their life, which is amazing.  But for many of us, the medications alone don’t give us the results we desire. Physically our bodies are all different and mentally we are all in different places as well. So, it makes sense we all need different things to treat narcolepsy symptoms. (more…)
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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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My New Year’s Revolution

My New Year’s Revolution

Mindset, Narcolepsy
Most New Year's Resolutions I have made in the past have been about changing myself.  They could be changing my appearance, like losing weight or taking better care of my skin. Others have been about making more money or saving more money in the hopes of feeling a certain way.  Some have been about exercising more, doing more meditation, or reading more books. But this year I am going to try something different. (more…)
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Cataplexy in a Cathedral

Cataplexy in a Cathedral

Narcolepsy, Personal Story, Travel
Sharing a plate of fried watercress, a heaping dish of tea leaf salad, and a bowl of eggplant curry, I found myself saying more about my chronic illness than I ever expected to disclose on a first encounter. I heard myself explaining things my body does in words I had never strung together verbally before. Maybe it was the second glass of wine, or maybe it was the humid air, the colorful Myanmar decor, and the attentive listener on the other side of the able. He seemed genuinely interested in how a person with narcolepsy had come to travel as a lifestyle choice. (more…)
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Scared of the Dark: The Narcolepsy Symptoms That Nobody Talks About

Scared of the Dark: The Narcolepsy Symptoms That Nobody Talks About

Narcolepsy, Personal Story
One night around age eight, I was lying in bed thinking of the fun I had had that day with my family. I opened my eyes slowly to see a huge, hairy, manlike monster hovering above me on the ceiling. His appendages stuck to the plaster effortlessly, like a giant spider, and I could see his gigantic teeth waiting to sink into my flesh. I was completely paralyzed. So much that I couldn’t even scream. I lay there on my Care Bear sheets, trapped in my own body, unable to even clench my fists, or turn my head away from the terrifying sight above me. He dropped onto my chest, and I could feel the enormous pressure of his weight. The next thing I knew, it was morning. As a…
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Digital Nomad or Hobo – Which label fits?

Digital Nomad or Hobo – Which label fits?

Mindset, Narcolepsy, Personal Story
Am I a digital nomad or hobo?  The label of "Digital Nomad" generally calls up images of social media influencers, relaxing on the beach, posting pictures that make everyone jealous.  While I do enjoy sharing my travel experiences, I am not quite on that level. But am I a hobo? I am an English teacher who just happens to work online. I use that advantage to travel as much as possible. But how did I get here? Was it a choice? Which phrase fits, digital nomad or hobo? (more…)
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Accepting Narcolepsy

Accepting Narcolepsy

Mindset, Narcolepsy
I believe I have tried almost everything available to treat narcolepsy. I have a strong desire to feel better. Like many people with narcolepsy, I am not lazy. I am actually overly ambitious and often do more than my body can handle and later face the consequences. I think I have worked pretty hard to feel as good as I feel now, but I always desire to feel better. (more…)
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People First Language Matters

Narcolepsy
Have you ever been called names?  Have you heard someone describe you in a way that didn’t sit well with you? Your first instinct may have been to go back to the schoolyard saying, "Sticks and stones may break my bones, but words will never hurt me." Unfortunately, that is not true. (more…)
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