The Importance of Relationships with Narcolepsy or Without

The Importance of Relationships with Narcolepsy or Without

Narcolepsy, Personal Story
Building relationships with narcolepsy can be a challenge due to my 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. [caption id="attachment_1154" align="aligncenter" width="300"] Photo by Andreas Rønningen on Unsplash[/caption] 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…
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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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Healthcare in Auxiliar Program Spain

Healthcare in Auxiliar Program Spain

Narcolepsy, Personal Story, Travel
In 2014 I applied for the Ministries of Spain Auxiliares program on a whim. I didn't know the healthcare in the auxiliar program in Spain would be so great! I was also considering teaching in Asia for programs like EPIK and HESS. I had promised myself I was going wherever I got an offer first because I had to get out of the USA. The day the email came telling me I had a position in Spain I couldn’t believe it. I was going to be living in Ibiza! Everything happened pretty quickly since I got my carta mid-summer. I had to quit my full-time job, sell all my furniture, get the Spanish student visa in Chicago, and physically move to Spain! But of course, there were some worries. I…
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5 Things You Can Do NOW to Manage Narcolepsy

5 Things You Can Do NOW to Manage Narcolepsy

Lifestyle, Narcolepsy
Can Narcolepsy be cured? While narcolepsy can still not be cured, there are lots of things we can do to manage narcolepsy.  There are so many different narcolepsy treatments available, we don't have to give up.  Everyone has to find the narcolepsy treatment options that work for them! Some people choose to treat narcolepsy naturally.  There are ways for us to mitigate our symptoms without taking narcolepsy medication. We want to beat the brain fog, fight fatigue, and take back control over how we feel.  This list is about short-term goals!  Try one or more of them NOW! (more…)
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Tips for Traveling With Narcolepsy

Tips for Traveling With Narcolepsy

Narcolepsy, Travel
Don't Travel Tired Do you worry about traveling with narcolepsy? Traveling tired can be dangerous. I feel like I am a smart traveler and pay attention to my surroundings. But once the sleep starts creeping in its easy to start letting my guard down and focus on staying upright.  (more…)
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EFT for Narcolepsy

Lifestyle, Mindset, Narcolepsy
When I say that I deal with pain every day, I think many people can relate.  We all have little aches and pains that plague us throughout our lives; that knee injury from high school, back and shoulder pain from stress, or recurring headaches that can't be explained.  I even include emotional pain in this definition. Physical chronic pain has become a widespread issue affecting more than 100 million Americans while remaining an invisible illness.  It doesn't receive attention because there is no way to compare levels of pain or measure how much it improves or gets worse. We all can believe our pain is worse than others' but that doesn't help us feel better. (more…)
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