I’ve been diagnosed with narcolepsy for over 6 years now. Since that time period, I’ve climbed out of major depression, changed career paths over three times, moved across the country, and have undergone a lot of self-education. I’ve learned a few things from that process that I wanted to share with you today.
Here we go…..
- People won’t understand what it’s like — and that’s okay. People with narcolepsy don’t have arm braces, or use diabetic needles, or use inhalers. There are no outward symptoms of this disease beyond head nods that would signal to others what the experience is like. People assume you are just sleepy. They truly don’t know how this feels. I’ve come to terms with that being okay. My friends will understand narcolepsy just as much as I understand Parkinson’s disease.
- Medication is an entirely unique experience. Provigil gave me heart palpitations and extreme anxiety. But for others, it’s their saving grace. It works for some and for others it causes more cons than pros. But that’s alright. Listen to your body. Follow the treatment regimen that gets you the best results.
- Western Medicine Doctors don’t have the best nutritional education. When I was first diagnosed and I asked my sleep specialist what specific foods I should be eating she literally rolled her chair over to Google and started typing. I was floored she didn’t have an answer ready. It’s a reality that most MD’s who come out of the western medical system don’t have an exhaustive nutritional education. You are much better seeking nutritional advice from a registered dietician rather than your sleep specialist.
- No one is going to hold my hand. No one is going to save me. Yes, there is help. Yes, I use the resources around me from my insurance, to friends, to family. But I have to walk the path. I have to put the healthy food into my body. I have to stick to a regimented sleep schedule. I alone am steering this ship.
- You have to develop grit. Some days your EDS will get the best of you. Some days you will feel like giving up. But you can’t. You have to become resilient to live with this disease.
- There are other forms of treatment. I went down a path of self-discovery about 3 years ago. Reading every book I could on nutrition. Learning about meditation. Learning how to strength train. Diving into the Wim Hof method. Simply put: there are other means to improve your wellness beyond pharmaceuticals. Learn about them. Embrace them. Implement them into your life.
- Your health is entirely connected. The more I manage my stress, eat cleaner, lift weights, and surround myself with positive environments, the better my narcolepsy is. Your health is all connected. Physically – Spiritually – Mentally. Don’t neglect other aspects of your wellness because you assume Modafinil is a cureall. Eat your veggies, calm your mind, and strengthen your body.
I’m sure there will plenty of other lessons I learn along the way. But these were the first that come to mind.
Hope this helps.
Your sleepy friend,