Loving a Narcoleptic: A Letter to My Future Love

By Jenean

3 min read

I am a narcoleptic. I am not like anyone you have ever known. Life with me will be different and can be difficult. If we are going to do life together, there are things you should know first.

Our tiredness is not the same

When you tell me I need more sleep, it hurts my feelings. I do not need more sleep! I need understanding!

If I look confused and ask questions, please do not yell at me, or roll your eyes. Narcolepsy affects my short-term memory.

When I tell you I am not sure if I am up to something, please do not pressure me. I am trying to make you happy and protect myself from symptoms at the same time.

I know you get tired sometimes, but it is not the same! I feel as though I have been awake 48 hours every day of my life. My tiredness is not the same as your tiredness.

I am not lazy — I am keeping my narcolepsy in check

Canceling plans happens a lot with this disease. I really do want to go and do things like others; however, my symptoms appear when they want and not on my schedule. I may cancel because I do not feel safe, not because I am too lazy to go. Please understand that it upsets me too.

I love having people over to visit, but I can’t entertain a lot of people at one time. There are too many moving parts. I’m not able to give attention to 10 people and host and keep my narcolepsy in check. We can always go visit our friends at their homes or go out to dinner!

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I love having fun — just earlier in the day

If I fall asleep while you are driving, please do not wake me! Let me wake on my own and I will be fine! If you wake me and I am not ready, I will be grumpy and out of sorts because my brain has not caught up with me. I will only be asleep for a few minutes, so be patient and know I will be awake and talking soon.

I want to stay up late and hang out with you, but if I do, I will not be the best I can be tomorrow. I must choose between late-night fun and feeling like I am walking with cement buckets on my feet the next day. I am not a Debbie Downer; I love having fun! I just need to have my fun earlier in the day. Can we do that?

Help me find solutions instead of harsh reactions

I know I forget a few things. I try my best to write things down and program reminders on my phone for everything. I mess up sometimes and it makes me feel horrible. I don’t want to pay bills late or miss important events. I may need a little help now and then with remembering.

I didn’t plan on my career ending so young in life. I had expectations of success and financial security like everyone else. I know we must adjust, and it will not be easy. When finances are tight, help me find solutions instead of a harsh reaction. I feel the emotional weight much more than you.

Accept me unconditionally

Life does not pan out like we envision sometimes. I have realized I cannot live my life like others, and I must do things differently. I’ve accepted it and would love for you to as well.

I am a unicorn in a meadow of horses. I am special, unique and require a little more patience and understanding. Will you follow me on this journey and accept me unconditionally?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Narcolepsy.Sleep-Disorders.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Erin D Member
Diagnosed with Narcolepsy about 2 years ago and began Xyrem. It took 18 months to get some control over my insomnia. I promise you I am not a ‘gimmick’ sleep advice person. I went from usually staying awake through my 1st Xyrem dose, and maybe getting 3 hours sleep after 2nd dose. Here’s what works: there are two podcasts, Nothing Much Happens and Get Sleepy, that after a week I was consistently falling asleep within 10-15 mins after 1st dose. I wear a sleep mask with built in Bluetooth headphones. Also, it’s imperative that I do not eat anything at least 2 hours before bed. To get a true full nights sleep, I can take Trazadone 25mg at bedtime…HOWEVER, it took me years to realize that Trazadone causes me to clench hands/jaw/neck/large muscle groups, and I woke up in so much pain so I’ve given that up. Now I sleep 2-3 hours with 1st dose and 2-3 hrs with 2nd. Sometimes I will take clonazepam and will get two more hours. I don’t dream all night like I used to, and most of my sleep is in deep wave sleep. My spouse and I are still learning how to balance our sleep cycles. The ‘adult bedtime story’ podcast and no snacks have proven to be key for me. On a side note, I realized by accident that my once severe rls was completely related to my sugar and carbohydrates intake for the day. I promise, I’m not suggesting fads here, these changes made a world of difference. Also melatonin…which I’knocked’ for years. But it also helps get a little more out of Xyrem. 
1. Tatiana Corbitt Moderator & Contributor
 <inline-mention username="Erin D" user-id="6655488"/> Thanks for sharing what works for you. I am glad you are able to get the good kind of sleep, deep sleep, using Xyrem! One of our community advocates wrote an article on what it felt like to get deep sleep for the first time with Xyrem, if you'd like to read their experience you can do so here: <a href='https://narcolepsy.sleep-disorders.net/living/nighttime-sleep' target='_blank'>https://narcolepsy.sleep-disorders.net/living/nighttime-sleep</a> Our community is here to celebrate your wins and support you as well! Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
Lef.1028 Member
I've had narcolepsy since in elementary. Treatment for me started when i was 17yrs old. They used me as a lab rat, often bouncing me from one med to another. I stopped taking meds then i found out about Adderall through my ex wife. That helps me be aware more often through the day but i still take several brain functioning supplements, avidly exercise, and keep up with my nutrition to keep my narcolepsy somewhat under control. 
1. Lef.1028 Member
 <inline-mention username="Tatiana Corbitt" user-id="4122413"/> If you have a vitamin store, preferably Vitamin Shoppe, try 1. Super Energy (it's a pill) 2.Irwin Naturals Brain Awake 3. Irwin Naturals Information Retention. Those would be a good start!
2. Tatiana Corbitt Moderator & Contributor
 <inline-mention username="Lef.1028" user-id="4267027"/> Thanks so much for sharing what works for you! I really appreciate it! Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
Iris Vasconcelos Moderator & Contributor
<inline-mention username="Jenean" user-id="4121732"/> Such an utterly beautiful, heartfelt letter Jenean! It genuinely spoke to me so so much! Very nearly made me cry and I want to share it with the world! So very beautiful and relatable at least for me. Amazing amazing job hun! Loved it so much! Take care! Iris xxx
Lef.1028 Member
So, everything you wrote was spot on! I am a very hard worker. People often don't believe me about my disease cause I am blessed with athleticism and can push myself even when I'm having narcolepsy attacks. People's belief really start to kick in the longer they are around me. I am an extrovert, so being around people and talking is something I love, but I definitely understand when you mentioned the struggle of hosting people. It to hurts my feelings when people, especially those i consider close, say STUPID remarks such as "did you get enough sleep", "you're sleep again", "you look tired", etc. I have been suspended from gyms, currently homeless, relationship destroyed, and let go from jobs all cause peoples ignorance and selfishness! I've often been humiliated in public by onlookers laughing at me not knowing I can hear sometimes when I'm napping or have an attack. Even though people see me work my but off and do things they can't, I have often been seen as lazy. And, when you mentioned you dont feel safe sometimes, I definitely feel that though many people are intimidated by me. I have many times blacked out while walking from destination to destination along the highway, and when i arrive places i couldnt remember how i got there.
1. Lynne Moderator
 <inline-mention username="Lef.1028" user-id="4267027"/>, I'm glad Jenean's letter resonated with you. It can be comforting when we learn that we are not alone in our struggles. Your story breaks my heart. Have you been able to seek treatment? Many in our community have been able to manage symptoms with medication. Please let us know if you would like more information. Warmly, Lynne (team member)
2. Lef.1028 Member
 <inline-mention username="Lynne" user-id="4121960"/> I take Adderall to help me, but most my help comes from studying herbs and vitamins