This Sucks!

By Mariahann

1 min read

I’m starting to believe that I’m going to be alone forever at this point. No one lasts too long in my life because I’m “unreliable" or "unavailable when they need me". I fall asleep while friends are crying asking for support or advice. I don’t show up to events that mean a lot to my friends or family. Sometimes I just feel so weak and sluggish that I cannot drag myself to get up and do the things I should be doing.

My relationships don’t last for the same reasons. I’m starting to believe I’ll be alone forever. I’m tired of explaining what narcolepsy is to everyone. I’m tired of people thinking I’m using it as an excuse to get out of things.

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Narcolepsy literally ruined my life. I can’t hold on to relationships or friendships. I can’t even laugh too hard without my body collapsing, to the point I avoid laughing. I avoid enjoyable moments because I’m afraid of having cataplexy attacks. It just really sucks all around.

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Lori.Foster Community Admin
Hi <inline-mention username="Mariahann" user-id="4244003"/>. It has been a long time since you posted this story and you were in such a difficult place. I wanted to reach out and see how you are doing now and whether we can offer you more support. Gentle hugs. - Lori (Team Member)
CommunityMembera9cb15 Member
I don't really know what to say on the subject except I have narcolepsy with severe cataplexy no meds just pure hate for my self if it wasn't for having my little girl here to she's all I've got but to be honest ide rather not live this life it's a very hard life to live I'm only staying strong because I have my daughter I've never had help or offered any kind of support I've begged my doctor to help five years of nothing hopefully you guys are on the right track 
1. narcolepticnik Member
 <inline-mention username="CommunityMembera9cb15" user-id="6618280"/> I have very bad cataplexy too. I went to so many doctors and whenever I told them what I was experiencing they looked at me like I had 10 heads. They would send me for blood tests and everything would come back normal EVERYTIME! It was not until I went to a sleep specialist that they were able to diagnose me and give me medication to help manage my narcolepsy. I know you put this comment up about 7 months ago so I hope that things have started to look up for you. If you ever need support you can always feel free to message me on here.
2. Lori.Foster Community Admin
 Hi <inline-mention username="CommunityMembera9cb15" user-id="6618280"/>. I am just checking in to see how you are doing now and whether you were finally able to access medications. I am glad you have your daughter to keep you advocating for help. If you tell us more about your situation, we might be able to point you to some resources for help. Gentle hugs. - Lori (Team Member)
narcolepticnik Member
Hope you are doing better! I completely understand where you are coming from. I had to distance myself from some people who did not care to understand. The ones who get it and support you regardless are the ones who deserve a spot in your life. I hope things turn around for you and your narcolepsy becomes manageable.
Tatiana Corbitt Moderator & Contributor
<inline-mention username="Mariahann" user-id="4244003"/> I'm sorry to hear that you are going through this. I've experienced these feelings before about my circumstances with narcolepsy. Everyday is a struggle to get appropriate accommodations for my disability and access for my service dog, who helps me manage my narcolepsy symptoms. I get really frustrated sometimes, and I've experienced feeling hopeless too. Please take care of yourself, and thank you for sharing. You are not alone in this! Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
Gabrielle Keith Moderator & Contributor
<inline-mention username="Mariahann" user-id="4244003"/> First off, I want to say I am sorry you are going through this period of loneliness and negative feelings. Since my diagnosis in 2018, I have gone through this roller coaster of thoughts and emotions too. Don't ever think that you are not worthy of a healthy and solid relationship just because you are sleep deprived. Give yourself grace! Second, I highly recommend looking for a narcolepsy support group. Check out Wake Up Narcolepsy's support groups. They have been a life changing thing for me, and I don't say that lightly. Last, you are NOT alone. There are thousands of other people with narcolepsy who have experience exactly what you are feeling now. I said it before and I will say it again, give yourself grace. You are an important and strong woman, even more so because you fight through your diagnosis every day. You make the choice to wake up every morning. That in itself is a win. I'm going to share a couple articles that I hope might help. One was written by me and the other is by <inline-mention username="Tatiana Corbitt" user-id="4122413"/> . I wish you peace, sleep, and positive vibes. Xoxo/Zzz, Gabrielle https://narcolepsy.sleep-disorders.net/living/lonely-nights https://narcolepsy.sleep-disorders.net/living/unreliable