It’s Me and I Hate It

By Plumcrazyxoxo

1 min read

Narcolepsy to me is the devil. I hate it so much. It has ruined my entire life and I don’t know what I’m going to do. I find myself lost all the time. I fall asleep in parking lots, at red lights, and I sleepwalk. Denial that I can’t even talk to someone.

Searching for the right medication

I’ve been on and off medication. It’s been two years since I’ve been on the correct medication now. I was so desperate that I went online for an online doctor who prescribed me new shit. It is not helping me at all. I have public phobia so bad I barely leave my house. My 17-year-old son won’t even live here because he is so confused by my actions. I don’t sleep because I’m so afraid to be alone and sleep. I never know what I’m gonna do when I shut my eyes.

Trying to move

Right now I’m packing my stuff to move and I don’t even know where. I have to move and I will be homeless because I don’t know what I’m gonna do. I have plenty of money and I can not yet do what I need to do to find a place to live. I have two dogs and I don’t know what I’m gonna do and I just sit here doing nothing. I get lost driving down the street. I hate this disease, I hate my life, and I’m just about done with all of it. I’m alone and I have no one. What does it matter anymore? This disease has ruined me, has ruined all of me. I’m a great person and I need somewhere to sleep that you can’t wake up. I help people, I’m forgiving, loving, and funny. I have a lot to offer up.

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JBaldwin Member
Are any of you aware of a support group in central Virginia?
1. Lori.Foster Community Admin
 Hi JB (<inline-mention username="JBaldwin" user-id="4205403"/>). Here is a website that can help you find in-person support in your area: <a href='https://narcolepsynetwork.org/resources/support-groups/' target='_blank' rel='noopener noreferrer ugc'>https://narcolepsynetwork.org/resources/support-groups/</a>. I hope this helps. Best wishes. - Lori (Team Member)
JBaldwin Member
<inline-mention username="Plumcrazyxoxo" user-id="4704657"/>, I just ran across your story. You are experiencing very normal reactions to the diagnosis of Narcolepsy. For me, I was diagnosed 14 years ago after a brain injury from falling asleep and hitting the floor. I have a decent regimen of medication and practices that I can taper to each crazy day. It definitely ruined and continues cost me time, strength, and the ability to work. I had to retire early from a nursing career that I spent 40 years and lots of education for and that I love. It costs me so many losses that I spent a lifetime building. People are scared to be around me as I will fall into a trance. I have been accused of drug addiction and anything else that makes gossiping make people feel superior. I have broken my face, nose 4 times, as well as my ankles, my left lower leg, both the tib and fib, and most recently this month, my shoulder then my femur. I have so much hardware it’s ridiculous. So, if that’s not enough torture… I ended up trying to commit suicide and most recently spent a week in the mental ward at Lynchburg Baptist Hospital for severe depression. My son ended up in rehab for alcohol abuse and my daughter’s do not want a relationship w me. It sucks! I am homebound and non wt bearing on my left leg for the next few months . I have to depend on my boyfriend to wait on me (how degrading). Because I had an alcohol problem and have been in rehab twice, he hid my pain pills from me, then, my regular medication. Ok so then, I get a call from my doctor that my mammogram has to be further looked at because they see a mass. Thanks for this forum to allow us to vent, as talking about what is happening in each other’s life is the best therapy! Despite all of this, today I feel blessed and mentally stable due to my faith in my higher power and the plethora of medical professionals that serve me. Peace, JB
1. Lori.Foster Community Admin
 Hi JB (<inline-mention username="JBaldwin" user-id="4205403"/>). I'm glad you have your faith to lean on and that you feel comfortable venting in this community. That's what we're here for -- to offer support and a safe place to vent. What a journey you've had. I really hope your daughters come around someday and realize what they are missing out on. That breaks my heart. Have they behaved this way for long? Has your son been able to stay away from alcohol since his stay in rehab? I have a lot of respect for people battling addiction. It's such a powerful disease. I hope both you and your son are able to remain in recovery and live your lives to the fullest. Though it might feel degrading to have your boyfriend wait on you and take control of your meds, how awesome that he is willing to do that. Do you feel like he understands narcolepsy and what you are going through? I hope the mass is either a shadow or something that is harmless and benign. When do you go back for further testing? Please let us know how it goes, if you don't mind. I'll be thinking of you and sending loads of healing thoughts your way. - Lori (Team Member)
2. Tatiana Corbitt Moderator & Contributor
 <inline-mention username="JBaldwin" user-id="4205403"/> JB, thank you for sharing such a deeply personal and powerful story. I can’t imagine the challenges you’ve faced, but your strength, resilience, and faith are truly inspiring. And as a fellow person with narcolepsy whose narcolepsy onset suddenly, I CAN relate! I appreciate your openness in sharing your journey... I feel it creates a space where others can feel safe and understood in our community. Please know that you’re not alone on this journey—our narcolepsy community is here to support you as well! Take care of yourself, and don’t hesitate to reach out anytime. We’re all in this together! Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
Tim B Member
I should have added to my uncaring sounding post that I sincerely hope for you to feel better, and have success in your journey to understand your condition. For my own disorder it seems there will be no end to that process, but I'm okay with that. The act of being engaged in the process alone makes me feel better, and I commend you for accomplishing that. I'll be thinking about your situation, and I hope you post more about what happens next.
1. JBaldwin Member
 <inline-mention username="Tatiana Corbitt" user-id="4122413"/> Definitely agreed. Stress causes my cataplexy, makes me dream weird stuff and have severe night terrors. People really don’t understand that how they treat you has a very negative reaction. I really try to mind my own business and not engage in too much socialization.
2. Tatiana Corbitt Moderator & Contributor
 <inline-mention username="JBaldwin" user-id="4205403"/> Definitely, and narcolepsy can be so isolating because of it, too. I can't tell you how many times I've avoided socializing because of it worsening my symptoms, or just generally wearing me out. Sorry you can also relate to this. You are not alone in this, though. One of my articles discusses the topic of narcolepsy and social isolation here: https://narcolepsy.sleep-disorders.net/living/when-friends-understand Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
leiterportillo88 Member
I really hope you are doing better. I get it. I get tired of depending on people to take me here and there. I had to start cutting back on my door dash, I get depressed and I eat......Can't go out and order....It is an endless circle. I would not wish this on my worst enemy. So many people don't understand. I have found a lot of support from this group. It is very encouraging. I sincerely hope you are doing better. The public is very uneducated about narcolepsy. Please don't give up.
1. Lori.Foster Community Admin
 I am glad hear you find this group helpful, <inline-mention username="leiterportillo88" user-id="7000446"/>. It's people like you who make it such a welcoming and supportive place. Warm wishes. - Lori (Team Member) 
2. Tatiana Corbitt Moderator & Contributor
 <inline-mention username="leiterportillo88" user-id="7000446"/> You are absolutely correct about people being uneducated about narcolepsy. I actually have an example of this in my article here: <a href='https://narcolepsy.sleep-disorders.net/living/ruins-day-napping-public' target='_blank'>https://narcolepsy.sleep-disorders.net/living/ruins-day-napping-public</a> Thank you for the kind words of support to your fellow narcolepsy community member, it means a lot! Take care, and I hope you like the article. Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
Frannymojo Member
Now I saw this and see it's from last year I'm wondering you are . Your story touched a nerve as it's so similar to mine , I hope your doing ok .? X
1. Tatiana Corbitt Moderator & Contributor
 <inline-mention username="Frannymojo" user-id="4544117"/> Thank you for taking the time to support others in the community. Supportive community members truly make a difference and helps create a welcoming space for everyone! On that note, I hope you are doing well too. We’re all in this together, and I’m so glad you reached out. Take care, and don’t hesitate to connect anytime. Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
Lori.Foster Community Admin
Hi <inline-mention username="Plumcrazy10" user-id="4494638"/>. My heart aches for you. I am fairly new to this community. I know you posted a year ago, but when I saw your story, I felt I had to reach out. You were truly in crisis mode then. I hope you found the support and resources you needed. Please let us know how you are doing if you don't mind. If you are still struggling, maybe we can help point you toward the resources you need. At the very least, we can provide support and a safe place to vent. Sending lots and lots of gentle hugs and warm wishes your way. - Lori (Team Member)
Kerly Joy Bwoga Moderator & Contributor
I'm just seeing your story. So sorry for your situation. How are things with you now? Was any of the support groups helpful? (TeamMember)
Gabrielle Keith Moderator & Contributor
<inline-mention username="Plumcrazyxoxo" user-id="4704657"/> I am so sorry to hear that you are struggling. I, too, have had a lot of issues with finding the right medication after being diagnosed. At one point I felt like I was losing my mind and my doctor wouldn't listen to me. It took me crying and yelling at him, practically begging to be taken off the medication he prescribed. (Since then I found a new and much better doctor). I'm sorry you feel alone, but try to remember that there are so many people in this narcolepsy community that has been where you are. If I have learned anything from my diagnosis, it is that I'm not alone. I encourage you to join a support group. There are some support groups through Wake Up Narcolepsy and Narcolepsy Network that meet virtually. That was a huge life-changer for me personally. Best of luck to you, Xoxo/Zzz, Gabrielle