I apologize first off its not my intention to be negative. I just want to express myself and release some stress.
When I was younger I tried to be active and be involved in boy scouts. I received my eagle at 17 and continued on as a scout master. I was also starting to fall down and I never new why. It started slowly with getting off the couch and falling back into it. I thought I got up too quickly. It was the first time i felt dizzy from standing and it was an odd sensation. This is how I know it was the first time.
I wasnt sleepy or tired iwas going about my job and collapsed and my arm went into a fryer that was turned off. I thought I was careless but I didnt remember slipping. I changed jobs soon after and had another collapse in a parking lot as a cart pusher. It was here I began to seek assistance. I was told that it was vago vagal syncope which for anyone on their way to being diagnosed knows this just means falling down and there could be a myriad of reasons why. I didn't stop working I went on family leave and came back 3 months later. It happened again during a staff meeting and i was picked up off the floor next to the vending machine I was leaning against.
I took another leave that was permanent. I applied for ssi and was denied. I was approved the second time round and found a job doing tech support. We thought a sit down job would be the fix. I went almost a year and then blam on the floor while talking to a customer. Baby on the way and ssi getting repealed because i was working i felt low. 8 months later I found another job in tech support and fixed computers in my spare time. I've been fortunate that i could always rely on that from home. This job would pass more quickly than the others 3 months and I was fired. I found another job troubleshooting apple and lasted 6 months. I even got employee of the month a couple of times. I finally got disability and made ends meet. Now I had school loans that I couldnt handle and had dropped out of class twice. I tried two attempts at college and was found in the hallway and had to explain i don't know why I pass out. The other was online and Couldnt keep up because of bad weeks. Top of my class first semester bottom and flunking 2nd.
I knew this wasn't me. Im a hard worker damnit I try to provide and help and I fail at every turn. After getting a job fixing computers that were under warranty at peoples homes I thought i had acheived what I wanted. A purpose in this crazy adventure. I was helping others making a difference and travelling then I took a nap on the side of the road. Got help one more time because i knew it wasn't migrains or my nerves. The meds weren't working and I wanted something real i got that after turning 27. Narcolepsy with cataplexy fit everything that was wrong. Hooray i know what it is wait its not curable and it's a lifelong affliction?
This made it worse knowing that my cataplexy was triggered by emotions made me aware of it happening more often. As they say ignorance is bliss. Now I own my own startup company and do all my work from home. Which gets depressing. I get to see my kids all the time and I'm grateful for it. I also have times when i have passed out and my children were left without supervision as I was the only [arent at home. I shudder to think what could've happened to them.
The old me wouldn't fall asleep he would be outside playing ball not asleep in the chair. I don't feel comfortable in my skin anymore its like someone has taken over. When I have days like this I cant pull myself out of the hole I've dug. Sadness and resentment follow me all day and remenants of it linger for days after. My faith has been shattered. I hear its not my fault and everything will work out but i continue to blame myself.
I find limited joy in my life now. I dont want to self loathe anymore. How do i let go and forgive myself. The last week i have never felt so low. I wish there was someone locally to talk to. Therapists only understand few aspects of this. My family needs me i cant give up! but how do I continue?
I could cry reading this because this is exactly what I've been struggling with and I've been very depressed about it. A little more than a year ago I was let go from my job and I can't tell you the exact reason because I swear all I heard was that I wasn't good enough and I wasn't cut out to do things like "normal" people are. I found out much much later that my boss at the time had cut the whole team, but the damage was done. My greatest fear since being diagnosed is that this is going to hold me back from doing things that I know I should be able to do, and losing my job felt exactly like that.
I've been in a deep depression for the past year and now that I've got a new job, I think that I'm starting to pull out of it a little bit. The fear is still there and I wonder if I'm trying too hard to prove myself to everyone that I work with. It's exhausting and every day I come home so tired that my whole body just aches and it doesn't make sense to me because I work a desk job.
I guess I don't feel mad at myself, because the way I see it I didn't do this to myself. I'm angry with the universe I guess and I keep telling myself that there's people out there struggling with worse things but it only makes me angrier. I had huge dreams for myself and all of that has been washed away. I saw myself doing all these great and difficult things and now I can't even write this comment without going paralyzed from all the emotion (seriously, this comment is going to take forever to write at this rate).
I don't know who I am anymore and it sounds so funny, but I swear it's true. My mom made a comment that I tend to mimic certain traits of people around me and maybe that's because I don't identify with myself anymore. A therapist once told me that I seem to be mourning the loss of the person that I was before these symptoms started showing themselves. I can see that, I mean I hold on to all this stuff from when I was younger because maybe in some way it will bring back who I used to be. Kinda silly huh?
You aren't alone though, hang in there. I'm here for you if you ever want to chat sometime.
First of all I want to ask if you have told your doctor what you've shared with us here. Please do. We need teams to support us and doctors are part of your team. Are you also treated for sleep apnea?
If you've been feeling really depressed or hopeless to the point of giving up call these hotline numbers, which is totally okay to do even before a crisis hits. I know because I've done it as a way to expand my "team" and get my bases covered. Crisis folks are trained to listen and help if they can. I found this number for Las Cruces: 1 800 273 8255, and this national number: 1 800 784 2433. The national number is the AFSP, an organization I raised funds for by walking last year, so you're good to go :)! I take you seriously because not giving up is really hard when a challenge is overwhelming. You have had a really tough time.
You are not only working but you're raising a family, and you'll find by reading here that many of us either don't know how we did it, or are asking for suggestions for raising families now. Children are resilient. We are, too. It can take awhile to realize the tremendous value of your parenting and the other work you're managing to do, when so much happens in the moment. In between, and during, everybody needs rest and acceptance for exactly who they are. Your kids will learn from that.
If you've found therapists unaware of disabling conditions, it might be because they need to self-educate and didn't do it, so tell them what you can and ask that they familiarize themselves with narcolepsy. Maybe your sleep doctor, DVR?, knows somebody with experience with disabilities.
Thank you so much for sharing your story here! I recognize so many of these feelings, and the determination you have. Kind wishes to you and your family.
Thank you Carol I was feeling very down that day and it helps to see that I'm not alone in this. I have been feeling lifted up these last few days and hope that it is a long time before I get in that position again. I will keep the 1800 number. I haven't seen my dr since starting on this site I will be seeing him soon. According to my sleep study I do not have sleep apnea. I have started keeping a daily journal chronicling how I feel and what I eat to see if there is a correlation to my condition. Everyone on this site is awesome thank you for your support.
Hi trtlator, I know and understand what you are feeling and going through, I to am narcoleptic and have a husband and 3 children. Me sleep Dr told me 6 months before I realized it that my disease had sent me into a depression so I finally accepted it and he referred my to go see a psychologist and that was the best thing have done. When I say that I mean me actually going in to see her it helped me allot. I have been working since I was 14 years old and for me to be Told that I can no longer work at the age of 35 was devastating, but I look at this way things could be worst, yes we are battling this
horrible disease but we are still able to wake up and use all of our limbs each and every day. And I push myself to the limit everyday for my husband and children they are the reason I keep fighting, I won’t ever give up I wok give out before I give up. So keep your head up and never give up and you have no reason to blame yourself because we don’t know what God’s plan is for any of our lives. Best wishes to you.
I also have Narcolepsy with severe cataplexy. Shortly after turning 15 I suddenly began falling asleep randomly and when I would wake up I would have no memory of ever falling asleep. I also began to collapse and drop things but I had no idea why. Back then my teachers just thought I was falling asleep in class by choice and by the end of the school year my grades were so bad I'm honestly surprised I ever managed to pass. I was determined to figure out what was going on, so I began to research and I eventually got diagnosed and I was approved for SSI. By then I was just about to start 10th grade at a new school and I was confident in myself because I had finally figured out what was wrong with me, but my confidence didn't last long. My new school did nothing to help me despite my diagnosis and because of this my grades quickly dropped. I frequently fell asleep in class and it eventually got to the point that my work was piling up faster than I could complete any of it. One day after school my mom had parked across the street and without thinking about my cataplexy, I went to cross but then suddenly fear of getting hit by one of the cars triggered my condition and I collapsed right in front of an on-coming bus! It was extremely stressful. I knew that I was trying my best but despite my efforts I was still falling behind. I would look around at all the other students around me and see that they were barely trying to complete their work. They were taking their education for granted and it pissed me off because I was on the brink of just giving up. One day I had fallen asleep in health class and at first I didn't realize what was happening because I was half-asleep, but a guy sitting in the seat in front of me had been repeatedly jerking the table to wake me up because he thought it was funny. My doctor had told me that if I was to be suddenly jerked awake, I could have a seizure, so once I woke up and realized what was happening, I was done. I dropped out of tenth grade that same day because just simply being in class had become life threatening. I was so angry, but I still didn't give up. I immediately began studying for the GED but quickly discovered that no matter how much I studied, I would forget how to do all the math I had just taught myself how to do. At one point I fell into a deep depression but I was lucky to have support that helped me out of it. Some time passed and I attempted to finish highschool by attending an online school. Unfortunately the school I applied to had no idea what they were doing and I found myself having more trouble with the school's technical problems than I did with the actual work. It got so stressful that I even developed stomach ulcers and due to how worried my parents were I decided to drop out. This year I'll be turning 20 and I have no idea what direction my life will take. Despite how bad things have been, I've come to the realization that this 'condition' I have is apart of who I am and as long as there isn't a cure for it, it will be apart of me for the rest of my life. Instead of letting it get in the way of what I want to do in life, I've developed a strong determination to be the best that I can be and to push myself to the limit each and every day because damnit, this is MY life. Because I don't have a job and I don't go to school, I have a lot of time on my hands so I've began to volunteer and get involved more in my community and I've also made it my personal goal to do the things I've always wanted to do in life. Instead of seeing my condition as a disease that limits my abilities, I've adapted to it to a point where now I accept it as apart of myself and I either work around the symptoms I have or I push myself to get passed them. Life is short and I'm not about to sit here and allow this to prevent me from living my life the way I want to live it. So my advice to you is to accept yourself for who you are, only then will you be able to gain the determination to keep pushing yourself to succeed and accomplish your goals.
Holy cow i can not believe how similar all our experiences are. Every one of these comments have forced me to reevaluate and although im still not satisfied with hotels much i do i am glad to know that i have support to get there
I understand the wish to talk to someone face-to-face. We have a local support group here in San Diego, and it is a real life-saver. I would highly recommend contacting the Narcolepsy Network national organization; they should be able to put you in touch with people near you who are interested in sharing experiences with other people with narcolepsy. You are NOT alone!!! And please trust that things can and will get better. Your life may never be perfect, but especially through talking with others, you will learn to separate which aspects of you are actually due to narcolepsy, and which are truly you. You'll be AMAZED at how much we all have in common! Wishing you all the best: http://www.narcolepsynetwork.org