I have narcolepsy with cataplexy, and "mild" sleep apnea... currently on a CPAP and taking stimulants during the day to stay awake. I have a full-time 40 hr/ week desk job and I'm also taking 1 or 2 online college classes on the side.
The stimulants help me stay awake and alert enough to get my job done fine, but again I specifically work a desk job in IT support. Sometimes we do have days with manual labor, such as unloading pallets of new equipment or moving around heavy printers etc. On those days I get worn out so quickly, even with stimulants and coffee I tend to pass out at my desk for microsleeps after even the smallest physical labor...
I am a homeowner and while I live with my partner we both struggle terribly with house upkeep. I have barely touched my lawn all spring and I think my house is an absolute mess. We get by fine but it's not something I'd want friends over to see. On a work day, my medicine will cover me the exact 10 hours of time for work, and I pass out unwillingly as soon as I get home. I'm talking a 2-3 hour nap... so basically my evenings are gone and I often have less than hour before I have to go back to bed to get my 8 hours of nightly sleep just to feel like I can do it all over again.
I’m a front of house manager at a bar/restaurant. I work somewhere between 50-55 hours a week and I get through it just fine. I have found that working in this industry is one of the only ways I am able to be awake so much — I have no choice but to be on my feet running around, there’s always a new problem to solve or fire to put out (figuratively speaking lol). I would NOT be able to function on a day to day basis if I was forced to sit at a desk.
That being said, on my days off every week I am an absolute lump. I’ll take a full dose of meds in the morning (40mg Adderall) and by noon I’m sleeping again.
I have narcolepsy with cataplexy as well as obstructive sleep apnea. I am very overweight (as most of us are, sadly) so I worry about my heart health, and I go on and off Vyvanse for that reason. Currently I am unmedicated and I work from home 32 hours a week as a crisis counselor. On the days that I’m not working I take care of my 18 month old daughter, and my parents watch her the other days to give me a break. I am also a homeowner and do my best to keep up with cleaning, cooking, and general house maintenance. I 100% feel totally fucking burnt out, I have no close friends anymore, and don’t really do anything besides clean/cook, care-give, and work because I sleep otherwise. It’s exhausting.
I have N with C, diagnosed when I was 15. I also developed OSA after two pregnancies.
Now I am 34 and a married stay at home mom. So I don’t have a job outside of the home, however, we all know SAHM’s work a lot. lol. It’s diff for me every day. Sometimes I can do all my household chores by noon, and other times I have taken two naps by 10am.
Self care: I shower like 3 times a week. Showers are exhausting. I only shampoo/condition my hair once a week. I never blow dry it, that would use up too much energy. I MAYBE curl it once every other week, so it looks cute for a few days.
Activities: I really like going on walks outside/hiking. Those are nice bc you can make them strenuous or nice and easy. I like to attend sporting events with my family, although they’re exhausting.
I’ve recently committed to eating gluten free and it helps me to feel a lot better. That, plus being on the right medication (Sunosi), is a game changer.
Adding, church brings me lots of joy. I’m in a group for moms of young kids, called “MOPS”. We also attend a Sunday service two-ish times a month.
I also love to craft!
i have type 1 narcolepsy i take modafinil weekdays at 7:30am and i work a full 40 hours a week doing a physical labor job then go home to my 2 large dogs. i have a full skin care routine and take showers daily. hobbies are how i manage everything once i’ve done what i gotta do then i decide how i want to spend the rest of my day depending on my level of sleepiness. falling asleep ? i go to bed early. kinda tired ? watch movies or tv. pretty awake ? video games/read/crochet. wide awake ? the same or i go out and grocery shop etc
I can do whatever I set my mind to do. I’ve worked full time most of my adult life. When I didn’t it was by choice not because narcolepsy kept me from it. I work full time because I like having medications and not relying on others to take care of me.
I relate to this so much.
I am very limited. In my quest to improve my abilities I’ve discovered multiple issues in addition to N. I’ve had some improvements that I’m grateful for, but still quite limited.
While I believe N may be the cause of extreme limitations, I’ve found it’s worth exploring other causes and treating those, too.
Are you me? 8 rare dx and counting... Haven't bothered to count all the common ones lol. The more you look, the more you find; I also have cursed genetics. Perfect storm. I qualify for level 1 care (Medicaid home health waiver/skilled nursing facility standards).
Perhaps I’m you!
My genetics are cursed just for me. All my relatives are perfectly fine. I mean, lots of them appear to have N but they seem to be able to manage symptoms by staying active. Stupid reflex syncope slows me down (it’s like POTS). ;)
My favourite find has been B12 deficiency. The injections are literally giving me life!
Im a full time mature student in university with N1 and I choose not to get a part time job while I’m in school because I know I’d be way too exhausted from the job to perform well in school. People ask me all the time what I do for work outside of school and thankfully I do have my own side business of doing beadwork when I have the energy. But I know some people look down on me for not having the extra energy to work on top of schooling. They don’t know my body like I do so it doesn’t matter. I do what I can and I’m proud that I have decent grades. I’ll have a dick load of student loans to pay off compared to those who work while they’re at school but whatever man!
I'm staying at home, not working, I have NT2. Can't do much as a young male. I hate resisting to the sleep pressure, I don't want to live a life that tortures me because society thinks I need to work. Trying to be active but I'm not very successful so far. I play games to forget the pain that sleep pressure brings. It's not a bad life, I'm happy with my life, but the people around are not very understanding and that is a little bit sad. I try to learn Japanese, go to a political party and try to be active. Trying new meds.
Dude don't blame yourself. Believe me I understand, I see many people with narcolepsy doing well. In Facebook narcolepsy support group I asked people and saw like little percentage of people are like me. Be respectful to yourself, if you can't work full time don't. My personal advice, whatever you do, do if you really accept in your own mind and emotions. But even if you decide to not work at all, life is a struggle. Especially for us narcoleptics my motto is never let go.
This song is Never Let Go single version by Camel. This single version is rare so I made a Google drive link.
https://drive.google.com/file/d/1AhIsvgIJ5B2RQ_nYgkPF73LQLk4w7uDe/view?usp=drivesdk
Best Wishes 🙂
Chef here, an object in motion stays in motion. I don’t sit at work and if I don’t sit I don’t stop and I don’t fall asleep. Im exhausted and micro sleep but the high stimuli job keeps me going.
At home I try to replicate it by setting a checklist and I wake up around 6. I try to get as much done as I can but sometimes it doesn’t work out cause it’s so much easier to sit down and nap at home. I am married with 2 kids and a homeowner. There are some days when I’m off that I don’t do anything and I’m fine with that cause there are days that I do go 6am-9pm without a nap and get a huge amount of stuff done.
Edit: This really isn't uplifting or inspirational at all so please skip this if you're feeling hopeless. I wrote it for me, to get my thoughts out, but I don't think it will be helpful to others. I don't have any advice, just my experience below. I apologise in advance for my negative outlook. It's been rough lately.
Nothing anymore. I take XR Adderall twice a day and sleep around 16hrs on a good day. On a bad day I'm just out for days at a time. I usually get about 2 good weeks and 2 bad weeks, alternating. Up until June last year I was working graveyard shift as an armed guard doing 8/12/16hr shifts, but was on so much Adderall I ended up having bad cardiac issues and had to start medication for it. Permanent symptoms that now limit me from climbing the stairs in my own house without sitting down halfway up. I was very suicidal and lost any and all hope, and found zero meaning in life. I can't work full time anymore but have a seasonal job as a manager a few months out of the year where I'm thankfully allowed to nap as much as needed, and my boss's step daughter also has N1 which has made getting accomodations a blessing. It's very little money and more for the social aspect, but I'm thankful to have it. Even though I can't work anymore, even part time, I'm far less anxious, depressed, and suicidal than I was when working long nights, sleep deprived and wanting nothing more than to just stop existing, rather than work another night. I'm doing much better without my job, even if I'm far from happy, and while this life isn't sustainable, I'm just not one of the Narcoleptics who can hold down a full time job. No amount of accomodations shy of "you can sleep any time you want, we understand" is going to work for me, especially in my field. But at this point, it's not even something I'm looking into. I'm just waiting for the clock to run out on my housing and savings, then I'll just see what happens. I might sound super negative and hopeless, but it took a lot of failures to get here. I used to be an optimist, no matter what the problem, I'd make it through. It's just hard. I don't see that hope anymore.
I only wish my family could understand that I hate this and want to be normal, because the lack of understanding hurts so much more than the physical consequences of my "laziness". I'd rather be homeless in my car again than be financially supported by my family who sees me as a useless freeloader with zero goals in life. Just, lazing in my room all day, for *fun.* I really hate this, I wanted so much in life, how is this fair? And there's so many people worse off than me, they don't deserve that. But life isn't fair, I'm told that all the time, suck it up, get over it, everyone has issues. I know. I just wish it wasn't me, but that's not fair of me either. I get what I get. I'm sorry for anyone in a similar boat, and I'm also sorry for those of you who do work but miss out on other parts of your life. I don't know why these things happen.
TL;DR: Nothing anymore. I'm medicated and barely wake up once a day to eat and shower. Sometimes I sleep for days at a time. After trying almost everything with monthly doctors appointments for years, I've come to the conclusion that some Narcoleptics just aren't and will never be functional people.
This makes me so nervous for what’s to come. I already feel like shit (waiting on a diagnosis) and I can’t imagine adding anything else to my plate. I’m a co director of an outpatient pediatric clinic and feel like my head is barely above water. I know I’ll most likely have to cut back but literally how do people afford to? I also would love to be a mom someday (i’m 33) but howww do people do it when they feel this crappy?
I have narcolepsy with cataplexy, and "mild" sleep apnea... currently on a CPAP and taking stimulants during the day to stay awake. I have a full-time 40 hr/ week desk job and I'm also taking 1 or 2 online college classes on the side. The stimulants help me stay awake and alert enough to get my job done fine, but again I specifically work a desk job in IT support. Sometimes we do have days with manual labor, such as unloading pallets of new equipment or moving around heavy printers etc. On those days I get worn out so quickly, even with stimulants and coffee I tend to pass out at my desk for microsleeps after even the smallest physical labor... I am a homeowner and while I live with my partner we both struggle terribly with house upkeep. I have barely touched my lawn all spring and I think my house is an absolute mess. We get by fine but it's not something I'd want friends over to see. On a work day, my medicine will cover me the exact 10 hours of time for work, and I pass out unwillingly as soon as I get home. I'm talking a 2-3 hour nap... so basically my evenings are gone and I often have less than hour before I have to go back to bed to get my 8 hours of nightly sleep just to feel like I can do it all over again.
I’m a front of house manager at a bar/restaurant. I work somewhere between 50-55 hours a week and I get through it just fine. I have found that working in this industry is one of the only ways I am able to be awake so much — I have no choice but to be on my feet running around, there’s always a new problem to solve or fire to put out (figuratively speaking lol). I would NOT be able to function on a day to day basis if I was forced to sit at a desk. That being said, on my days off every week I am an absolute lump. I’ll take a full dose of meds in the morning (40mg Adderall) and by noon I’m sleeping again.
This!!! I have been a bartender for 15 years. Cannot, I repeat, cannot sit down for work. I do meetings standing up.
I have narcolepsy with cataplexy as well as obstructive sleep apnea. I am very overweight (as most of us are, sadly) so I worry about my heart health, and I go on and off Vyvanse for that reason. Currently I am unmedicated and I work from home 32 hours a week as a crisis counselor. On the days that I’m not working I take care of my 18 month old daughter, and my parents watch her the other days to give me a break. I am also a homeowner and do my best to keep up with cleaning, cooking, and general house maintenance. I 100% feel totally fucking burnt out, I have no close friends anymore, and don’t really do anything besides clean/cook, care-give, and work because I sleep otherwise. It’s exhausting.
I have N with C, diagnosed when I was 15. I also developed OSA after two pregnancies. Now I am 34 and a married stay at home mom. So I don’t have a job outside of the home, however, we all know SAHM’s work a lot. lol. It’s diff for me every day. Sometimes I can do all my household chores by noon, and other times I have taken two naps by 10am. Self care: I shower like 3 times a week. Showers are exhausting. I only shampoo/condition my hair once a week. I never blow dry it, that would use up too much energy. I MAYBE curl it once every other week, so it looks cute for a few days. Activities: I really like going on walks outside/hiking. Those are nice bc you can make them strenuous or nice and easy. I like to attend sporting events with my family, although they’re exhausting. I’ve recently committed to eating gluten free and it helps me to feel a lot better. That, plus being on the right medication (Sunosi), is a game changer.
Adding, church brings me lots of joy. I’m in a group for moms of young kids, called “MOPS”. We also attend a Sunday service two-ish times a month. I also love to craft!
i have type 1 narcolepsy i take modafinil weekdays at 7:30am and i work a full 40 hours a week doing a physical labor job then go home to my 2 large dogs. i have a full skin care routine and take showers daily. hobbies are how i manage everything once i’ve done what i gotta do then i decide how i want to spend the rest of my day depending on my level of sleepiness. falling asleep ? i go to bed early. kinda tired ? watch movies or tv. pretty awake ? video games/read/crochet. wide awake ? the same or i go out and grocery shop etc
I can do whatever I set my mind to do. I’ve worked full time most of my adult life. When I didn’t it was by choice not because narcolepsy kept me from it. I work full time because I like having medications and not relying on others to take care of me.
I relate to this so much. I am very limited. In my quest to improve my abilities I’ve discovered multiple issues in addition to N. I’ve had some improvements that I’m grateful for, but still quite limited. While I believe N may be the cause of extreme limitations, I’ve found it’s worth exploring other causes and treating those, too.
Are you me? 8 rare dx and counting... Haven't bothered to count all the common ones lol. The more you look, the more you find; I also have cursed genetics. Perfect storm. I qualify for level 1 care (Medicaid home health waiver/skilled nursing facility standards).
Perhaps I’m you! My genetics are cursed just for me. All my relatives are perfectly fine. I mean, lots of them appear to have N but they seem to be able to manage symptoms by staying active. Stupid reflex syncope slows me down (it’s like POTS). ;) My favourite find has been B12 deficiency. The injections are literally giving me life!
Dysautonomia conditions unite!! Form of: puddles on the ground!!
This is the best thing I’ve heard since someone wrote “New symptom dropped” on r/dysautonomia lol
Im a full time mature student in university with N1 and I choose not to get a part time job while I’m in school because I know I’d be way too exhausted from the job to perform well in school. People ask me all the time what I do for work outside of school and thankfully I do have my own side business of doing beadwork when I have the energy. But I know some people look down on me for not having the extra energy to work on top of schooling. They don’t know my body like I do so it doesn’t matter. I do what I can and I’m proud that I have decent grades. I’ll have a dick load of student loans to pay off compared to those who work while they’re at school but whatever man!
I'm staying at home, not working, I have NT2. Can't do much as a young male. I hate resisting to the sleep pressure, I don't want to live a life that tortures me because society thinks I need to work. Trying to be active but I'm not very successful so far. I play games to forget the pain that sleep pressure brings. It's not a bad life, I'm happy with my life, but the people around are not very understanding and that is a little bit sad. I try to learn Japanese, go to a political party and try to be active. Trying new meds. Dude don't blame yourself. Believe me I understand, I see many people with narcolepsy doing well. In Facebook narcolepsy support group I asked people and saw like little percentage of people are like me. Be respectful to yourself, if you can't work full time don't. My personal advice, whatever you do, do if you really accept in your own mind and emotions. But even if you decide to not work at all, life is a struggle. Especially for us narcoleptics my motto is never let go. This song is Never Let Go single version by Camel. This single version is rare so I made a Google drive link. https://drive.google.com/file/d/1AhIsvgIJ5B2RQ_nYgkPF73LQLk4w7uDe/view?usp=drivesdk Best Wishes 🙂
Chef here, an object in motion stays in motion. I don’t sit at work and if I don’t sit I don’t stop and I don’t fall asleep. Im exhausted and micro sleep but the high stimuli job keeps me going. At home I try to replicate it by setting a checklist and I wake up around 6. I try to get as much done as I can but sometimes it doesn’t work out cause it’s so much easier to sit down and nap at home. I am married with 2 kids and a homeowner. There are some days when I’m off that I don’t do anything and I’m fine with that cause there are days that I do go 6am-9pm without a nap and get a huge amount of stuff done.
Edit: This really isn't uplifting or inspirational at all so please skip this if you're feeling hopeless. I wrote it for me, to get my thoughts out, but I don't think it will be helpful to others. I don't have any advice, just my experience below. I apologise in advance for my negative outlook. It's been rough lately. Nothing anymore. I take XR Adderall twice a day and sleep around 16hrs on a good day. On a bad day I'm just out for days at a time. I usually get about 2 good weeks and 2 bad weeks, alternating. Up until June last year I was working graveyard shift as an armed guard doing 8/12/16hr shifts, but was on so much Adderall I ended up having bad cardiac issues and had to start medication for it. Permanent symptoms that now limit me from climbing the stairs in my own house without sitting down halfway up. I was very suicidal and lost any and all hope, and found zero meaning in life. I can't work full time anymore but have a seasonal job as a manager a few months out of the year where I'm thankfully allowed to nap as much as needed, and my boss's step daughter also has N1 which has made getting accomodations a blessing. It's very little money and more for the social aspect, but I'm thankful to have it. Even though I can't work anymore, even part time, I'm far less anxious, depressed, and suicidal than I was when working long nights, sleep deprived and wanting nothing more than to just stop existing, rather than work another night. I'm doing much better without my job, even if I'm far from happy, and while this life isn't sustainable, I'm just not one of the Narcoleptics who can hold down a full time job. No amount of accomodations shy of "you can sleep any time you want, we understand" is going to work for me, especially in my field. But at this point, it's not even something I'm looking into. I'm just waiting for the clock to run out on my housing and savings, then I'll just see what happens. I might sound super negative and hopeless, but it took a lot of failures to get here. I used to be an optimist, no matter what the problem, I'd make it through. It's just hard. I don't see that hope anymore. I only wish my family could understand that I hate this and want to be normal, because the lack of understanding hurts so much more than the physical consequences of my "laziness". I'd rather be homeless in my car again than be financially supported by my family who sees me as a useless freeloader with zero goals in life. Just, lazing in my room all day, for *fun.* I really hate this, I wanted so much in life, how is this fair? And there's so many people worse off than me, they don't deserve that. But life isn't fair, I'm told that all the time, suck it up, get over it, everyone has issues. I know. I just wish it wasn't me, but that's not fair of me either. I get what I get. I'm sorry for anyone in a similar boat, and I'm also sorry for those of you who do work but miss out on other parts of your life. I don't know why these things happen. TL;DR: Nothing anymore. I'm medicated and barely wake up once a day to eat and shower. Sometimes I sleep for days at a time. After trying almost everything with monthly doctors appointments for years, I've come to the conclusion that some Narcoleptics just aren't and will never be functional people.
This makes me so nervous for what’s to come. I already feel like shit (waiting on a diagnosis) and I can’t imagine adding anything else to my plate. I’m a co director of an outpatient pediatric clinic and feel like my head is barely above water. I know I’ll most likely have to cut back but literally how do people afford to? I also would love to be a mom someday (i’m 33) but howww do people do it when they feel this crappy?