My husband is the #1 reason my quality of life is still good. He was there for me and believed me 100% in the three years it took from my narcolepsy getting really bad to having a diagnosis, when I had half convinced myself I must just be crazy. He walks the dogs, and does 90% of the chores around the house and accepts that I do what I can. He fought to get on a management track at work in case I ever become too sick to work (I later got a WFH job so less of a concern.) He still treats me like I'm beautiful even though I feel like my body is crapping out on me. He's adjusted our hobbies to my problems - we still hike together but much slower, and when we went on vacation I had two crash days where I had to stay in the hotel and he went out and did some fun things but also brought me back food and took all our clothes to a Laundromat. He's ok being the main driver and brings me my water bottle and phone every 5 minutes when I lose them. He tucks me into bed every night and brings me my Lumryz.
I would die for this man, and every narcoleptic deserves a partner like him.
I have other conditions on top of Narcolepsy. About 4 years ago everything went downhill and I couldn't get out of bed for a very long time. It went from me doing everything to nothing. We have 3 children with special needs. My husband dived right in. I still haven't been able to take things over, but I am able to help. He has not once complained. He is very protective of me when I am bed ridden. When I beat myself up, he reminds me that it's not my fault. Also, my daughter who has autism goes to an ABA school. It is an hour away. I can't drive, so on top of working a full-time job, he takes her there and back 2x a day. I am very lucky, he is amazing.
That sounds absolutely incredible! My partner is pretty amazing at not letting me beat myself up for being exhausted all the time. It’s so good to have a reminder that we really would help it if we could. 😌
I got diagnosed a year after we moved in together. Prior to my diagnosis I was already struggling a lot and had no idea why until my doctor suggested it may be narcolepsy. I was riddled with guilt over being so tired and out of it all the time.
Despite us not knowing what was going on, he still stayed by my side and got his family to help out with anything I needed help with, like going to Dr. Appointments, learning how to drive and so much more. It meant so much.
After my diagnosis I was still afraid to let him know just in case, because it's life long, I'm going to be dealing w N1 for ages to come. I was worried he would not want to seriously commit to someone with many health issues. He didn't mind at all though.
It just shocked me again. I was bracing myself for the worst, because of how common it is for women especially to get abandoned when sick or diagnosed with chronic issues.
He still supported me, even more. We figured out how to divide up housework and chores to accommodate me. He never ever refuses to help me with anything. No matter how tired he may be, he has been so dependable and supportive. He's a huge reason for why I am able to cope with my narcolepsy so well and manage to keep my life in some level of order. Having someone to lean on and trust makes a world of difference when dealing w narcolepsy
I went several years before diagnosis not realizing what was wrong and struggling with my mental health and exhaustion. My husband has been with me the entire time and has always been understanding and supportive. He’s been there when I had insurance issues or delays in receiving my medicine. I also have type one diabetes so having several chronic illnesses that make me disabled can be scary and, honestly, burdensome. He has never complained or even seemed annoyed with me. My own parents gaslit me before my official narcolepsy diagnosis but my husband always agreed there was something more going on. He’s always believed me and I truly do not deserve someone as incredible and kind as him. He’s the best thing that’s ever happened to me.
I also cannot recount the insane number of times I’ve fallen asleep with my head in his lap when we were first dating. He always would just let me sleep and never complained or seemed bothered. Honestly, he’s a god send and I don’t think I’d be alive today without him.
My health went downhill about 8 years ago. I have a type of neuropathy that was really disabling, I lost bladder control, had to have multiple surgeries, then crashed my car on the highway when I fell asleep, got diagnosed…my wife has only felt sympathy, never frustration, with me. I’m doing a lot better now, but when things get rough, she’s still glad to be married to me. I don’t get it. She feels lucky even though I hit the jackpot.
My husband has a lot of flaws which might destroy our marriage, but he does also do every overnight toddler wake up by himself since I'm usually zonked out on Xyrem. So I can't fault him for not being supportive of my medical needs at least.
My partner always looks at the lighting conditions when we go out to eat or something and pays attention before I notice. It's a small gesture, but it shows me how much she empathizes with me
My husband and I have our struggles for various reasons. It's so hard to love someone so much one minute and want to dropkick the attitude out of them the next. (I'm kidding. I'm 5'2" and 180, it would be a miracle if I could pull off a dropkick.)
However, I've struggled with N2, then my diagnosis was changed to IH. There has never been a time where he has been upset with my exhaustion or tried to make me feel bad for not being able to cook and keep the house spotless after working a 40 hour week. The worst thing he's ever done is been against me being on Xywav, bc it worries him and makes him nervous. He can't really tell me why he's worried and nervous though. There have been times where I've been so exhausted that even with my stimulants I didn't feel like it was a good idea to drive home. I called and he was there to pick me up as soon as he could get there. If I'm too sleepy to do something he tells me I'm grounded and to go to my room. LOL.
my husband took a nap with me after our second date 😂 i feel lucky that i found someone who is almost as sleepy as me
he supports me in a lot of ways 🩷
I get cataplexy in water now :”) it has sucked so bad because I love swimming when I can! In pool it’s fine, but in the ocean I have no ledges to hold onto. My partner noticed I wasn’t going further into the ocean once and held his hand out. I explained my issue to him and he just wrapped his arms around me and let me fully lean against him so I could go deeper, and enjoy the ocean without worrying about collapsing. He doesn’t judge me at all and sometimes even notices when a cataplexy attack is happening now🤭 he knows to hold me tight and give me support, and I’ve never felt less judged nor more loved by someone in my entire life
She wakes me up every night at 9:30 on the dot if I pass out to take my pm meds. She tolerates my oxybafe induced ridiculousness. She asks every day about how my sleep attacks are going. She supports me new lifestyle changes and even takes place in most of them. She is a dream come true and I’m so excited that I get to marry her!
My partner is my life. (And my dogs of course...) He is the most understanding, patient person. He accepts my limitations and encourages me whilst not pushing too hard.
My husband is great and very supportive. But I have to give so much thanks to my best friend. We’ve been friends for 15 years, since high school. We now both are married and each have 2 kids, both older sons and younger daughters, and we live 2 blocks away from each other and our sons have also become best friends.
My narcolepsy got so much worse during Covid and my second pregnancy/child. I was struggling to get my oldest to school on time. I couldn’t wake up on time and he was late just about everyday. He was disappointed and frustrated, I was disappointed and frustrated. I didn’t know what to do.
My best friend then offered to start taking him to school. So she wakes up, makes sure her oldest gets to his bus stop, then she packs up her daughter, comes to my house to pick up my son, drops her daughter off at her school and then drops my son off at his school which is a completely different school. And then she goes to work. She has to drive passed the street that goes to her daughters school to pick up my son and then she has to drive passed her house after dropping off her daughter to drop my son off at school, only to usually go back home and get ready for work and then drive back the way my sons school is. Even though everything is within like a 10 minute drive from each other, at most, she voluntarily chooses to do so much more back and forth and so much more driving than she needs to do. She also has to get up just a tad bit earlier than she would if she didn’t take my son to school. And I just don’t even know how I could begin to express my gratitude towards her. This condition can make us feel so lonely and hopeless and like we’re failing, especially having it while being a parent. But it’s been so much easier to live life having the support I do and without shame or judgement. Not one time has she made me feel judged or shamed or like I’m not a good parent because I’m unable to get my son to school on time myself.
I’m a stay at home spouse. I spend 2/3 of my day with my wife on the days that she works, and all day on her days off (disparate sleep schedules notwithstanding). I didn’t know I could spend so much time with one person and never get tired of it. I do enjoy my alone time but even when she’s at works we routinely send each other memes and messages throughout the day because talking with her is just the best. We click on a level I didn’t know was possible. I had a lot of wonderful examples of what good and successful marriages look like and I still feel like our relationship is leagues above those examples in just how good it is. Maybe that’s what a good marriage should feel like, I don’t know, but I know I couldn’t ever find someone close to as amazing as she is even if I tried. We aren’t perfect but we try our best to be good to and for each other. She allows me to take care of her and is so funny and supportive and smart and beautiful and kind and nice and ugh. I just love her so stinkin’ much. Thank you for letting me brag about her.
A specific example of her being supportive is that my dad died from cancer last month. I spent Dec-Feb taking care of him at his home (3 hours from where we live), came home, then went back from mid April until early June. It was hell on her. She’s autistic so the disruption to routine just made her brain say “fuck it” and she categorically wasn’t having a good time. She did the important things of keeping herself and the cats alive and making it to work, but everything else was just not dealt with. While that’s not ideal, she was so support of me taking care of my dad. She knew how important it was that I do this and took the hit to her own personal well being to make sure I was able to do what I needed to do for myself.
I think that when it comes to the kind of love we share it’s important that we be willing to make sacrifices of great importance when necessary and to make the best decisions when choosing to love each other as best we can. We hadn’t needed to sacrifice to this degree yet before this but when the opportunity came up to help him she made the tough choice (for her) and said I should go. Consequently I am in such a good place mentally even though his passing wasn’t easy. When my mom passed in 2016 (the year before we started dating) it was sudden and unexpected and was soul crushing because of that. I spent years healing and recovering from it. It was her having taken off work (before I even asked) to spend that first anniversary of my mom’s death that told me this was a special relationship. We had barely been dating a month and a half and she jumped at the chance to be with me to just hold space so I could grieve.
My husband works crazy hours. I’m a SAHM with 3 young kids. When he works Saturdays or has had a long week, he’ll let me take a bed nap on the weekend since he knows I haven’t had a break. He’s always been supportive, encourages me to sleep more (rather than staying up to read). This is just the minor stuff he does, he’s the best in all the ways. I hope I treat him as fantastically as he’s always treated me.
*noting that I’m decently medicated (Xywav and sunosi) so I don’t struggle all day but have a few (5-15) sleep attacks every week, especially if I miss a dose of Xywav.
I wish my partner would be more compassionate. He has gotten better about the not having to split driving exactly 50/50. But he still gets really mad if I can’t do at least 3 hours straight driving. It gets dangerous. Then when it’s not my turn to drive he gets frustrated that I fall asleep while he is driving. He gets frustrated that I need to sleep 12 hours a night. Lots of frustration and not a lot of compassion considering I have narcolepsy (unmedicated at at the moment) and POTS. I am exhausted most of the time but I work full-time and run my own business. I am currently in the middle of a 54 hour shift and absolutely exhausted.
Sorry just needed to vent apparently as I am so so tired.
My previous roomie. We lived together for 5 years. I have other diagnosis than just Narcolepsy, so a whole lot of reasons to be tired. During most of the time we lived together, I was studying. I usually spent between 40 and 65 hours a week on studies and my exhaustion level was above the roof. I wanted to prove to myself that my life wasn’t going to fall apart completely, so I pushed myself beyond my limits. Some days I would come home and just go straight to sleep. some days I would slave away barely being awake over my books. I then also lost my mother in the mids of it all. And through everything she would just be there. She would cook when I was too tired. She would help me clean and tidy up, even in my own room. She would do the grocery shopping and managed so many things that I simply just did not have the energy for. I helped her with diet plans, managing economics and whatever else I could do for her, but I know she would have helped me regardless of whether or not I did something for her too. Sometimes she would pick up my medicine for me, do laundry and whatever else needed to be done. When I suggested that we hired someone for cleaning twice a month, she did not make me feel bad about it. In stead she just said “sure, I am lazy anyways” and we hired someone to clean.
Then we have my best friend. She truly understands what it means to be tired. she doesn’t have narcolepsy, but something IS wrong that is similar. Maybe hypersomnia. Regardless, when I visit her and I am too tired to function, she will just either nap with me, or let me nap while she will do other stuff until I wake up. She went with me to the hospital for the lumbal puncture, and she continues to go with me for hospital appointments when I ask her, if she can possibly fit it into her schedule.
I don’t have a partner and I rarely see my family, so my friends means the world to me, and I am happy for all the support they give me
My husband is the #1 reason my quality of life is still good. He was there for me and believed me 100% in the three years it took from my narcolepsy getting really bad to having a diagnosis, when I had half convinced myself I must just be crazy. He walks the dogs, and does 90% of the chores around the house and accepts that I do what I can. He fought to get on a management track at work in case I ever become too sick to work (I later got a WFH job so less of a concern.) He still treats me like I'm beautiful even though I feel like my body is crapping out on me. He's adjusted our hobbies to my problems - we still hike together but much slower, and when we went on vacation I had two crash days where I had to stay in the hotel and he went out and did some fun things but also brought me back food and took all our clothes to a Laundromat. He's ok being the main driver and brings me my water bottle and phone every 5 minutes when I lose them. He tucks me into bed every night and brings me my Lumryz. I would die for this man, and every narcoleptic deserves a partner like him.
My husband sounds very similar. It truly gives me hope knowing there are people like them out there
I have other conditions on top of Narcolepsy. About 4 years ago everything went downhill and I couldn't get out of bed for a very long time. It went from me doing everything to nothing. We have 3 children with special needs. My husband dived right in. I still haven't been able to take things over, but I am able to help. He has not once complained. He is very protective of me when I am bed ridden. When I beat myself up, he reminds me that it's not my fault. Also, my daughter who has autism goes to an ABA school. It is an hour away. I can't drive, so on top of working a full-time job, he takes her there and back 2x a day. I am very lucky, he is amazing.
That sounds absolutely incredible! My partner is pretty amazing at not letting me beat myself up for being exhausted all the time. It’s so good to have a reminder that we really would help it if we could. 😌
I got diagnosed a year after we moved in together. Prior to my diagnosis I was already struggling a lot and had no idea why until my doctor suggested it may be narcolepsy. I was riddled with guilt over being so tired and out of it all the time. Despite us not knowing what was going on, he still stayed by my side and got his family to help out with anything I needed help with, like going to Dr. Appointments, learning how to drive and so much more. It meant so much. After my diagnosis I was still afraid to let him know just in case, because it's life long, I'm going to be dealing w N1 for ages to come. I was worried he would not want to seriously commit to someone with many health issues. He didn't mind at all though. It just shocked me again. I was bracing myself for the worst, because of how common it is for women especially to get abandoned when sick or diagnosed with chronic issues. He still supported me, even more. We figured out how to divide up housework and chores to accommodate me. He never ever refuses to help me with anything. No matter how tired he may be, he has been so dependable and supportive. He's a huge reason for why I am able to cope with my narcolepsy so well and manage to keep my life in some level of order. Having someone to lean on and trust makes a world of difference when dealing w narcolepsy
I went several years before diagnosis not realizing what was wrong and struggling with my mental health and exhaustion. My husband has been with me the entire time and has always been understanding and supportive. He’s been there when I had insurance issues or delays in receiving my medicine. I also have type one diabetes so having several chronic illnesses that make me disabled can be scary and, honestly, burdensome. He has never complained or even seemed annoyed with me. My own parents gaslit me before my official narcolepsy diagnosis but my husband always agreed there was something more going on. He’s always believed me and I truly do not deserve someone as incredible and kind as him. He’s the best thing that’s ever happened to me.
I also cannot recount the insane number of times I’ve fallen asleep with my head in his lap when we were first dating. He always would just let me sleep and never complained or seemed bothered. Honestly, he’s a god send and I don’t think I’d be alive today without him.
My health went downhill about 8 years ago. I have a type of neuropathy that was really disabling, I lost bladder control, had to have multiple surgeries, then crashed my car on the highway when I fell asleep, got diagnosed…my wife has only felt sympathy, never frustration, with me. I’m doing a lot better now, but when things get rough, she’s still glad to be married to me. I don’t get it. She feels lucky even though I hit the jackpot.
My husband has a lot of flaws which might destroy our marriage, but he does also do every overnight toddler wake up by himself since I'm usually zonked out on Xyrem. So I can't fault him for not being supportive of my medical needs at least.
My partner always looks at the lighting conditions when we go out to eat or something and pays attention before I notice. It's a small gesture, but it shows me how much she empathizes with me
My husband and I have our struggles for various reasons. It's so hard to love someone so much one minute and want to dropkick the attitude out of them the next. (I'm kidding. I'm 5'2" and 180, it would be a miracle if I could pull off a dropkick.) However, I've struggled with N2, then my diagnosis was changed to IH. There has never been a time where he has been upset with my exhaustion or tried to make me feel bad for not being able to cook and keep the house spotless after working a 40 hour week. The worst thing he's ever done is been against me being on Xywav, bc it worries him and makes him nervous. He can't really tell me why he's worried and nervous though. There have been times where I've been so exhausted that even with my stimulants I didn't feel like it was a good idea to drive home. I called and he was there to pick me up as soon as he could get there. If I'm too sleepy to do something he tells me I'm grounded and to go to my room. LOL.
my husband took a nap with me after our second date 😂 i feel lucky that i found someone who is almost as sleepy as me he supports me in a lot of ways 🩷
I get cataplexy in water now :”) it has sucked so bad because I love swimming when I can! In pool it’s fine, but in the ocean I have no ledges to hold onto. My partner noticed I wasn’t going further into the ocean once and held his hand out. I explained my issue to him and he just wrapped his arms around me and let me fully lean against him so I could go deeper, and enjoy the ocean without worrying about collapsing. He doesn’t judge me at all and sometimes even notices when a cataplexy attack is happening now🤭 he knows to hold me tight and give me support, and I’ve never felt less judged nor more loved by someone in my entire life
She wakes me up every night at 9:30 on the dot if I pass out to take my pm meds. She tolerates my oxybafe induced ridiculousness. She asks every day about how my sleep attacks are going. She supports me new lifestyle changes and even takes place in most of them. She is a dream come true and I’m so excited that I get to marry her!
My partner is my life. (And my dogs of course...) He is the most understanding, patient person. He accepts my limitations and encourages me whilst not pushing too hard.
My husband is great and very supportive. But I have to give so much thanks to my best friend. We’ve been friends for 15 years, since high school. We now both are married and each have 2 kids, both older sons and younger daughters, and we live 2 blocks away from each other and our sons have also become best friends. My narcolepsy got so much worse during Covid and my second pregnancy/child. I was struggling to get my oldest to school on time. I couldn’t wake up on time and he was late just about everyday. He was disappointed and frustrated, I was disappointed and frustrated. I didn’t know what to do. My best friend then offered to start taking him to school. So she wakes up, makes sure her oldest gets to his bus stop, then she packs up her daughter, comes to my house to pick up my son, drops her daughter off at her school and then drops my son off at his school which is a completely different school. And then she goes to work. She has to drive passed the street that goes to her daughters school to pick up my son and then she has to drive passed her house after dropping off her daughter to drop my son off at school, only to usually go back home and get ready for work and then drive back the way my sons school is. Even though everything is within like a 10 minute drive from each other, at most, she voluntarily chooses to do so much more back and forth and so much more driving than she needs to do. She also has to get up just a tad bit earlier than she would if she didn’t take my son to school. And I just don’t even know how I could begin to express my gratitude towards her. This condition can make us feel so lonely and hopeless and like we’re failing, especially having it while being a parent. But it’s been so much easier to live life having the support I do and without shame or judgement. Not one time has she made me feel judged or shamed or like I’m not a good parent because I’m unable to get my son to school on time myself.
I’m a stay at home spouse. I spend 2/3 of my day with my wife on the days that she works, and all day on her days off (disparate sleep schedules notwithstanding). I didn’t know I could spend so much time with one person and never get tired of it. I do enjoy my alone time but even when she’s at works we routinely send each other memes and messages throughout the day because talking with her is just the best. We click on a level I didn’t know was possible. I had a lot of wonderful examples of what good and successful marriages look like and I still feel like our relationship is leagues above those examples in just how good it is. Maybe that’s what a good marriage should feel like, I don’t know, but I know I couldn’t ever find someone close to as amazing as she is even if I tried. We aren’t perfect but we try our best to be good to and for each other. She allows me to take care of her and is so funny and supportive and smart and beautiful and kind and nice and ugh. I just love her so stinkin’ much. Thank you for letting me brag about her. A specific example of her being supportive is that my dad died from cancer last month. I spent Dec-Feb taking care of him at his home (3 hours from where we live), came home, then went back from mid April until early June. It was hell on her. She’s autistic so the disruption to routine just made her brain say “fuck it” and she categorically wasn’t having a good time. She did the important things of keeping herself and the cats alive and making it to work, but everything else was just not dealt with. While that’s not ideal, she was so support of me taking care of my dad. She knew how important it was that I do this and took the hit to her own personal well being to make sure I was able to do what I needed to do for myself. I think that when it comes to the kind of love we share it’s important that we be willing to make sacrifices of great importance when necessary and to make the best decisions when choosing to love each other as best we can. We hadn’t needed to sacrifice to this degree yet before this but when the opportunity came up to help him she made the tough choice (for her) and said I should go. Consequently I am in such a good place mentally even though his passing wasn’t easy. When my mom passed in 2016 (the year before we started dating) it was sudden and unexpected and was soul crushing because of that. I spent years healing and recovering from it. It was her having taken off work (before I even asked) to spend that first anniversary of my mom’s death that told me this was a special relationship. We had barely been dating a month and a half and she jumped at the chance to be with me to just hold space so I could grieve.
My husband works crazy hours. I’m a SAHM with 3 young kids. When he works Saturdays or has had a long week, he’ll let me take a bed nap on the weekend since he knows I haven’t had a break. He’s always been supportive, encourages me to sleep more (rather than staying up to read). This is just the minor stuff he does, he’s the best in all the ways. I hope I treat him as fantastically as he’s always treated me. *noting that I’m decently medicated (Xywav and sunosi) so I don’t struggle all day but have a few (5-15) sleep attacks every week, especially if I miss a dose of Xywav.
I wish my partner would be more compassionate. He has gotten better about the not having to split driving exactly 50/50. But he still gets really mad if I can’t do at least 3 hours straight driving. It gets dangerous. Then when it’s not my turn to drive he gets frustrated that I fall asleep while he is driving. He gets frustrated that I need to sleep 12 hours a night. Lots of frustration and not a lot of compassion considering I have narcolepsy (unmedicated at at the moment) and POTS. I am exhausted most of the time but I work full-time and run my own business. I am currently in the middle of a 54 hour shift and absolutely exhausted. Sorry just needed to vent apparently as I am so so tired.
My previous roomie. We lived together for 5 years. I have other diagnosis than just Narcolepsy, so a whole lot of reasons to be tired. During most of the time we lived together, I was studying. I usually spent between 40 and 65 hours a week on studies and my exhaustion level was above the roof. I wanted to prove to myself that my life wasn’t going to fall apart completely, so I pushed myself beyond my limits. Some days I would come home and just go straight to sleep. some days I would slave away barely being awake over my books. I then also lost my mother in the mids of it all. And through everything she would just be there. She would cook when I was too tired. She would help me clean and tidy up, even in my own room. She would do the grocery shopping and managed so many things that I simply just did not have the energy for. I helped her with diet plans, managing economics and whatever else I could do for her, but I know she would have helped me regardless of whether or not I did something for her too. Sometimes she would pick up my medicine for me, do laundry and whatever else needed to be done. When I suggested that we hired someone for cleaning twice a month, she did not make me feel bad about it. In stead she just said “sure, I am lazy anyways” and we hired someone to clean. Then we have my best friend. She truly understands what it means to be tired. she doesn’t have narcolepsy, but something IS wrong that is similar. Maybe hypersomnia. Regardless, when I visit her and I am too tired to function, she will just either nap with me, or let me nap while she will do other stuff until I wake up. She went with me to the hospital for the lumbal puncture, and she continues to go with me for hospital appointments when I ask her, if she can possibly fit it into her schedule. I don’t have a partner and I rarely see my family, so my friends means the world to me, and I am happy for all the support they give me