7 replies to this topic

[lovelife]

I was just diagnosed in January with N. I feel like I see a difference now on my medication but I wonder if it really is the medication or if I'm using N as an excuse. I have a terribly hard time on days where I don't take my meds or when I'm just having a really rough day and the meds aren't doing much. I feel so unmotivated I could sit and do nothing for hours. The day just slips away. I am also a grad student and I've noticed on bad days I can sit through a whole class and not really remember what went on. I'll come back the next week and be so lost, just as if I hadn't been to the last class at all.

Like I said, I feel like it has gotten better with the meds, but I am curious if this is normal for N or if I have dug myself a little hole of laziness. Feel free to be honest. If it isn't a typical symptom I'd like to know so I can stop blaming N and start working toward fixing the problem in another fashion.

[Sunrise]

I struggle with this issue too. I have been going downhill over the years. I probably had N at least by my mid teens, but it started earlier. I was diagnosed last year. The meds helped, but the side effects cause additional problems. I am med free today and I'm wondering whether it was a good idea. Yikes!

There are all of these things you want to do, but don't have the energy to accomplish. What I have been doing for years is cutting out parts of life, bit by bit, in order to focus on the important things. At a certain point, I started cutting out important things. Lately, I have just struggled with doing basic activities, like cooking and paying bills. I don't know what happened to the more energetic me, the one who did well in school and graduated college. I wanted to go to grad school too, but I was tired then and had anxiety issues etc. I thought how could I handle getting in. How could I handle a career when I am this tired and sleepy? Why waste money and time? Now, I wish I had at least tried. I would have at least attempted to follow my dream. Now, I'll never even have that.

All I know is that when I was laid off recently, things didn't get easier, they got harder. It may be the lack of stress and "forced" work. Now, I can relax, which makes me even less energetic. So it seems like the less I do, the worse it gets. Doing too much can be overkill and cause rebound too. But doing too little, it is like my body knows this and sees it as an opportunity to sleep anyway it can: microsleep, C, whatever. I feel like I'm falling apart. And I'm too afraid to do normal things for fear that it will make me too tired, sleepy or give me some mild C. The whole time flying thing has gotten worse of the years. It used to be that the weekend seemed so far away. Then, it became not a big deal because the weeks went by so quickly. A week is nothing.

You should be very proud of being in grad school. Keep it up. Just take one day at a time and keep going. Don't stop because it is harder to start up again.

[thecatnapper]

I don't know how old you guys are but I just got diagnosed at age 35 after suffering for over 13 years with major symptoms. During that time I lost nearly all of my "friends" and my last job because other people labeled me as lazy and said I felt bad because I chose to have a bad attitude which is partly true but was never any of their business. I am not an open complainer and have rarely discussed my symptoms with anyone and a few that I did tell went around and stirred up gossip based on what they assumed. So for many years I believed what others said and I too called myself a lazy loser even though I knew beyond any doubt that something was physically wrong with me. Even all of the doctors that I went to believed it was "all in my head" which, technically, I guess it was but not in the way they meant. I just kept telling myself that I could do better if I tried.

After I had to quit work I was constantly beating myself up because I felt that I wasn't contributing to society anymore and got so depressed that I tried to kill myself but thankfully I was not successful. Fortunately I got sick of feeling bad all the time (emotionally) and did a lot of hard work on my thinking and my view of myself and the world around me. Finally I learned to accept whatever my issue was as being part of me and I had to forgive people that had said bad things because I know that many of them did so out of fear and ignorance. It took a long time to be able to say that I love myself in spite of what has become of my social life and finances. I know exactly what you mean about wanting to do great things but not having the energy to follow through. I am very intelligent and kind hearted and for several years I have wanted to open a shelter for the homeless and under priveledged that would give community support to help these people get back on their feet. I'm full of the passion to do it but most days I lack the energy to even walk down to check my mailbox. I'm hopeful that once I can start Xyrem that I'll get some energy back and at least be able to get back to volunteering again.

I still have issues with people gossiping about me such as the people that I used to volunteer with and old friend who think I've "let myself go" because of all the weight that I've gained in the past 3 years. It's hard for people to believe that something is wrong with us when we look healthy. Times like this are when you find out who your real friends are. But anyway, my long winded point is that as long as you accept and love yourself it doesn't matter what society thinks of you. You know that you do all you can and that's what matters. As far as the number of people you have in your life that do support you...quality outweighs quantity any day.

[Megssosleepy]

I have suffered with N since my teens as well... I think before i was diagnosed a little over 6 months ago I thought it was normal to feel like I do, and I was always blamed by my drs. family, and "friends". Always said it was my fault... I needed to do this or that... I am not a lazy person at all, I get what I need to get done, done... most of the time. Recently I have been very discouraged in my search to find the right drug to get me though the day. I feel like I have become so much less motivated to do anything. I am sitting here at work attempting to stay awake by reading these forums... not getting anything done, but its not because I am lazy... I am just so damn tired!

Part of me is relieved to hear about others struggling... but then again not so much, cuz I know how crappy it can feel. Its crazy how many people have passed through my life, because I just dont have the energy to try... and then i get grumpy... why do i have to try in the first place?

So I guess it can go both ways... if you were tested and have the symptoms then you are N, but i think that having that diagnosis can make it harder to keep pushing... for me its almost like I give up... no matter what I do I am always going to feel this way... no diet, life style change, or sleeping more is going to change it! Maybe its just a hump I/We need to get past. If only I knew how!

Sorry to be scattered... I am having a supper sleepy day... and already seem to have lost some parts of the day lol

[deoir]

@lovelife, I felt like I was reading my own story!

Very sleepy for more than 10 years but only diagnosed IH (Doc thinks it could still be N) a month ago and started 250mg Nuvigil immediately. EDS and SP almost disappeared but then I started feeling extra jumpy and had a few panic attacks where I shook uncontrollably for around 30 minutes.

Background in a nutshell: 2nd year grad student in a biomed research lab, lost my mom to a brain aneurysm a year ago, mourned her first "anniversary" a couple of weeks ago, have a family falling apart because of Mom's death, have a crazy aunt (Mom's younger sister who was very close to her) as the worst-houseguest-in-the-world (e.g. letting her dog pee 20 times on my couch because precious baby just had surgery and couldn't possibly lie down on the floor) and have a PhD qualifying exam at the end of this month.

Ever since the diagnosis/Nuvigil, I've lost motivation to finish writing my grant proposal, which is part of the exam requirement and technically due in 3 days. I don't know if it's because I've become lazy now that I know I have a valid medical reason for the crazy sleepiness or if it's really a med side effect. What's definite is that I haven't had panic attacks in 6 years (twice that year and never before) and ever since Nuvigil, I've had at least 2 attacks plus crazy high anxiety levels. Doc thinks it's the stress/med combo causing all that but he doesn't want me to switch to amphetamines till my stress levels come down because those meds have a higher risk of increased anxiety. Every time I try to open the proposal Word file, I start to panic so I have to stop and calm down.

Thing is, boss isn't happy with my performance anymore. I had to explain over and over that I was grieving my mom and that I'd just gotten the dx/med which may have caused panic attacks and I need time to adjust. He suggested that I quit grad school because of my "health problems" and told me that I'm not working as hard as "normal grad students" should. I explained my situation again but I realized after that meeting that I was irritated with him. No, I'm not working as hard as other students but other students don't have medical conditions. More importantly, other students get a month or two off lab work to focus on writing their proposals and studying for the qual exams but he was expecting me to continue to work at least a full 5-day week and write my proposal in my free time, whether at work or at home.

I don't believe in self-pity but I do think that he's holding me to a standard equal to or higher than other students despite knowing about my IH. Do you guys think it would be fair for me to ask him to postpone my quals to October and allow me 8 weeks unpaid leave to spend time with my family so we can heal and to let me adjust to/switch my med?

Push to shove, I'm sure Boss would be very happy if I move into lab and sponge bath in the ladies' room. Free rent for me!

[bingisking]

This is exactly what I've been going through. I was diagnosed about three months ago, but I've had symptoms my entire life, which apparently is strange since N usually sets on in the teen years. As a child, my stepfather would punish me for going to sleep before dinner all the time, my real dad would guilt me saying that I was wasting his visitation time, my peers would make fun of me because I had a horrible time keeping off weight with how much I was sleeping, and my mom just didn't know what to do except try to encourage me to stay up. In school, I was able to stay awake most of the time but couldn't pay attention, and by the time I got home at night, there was nothing left of me for things like homework or projects. My teachers would say I just wasn't applying myself, or that I was too lazy or unorganized to do the work and I spent most of my school years failing or hanging by a thread. Now I finally have my diagnosis, but even with the meds it's been hard which brings me back to my and your original question. "Am I really this tired, or is this a habit and a crutch?" I watch my family doing chores around the house, and I feel guilty that I can't muster up the energy to help. It takes me days to do an assignment that should have taken an hour (I'm in online college courses) and if I make it to the shower, it's an accomplishment. With the meds it's like, ok, now I'm awake, but that's about it. It's almost worse now because before I was sleeping through my time. Now it's just hours and hours of being awake but not being able to do anything. it really is the most gut wrenching feeling of guilt. I'm hoping that with the meds, time, and acceptance, things will get a little better. Just know that you are NOT alone with these feelings!

[DeathRabbit]

This is exactly what I've been going through. I was diagnosed about three months ago, but I've had symptoms my entire life, which apparently is strange since N usually sets on in the teen years. As a child, my stepfather would punish me for going to sleep before dinner all the time, my real dad would guilt me saying that I was wasting his visitation time, my peers would make fun of me because I had a horrible time keeping off weight with how much I was sleeping, and my mom just didn't know what to do except try to encourage me to stay up. In school, I was able to stay awake most of the time but couldn't pay attention, and by the time I got home at night, there was nothing left of me for things like homework or projects. My teachers would say I just wasn't applying myself, or that I was too lazy or unorganized to do the work and I spent most of my school years failing or hanging by a thread. Now I finally have my diagnosis, but even with the meds it's been hard which brings me back to my and your original question. "Am I really this tired, or is this a habit and a crutch?" I watch my family doing chores around the house, and I feel guilty that I can't muster up the energy to help. It takes me days to do an assignment that should have taken an hour (I'm in online college courses) and if I make it to the shower, it's an accomplishment. With the meds it's like, ok, now I'm awake, but that's about it. It's almost worse now because before I was sleeping through my time. Now it's just hours and hours of being awake but not being able to do anything. it really is the most gut wrenching feeling of guilt. I'm hoping that with the meds, time, and acceptance, things will get a little better. Just know that you are NOT alone with these feelings!

Yeah, I quite frequently feel like a horrible human being. I mean, I think I have character defects to begin with most likely. Narcolepsy just exacerbates the issue. I was always a tad lazy even when I felt great. Now, I am like, uber lazy. My mom called last night and I just let it go to voicemail because I didn't feel energetic enough to have a conversation. It's hard to know what is just me being lazy and what is the condition. I don't want to just give myself a pass for everything, because I will just melt into a useless puddle of ooze. But my mood really suffers if I start kicking my own ass too much and try to go above and beyond what a narcoleptic can do. If I attempt to concentrate for hours on end at work like I used to could, I end up making myself derpier and usually get a headache. Then I get depressed at my inability to perform up to par. Man is unique in the ability that he can change his own mind and character. He is not simply the victim of electrochemical circumstance. However, imbalances and dysautonomias do stack the odds against one. At the end of the day, I figure if I always strive to just be one iota better tomorrow than I was today, I'll be doing alrite.

[LauraL]

unmotivated I could sit and do nothing for hours. The day just slips away. I am also a grad student and I've noticed on bad days I can sit through a whole class and not really remember what went on. I'll come back the next week and be so lost, just as if I hadn't been to the last class at all.

Is it possible that you are experiencing some depression? What you describe sounds a lot like what I was feeling in graduate school. Eventually, I was diagnosed with clinical depression. Was very surprised when my doctor pulled out the DSM and read me the symptoms--it had never occurred to me that I was suffering from depression, because I wasn't sad. Just felt really unmotivated, had a hard time concentrating, lost interest in things, etc. My depression was well controlled with medication and therapy. I've had "episodes" in the intervening years where symptoms pop up, but I have a whole toolkit now of strategies to help deal with it.

My N/IH diagnosis is pretty recent, and it's been hard in a lot of ways--frankly sometimes I no longer can tell if a particular symptom is mood-related or sleep-related. And the meds can play off of each other in weird ways. My doctor just switched my antidepressant, because it was causing additional drowsiness. But with the new one I'm having some anxiety/difficulty concentrating. It's also frustrating because I have a neurologist for the N/IH issues and a pyschiatrist for the depression/anxiety issues--both doctors prescribe meds that act on related neurotransmitter pathways, and yet the doctors never talk to one another to coordinate.

I do think it is a delicate balancing act between cutting yourself some slack when you don't feel well, and letting the illness become an excuse to not try. Sometimes I'm convinced I'd be happier if I were forcing myself to do more, and sometimes my body makes it quite clear that I've over-exerted myself. I don't think there's an easy answer, but I've gotten better over the years at knowing myself, and I guess that's all I can really do, right? I remember once talking to a counselor about how tired I was of fighting against not feeling well--of doing things to help me feel better (exercise, happy thoughts, meditation) when all I really wanted to do was curl up in a ball and stare at the ceiling. I was terrified that if I gave in to the "stare at the ceiling" urge, I'd just slip deeper and deeper into depression. She helped me realize that the more likely result of giving into the urge to do nothing was that after a while I'd get bored of it, and feel like fighting to stay positive again. I tried it out, and she was right! It's been kind of empowering, because now I realize that giving into the tiredness sometimes won't make it a permanent occurrence.

Good luck! Take care of yourself.