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Narcolepsy And Insomnia


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#1 basil44

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Posted 02 March 2013 - 05:55 PM

Does anyone have N and Insomnia? I have terrible insomnia, like I won't sleep for days. Since I have been on Nuvigil, things have improved greatly, but I still struggle.



#2 sk8aplexy

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Posted 02 March 2013 - 09:17 PM

When I have any stresses and/or anxieties, that is either prior to attempting to fall sleep or for instance regarding some upcoming thing, I definitely have insomnia.

Even if I have some appointment or scheduled thing which is coming up, especially if such is to be early or even in the morning.

If I have a trip or some excursion upcoming, I'll have a seriously hard time getting to sleep.

If I've done some intense sport activity at night, it is hours usually before I can fall asleep, unless I go into the sport activity already tired then I may be asleep immediately afterward.

If and/or when, I try to set an alarm for a short nap, I won't be able to get to sleep, unless I'm already nodding out (yet setting the alarm is hard at that point).

Usually a nap for me is 2 to 3 hours, never short unless I'm awoken for some odd reason (phone).

 

Though, I do tend to go right to sleep, but really only do so when I feel able to sleep.  In that I try to sleep around the same hours, maintaining a regular pattern as much as possible. 

Throwing that off can wreak consequence/s. 

 

I do not take stimulants or xyrem nor other meds. 

I do drink around 16oz of coffee soon after awakening each day, sometimes I'll have one in the afternoon but not often.

I live a very mellow life, that is to say I do not work and I do not hardly attempt to socialize as such is always painful and stressful (no one begins to understand the complexity of having Cataplexy, and more so why/how I must live in order to minimize such); so being stress and anxiety free is the biggest crucial factor along with a solid sleep routine and good sleep hygiene (comfort, temperature, darkness, quiet or natural sound to mask vehicle noise, etc..), also what I eat and drink tends to be important in that it's easy to make sleep difficult from such.

 

The best of luck.  No idea if any of that is helpful?



#3 exanimo

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Posted 03 March 2013 - 06:34 AM

No naps during those days or anything? How do you get through the EDS? 

 

I have some insomnia. But...not usually. I hit the pillow, I'm out. But I do wake up in the middle of the night a lot, like wide awake. But if I stay in bed, I get to sleep within a few minutes again. There are occasions where I can't fall asleep right away, but these have been very frustrating because it's completely out of my norm. I've hardly ever not been able to fall asleep. So I guess, no, I don't really have insomnia.



#4 sk8aplexy

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Posted 03 March 2013 - 10:56 AM

Examino, if your questions are to me.

Basically, somehow? Don't get me wrong I do have tiredness, and I over-exhaust easily, yet Cataplexy has been the more intruding matter for me.

I note the tiredness coming on when I'm not stimulating myself in some way; any more such is done through reading, observing and contemplating, a lot fascinates me.

Like I said in the last post, I live a very mellow life.   

Especially at this point with the understanding and recognition, compared to a few years ago at 28 still having no idea of what it all actually was, and had been.

I think I trained myself, throughout my life prior, to fight through the EDS mentally.  It had become frequent/steady fatigue though, and had escalated as Cataplexy collapses, which frequency of collapse escalated and escalated throughout my 20's.

Had 9/10ths of Pancreas removed at 4 months old, nearly died.  Would stop reacting being tickled as a baby and would stare off, I guess...

Can remember arms being un-responsive when I was tickled as a kid.  Headaches, allergies, ear infections and other matters always plague/d me; to the point that I didn't pick up on, or let certain things, like the arms being un-responsive, get to me.  Doing endless activities like music on multiple instruments, multiple sports, traveling often, paper route/s, volunteering, public and private schools; I had no time to note 'all' of such.

Changing dramatically over many years, my diet definitely seems to have helped me feel less fatigue overall; but with stress and the more that I try to do, especially which is straining and/or demanding, the worse my sleep is and the EDS is.  It presents itself in the common way - nodding off, having to sleep immediately after coffee or within an hour after waking or napping, being scatter brained or day dreaming, feeling a heavy weighted down cloud like burden (physically and/or mentally), etc...

 

On an opinion note, we each are effected in different ways, each and every one of us experiences the different symptoms in variations and different degrees of, each; and some don't experience each and every symptom.  I do think for some reason that my EDS is just one of the 4 tetrad N symptoms that I experience sometimes lesser, and like I said the Cataplexy hits me the hardest of all the symptoms.  My MSLT showed a bit longer average time to hitting REM, being 9 min, but I dreamt in all naps and had 3 SOREMS...

The HH with SP are also frequent but those, for me, also are dramatically effected very much like the EDS, similar to what I say above here...

 

-please don't quote and copy, cut or paste this below...  thanks-



#5 exanimo

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Posted 03 March 2013 - 03:25 PM

No sk8aplexy, my question was to basil44, sorry for the confusion! 

 

I understand we all have varying symptoms and it's not the same for everyone. But without any more information from basil44, I can't imagine having even a lesser degree of EDS and not sleeping for days. But like you said, I'm sure there are many factors. 

 

EDS is the one symptom that is common with all N, at least that's what I've read. That doesn't mean that everyone experiences it the same, but it is still there. So I was just hoping to get some more information from basil44, to perhaps piece together the insomnia they are describing.

 

But for your reply, sk8atplexy. I have a few questions, just because I am curious. Does the caffeine help reduce the EDS for you? Or improve alertness? Does managing your diet closely seem to improve any of your other symptoms? 

 

I find caffeine doesn't help my EDS, but I also drank A LOT of it, through the years. So I think I've just built up a tolerance. I tried gluten free (before I was diagnosed) and it didn't seem to improve my EDS either. But it does help my acid reflux, as when I am eating foods higher in wheat or gluten, I tend to get it bad.



#6 sk8aplexy

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Posted 03 March 2013 - 05:20 PM

The effects of the coffee help sometimes with both, perhaps more so the alertness, as there are many times I do have to sleep basically immediately after drinking such.

I do however, limit the coffee each day to one 16oz cup which I tend to not finish (I add a lot of cinnamon -for my system- and a small amount of soy milk!).

 

Yes, the diet has helped with much, of it all and I have other matters than Nw/C -> but it is the one that I must look out for the most, as Cataplexy sucks.

Today on my walk home, with my coffee, a guy asking for change caused me to freeze and nearly collapse; I gradually mumbled, hunched over as I set down my coffee right away, trying to say "I have a medical condition, don't ask me for money".  I really should just cross the street rather than attempt walking past, they get me often with that.  It's the fact I wish I had money to give, plus I struggle in my own way too and it has gotten old, repetitive... -sigh-

 

Regarding the diet, such changes (gluten-free, mostly dairy-free, and no candies/sodas/beers/alcohol/processed foods/refined sugars/table salts -as much as I can avoid all that, I do-) and cooking most ~90% of what I eat myself, has helped tremendously. 

But also, I wonder, if has made me 'more sensitive now to certain things' that for a long time I'd simply consumed and become quite used to, the negative effects and/or sensitivities to such.  I am okay with such, as the benefit outweighs the aches. 

Like for instance, yesterday I had to go to Starbucks (argh) rather than the local coffee shop (line was like 20 minutes), the drop of starbucks soy (which was likely some vanilla soy creamer - with bad sugar) [and I'm assuming it was such] caused me an all day headache that hit basically within 5 minutes of the first sip, not to mention also the gross thick flavor (I poured 9/10ths of it out as the headache hit).  The local shop I believe uses 'silk' soy milk, maybe vanilla; but never does it taste so thick, nor cause such headache...

 

It's perhaps like, having a high tolerance for something and it having a weaker effect regularly, then when having such with a low tolerance, it then having a much stronger effect...

 

I do have occasional acid reflux like matters now and then, without the heartburn.  I try not drinking too much of anything, nor eating too much and I've had to cut back on the spicy green chili salsas as it seemed to be a culprit, like drinking too much tea at night.. :/ .



#7 basil44

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Posted 04 March 2013 - 07:18 PM

My insomnia usually keeps me from working at least one day a week. I also show up to work late on the other days. I have an extremely understanding boss. She likes the work I do so when I went into her office to resign so that she could hire someone more dependable, she talked me into staying. As far as the EDS I get a 30 minute break and a 30 minute lunch this year (i work at a public school)  so on the bad days I try to rest in my van. I have recently been prescribed Nuvigil. It's not perfect, but it is helping. I haven't had any "all nighters" in a couple of weeks. Today, I recieved a wake up light that I purchased on Amazon. We"ll see if it works. My husband asked me what time sunrise was :) But, I am curious to know if anyone else has severe insomnia with N.



#8 munky

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Posted 07 March 2013 - 01:25 AM

I've had insomnia all my life, actually. On a good day, I might manage to sleep for 4 straight hours without waking up--but that's it. Beyond 4 hours, I only manage to doze, I wake up every 20 minutes or so, and it takes another 20 minute to doze off. On very good--and very rare--days, I might manage 5-6 hours without waking up. Anything longer than that means I'm a) sick, B) drugged or c) all of the above.

 

On bad days, I can't manage to do more than doze--no real sleep--usually for about 20 minutes ... Then I'll be awake for an hour or two, followed by another 20 minute doze. There have also been some really, extraordinarly bad times when all I could manage was to doze off for 20 minutes or so once in a 24-hour period. Last time that happened, it went on for 2 weeks. The hallucinations were amusing.

 

Also, I can't take any medication containing diphenydramine (Benadryl, Tylenol PM, etc.), because of what it does to my sleep. The diphenhydramine will knock me out for a couple of hours, but once I wake up from that, I won't sleep again--at all--for days. The higher the dose, the longer the time I go without sleep.

 

I think the insomnia actually may have masked the narcolepsy in the early stages, before the EDS became impossible to fight. I mean, I've been tired pretty much since the day I was born. I have never, in my entire life, had what normal people refer to as "a good night's sleep". In fact, I had no idea what it felt like to actually be awake until I started taking Nuvigil. When I described how I felt those first few days, one of my friends told me that's what it means to be awake. It was a novel experience. (Alas, it didn't last beyond that first few days.) So, being tired was no big deal to me. It wasn't until I started losing the fight with EDS--not only unable to fight off a sleep attack, but not even realizing they were happening--that the narcolepsy came to light.

 

The Nuvigil certainly doesn't help me sleep any better. It does make it easier to stay awake, and make the brain fog a little less.



#9 DeathRabbit

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Posted 07 March 2013 - 11:15 AM

I've had insomnia really bad and occasionally still have issues. It seems like I do sometimes activate around bed time. It's gotten a lot better since I swore off the stimmies. I think they were having a sleep inhibiting effect, even long after they quit beign helpful. Because I would lie in bed and I was sleepy, but it's like the brain just wouldn't turn off. Like some mechanism was being blocked.



#10 DeathRabbit

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Posted 07 March 2013 - 11:17 AM

I've had insomnia all my life, actually. On a good day, I might manage to sleep for 4 straight hours without waking up--but that's it. Beyond 4 hours, I only manage to doze, I wake up every 20 minutes or so, and it takes another 20 minute to doze off. On very good--and very rare--days, I might manage 5-6 hours without waking up. Anything longer than that means I'm a) sick, B) drugged or c) all of the above.

 

On bad days, I can't manage to do more than doze--no real sleep--usually for about 20 minutes ... Then I'll be awake for an hour or two, followed by another 20 minute doze. There have also been some really, extraordinarly bad times when all I could manage was to doze off for 20 minutes or so once in a 24-hour period. Last time that happened, it went on for 2 weeks. The hallucinations were amusing.

 

Also, I can't take any medication containing diphenydramine (Benadryl, Tylenol PM, etc.), because of what it does to my sleep. The diphenhydramine will knock me out for a couple of hours, but once I wake up from that, I won't sleep again--at all--for days. The higher the dose, the longer the time I go without sleep.

 

I think the insomnia actually may have masked the narcolepsy in the early stages, before the EDS became impossible to fight. I mean, I've been tired pretty much since the day I was born. I have never, in my entire life, had what normal people refer to as "a good night's sleep". In fact, I had no idea what it felt like to actually be awake until I started taking Nuvigil. When I described how I felt those first few days, one of my friends told me that's what it means to be awake. It was a novel experience. (Alas, it didn't last beyond that first few days.) So, being tired was no big deal to me. It wasn't until I started losing the fight with EDS--not only unable to fight off a sleep attack, but not even realizing they were happening--that the narcolepsy came to light.

 

The Nuvigil certainly doesn't help me sleep any better. It does make it easier to stay awake, and make the brain fog a little less.

This post makes me wonder if sleep deprivation isn't the cause of your N symtpoms. Have they ever tried you on benzos? I have found that even just 0.5mg of Xanax gives me coma sleep. Normally, I wake up to use the bathroom 2 or 3 times durign the night and I get the 20 minutes before going back to sleep thing. On Xanax, I sleep until my bladder is about to explode, rather than waking up every time it gains a few droplets. Sorry for the TMI, lol.



#11 sk8aplexy

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Posted 07 March 2013 - 04:06 PM

Munky, wow that description is somehow very very relate-able.

In fact it hits like a hammer in just reinforcing how the 'clueless-ness' that I (painfully/stubbornly/strictly over time ~28 years convinced myself of being more or less basically, so-called, 'normal') seriously exhausted myself, through mentally to then physically or vice versa, back and forth, for so so long... 

From about 18 on I knew that something was definitely off, and around 20 having collapsed from Cataplexy a few times, who knew...  Within months of being born I had seizures and severe hypoglycemia was finally noted (there were months of wrong diagnosis, "besides the seizures he is perfectly normal" my parents were told over and over, reminds me of current stories), anyways 9/10ths + of my Pancreas was removed at 4 months old; that was only the beginning though, of the rollercoaster I've been on.

Yet I always recognize how lucky I've been and that things could be seriously worse.  Also, I don't believe in simple miracles (stubborn ones perhaps)...

In my post/s above I describe how insomnia was and is to me now, it was bad in college when I had a schedule, today with no schedule (besides trying to adhere to a general routine) I sleep when I can and/or must as well as trying to keep the normal sleep hours routine.  Stress and anxiety are severely related to it all escalating or lessening.

 

But, this: "I think the insomnia actually may have masked the narcolepsy in the early stages, before the EDS became impossible to fight."

And, that: "I've had insomnia all my life, actually. On a good day, I might manage to sleep for 4 straight hours without waking up--but that's it. Beyond 4
hours, I only manage to doze, I wake up every 20 minutes or so, and it takes another 20 minute to doze off. On very good--and very rare--days, I
might manage 5-6 hours without waking up. Anything longer than that means I'm a) sick, B) drugged or c) all of the above."

 

Are so so relate-able, for me.  Some comes and goes, but hardly.

My neck, then head and eye balls, will hurt/pulsate/throb so bad, if I stay in my bed too long, 8 hours+.

Or, if I try sleeping in another bed than my own, I just don't/can't sleep and/or get a headache possibly within minutes, or perhaps within the first couple of hours attempting to sleep.  It's not impossible to sleep elsewhere, but is rough...

Polysomnography's are horrid, too.  

Although I did have an MSLT with a 'sleep number/s' bed which was interesting.  Yet, I slept during the MSLT, I had some HH's with SP, during it too.

The MSLT occurred in a different area and with different beds, then where the Polysomnography was and with...

 

You're not entirely alone by any means.  It sucks and is rough.



#12 DeathRabbit

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Posted 07 March 2013 - 04:35 PM

I sometimes wonder if our upbringing is responsible for our insomnias and the like. We all had plush beds and cozy atmosphers to sleep in from day one. If we'd grown up sleeping on an old school bed with a lumpy hard mattress with more exposure to the temperature, etc, perhaps we wouldn't be to the point where everything has to be just oh so perfect with our sleep hygiene, for us to be able to even get crappy sleep.



#13 sk8aplexy

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Posted 07 March 2013 - 07:28 PM

Should say to clarify an aspect of my above descriptions.  That, the difficulty sleeping anywhere began in my 20's, unless it was hot, that I've always been sensitive to.

Am sure that skateboarding and ice hockey relate to the neck matters I have; headaches I've always had, yet not always in my neck which again began more in my 20's.

Minimal/Moderate (any) Cervical Disc Degeneration, is no good...

Narcolepsy shocked me though, I was like no way...

That was, when I finally discovered the term 'Cataplexy' in '08, after a google search of "laughter causing paralysis" since collapsing with friends began happening and actually really interfering in my life, I could no longer mask it (putting my head down) like I'd managed for throughout my 20's prior to 28, for some reason I'd collapse at home where comfortable and not in public, yet... 

Then, when Idiopathic Central Sleep Apnea appeared, mildly, in my first Polysomnography and the more that I read, was just so familiar and explaining to my character, fitting too much so around too many oddities or aspects of how I live. 

I finally realized my sleep was not good, at all; yet I was aware at that point I'd sleep like 8 hours and feel not rested what-so-ever.

Now, it's rare that I feel both (or even really either) mentally and/or physically rested, strong.  Mentally I do tend to feel focused or able to, but once I get around others or am trying to interact (perhaps not in my own head so much) I find severe difficulty in effectively communicating or it's as though what I say is just miss-interpreted and not understood, often...



#14 munky

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Posted 08 March 2013 - 12:44 AM

This post makes me wonder if sleep deprivation isn't the cause of your N symtpoms. Have they ever tried you on benzos? I have found that even just 0.5mg of Xanax gives me coma sleep. Normally, I wake up to use the bathroom 2 or 3 times durign the night and I get the 20 minutes before going back to sleep thing. On Xanax, I sleep until my bladder is about to explode, rather than waking up every time it gains a few droplets. Sorry for the TMI, lol.

 

Was actually on benzodiazepam for about a month as a result of that 2-week episode I mentioned. It made the RBD worse, and I actually went sleepwalking for the first time in my life. I lived alone, so I have no witness to what happened, but based on evidence when I woke up, it looked like I'd gone for a walk in my not-particularly-safe neighborhood in the middle of the night (it was a weekend, so I was of work) dressed in nothing more than a button-down shirt and undies. That, combined with the fact that I'd wake up in a brain-dead fog that persisted for hours led me to stop taking them, once the prescription ran out. By then, I'd gotten in to see a sleep specialist. Since my insurance at the time wouldn't cover any sleep studies, he diagnosed a circadian rhythm disorder, ideopathic primary insomnia and RBD based on anecdotal evidence (of which there was plenty, from my entire previous life). And the general feeling of tiredness I had before was nothing compared to the EDS I have now. Before, I could stay awake and function ... now, it's a never-ending fight.

 

I sometimes wonder, however, about Parkinson's. RBD is extremely uncommon in the young, and I've had it all my life--in fact, most of the anecdotal evidence comes from when I was a child, since I learned not to put my bed in a corner, where I can injure myself by punching, kicking, elbowing and headbutting the wall. It is, however, associated with Parkinson's, and daytime drowsiness, REM disturbances or insomnia can be symptoms of Parkinson's. I also have what was diagnosed as an 'essential tremor' in my right hand which, like RBD, might be linked with Parkinson's and might indicate an increased likelihood of developing Parkinson's. Haven't had any of the more obvious signs of PD, though, and I do have other neurological issues that, for all I know, may be related, so I'm hoping that particular worry is just too much research with too little education behind it.



#15 DeathRabbit

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Posted 08 March 2013 - 11:56 AM

Was actually on benzodiazepam for about a month as a result of that 2-week episode I mentioned. It made the RBD worse, and I actually went sleepwalking for the first time in my life. I lived alone, so I have no witness to what happened, but based on evidence when I woke up, it looked like I'd gone for a walk in my not-particularly-safe neighborhood in the middle of the night (it was a weekend, so I was of work) dressed in nothing more than a button-down shirt and undies. That, combined with the fact that I'd wake up in a brain-dead fog that persisted for hours led me to stop taking them, once the prescription ran out. By then, I'd gotten in to see a sleep specialist. Since my insurance at the time wouldn't cover any sleep studies, he diagnosed a circadian rhythm disorder, ideopathic primary insomnia and RBD based on anecdotal evidence (of which there was plenty, from my entire previous life). And the general feeling of tiredness I had before was nothing compared to the EDS I have now. Before, I could stay awake and function ... now, it's a never-ending fight.

 

I sometimes wonder, however, about Parkinson's. RBD is extremely uncommon in the young, and I've had it all my life--in fact, most of the anecdotal evidence comes from when I was a child, since I learned not to put my bed in a corner, where I can injure myself by punching, kicking, elbowing and headbutting the wall. It is, however, associated with Parkinson's, and daytime drowsiness, REM disturbances or insomnia can be symptoms of Parkinson's. I also have what was diagnosed as an 'essential tremor' in my right hand which, like RBD, might be linked with Parkinson's and might indicate an increased likelihood of developing Parkinson's. Haven't had any of the more obvious signs of PD, though, and I do have other neurological issues that, for all I know, may be related, so I'm hoping that particular worry is just too much research with too little education behind it.

Well, you might consider Klonopin or Xanax still. Diazepam aka Valium is really more of a sedating agent than an anxiolytic. It takes like an hour to even start working and then the half ife is anywhere from 20-100 hours. Xanax half-life is only 11 and starts working pretty much as soon as you swallow it. Klonopin is kinda in the middle between the two.



#16 munky

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Posted 08 March 2013 - 09:57 PM

I'll bring it up with the neurologist when I see him next week. Thanks for the info!



#17 basil44

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Posted 09 March 2013 - 04:40 PM

DR,

I have taken many different anti anxiety pills and i am currently taking ambien. However, I still have nights that I don't get a good nights rest. Since the Nuvigil I seem to be able to get a little rest at night, but am soo sleepy and tired the next day.

 

I've been using a wake up light for in the mornings. the first morning I woke up before the alarm (which is very out of the ordinary). the second morning the same. That night I couldn't sleep but it still seemed like it worked somewhat the next morning. The jury is still out. I am going to give it one more week to see how it goes.

 

It's a shame we can''t get a good nights sleep. I have had to drop out of college and am seriously contemplating disability.  On the good days I think "Oh, I can do this, I don't need to go on disability," then the bad day "this isn't worth it."



#18 munky

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Posted 09 March 2013 - 09:02 PM

It's a shame we can''t get a good nights sleep. I have had to drop out of college and am seriously contemplating disability.  On the good days I think "Oh, I can do this, I don't need to go on disability," then the bad day "this isn't worth it."

 

I know that feeling all too well. I've been struggling with school and a full-time job, and now that I'm on 12-hour shifts I had to switch to online classes and cut back the number I'm taking. Calculus as an online class is killing me. I've never been great at math, but I surprised myself by acing my Trig class. That, however, was in a classroom setting, with lectures. No lectures for an online class. The professor posts his lecture notes, but reading them isn't the same as having him explain them. I got a B on my first test, but the next test is due this week and I have no high hopes for it. Worse, I'm afraid when I get to the Final at the end of the semester, I'm just going to be lost. We're not allowed to use our books or notes for the tests, but we do have several days to do them, so I can take my time fighting through it--and take a break to curl up in a ball and cry in frustration when I need to. Won't be that way for the final. It's a proctored exam on-campus. I spend a lot of time, while I'm trying to figure out my Calculus, wondering why I'm pushing myself to do this. Why not just give up? I've worked this long without a degree. I have a stable job, even if I don't much like it anymore. I can teach myself the programming languages I'd need to switch careers.

 

But, then, without that piece of paper, it's awful hard to even get your toe in the door in a new career, so I plow on. And I hate the fact that I can't take as many credit hours as I was, so it's going to take even longer to get my degree, and that means this is all just going to drag on far longer than it would have--and I was already pretty daunted by how many years it would take to begin with. Disability is, sometimes, one hell of a temptation ... but then I visit with my neighbor, who is on disability, and see how she struggles to make it from one month to the next, and decide I don't want to live with that kind of stress, either. Plus, if I was home all the time, my mother and I would kill each other, and then who'd take care of the dogs, cats and chickens?