Monday, September 17

Throwing Good Medicine Down the Drain

A couple of weeks ago, my husband accidentally threw an entire bottle of Nuvigil away.

He had gotten his prescription filled, taken one dose, and later that day, he threw it into a public trashcan with a bunch of other trash. He didn't even realize it until much, much later.

We were not happy.

Our co-pay for this drug is $35. Now maybe that isn't a lot for some families, but if your household is anything like ours, you're on a tight budget. We budget a certain amount each month for doctor's appointments and medications, and our (ridiculously) expensive health insurance. I knew that shelling out an extra $35 for medication was going to sting, but just a little - especially compared to something like a failed transmission (July) or insurance for an unexpected new vehicle (August). The main problem was the hassle of explaining to the insurance company that my husband simply lost the medicine. He didn't sell it, take it all, give it to someone else, feed it to the cat... or whatever else they suspect when this happens. Fortunately, the doctor's office was quite understanding and helpful. Although it wasn't immediate, my husband was able to get his replacement prescription within a reasonable amount of time... considering.

So it was actually a little while before my husband took his Nuvigil and Prozac together. What a difference! One day he actually said, "I feel great!" I was very happy to hear it. Finally, a drug combo that worked perfectly! (Yes, I know, go ahead and roll your eyes.) A short time later, I asked my husband if he was still feeling great, and he was, but... Taking them together seemed to have a few side effects after all (of course). Mild anxiety, appetite suppression, and feeling wired. As we talked, I realized that those symptoms sounded awfully familiar. Sure enough, moments later, he said, "It basically feels like Adderall without the aggression." Immediately, I thought, Oh no! Not again! But he went on to explain that without that Adderall Edge, he actually felt okay, just a little too wired. After a day when he got up at 4am, mowed the lawns, washed the car, ran errands and then started on a major project in the garage, I had to agree. Wired? More like AMPED.

For now, our solution is for my husband to continue to take the Nuvigil daily, and take the Prozac every other day. When he sees his doctor again this month, we'll talk about adjusting dosages. If that doesn't work... back to the drawing board.

Monday, September 10

Narcolepsy + Cataplexy + Depression = Prozac!

The mystery drug that I mentioned in my last post? Prozac. If you just said to yourself, "Really? Hm..." Then we shared the same reaction.

It was almost some sort of joke:

Prozac can reduce the severity of cataplexy!
Prozac can increase the severity of cataplexy.

Prozac can restore a dampened libido!
Prozac can cause a loss of libido.

Prozac can improve depression!
Prozac can increase depression and lead to suicidal thoughts.

"Are you kidding me?" I yelled. Okay, I didn't really yell, but I was baffled. So basically - as with many "solutions" the world has to offer - it was a crapshoot. Either it would help my husband's symptoms... or it wouldn't.

As we researched Prozac, I was shocked at the stigma still attached to it. It's a running joke now of course - want a permanent smile? Pop some Prozac! But, goodness, it's been out for ages - at least since the 80s.

I can see the humor, though. My favorite Prozac joke is a cartoon that I've saved:

The verdict? Well, he has just been taking Prozac for a few weeks now, but my husband is very impressed with the improvement in his mood. It isn't such a significant lift that I've noticed him walking around with a permanent grin (which would be creepy), but he does seem to feel better. More importantly, he is impressed with the effect it's had on his cataplexy! No more extreme weakness after his naps, no more fumbling to turn a doorknob, no nausea or faint-stomach feelings after trying to stand after a nap. So the results have been positive so far. I'm happy for him, of course, and also relieved that it's covered by our insurance. The cataplexy isn't gone, but it's better.

I have a lot more to say about the symptoms of Prozac, but for now, I'm still focusing on the cataplexy information I've discovered. I didn't know anti-depressants can help with cataplexy, and I'm still trying to articulate (for the purposes of this blog & myself) exactly how that works. For those of you who have contributed so much information about cataplexy - thank you so much! It's quite informative and very interesting.

Just when it seems like I couldn't learn anything else about my husband's disease - I do!

Tuesday, September 4

Xyrem Is for Cataplexy... Unless You're My Husband

For me, cataplexy is one of the scarier aspects of my husband's illness. Although not every narcoleptic suffers from cataplexy, it is a fairly common symptom of the disease. I've been living with narcolepsy for several years now, but I still remember the first time I ever saw cataplexy in action like it was yesterday. My husband's cataplexy is much better since his illness was diagnosed, but it is still a problem. It also still scares me. You've never seen two people stop laughing faster than the two of us when we're amused, lemme tell ya. That reminds me...

...many years ago, my husband and I went to a comedy show while on a trip. It was really fun and the comedians were pretty funny. One in particular was hysterical; I laughed until my stomach ached. During the evening however, I noticed my husband didn't laugh much. At times he gave a short bark of laughter and then put his head on the table. I assumed that he just wasn't that amused. After the show, when asked, he insisted that he had actually had a great time. He certainly sounded sincere, but I just didn't understand why he didn't laugh much. Now of course, I shake my head, imagining what torture that must have been for him! Prolonged laughter makes my husband collapse, where he remains frozen for several minutes. So suppressing his laughter for a couple of joke-filled hours would have been the only way to prevent a cataplectic attack - which I'm sure would have led to a huge scene and major embarrassment.

In my mind, my husband's cataplexy is pretty bad. But apparently, not bad enough. On a recent visit with his sleep specialist, my husband again asked about the drug Xyrem. Xyrem is used to treat cataplexy, and since my husband still has attacks, we thought we should look into it. To our surprise, his doctor seemed extremely reluctant to prescribe it. He mentioned that it was a "pain" to take, and really only prescribed to patients with severe cases of cataplexy. My husband and I were both taken aback. Sure, we know that there are those whose cataplexy is much, much worse, but we were shocked to hear that my husband's cataplexy is actually considered "mild." After further discussion, he recommended a different drug, which my husband is now taking and with much success so far (more on that drug later). We were intrigued with the information about Xyrem, though. That visit prompted me to do a little research:

Xyrem - "XYREM is a medication approved for the treatment of excessive (too much) daytime sleepiness and the treatment of cataplexy (weak or paralyzed muscles), both in patients with narcolepsy." That description is from the website. From those I've spoken to who currently take Xyrem, they admit that taking it before bed and then waking up to take a second dose can be troublesome. I also didn't know that it was a liquid drug.

I'm also now researching more extreme cases of cataplexy. I know of a few, but they are still very similar to my husband's. If you know of anyone whose cataplexy is a constant interruption, email me or post a comment here.

So for now, Xyrem isn't an option. After the research we've done however, maybe that isn't a bad thing.

Monday, August 27

How to Rid Your Home of a Flea Infestation

Nope, you're not in the wrong place. Yep, this is still a blog about narcolepsy. Yes, my husband's narcolepsy did lead to a flea infestation in our home... in a rather roundabout way. Here's what happened:

I research narcolepsy constantly. Every week (at least!) I discover something new and interesting about my husband's illness. Well recently, I did some research about ESAs - Emotional Support Animals. Are you familiar with the term? An emotional support animal is jut what it sounds like; it offers emotional support to someone who desperately needs it. It's more than a pet - it's a friend, confidante, and someone to care for. Of course my husband has our young daughter and me, but I thought an ESA would be great for him. It would be just his, and since he's been a long-time cat person, I decided to ask him about adopting an adult cat. My husband loved the idea and voila! we added an adult female long-haired cat to our family. She and my husband were instant best buds, which was great. Unfortunately, our new friend had a secret problem that she neglected to mention to us: FLEAS.

I admire all of creation, but I must admit, fleas are disgusting, annoying - and in groups - horrifying! I've never experienced a flea infestation, and if you haven't had the pleasure, lemme tell ya - it's a nightmare. (psst... for those of you who have emailed me recently, this post is why I haven't gotten back to you yet! You know who you are...)

No, not that Flea.
That flea.

It started with just one. Well, just one that we could see, anyway. Before we knew it, they were everywhere! By the time we noticed that we might have a problem, we had a problem. Fortunately for our household - it could have been worse, and, our solution worked wonders. So for all pet lovers, animal hoarders, and cat people, here is our guaranteed (almost) method of removing unwanted fleas from your home. (I'm assuming you don't want fleas in your home.)

STEP 1. Get sprayed - I mean you. Seriously, even before you treat your pet, treat yourself. I highly recommend using a bug repellent with a high concentration of DEET, which I wouldn't typically recommend using. However, this is an emergency, and sometimes flea bites can actually make you ill. So get bug spray and treat your feet and ankles and whatever's on them (slippers, shoes, socks, etc.) and the cuffs of your pants every day until the fleas are gone. Remember, fleas need blood to survive. It doesn't matter whose.

STEP 2. Treat your fur baby. Now it's time to treat the animals in your home. If your situation is as simple as ours, it will be fairly easy. We have one indoor cat. If you have multiple pets and/or outdoor pets, your situation is going to be harder to control and more expensive to fix. Just sayin'. In any case, get a high-quality flea treatment for your animal(s). If necessary, take them to your vet to get a thorough flea bath and treatments. If that isn't necessary, use what we did - Flea Killer Capsules! We were impressed with these. You can hide the pill in a treat or open the capsule and dump the contents in kitty's food. Whatever you use, don't skimp on the quality. This is not an area where cheaper is always as good as the name brand stuff. You'll want to treat your pet immediately after you treat yourself. Now when fleas jump off of your furry friend, they won't find their next meal in you. Also, if you use a treatment like the one we like, the fleas that do bite your pet will die!

STEP 3. Start cleaning. This is the part that will take the most time, but it is necessary. You will need to gather or buy the following:
  • Ammonia, bleach, Pine Sol, or anything else you prefer to use to wash hardwood, tile, or linoleum floors.
  • Carpet powder, soap for a steam cleaner, or anything else you prefer to clean carpeting and rugs.
  • Laundry detergent and fabric softener (if you don't already have plenty)
  • Black plastic trash bags and ties (they need to be black)
  • Flea killer spray (We loved Hot Shot)
  • Dishwashing liquid
  • Disposable plastic or aluminum pans (like the pans pie crusts come in)
Once you get all of your supplies together, here's what to do:
  • Wash anything that has been contaminated, using hot water where possible. (If this overwhelms you, just wash what you need to for now. Store dirty or clean laundry, shoes, bedding, or anything else that you can't get to yet, in black plastic trash bags until you're ready to wash everything and put it back in place.)
  • Anything that may have been contaminated doesn't necessarily need to be washed, so you can throw it in the dryer on high heat. The heat will kill both fleas and eggs. (Notice I said "may have been." Better safe than sorry.)
  • Anything that can't be washed - place in large black plastic trash bags, tie them closed, and place in hot sunlight. The heat generated inside the bag will kill fleas and eggs.
  • Anything that can't be washed, dryer dried, or bagged, spray with flea killer. I had to spray a couch and an easy chair - among other things.
Start on the floors:
  • Mop, steam clean, hand wash... whatever will get your floors clean. You'll get rid of lots of fleas this way and disturb their nests and eggs. Do a thorough job so that you won't have to do it again later. We have hardwood floors, so I used hot water and a generic lemon ammonia cleaner to mop the floors.
  • Once your floors are dry, start spraying everything with your flea killer. I hate using lots of chemicals in my home, but this stuff works great. Spray whatever you can from the floor to the couch. Don't forget to treat underneath chairs and couches, long curtains, behind shelves and cabinets... try to get something in every nook and cranny. The spray will kill on impact and kill any eggs, but you'll need to spray again in a couple of weeks so that you aren't enduring a second infestation weeks later. Don't forget the litterbox or dog bed - places where your pets hang out too!
STEP 4. Now set out your traps. What traps, you ask? Why, your flea traps of course! No need to spend 13 bucks on one - just make your own.
  • Put water and dishwashing liquid (just a drop or two) into a shallow dish or pie pan.
  • Set one trap in every room of your house.
  • The key to these traps - to attract the fleas - is to set the traps under light. At night, move a lamp to the floor, put a trap beneath it, and turn out the lights in the rest of the room.
  • In the morning, check your traps for dead fleas to see if your problem still remains. If you only see a couple of dead bugs, don't fret - this is a good sign! Hopefully it will be empty, but if it's full - uhoh - you may need to go back a step.
STEP 5. Sigh in relief. You're done! You should see either a significant decrease in the flea population in your house or none at all. I found one today, but it wasn't moving too quickly. I got out my spray and covered a corner of my office that I missed. Also, don't forget to breathe. You can always burn your home to the ground. Okay, I'm kidding. But seriously, it's gonna be okay. You don't have to try to rid your home of fleas in just one day. Do what you can when you can. It took my husband and I several days to really make a significant difference. I'm still working on my office and the kitchen.

P.S. If you just don't have the time or energy to do all of the steps listed here, @ least clean and spray your floors. If you prefer, you can even call an exterminator. My method is for the average family, who, like us, doesn't have the budget for an exterminator and just wants the fleas gone with as little chemical interference as possible (that's why I don't mention using a fogger).

If this post bored you to tears, I'm sorry. But this experience really shook me up! I just had to pass on this info to anyone else who might ever go through a home taken over by fleas. The lesson I learned? Once again, narcolepsy interrupts our lives. :o)

Monday, August 20

That Fine Narcoleptic Line

Narcolepsy can be tricky sometimes.

Everyone makes mistakes, has idiosyncrasies, or experiences periods of forgetfulness. Narcolepsy ramps that up to a whole new level. See, when the effects of narcolepsy are more dramatic (cataplexy, sleep paralysis, etc.), people seem more empathetic. But when the effects of narcolepsy are more mundane, people seem to doubt that narcolepsy is even the culprit behind the symptom. Consider the following:
My husband is often late for work. This is despite my best efforts in helping him to wake up well before he needs to leave, preparing his work clothes and lunch, constant notes and reminders (like the one next to the front door which reads, "Wallet? Keys? Meds?", and warnings from superiors at work regarding his tardiness.

My husband is extremely forgetful. (Is there a word stronger than "forgetful?") If he has a grocery list with ten items in hand, he'll forget one. He forgot to stop and gas up the car so often that we finally decided to fill the tank on the same day every week, but he still forgets occasionally. Often, he's only made aware when his car runs out of gas and stops on the side of the road.

It is impossible for my husband to repeat a conversation that he just had. If someone calls us, it's best to let the answering machine pick up if he's is the only one available to answer the call. He simply cannot relay a phone message. Immediately after hanging up, he'll hold his head in frustration, struggling to remember what was just said.
The list could go on and on. They may seem like your everyday idiosyncrasies, but for my husband, they are just more of the annoyances that come with having narcolepsy. For me, it's a reminder that there is a fine line between (stereo)typical husband behavior and a narcoleptic's unavoidable errors. Sometimes the line is so fine... that I forget it's even there. I must constantly remind myself that my husband hates making the same little mistakes repeatedly... and I ain't perfect either.

Monday, August 13

The Isolation of Narcolepsy

I feel a little down today.

This has been one of those weeks when I'm repeatedly reminded of just how much narcolepsy can isolate a person from the waking world.

Most people just don't get it. They watch your loved one fall asleep and judge. If your spouse isn't by your side, it's assumed that they must be asleep. They make jokes, or ignore you, or interrupt impatiently as your narcoleptic loved one searches for the right words. Sometimes, you get left out of dinners, parties, and anything else even remotely fun.

But it's not always someone else's fault.

Sometimes I decline invitations because I just don't want to deal with narcolepsy in a social setting. I don't want to nudge my husband awake, wake him when he begins to snore, or watch him worriedly as he fights to control a laugh. It can be exhausting, so at times I'd just rather stay home.

Then there are the let-downs: dates aborted because my husband is too tired to continue. Movies left unfinished... until further notice. Intimate moments become awkwardly silent. When one half of a partnership is always tired, the healthy spouse must quickly get used to the old adage, "let's play it by ear."

Much of the time, I'm okay. I have enjoyable hobbies, a few supportive friends, my volunteer work, and of course, my beloved child to fill my days with joy. But sometimes... narcolepsy leaves me lonely. Which leads me to days like today, when disappointment makes me a little weepy and I go to bed early.

Gray days are inevitable. But knowing that they can't last forever helps make it okay.

Monday, August 6

Adderall Night and Nuvigil Day

Do you know the difference between night and day? I do. It’s my husband on Adderall and my husband on Nuvigil.
My husband is so much closer to normal – our version of it anyway. He isn’t keyed up and agitated, his appetite has returned, and he is able to sleep somewhat. 

Things could still be better, though. Nuvigil is not the perfect solution; if he doesn’t eat when taking it, he gets headaches and he still doesn’t get enough sleep. He also still has mild anxiety attacks every now and then. We’re working on that part.

But for now, I’m delighted with the difference.

Monday, July 30

Ten Things I Wish I Had Known Before I Married a Narcoleptic

This is my 50th post!

Pretty neat, huh? I wasn't exactly sure how long I'd write here, really. I'm pretty excited to publish #50. In honor of that, I thought it would be cool to post something I've been mulling over for awhile. I’m often asked about this: what do I wish I had known before I married a man with narcolepsy? A few things come to mind...

Ten Things I Wish I Had Known Before I Married a Narcoleptic 
  1. A “good” doctor is key. Narcolepsy isn’t like any other illness. It isn’t just about sleep. It’s also about mood, self-esteem, daily functioning – quality of life. I wish that I had known that any old sleep specialist won’t do. The doctor needs to care. 
  2. Finding the right plan takes time. Several different medications are used to treat the symptoms of narcolepsy and cataplexy. Not all of these medications affect narcoleptics the same way. Not all narcoleptics even have the same symptoms. Not all treatments (sleep schedules, dietary restrictions, exercise programs, psychotherapy) work for every sufferer. You’ll have to put in time and research to find the right treatment for your situation. I wish that I had known that trial and error is just part of the process.
  3. Be careful not to let narcolepsy isolate you. Yes, it can be embarrassing to be with someone who always falls asleep in public. A narcoleptic’s occasional sluggish thoughts and speech can be awkward in a social setting. A cataplectic attack in front of others might be humiliating. Although it might be tempting to avoid these experiences altogether by separating yourself from the rest of the world, don’t. Narcolepsy can be isolating enough. Positive association with friends and family is key to maintaining normality. I wish that I had known just how important staying connected is to my family’s well-being.
  4. Not everyone will be supportive. There will be those who just won’t understand your loved one’s illness. There are those who won’t even believe it’s that big of a deal. There are those who will make impolite jokes, insensitive comments, and generally get on your nerves when it comes to their lack of sensitivity about narcolepsy. Although you may want to try explaining the gravity of your situation until you’re blue in the face, don’t waste your breath on those who don’t care. I wish that I had known that I’m not obligated to defend our choices about narcolepsy to anyone, especially those who are unsympathetic.
  5. There are worse things. It’s not cancer or AIDS or some other fatal malady. Yes, my husband struggles with his illness and it certainly affects our entire family. I don’t take it lightly and I wish that more people understood what a devastating disease it is. That said, it could be so much worse. I wish that I had known that "it could be worse" is a cliche that actually helps to keep things in perspective.
  6. People without narcolepsy need care too. Maybe even more so. Sometimes we get so focused on my husband’s medications, sleeping habits, appointments, and general health that I lose sight of my own needs. In order to better help my husband and take care of myself, I need to stick to the obvious: get plenty of rest, maintain a healthy diet, exercise regularly, and find time to relax. I wish that I had known that sometimes it’s better for my whole family if I put my health first.
  7. Hate the disease, not the person who has it. I've mentioned it before, but it's so true: I often view narcolepsy and my husband as two different people. This view goes a long way toward helping me to remember what's behind my husband's lethargy, disinterest, or forgetfulness. I wish that I had known that making the illness our mutual enemy draws my husband and I closer. 
  8. Bad days are inevitable. We live in an imperfect world, so nothing will ever be perfect. With or without narcolepsy, no marriage or family is without problems. Narcolepsy will probably lead to some crummy days, but it doesn't have to mean anything more drastic than that. I wish that I had known that having a bad day isn't a sign of failure. 
  9. Humor helps. Really, it does. Some of my husband's crazy sleep-speak is pretty hilarious. Every now and then, his cataplexy can even be funny. I wish that I had known that being able to laugh at narcolepsy is a healthy way of coping with a sometimes overwhelming disease. 
  10. All you need is love. The Bible said it first and the Beatles sang about it. Just imagine if your love for the narcoleptic in your life was stronger than your impatience, your frustration, and your anger over this exasperating disease. I wish that I had known that with real effort, love really can surpass all of the negativity narcolepsy can generate.
In case you didn’t notice, I didn’t say that I wish that I’d known my husband had narcolepsy. I left that out intentionally. It doesn’t matter, really. Even if I'd known that he was ill, I would've fallen in love with him anyway. But a list like this would've helped me to know what I was getting into.

Tuesday, July 24

Maybe My Husband Isn't the One With Narcolepsy

I received the most touching email recently. It was from a woman who, like me, has a husband with narcolepsy. While her email was full of love and admiration for her hubby, it was also laced with stress, fatigue, and angst over her situation. She seemed torn between being in love with a great guy and the difficult reality of loving someone who can't always love you back properly.

I think I've found my twin sister.

In her email, this big-hearted woman said, "I suffer from Narcolepsy, he is surviving it." That statement reached deeply into my subconscious and yanked out the same realization for me. It truly is a deep thought. Let me explain why.

Since childhood, my husband has been... different. People thought he was weird, difficult, lazy... nothing positive came of living most of his life with an undiagnosed sleep disorder. Now that he's an adult, a bona fide Narcoleptic, and taking medication appropriate to his condition, he is no longer a victim - he is a survivor. He survived life's hardships undiagnosed and now struggles valiantly to survive everyday. He fights prejudice, ignorance, and apathy of his illness. He has a family who loves and supports him, a job that (sometimes) tries to understand, and health insurance that covers him for now. He's truly surviving.

It's different for me. Because my husband lived for many years knowing that something was off, it was a relief for him to finally hear that he was not "weird," but ill. Despite knowing my husband for much of my life, I had no idea that he was ill until after we were married. His diagnosis presented a new world for me: living with a chronically ill spouse, researching an illness that I barely understood, and a less certain future for my marriage.

So when I read the email from my long lost twin saying that she was the one who actually suffered from narcolepsy while her husband was surviving it, I totally got it. Reflecting on her words, I realized that my husband and I handle his illness differently. Simply put, he deals with it, I stress out over it. I want that to change, though. In the same email, my new friend also said that there's "no magic pill" and she's right - there isn't. But changing my attitude has got to be a great first step on the road toward a solution.

Thank you Karen for your lovely e-mail.

Thursday, July 19

Narcolepsy and the Roly-Poly

Narcolepsy turns my husband into a roly-poly.

You know what a roly-poly is, right? We have tons of them in our garden. They meander along, perfectly content until you touch them. Then they immediately curl up, hiding themselves away until the perceived danger has passed and they can get back to their roly-poly business.

For my husband, cataplexy - narcolepsy's evil twin - is the worst during times of emotional stress. If you aren't sure what that means, think of the most stressful moments of your day - good stress or bad - and imagine collapsing into a skin puddle every time you react. Whether it's laughter, anger, or tears, you lose muscle tone and slide gently to the floor... hopefully. Most of the time, my husband ends up falling in an ungainly heap that looks fairly painful. It's worse than fainting because the sufferer is still awake! My husband can hear everything when he suffers a cataplectic attack - he just can't do anything about it. So maybe it would be more accurate to say that cataplexy turns my husband into a roly-poly.

Understandably, he is usually very reluctant to get emotional. While any emotion can make my husband get physically weak, the higher the emotional strain, the weaker he gets. But he isn't completely impassive. He’s just a lot more reserved than I think he would be without the constant fear of (literally) falling on his face. This emotional reluctance means that my husband avoids confrontations of any kind like the plague. Confrontations of any kind, including possibly difficult discussions with his wife, me. Now my definition of difficult and his version of difficult are vastly different. I don't think it's always that hard to review our budget or talk about our goals. My husband however, finds those conversations awfully tough. Sometimes he finds them impossible. That's when he becomes a roly-poly and hides until the danger - our difficult conversation - has passed.

Roly-polys hide by curling into a ball. My husband hides by sleeping.

I used to resent my husband's seeming indifference and avoidance of the more tedious aspects of marriage and general grown-up stuff. After his diagnosis, though, I am working to understand that he wants to have those harder conversations... but a lot of times he just can't do it. And the more impatient I act toward him at those times, the guiltier he feels about his inability to participate. The guiltier he feels, the more tired he becomes...

It's amazing to see the change in him, actually. He starts out like a normal person, listening, aware, wide-eyed. But as our conversation continues, his eyes droop dramatically, his face begins to go slack, and within five minutes, he is quite obviously very, very sleepy. He may try to hold out for a little longer, insisting that we continue, but not only is his obvious exhaustion a huge distraction, the conversation becomes more and more one sided. His responses take forever, and then sometimes they don't even make sense. His mood changes (would you be happy talking about your bills while you were falling asleep?) as does mine (frustration, mostly), and just a few minutes after the conversation begins, it's over. When he wakes, my husband is always both apologetic and embarrassed, but I'm quick to apologize too. My impatience isn't directed toward him. It's directed at this exasperating disease.

As I mentioned in a previous post, until we find a better solution, I’ll do my best to keep a firm grasp of the reigns... without making my husband feel guilty for needing me to.

Sunday, June 3

Narcoleptic Insomnia

Most narcoleptics don't sleep well.

Ironic, isn't it?

A common misconception of the disease is that a narcoleptic must get tons of sleep - in fact, too much sleep. Almost like a "too much of a good thing" syndrome.


Narcolepsy isn't about getting too much sleep, it's about being sleepy at the wrong time - among other things. At times, my husband can't sleep. It's really like a form of insomnia sometimes.

It took me years to get that. Did I say years? I meant YEARS. As in, recently I finally said, OH! Okay, I get it.

My husband gets up around 3am almost every morning. Regardless of what time he goes to bed, he wakes in the wee hours of the morning, stumbles around half conscious, and eventually crashes again. He tosses and turns, talks and moans, and finally wakes, nearly just as groggy as when he dropped off the night before.

Narcolepsy is sad that way. Just imagine, you're always sleepy, but when you can sleep, it's lousy. How messed up is that? We're in the process of finding medication that will help him to sleep, but in the interim, he suffers sometimes. We find that it helps to have:
  • A quiet, cool, dark bedroom
  • An alarm clock set well in advance
  • Permission for him to fall asleep whenever he can (meaning I don't get mad if he falls asleep unexpectedly)
With things already in place, whenever he falls asleep, it's okay. Of course, this only works when he actually falls asleep in his bed. Many times he dozes where he is - a chair, the couch, the kitchen table... I hate waking him. After all, he needs whatever sleep he can get, no matter where it is.

Thursday, May 24

Return of the Narcoleptic's Wife

Hi there.

Yes, my blog looks a little different. It isn't just your imagination - I have tweaked a few things. Here's what I've done in a nutshell:

Most importantly, I decided to alter the tone of my blog quite a bit. After much (much, much!) thought, and repeatedly re-reading my blog, I've decided that I'm going to focus on the positive.

Don't get me wrong - I don't plan on completely sanitizing my blog by only mentioning the rainbows. Some days are cloudy and that's just life. But I'm going to work harder to focus on the positives and I'm sure my words here will reflect that. I plan on sharing the gray days too, though. When my hubby was first diagnosed with this crazy disease, I really could've used a lot more input from those who understood how it was to be partnered with someone with narcolepsy. But my focus will be on positive ways to deal with this intrusive illness. If things become overwhelmingly negative, I'll still write out my feelings - but in my personal journal rather than online.

I welcome input regarding my blog updates, so tell me what you think! Stay tuned - we have a lot of catching up to do.